graves disease and still feel dreadful - Thyroid UK

Thyroid UK

137,156 members160,846 posts

graves disease and still feel dreadful

sweetness147 profile image
4 Replies

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?

Written by
sweetness147 profile image
sweetness147
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Hennerton profile image
Hennerton

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.

samspam profile image
samspam

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.

sweetness147 profile image
sweetness147 in reply to samspam

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.

samspam profile image
samspam in reply to sweetness147

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

You may also like...

Blood test results..perfect but still feel dreadful.

an hour..downhill all the way!!Endo confused but has done loads of tests.brain scan and heart...

Graves disease and feeling low

Hi I was diagnosed with graves disease 6 months ago, was feeling amazing before diagnosis had a few...

Anyone still feel ill with graves when thyroid levels 'normal'?

post levels when I get results tomorrow but 6 weeks ish ago I was in range). I still get waves of...

Graves disease and Pregnancy

consultation with my endocrinologist yesterday, she has now reduced my dose to 30mg carbimazole per...

Graves disease treatment

carbimazole. He has been reluctant to do this because my husband has urinary problems and now has...