Radioactive iodine versus surgery.

[Milynda]

What are your experiences of Radioactive Iodine or surgery for Graves’ disease. I am trying to decide which one to have.

[Charlie-Farley]

Hi Milynda

From what I have read on here radioactive iodine has had profound and lasting effects on some people (not for the better). I’m tagging pennyannie in she has info and knowledge in this area.

You can also do a search on here for other strings talking about this - use key words or there may be some tagged posts 😊👍

[Milynda in reply to Charlie-Farley]

Thank you very much

[bantam12 in reply to Milynda]

I’ve had both and RAI was far easier, quick and easy outpatient appt and no problem afterwards, wish I had done it sooner !

[PurpleNails Administrator]

I was told RAI was my treatment plan & was shut down when I attempted to discuss the option of surgery.

I opted for the 3rd option. Long term carbimazole. If you are well and stable on carbimazole you can remain on it.

Monitoring hyperthyroid patients by specialists is expensive & doctors view hypothyroidism as easily treatable by GP. It is more efficient for hospitals to limit medication to 18 months but medically the risk of staying on antithyroid medication remains the same as when you started. It doesn’t accumulate with use. Carbimazole induced drop in white cells & liver issues is under 1%.

My specialist didn’t want me “on her books” so discharged me back to GP for monitoring and only once I agree to undergo RAI I can be re referred. (I have hyper nodule)

Many on this forum have continued issues after undergoing RAI.

Often doctors refute symptoms are of a consequence of treatment leaving them in limbo.

With either RAI or surgery option there are also the issues left by being hypothyroid. Many are under medicated as the TSH is discordant to actual thyroid levels. sometimes FT4 : FT3 conversion becomes poor also leaving them unwell.

To give a balanced view It’s logical that there are many who have had successful outcome with RAI & surgery and never had the need to visit forum for help.

If you are well remain on carbimazole & don’t be pressured into either irreversible treatment until you decide it’s best for you.

[pennyannie]

Hello again Milynda :

If I had an option in my treatment I would opt to stay on long term Anti Thyroid medication.

If your Graves antibodies are still over range and active here is little point coming off the AT medication anyway - as we have spoken before we are dealing with an auto immune disease that just happens to attack the thyroid, and possible the eyes.

There is no cure for this AI disease which is said to be stress and anxiety driven.

There is likely a genetic predisposition, probably a generation away from you, with someone with a thyroid health issue and read Graves can suddenly occur after a sudden shock to the system like a car accident or unexpected death of a loved one.

That makes sense for me as 4 months before my diagnosis I was physically threatened and verbally abused by a man I employed as my assistant manager.

However, medically, nothing much was explained to me, and I had RAI in 2005 not even knowing if there were options at my hospital and I became very unwell around 8 years later and that was when I started my own research into Graves Disease and the resultant primary hypothyroidism.

I have previously replied regarding your checking into the Elaine Moore Graves Disease Foundation website where you can read fully around Graves, the long term consequences of RAI and treatment options once your thyroid is removed surgically or burnt out in situ with RAI.

All that actually happens by thyroid removal/disablement is that you are switched from being a patient on a hospital O/P waiting list to a patient considered easily treated in primary care by your doctor.

Currently in primary care the doctor is only allowed to prescribe T4 - Levothyroxine and anti depressants and if this treatment doesn't restore your health you need a referral back to endocrinology for further consideration but there is no guarantee as to being prescribed full spectrum thyroid hormone replacement.

I now self medicate full spectrum thyroid hormone replacement and need to run my own blood tests as here again, doctors in primary care, seem very restricted on what they can actually do.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 and a measure of T4 : and If you have a thyroid hormone imbalance you will likely need both T3 and T4 thyroid hormone replacement, or NDT, to replicate what your own gland was supporting you with.

Just a couple of links you might like to look at :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

[Milynda in reply to pennyannie]

Just wondering if you have a medical background.

[pennyannie in reply to Milynda]

No - self taught and a bit of a Humpty Dumpty having stuck myself back together again after being left unwell and housebound by the NHS :

This is a patient to patient forum :

Details on my profile page if interested :

[Charlie-Farley in reply to Milynda]

It pays to do what pennyannie and many more of us have and are doing - being our own health advocates and getting more knowledgeable than our doctors. As it happens apparently doctors get about a days training on the thyroid when working towards their qualifications. Some (the odd one) may buck the trend, but much of the perceived wisdom from which they draw their knowledge is flawed, out of date and based on financial considerations rather than excellent clinical outcomes for patients.

If you click on my icon it will take you to my story - everyone’s is different, but the common thread is medical ignorance. Having a bit of a scientific background, I can see the shortcomings with regard to data interpretation- ie blood results, which is incredible considering they set so much store by them - patient ping pong. 😱