Another Thyroid Thread.... (Redux)

[Blueberry]

Since the original post got lost in the "upgrade gone bad".....please forgive the repost.

I've been feeling abnormally tired for a very long time (~10 years). It got noticeably worse over the summer. It's been dismissed by docs as "modern life" "that's just how you are" "lose weight and you'll feel better." But - I haven't been able to lose weight to save my life despite an appropriate diet and exercise, I've been really tired, and I've been having terrible headaches and increasing joint pain (which I was attributing to my weight). I've also had lots of days where it's very hard to focus.

I saw my ObGyn recently, and she re-tested my thyroid function. TSH has been between 2.03 and 3.01 for me historically, and now it's 4.46. Thyroxine has been between .81 and .85, and is now .64. She has suggested that low dose treatment might be an option, but referred me to my primary care. Due to her limited schedule, I can't see my primary care this semester (she only has a few hours of appointments each day Mon-Thurs). I'm seeing another doc in her office on 9/21.

I want to go as armed as I can in terms of info. Someone already posted on the original thread (Thanks!!) regarding her experiences with a similar level/treatment. She also posted about the new standard (.3 to 3). I've done some research as well, which suggests that anything over 2.5 is "high".

So...has anyone else experienced symptoms at these levels? Have you been treated and, if so, did you notice a difference? Thoughts on seeing a primary care versus an endocrinologist?

Thanks so much for any and all insight. I'm hopeful that treating this will help me feel better and move on with my life in a healthy way (energy to exercise, diet and exercise working). It's odd - but I'm almost glad to have an explanation. I've just started classes, so I really don't need the extra fatigue.

[redrhodie]

My tsh was over 6, and I only started levothyroxine less than 2 weeks ago, but I already feel much better. I wish I was diagnosed sooner. I bet you will feel a big difference once you start the med. You're wise to get this under control before your symptoms get worse.

[girlontheroad]

Blueberry, if the tests and treatment for thyroid are not successful, what you describe sounds alot to me like fibromyalgia. I was very fortunate and got diagnosed with it quickly (which in the 90s is amazing) and treated it is not a problem. I was having severe headaches and I was exhausted. The not being able to focus is part of what is called fibrofog. Anyway, it might be just that it's what I'm familiar with but I thought I would throw it out there to consider if what you are trying doesn't help.

[indysteel]

I thought I'd post this year just instead of my older thyroid thread. I've now been on Synthroid for about 6 weeks at a very low dose. I had a blood draw on Friday and just heard the results. Prior to treatment, I was in the mid 4's. Now it's at .635, which my doctor described as "normal." I'm not sure I agree. I do feel better than I did prior to treatment, but at times, I feel slightly hyper. I sense in the middle of the night the most because I've been waking up at 4 for no reason and struggle to get back to sleep.

This is where I find my doc frustrating. I'm not sure why she'd call .635 "normal," without also asking me how I'm feeling. I talked just to her nurse, and quite honestly, I'm always hesitant to get into it with her. I'm tempted to take the drug on less than a daily basis and see if that alters my symptoms a bit. I hate chasing after a number every 6 weeks or so and wish there was a more fluid way to approach it. Since I'm just swinging from mildly hypo to mildly hyper, I'm not that worried about playing around with my dose a bit on my own. My blood will be retested in early October when I see her next as it is.

Any thoughts?

[maillotpois]

Since I'm just swinging from mildly hypo to mildly hyper, I'm not that worried about playing around with my dose a bit on my own. My blood will be retested in early October when I see her next as it is.

Any thoughts?

I self-adjust my medication pretty often. My weight fluctuates 20 pounds depending on how much I am riding, how well I am monitoring eating, etc. And since thryoid dosing is weight related, it has an effect. What about breaking the pill and taking half?

I let mine get out of control this year - I got sick and didn't ride in the spring, gained some weight, started feeling very tired and didn't even think about it. Had blood work done 2 weeks ago and TSH is 8! Working on upping the dosage, taking it at night when it won't be interfered with by morning latte, etc. I don't know why I didn't get it checked sooner.

Blueberry on your original question - I think if YOU Are having symptoms at those numbers you should treat it. I don't know that others' experiences are going to be as helpful - and it is certainly a jump from your normal range.

[indysteel]

I self-adjust my medication pretty often. My weight fluctuates 20 pounds depending on how much I am riding, how well I am monitoring eating, etc. And since thryoid dosing is weight related, it has an effect. What about breaking the pill and taking half?

I let mine get out of control this year - I got sick and didn't ride in the spring, gained some weight, started feeling very tired and didn't even think about it. Had blood work done 2 weeks ago and TSH is 8! Working on upping the dosage, taking it at night when it won't be interfered with by morning latte, etc. I don't know why I didn't get it checked sooner.

Blueberry on your original question - I think if YOU Are having symptoms at those numbers you should treat it. I don't know that others' experiences are going to be as helpful - and it is certainly a jump from your normal range.

Thanks for chiming in. I could split the dose pretty easily. It's a 25 mcg does (which is quite low as it is). I think I might start with taking 5 days of my regular dose and two at a half dose and see how I feel. I'd love to see how I feel at about a 1.0 TSH. If I could just sleep through the night, I'd be thrilled.

Of course, there's also a chance that I wasn't really in remission for my Graves' Disease and it's starting to rear its ugly head. I sure hope not.

Stupid thyroid!

[lisathew8lifter]

hello,
i have been on thyroid meds for years, and i was at 3.92 for TSH. i felt so much better after starting the meds and i lost weight and was able to keep it off for awhile. my tsh now is at about .16 and i'm not entirely sure how i feel about that. finding an endocrinologist that will listen to me is very difficult and i've already switched to the top doc here in MN. i don't feel like going through a bunch of bs to try to find another one, only to wind up with one i like less.

[Catrin]

In my experience, once those levels get off it can take some time to get them back on track. Now I must also say that I don't HAVE a thyroid so my experience may well not be the norm.

It is hard to be patient with something that makes you tired, or that keeps your heart racing, or...any of the myriad symptoms of thyroid problems. It is good that there is so much information available these days and you are able to take a more proactive role in your treatment. Back in the early 80's when I had out of control Graves there was much less information available.

[indysteel]

I think what I'm finding is that I must be extremely sensitive to the meds. I was on a tiny dose of anti-thyroid meds, and it quickly put me in a mildly hypo state right from the get go. We reduced to the point of negligible and I was still hypo. The same thing is seemingly happening on Synthroid. So, I'm just going to play around with it in the five weeks before my next appointment and see if I can't find a happy medium. The good news is that I'm mostly fine at my current level, but my hair is frustratingly limp, I'm waking up too early and I sometimes feel jittery. That's still an improvement.

[Catrin]

I think what I'm finding is that I must be extremely sensitive to the meds. I was on a tiny dose of anti-thyroid meds, and it quickly put me in a mildly hypo state right from the get go. We reduced to the point of negligible and I was still hypo. The same thing is seemingly happening on Synthroid. So, I'm just going to play around with it in the five weeks before my next appointment and see if I can't find a happy medium. The good news is that I'm mostly fine at my current level, but my hair is frustratingly limp, I'm waking up too early and I sometimes feel jittery. That's still an improvement.

(((Indy))), that doesn't sounds like much fun - hope this calms down over your vacation. That jittery feeling is for the birds :(

[indysteel]

(((Indy))), that doesn't sounds like much fun - hope this calms down over your vacation. That jittery feeling is for the birds :(

Thanks. I think it'll be okay. I just need to experiment. I just wish you could test your TSH in the same way you can test glucose and make adjustments on the fly. Even though I think my HR has been running a few beats higher, I've had zero exercise intolerance, so that's good. Last year, it was a little touch 'n go.

To anybody else (Blueberry and Red) reading this who is just starting out on this journey, I think it's important to make note of how you're feeling day to day as you get your levels stabilized. It will help you determine your ideal level. Don't dismiss even mild symptoms, because they can be telling.

[Blueberry]

Thank you all for responding. I'm really hopeful that I'll start feeling better once medicated, as I've felt bad for a long time and I have not accepted that I just feel like this. I do plan to ask for treatment - but I wanted to be as armed as possible as I fear that docs will have a tendency to say "don't treat" at these levels.

So...would you stick with primary care, or go ahead and make a back up appt with an endocrinologist?

[indysteel]

Thank you all for responding. I'm really hopeful that I'll start feeling better once medicated, as I've felt bad for a long time and I have not accepted that I just feel like this. I do plan to ask for treatment - but I wanted to be as armed as possible as I fear that docs will have a tendency to say "don't treat" at these levels.

So...would you stick with primary care, or go ahead and make a back up appt with an endocrinologist?

I'd start with a primary care doctor myself, but that's probably because I'm not a huge fan of my own endo. :rolleyes: Do you have any reason to believe you might have an autoimmune disease, e.g, do autoimmune issues run in your family. If you thinks it's just a straightforward case of hypothyroidism, then I don't know that you'll gain much from talking to an endo unless your PCP just refuses to treat (which I actually doubt). The treatment is relatively straightforward. It arguably would be helpful that whoever sees you runs a comprehensive blood panel and looks at more than just TSH. This is what I've struggled with in terms of my own endo.

I'd add that endos can be really hard to get into (they're busy treating diabetics for the most part), so even if you want to be seen by one, it might not be for some time.

[maillotpois]

So...would you stick with primary care, or go ahead and make a back up appt with an endocrinologist?

I went to both when first diagnosed because they wanted me to get ultrasound, biopsy, etc., to make sure there wasn't cancer. Now I stick with my primary (who also has Hashimotos). I'd stick with your primary IF you feel you are getting proper service and attention to your concerns from primary or the primary's sub you are seeing this month. If not, then ask for a second opinion.

[redrhodie]

I'm generally feeling better, but my hair is still falling. Has anyone dealt with this, and had it grow back once your numbers were good? I freaked out a few days ago, and almost cut it all off myself in a fit of turmoil. Luckily I stopped myself because that definitely would have made things worse. It seems to have slowed a bit since then, but it's still too much. Give me hope if you can. I am still thinking of cutting it all off (by a pro) but if it's going to improve soon, I would rather wait. I'm afraid shorter will look worse. Love my helmet these days!

Other than that, I feel like I have more energy. I've been sleeping better. I haven't needed to nap in the afternoon as much and I've been able to make it through my favorite shows without falling asleep. My weight and appetite are the same. All good.

[indysteel]

You should see some improvement in your hair as your numbers improve. When do you get your labs done again? It might take one or medication adjustments before you get your numbers in a good place.

[redrhodie]

More labs in a month. I know, 2 weeks isn't enough time for the drug to even work yet. I need to be patient.

[indysteel]

I understand your frustration and impatience. Believe me. Just hang in there. Hopefully, you'll continue to see improvements.

[Catrin]

+100 on what Indy said. It IS frustrating waiting for improvements to come, especially when something like hair loss is going on. Hopefully you will see more improvements soon!

[snapdragen]

Y'all are jinxes. :) I've been on thyroid meds since I was 20, with no issues. The last few weeks I've been having these weird semi-panicky feelings. Did a vague web search, it sounds like I may be getting too much synthroid. I get my blood work done in a few weeks, so we'll see.

Now stoppit!!

(I've recently lost about 10 pounds, so maybe the weight loss is affecting my levels.)

[indysteel]

Was that weight loss intentional, Snap? Or did the pounds come off easier than you expected? Certainly, too much thyroid hormone can induce weightloss. I'm glad you're getting your levels checked.

[redrhodie]

You know what? My eyelashes seem fuller. Looking back, that was the first thing that I noticed getting skimpy. Maybe the first to go is the first to grow back. I'll take it as a sign things are improving.

[snapdragen]

Was that weight loss intentional, Snap? Or did the pounds come off easier than you expected? Certainly, too much thyroid hormone can induce weightloss. I'm glad you're getting your levels checked.

It's intentional, I'm on Weight Watchers. My doctor checks my levels about every 6 months, they've been steady for years. It will be interesting to see where they're at.

[indysteel]

Good job on the weight loss. The new WW must really work (if you work it). Everyone I know has done really well on it.

[snapdragen]

Good job on the weight loss. The new WW must really work (if you work it). Everyone I know has done really well on it.

Yeah, once I actually started paying attention to it, a miracle happened, I started losing weight. :rolleyes:

[maillotpois]

Good for you, Snap!

[wackyjacky1]

I've been on thyroid meds for two years now (Levothyroxine) since my doctor first noticed my levels were low. I had all the symptoms -- extreme fatigue, unable to lose weight, etc. Two years later...still the same. No change whatsoever, even tho my doc says my levels are fine. It's the fatigue that I can't deal with. I make it through the day at work (which is a very physically active job, btw) and once I get home, that's it -- I'm done for the day. I can barely muster the energy to take a shower. It's awful!

I've complained about this fatigue to doctors for literally 25 years. I would tell them, "It can't be normal to be this tired!" In response, I always got, "You need to exercise more," "You need to lose weight," etc., etc. I have always been pretty physically active, and believe me, if I wasn't so darn tired all the time, I'd be even more active.

I recently made an appointment with an endocrinologist, but they can't see me 'til late October. I did this because I have heard that even though your numbers may read in the "normal" range, what is "normal" for one person may be hypo (or hyper) for another. It seems to be very individualized. My regular doc has kind of thrown up her hands in resignation, so I'm going to get it checked out by a specialist.

Has this happened to any of you? Are your levels so-called normal, but there's been no relief from the symptoms?

[indysteel]

What levels is he testing, wackyjacky? If it's only TSH or T4, then you may have an incomplete picture. T4 has to be converted to T3 to be usable, and some people have a problem with conversion. In the very least, I would talk to your docs about taking a combination, T3 and T4 drug. Of course, hypothyroidism is just one cause of fatigue. Has your doc explored other causes? Finally, I'd note that there is no one right level for everyone. It could be that you need to be closer to the low end of normal with respect to TSH (remember that the lower the TSH value, the less hypo someone is).

[wackyjacky1]

Hmmm, I have no idea what has been tested and what the numbers are. All she says is that my thyroid level is normal. Never thought to ask for specifics. D'oh!

She started me off at 25 mcg Levothyroxine, and after several months when I told her that I felt exactly the same, she doubled it to 50 mcg. Made no difference. To her credit, this is the first doctor that has paid any attention to my complaint of extreme fatigue. I think she just doesn't know what else to do. She tested my Vitamin D level; it was fine. She gave me a B12 shot; it made no difference. I'm not anemic. Other than perhaps chronic fatigue or fibromyalgia, I don't know what else could be going on. I recently heard about something called adrenal fatigue; I have some of those symptoms, but who knows.

[indysteel]

Ask to see your labs so you at least know what has been tested. If she's only tested for TSH, ask her if she could be willing to order a the appropriate tests for Free T3, Free T4 and for antibodies (there are several panels that would need to be run). Of course, she may not know how to intepret your results, so I'm not sure where that will get you. If nothing else, discuss these tests with your endo.

Here (http://www.thyroid-info.com/articles/woliner.htm) is a link that might help you better understand why it's important to test more than just TSH and why, even when TSH is normal, there may be something else going on, e.g., an automimmune disease.

I'll admit that I've had my own frustration when it comes to getting appropriate testing from my endo. Just because they're an endo doesn't mean that they get thyroid disease any better than a GP. So, if you get resistance or he/she isn't willing to explain things to you, get a second opinion. That's sort of where I've been for a while myself.

[wackyjacky1]

Will do. Thanks for the advice.

[Red Rock]

Well...I thought I would come by and let everyone know that my continuing saga is continuing. After a few months with the endo, there were no conclusive actions taken. My numbers have not soildified themselves. TSH is low at 0.01, T4 is 1.3 (normal) and T3 is 4.2 (high end of range but ok). He tested another immunoglobulin/antibody and it is 27.6 and 16% higher than normal.

From the reading that I have done, to me, this looks like Grave's. The only possiblility is if the T3 continues and kicks over above the "normal level". Then my doc might do something. I don't know what else to do because my body has not committed itself, so it is making my life difficult to say the least. I do know that I have been becoming an insomniac and certainly more irritable, nervous, anxious..etc. Not until I stopped to think about it that it would be related to the thyroid. Oh joy. I have totally given up coffee. My exercise is not what it used to be. I'm lucky to walk for 4 miles these days. It's the high heart rate that scares me, so I don't want to push it . I hope that does not sound terrible. I want to be my normal self and be able to go exercise like I used to before I turned 40.

Good luck to those in all of your processes. Red, I'm glad your on meds. Hope it all works out for you.

That's my story at this point.

Red Rock

[redrhodie]

Good luck to those in all of your processes. Red, I'm glad your on meds. Hope it all works out for you.

That's my story at this point.

Red Rock

Thanks Red Rock. I'm feeling great. I see how lucky I am to have a diagnosis. I feel for all of you who are struggling with this. I hope you all get properly treated. I didn't know how bad I felt until now that I feel good, so if you're aware something's wrong, you must really feel terrible. Don't give up.

So here are some of the changes I've noticed already: I have more energy. Twice this week we've gone out after work (after commuting)! That's huge for me. My skin is super soft like a baby's. I'm getting visited by Mr. Sandman when I sleep, getting that little crust in the corners if my eyes. I don't think I've had that for years, and I don't know exactly what it means, but it seems like a good thing. I've stopped needing naps. My blood pressure is back to normal (it had been high recently). The depression is gone! My neck doesn't hurt anymore. I can sleep without socks. My hands are warm. I am happy again.

The only thing left is for my hair to grow back. It sucks that I've lost so much, but if it didn't happen, I wouldn't have gotten diagnosed. It's also helping me gain compassion, so that's another silver lining.

[redrhodie]

Blueberry, I read on another thread that your appointment was today. How did it go?

[Blueberry]

Blueberry, I read on another thread that your appointment was today. How did it go?

Thanks for asking:) I've been trying to figure out how to best express my frustration:( The new doc I saw is actually a 3rd year resident (DH googled her after I got home, frustrated). She talked a lot about treating the "whole person" not just the numbers, did no physical exam (including even feeling the thyroid) She listened to nothing I said about the correlation between my levels and how I'm feeling and, instead decided that I need therapy because I'm depressed (been there - not going on right now - or at least not to a serious degree) and a sleep study (no indication of sleep apnea other than thyroid related symptoms). I have nothing against either one of these things - they might be a good idea (I think most people could benefit from therapy) - but that's not why I came to her. There's a level that's not normal for me that could well be causing all symptoms. She said she wouldn't do anything to deal with whether it could be an autoimmune disorder unless my symptoms get a lot worse (she had mentioned that early on as a possibility). She couldn't tell me what levels she routinely treated. The person who made the 'scrip decision is her supervisor, who never saw me (she had to check with the supervisor to make sure she could medicate).

The only good news is 1) I did manage to get a prescription out of her, despite her doubts that it will help (there's nothing to contraindicate it - and my ob-gyn - who listens better, has treated me for a long time and is awesome - recommended it) and 2) I managed to get an appt with my real doc for my follow up in 2 weeks. So - I'm supposed to take 1 25mg tablet for a week. If I don't feel better, bump up to 2 (50mg). I go back in just over 2 weeks.

I really, really hope that if I make it all the way to medical school and become a doc that I'll not send patients home feeling like I do right now.:(

[indysteel]

Wow. I'm livid for you, Blueberry. That's just ridiculous. Can you talk directly to the supervisor?

At least you did get a script, although I do wonder about the instructions to increase the dose after just two weeks. I can't remember how long it took for me to feel better, but I do know that at about the six week mark, I started to feel a bit hyper, so I have to wonder whether you feel the full effect of the dose at two weeks. If you do increase the dose, just be mindful of hyper symptoms (insomnia, anxiety, heart palpitations, increased appetite, diarhea, just to name a few).

[Blueberry]

Thanks, Indy. I'm actually supposed to increase after 1 week:eek::eek: I didn't think that was enough time, but I'll only be at 50, so maybe it's OK. Ack. I'll probably talk to my regular doc about what happened.

[indysteel]

I'm having a hard time getting my head around your experience. I've found communicating with my own endo frustrating, too, and I've sometimes wondered what the heck they're teaching the about thyroid disease. One and two weeks seem like really short periods by which to assess how the drug is working. My testing is every six weeks at this point.

Consider finding a new doc or having your family doc treat you.

[redrhodie]

Jeez! So frustrating. Changing doses after a week sounds contrary to everything I've read. At least you got the script. I hope it helps.

I really get the sense we're on our own dealing with this.

[Blueberry]

Thanks:) And I agree we're mostly on our own.

This was the stand in for my primary care (she was booked and I couldn't get an appointment with her). I see my regular primary care in 2 weeks. If I don't feel like she has a great handle on it, I'll self refer to an endo and see what happens there. Of course, the doc yesterday said she wasn't giving me any refills, but actually called in 11 refills of 30. So - at least I have more time to get things worked out and find a doc who will listen.

[Red Rock]

Blueberry...gosh, what can I say. I feel for you. I have been on my own thyroid roller coaster now for two years. Only the last year dealing with an endo, who I seem to get a long with, which is nice. He has actually explained things to me so I understand, which is much better than what my regular doc does not do so well. When I say that you would be changing doses after a week, I was a bit shocked to say the least. All the reading I have done, no matter what your taking, seems to be about a month or more before you might "start feeling better." I hope your regualr doc can help you in the meantime while you look for someone else who will help you get better.

My story...I spoke with my docs office today and my recent results suggest, I'm boarderline Grave's so I'm going back to the endo this week. So does anyone have any input they can help me out with in what my next best options are. Is it safe to assume that I would be put on meds? Since I'm still boarderline can I request meds so I can feel better? Or should I just sit tight and wait to see what happens when I visit the endo?

Sending everyone postive energy...thoughts your way to help you all feel better.

Red Rock

[indysteel]

Red Rock, if my experience with subclinical/mild Graves is any guide, there are a few ways to approach it. You can just wait and see if it worsens but otherwise do nothing; you can go on a minimal dose of am antithyroid med; or you can on a beta blocker to control your symptoms. I was not a candidate for the latter because my bp is low. I went with the second option, and I did get better in the sense that my hyper symptoms lessened, but it also put me into a hypo state, despite repeated dose reductions. I'm no longer on them, and we're waiting to see if I'm in remission. For the first few months after going off them, I was still mildly hypo, so I started taking a small dose of synthroid. I feel hyper again to dome extent and it's unclear whether I just need to reduce my synthroid dose or if I'm not really in remission. Basically, whatever route you take will require repeated bloodwork. It's been a frustrating journey to say the least.

Do you have a definitive Graves' diagnosis? There are some diagnostics that I don't think you've had that you should arguably talk to your doc about. One is an ultrasound. That helps rule out cancer and nodules. Another is a radioactive uptake scan. For this test, they give you radioactive iodine and then take two different images of your thyroid and measure how much of the iodine the thyroid has used.

Finally, if it is Graves, I would consult with an opthamologist to see if the disease is affecting your eyes. This is another effect of the antibodies present with Graves. They can attack both the thyroid and the eyes.

[Red Rock]

Indy, thanks for your response. I have had the uptake scan earlier this year with the endo. The rest has been blood work. From what you say, it sounds like the antithyroid med would be the best option. The endo and I had previously talked about putting me on a low dose of a beta blocker. I came home and read about them and thought no, that looks scary. Really what is finally happening, I think, is that the right tests have been done so that there is a proper dx. I really don't want to be wandering around like I am, feeling like I do. I have been an insomniac this summer, as well as, beeing really nervous, anxious and things like that. I'll repost after I visit with the endo this coming week.

One other thing, has anyone with thyroid problems had other autoimmune problems too, like gluten/celiac disease?

[e3rdpower]

Yes, Hashimoto's and celiac. Autoimmune issues tend to travel in groups. unfortunately.

[Red Rock]

Thanks, e3rdpower. I have since done some more reading on the net about the whole thyroid gluten connection. Since I am mild hyper/Graves, it makes me wonder whether I should go gluten free. I have not mentioned that my brother has gone gluten free and his symptoms have all cleared up. He has done no bloodwork and does not have any thyroid issues. I'm the one with thyroid issues. Lucky me. So I'm half thinking that I see how the visit goes this week and perhaps mention this to the endo and see what he says. Not sure if it would be better to have the thyroid sort of under control before looking at gluten stuff.

Red Rock

[Red Rock]

Indy..When you went on Taprozole (I'm assuming, which is not good.) how long until you felt "normal". I'm to the point where I can't wait to go talk to my endo right now. I actually woke up hungry/light headed from not eating over the night. I had a normal dinner. I can only attribute it to my currently super speedy metabolism. I had my normal breakfast of oatmeal with either almonds or walnuts (I alternate), wheat germ and flax plus some chia seeds, then on top of that one small/average banana. I usually feel full after eating and right now I can't tell that I have.

How have you all dealt with exercise? Over the last two years, I have had this high HR when I exercise, so to avoid this I have just gone to walking so I don't put myself at such a high rate. I miss riding my bike for sure.

Another strange question...how can you go from hyper/graves to hypo/Hasimotos or just hypo? How does the body make that switch?

Is there a limit or no limit on how long someone could take this Taprozole or any other antihyper med?

Thanks for helping me out with all of this and my crazy questions. I will keep you all posted.

Red Rock

[indysteel]

Red Rock, if I understand correctly, sometimes Graves can burn up your thyroid to the point of making it underactive. But I'll be honest that I've never fully trusted my end's conclusion that I have Graves. I have to wonder if it's Hashi's instead, which can alternate between hypo and hyper. I keep putting offf getting a second opinion, but the utility of one is always in the back of my mind.

I felt better relatively quickly on Tapazole. Two to three weeks? There is some dispute over how long you can take them. In Europe, anti-thyroid drugs are much more commonly used to control hyperthyroidism. In the States, RAI is more common, although I think that's changing. For some, use of the drug causes remission. The average time it takes is 18-24 months. That's another reason I wonder if my dx was correct in that I apparently went into remission quickly. There are side effects you must watch out for though.

I continued to ride through all of this, although I was experiencing some degree of exercise intolerance. I stopped running for a time though. I fully resumed regular exercise with a couple months of starting the drug.

I've read a bit on a Q & A forum run by a woman named Elaine Moore, who has written on thyroid disease. After reading any number of questions, I've come to the conclusion that the average doc--even endos--don't fully understand the disease and/or don't spend sufficient time with their patients to access what's happening to their bodies and why. I have never felt fully comfortable or confident in my treatment and have felt discouraged when I've tried to get better explanations. I've more or less taken the path of least resistance in the end. For instance, six weeks after going on synthroid, my labs suggested that I was veering again toward hyperactivity. A nurse called to tell me that the doc was happy with my levels and instructed me to keep taking the same dose. Well, no one asked me how I actually felt. I had every reason to talk to the doc about it, but instead I just started adjusting my dose myself. I'm just kind of tired of the whole thing. I really feel for anyone who has Graves really badly. I've never felt worse than a bit "off." I can't imagine how frustrating it would be to feel really sick. My sister had Graves really badly and it was initially diagnosed as a panic disorder.

I wish I had an answer to all of this. The link between autoimmune disorders scares me. I'm convinced my mom has been sick with something for a long time--fibromyalgia to be specific--but she refuses to admit that the disease even exists. I worry what else might come my way.

[e3rdpower]

Thanks, e3rdpower. I have since done some more reading on the net about the whole thyroid gluten connection. Since I am mild hyper/Graves, it makes me wonder whether I should go gluten free. I have not mentioned that my brother has gone gluten free and his symptoms have all cleared up. He has done no bloodwork and does not have any thyroid issues. I'm the one with thyroid issues. Lucky me. So I'm half thinking that I see how the visit goes this week and perhaps mention this to the endo and see what he says. Not sure if it would be better to have the thyroid sort of under control before looking at gluten stuff.

Red Rock

I would definitely mention it to your endo. Hopefully, he will write for the antibody tests (blood) which can assist in diagnosing celiac. However, even if that comes back normal I would go ahead and try gluten free, as many times the testing can be flawed, especially since your brother is feeling better. Don't change anything until you test, though. Gluten (whether through celiac disease or non autoimmune gluten intolerance) and autoimmune disorders are very highly linked.

[Red Rock]

Thanks Indy and e3rdpower for your input. Now I at least have something to go on before meeting with the endo. I will try to relax between now and the meeting.

Red Rock

[redrhodie]

http://www.netplaces.com/thyroid-disease/

You guys will find this helpful. I don't know why I didn't find it sooner. The section on how the rest of the endocrine system can be affected is really interesting.

[indysteel]

Thanks for posting that, red. I'm going to have to spend some time with all that information; it looks really helpful.

[Red Rock]

Well it's been a week since I saw my endo. I am on 10mg of methimazole once a day. I noticed immedate improvement the next day after taking my first dose. I would say that I am almost back to normal. I am still sluggish and needing some extra sleep. Not sure if this is a side effect or my body wanting to rebalance, which will take some time. I am not as fatigued as I have been. My sleep is getting better, gradually. At least I'm not wide awake at 2-3 AM. My food consumption is a little bit up there still. I have been craving protein and food, in general, since right before my appt with the endo. I think it is tapering off though, so that is good.

Oh..I did a walk the other day and my heart rate is still up there/high for my comfort level. I'm hoping as time goes by, that the HR will come down so I can exercise comfortably.

My endo wants to see me again in a few weeks (before T-day) after another blood reading.

So that is it for now.

Red Rock

[indysteel]

I'm glad you're feeling better. That was my initial dose, too, if I recall. All I can say is watch your diet. It's easy to put on some weight as you become less hyper. I put on five pounds in the blink of an eye!

[redrhodie]

I had my 6 week follow up the other day. New blood test revealed my tsh at .68 (it was 6.7 when I started meds) so my dose is staying the same. Yay. I can tell my NP doesn't really know much about thyroid, but so far I'm feeling great, so haven't requested a referral to an endo. She also ran labs for a bunch of other stuff including iron, b12, and iodine. Now that I've looked at the symptoms of anemia, that seems to fit the dizziness I get when standing, and anemia and hypo seem to go hand in hand.

Yesterday I rode my first group ride since learning I'm hypo, and it was great. I felt so much better on the hill (there's really only one on this ride). I didn't even get out of breath. I felt great all day, too, not exhausted like before.

Blueberry, how are you doing? Any changes?

[indysteel]

You might also test for adrenal insufficiency, Red. Dizziness upon standing is a symptom of that.

[redrhodie]

You might also test for adrenal insufficiency, Red. Dizziness upon standing is a symptom of that.

Yeah, I thought about that. If the iron tests normal, and the dizziness persists, I'll see an endo for testing. I think with adrenal insufficiency, the dizziness gets worse when the thyroid is treated, and mine has definitely gotten better. So hoping it's not that!

[indysteel]

I get dizzy with dehydration and/or electrolyte depletion. Are you dizzy all the time or does it come and go?

[redrhodie]

It comes and goes, but there have been periods when it's been very frequent, like a couple of months ago it would happen daily. It could be so many things. When you start looking at the symptoms of different conditions, you realize they're all the same. That's probably why thyroid disorders are so frequently misdiagnosed.

But at least I feel better! I know how lucky I am to have gotten the right dose of levothyoxine on the first try. I felt better right away.

[Blueberry]

I'm feeling a little better - sort of hard to tell because school is a bear right now (lots of exams/reports), so lots of stress and not quite enough sleep. But - I've not had very many days where I feel truly terrible. It's only been 2 weeks, so I'm trying not to be too impatient!

I did not double the dose at 1 week because I don't think that's enough time for the drug to really work. I see my regular doc tomorrow, and we'll see what she has to say. I'm hopeful she will have some dosing insight. I doubt that 25 micrograms is sufficient, particularly given my weight. Will report back (though it might be later in the week with exams....).

[Blueberry]

Just saw my doc - popping in for a quick report. I'm always glad when I see her, and I'm always reassured that I've made the right decision to change to her. She was 100% behind my decision not to double after the 1 week because (as we all know) it takes 6 weeks to feel better. I have an appointment in 4 more weeks (6 total on meds) for blood work (thyroid and vit D - her idea, and I think a good one), then a follow up appointment with her to adjust dosage if needed. She did a brief physical exam - nothing odd on the thyroid - so yay! She says my feeling better already is a great sign. She definitely seems to work hard to understand thyroid conditions, but acknowledges that they can be hard for primary cares to "get." I do think she gets it, and don't plan to go to an endo right now - I get the feeling she'll suggest it if needed.

I brought another copy of my chart with my historical values. She verified she couldn't get the data out of the computer, and then copied it into my chart. She thought it was very helpful because it shows trend data for me - and a definite difference. And my BP has gone from borderline high to perfectly normal. And I've lost 2 pounds despite an admittedly bad (by my standards; not for most people) diet for 2 weeks. Back to studying!

[emily_in_nc]

That's really encouraging news, Blueberry. Glad you found a doc you like and feel like you can trust. That's so important!

[indysteel]

The roller coaster that is my thyroid continues. My latest bloodwork shows a TSH of .004. So, i'm back to being hyperactive. Way hyperactive. Just to recap: I went on methimazole in August of last year after being diagnosed with Gravaes. It promptly put me into a hypo state, no matter how miniscule the dose. My doc finally took me off of it to see if I was in remission. Even after I stopped taking it, my TSH was still in the hypo range. I was tired and down all the time. So, she put me on Synthroid in July. At the six-week mark, my TSH was .6, i.e, getting close to hyper (which is generally considered .3). I continued to dose, although some days I would only take half a pill because I was started to feel kind of hyper. I saw the endo again this past Friday, and my bloodwork shows that I'm definitely hyper again. I'm not supposed to take the Synthroid again. I talked to her nurse and asked for a full blood panel order, i.e., Free T3, Free T4, TSH and my antibodies testing, in four weeks time. She's going to talk to the doc. I honestly have to wonder if I have Hashi's not Graves. Whatever I have, I can't seem to find normal anymore. And I'm beyond upset about it. Sobbing uncontrollably upset. I don't know who I am anymore or what I'm supposed to feel like.

Clearly, I need to get a second opinion. I just wish someone could explain what's going on to me.

[Catrin]

Oh Indy, I am so sorry that you are on this roller coaster and hope your endo (or another one) can help you figure this out sooner rather than later!

[indysteel]

Thanks, Catrin. I do, too.

What really pisses me off is that this ruined an other lovely day off. I had just gotten home from Brown County and my first MTB ride since I rode with you. It was a great day for it. The trails are in okay shape. You can tell that between the erosion of the summer drought and the recent rains, they've deteriorated to some degree. Roots and rocks are more exposed. Most of the trails were dry, but I had to ride through a small stream near the end of the NTL.

Okay, I'm stopped sobbing for now. I haven't cried like that in ages. It was cathartic.

[Catrin]

Thanks, Catrin. I do, too.

What really pisses me off is that this ruined an other lovely day off. I had just gotten home from Brown County and my first MTB ride since I rode with you. It was a great day for it. The trails are in okay shape. You can tell that between the erosion of the summer drought and the recent rains, they've deteriorated to some degree. Roots and rocks are more exposed. Most of the trails were dry, but I had to ride through a small stream near the end of the NTL.

Okay, I'm stopped sobbing for now. I haven't cried like that in ages. It was cathartic.

Sounds like the cry was needed, and hopefully things will go up from here.

I am not surprised the trails show the effect of the drought plus hard rains. I was there last weekend, but only rode Pine Loop and about half of the NT Connector with someone new to the trails there. I didn't notice anything, but then again those are the trails with the most gentle grade and Pine doesn't have any roots or rocks to speak of. Hoping to get some riding in Friday and Saturday before the Breakdown.

[redrhodie]

Oh, Indy, that really sucks. It's so hard waiting for time to pass so you can re-test, especially when you feel badly.

I wish I could do something for you. Virtual hugs are all I got.

[Blueberry]

Indy-

I wish I had words of wisdom to offer - just lots and lots of sympathy. Feel what you need to feel, and then move forward with finding a doc to give you a second opinion.

[redrhodie]

Indy, what dose of Synthroid were you on?

[indysteel]

Thanks, ladies. Virtual hugs are most welcome.

Red, I've been on 25 mg--I think the same as you. It's weird, because I actually feel okay these days. I don't sleep real soundly, and my HR has been elevated a bit with exertion. Resting HR is just fine. I haven't felt the crazy anxiety/irritability that I initially felt when first diagnosed. This is why I'm going to insist on a full blood panel. The antibodies associated with Graves can skew TSH; it's really better with autoimmune related thyroid disease to dose from Free T3 and Free T4 levels. I'd really like to see where those are. Of course, if my endo appreciates that distinction, she's never let on. Ugh, I need to find a new doc.

[Crankin]

I wish I could help, Indy. I know nothing about thyroid disease, except that after reading all of these threads, sometimes I think this is what my real problem is.
I know I have enlarged thyroids, but after 3 years in a row of ultra sounds and no change, my endo said to take a break. She's the same one treating my osteoporosis, so I think I may talk to her. My borderline high bp, only at times, when most of the time it's low, and my semi- high HR when exercising (not scary high, but high) makes me wonder. All of your experiences doesn't make me hopeful that she even knows anything, but I may look into this. Generally, I like this doc and she takes a lot of time with me when I go in for the bone issues.
Keep us posted. Crying is good.

[redrhodie]

Thanks, ladies. Virtual hugs are most welcome.

Red, I've been on 25 mg--I think the same as you. It's weird, because I actually feel okay these days. I don't sleep real soundly, and my HR has been elevated a bit with exertion. Resting HR is just fine. I haven't felt the crazy anxiety/irritability that I initially felt when first diagnosed. This is why I'm going to insist on a full blood panel. The antibodies associated with Graves can skew TSH; it's really better with autoimmune related thyroid disease to dose from Free T3 and Free T4 levels. I'd really like to see where those are. Of course, if my endo appreciates that distinction, she's never let on. Ugh, I need to find a new doc.

Is 25 the lowest? I'm on 100 mcg.

I know what you mean about the doctor. I'm just seeing an NP, and I know she doesn't know much about thyroid, but it seems like a crap-shoot with doctors anyway, and who knows if the next one will be better. I'm keeping my fingers crossed that I keep feeling well. My hair is still an issue, and that will be the thing that gets me to a specialist if it doesn't show some improvement in another month. Patience is required with thyroid problems even once your levels have normalized, and a bit of determination is needed just to get diagnosed. After that, I hear it gets better, so don't lose hope.

At least you're not alone!

[indysteel]

Yep, 25 mg is the lowest. What's so weird is that I am seemingly really sensitive to both drugs, even at really low doses I don't get it. That's why I want her to look at Free T3 and T4.

[indysteel]

Insert stream of expletives. When I talked to my endo's nurse yesterday about getting a lab order that included more than just TSH, she said she'd talk to the doc and get back to me. Well, she just got back to me and it was clear from the response that even if I get the labs done, the doc isn't interested in using them for treatment purposes. So, what's the point? I told the nurse that I just didn't think the doctor and I are on the same page and that I was going to find a new doctor. I then (after I stopped crying again) left a message for my internal medicine doc for some additional referrals and asked for some help in the meantime sorting myself out (mostly because I anticipate that it will be a matter of months before I can see anyone). She offered to do that when I saw her in June and explained that I felt like my endo and I were just not communicating very well.

I've really got to get it together though because as much as I find crying cathartic, I can't be doing it at work. I was lucky to be off yesterday for Columbus Day, but I can't have a repeat today.

[e3rdpower]

So sorry that you're getting the run around. Free T3 and Free T4 along with antibodies are definitely what they need to look like. Hopefully your internist will order them for you, much sooner than June. It sure sounds like Hashi's.

[indysteel]

My problem with my endo's fixation on TSH is this: The antibodies at play in any form of autoimmune thyroid disease can skew TSH. So, it's important to look at Free Ts. It's not uncommon for TSH to be suppressed in Graves' patients even when their other values are ideal. But her nurse said something about how my disease was so "mild" that it wouldn't show on the Free Ts. That just doesn't make any sense. And if it does make sense, I'm just at a point--in terms of my lack of confidence--that I'll need to hear that from someone else.

[redrhodie]

I think this is a good thing, Indy. You gave this doctor a lot of time to try her way. Time to move on to someone who will listen and do the appropriate tests. At least you PCP seems helpful. Maybe once you get the referral, you can get on a call list for cancellations if you can't get an appointment soon.

[evangundy]

I have been going back and forth with my pcp about my thryroid, for the past couple years. I was diagnosed with Hashimoto's by my previous doc. Besides his training (osteopath) he had to learn more about the issue when his wife was diagnosed. Turned out I was having same issues at the same time as his wife. The first few years working with him were wonderful. We had things mostly under control.

Cue peri-menopause ..... hormonal changes, weight gain, serious illness, fibroid tumors requiring partial hysterectomy. all in one year. Caused some body changes that my thyroid didn't like. then my doc retired. Then my husband retired so had to change health care providers. Then I changed jobs and again a new provider. New doctor does not really understand thyroid stuff.

I finally have an appt with an endo next week. One of the things both doctors recommended was to be wary of where on the internet I got my information from. Guess I won't tell them about the TE forums :-)

They both have recommended the information found at http://www.thyroid.com/ and at http://www.mayoclinic.com/health/hashimotos-disease/DS00567
Funny how that's where I got most of my info that they are disputing ... grrrr

edit: link wrong for thyroid website above - should be http://www.thyroid.org/
.org instead of .com - interesting difference :)

I'll know more next week. Virtual hugs to everyone - this is no fun but let's work on it together :-)

Edna

[indysteel]

Gosh, Edna. What an ordeal. I hope your new endo is able to help. As for not trusting everything you read on the Internet: I get that, and I try to keep that in mind as I'm reading. But I find the kind of general information found at a site like Mayo to be fairly useless when it comes to understanding anything but the basics. It offers very little guidance on the nuts and bolts of managing thyroid disease.

[redrhodie]

How is everyone doing on thyroid meds these days? I am doing well on mine. My hair has stopped falling out and is regrowing. If anyone has this happen to them, it takes about 3 months to stop once your meds are correct.

Thank God I was diagnosed before my brother's heart attack, because I really don't think I could have handled the stress or the drive to the hospital as I was.

[Blueberry]

I felt great at first, but I'm now feeling really hypo again. To the point that those around me have noticed. Now that I've had a taste of feeling good, I'm not very happy about it!

My doc scheduled blood work at the 6 week mark, and I had it drawn on Friday. It was another couple of weeks before I could get back in with her, so I'll probably get the results just before Thanksgiving (unless she sends them electronically - but I still won't have a new dosage until then).

Glad to hear you're feeling better!!

[solobiker]

I have been having huge problems with sleeping lately. I been a poor sleeper for many years...it has been pretty bad the past couple of weeks. I got to bed around 9/930 and wake up by 2am and can not fall back to sleep. Heck, one time last week I woke up at 11pm. :-( Instead of staying in bed I just get up and ride my spin bike for 45-60 min then start to get ready for work. I am planning on calling the Dr this week to see if I can have my blood levels tested.

[indysteel]

Red, I'm glad your hair has stopped falling out! Yay!

Blueberry, it's not uncommon for the initial dosage to be insufficient. I expect your doc will bump it up for you, but if you're feeling lousy, call her to find out the results in advance of your appointment to see if a dosage change is warranted. There's no reason you should have to wait until she physically sees you.

I've now been off Synthroid for about five weeks. I saw a new endo a few weeks ago. It's too soon to tell whether I'll like her any better than the last one, but she did have a slightly different take on what might be wrong with me. There's a chance I have both Graves' and Hashi's, which might explain why I'm cycling between hyper and hypo. I get my blood drawn in a week, so I'm eager to see where I am. I feel pretty good though. In fact I feel about as normal as I've felt in a while. I've been able to work out nearly every day, I sleep through the night minus my usual potty breaks. I may be slightly hypo, but if I go on synthroid again, it likely won't be a daily dose.

I keep meaning to make an appointment with a nurse practioner recommended to me who does holistic hormone testing. I'd like to know where things stand across the board as far as hormone levels.

[Red Rock]

Well I went to my endo today. So far good/great news. I have been on 10mg of Methimazole. My FT4 and FT3 were within range. So he wants me to stay on my 10 mg until January. Then on 1 January, he wants me to drop the dose to 5 mg and continue until we do another reading in February. See where my numbers are and then either stop(preferred method) or continue in order to keep my levels up. I feel like myself again. That part is the best. Now, I just have to gradually get myself back on the bike and start riding again. I think I have zero aerobic capacity right now.

[Catrin]

It is so good to hear that you are feeling better Red Rock! Yayyyyyy! Have fun on the bike now ;)

[indysteel]

Well I went to my endo today. So far good/great news. I have been on 10mg of Methimazole. My FT4 and FT3 were within range. So he wants me to stay on my 10 mg until January. Then on 1 January, he wants me to drop the dose to 5 mg and continue until we do another reading in February. See where my numbers are and then either stop(preferred method) or continue in order to keep my levels up. I feel like myself again. That part is the best. Now, I just have to gradually get myself back on the bike and start riding again. I think I have zero aerobic capacity right now.

I'm glad you're feeling better. I am curious though as to what you mean by stopping the drug as the "preferred method." Based on everything I've read, most people have to stay on methimazole for at least 18 months to induce a remission, and remission only occurs in about 20% of patients. Typically, once patients get within healthy T3/T4 ranges, they only have to take a very minimal dose of the drug, but some dose is necessary unless and until they're in remission. Some docs are comfortable dosing with methimazole over longer terms; some prefer RAI as a longterm solution.

I'm not suggesting I'm an expert on any of this; I'm only going off nearly everything I've read about methimazole. I came off of it in less than a year, but my situation may be atypical if my new doctor is correct that I have both Graves and Hashis. I'm not really convinced I'm in remission.

[redrhodie]

I hope everyone gets better soon! Good thing we have each other for venting and support.

Solobiker, I had a couple of those sleepless nights this week, so I feel for you. It's really frustrating and exhausting. I hope you find some rest.

[solobiker]

Still no sleep for me.. Grrrrrrr. It has gotten worse in fact. I go to bed around 9ish and wake up at midnight with NO hope of falling back to sleep. They tested my thyroid levels which came back fine so I guess it is not the synthroid doing it. They are no going to check my cortisol levels. I feel like I am on speed all day and night even though my HR is nice low....sitting in the upper 50s at rest at the Drs office. I was just talking with my neighboor and she told me she when through the same exact thing during perimenopause. This may be a possibility as I am nearng 43 years of age and from my research have some other symptoms. Gosh...this really stinks if it is..I have not slept well in weeks. Last night I was up at midnight and just kept watching Star Wars IV over and over again. Sigh...or should I say Yawn..:(

[e3rdpower]

I have Hashi's, and began perimenopause a bit young a couple years ago. My cortisol levels were a bit off, but not terribly. My gynecologist recommended low dose birth control to help regulate hormonal levels, but I was resistant, thought it would get better, and went a year feeling very uneven. My thyroid med levels also needed to be adjusted over this period of time (which makes sense given the interaction of the HPTA axis.) Six months ago I finally gave in a went on a low dose birth control. I am amazed at how much better I feel. My thyroid appears to also have stabilized.
Your mileage may vary of course, and cortisol testing definitely seems indicated, but that was my experience. The thyroid/adrenals/sex hormones are all very interrelated.

[solobiker]

Thanks for your reply. I go back to the Dr for a follow up in about 2 weeks. I really hate this nervousness feeling. It is for NO reason at all. I am just sitting on the couch and it feels like my HR is going a million miles and hour and I am sooooo tired. Tried to take a nap and just could not. grrrrr.

[indysteel]

Solo, what were your specific levels the last time you were tested? What a doc may deem as "just fine" might not be just fine for you.

[Blueberry]

So...I have my bloodwork back, and a visit to the doc schedule on Wed. Apparently she was out of town, as someone else assessed the results as "normal" and sent them on to me. Vit D was 31 ng/mL which is just barely on the border of normal (and I expect might be part of the problem). Tsh was 2.88, and thyroxine was .75. I'll be curious what she suggests. While she was sympathetic when I last saw her (and much better than the other doc I saw), she also said I could not have hashi's because I'm hypo, not hyper. I thought it was one of the main causes of hypo, and that if you had it, tsh had to go lower than normal for successful treatment (ETA: Yes, I have confirmed I'm not crazy. I have e-book access to med textbooks through my university - I'll probably bring a print out with me). In any case.....as shall see what happens wed. I'm still feeling hypo, but not as bad as a couple of weeks ago.

Hugs to all who are dealing with this still!

[indysteel]

You had a doc tell you that you can't have Hashi's because you are hypo, not hyper. Find another doc; she's seriously misinformed. Have you been tested for any of the several antibodies that are associated with autoimmune related thyroid conditions? That's the primary way one tests for Hashi's.

Regardless, 2.88 TSH is still on the high range of normal. Are you still experiencing hypo symptoms? If so, then lobby for an increase in your Synthroid. But, seriously, I have grave doubts about this doc.

[Blueberry]

Yep I really had a doc tell me that, and yep I am still definitely having hypo symptoms. I got better, and then started backsliding. I expect my body was happy for the increase, and then adjusted back some. When I had the conversation about Hashi's, I was asking if we could test for the antibodies, and that's when she said it couldn't be Hashi's. I think after the first doc, having someone listen was such a relief that I didn't react as I should have. Do you happen to know if the tests would still show something since I'm on replacement?

There's a doc who has written about treating hypothyroidism who is close to me. Going to investigate if he's in my insurance. If he is, I might go ahead and make an appointment with him. ETA: crap. Not in my network. It's scary how little some docs know.

[solobiker]

Solo, what were your specific levels the last time you were tested? What a doc may deem as "just fine" might not be just fine for you.

2.0 which is pretty normal as far as I know. I just wish I could get rid of this nervousness feeling. It is not fun at all. Even when I am working out it does not go away. Sigh...

[indysteel]

Blueberry, Synthroid doesn't reduce antibody levels. If it gives any consolation, even if it is Hashi's, the treatment plan isn't really different. You'd still be focusing on TSH levels. It's alarming though because it speaks to her knowledge of the thyroid more generally. In the very least, I'd be prepared to argue that you need a dosage increase.

Solo, I wish I knew the right fix. For some a TSH of 2 might still be too high. Some docs say that 1 closer to normal, but there is some dispute as to how narrow the normal range should be. But you are right to consider other causes. Remind me; is your condition autoimmune related? Sometimes symptoms can worsen when antibody loads go up.

[emily_in_nc]

Also Solo, until you get things straightened out, you might look at taking one Benedryl in the evening before bedtime. They are now marketing it as Zzzzquil, but all it is is Benedryl (probably pricier) -- 25 mg. of diphenhydramine (generic if you can find it). I have sleep issues as well as lots of itchies because of the bugs here (no-see-ums this time of year), so I have been taking it many nights. It's not ideal since it gives me the morning sleepies, but it does keep me from waking up at 2 or 3 or 4 am and lying there ruminating for hours...that SUCKS. Ambien is good too but probably more easily to become dependent on it. During perimenopause, I don't feel bad about needing a little extra help, because insomnia is not productive at all.

[solobiker]

Also Solo, until you get things straightened out, you might look at taking one Benedryl in the evening before bedtime. They are now marketing it as Zzzzquil, but all it is is Benedryl (probably pricier) -- 25 mg. of diphenhydramine (generic if you can find it). I have sleep issues as well as lots of itchies because of the bugs here (no-see-ums this time of year), so I have been taking it many nights. It's not ideal since it gives me the morning sleepies, but it does keep me from waking up at 2 or 3 or 4 am and lying there ruminating for hours...that SUCKS. Ambien is good too but probably more easily to become dependent on it. During perimenopause, I don't feel bad about needing a little extra help, because insomnia is not productive at all.

I actually tried Benedryl and it did the exact opposite..I took it at 9pm, fell asleep and was wide awake by about 1030 that same night. I guess some people it does that to. I have tried Ambien...does not work at all..I have tried it several times without luck. My Dr started me on a different one on Friday...no luck with it yet..I will give it some more time. I just really really want to know what it is like to sleep again. It has been way too long..several weeks.

Sorry for the thread hijack.

[emily_in_nc]

I actually tried Benedryl and it did the exact opposite..I took it at 9pm, fell asleep and was wide awake by about 1030 that same night. I guess some people it does that to. I have tried Ambien...does not work at all..I have tried it several times without luck. My Dr started me on a different one on Friday...no luck with it yet..I will give it some more time. I just really really want to know what it is like to sleep again. It has been way too long..several weeks.


The one sleep aid that worked like magic for me was Lunesta. I requested an Rx after my dad died and I just could NOT sleep. It put me to sleep fast but wore off early enough that I didn't have any "hangover" feeling. I went off it because it was expensive, so I switched to generic Ambien instead. That worked pretty well at putting me to sleep fast, but I'd still sometimes wake up in the middle of the night. There's now an Ambien CR (continuous release) that is supposed to counteract that problem, but it's more expensive and was not available in generic at the time. I found Ambien to be slightly habit-forming, though, and there was definitely a rebound effect when I stopped taking it: my insomnia would be very bad for a couple of weeks. So it really shouldn't be used long-term but can get you through a rough patch.

Benedryl doesn't put me to sleep quickly but it seems to help me fall back asleep instead of lying awake worrying when I wake up in the middle of the night, and it helps me sleep a little later in the morning.

Good luck -- insomnia is not fun. :(

[indysteel]

Sigh. Latest bloodwork still shows that I'm hyper. I was hoping that when I went off Synthroid, that my TSH would go back up. My new doc is steering me toward RAI/ablation. I don't know how I feel about that. On one hand, I haven't yet has good luck with Methimazole in that it put me into a hypo state no matter the dose. On the other hand, ablation seems so permanent. I know that thyroid eye disease (which I have not yet been diagnoses with) can get worse after ablation. I haven't actually talked to the doc yet, so nothing is set in stone. I still feel so lost as far as really trusting my docs. I have only met the new one once, and don't know that I feel confident enough in her to destroy an organ based on the strength of her advice.

[Catrin]

Sorry to read this Indy, I know it's been a long road for you. For me it was a great relief after my surgical thyroid removal, but my situation was far more advanced. I had the bulging eyes, among other things, and that went away after the surgery. I've been told one still actually does protrude a tiny amount but no one can tell without special tools.

I know you won't let her rush you into something you aren't comfortable with and you will tell her your concerns. Hang in there and I hope you are able to get this under control soon regardless of the method.

[redrhodie]

Indy, that's so frustrating. I'd be hesitant to proceed on that course as well. I'd lean towards waiting and seeing, especially since you've been feeling better since stopping Synthroid. Maybe see what the next blood tests say, buying time to get to know the doctor better.

[Kerry1976]

I am coming to this thread very late, but I also have Hashi's. I had to fight my PCP just to be tested. It was my psychiatrist who actually put all the pieces together (long term hypo, colitis attack, etc.). One thing that may help is going gluten free. Apologies if this has already been brought up in this thread. Thyroid issues are simply miserable, as is Hashi's. it is hard to deal with a moving target.

[Brandi]

Just this past week I was putting lotion on my face and neck when I noticed a large mass on one side of my neck just above my collar bone. The rush of fear that passed over me almost took me down to my knee's. And I was out of town to make things even worse. My husband looked at it and felt it as well and said " Well we need to get this looked at right away" and looked me in the eye's and said " DON'T Worry". Ha that was not easy!! We got back from our business trip on thursday and I was in the Dr's office the very next morning first thing. She took one look and felt my neck and said "yup that is your thyroid". So now I am doing the waiting game. Did a blood test on friday so hopefully I will find out results tomorrow then have a ultrasound on thursday.
I have had several issues the past few years that make me think it was all leading up to this though my blood test were always normal. I have read that your levels can be normal but you can still have slight thyroid issue's.
It does run in my family, mother, grandfather and great grandmother all had issues. Hoping if this is it it will explain things like, my moods,high bp, lots of hair falling out (I have a ton of hair so that is not an issue really) dry skin, sleeping problems and the worst the adrenlian rushes and anxiety I have had for a few years now. It really would make more since. I was scared at first when the Dr said worse case cancer but from what I have read it is highly treatable. But I am not going to give it that energy and keep on the posative side. It is amazing how common thyroid issues are. Glad this thread is here.

[indysteel]

Oh, Brandi. I'm so sorry. I'm glad you're getting an ultrasound, along with the bloodwork. I hope they reveal what's going on and that you can start treatment soon. Keep us updated, okay?

[Brandi]

I am glad I am doing something about it. I can be a chicken when it comes to Dr's but I am taking this seriously. I am getting myself informed but not too much because I know you can freak yourself out if you read to much before you even know anything. Keeping myself busy every day is the key. Though my energy is not to great and we are having super rainy weather for days now.
Staying in good spirits but I am getting a massage tomorrow morning because the tension in my back and muscles needs to be released big time.
I am with good friends this weekend and hubby has been a sweet heart about helping me put up christmas decorations. Yup keeping busy. Will ride my trainer tomorrow get a good hour in that should help too.

[redrhodie]

Welcome to the fun house, Brandi. My saga is also continuing. I got a call from a nurse today saying they were referring me to an endo (finally) because my cbc was off (I wish I listened better, she may have said low) and my iodine was high, which is weird because I asked for it to be tested because I suspected it was low.

I have been encouraged that my hair has stopping shedding, but it still looks bad, dry and weird. I don't look healthy if my hair is the barometer. I hope the endo figures me out. Although I generally feel a lot better, I suspect there's still something wrong.

[Blueberry]

I'm off to an endo too. My doc was willing to up my dose, but she doesn't really feel comfortable with targeting a range to make me feel better (though if I do feel better and my bloodwork is good in 4 weeks, I have the option to not go and she'll keep me as is). At my request, she did test all of my antibodies, and I was negative for everything, so no Hashi's. I've been on 50 micrograms for a little over a week. I do feel better - but I did when I first started the meds too so not getting too optimistic. I'm also on 1000 mg Vit D daily at her instruction - probably a very good idea.

Of course, the scrip got screwed up and I had to talk to her nurse to get it re-called in - who argued with me about my dosage and said my values were "perfectly normal." I was more than a little irked.

[Brandi]

They said my blood test were normal. Kinda bummed in a way because I thought it might explain a lot. Have my ultrasound on thursday so we will have to see what that comes up with. It all sounds so fly by the seat of your pants with this stuff.
Blueberry it sounds like a rough road I hope it gets better for you soon.
I just want answers as to why my thyroid is swollen.
Sending lots of light and love to all of you!

[Blueberry]

Find out what your numbers were. I have learned that not all docs agree on the ranges, and you can still be "within range" and have symptoms. I would definitely make an appointment with an endo. That really stinks. Hugs....

[indysteel]

Find out what your numbers were. I have learned that not all docs agree on the ranges, and you can still be "within range" and have symptoms. I would definitely make an appointment with an endo. That really stinks. Hugs....

+1. The ultrasound will hopefully be informative.

@Blueberry, your doctor sounds utterly frustrating. I'm so glad you're talking to an endo. although from my experience, some are better than others. I'm hopeful that it will be a step in the right direction.

I just made an appointment today with a third (yes, third) endo. I decided that I wasn't going to waste any time with the second one; I doubt that we'll be able to see eye to eye if she just wants me to do RAI. I think I finally found an endo in Indy that actually specialized in thryoid issues. He treats a friend of mine who has been resistent to traditional treatments, including anti-thyroid meds. Now, I don't necessarily have the same resistance, but I am encouraged that he's been willing to work with her and her parameters. That suggests to me that he listens and is receptive to more than one approach. I'm in the process of culling all of my lab results and diagnostics over the last year and a half. My appointment is on January 18th. Fingers are crossed.

[Catrin]

Brandi, I hope that you are able to figure this out soon! It can be so frustrating to know that something is wrong....

Indy, good luck with the new endo! The new one sounds quite hopeful, in the end they have to be willing to actually listen and that can be challenging to find in a specialist. I've never quite understood that...

[indysteel]

Brandi, I hope that you are able to figure this out soon! It can be so frustrating to know that something is wrong....

Indy, good luck with the new endo! The new one sounds quite hopeful, in the end they have to be willing to actually listen and that can be challenging to find in a specialist. I've never quite understood that...

Thanks! I want to clarify that I have nothing against RAI. I've talked to a number of people, like yourself, who were really sick with GD and for whom RAI offered the best chance of better health. I get that. I'm just not convinced that it's the way to go with me.

I've finally managed to review most of my labs for the last 18 months and am convinced that I have a subclinical form of GD. With SGD, TSH is suppressed, but other levels (like Free T4) are within a normal range. SGD typcially requires less aggressive treatment. Some docs don't treat it at all, and just let it resolve itself. I don't think that's an option for me, but in the very least I think RAI is too drastic a step. My first doc used the "subclinical" term once early on with me, but I didn't understand what she meant at the time and we never revisited it in terms of deciding on treatment. The one and only time I suggested something that would have been consistent with the dx, she shot me down. If the new doctor concurs that that's what I have, I think it'll open the door to a more fruitful discussion about how best to treat me.

[Brandi]

Thank you all! I am scared today and feel like crying constantly. I feel this thing when I swallow if my head is at a certain angel so I am constantly reminded it is there. Knowing my ultrasound is tomorrow for some reason I am way anxious now. I want to crawl under the covers and just sleep till I have to go. Instead I will drag my you know what to my bike. Hopefully she will clear my head. My husband is acting odd too. He seems just odd. Maybe it is me? or maybe this is as scary for him and he is trying to keep a low profile with me as to not get me worked up. I don't know......I am doing my best but I feel like I might explode right now!
Maybe I should not have had coffee this morning :)

[indysteel]

((((Brandi)))). Hang in there; hopefully you'll have some answers soon. Answers are good, even if the process of getting them is scary.

[Blueberry]

@Blueberry, your doctor sounds utterly frustrating. I'm so glad you're talking to an endo. although from my experience, some are better than others. I'm hopeful that it will be a step in the right direction.

I just made an appointment today with a third (yes, third) endo. I decided that I wasn't going to waste any time with the second one; I doubt that we'll be able to see eye to eye if she just wants me to do RAI. I think I finally found an endo in Indy that actually specialized in thryoid issues. He treats a friend of mine who has been resistent to traditional treatments, including anti-thyroid meds. Now, I don't necessarily have the same resistance, but I am encouraged that he's been willing to work with her and her parameters. That suggests to me that he listens and is receptive to more than one approach. I'm in the process of culling all of my lab results and diagnostics over the last year and a half. My appointment is on January 18th. Fingers are crossed.

I would agree - except that what doesn't come across is that she's concerned, compassionate, and very willing to listen to me (including letting me choose what tests I wanted). So....I'll keep her because she's good at most stuff. I hope the end experience is good. I have an appointment at [Insert local major medical center]. I asked for an appointment with someone with a thyroid bent, and the scheduler said she had just the person for me. I hope it's a good fit - my appointment is in Jan too.

I really hope you finally get some answers from the new endo. RAI is scary stuff, and not necessarily without complications (at least in felines) - though I know lifesaving when necessary. But it seems like overkill for your situation....

[Blueberry]

((((((Brandi)))))))) I totally get the feeling. I was the same way with my mammo/untrasound for sharp breast pain (nothing found). WRT men - they have odd reactions to possible health issues sometimes. Mine was frantically calling me as soon as I got out of the doc's office. I hadn't thought he was worried at all. Deep breaths.

[indysteel]

I'm glad to hear that your doc is good in other respects, Blueberry. I feel the same way about my GP. She has some weak points, but I like her personally and her staff is awesome to work with. She's not the one treating me for the GD, but she's been great in terms of referring me to these endos, one after another, without challenging me as to why.

[redrhodie]

(((Brandi))) I know this is hard, but try to focus on just the step in front of you. Good luck tomorrow! I hope you get answers and easy solutions.

I got an appt with the endo. Not until Feb, but I'm okay with that. She's well reviewed on Mary Shoman's list of best thyroid doctors, so that's encouraging.

Indy, I think you're making the right decision.

[Brandi]

Deep breaths and yoga then off for my ultra sound hubby is going with even though we are not supposed to get an answer till tomorrow or monday. Hoping tomorrow I don't want another long weekend last last weekend.

[Brandi]

so the tech pretty much said they will biopsy my thyroid. I saw the picture's and have to agree I would!. My one side is normal so I guess that is good but the other is 3 times the size. The tech said in her opinion it has been there a while. She could not see that happening over night unless there was some trauma that has caused a blood clot and it has burst. Don't want to speculate. But she said to not lose sleep over it. She has seen way worse and besides it is one of the easiest things to take care of.
Hubby took me out to lunch after to one of our fav places and he made me feel better. Promised he would step up to the plate and take care of things if I have to have an operation and if not he would still step up. I am not so scared now though I still don't have answers. Not sure why maybe because of the tech saying what she said. I know she is not a Dr but she does see this stuff all the time.

[indysteel]

Brandi,

I'm glad you got through the ultrasound and that the tech was reassuring. Just take each step as it comes. I'm hopeful you'll be right as rain sooner rather than later. Nearly everything that can go wrong with your thyroid is very treatable.

[e3rdpower]

Nearly everything that can go wrong with your thyroid is very treatable.

This is an excellent point and very true. It can certainly be a pain in the arse from time to time, but it is treatable. Best wishes Brandi!

[Brandi]

It is amazing how many people have met just in the past week that have or had some thyroid issue in their life. I am glad there is so much support out there.
My biggest question that will never be answered is why this was not caught before it got to this stage. But then who knows? I have always thought I was very in tune with my body and even I didn't notice it!
I really want to thank you women for being there. For many years you have all been so supportive. And the collective knowledge is priceless!
Ok 1 question has anyone heard or know if eating curcifurous veggies can cause goiter growth. I just heard this but have a hard time believing such SUPER veggies can be bad for you if you have thyroid issues. I love all veggies and would hate to think I should stop eating them!

[Brandi]

Tomorrow I see the ent to talk about a biopsy. I would really like some answers. Is 3 weeks or more normal to find out what is wrong?

[indysteel]

Three weeks doesn't surprise me. It took about 7 weeks to get my Graves Disease dx, between the various tests I had and doctors I saw. Keep us posted and hang in there.

[redrhodie]

Three weeks from the time of biopsy is what I experienced with my breast. Those are long weeks. Try not to worry. You will be okay.

[Brandi]

Trying to keep my spirits up. My brain can get the better of me. I have moments of panic then come back to earth. Jan 7th i am having a biopsy. Then we go from there.

[Catrin]

{{{{Brandi}}}} Hang in there!

[Brandi]

Thank you. I am my own worst enemy for sure. And in light of what has happened on Friday I am very emotional. Hard not to be. I know anyone of those people would trade me right now. I need to keep things in perspective. On top of everything I got a touch of food poisoning on sat that did not hit me till after we went to a christmas party and never got sleep sat night. Wicked it was. I feel better now and slept like a log last night. So much so I snored my husband out of bed. I think this swollen thyroid has made me snore more then I normally do.
My best friend has the next week and half off so I am hoping we get some girlfriend time. That always helps.

[snapdragen]

Hi Brandi, here's a couple of links about thyroid and cruciferous veggies..

http://www.drweil.com/drw/u/id/QAA355093

http://www.livestrong.com/article/491733-cruciferous-vegetables-thyroid-control/

[Brandi]

Thank you snap!

[ehirsch83]

I've been reading but been silent due to handling a new job and a new city.

::hugs::

I have a question for those on synthroid or the like.

I had my dosage dropped about 5(ish) weeks ago and am not about 7 weeks late on my period. Has anyone else dealt with this? (and no ,not pregnant). I had thyroid cancer back in 2003 and had a total thyroidectamy with partial parathyroid gland destruction.

[Brandi]

What is parathyroid?

[indysteel]

Brandi, most people have four parathyroid glands that are on the surface of the thyroid gland. The parathyroid glands control the calcium in your bloodstream.

[Brandi]

Had my biopsy today. Ok didn't enjoy that. First 3 needles I thought "Wow no big, don't know why some people were warning me about this". OMG the 4th almost made me jump out of my seat. I wanted to cry for a minute there. Came home and took a 2 hour nap after that. Woke up to my sweet kitty curled up in my arm pit. Felt better instantly. Hoping for results this week. Will post what happens.

[indysteel]

(((Brandi))). Hang in there; I hope you learn something soon.

[Brandi]

Ok I learned that a biopsy is not my favorite thing! But worth it. They found no cancer And at this point want me to come back in 9 months to recheck my thyroid with another ultrasound. Or if I notice a change prior to that. I guess I am ok with this. Can you have this and it never turns into anything? Can it go away? So many questions. Thank you all for your support by the way.

[indysteel]

Brandi, I'm extremely relieved that it is not cancer.

But, I do have to otherwise wonder about the decision to wait 9 months for a recheck. Thyroids don't just get enlarged for no reason, and the fact that they haven't determined a reason is somewhat bothersome, at least to me, especially since you have some symptoms seemingly consistent with abnormal thyroid function. In the very least, I'd suggest talking to your doc (I forget; are you seeing an endo?) about having bloodwork redone in a few months. Does your thyroid still feel enlarged at all to you? Is it impairing your breathing or swallowing?

[Brandi]

The nodule is what has made my thyroid enlarged according to the ENT I am seeing. The endo is like a 3 month wait to get in and the ENT came highly recommended from a few different people and my husband. I will ask about the blood work though. Thank for your opinion.

[indysteel]

The nodule is what has made my thyroid enlarged according to the ENT I am seeing. The endo is like a 3 month wait to get in and the ENT came highly recommended from a few different people and my husband. I will ask about the blood work though. Thank for your opinion.

Some nodules can produce extra thyroid hormone, distinct from the thyroid hormone that your pituitary gland produces. Hashimoto's can cause nodules, too (I think). I'm not sure if your blood work conclusively ruled out either of those options, but again, I'm concerned because if memory serves, you weren't feeling all that great even before you realized that your thyroid was enlarged. If I were in your shoes, I might at least make an appointment with the endo. If in three months time, you feel good, then skip it, but if you still feel off (trouble sleeping, hot or cold, anxiety, heart palpitations or a racing heart, hair loss, fatigue, depression, dry or oily skin), then go through with the appointment and see what an endo says.

In any event, I'm really glad it's not cancer. I hope you already feel tons better. Just keep us posted if anything else develops or changes.

[Crankin]

I went to an ENT in 2007, for other reasons and he discovered I had nodules on my thyroid. He sent me to an endo, who did ultrasounds 6 months apart for 2 years. After nothing had changed, she said she'll just keep feeling them and eventually, maybe do a biopsy. She also said that 50% of the people over age 50 have thyroid nodules!This same doctor treats me for my osteoporosis, and I think next time I go for my Prolia shot, I will discuss doing a more in depth thyroid blood work panel. I also have had many of the symptoms of thyroid disease, and no one has suggested this. I had a basic panel done years ago, and of course, my PCP said nothing was amiss. I still wonder if my "fibromyalgia" symptoms are really thyroid disease:physical manifestations of anxiety, heart palps, sweats, weird muscle aches. I never had any of the tiredness and "brain fog" of fibromyalgia and I think this was just a convenient way to rid of me.

[Brandi]

I can't tell you how many times I have asked if there was a connection between my symptoms and my thyroid. They say my levels are perfect though. That I could not ask for better levels. And that my symptoms are due to aging or genetics etc.... I swear I have shoved these questions down their throats. Not sure I want to see the Endo that is here. I hear terrible things about him. One he is wishy washy and too layed back. We only have one here that takes my insurance soooo unless I can find someone else not sure.

[indysteel]

Brandi, you might ask your ENT to run some bloodwork to screen for the antibodies that are associated with thyroid related autoimmune disease. It is possible for labs to be in a normal range in the presence of such antibodies.

[Brandi]

I will do that!
Meow!

[indysteel]

Well, I met with my third, and hopefully, last endo today. He's just what I was hoping to find. He listened, didn't talk down to me, and offered understandable answers to my questions. He seems to more closely monitor his patients levels if they aren't yet stable. Plus, he uses an online portal for posting my labs and communication. I just felt a lot more confident talking to him than I did the other two docs. He's not going to push me toward RAI, which is a huge relief.

On a related note, my skin has been really itchy lately and my palms red so he's running some liver tests. sure hope nothing is wrong on that count.

[Catrin]

Glad you found someone you like Indy, sounds like he is the one you need. Good luck on the liver tests!

[redrhodie]

Yay Brandi! Glad it's not cancer!

So happy for you, too Indy! Hopefully this one will figure you out!

I'm still feeling good. My endo appt is in 2 weeks. I don't feel bad or anything, but I'm tired of waiting.

[e3rdpower]

Well, I met with my third, and hopefully, last endo today. He's just what I was hoping to find. He listened, didn't talk down to me, and offered understandable answers to my questions. He seems to more closely monitor his patients levels if they aren't yet stable. Plus, he uses an online portal for posting my labs and communication. I just felt a lot more confident talking to him than I did the other two docs. He's not going to push me toward RAI, which is a huge relief.

On a related note, my skin has been really itchy lately and my palms red so he's running some liver tests. sure hope nothing is wrong on that count.

That sounds lovely. I do like my endo, but have yet to find one with online communication like that. It sounds awesome.

[Red Rock]

Well, it's been a while since you have seen me on this thread. I hope all of you are getting the attention of those that need your attention. Go Patients!

I'm feeling like I'm at my wits end almost. It's been good that I have not had to come here to complain or get advice etc. However, at my last endo appt. , now about 2 months away previous. He told me to cut my dose in half, so from 10mg to 5 mg once a day. I have since lost a job, become more brain foggy, not remembering, short attention span, some bone aches and lost over or at least 5 pounds. I'm sure there is more. My next appointment isn't until the 20th which will not be here soon enough. I can't wait to tell him to put me back at 10 mg so I can be myself again.

Those that have had to deal with doctors experimenting with your chemistry. Now I understand fully. It's no fun for sure. I have told my hubby that the night before my next appointment to give myself a full 10 mg. he says to wait until I go see him. Aargh! Not sure how I will make it.

Anyway, that is what is happening in my life these days. Hope to be a better person again after my appointment. Thanks for listening.

Red Rock

[Grits]

I don't think I have weighed in on this thread yet, but do have thyroid issues myself. Please call and leave a message for your doctor that your symptoms have worsened dramatically (be specific) since the medication change, and that you, at the very least, need to go back on the old dosage until another treatment is devised and plan to do so unless you hear back with a different treatment option. At my practice I leave messages with the doctor's nurse. If you did better on 10mg, then start doubling your dose and get a refill request sent in if you don't have enough to last until the 20th. No need to wait until the 20th to take action if you are suffering.

[shootingstar]

Red Rock, I hope you get better!

[indysteel]

((((Red Rock)))). I'm with Grits. Call your doc and see if you can, in the very least, get blood drawn sooner rather than later to see where your levels are so that you can make an appropriate dosing change. I'm sorry about your job, too. Hang in there and keep us posted.

I'm telling you; better health through chemistry is tough. I've played around with my own Methimazole dosing (reducing not increasing) because, quite frankly, if I waited for my bloodwork and a doctor's order, I'd feel lousy most of the time.

[Red Rock]

Thanks for your input Grits and Indy. I put in a call to the endo early this am after reading your responses. Still have not heard anything from them yet.

[redrhodie]

My endo appt. went well. She thought everything seemed right on, but ordered an ultrasound just in case there's something hiding. So, I'm getting that done tomorrow. She also ordered more blood tests. My GP never tested for antibodies, so it will be good to know if this is Hashi's. The other problem with my blood doesn't seem to be thyroid related, but she thought it may just be my body recovering from the radiation treatment.

I may never need to go back to her, but she was great. She answered all my questions and put my mind at ease. She also pointed out that I was already hypo at my blood test in 2011, but being under 6, it was "normal " by the old tsh standards. I need to talk to my gp about that.

Hope you're all feeling better!

[indysteel]

I hope the ultrasound and antibodies don't reveal anything further. But yikes! A TSH of 6 as the upper end of the standard is higher than I've otherwise seen--even for the old standard.

[redrhodie]

Oh, I think I wasn't clear. My tsh was over 4 in 2011, so I think that's under the old guidelines, but over the new ones. It was my bad for not looking into for myself, but at that point I didn't know the way I felt was abnormal. It really took my hair falling out to make me see something was wrong. And that is also growing back. Yay.

[redrhodie]

Oh, and I think the guidelines changed before then. Actually, I think they still have the old guidlines on the lab printout, which I need to tell my NP about.

[indysteel]

Oh, and I think the guidelines changed before then. Actually, I think they still have the old guidlines on the lab printout, which I need to tell my NP about.

Yeah; a lot of doctors and labs don't use the new guidelines. It's frustrating. Even with the new reference range, some docs will tell you that while a TSH of either .3 or 3 is considered "normal," most of their patients feel at their best with a TSH closer to 1. Depending on a doctor's attitude, it may be up to the patient to insist that dosing decisions are based, not just on what's "normal," but on how the patient feels.

[Blueberry]

Yup. My endo is refusing to up my dosage (I will be looking for a new endo). My TSH is over 2, and went up to closer to 3 between bloodwork. She says "you can't titrate it that closely." ARGH!

[indysteel]

Yup. My endo is refusing to up my dosage (I will be looking for a new endo). My TSH is over 2, and went up to closer to 3 between bloodwork. She says "you can't titrate it that closely." ARGH!

Good luck finding a new doc? Has the current doc asked you how you're feeling at that level? If the answer is "not great," I don't understand her opposition.

I don't know that they appreciate the frustration of being dependent on a drug for nearly every bodily function. From sleep to pooping to libido, among many other things. As a patient, you just want to go back to taking "normal" for granted.

[Red Rock]

Blueberry...man that's got to be beyond frustrating. The doc taking into account how you are doing.
Indy..I totally agree with you there.

My update: At least it is postive. I told the doc what all had happened and how I was feeling. It did not make sense to him but the Assistant said to him in the office that even though my dose had been lowered, I was still not feeling great. Then she said that we want you feeling better. I agreed. Isn't that what we all want??? Anyway, I'm back up to my old 10mg dose. Both my husband and I hope this takes away all of my symptoms and I start feeling better soon. Not sure how long soon will be. They did say that if I was not feeling better in a months time, to go and get the bloodwork done. Then I guess I would see him at that point. He has added a CMP, a CBC, the TSH Antibody, in addtion to the normal thyroid panel. I am close on my weight. I feel like I have been eating house and home for a while just to get closer to my normal 140. I came in at 136. So I am still eating a little bit more than normal.

Good luck to everyone. This is by no means any fun. Why can't it be simple? There needs to be more understanding with the whole Doc patient relationship and the thyroid for sure.

Take care all,
Red Rock

[redrhodie]

So, I got my labs, and it looks like I have Hashimoto's (high levels of both antibodies). No big surprise, and actually a bit of relief to know it wasn't caused by the radiation treatments. My endo is on vacation, so I haven't heard from her. Also, my tsh was .19, so technically hyper, but I don't feel hyper, so I'm not sure if she'll lower my dose. I don't want to be overmedicated, but I feel good right now.

I'm nervous about the increased risk of other autoimmune diseases due to Hashi's, especially Celiac Disease. (Ha ha, auto correct changed Celiac to celibacy. I hope I don't get that either). My half brother has it so, I know I'm at risk genetically. I'm not going to worry about it until it's a problem, but it will be in the back of my mind.

[indysteel]

That's a bummer, Red. I hear you about the worry re: other autoimmune diseases. It's on my mind a lot.

I'll be curious as to what your doc says. Two of the three endos I've talked to have indicated that I may have both Hashi's and Graves. For the time being, my current doc is still just focusing on my TSH levels and how I'm feeling. But they're right about the dx AND I start to have wild swings, then the easiest thing might be to treat with RAI, although that, too, can induce changes in the antibodies. I'm having a hard time getting my head around the transient nature of the various antibodies that can cause autoimmune related thyroid disease.

[Red Rock]

Red- Sorry to hear the bad news on Hashimoto's. in the beginning, that was what thet thought I had until my symptoms changed and so did my bloodworm. I'm still not out of the woods yet. They are checking me for other things, such as Hashimoto's, too. I'm just hoping that with my dosage increase all of my adverse symptoms go away.

Good luck. I understand where your coming from on the other autoimmune diseases. That is how I feel about all of it too.

Red Rock

[redrhodie]

My endo called last week and confirmed Hashis and lowered my levo dose from 100 to 88 mcg. Will check labs in 6 weeks.

If snap reads this, how did your dose change go? I think it was lowered a while back. Did you adjust well? Was there a phase of feeling hypo?

[indysteel]

How are you feeling these days, Red? You mentioned that your bloodwork showed a low TSH. Are you feeling hyper at all or have you sensed a worsening of any of your hypo symptoms.

I feel for you. I've done some reading on Hashi's thyroiditis and Hashi's toxicosis, but I have to be honest that I found much of it confusing. I hope your case has a rather straightforward presentment and that it's easy to manage.

[redrhodie]

I feel good, but I do feel slightly more anxious than usual in the morning, and I have been retaining water. Oh, and maybe brain fog. I just drove 30 miles to Providence and realized when I got to Whole Foods that I forgot my wallet. So yeah, things like that have been happening more than normal. I left my phone at work last week, and the only other time I did that was right before I was diagnosed.

You know what's really weird? I worked for 12 years at a very small company in NY, and I know 4 of us have Hashi's. It makes me wonder if this is environmental or viral. Of course it could be shear coincidence, but it seems like a cluster to me.

Oh, and I'm not even going to look up Hashi's toxicosis! I don't need another hobby!

[Catrin]

Red, I hope they are able to help you quickly and the Hashi's will calm down with no surprises! Thyroid problems are not fun...

[redrhodie]

Thanks, Catrin. Compared to how I used to feel, this is still pretty great. At least I'm not fatigued! That and the hair loss were the worst.

[OakLeaf]

I haven't followed this thread since thank goodness I don't have any thyroid issues, but thought you might be interested in this:

http://online.wsj.com/article/SB10001424127887323550604578412913149043072.html?mod=wsj_share_tweet

Hope you're all doing well.

[thekarens]

I haven't followed this thread since thank goodness I don't have any thyroid issues, but thought you might be interested in this:

http://online.wsj.com/article/SB10001424127887323550604578412913149043072.html?mod=wsj_share_tweet

Hope you're all doing well.

Interesting article and I live in Houston so it made it doubly interesting!

[redrhodie]

I haven't followed this thread since thank goodness I don't have any thyroid issues, but thought you might be interested in this:

http://online.wsj.com/article/SB10001424127887323550604578412913149043072.html?mod=wsj_share_tweet

Hope you're all doing well.


That is interesting. So far from my experience there hasn't been a performance enhancement from levothyroxine. I wish! I am still a slug.

[Grits]

"A spokesman for the IOC said that the organization's belief, based on existing evidence, is that thyroid hormone used to excess "might have an anorexic or stimulant effect," but that it's more likely to inhibit than enhance performance."

Yes, 100%. I can tell you from experience that medicating with thyroid hormone to excess does NOT enhance performance. I was on 50 mcg of levothyroxin and TSH levels were good and then went off BCP. I knew that I should get my levels retested since BCP can interfere with the absorption of the medication, but procrastinated. I started experiencing muscle fatigue and soreness. My legs would just give out on rides so I could not exert any effort and would just have to spin in. I also had rapid and irregular heart beat at times. When I finally did get tested, I was well into the hyperactive range as I had been being overmedicated since going off the BCP. Now 4 weeks since starting the lower dose, I can tell a huge difference in my stamina and lack of muscle soreness and fatigue. Maybe they mean enhance performance by playing around with levels within the "normal" range, which is broad, but if you get outside of it to either extreme, which I now have done, it definitely is not beneficial in any way.

[indysteel]

That's my experience, too, Grits. If I'm even just a little bit off in either direction, I don't perform at my best.

[OakLeaf]

I thought it was interesting not so much for the insinuations of doping, but for the hypothesis that endurance sports can induce hypothyroidism.

[redrhodie]

I thought it was interesting not so much for the insinuations of doping, but for the hypothesis that endurance sports can induce hypothyroidism.

Yeah, I wouldn't be surprised if cycling had a part in this for me. As much as I consider myself a slacker, I was pretty married to my 100 mile per week year round goal. I was suffering some symptoms that should have kept me off the bike to recover. I just ignored them; rode through them.