RAI failure... worse than previously.. advice please

[Loveteaandbiscuits]

Hi, pleased to find this forum as struggling knowing what to do next... I've had hyperthyroidism for 12 years, tested negative for graves twice, so likely TMG although consultants also think possibly graves?! Had a failed biopsy and been subclinical for a while... had RAI at the end of Jan. Now worse hyper than I've had for ages, including thyrotoxic myopathy which was so bad I couldn't get out of a chair. Really stressed about this- I'm 51 and usually fit and active. Currently trying to get back stable on carbimazole and propranolol and fed up!Consultant says to decide whether to do RAI a second time or opt for surgery. I don't fancy surgery but struggling to understand why RAI has failed and whether it'll work second time.... thank you in advance.

[Buddy195 Administrator]

Welcome to the forum Loveteaandbiscuits,

I’m glad you’ve reached out to us on the forum; we are a friendly & supportive group & are here to help.

So we can offer better advice, can you share blood test results (with ranges in brackets) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

What is your current dose of carbimazole and propranolol?

    pennyannie  PurpleNails  Fruitandnutcase and  Cavapoochonowner are members very knowledgeable about hyperthyroidism, & understand treatment options, so it may useful to look at their profiles and replies.

[pennyannie]

Hello Loveteaandbiscuits and welcome to the forum :

I'm so sorry to read of your experience.

RAI thyroid ablation is generally the first line treatment for Graves Disease - but this seems, may not be the cause of your ill health ?

It is known that RAI can trigger increased antibodies and make all the symptoms so much worse for some people.

I read the dose of RAI not that ' exacting ' but that eventually this toxic substance will totally burn out and fully disable your thyroid in situ - with you being reliant on taking thyroid hormone replacement for the rest of your life.

I had RAI thyroid ablation back in 2005 for Graves Disease and now manage Graves, thyroid eye disease - caused by the RAI - amongst other things, and now self medicate.

I deeply regret this treatment option and if you press the icon alongside my name this should take you to my experience and all I have read and written on this forum over the past 8 years which has helped me get back my life and hopefully helped a few other people along the way.

What is TMG - and you say possible Graves - have you had the antibodies read - as that surely gives you the answer ?

I believe these research papers are relevant - even though we do not know if Graves :-

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

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

If push comes to shove - I think a thyroidectomy the safest, cleanest treatment option if you are unable to stay on the AT drugs long term.

For all things Graves Disease and RAI thyroid ablation please dip into Elaine Moore's books and website - elaine-moore.com

[PurpleNails Administrator in reply to pennyannie]

Welcome to forum

Have you been on carbimazole 12 years?

What sort of dose level? Very low? Any breaks?

Which antibodies have been tested?

TrAb & TSI are unique to Graves.

TgAb & TPO are present in both autoimmune conditions, (Graves & Hashi) highest elevations in Hashi.

Dr tend to test TPO initially.

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies).

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies)

TSI (Thyroid-Stimulating Immunoglobulin)

Toxic nodule/s can be confirmed with uptake scan.

Were your FT4 & FT3 (thyroid hormones) above range? Because sub-clinical means your TSH (pituitary hormone) was / is low but not your thyroid hormones.

Doctors tend to focus on TSH.

RAI is repeated for 10% of patients, so the first treatment not resolving the hyper is a known possibility.

Most over two-thirds of those who have radioactive iodine treatment will develop hypothyroidism (an underactive thyroid). This can occur anytime from one month after the treatment and is most common within the first 12 months after treatment but can occur later.

If you are stable on carbimazole I would stay on medication for now. Thyroid levels can still lower after a year of treatment.

[pennyannie in reply to PurpleNails]

Good morning - think you got me - instead of O/P ?

[PurpleNails Administrator in reply to pennyannie]

I did, sorry.

[pennyannie in reply to PurpleNails]

No worries - just getting used to this new system via emails - Hey Ho !!

[Loveteaandbiscuits in reply to PurpleNails]

Thanks, negative Trab twice... however I have a diffuse goitre (so endo suspects graves) although also some distinct nodules - hence toxic multinodular goitre (TMG). Interested to know of anyone has had RAI twice... aware it can fail but shocked that its made me so unwell - not immediate thyroiditis but progressively unwell with serious muscle issues which I've never had...am now at 13 weeks post RAI.

Prior to RAI TSH 0.01 ish so subclinical, was this way with occasional blips for a long time. Fed up of palpitations and anxiety hence decided to go for RAI. Endos are confused, firstly were wondering if its a new spontaneous case of graves...!! obviously triggered by RAI imo. All my other bloods are good other than VitD a little low. Have really good GP and endo (altho she's leaving in June) so confident about all of that. Interested in the reference about RAI causing antibody flares if anyone has evidence? I work in muscoskeletal research so used to accessing academic libraries and haven't come across that.

Bloods again tomorrow (my GP does every 2 weeks) so fingers crossed this is transient...

[PurpleNails Administrator in reply to Loveteaandbiscuits]

“Prior to RAI TSH 0.01 ish so subclinical”

TSH - usually shown as <0.01 is undetectable. I’ve had undetectable for a decade. It doesn’t always mean your FT4 & FT3 are over range.

Clinical hyper = above range FT4 of FT3

Subclinical = below TSH (within range FT4 & FT3)

This is leaflet tends to be what hospitals hand out about RAI treatment.

btf-thyroid.org/treatment-o...

“For some patients who are treated with radioactive iodine to reduce the size of a goitre, there is also a small risk that they may develop Graves’ disease.”

So developing Graves is also a possibility.

Much of the research is based on RAI for Graves patients (so those who have existing antibodies). An increase in antibodies is well documented.

ncbi.nlm.nih.gov/pmc/articl...

Bloods tests every 2 weeks is very frequent. Most of us struggle to get tested the recommendations of 6 weekly. What is being tested? As TSH alone is insufficient. FT4 & FT3 are important.

You need to compare your pre & post FT4 & FT3 levels. Symptoms associated with hyper can occur with hypothyroidism too. TSH is not reliable to judge.

Obtain actual result with lab ranges. Doctors will tick off anything in range. You need optimal nutrient levels.

[Loveteaandbiscuits in reply to PurpleNails]

Thanks, yes I was full hyper originally but have been bouncing between sub clinical and hyper for 8 years and not taking carbimazole. I had an accident which revealed low bone density after dexa, realised even being sub clinical was impacting my body negatively and still had symptoms (palpitations) and have tried other avenues e.g. HRT without success. Hence decided to go for RAI.Usually my bloods would be 6 monthly ish but only bi weekly at the moment due to these post RAI issues. When the muscle issues started I and my GP thought I must be hypo... quite shocked to be back full hyper... endo doesn't think this is temporary...

Groan! Thanks for the replies

[Loveteaandbiscuits in reply to pennyannie]

Thank you have you got any references for "It is known that RAI can trigger increased antibodies and make all the symptoms so much worse for some people." Thank you

[pennyannie in reply to Loveteaandbiscuits]

I believe I read about this through Elaine Moore - probably her website as my books are likely out of date now :

though I think -   jimh111 - has a medical reference :

I know of 1 person who had RAI twice - it simply exacerbated everything - and she developed further issues with her eyes :

RAI is a toxic substance known to be taken up - to a lesser extent by other glands and organs within the body and personally believe it should not be offered in what is perceived as a health care setting.

[jimh111 in reply to pennyannie]

This is not a subject I have studied but I have seen lots of advice from various thyroid organisations and talks that say RAI should not be used in Graves' eye disease. This is because it releases lots of tiny fragments from the thyroid that stimulate autoimmunity.

I've found this study ncbi.nlm.nih.gov/pmc/articl... . I haven't read it but it looks decent.

[pennyannie in reply to jimh111]

Thank you :