Thyroid UK

Graves' disease, struggling big time

Graves' disease and struggling with relapse , I kind of feel like this is a place I can get it off my chest . Where people understand just how lousy I feel. So I've relapsed , after visiting A&E with heart rate 5 weeks ago, scan, drs and endo latest bloods show my ft4 still over 100 so my carbimazole dose has been increased. The conclusion that I've come to along with my endo is surgery. My thyroid is so large I feel like I'm chocking, I can't see past feeling like this and I'm bearly functioning . I'm losing my hair, l look double my age and I just want my life back I miss it !

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I was diagnosed only when my Thyroid swelled into a goitre, my eyes bulged, I was skin and bone despite non-stop eating and a nervous wreck with shaking hands and profuse sweating. That was in 1970.

The carbimazole was overdosed and I blew up like a balloon in 10 weeks I had put on 2 stone, suffered with agonising cramps everywhere in my body and was told I was slurring my speech and did I drink ?!

After going into remission, it came back but I was in denial.

After 6 months of Carbimazole again and 3 weeks in hospital drinking iodine and milk I had the subtotal Thyroidectomy in 1974.

It was a success and wish I'd had the op in 1970.

I knew nothing of my blood results as were not told in those days. But I took my own pulse sitting down and was 160. I was so breathless and weak after climbing stairs which took 20 seconds for each step, I had to lie down on my bed for 20 minutes until I had the energy to move again.

That was 50 years ago. My Thyroid after 10 years had grown back to normal size.

Good Luck

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Hi, can’t offer you anything but sympathy and good wishes. Things sound pretty bad for you at the moment but hopefully once you’ve had your operation life will improve for you.

My sister in law had her thyroid removed about 45 years ago - she had thyroid cancer - she is slim as a willow and so active she puts me to shame and I’m not exactly a couch potato so once you’ve had your op you could be like twinkleyt and my sister in law.

Hopefully your consultant won’t let things drag on and you’re feeling well by summer.

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Horrible experience. I know that I have not benefitted from doctors and drugs. I have a goitre, I have had hyper thyroid, auto immunity, lots of times feeling very rough, adrenal stress etc. Right now, 30 years later, having chosen powerful supplements over drugs I feel good physically and many problems have gone. I do use the doctor for blood tests but when I was told that carbimazole would wipe out my immune system I refused and upped my supplements.They suggested having a thyroidectomy, but I did not trust the consultant at the time, he couldn't explain anything to me properly. It is difficult when you feel so rough, but there is good info out there hat can help. if you want to know what has helped me let me know. Even just drinking more good water, doing some juicing, taking lots of vit C, some essential oils, some Vit D3 and getting some trace minerals will help. Cut out as many chemicals you put on yourself and eat, breathe in as you can. Get lots of rest. I hope you start to feel better soon.

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