graves disease and still feel dreadful

Hi all. I was wondering if anyone could enlighten me. My sister was diagnosed with graves disease 18 months ago and had so many ups and downs until they finally got it under control. She is now within the levels and been taken off medication.

However she has become really ill although her levels are still ok. She has waves of horrendous pins and needles, followed by stomach cramps, extreme tiredness, muscle weakness, an extremely dry throat and whilst this is happening and for several minutes afterwards has problems with understanding and judgement. Does anybody know what this could be as we are all so worried?

5 Replies

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  • I would suggest the treatment has triggered pernicous aneamia or b12 deficiency

    PA is auto immune and linked to graves or hashimotos

  • Do you have a record of her latest blood test - the one showing her to be supposedly now ok? It is possible that she is now underactive. Many of these symptoms could be caused by her thyroid levels being too low, particularly T3. If you can post the latest blood tests, members can advise.

  • Hi, this sounds exactly like me. I'm apparently within levels for my thyroid due to graves but still feeling dreadful. I'm on vit B12 injections every 10 weeks, and vitamin d due to deficiency.I also have codine, diclofenac and nortriptyline for pain. Nothing does much to help but the b12 has certainly improved my symptoms.

  • Thanks for replying. She has just had her b12 tested but it is within range yet has all the symptoms of b12 deficiency. So she has started taking b12 anyway and feels slightly better although still having these dreadful episodes but not quite as often.

  • Don't listen when they say 'within range' the first time I was tested my results was 225 and the range was 190-900 I continued getting worse and they tested again it had dropped to 174. If they had treated me first then I believe my symptoms would have improved much quicker. My last test it was 700 but the Dr still thinks I'm having problems from being deficient for so long. Try to get her results and the ranges. There are some great people on here who can interpret them fantastically. Hope she feels better soon. It's a long process x

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