Endo and rai

hi had graves for six months and maybe longer didn't find out until blood tests by gp in summer. Taking crabisamole 30mg until December then reduced to 15 mg a day. Saw emdo today and have decided on rai treatment now taking place feb11 . Are the NHS now going down this route more as she was quite happy to suggest Rai.

[asiatic]

As someone with Graves and TED I am surprised how quickly you have gone from diagnosis to a definitive treatment. Normally Carbimazole would be given for at least 18 months and titrated down slowly to try and achieve remission. It is of course a personal decision between surgery Raj or long term drug therapy. I hope you were warned about the possibility of Thyroid eye disease after RAI.

[pennyannie]

Hello Gig

As previously expressed, Carbimazole should be for about 15 months with a view to titrating down and hopefully achieving remission. RAI is final, no going back ?

Graves is an autoimmune disease and as such it is for life. Your thyroid is the victim of an autoimmune attack, your thyroid is the victim in all this, NOT the cause.

You will still have Graves after drinking a poison that goes throughout your whole body -

and will have to deal with Graves -though now not life threatening, it's certainly can be life limiting - plus hypothyroidism with the very good chance of not receiving the appropriate hormones, plus the possibility of thyroid eye disease, and the possibility of swollen, baggy eyes, which I found particularly upsetting.

RAI is a quick fix, 20 minute outpatient appointment and then you're discharged back into primary care, where knowledge and understanding of Graves seems limited.

Of course you will be encouraged to go for the RAI - one less patient on the waiting list -

tick box exercise - job done - move on - you are a hospital number in a time slot -

Please think this through again - I read there are trials taking place for an antigen to the Graves antibodies - after Rai you've no chance and living without this major gland is no fun, it's there for many reasons, its the conductor of your whole body metabolic system.

Elaine Moore Graves Disease A Practical Guide - there is also a very comprehensive website - this lady has Graves and had Rai - it's stateside so some medical differences -

Your thyroid and how to keep it healthy by Dr Barry Durrant Peatfield - this doctor is hypothyroid and talks common sense - a good go to for all things thyroid.

Prof Toft an eminent endocrinologist has now published his paper stating that he is not referring any more of his patients forward for Rai as there appears not to be the necessary help for patients back in primary care.

I think that says it all

November 2018 Prof Toft - Thyroid Hormone Replacement - A Counterblast to Guidelines.

it's on here somewhere, sorry not savvy enough to resurrect it for you.

Kick the Rai into touch and let the endo do their job and adjust your medication to give you a level of weakness, from where you will be better able to understand what is going on. Read all you can, you may probably have to become your own advocate.

[SlowDragon Administrator in reply to pennyannie]

Here's the Prof Toft article

Professor Toft recent article saying, T3 may be necessary for many after RAI and that current treatment following RAI may be inadequate

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

[pennyannie in reply to SlowDragon]

Thank you Speedy slowDragon - once my brain cells fully recover I'll go on a computer course at the library and sort myself out. xx

[Hidden in reply to pennyannie]

Thanks for your reply very detaiked

[Marz]

How was your Graves diagnosed ? There have been a few mistakes posted of late ...

[greygoose in reply to Marz]

This is a very important question. I'm horrified by your endos desire to rush you into RAI like that! Before you agree to anything, make sure you actually do have Grave's. Were your Grave's antibodies tested - TRAB or TSI? If not, insist they are tested before you go down that route.

[Hidden]

Hi all thanks for your informative replies. I was diagnosed with graves following antibody checks and was found positive for tsi. I wasn't aware of such a downside to the Raj treatment. I guess I may have been too hasty along with the endocrinologist to have this treatment. However I have suffered enough with graves and epilepsy and I thought this would at least takeaway some of the symptoms of graves.

[Hidden]

Does Rai affect any other medical confition

[asiatic]

What are your current symptoms and your latest blood results ?

Perhaps you just need a dose adjustment or changed to block and replace. I had an endo pushing me towards thyroidectomy. I got a second opinion and my current endo is brilliant and has adjusted my meds and I feel great now. As everyone is advising step back and reconsider if RAI is really the best option for you.

[Hidden]

No sleep sweating like hell. Feel crappy aches and pains

My tsh has risen from 0.01 to 0.04 inn six months on carbizamole

My t4 and T3 are still miles too high I don't have access to the numbers right now.

The tsh

receptor antibodies were substantially higher I don't have that number on my phone now.

So if the tablets don't work what more can I do.

[Valarian in reply to Hidden]

It really would be helpful if you could post your original results, the results when your carbimazole was reduced to 15mg, and current results.

A lot of people with Graves’ have FT3 and FT4 levels double the reference range when first diagnosed. The starting dose of carbimazole is quite often as high as 40mg/day, and this isn’t usually reduced until thyroid levels are within range. If your results are really ‘miles too high’, I don’t get why your carbimazole has been reduced to 15mg/day, which is quite a moderate dose.

TSH takes ages to recover, and may never do so. It certainly won’t go up if your thyroid levels are substantially above where they need to be. Typically endos don’t begin fretting about TSH in Graves’ patients until they’ve been euthyroid (ie within range) for several months. Even then, treatment usually continues as planned, it’s more that TSH remaining rock bottom as thyroid levels recover can be an indication that remission is less likely.

I’m not saying RAI is definitely the wrong treatment at this point, because if your thyroid levels clearly aren’t responding to antithyroid treatment, depending on symptoms, more radical treatment may be required sooner rather than later. I’m just wondering why, if your thyroid levels are still high, your carbimazole has been reduced. (Your epilepsy may be an additional consideration, but if so, your endo should explain this).

You can’t rush Graves’. Typical antithyroid treatment times are anywhere between twelve and eighteen months. I’m currently at 18 months, and likely to continue for at least another three.

Remission rates for Graves’ aren’t great, but in the U.K., most of us are given a reasonable shot at achieving it before going down the RAI route.

[Hidden]

Tsh results 0.001 July then 0.004 now unchanged since reducing carbizamile

Free T4 25 July then 27 now 25 again after reduction in carbizamile

Free T3 13 then 15 now over 20

Hope this helps

[Valarian in reply to Hidden]

It should give the reference ranges next to the test results - usually in brackets after the result. These differ from lab to lab, so you need to post them every time.

That said, I suspect your FT3 result is the problem.