Was hyper then medically hypo. Now low normal but feeling awful. Should I pursue thyroxine?

Hi, I'm new here, glad to have found this place. My sympathies to everyone else suffering with a thyroid problem. I'm hoping someone might be able to help me figure out what is going on with me.

I was diagnosed with possible Graves' Disease in March. Free T4 was 41 (range 10-24) and TSH was 0.02. My TPO was over 800. I felt very ill, all the classic hyper symptoms. But no goitre, swelling or neck pain at all.

I was given Carbimazole which made me hypothyroid very quickly. Within only three weeks TSH was 50 and T4 down to 5! But I felt so much better, back to normal.

I was taken off Carbimazole. Felt great for a couple of months but in the last month some bad symptoms are coming back: horrible muscle weakness, muscle tics, breathlessness on exertion, a feeling of doom and anxiety every morning, and almost a poisoned feeling some days. But my bloods are stable low normal range for the last three months! TSH has come right down again and averaging 3 (a bit high but in the normal range) and my T4 is about 13. My T3 is 4.8 (range 4-8.3).

The endocrinologist is now hazarding a new guess that I have 'thyroiditis' not Graves. I don't know which kind. I asked why I had new symptoms when bloods remain low normal but didn't really get an answer to that . Do they sound hypo to anyone reading this?

Then I asked if I could have thyroxine to take me higher into the normal range because I am now feeling so weak and horrid. I was told no, because if this is a self-resolving thyroiditis, I might end up on thyroxine for life when I don't need to be, because the thyroid will stop working or something. Is this true?? Should people with a transient thyroiditis not have thyroxine for temporary help?

I'm not convinced it is transient anyway, great though that would be.

Could my symptoms be related to a different hormone going out of whack? I am going to be tested for cortisol if I don't improve in a fortnight. I always feel worst in the morning and somewhat better (though still weak and wobbly) as the day goes on. Does anybody else have similar?

I have an open appointment to return to the endocrinology dept so I'm not abandoned or anything, but I am basically being told to wait it out in case things resolve on their own (no timescale given!) But I don't want to wait it out feeling awful if thyroxine would help now. In summary: am I belatedly feeling 'hypo', can transient thyroiditis be treated with thyroxine, and should I pursue thyroxine?

Sorry for the essay.

4 Replies

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  • Welcome to the forum, Rocca.

    Although you have Graves, you also have Hashimoto's because TPO is very high. Hashimoto's can cause transient hyperthyroidism in the early days. As lymphocytes infiltrate the thyroid gland cells are destroyed and dump hormone into the blood stream as they die off and this made you hyperthyroid. After several infiltrations (which may not cause such high thyroid levels again) the repeated cell destruction atrophies the thyroid gland which eventually is unable to produce sufficient thyroid hormone causing hypothyroidism.

    There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it eventually causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies and may delay progression to hypothyroidism.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

    It's not true that taking Levothyroxine will stop your thyroid working but if your thyroid levels are swinging between hyper and hypo being on Levothyroxine may overmedicate you which can cause osteoporosis and atrial fibrillation.

    TSH 3 indicates your thyroid is struggling but FT4 13 and FT4 4.8 are in range. NHS won't diagnose hypothyroidism until TSH is over range or FT4 below range.

  • Thank you very much Clutter. That is really informative. Looks like I really need to go back to my GP/endocrinology and ask them why they haven't talked to me about Hashimoto's and say I'm not happy sitting around for an unspecified amount of time feeling rubbish, waiting for my thyroid to prove to them it's not temporary. I'm a bit gutted now if it's not 'just' Graves' as there's thus no chance of remission, but it's best to know what I am dealing with. Thanks for the links, I will go and read those (already mostly gluten free since April as I had read something about that and wanted to try and help myself, but I suspect I will need to ensure 100% now).

  • Rocca,

    They see autoimmune thyroiditis as a potential cause of hypothyroidism ie "you may become hypothyroid in time". They just don't see autoimmune thyroiditis as a big deal because it isn't curable and its the resulting hypothyroidism which is treated.

    thyroiduk.org.uk/tuk/about_...

    I felt rubbish with elevated TPOab, not as high as yours, but because my thyroid levels were euthyroid (normal) I was told my symptoms were non-thyroidal. They resolved after thyroidectomy though so I'm convinced they were wrong and subsequent research supports my view. Nevertheless, while I was swinging between feeling hyper and hypo it's hard to see how either Carbimazole or Levothyroxine could have been helpful and they probably would have made things worse.

    medscape.com/viewarticle/76...

    thyroiduk.org.uk/tuk/resear...

  • Sorry Clutter I don't know how I missed your second reply to me. Hadn't got the hang of the site yet I think. Thanks again. My latest blood results are interesting, poss reason for feeling awful is because my T3 and T4 are continuing on up but faster - T4 has gone up to 19 (12-22) and T3 5 point something (3.1-6.8), but yes I do wonder how much of feeling systemically ill and having my lymph glands come up is due to the antibodies themselves . My only 'low' so far is due to overmedication on Carbimazole. I am still in the highish normal range so both I and the endo agree no thyroid medication for me for now, but I can take regular Propranolol which does really help me at the moment. Blood test again in three weeks to see how things are going so I do feel listened to and taken seriously now my blood results seem to be reflecting the changes inside that I feel. Thank goodness!

    It is interesting that your symptoms resolved on thyroidectomy so yes they must have been the thyroid.

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