hi, I’ve Graves’ disease and have been on PTU for over 4 years. My specialist recommended that I go for surgery or RAI therapy. Has anyone gone through RAI with small children at home - would like to know what did you do? Keep away from the house for the duration recommended?
I’ve a 2 & 4 year old at home and if I do go through RAI I’m thinking I’ll have to short term rent somewhere so I’m not in contact with my children for the recommended 21days. Which seems like a huge cost and impact on family life… appreciate any advice or stories of your experience
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If so this is an auto immune disease for which there is no cure and all this treatment does is flip you from being hyperthyroid to being hypothyroid which the mainstream medical seem to think is more easily treated in primary care.
In my experience my treatment for hypothyroidism after ingesting Radio Active Iodine has been infinitely worse than my treatment with Anti Thyroid drug when diagnosed Graves.
Please do your research -
RAI is a slow burn and is taken up to a lesser degree by other glands and organs within the body :
Primary hypothyroidism caused by RAI is said to be more difficult to treat :
RAI is known to trigger symptoms similar to those of Sjogren's Syndrome and fibromyalgia.
elaine-moore.com - for all things Graves and auto immune thyroid.
The most current research is suggesting that longer term AT medication a better option for the patient - it's all a question of degree and how well you feel on the AT medication :
Thank you for your comment and resources. I’ll definitely take a look at these and other related studies. Really interesting to read that relapse rates decrease the longer AT medication is taken…
Graves is an auto immune disease and here is likely a genetic predisposition with some one in your family, maybe a generation away from you with a thyroid health issue.
Quite why your immune system was triggered to attack your body is the question that only you can try and think through, understand, and give further thought to.
If well on the AT medication there is no reason that you can't stay on the AT drug longer term and give your body enough time to heal and your immune system enough time to calm down and for you adjust to maybe learn to manage better your life triggers.
If not well on the AT medication a thyroidectomy is cleaner, and more precise than a toxic substance which we now have research on that warns of longer term lower QOL .
Long term AT medication is likely the most expensive treatment option.
Hospitals have targets to meet and O/P waiting list times just one constant challenge - and doctors are encouraged and incentivised to reduce O/P waiting list times and process patients back out into primary care as quickly as possible.
Further up I offer a link to a research paper which is entitled ;
Quality of Life is worse at 6 -10 years after Radio Active Iodine Therapy for Graves Disease compared to treatment with anti thyroid drugs or surgery. :
You will find the majority of abbreviations used here in my Vade Mecum document:
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information.
And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again.
In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.
If there is anything you'd like me to add, let me know.
I was in the same position as you years ago (although my children were slightly older) and all relations hundreds of miles away so I opted for a thyroidectomy purely because it meant less disruption to my family. My hubby coped whilst I was in hospital and my children visited me in there (just had to hide up my neck with staples in with a scarf) - probably now you would only be in for a night, if that. I also was really pleased that my scar was just a thin line in the crease of my neck which nobody notices .
However, from what I can gather now the doctors prefer patients to have RAI as it is quicker and less expensive for the NHS (it's not because it is in any way better for you). I still don't know for certain what thyroid disease I had I only know that I went very overactive with a goitre which carbimazole didn't put right but I have no regrets at my decision. Seriously, is it really 21 days you have to stay away from your family?
Delgor, thanks for sharing your experience. Technically i have to limit close contact to my children 15min a day up to 21-23 days after RAI but practically I think it will be easier to stay away for those days.
I’ve also had a consult with surgeon to see pros/cons and I understood there’s more risk when treating Graves with surgery…such as osteoporosis and replacement thyroid medication. Also recovery time was quoted 2weeks.
Since the surgery are you now on replacement thyroid medication?
Oh yes - if you elect to have RAI or thyroidectomy you will obviously go underactive and need medication for life. That's where most people have come unstuck as the medical profession have for years said that we should all get on with Levothyroxine only (T4) and that's not the case for everyone and a lot of people like myself need a combination of T4 and T3 to feel well.
Yes, I do have osteoporosis but I had an early menopause and was never advised to look after my bones but didn't fare too badly on that score up until recently but that's another story. I wish you well in whatever you decide to do.
You can stay on PTU long term, or opt for surgery if RAI isn’t for you.
RAI is the most efficient option but ultimately it must be right for you.
I delayed RAI as my children, although not small, have complex needs. The nuclear technician I spoke to about the isolation requirements just said - get your husband to care of them for a couple of weeks. That was after I said I’d need to make arrangements prior to treatment. Apparently details are usually given until time of appointment.
The attitude alone before treatment was enough to put me off.
PurpleNails, thank you for your comment. My specialist seems keen for me to come off of PTU as soon as possible although I’m a bit sceptical that it has more to do with cost to the NHS so interesting to hear staying on PTU long term might be an option.
So can I understand you’re still on PTU long term?
I’ve been on carbimazole for over 3 years. Started on 20mg now on 10mg alternating with 5mg.
I have a nodule so tends to be more stable than graves but no possibility of remission / relapse.
Carbimazole is first choice and considered slightly safer than PTU. PTU is older drug. PTU also has a fractionally higher risk liver but is used during pregnancy.
My GP monitors me now (when I remind them) the specialist didn’t want me on her books if I didn’t undergo treatment soon.
It’s the cost of monitoring doctors discourage. They view hypo as a simple fix. I’m sure many have good outcomes & don’t visit forums for help but a percentage struggle.
I would say that if you feel well on PTU then you have no urgent need for RAI. Endocrinologists favour that treatment because it’s the cheapest option and it gets you off their list. Don’t be pressured into having any definitive treatment if you’re doing well on PTU. I bitterly regret succumbing to the persistent pushing by my Endo.
Thanks gingernut44 for your comment. With all these information I’m starting to think really there is no need to rush and that I should take some time to do more research/thinking!
pennyannie’s advice is excellent. If in spite of that you still want to go ahead , get yourself tested for Hashimotos. The NHS tends not to rest for the anti bodies for this so I went ahead and had RAI before finding out that I also had Hashimotos. I can only describe it as a disaster.
mugs19 I’m sorry to hear about your experience and hope that things are being managed for you ok now with Hashimotos. Didn’t even realise you could go the opposite way after RAI - definitely food for thought and I would consider testing if I go the RAI route.
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