Another Thyroid Thread.... (Redux)

[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!