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. 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.