I've messed up and now I'm back to square one

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I was diagnosed hyper in March and it took me 6 months to start feeling better again on 25mg of carbimazole, gradually reduced. Then I went hypo and finally euthyroid and stable at the low end of normal on 5mg of carbimazole. But I kept getting hypo symptoms and so I reduced my dose to 2.5mg as I couldn't stand the hypo symptoms (even though I was just within normal range). I felt brilliant on 2.5mg and after 6 weeks my levels had approached the middle of the range (still on the low side) so I stayed on 2.5mg thinking it was the dose that suited me best. Then all of a sudden, after a series of emotionally stressful events and constant emotional pressure from stressed out spouse, my hyper symptoms returned with a vengence. Now I think I should have stayed on 5mg and it's all my fault. I am losing a pound of weight a day! I look horribly thin but can hardly eat a thing despite being ravenously hungry. I have had my tests brought forward and awaiting the results but have put myself back on 5mg. I didn't like my endo and so asked to be referred back to my GP. I thought that once they found the dose you were stable on, that was it. But it seems you can relapse due to emotional stress. I just feel totally on my own with this. I don't like having to go so long between tests because I think my dose might be wrong. I am so anxious. I have a very heavy physical job to do 7 days a week and am close to collapse. Negative for Graves and Hashimotos, no goitre. My hyperthyroidism is unexplained. Does anyone else have this?

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  • Posted

    How did you rule out Graves and Hashi's?  Did you have TRAb and TGAb testing?  I have had to adjust a lot downward and i don't mind that.  I am on 2.5 mg 3 times a week currently.  Eventhough my antibodies are not detectable and my levels are excellent, I am always afraid of huge changes causing relapse so I just cut gradually.  Also learning some stress reduction tools like Yoga and Mindfulness can also help.  I know for myself, I felt symptoms return one day and addressed the stress.  Are you getting Free T3 and T4 tested?  Perhaps you need a little T3 supplementation?  Don't know if any of this helps.  I'm just putting my thoughts out there.

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    • Posted

      Thanks, Linda. It's confusing because I have all my symptoms back including the nausea and weight loss, but yet I'm really feeling the cold (not helped by our heating being broken at present), but remember being really hot the last time. It may even be that I'm hypo, but then I don't think I would have lost nearly a stone in 3 weeks. I am having my TSH, free T3 and free T4 tested and should get the results today. If they're normal then I have no idea what it could be. I have almost constant headaches too. My hips and knees are seriously hurting me as are my ribs and back. I'm a total mess but cannot rest. I got a part time groom to help but her main job needs her in for extended hours all of a sudden and so I am left doing more with the horses again. I feel as though I am going to just collapse. I wake up with tachicardia too, but at other times my heartbeat is normal.

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    • Posted

      Sorry, I forgot to say, I first saw my endo once I was stable because I wanted more answers than my lovely GP could give me and was worried about going hypo. I felt my carb dose was too high. I didn't take to my endo because he was really supperior and despite seeing me privately, seemed to just want me in and out as quickly as possible (I was in there less time than a normal GP appointment!). I had to really push him to do the antibodies tests because he just kept telling me I had Graves disease and I naturally wanted confirmation of that. The antibody tests both came back negative so he said I didn't have Graves and that the tests did not suggest I was someone that would go hypo very easily either. I have no idea what he based that on because at that time my TSH was 4.8 (so slightly hypo).

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  • Posted

    Now I'm very confused. I got my bloods back today and they're normal.

    TSH 2.2 (was 3 ten weeks ago)

    T3 4.22 (was 4.15 ten weeks ago)

    T4 16.2 (was 14.3 ten weeks ago)

    So values going up but nowhere near hyperthyroid. So why am I getting all of the symptoms back?

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    • Posted

      There are two things I can think of.  You may have Hashimoto's in which case the tests you need done are TGAb and anti-TPO to verify that.  There was a lady who posted to this Board who has Hashimoto's and she had a lot of swing from hyper to hypo and back on the Methimazole but was able to control all of her symptoms well on Regular L-Carnitine.  The other thing is you may have an adrenal tumour called pheochromocytoma which affects the thyroid in ways that you describe because of the excess adrenal hormones it produces.  Ask your lovely GP about both of these and see if you can get the proper testing done for them if they think it is a possibility.

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