Thyroid - another question
I've had hypothyroid for a lot of years. Always done ok on synthroid alone until 2-3 years ago. Feeling tired, having trouble losing weight, brittle nails, etc. Sounded like classic thyroid symptoms to me. I went to an endocrinologist who did the standard thryoid tests (tsh & t4) and said my thyroid was under control. Recently I'd read some articles that said your tsh and t4 could test fine, but you could still have thyroid issues if you were low on t3 (cytomel works on the t3). I convinced the doctor to try a test for t3, but he would only do the total t3 test. That came back in the medium-high normal range. He said it's definitely not my thyroid - but I still feel tired, can't lose weight, etc., so I'd like to figure out something. I went to the nutritionist last year, and after writing down everything I ate and my exercise for about 3 weeks, she couldn't figure why I wasn't losing weight. So I don't think it's nutrition related. So here is my question. Has anyone ever had normal tsh, t4, and total t3 tests later to find out that it was thyroid and that sonmething other than synthroid was required for you to feel better?
Comments
Hi Bob,
I feel for you. I am new to this awful hypo world, and it is no fun. Others here have a lot more experience than I do, but I can share my T3 experience.
Like you, my TSH and Free T4 are normal. My Free T3 was below 1/4 of the minimum range. To be frank, in the months before the diagnosis, I have never felt like such sh#* in my life. You know the deal, and I won't bore you with those details. My GYN who is a very progressive doc, and hormone specialist, ordered the tests--and she was sure to tell me that it was important to check TSH, Free T4 and Free T3. . When the low Free T3 came back, she put me on Cytomel alone, and I have been on it now for 6 weeks. I feel SOOOOOO much better. Not 100%, but all the awful, horrible physical and emotional/mental symptoms are VERY mitigated. I honestly think I can get through IM training now--whereas 6 weeks ago I was quite sure I had to drop out.
Yesterday, I met with my primary care doc since I have to follow up with this in that practice. He told me that he has heard from many, many patients that Cytomel has worked wonders for them. He said, however, that there is really "no proof" it works, and that using it is "controversial." I told him "no proof" for me meant that the med changed my life. I asked him what he would have done seeing my results, and he said, "nothing." I said, "I would have been in here asking to be voluntarily committed, it was getting that bad. Instead, I'm on the mend." He said he was willing to monitor it, and make sure the Free T4 doesn't go too high, etc., etc. It was a weird convo, but in the end he agreed that many people do wonderfully, and he was fine with it. He left me scratching my head since he never did tell me what "controversial" meant. Here are some web sites that talk about the issue http://www.stopthethyroidmadness.com/; http://www.thyroid-info.com/articles/toftchange.htm
I cannot, however, lose weight. I gained 5 lbs out of nowhere with this. I tried 1400 cal/day and working out and I stay the same--or GO UP! I increased to 1800/day, per Penny's recommendation so I don't go into starvation mode, and I promptly gained another 1.5. I am water retentive, and just cannot get rid of it. It's all in the abs too. I decided I'm going for a resting metabolic test (MedGem), then going to contract with Penny to work out a plan. I figure knowing my real RMR will help me dial the caloric intake in more precisely. The test is $60. I have NO idea if it will help. It's going to be a slow process, that I can see. ! absolutely do not understand how one cannot lose weight watching every single mouthful and working out as we do. People don't get it. This does NOT come off. It's incredible, and extremely frustrating.
Sorry for the long riff. Upshot--
There's a long hypo thread on ST that has some good info. Glad there are others here to share this with--cuz you know what they say about misery.
LP
Linda - thanks. I'm going to see my PCP, and see what he says. Maybe I can get him to order more tests. I'll check out the RMR test - that sounds like a good idea. I think I'm OK with nutrition, I had a nutritionist work with me last year, but if my RMR is wrong, it would throw the whole thing off.
Last night: I napped from 5 - 6, then went to bed at 9 and got up at 7:30 a.m, then napped 10:30 a.m. - noon...... so not there yet on thyroid fix! 1.5 weeks after synthroid dosage change but I did ride my bike and run with low/moderate intensity this past week so getting there.
Hope you feel better soon - I know when my thyroid has gotten off, it ususally takes at least weeks before I feel a lot better.
Bob- I have been meaning to reply. I have been hypothyroid all my life. They only recently started checking total T3. I was started on cytomel in December. My endocrinologist mentioned that when T3 gets even in High normal area, that is when arrythmias can happen. So if you were were in medium-high range for total T3, and other numbers ok, may not be thyroid. Fatigue can be tricky, with many causes.