Graves’ disease 2 years on

[Welshmumm]

Hi, got diagnosed 2 years ago and what a roller coaster! Still in carbimazole 20mg but feeling lethargic, thyroid swelling up periodically and generally feeling like 💩. Bloods done a few days ago so will ring up consultant to see what is what. My question is, can I stay on carbimazole for longer? I don’t want the radio iodine or surgery, just want to feel better again.

[pennyannie]

Hello Welshmumm

Well, Professor Toft the eminent endocrinologist is suggesting just that for his Graves Disease patients, and I wish I knew all this back in 2005 when I was told I was to have RAI.

His article is on this website, in full, and is entitled :-

Thyroid hormone replacement - a counterblast to guidelines - December 2017.

In which he states :- 3rd page and a third of the way down :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine1-31 or surgery in patients with Graves disease irrespective of age or number of recurrences of hyperthyroidism ".

There are many people on this website who are staying on AT Drugs way past the so called cut off point. You are on a roller coaster, and the job of the endocrinologist is to try and keep you as comfortable as possible during this difficult phase, where your immune system is attacking your thyroid, causing very difficult and sometimes life threatening symptoms.

There are options to Carbimazole, should you wish to try a different AT medication and it is important that through this period you maintain your ferritin, folate, B12 and vitamin D at optimal levels as no thyroid hormone medication works effectively if your core strength isn't well maintained.

You might like to take a look at the following website run by a lady who has Graves Disease. She went through RAI treatment in the late 1990's and found no help or understanding in her journey, so wrote a book to help others in the same predicament. Elaine Moore is a leading researcher into all things Graves, and runs a well respected and leading website in the States, open to everybody to use. There is an open forum much like this amazing site, where we can read and learn from each other, and there are sections on autoimmune disease and what you can do to reduce this portion of the disease which is not well understood or managed in the current NHS system.

Graves seems to be stress and anxiety driven, and there needs to be some personal involvement as to relaxation and life style choices which may need to be re-evaluated along the way to recover your health.

I am with Graves Disease and after RAI I now manage Graves, thyroid eye disease and hypothyroidism. I am now self medicating and buying my own thyroid hormone replacement as Levothyroxine, the only thyroid hormone offered for hypothyroidism on the NHS doesn't give me back the health that I currently enjoy. I'm a work in progress, still learning, but at least now, on the right track.

[Lalatoot]

Yes you can stay on carbimazole for longer. I was on it for 3 years. Stopped twice within that time to see if I was in remission but went hyper again. I never felt right on carbimazole even though my bloods were in the normal range so I opted for RAI. I am still not feeling well but I think I have a better chance of balancing my meds to eliminate the hypo symptoms now I am hypo. We are all individuals and must try what we think is best for ourselves.

[Fruitandnutcase]

If you don’t do it already try taking high strength, slow release vitamin C along with your carbimazole. My pharmacist came out and told me when I picked up my first prescription for carbimazole - I started carbimazole on 20 mcg and after a month doubled up to 40 mcg. I only took it for a year then went into remission. I always took 1000mcg vit C with zinc when I was taking carb and I felt good.

Hopefully you will find enough evidence online and on here to support taking carbimazole long term.

When I stopped my block and replace treatment some years ago they were always telling me that if it didn’t work I would have RAI - no way did I want that so I set to doing what you are doing - looking for evidence like that of Dr Toft and other cases of long term use of carbimazole - then spoke to my GP and the answer was, no, they couldn’t force me to have rai and no they couldn’t refuse to treat me if I wouldn’t have RAI.

I always felt endos don’t like it because it means they can’t sign you off back to the care of your GP who may or may not be able to give you enough T4 to keep you feeling well - and heaven help you if you need T3 too.

Another reason - I discovered that scientists are working on a vaccination against Graves - look up apitope.com/apitope-announc... you will find evidence of that, I’m 71 so it is probably too late for me but to me it offers hope for younger people.

Good luck with it all.