hi I have hyperthyroidism and have Graves’ disease. I have my consultant appointment next week. I got very ill a few weeks back don’t know if it was the case as I was told to come off my meds 5 months ago. Any tips or advice what diet I should follow ? I have lost so much weight due to my thyroid
how do I get my thyroid levels to go normal as my levels are very high and I get palpitations always especially at night time which is so scary. I’m now back on my meds carbimazole and propananol ans I have my appointment next week with endocrinology. Any advice what to eat to get thyroid low and normal again so I can get my weight back up?
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Gee14
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I’ve added information from your second post to this one, so your questions from today are all in one place.
So we can offer better advice, can you tell us more about your thyroid condition, eg when you were diagnosed, ongoing symptoms (other than the palpitations and weight loss), current medication & dosage (how long have you been taking the carb/ proprananol?) plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Hi there, did your dr stop your carbimazole to see if your thyroid would behave normally? They tried with me 2 or 3 times, and I always relapsed. The last time it I was 'normal' for a few months and then rapidly deteriorated until my free t4 was over 80. It was extremely scary. I lost a huge amount of muscle mass. The only way to gain that weight back is to stay on that carbimazole. Keep on with the propanolol, at least until your heart gets back to normal. When everything is back under control you might want to wean yourself off the propanolol. And eat healthy, meals and snacks, no fad diets, no low carb diets.... don't put your body under any more stress. Try to reduce your stress as much as you can, and know that the way you feel at the moment is entirely due to being hyper, and that it will calm down with the right level of Carbimazole.
Can you please share your blood test results at diagnosis along with the antibody found positive and over range and the medical evidence of Graves Disease.
We need to see your TSH and Free T3 and Free T4 readings and ranges and the antibody is probably written as a Thyroid Receptor number - maybe written as a TR ab :
The Carbimazole is an AntiThyroid drug and blocks your T3 and T4 rising any higher and slowly - over the course of around 2 years - the AT drug is reduced as your thyroid T3 and T4 slowly fall back down into the range.
Were you well on the AT drug - were things improving - as it reads as though the AT drug was stopped too soon :
We do now have some research papers that suggests that the longer the patient stays on the AT drug the better the long term outcome for the patient :
Please read these 2 research papers - maybe make copies to take with you at your next endo appointment - as if well on the AT drug it is better to wait it out and take the AT drug - rather than agreeing to the definitive treatment options or surgery or RAI thyroid ablation at this point in time.
Graves is an Auto Immune Disease and the thyroid is the victim of an attack from your immune system - so quite why your immune system has decided to turn and attack your thyroid - rather than defend it - is the 64million $ question.
There is no cure for Graves, and the AT drug is used to block your T3 and T4 rising higher and simply puts you into a holding position -
much like a plane waiting to land and circling in a holding position -
while we wait for your immune system response to calm down and your thyroid reset itself.
My experience of this is 2nd hand, as in I have hypothyroidism but my sister developed hyperthyroidism. Her endocrinologists were very keen to give her the radioactive iodine after the carbimazole hadn't worked. She was afraid to go that route as another family member had had it done and has had very compromised health ever since.
My sister was advised to take carbimazole for a max of 9–12 months, I think, and to get the radioactive iodine or thyroidectomy if it hadn't worked by then. She continued on carbimazole for 2 years, much to at least one endocrinologist's disgust, but did finally get hwe thyroid back to normal. Everyone is different, and that was a rough 2 years for her with lots of palpitations, so you do have a lot to weigh up. The best of luck.
I was diagnosed in October 2023 and now titrating carbimazole. I've found that taking my meds on time, reducing stress/ anger response to situations, accepting help and taking regular rest breaks has helped. I'm now off diltiazem similar to propanlol and now only on 5mg carbimazole once daily. As Dandy said, it takes a while to feel better, I still have up and down days. It definitely helps to figure out your triggers and minimize/ avoid them until your thyroid normalizes.
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