I had a graves relapse in Jan 2021 following covid. I followed the reducing course of carbimazole until my thyroid was back to a normal range and now I’m on 5mg per day for maintenance. RAI has been recommended.
However…
I’ve just had covid again and almost instantly graves symptoms have returned.
Has anyone had a similar experience? I have been trying to read up on covid and graves.
If confirmed, this would be my 4th relapse in 20 years however also 2nd relapse in just over a year so if we are to ‘live with covid’ I will have to consider a more permanent solution.
I would prefer surgery over RAI as I have a young child and I also have discomfort in my neck from my goiter.
Has anyone in the UK successfully negotiated surgery over RAI?
Written by
4thTimeHyper
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Well in theory you and your doctors are partners in your own health care. They should be fully discussing all the options and factors available to you, not dictating their preferred option.
You have valid grounds with having young children & if you can explain your decision having done your own research they would be very wrong to refuse.
I have hyper nodule & when I mentioned surgery as an option I was told RAI was my treatment plan. This was before the cause was conclusively confirmed although they strongly suspected nodule was the cause.
I did see a ENT surgeon at the time, who said if RAI was logistical difficult (I’m a carer) he would remove the lobe with nodule, but that RAI was the easier choice. He then discharged me for endocrinology to treat. In other words I’d have to battle it out for surgery. I’m currently well on carbimazole which I plan to remain on long term.
I’m also just recovering from covid, I tested positive in October but had minimal symptoms, not so lightly this time felt really unwell & have been left with feeling of really swollen thyroid, like a hand strangling me. I also have a blotchy red area under thyroid and petechia dots. I really wonder if it’s affected my thyroid, although my existing thyroid issue is not autoimmune.
I get it that RAI is easier and cheaper but it has never felt right for me. I will keep researching.
When I was originally diagnosed 20 years my issue was toxic nodules and not graves but later I developed graves so its always worth rechecking. My thyroid is heavy and swollen also and I had this post covid last time.
I think if you can stay on the AT medication this has the best option and this is becoming more widely accepted as the treatment suggested by patient focused specialists and endocrinologists for the majority of their patients.
If your thyroid is restricting your breathing and eating then obviously you need to think again and I would go with surgery as it is much cleaner and more precise than drinking a toxic substance that is known to be taken up, to a lesser extent, by other glands and organs within the body, and just one issue amongst many other short and long term consequences.
I don't think it's an option of responding well to RAI, if that is what you are referring to :
The other issue to consider is primary hypothyroidism caused by either medical intervention is generally only treated within the NHS with T4 monotherapy and in primary care where the knowledge and ability to even run the appropriate blood tests is limited.
A fully functioning working thyroid would be supporting you with trace elements of T1.T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100mcg.
T4 monotherapy is just one option, and an inert storage hormone, that needs to be converted by your body into T3 the active hormone that every cell in your body needs in order to keep you well and symptom free.
Many forum members, including myself, have been forced to self medicate with T3/T4 combinations or to take Natural Desiccated Thyroid which was the original successful treatment for hypothyroidism for over 100 years and contains all the same known hormones as that of the human thyroid gland.
Both T3 and NDT were available on the NHS until around the early 2000's when sourcing of same became much more expensive and budgets were cut rather than sourcing product elsewhere.
Yes, so did I but I didn't know any different back in 2005 and just followed the doctors orders :
Thank goodness for this forum which was instrumental in my recovery and now I'm self medicating with full spectrum thyroid hormone replacement and much improved.
hello there, I have graves and am currently on the waiting list for a thyroidectomy.I have tried carbimazole only and with thyroxine as block and replace.I tried for remission and relapsed within 2 weeks.I cannot have RAI as I also have TED.I would have pushed for surgery though as I worry about long term after effects of RAI. If I was you I would just say I had a young child, and it would be impossible to find childcare for the time taken for it to be safe to be around them.I have a little dog and I would have used that argument and stuck to it.Wishing you well.
Thank you! I will say that and to be fair it is true. We have no family that can help us. My husband had to take our little boy to work when I had covid!
I had RAI around 20 years ago, at the time my youngest daughter was about 3 and we had dogs and cats. I carried on much as usual afterwards, did the school run with the children in the back of the car and apart from not having them sat on my knee for about a week life wasn’t disrupted and nobody suffered any I’ll effects. I had already had partial surgery many years before so I chose to have RAI, wish I had done it sooner rather than struggle on with the relapses.
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