BTF RAI Study

[jimh111]

This study sponsored by the BTF looks like it will ve very useful btf-thyroid.org/news/2023-b... . A lot of thyroid research is fairly useless so it's good to see a study that will be useful whatever way the result goes.

[SlowDragon Administrator]

Seems a very small number of patients in the research and not anywhere near long enough time

A 2019 study by Dr Torring and colleagues observed that patients who received radioiodine therapy for GD have a worse quality of life 6 to 10 years later, compared with people treated with thyroidectomy surgery. The reasons for this are not obvious.

Understandably, this study and other reports have raised concerns among some patients and have put them off having radioiodine treatment. While one of the causes of having worse quality of life following radioiodine therapy could be under-replacement with levothyroxine, researchers have not yet investigated the effects of the radiation damaging the thyroid and producing inflammation, which is reflected partly by persisting thyroid autoantibodies in the blood.

We will recruit 20 patients treated with radioiodine therapy and 10 with thyroid surgery. We will use blood tests, two sets of quality-of-life questionnaires and thyroid PET scans to study the relationship between thyroid inflammation and quality of life. We will test blood for thyroid autoantibodies, blood markers of inflammation and measure the small proteins involved in inflammation and immune processes (cytokines).

Participants will visit us three times in total; at the start (baseline), at six months and at 12 months. Ten of the 20 patients treated with RAI will have PET scans at baseline and at 12 months.

[jimh111 in reply to SlowDragon]

I like it because it has a clear objective. I guess it is a small study because the budget is comparatively small. I hadn't realised RAI could release fragments into the blood.RAI destroys the thyroid because the radioactive iodine concentrates in the thyroid. However, T3 binds onto receptors than bind to DNA. Although there will be very low concentrations of radioactive iodine in the rest of the body it will be very close to the DNA, molecular distances. Given the inverse square law I've wondered if some peripheral tissues get damaged. In general this may not matter as cells repair and regenerate. This would not happen in the brain as brain cells don't recover. So, hypothetically RAI might damage a small number of brain cells and this might explain why some people do badly after RAI. This is wild speculation on my part, I'm not able to do any quantitative analysis. This study should give us an idea of how important inflammation is.

[helvella Administrator]

If it is already known:

Healthcare professionals and researchers recognise that radioiodine therapy can cause thyroid antibodies to rise and TSH-receptor antibodies to worsen in up to 73% of treated patients. This is in contrast to patients treated with antithyroid medication or surgery whose thyroid antibody levels gradually decline and disappear over time.

Then, is it actually ethical for the study to allow 20 more patients to receive radioactive iodine treatment - rather than antithyroid medication/surgery?

Effectively, around 15 out of the 20 will have raised thyroid antibodies and TSH antibodies will worsen.

And all they'll find out is whether the ones who have the worst quality of life are the ones with these antibody differences. If that correlation isn't effectively perfect, will they actually find out anything?

If those 20 had antithyroid medication/surgery, then 15 fewer people would have these antibody issues.

(Yes - I know it is hypersimplification and possibly somewhat unfair. But the ethical question is what jumps out rather than any possible scientific outcome.)

[SlowDragon Administrator in reply to helvella]

And only study them for a year…..and then abandon them

[helvella Administrator in reply to SlowDragon]

And isn't another of the issues the damage to other organs (such as salivary glands)?

Plus, if the allocation to the two groups isn't random, the results will be skewed. And with such small numbers, that will be difficult. Especially as, if provided with full information (starting with what was on the link) prior to consent, just how many would agree to radioactive iodine? I wouldn't.

[jimh111 in reply to helvella]

The current situation is that a great number of patients receive RAI at the moment. This study will contribute to finding out if the inflammation contributes to worse outcomes.As a general point I think we are too conservative when it comes to carrying out studies, I think vastly more lives are lost because we chicken out of vital studies because we fail to accept risks.

From a personal viewpoint if I had hyperthyroidism which didn't respond to drugs I would choose surgery followed by low dose RAI if necessary. Of course RAI will be needed for people who cannot have surgery due to age or other reasons.

[helvella Administrator in reply to jimh111]

Happy to accept some will need RAI and have no option. And agree with you about personal choice.

But if all thirty patients in the cohort can be randomly assigned, that would mean none actually must have RAI. And if that isn't the case, the selection cannot be random.

[jimh111 in reply to helvella]

Logical but very large numbers have RAI and it isn't going to change soon.As an aside we are always told to choose a surgeon who has done many thyroid operations. Always wondered how they go from zero to X where X is large.

[helvella Administrator in reply to jimh111]

Yes - it does sound ridiculous.

But I think they go from zero to being second/assistant for a number operations, then more doing the main surgery but with oversight and support, before doing their first on their own/in charge.

And then keep on doing with them regularly.

[jgelliss in reply to helvella]

Helvella I too had TT many years ago followed by RAI. As far as I know it was low dose and one round. The reason was to make sure that no tissue was left. Does that set someone up for unforseen problems down the line? I would be very interested. Back then I just did what my surgeon wanted. I didn't know better. Thank you for sharing your information with us.

[jimh111 in reply to jgelliss]

I don't know but my best guess is that the problems are linked to the dose. If the cause is inflammation then the small amount of residual tissue will mean there is less tissue to cause inflammation. If the problem is with the RAI damaging tissue then you have a much lower dose. Not scientific, just a couple of propositions.

[jgelliss in reply to jimh111]

Thank you. It's just worrisome that we put all of our trust in the Dr's/surgeons not knowing that what we thought was for our benefit may just be in reverse. That's where knowledge is power comes in. In addition I often thought that for some reason some of us may have been lab rat's.

[pennyannie in reply to jgelliss]

What I found most disconcerting is that there was no acknowledgement of my situation by mainstream medical and they all seemed to distance themselves from me.

Looking back the RAI and TED leaflets given me in 2004 at my very first endo appointment were totally biased, lacking on any negatives or actual real risks.

Maybe the BFT didn't know at the time - so why not say so - or print nothing -

though all the risks, apart I think from the 25 year window for risk of small bowel and or breast cancer are mentioned in Elaine's Moore's first book published in 2001.

Talk about delay, denial, and discrimination on age and sex -

I just wanted to be out of the pain, answers as to ' why ' and reassurance from someone that there's nothing else to come - maybe they still do not know -

I guess it's a numbers game - and some fall through the cracks - but overall it's quick and the most cost effective option - I guess if your diagnosis is cancer and your looking at life ending situations it's a very different headset - but for an AI disease where there are other safer options - if you care - how can you actively promote and encourage patients to take RAI ?

[jimh111 in reply to pennyannie]

I agree, there has been a lack of caution with RAI. There are risks with surgery and RAI but they have allowed convenience to override their duty of care.The BTF does some great work but they are subservient to the BTA and so not a patient voice. This is why everyone should join Thyroid UK. So we have a bigger voice, not just use the forum, join Thyroid UK.

[pennyannie in reply to jimh111]

Yes - with Graves it is a poorly understood and badly treated AI disease and treatment options - if your lucky enough to be given them - do leave you between a rock and a hard place - and why if the AT medication is tolerated - this has to be the best option for the patient - though more expensive on a cost per head for the hospital and very much dependant on the skill set and knowledge within the hospital endocrinology team.

In my limited experience - I never saw the same endo twice - but for one - and he explained that they were all on rotation and only stay in any department for a couple of months - so it seems to me continuity of care is also an issue for patients looking for considered opinion.

[pennyannie in reply to jimh111]

Just summoned up some courage to view BTA leaflets on line and they need updating if I'm not to think this organisation disingenuous :

[jimh111 in reply to pennyannie]

I don't agree with a lot of what they say but this study will be useful.

[jgelliss in reply to pennyannie]

Pennyannie I feel your pain and concern . I couldn't agree with you more. I feel that Medical Academia is really failing us. It all boils down to monetary gains. We became as patients cash cows for them. Just pray it gets better not worse.

[Beads in reply to helvella]

I think they’re recruiting from already treated patient rather than treating fresh ones. If QoL is still reduced after 6-10 years then studying them for 12 months post treatment isn’t going to be helpful. Studying patients treated 6+ years ago might be.

[helvella Administrator in reply to Beads]

It refers to starting the study with a visit at baseline. But it doesn't seem clear whether that is before or just after "definitive" treatment.

[Milkyway88 in reply to helvella]

I have probably misinterpreted this, but are they recruiting patients who’ve previously had RAI or actually starting from scratch and subjecting 20 people to RAI in the name of research? If it’s the latter, then I’m shocked.

I agree with others, it’s a tiny sample and all from one area. I’d have thought a more longitudinal study would be useful, ie a few recently post RAI up to decades later. Would surely give a better overview in that the older patients will have more experience of long term quality of life.

[jimh111 in reply to Milkyway88]

The description implies they will have already been treated. It would be better to have a random sample but there would be ethical issues. Linking inflammation to symptoms will overcome sone of the problems with it not being randomised.

[pennyannie]

As someone dealing with the long term issues of having been treated with RAI and given no treatment option though very well on the AT drug - but told it was too dangerous a drug to stay on long term -

My eyes were effected round a year post RAI in 2005 and I developed TED.

Around 8 years post RAI in around 2014/5 my saliva started to reduce so presume this was when ' these fragments ' were circulating in my blood - over 2 years and at the insistence of my dentist I was referred for Sjogren's - though shocked by what she saw - the oral surgeon couldn't diagnose me - but it was not Sjogren's.

Low ferritin resulted in a colonoscopy and endoscopy - though I couldn't swallow the scope - entry gained the other end and to my shock and horror the same excruciating pain I had been living with during waking hours for 18 months that was in my mouth - was also in my back passage - I fainted waking up attached to several machines and a man intent on finishing what he had started.

Given ' all clear " and a barium meal suggested which I declined - explaining again - I had no saliva - with which to swallow anything at any given time - as explained previously- when I asked to be sedated.

Saliva started to reappear after around 2 years - lost around 12 teeth due to having no saliva and had a bridge fitted privately for my front bottom set of teeth as the NHS plate jumped out if I dare speak to anybody longer than 5 minutes.

I can't taste much and with several missing teeth and those left ' suspect ' and I can't afford the cost entailed putting myself back together again.

2015 onwards - found Elaine Moore's first book and website - found this forum - and brain fog hindered my understanding but I knew I had to come out the system to try get better.

I need my pension to support my self medication of full spectrum thyroid hormone replacement as I was refused any treatment options on the NHS in 2018.

I would like to know from the very first research paper -

What treatment options were these original patients prescribed ?

Were they dosed on just a TSH reading seen in isolation as are the majority of patients who go through this quick fix perceived solution to a long term health issue ?

Sorry for the ramble - more on my bio - think I'm with some sort of PTSD from all encountered since being so unwell post RAI thyroid ablation and finding no support where I believed there was a health care system.

P.S. I fully accept my situation pretty extreme and considering I went to the doctor in 2004 for insomnia and then diagnosed Graves - maybe I'm just one of the ' unlucky ones ' who suffered so much more post RAI - and collateral damage - but all my symptoms are listed in Elaine Moore's first book - Graves Disease - A Practical Guide - 2001 - so I know it is real and the research already in print -

I also know now I have been dealing symptoms of hypothyroidism from a child and never ' picked up ' and despatched with anti depressants the few times I visited the doctor.

As for this ' new study ' it seems to me - too little too soon - and just a token line in response to existing unfavourable research.

[pennyannie in reply to pennyannie]

Diagnosed Graves in 2004 age 57 - - RAI the following year : - no paperwork on same :

2006 discharged from hospital - requested to stay longer than suggested as was without a permanent address nor doctor until 2006.

Discharge letter June 2006 gives me a TSH at 0.014 with a T3 at 5.80 ( range 4.00 - 6.80 ) with a T4 at 24 (range 11 - 24.00 ) - I was ok - 100 mcg T4 - still working and enjoying my life.

2009-17 my TSH readings range from 0.01 through to 12.50 - no T3 nor T4 readings - dosed on T4 monotherapy 100/125 mcg. T4 and felt better on the higher dose.

When I reached 65 years of age in 2012 - this was reduced to 100 mcg T4 - no discussion - because of my TSH being suppressed at 0.01.and I think the start of my decline.

In May 2017 I had to pay to have my T3 and T4 run by the NHS hospital laboratory - £34.00 :

On 100 mcg T4 - TSH 0.57 - T3 - 4.00 ( 3.10 - 6.80 ) T4 20.50 ( 12 .00 - 22.00 )

According to the NHS this last result is perfectly fine and I was told I was very lucky to have any T3 at all - and my health issues not thyroid related and I was referred to as a conundrum.

July 2017 managed an increase back to 125mcg resulting in a T3 @5.50 and a T4 @ 22 felt like my old self again - referred to NHS endocrinologist who told me in 2018 I was overmedicated and needed to reduce down my T4 and refused me both T3 and NDT because of my suppressed TSH.

RAI is a slow burn - but ultimately most people by 10 years post RAI will have no thyroid function and do much better on a full spectrum thyroid hormone replacement if they can manage to get to read, understand and do the necessary ground work for themselves.

Hope that gives a time line and some unemotional perspective :

I couldn't understand why I experienced such awful symptoms some years later as presumed such symptoms occurred straight after the RAI treatment - so checked with Elaine Moore and she confirmed that I wasn't a conundrum nor the only person who had experienced such symptoms after such a time lag after ingesting this toxic substance.

She did also mention that in the States there is now more of a ' move away from RAI thyroid ablation ' !!

P.S. It seems ' we had tried ' HRT and T3 in 2007 for the exhaustion - all within a month - no blood tests before or aft ' - and I do remember having to buy the pill cutter and chopping a little tablet in 2s or 4s - but it had no effect - though in 2007 I wasn't with a low T3 and doing ok anyway.

[jimh111 in reply to pennyannie]

Sorry for what is a dreadful situation. Whilst there are risks with surgery such as loss of voice I suspect the teal reason for RAI is a shortage of skilled surgeons (or would be if RAI wasn't so common). It seems they have considered surgery risks, perhaps because they can't be ignored but have avoided looking at RAI risks.I'm very much in favour of gaining knowledge and this study will I think be very useful. If inflammation is shown to play a role the study will help reduce the number of RAI treatments. It would also be a step towards treatment for these symptoms and possibly vaccines in the loner term.

I'm certainly not in favour of RAI but I do see this as a welcome study.

[pennyannie in reply to jimh111]

I agree we need some research but the time scale it's very limited and considering the research we already have I don't see it's value.

I would have thought the money better spent continuing the research for a Graves vaccine as detailed on the BTF website - Project Daviad.

[jimh111 in reply to pennyannie]

The small amount of money wouldn't go far in vaccine research. Besides if inflammation does cause the symptoms it will lead to a treatment for those who already have Graves'.

[pennyannie in reply to jimh111]

I think the real reason for RAI is that it is the most cost effective treatment option for the hospital - and as you say - there is a very large number of people having RAI :

I do not believe it has anything to do with patient health and well being and why it is not even offered as a treatment option in some countries in the World

[jgelliss in reply to pennyannie]

Pennyannie Strength and Blessing for you. I read where patients had high doses of RAI and a few rounds had lost some teeth because of the dry mouth they experienced with the RAI.Best wishes.

[helvella Administrator]

The last sentence of the Conclusion of this paper (at least, in the form of the Abstract) is:

Future research should validate reported differences in quality of life between these 2 treatment modalities.

Total thyroidectomy is more cost-effective than radioactive iodine as an alternative to antithyroid medication for Graves' disease.

Abstract only - full paper behind paywall:

europepmc.org/article/MED/3...

[pennyannie in reply to helvella]

I'm getting confused - this paper is talking about Quality adjusted Life years - any idea what this means please ?

[helvella Administrator in reply to pennyannie]

More or less points on a questionnaire.

Quality of life (healthcare)

In general, quality of life (QoL or QOL) is the perceived quality of an individual's daily life, that is, an assessment of their well-being or lack thereof. This includes all emotional, social and physical aspects of the individual's life. In health care, health-related quality of life (HRQoL) is an assessment of how the individual's well-being may be affected over time by a disease, disability or disorder.

en.wikipedia.org/wiki/Quali...

Enjoy working your way through the contradictions and inconsistencies.

If you already have a health issue such that your QoL before/without Graves was, say 75%, then the enhancement of QoL due to successfully treating Graves will never be as great as for someone who other than Graves has a QoL of 100%.

Hence it devalues treatments for those with existing conditions. Whereas some of us might look at someone who is already suffering as an urgent case - they shouldn't have to suffer Graves on top of an existing condition any longer than can be avoided.

[pennyannie in reply to helvella]

Thanks for that - not sure ' enjoy ' is the right word - I'll have a go but -

if the sun comes out today and burns off the dew I think I'd prefer to mow my lawns :

[pennyannie in reply to pennyannie]

I now know I was dealing with hypothyroidism from a child so my assessment of any QOL will be non optimal health from the outset.

It is evident that this treatment has left me much further compromised in overall health and well being now being primary hypothyroid with no thyroid function and with the added bonus of TED and no sense of taste.

I 'm not as resilient as I once was and like that old Teddy bear who needs to be re-stuffed but filled cynicism, distrust and some form of PTSD

but somewhat improved - self medicating with Natural Desiccated Thyroid.

[pennyannie]

NIKEGIRL

[pennyannie]

Forestgarden

[pennyannie]

 tattybogle - as promised -

I'm now going over to listen to a Thyroid uk ' live ' video on ' The Implications of Stress ' !!

xx