Fascinating Graves’ Antibodies Study: This is a... - Thyroid UK

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Fascinating Graves’ Antibodies Study

jimh111 profile image
9 Replies

This is a remarkable study eje.bioscientifica.com/view... . A couple of caveats. 1. I fortunately have no experience of Graves’. 2. I have not looked for similar studies that may report different results.

The study is excellent in that patients were randomly assigned to treatment with antithyroid drugs, radioiodine ablation (RAI) or surgery. I was a bit shocked at this, if I were a patient, I would want a choice. It makes for good science if not ethics.

The study found that TSH receptor antibodies (TRAb) were substantially reduced, close to normal levels, after 18 months in patients receiving drug therapy or surgery. Conversely, RAI worsened TRAb levels for one year and they remained elevated after five years. The results may have been biased to a small extent by having to exclude a few patients who did not respond adequately to drug therapy or surgery.

I think my preference would be for drug therapy and if it did not work surgery. Surgery carries risks but interestingly they used subtotal thyroidectomy in this study which is presumably safer than a total thyroidectomy.

Most of the study patients were able to stop medication after 18 months. i.e. no levothyroxine! From this study and patient reports it seems that RAI should be the last choice and reserved for those who are not suitable for surgery (and for thyroid cancer patients).

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9 Replies
SlowDragon profile image
SlowDragonAdministrator

Read somewhere that RAI is the cheapest option. Might explain why it’s promoted

jimh111 profile image
jimh111 in reply to SlowDragon

and in truth the most expensive. Down to the current structure where each department looks at their own budget and ignores total cost (in money let alone life).

SlowDragon profile image
SlowDragonAdministrator

Here’s cost analysis

eje.bioscientifica.com/down...

jimh111 profile image
jimh111 in reply to SlowDragon

Bit too complicated to understand at first glance. One has to ask the question why are they doing a total thyroidectomy when other countries do a partial which will have lower risk and complications.

tattybogle profile image
tattybogle

so this has been known since 2008 ?, and yet RAI is still encouraged as the most cost effective option..........naughty.

I wonder if informed consent means properly informed ?, i hope so.

Do they even tell people that RAI = radiation, or is it like 'Botox' where most people haven't twigged that they are paying to have Botulism injected into them.

You wouldn't catch me eating anything radioactive unless it was a last resort.

I'm not surprised the immune system doesn't like it.

nightingale-56 profile image
nightingale-56

Thanks for posting this jimh111 . This information would have been very useful when new Guidelines were being scoped. New patients really do need to have all the information before they make a considered decision about treatment. I did not have an option as mine went quickly (after Carbimazole treatment) while I was 3 months pregnant, so could not have RAI. Thank goodness!

jimh111 profile image
jimh111

A note following nightingale-56 comment.

Graves' antibodies cross the placenta and can cause hyperthyroidism in the developing baby. Since RAI leads to higher TRAb for longer it's not a good option for anyone considering the possibility of pregnancy in the next few years.

Valarian profile image
Valarian

I've seen this before (and think I may have posted it), It certainly fits in with the well-known risk of worsening TED following RAI.

Thyroidectomy can have short and long-term effects on the vocal chords and parathyroids, so sadly, it's a question of the 'least worst' option for personal circumstances.

btf-thyroid.org/thyroid-sur...

The long-term success rate of achieving remission with anti-thyroids alone is somewhere around 50% after two years, with still more relapsing over their lifetimes, so although I agree that the random allocation seems somewhat brutal (as this was for a trial, one assumes some kind of informed consent would have been necessary?) many of those involved would eventually have had to make the choice anyway. However, it is worth remembering that both RAI and thyroidectomy groups will have been randomly allocated some patients who would have achieved at least temporary remission on antithyroids, and under current UK clinical practice (and instinctive patient preference), not have required invasive treatment at this point, and potentially have been less likely to experience further problems with any of the three options.

In the UK, in theory at least, all three options are available, but anecdotally we know from this forum that some people, particularly those who aren't in areas with endocrinology departments taking an active interest in thyroid conditions, may not be properly informed of all their options, and may feel bullied into RAI.

The NICE CKS recommends that thyroidectomies should ideally be performed by high volume surgeons, which may add another barrier to this option for patients living in areas with few choices of hospital etc.

cks.nice.org.uk/hyperthyroi...

The NHS info suggests that total thyroidectomy would normally be preferred to partial (to prevent recurrence of Graves') but ultimately this may depend on a balance of risks/potential impact to (eg) parathyroids and laryngeal nerves. Obviously, if the whole thyroid has been removed, it will not be possible to discontinue levothyroxine, and if thyroid tissue remains, Graves' may still recur necessitating RAI or possibly a second operation. I know someone who had RAI some time after a partial thyroidectomy, and she says the RAI was no trouble at all, and now wishes she'd gone for that from the outset - ain't hindsight a wonderful thing ! (and of course, a single dose of RAI may also have been unsuccessful).

nhs.uk/conditions/overactiv...

What did strike me when reading this article was how much there remains to learn about Graves', even pushing two hundred years after Dr Robert Graves first described the condition. So much time is spent talking about treatments which only address symptoms, and so little on treating root causes.

jimh111 profile image
jimh111

It does seem that a partial thyroidectomy should carry much less risk than a total, just stay away from the difficult bits.

Good advice to use an experienced surgeon but they all have to start sometime. I suspect the less informed and less wealthy patients get the learners. Having fewer surgeons doing thyroidectomy will increase the average level of experience.

The study suggests that partial thyroidectomy has a low relapse rate. I think the recommendation for total thyroidectomy is to eliminate the occasional repeat operation. In this case RAI could be used on remnant tissue with lower doses.

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