Survey: Just wondering how many people had... - Thyroid UK

Thyroid UK
105,804 members122,656 posts



Just wondering how many people had radioactive iodine following thyroidectomy for thyroid cancer and then went on to develop fibromyalgia and / or autoimmune disease.

17 Replies

I had RAI after having Graves. Within nine months I became hypo and very sick and have been since 2015. They tell me I have chronic fatigue syndrome.

in reply to cazmania7

Chronic fatigue is a symptom not a dx. You need to find out why you have it. They told me that 5 years ago. I now have a dx of autoimmune disease and neuropathy.

in reply to Scrumbler

I am hoping I just lack T3! Time will tell!

in reply to cazmania7

Hope you feel better soon 😊

in reply to Scrumbler

Thanks scrumbler 🙏🏻

I had RAI for Graves but already had multiple autoimmune syndrome so can't blame the RAI for causing it.

in reply to bantam12

That’s interesting Bantam. So neither can you blame hypothyroidism.

Hope you’re staying as well as you can.

I think it’s very possible that some people who had RAI actually had Hashimoto’s rather than Graves. Let’s face it, we know that many so-called endocrinologists don’t know nearly enough about thyroid conditions and we’ve certainly seen here, on numerous occasions, people being told by their doctor that they had Graves when the antibody results clearly showed that they had Hashi’s.

But that’s an aside really.

Dr Lowe, RIP, believed there wasn’t any such thing as chronic fatigue/ME/fibromyalgia—that in fact it was nearly always the result of low T3 levels. And people who’ve had their thyroids removed seem especially susceptible to having low T3 (not surprising really given a thyroid usually makes approx 20% T3).

in reply to Jazzw

I’m a great admirer of Dr Lowe. However, his hypotheses didn’t extend to autoimmune disease. My thyroid levels are optimal on NDT thanks to members of this forum.

in reply to Scrumbler

Though he does discuss autoimmunity quite extensively - for example in this paper:

Inadequate Thyroid Hormone Regulation as the Main Mechanism of Fibromyalgia: A Review of the Evidence

John C. Lowe †) and Jackie Yellin‡


Fibromyalgia is often linked to low FT3

Obviously someone on Levothyroxine mono therapy after thyroidectomy or RAI is likely to gave low FT3

Especially if dose of Levothyroxine is inadequate or vitamins not optimal

Hey there Scrumbler

RAI is a toxic substance that slowly burns out the thyroid, in situ.

RAI is known to be taken up, in smaller amounts by other glands and organs within the body, including the breast tissue, genitals, pancreas and the gastric mucosa.

RAI can " trash " your immune system.

RAI can also " trash " your vitamins and minerals.

Hypothyroidism caused by RAI is known to be more difficult to treat.

Hypothyroidism caused by RAI is known to cause depression and anxiety.

RAI is known to trigger fibromyalgia type symptoms.

Should you have symptoms of thyroid eye disease RAI will make this issue worse.

I am with Graves Disease diagnosed in 2003 and given RAI treatment in 2005.

I have been very unwell these past 6 years - I have been self medicating with Natural Desiccated Thyroid this past year and am much improved.

The details below were published in the Thyroid uk Harmony issue XXVI 2019:

in reply to pennyannie

And RAI may well not cause any of the issues you mention.


Fibromyalgia was only 'given a name' as far as I'm aware after blood tests were introduced to diagnose hypothyroidism along with levothyroxine (T4 hormone).

As you have no thyroid gland whatsoever - and am not medically qualified - it would be much more holistic to give you a trial of T3/T4 in a one to 3 or one to 4 combination.

It is also due to the reliance upon the TSH result (thyroid stimulating hormone - and it is from the pituitary gland) alone.

One of Thyroiduk's Advisers - an expert in Fibromyalgia stated that it was due to 'thyroid hormone resistance' and that the patient could recover with T3 (liothyronine) rather than T4 (levothyroxine). He also stated that the patient needed a larger dose of T3 than other patients.

I, myself, am very unwell and symptomatic on levothyroxine, improved on a T3/T4 dose but recovered my health on T3 alone.

T3 is an Active Hormone and is needed in our millions of T3 receptor cells. T4 is inactive and has to convert to T3.

The problem with the 'modern method' of diagnosing problems with the thyroid gland is that it all relies upon a blood test result with complete ignorance of clinical symptoms.

If you're in the UK, T3 was withdrawn from being prescribed due to the cost and many became very symptomatic again or had to source their own.

I’m optimal on NDT Shaws. Couldn’t tolerate Levo and it didn’t convert. Oncologist has written to my GP to ask him to prescribe T3 only if I’d like to change. . Of course GP has to comply as it’s a Consultant directive and is happy to do so. However, as my bloods are good and I’m having other meds introduced, we’ve decided to wait a while.

My Fibro dx has been withdrawn. I was misdiagnosed. Current dx is small fibre neuropathy related to Sjorgens autoimmune disease.

This is very interesting I had Graves on carbinazole decided to have then 33years ago a partial thyroidectomy but I had the op put off for 10 weeks in a row due to recurring chest infections I was taken off carbinazole was told this drug could be stopping my infection clearing On the Friday they decided my chest was clear and bough to do the op. Was taken in and given RAI before my op to settle my thyroid I was told there was no available information like this I trusted they knew what they were doing Well was I naive jump forward fa couple of years I was diagnosed with chronic fatigue syndrome I then couple of years later had hyperprolactenemia now during this time I was off and on levo varies mg I then noticed my knuckles were darkening this was approx 10years ago no one could help with this it looks so dirty now I have been diagnosed with my adrenals' not producing any cortisone as I developed secondary addisons as I have COPD and have osteoporosis initially it was blamed on prednisone but the consultant who did tell me it was addisons causing my knuckles and now my gums and lips to go black did a timeline type thing and we discovered that the chronic fatigue syndrome and other symptoms way back were indeed most likely being caused by my adrenals as far back as 33 yrs ago I don’t wish this for anyone but has anyone else had adrenals checked to rule them out they affect so much in our body and has to be monitored very carefully Keep well everyone xx

Dear Carol. I know my cortisol is very low. Fortunately I haven’t got Addisons. Hyper pigmentation (skin darkening) especially in folds and creases, is a definitive symptom.

Stay well and thank you for sharing your story.

You may also like...