Thyroid UK
85,624 members100,545 posts

Kill the thyroid or not

Offered many times to have the thyroid out or drink a liquid which would make me radioactive. Sorry I have brain fog so forgetting what doctors told me.

Need help and advice wether I should do this. Its becoming a battle coping with graves disease. I feel I'm going crazy!

15 Replies
oldestnewest

Members who have had Graves will respond. I am hypothyroid but this is an excerpt of a member who has taken her case to the Scottish Parliament about the diagnosis/treatment of people with a dysfunctional thyroid gland. If you have cancer of the thyroid gland there is no option but to have it removed.

Both options you state above will definitely make you hypothyroid, and the majority of members on this site are hypothyroid, either naturally occurring or due to operations or RAI. It is definitely not an easy option.

Excerpt from Lorraine Cleaver's experience.

I struggled to cope with my baby as the fatigue was overwhelming, not to mention the fear from my rapid heart beat and palpitations. It took almost a year for a diagnosis of Graves disease to be made, based on my symptoms and a raised T3 and lowish TSH thyroid test. There was blessed relief when I was prescribed Carbimazole and my thyroid settled down again.

Unfortunately, after a year on this medication, my endocrinologist recommended I have the thyroid removed. His reasoning was that my eyes could become affected with Graves eye disease in the future and that it wasn’t good to remain on the Carbimazole too long. To this day, I can’t reconcile that naive, trusting person I was, who took him at his word, with the person I used to be and the person I am again. I went ahead with the surgery against my better instincts and almost never lived to regret it.

********

I don't know how long you have dealt with Graves but Dr Toft who was President of the British Thyroid Association says this:

5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

Reply

Thank you for the information. I have been on carbimazole for a long time 5 mg a day so its not much but still get lots of symptons

Reply

What treatment are you having at the moment craztchef? I stopped block and replace a year ago this month. By the time I stopped I was feeling well, at the beginning when I was first diagnosed I felt as if I was going round the bend. I felt as if I was mentally ill, I was clumsy, I had the shakiest hands ever, heart pounded all the time, was grumpy etc. my first email on here was to ask if I would ever feel normal again, the answer was 'yes' and I do but getting there took a while and regular increases in my thyroxine ( the Carbimazole stayed at 40mcg a day though)

I was told if I relapsed the next thing was for me to take the radioactive pill. I definitely didn't want to do that so I spoke to my GP who said I didn't have to have it and neither could they refuse to treat me if I refused it. Obviously if I had problems and Boulder no longer take the antithyroid meds I would have to reconsider.

It sounds like you have been on thyroid medicines for quite a while if yu have been offered RAI several times. I intend to try to get back on Carbimazole and thyroxine should I relapse at any point in the future because once I was taking the correct amount I felt well.

Have you ever been at a point where you feel well? I know while I was taking the antithyroid meds any time I felt bad I was always found to be 'within the range' which was fine but I clearly wasn't at the right point within the range for my body to feel good. So you need to be at the right place within the range. Have you ever had your vitamins B12 and D checked out? Also ferritin and folates? They all need to be high within their ranges to help your thyroid. If you are low in any of them you won't feel well either.

You should post any test results and their ranges and let others on here who know more see if they can suggest anything. I know I felt at my best when my TSH was below 1.0 - once it came up to 0.89 I felt good - in fact I only had to be a little over 1.0 to feel rough. That's why I don't want RAI - I don't feel good when I am underactive and I'm worried that if I have RAI my doctors won't give me enough levo to make me feel good. I think you only stay radio active for a little while though not sure exactly how long you have to avoid people for - it isn't forever.

You've got my sympathy, Graves is no fun at all.

Reply

Unless you have Cancer of the thyroid avoid RAI at all costs

If carbimazole cannot be tolerated opt for surgury BUT REMEMBER

a research paper many years ago done in sweden which i wish i could trace stated that after HYPERTHYROId your body is so sensitised to such high levels of thyroid hormones that it can never again function on so called "normal : levels as per the blood tests for Free T4 and t3 and TSH

Also many patients whose thyroid has been removed of destroyed by RAI or even the antibody onslaught of Hashimotos need NDT and not levothyroxine because they need T4 T3 t2 t1 and calcitonin in order to function

So finding a doctor wbo recognises the above and will treat on symptoms is utterly vital

Reply

That's just how I feel - avoid RAI at all costs unless you have to have it because of cancer. Hope you can find and post the link to that Swedish research, I've had a quick look but not found anything that looks likely.

Reply

I have tried for many years to find that research ............i was told about it by an Endo in Surrey who himself was Hypothyroid

but that was around 20 yrs ago

Reply

Annoying when you can't find what you are after. It makes sense though that if your body has been swamped, especially if it has been for a long time, then it may well not function normally again.

Reply

Thanks for the information

Reply

I have been on carbimazole for a very long time, when I turned down surgery and iodine treatment. I wss referred back to my gp. I have blood tests when I feel that I need to check but when I get results they only reply that the blood results are ok. I did go to the doctors one time, it wasn't my usual doctor, I said to him I think I need vitamin d, he looked at me strangely. He said only people that cover up all day from the sunlight need vitamin d, I'm sure I read somewhere that vitamin d is needed for overactive thyroid patients?? Is this true?

Reply

Crazychef, get into the habit of requesting a printout of your blood results with the lab ref ranges (the figures in brackets after your results). GP's 'normal' just means it is within a very broad range and isn't the same thing as optimal. Ask your GP receptionist or Practise manager for your recent results and post them in here or in a new post.

You're right that hyperthyroid patients often have low levels of vitamins and minerals because their fast metabolism uses them faster than they can replace them nutritionally. Ask for ferritin, vitamin D, B12 and folate to be tested as they're often low in thyroid patients.

Reply

You will probably benefit from taking a panel of supplements (they never even mention this sort of thing, do they?). Having a dicky thyroid definitely affects the takeup of vits and minerals into the body. Take not only Vit d3, but also B12 and C; also zinc, magnesium, selenium and maybe iron. It may also be that supplementing your Adrenal glands would help them cope better; again, they can easily become depleted when the thyroid's not functioning properly.

It doesn't sound as if you are on block-and-replace; just a smallish dose of Carbimazole to reduce your thyroid function. It might be worth asking to try proper b-and-r and see if that suits you.

Reply

Sorry, I've been out all morning, It is indeed true. You need your vitamin D to be at a good level. I was also told by my pharmacist to take vitamin C along with my Carbimazole do I take 1000mcg slow release Vit C with zinc every day. I also take CoQ10.

I love this video that someone posted a while ago healthunlocked.com/thyroidu...

You need to do what the others say and request a copy of your blood tests, they can't refuse to give you them - they might try or they might decide to charge you but legally they have to let you have them.

Like someone said block and replace might suit you better but it might have to be done by en endocrinologist rather than by a GP. Must say I'm encouraged that you have bern on carb for years, if I relapse I want to be on it or B&R for years and years.

Reply

Crazychef, there's no going back from RAI which will sooner or later make you hypothyroid so do your research before agreeing to it. If you aren't tolerating Carbimazole it is worth contemplating but if you have thyroid eye disease (TED) RAI can make it worse so thyroidectomy may be a better option. My sister had Graves and after being on Carbimazole for several years had 11 months remission. She agreed to RAI and has been very well on Levothyroxine for 3 years but her eyes are worse.

There are many posts on RAI in the links below.

healthunlocked.com/search/R...

healthunlocked.com/search/R...

Reply

I don't have Graves, but I remember reading that having RAI made it more likely that you would get Thyroid eye disease and that the autoimmune part of Graves would go on to attack other tissues instead of the thyroid. I'm sure someone will have a link to the source of that.

Reply

I had a total thyroidectomy a year ago now. I had Graves and had gone overactive for the 5th time after giving birth. Wish I hadn't done it tho as now I'm on t4 and it's been a nightmare!! I'm having a battle trying to get some t3. I feel much worse now than before as at least the carbimazole was keeping it under control. :(

Reply

You may also like...