Graves

[Boaby]

I was diagnosed in November with Graves’ disease, on Carbimazole and doing ok. Have just been told that this is not a long term drug and will have to think about RAI as the way going forward. Anyone been through the same situation?

[Fruitandnutcase]

Hi, I had Graves in 2012-2013, I was treated by ‘block and replace’ which was 40mcg carbimazole a day and ever increasing amounts of levothyroxine, I reached 100mcg thyroxine by the time I stopped. I was told my block and replace was the ‘fastest’ treatment and would take a year - didn’t seem all that fast to me at the time mind you.

Anyway, it did indeed take exactly a year. My treatment was completely stopped on the final day I saw my endo.

I was always being told that should I relapse I would have RAI - I thought ‘no way’. I kept telling them that, I saw a different endo at every visit - I even had one girl hold up an imaginary pill between her thumb and forefinger and say ‘it’s only a little pill. I said I didn’t want to become hypo, she actually said ‘oh you won’t become hypo’.

Anyway, I got home, worried a bit for a week then went to see my own GP and said that I did not want RAI and a) could they force me to have it - no they couldn’t and b) could the hospital refuse to treat me if I refused RAI and the answer to that was also no.

So I went home and concentrated on eating well, lots of vegetables, oily fish a couple of times a week, cut back on sugar etc. I ended up going on a totally gluten free diet - I didn’t get checked out for coeliac first which might have been a good idea as now I wouldn’t want to eat gluten to be tested. Anyway, I do home fingerpick testing and I have watched my thyroid antibodies plummet since I went GF. They may have been going to reduce by themselves but I don’t know so I’m not going to eat gluten, I’ve got used to my way of life now anyway and I eat a very varied and healthy diet without gluten. I’ve also got IBS and being GF has really helped that.

So, don’t let anyone bully you into RAI, when I was compiling evidence as to why I wanted to stick with carbimazole (I kept very well on it) I discovered a lot of people had been on it for a long time. I think I even found a statement in Dr Toft’s little book Understanding your Thyroid where it said something along the lines of people being on it for extended periods of time. If you put another post on here you will probably hear from people who have taken it for a long time.

There are even trials of a vaccine being produced and once your thyroid has been killed off then that’s it for you - you no longer have a thyroid and have to rely on your GP being willing or able to spend the time getting you the right amount of artificial thyroid to make you feel well. Having read a lot of case stories on here I didn’t feel confident that that would happen so I preferred to hang on to mine even though it was a bit dodgy.

I did say to my GP that I might reconsider if it was a matter of life and death but otherwise I’d want to go back onto block and replace.

I’d say, keep a daily diary as to how your body feels throughout your treatment. I always did that and I made a note of all my medicine changes. I also kept all the evidence I needed to justify not having RAI and I write down any questions I had for when I saw my endo - otherwise I’d forget to ask.

When I got my first prescription the pharmacist came out and told me to take high strength vitamin C along with it which I always did. If you don’t know the levels of your vitamins B12 and D, ferritin and folates find out. I gave up begging and bought a home fingerpick blood test which told me everything I needed to know. Including T3 - in fact that was what got me started on home testing - they were discussing RAI and in a whole year I hadn’t ever had my T3 tested!

If you haven’t joined thyroiduk.org think about doing it, I would also read as much as you possibly can about the thyroid and other people’s experiences and ask questions on here like you have done, there will always be someone with the answer.

If you’ve reached the end of this - well done you and good luck with the Graves, I didn’t think I’d ever feel normal again and I do - or as normal as I’ll ever be 😉

[Boaby in reply to Fruitandnutcase]

Thanks for sharing your experience, I don’t want to have RAI unless absolutely necessary, due to lock down not sure when I will get to see endocrinologist. Have been told to know reduce carbimazole to 5mg and see you I go on this small dosage

[pennyannie in reply to Boaby]

Boady,

To have had your Carbimazole reduced I presume you have had a blood test - do you have any results of a TSH, T3 and T4 you can share with us ?

How are you currently feeling ?

Ps I think Fruit and Nutcase meant to type B12, D, ferritin and folate - and yes, totally agree with everything written :

[Marz]

I have read your Post and helpful Replies of two months ago. Am wondering if you had the suggested anti-body testing to confirm Graves ?

[Boaby in reply to Marz]

GP said I had anti body test which confirmed Graves

[Marz in reply to Boaby]

Do you have a copy ? GP's rarely test anti-bodies ...

[SlowDragon Administrator in reply to Boaby]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Usually TSI or Trab antibodies to confirm Graves’ disease only done by endocrinologist

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have Hashimoto's) diagnosed by raised Tpo or raised TG Thyroid antibodies...Or with Graves’ disease

Ask GP to test vitamin levels and ALWAYS get actual results and ranges

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

[pennyannie]

Hey there again Boaby

Have you now been given a definitive answer and proved positive for the Graves Disease TSI/TRab antibodies ?

I can only repeat my answer to you from your previous post.

What else I can tell you, to quickly answer your question today is that according to the NHS guidelines :-

RAI is the treatment of choice : ( but this may not be in your best interests ) - it's the cheapest option and just a 20 minute appointment in the Nuclear Medicine Department, probably in the hospital basement somewhere, and you're given a tablet or drink to ingest :

There second option is to have surgery to remove the thyroid - costs more - sounds a lot more dangerous :

The above two options are pretty dire : either drink a toxic substance to burn your thyroid out in situ with maybe no discussion offered as to the other consequences of ingesting RAI :

Or having your throat slit open : it is a bit like being between a rock and a hard place isn't it ?

It does seem that some people are giving the option of staying on a low dose AT medication for more than the 15 month orso window that the hospital allocate you for treatment:

This option is probably the most expensive in terms of hospital time management and drug prescriptions but it's my opinion a better alternative to either of the above drastic options, which in fact are not solutions as this is an auto immune disease that just so happens to attack the thyroid.

Your thyroid is the victim in all this and not the cause - the cause is your immune system going a bit haywire, but the NHS do not know how to manage your immune system so think by removing the target of the attack they have solved the problem.

Professor Toft the eminent endocrinologist wrote a very interesting peer reviewed paper in 2017, in his final years working with in the NHS. Entitled :- Thyroid Hormones a Counterblast to Guidelines he writes that he is ' increasingly reluctant to refer his Grave's patients for either RAI or surgery " - the article is on this website somewhere for you to read and print off .

Please start reading up and taking an active part in your treatment and please be aware of all options and read more on the Elaine Moore website, and this amazing website, to get a better handle on your situation.

[Boaby in reply to pennyannie]

Thanks doing ok on meds for now will look at articles

[SlowDragon Administrator in reply to Boaby]

Link to Professor Toft article

rcpe.ac.uk/sites/default/fi...

[Fruitandnutcase]

I forgot to say - always ask for a copy of all of your blood test results. In the U.K. you are legally entitled to have them. Don’t settle for things like ‘your results are fine /good/OK etc. Especially if you aren’t feeling good.

I used to keep my blood test results in my notebook along with all the other stuff I told you about.

The reason I mentioned Dr Toft was that he was one of ‘the establishment ‘ and endocrinology is a ver conservative field of medicine - things don’t seem to change and I felt it was more difficult for endos when I was quoting one of ‘their own’.

[Boaby in reply to Fruitandnutcase]

I have never seen any of my blood results will ask doctor for them on my next visit and try to get an understanding of them

[Marz in reply to Boaby]

You can phone the surgery to request copies going back several months - no reason need be given. Say you will be along to collect in a few days if allowed. Many surgeries now have on-line access to records so worth enquiring.

We have to be in control of our own health by obtaining results with ranges so we can check what has been tested and more importantly what has been missed.

Easy to learn about results - go the main website of this Forum . .

thyroiduk.org

Thousands of us here have had to read and learn to regain wellness and there will always be someone here to help 😷

[SeasideSusie Remembering in reply to Boaby]

Boaby

It's much better to just ask the receptionist. Doctors don't like us understanding/knowing so are reluctant to give results even though we are legally entitled to them. Just ring the surgery, ask the receptionist for a print out of your results and say you will pick them up at their convenience, maybe in 2-3 days. They cannot charge and you don't have to give a reason for wanting them, if asked then just say "for my own records".

[Boaby]

Yeah had bloods done about 5wks ago, was told that they looked fine so told to reduce doze from 10mg to 5mg then get bloods done again in 8 wks I have never seen my blood results so not sure what I am supposed to be looking for. Next time I visit I will ask for a print of tests

[pennyannie in reply to Boaby]

Boaby,

Don't worry about not knowing how to read the blood test - it will all be explained to you on here.

The receptionist may be able to print them all off for you - you'll just need to collect them, and then start a new post detailing all the results and the dose of Carbimazole you were on at the various times.

[greygoose]

You really do need to find out about those antibody tests before agreeing to any form of treatment. You wouldn't want to lose your thyroid for nothing, would you? Don't just take your doctor's word for anything, get the written proof.

[Boaby in reply to greygoose]

What would give me the written test? I know blood test results but what specifically?

[greygoose in reply to Boaby]

Grave's antibodies are called TRAB (Thyroid Receptor Antibody) and TSI (Thyroid Stimulating Immunoglobuline).

You also need Hashi's antibodies tested: TPOab (Thyroid Peroxidase Antibody) and TgAB (Thyroglobulin Antibody).

[Boaby in reply to greygoose]

Thanks do I need to know if all of these were done? If so what would readings need to be to confirm I have Graves Disease?

[greygoose in reply to Boaby]

Yes, it's best to have them all done. But, usually, only one of the two for Grave's is done. If either of them are positive, then you have Grave's.

Positive is over the top of the range. Ranges always start at zero, and go up to different numbers, depending on the lab. But, whatever the top of the range, the result has to be over it to be positive.

So, if you have a positive result for Grave's, then you have Grave's. At the same time, the antibodies could also be over-range. But, for the purposes of this exercise, just ignore that.

If the antibodies for Grave's are negative, then you don't have Grave's. In which case, you should not be taking Carbimazole, and should not have your thyroid removed.

So, you might be thinking, so why were my thyroid levels hyperthyroid if I don't have Grave's? Well, you could have Hashi's. Hash's starts with a hyper phase. And, the problem is, doctors tend to jump to conclusions and 'diagnose' Grave's without doing the correct testing. Which is why one should always insist on seeing the antibody results.

I hope I haven't made that too complicated, but it is a bit complicated, I'm afraid.

[SlowDragon Administrator in reply to Boaby]

As greygoose has explained

We see many early stage Hashimoto’s patients misdiagnosed as Graves’ disease

That’s why it’s SO IMPORTANT to get hold of actual results and see EXACTLY what has been tested

[Hidden]

Hi boaby

Please post if you have got your results now

I would be interested to see what they were/are

Thanks

Alps

[Boaby in reply to Hidden]

Still not got any results. Going to ask next visit to Docs, which will be another 5 weeks, this is because I have now reduced Carbimazole to 5mg and no longer on beta blockers.