Thyroid surgery v RAI

[Welshmumm]

What are the pros and cons?

[bantam12]

Don't be put off by negative replies about RAI, if works very well for many people. I've had both surgery and RAI and I am very well on Levo.

[jimh111]

It's difficutl to answer without personal experience. Myself I would opt for surgery by an experienced thyroid surgeon. We sometimes see RAI patients who seem to struggle to get their hormone levels right afterwards. Whether that is because of the RAI, or the type of thyroid disorder that is usually treated by RAI is not clear. So, just a hunch I would opt for surgery.

I haven't had any dealings with them but I believe this is a good support group for Graves' patients tedct.org.uk/ .

[Welshmumm]

Sorry what is TED?

[bantam12 in reply to Welshmumm]

Thyroid Eye Disease.

[Valarian]

Looking at your earlier posts Welshmumm, you’ve only been on Carbimazole since April, so it’s still early days yet. You can expect to be on Carbimazole for 12-18 months, and although RAI/thyroidectomy may be mentioned during this time, and it certainly does no harm to do some research, you shouldn’t be pushed into making a decision for quite some time yet. Even then, if my thyroid appeared to be under control with a low dose of Carbimazole, I would be pushing to continue this in the long term rather than agreeing to a more radical option.

That said, it seems that many people have been successfully treated with RAI, but as they are well, you won’t meet many of them here (apart from Bantam12!), which makes it difficult to make a fully informed decision.

Are you having regular blood tests - say, every six weeks ? These should give you some idea as to how well the treatment is working, although getting the dose of Carbimazole right can be a bit hit and miss.

Did they test your antibodies when you were first diagnosed - if not, what do they think is causing your thyroid to be hyper, and on what basis ?

Your name suggests you may be in Wales, if so, whereabouts ? The team at UHW in Cardiff does seem receptive to new ideas and to listen to its patients, but if you’re in North Wales, that won’t be a great deal of help to you .

[Welshmumm in reply to Valarian]

I have been on carbimazole since the start of October 2017. I got diagnosed as having Graves’ disease by the endo in April 2018. I am NWales and we seem to have a shortage of endo’s, hence I was referred as an urgent case back in October and got seen in April. Normal waiting times I am told up here is over 12 months.

The carbimazole is working but the thyroid for me is getting worse. I feel like I am being strangled by it. I am tired even though I am sleeping much better. I ache all over and my mood is very low and it is this I am struggling with. I am propanol to take the edge of my mood and some days this is fine but there are more sad days than the good ones.

So I know the carbimazole is working but hate feeling like this so for me surgery is looking the better option.

Thank you all for replying.

[Valarian in reply to Welshmumm]

I’m afraid it’s a long haul. Quite a few of the hypers here have been through a bit of a slump a few months in, after an initial feeling of euphoria that some of the worst symptoms had vanished.

My endo explained to me that living life with a fast metabolism can seem pretty seductive (although not very healthy!) , and that everything can feel a bit flat when thyroid levels come back into range.

If your thyroid really does feel physically different, it’s something to discuss with your endo (or have you already done this ?)

I know this will sound difficult, but stress really doesn’t help, so try to avoid it if you can. Some people find relaxation techniques or yoga work well.

[Welshmumm in reply to Valarian]

I did mention to the endo last time I felt the thyroid was pushing down on me but at the time it was bearable. I can feel the thyroid swelling getting bigger, going back to normal. A very odd sensation but I can feel when it is doing it.

That makes sense what your endo has said. The feelings I have must be my thyroid levels being normal. I have probably had this for sometime and now it is getting back to normal range, my body is having some withdrawal effect?

I have a stressful job so am off work at the moment and listening to my body for once. That was the advice of the endo, which I ignored and reduced my hours but ended up working full hours in my half days so just made it worse and my anxiety went through the roof.

I am spending time looking after me, by walking, reading, sitting and relaxing instead of rushing around cleaning my house!

Thank you again, this site is so useful. Knowing I am not going crazy after all!

[Welshmumm]

I have been on carbimazole since October 2017, diagnosed with the Graves in April 2018.

[pennyannie]

I think you need to try and do your own research before making this decision.

I have Graves and was treated with RAI in 2005 the consequences of which gave me the additional health issues to manage as well as the Graves Disease - namely Thyroid Eye Disease and Hypothyroidism.

I was on Carbimazole for 15 months and it was taken as read I would have RAI. I didn't know any different and wasn't best placed to start reading up and questioning the medical professionals.

RAI is the quick fix - the cheapest NHS option undertaken in outpatients and discharged back to Primary care for the management of the consequences. You drink a toxic substance that is meant to kill off your thyroid - but in drinking this down, what and where else does this toxic substance go and do ?

Surgery sounds more final - it's an operation and all that that entails - in theory it sounds " cleaner " - the thyroid is removed and Primary care pick you up for the long term management of the consequences.

The Graves Disease is not eradicated - it is an autoimmune condition - you have it for life.

The thyroid is the victim of the disease, not the cause.

Either way you end up in Primary care and your doctor has to manage your health issues.

People on these sites are generally here because they are looking for support and advice as they feel failed by their doctors and or endocrinologists.

Elaine Moore's book Graves Disease A Practical Guide is very useful - there is also a very comprehensive website - USA based -

Professor Toft 's article - Thyroid hormone replacement - a counterblast to guidelines -

contains a section on why he is not referring his patients forward for RAI - let alone how patients are being failed in the management of hypothyroidism in primary care - !!!!!

sorry, don't know how to " give you this link " but it's on this website, in full, if you know how to resurrect it.

I hope this helps you a bit, it's very hard to know what to do. I just hope you are given options as to your treatment, and that your primary care team are able to manage your long term care.

Hope this is of some help to you - sending a hug xx

[Welshmumm in reply to pennyannie]

Thank you I will have a look for the site. I have had support from the site. The system does let you down. Passing the book from GP to hospital, both playing each other of. Long waits in between and nowhere to turn for help and support.

Thanks for everyone who has replied.