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Thyroidectomy and Patient response

diogenes profile image
diogenesRemembering
22 Replies

This commentary in Clinical Thyroidology reviews a study which indicated that thyroidectomy is better than "adequate" T4 replacement in Hashimoto's, improving issues like fatigue etc. The authors do not understand but the answer is clear. In Hashimoto's with remaining active thyroid tissue, the situation is unstable. but T3 will be continued to be made from the remaining thyroid tissue at the expense of T4. Dosing with T4 to attain a "satisfactory - ie defined as "within range" TSH(!!!) will be difficult in such situations.. If thyroidectomy is done, then the thyroid T3 source is lost and there will therefore be much less uncertainty about dosing, as there is no interaction with any active thyroid tissue. Of course they don't know that and have not caught up.

Clinical ThyroidologyVol. 31, No. 5

HypothyroidismFree AccessThyroidectomy Improves Quality of Life and Fatigue in Patients with Hashimoto's Disease and Persistent Symptoms Compared to Adequate Thyroid Hormone Replacement

Trevor E. Angell

Published Online:8 May 2019doi.org/10.1089/ct.2019;31....

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diogenes profile image
diogenes
Remembering
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22 Replies
helvella profile image
helvellaAdministratorThyroid UK

From the paper's conclusion:

Autoimmune thyroid disease is a very common condition, and a vast number of people may be potential candidates for surgical treatment. Is this too drastic an intervention for this common condition?

The argument balancing how drastic the intervention against prevalence seems entirely wrong.

Yes - cost is an issue. It always is.

Yes - resources (such as surgeons, theatre time, hospital beds) are likely issues.

But the implication that because it is common it might be too drastic fails (to my mind) in basic logic.

The real question is whether the individual patient would be better served by an operation or by other treatment. Then cost and resources become questions that need to be answered.

pennyannie profile image
pennyannie

It is completely alarming that this is even deemed worthy of consideration -

but to follow this pattern of thought -

why not give them all RAI thyroid ablation, it's far cheaper and has the same end goal ?

PurpleNails profile image
PurpleNailsAdministrator in reply to pennyannie

Could you imagine…. They would run out of the substance!

pennyannie profile image
pennyannie in reply to PurpleNails

B----y good job too !!!

I did read that in the States it is not as encouraged, or as widely used, as it once was.

I'm not aware of any public acknowledgement as to the consequences of ingesting this toxic substance though presume it wouldn't make good reading and likely lead to litigation.

But surely they'd still need "adequate" (why not "optimal"?) thyroid hormone replacement after thyroidectomy and we know that doctors are pretty useless at that. If they don't think that thyroid hormone replacement is necessary afterwards, let's just remove the authors' thyroids and see how they feel. Why is T3 such a hard concept to understand?

Hedgeree profile image
Hedgeree in reply to Angel_of_the_North

This is something that is very currently relevant for myself.

I'm due to have a partial thyroidectomy in September (half being removed due to a nodule with suspicious follicular cells) The ENT surgeon said I MAY need hormones afterwards? I find this confusing.

I thought that levo may be prescribed automatically though but it seems that's not the case. My FT4 is still below range (9) Not sure what will happen to my levels post thyroidectomy? Maybe they want me to get even sicker before they prescribe hormones?

My list of questions for the ENT surgeon is getting longer...

humanbean profile image
humanbean in reply to Hedgeree

Good luck with your doctor and surgeon following the surgery. It sounds like you might need it.

Hedgeree profile image
Hedgeree in reply to humanbean

Yes thanks humanbean 😊

bookish profile image
bookish in reply to Hedgeree

I had a partial 11 years ago for a benign colloid nodule and have still been unable to get any treatment. Admittedly we have no idea what my FT4 was doing pre-op as no-one checked! It isn't below range, even now, just perilously close, whereas FT3 is below. I keep trying. I would say, as you'll already know, that getting everything else as close to optimal as possible will help. The surgery itself was fine and recovery ok but I wish I'd asked more questions, so good for you. Best wishes.

Hedgeree profile image
Hedgeree in reply to bookish

Thanks Bookish for outlining your experience. It's helpful to know.

Many thanks.

bookish profile image
bookish in reply to Hedgeree

Forgive me for being nosy and looking at your profile! Couldn't help but see your comment about never having high TSH and wondering about being classed as subclinical, but you clearly know about central/secondary and as you mention pituitary issues and have PA that seems likely. Perhaps the below range FT4 was enough to get it flagged. Dr Chandy says that low B12 can affect the myelin pituitary membrane and lead to poor signalling - sometimes hyper, more commonly hypo. I asked him for more details and he said that once hormone levels were so low I'd need an endo as well as proper B12 treatment. I suppose if it were picked up more quickly the damage might be reversible. Incidentally hyperpigmentation is a B12D sign, slightly more common it seems than vitiligo (which I have) - ncbi.nlm.nih.gov/pmc/articl...

Best wishes

Hedgeree profile image
Hedgeree in reply to bookish

Hi bookish,

No problem having a nosy at my profile 😊 I now cannot imagine life before 'ThyroidUK....I'm learning a lot from the knowledge of those on this forum.

I also have vitiligo but only on my abdomen/navel. I'll have a look at that link.

Thanks again.

bookish profile image
bookish in reply to Hedgeree

You are so right. Not sure quite what kind of mess I'd be now without all these wonderful, generous people. This forum and others have made a world of difference to my health and sanity.Interesting that you have hyper and hypo pigmentation. I only have mild vitiligo and it slowed right down when I went gluten free. Not reversing, but not increasing. Dad has hyperpigmentation. This one is interesting too, re vitiligo/hypothalamus heraldopenaccess.us/openacc.... It mentions upregulated IL6 cytokines and I know I am genetically predisposed to higher IL6. Cheers

bantam12 profile image
bantam12 in reply to Hedgeree

I had a partial thyroidectomy in my teens and didn’t need any Levo/treatment afterwards, I was euthyroid for 30 years and then went hyper again. So it’s perfectly possible to be absolutely fine after partial op.

Hedgeree profile image
Hedgeree in reply to bantam12

That's good to know bantam12.

tattybogle profile image
tattybogle in reply to Angel_of_the_North

" If they don't think that thyroid hormone replacement is necessary afterwards....."I don't think that is what they are suggesting here .. it just say's that whilst continuing to taking levo afterwards there was a significant improvement in fatigue (and rapidly lowered antibodies) in those whose thyroid was completely removed , over those who kept their thyroid .

Hedgeree profile image
Hedgeree

Thanks for posting this diogenes.

tattybogle profile image
tattybogle

"The authors do not understand ...."

i've read this research before , and it intrigued me and troubled me in equal measure .. maybe this 'lack of understanding' is why i found the results so troubling.

I don't know what to make of it .

I am comparing myself to this study to some degree, my antibodies were >3000.. i had chronic fatigue on adequate dose levo , and i had the same significant reduction in antibodies (without thyroidectomy but after 13yrs on levo , they were only 195).

The idea that i may have fared better with a thyroidectomy is 'challenging/provocative' .... i'm struggling to accept it could be true given what i read on the forum from members who've had one .. i do accept that people on here are not a representative sample of thyroid patients as a whole, but this study specifically looked at patients who remained symptomatic, so the people on the forum ought to be quite a good 'match' as a subject group.

The improvements in symptoms and antibodies noted in this study do seem very big. I don't think i felt any improvements in symptoms with lower antibodies , but i cant be really objective about that due the amount of 'life that has passed under the bridge' since they were >3000

I wonder how many of the "HT symptoms severe enough to consider thyroidectomy" were related to Goitres ? ... ( i didn't have one, but was symptomatic enough with fatigue that i would have considered surgery if i'd been told it would help )

I wonder what proportion of non study patients have such high levels of TPOab ? .. (judging by forum results , it not all that common to have over >1000)

So there's lots of confusing stuff to consider here ..... but then when i realise how much information they chose NOT to collect.. it raises another concerning question for me ..... this study is seriously suggesting thyroidectomy as a treatment for autoimmune hypothyroidism, and their compelling improvements in fatigue and antibodies can be used to show it works well, indeed i have already seen it used as a reference to support the idea of thyroidectomy in other papers ..... but what level of understanding of their subject can we really attribute to someone who designed a prospective study like this ,and yet didn't think they needed to bother collecting so much vital information as 'what symptoms ?' 'What TSH ?' 'What fT4/3 ?' ' was T3 taken or not' ....

"The inclusion criteria included very high TPOAb levels. We do not know to what degree having a high starting TPOAb titer and/or having a marked reduction in TPOAb concentration impacted the improvement in symptoms. It remains unclear whether these results would apply to patients with HT who have lower TPOAb levels. The entry criteria also included HT-related symptoms “severe enough” to consider thyroidectomy, but more specific details are not provided. Therefore, in attempting to translate these data to clinical practice, it is uncertain which patients are most likely to achieve the same benefit from thyroidectomy observed in this study. Finally, the protocol for thyroid hormone adjustment during the study was not well defined, and there were limited data on how dose titrations were made between the surgery and nonsurgery groups, on the use of T3-containing supplements, and on whether normal-range serum TSH values were similar at each follow-up. How these factors may have impacted the results is uncertain. " "Additional high-quality data with longer follow-up are needed before concluding that thyroidectomy has an overall benefit for such patients."

bookish profile image
bookish in reply to tattybogle

Hear, hear. And it worries me that the 'active autoimmune process' will not be slowed one jot as far as the rest of the body is concerned, and our predisposition to attract more AIs will continue unabated.

tattybogle profile image
tattybogle in reply to bookish

indeed....... i'd much rather someone was looking at "how to stop autoimmune disease damaging bit's of us'", than "what happens if we chop the damaged bit's off"

But having said that , the improvement in fatigue scores they noticed does seem astonishingly good : " From baseline to 18 months, the percentage of subjects with chronic fatigue declined from 82% to 35% in the thyroidectomy+medication group versus 84% to 74% in the medication-only group,"

.. and it's intriguing to try and work out why this happened for so many of the thyroidectomy group, and not for many the others .

Given the lack of details on blood results at follow up thyroid treatment , it rather looks like they were all returned to primary care without any specific instructions for gp's other than the usual 'treat 'adequately'(in range) with levo ' .... so assuming the optimisation of Levo dose was up to the usual (crap) standard for both groups .. why does such a large proportion of the thyroidectomy group claim to feel so much better ?

When i first read this paper and was looking for holes in it , i wondered if it might just be because GP's may be willing to increase dose for patients who they know have no thyroid.. but i 'm not sure that will really wash as an explanation because we see plenty of evidence on forum that people with 'no thyroid' have just as much difficulty getting does increases/ any body to pay attention to what they say, as those of us who have a 'whole' thyroid .

Such a shame the didn't collect enough of the the important facts . i'd love to know the nitty gritty of what really went on here.

bookish profile image
bookish in reply to tattybogle

It really is a substantial improvement and very thought- provoking. TPOAb crop up with Pernicious Anaemia, Lupus, Sjogren's, RA, Type 1 Diabetes, Addison's.... and are deemed possibly predictive for Type 2 and NALFD, so perhaps intervention has merit in the greater scheme of AI. The symptoms make me suspect a number had undiagnosed Sjogren's, it being so hard to pin down and regularly overlooked. I would love to know what a true gluten free/autoimmune type diet & lifestyle changes would have done to the antibody levels and symptoms of an additional matched group! Cheers

Gingernut44 profile image
Gingernut44

This is the sentence that got me “Importantly, the study randomly assigned patients to intervention with thyroidectomy versus continuation of their medical treatment without placebo surgery performed.” Were they actually considering having patients in an operating theatre, giving them a general anaesthetic, slitting their throats and stitching them back up (a placebo thyroidectomy) just for research purposes? Whatever next !!!

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