A review of ME/CFS syndrome and thyroid function - Thyroid UK

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A review of ME/CFS syndrome and thyroid function

diogenes profile image
diogenesRemembering
22 Replies

This review integrates thyroid function and various non thyroidal phenomena and deals also with the need (or not) to use hormones T4/3 in longterm intensive care patients.

Theory: Treatments for Prolonged ICU Patients May Provide New Therapeutic Avenues for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

May 2021Frontiers in Medicine 8:672370 Follow journal

DOI: 10.3389/fmed.2021.672370

Dominic Stanculescu, Lars Larsson, Jonas Bergquist

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diogenes
Remembering
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22 Replies
Nat107 profile image
Nat107

Hi Diogenes is this report in relation to patients who already have hypothyroidism or ME/CFS patients who haven’t please as I am really interested to no Thank you

diogenes profile image
diogenesRemembering in reply toNat107

Thes are ICU patients who were not hypothyroid before whatever reason they had to go to the ICU ward. It shows how such patients can have disturbed thyroid function.

Nat107 profile image
Nat107 in reply todiogenes

I see, interesting as I am hypothyroidism and also have ME/CFS just wondered why they haven’t tried adding t3 for hypothyroid patients who have ME Thank you Diogenes

Localhero profile image
Localhero in reply toNat107

Hi Nat107

There has actually been some research on this. Look at this post from the weekend and some of the links mentioned in it for information.

healthunlocked.com/thyroidu...

Nat107 profile image
Nat107 in reply toLocalhero

Thank you localhero that’s great I will read that thanks

PiggySue profile image
PiggySue

Hi Diogenes, I am probably being a bit dim, but how can I access this info? It looks really interesting.

PiggySue profile image
PiggySue in reply toPiggySue

So, I put in the DOI number and have this from Frontiers in Medicine: frontiersin.org/articles/10...

and this from PubMed: pubmed.ncbi.nlm.nih.gov/340...

I look forward to reading it!

Thanks

Nat107 profile image
Nat107 in reply toPiggySue

Yes me too piggySue I have faulty DiO1 genes also found by doing 23&me

PiggySue profile image
PiggySue

Fascinating....sadly quite a bit goes over my head as I am not medically trained...

but as someone with lowish cortisol who 'passed' a short synacthen test (I got to 489nmol/L or something after an hour) I do feel that there is something 'up' with my HPA axis.

I self medicate on T3 only and I have had general (social media) advice from Paul Robinson (definitely not a consultation) that I might try LDN, but I don't really know how to go about that and haven't researched (bit scared, I guess).

Would LDN be a low dose glucocorticoid treatment?

klr31 profile image
klr31 in reply toPiggySue

Low Dose Naltrexone, I believe.

Timetraveler67 profile image
Timetraveler67 in reply toPiggySue

I was also looking into LDN for help with ME/CFS but didn’t take it any further when I found out you can’t take codene pain meds with it as it stops them working I take codene for pain as nothing eles seems to work. I read good reports about LDN

DippyDame profile image
DippyDame

frontiersin.org/articles/10... Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study

Hoxo profile image
Hoxo

I have ME/CFS diagnosis. And Graves and Hashis (blocking and stimulating antibodies) also ‘passed’ short synacthen test but not quite achieved rise from baseline cortisol. Also low immune system. Currently on 5th shingles outbreak and on antivirals. On NDT which has improved things. Also monthly B12 injections. Managing to get back to work part time. We plod on and await further medical breakthroughs. 🤞🙏

tattybogle profile image
tattybogle

Very interesting read. Thank you for posting it diogenes.

if only some of our endocrinologists were as interested and well informed about thyroid hormone function as these guys seem to be .

Nice to see your groups paper in the references

tattybogle profile image
tattybogle

Crikey .. just had a look through the vast list of references .. over 300 of them. including:

thyroidpatients .canada. Skinner . Lowe. Peatfeild. Healthrising. as well as loads of diogenes' group papers.

klr31 profile image
klr31

Does anyone know where I can find this gene result on my 23andMe test results?

Thanks.

Karen

TSH110 profile image
TSH110 in reply toklr31

Th e links gives the relevant snps/rs numbers to search for.

You can then check them on your 23&me raw data by searching for the rs number

ME/CSF:

snpedia.com/index.php?title...

Hypothyroidism:

snpedia.com/index.php?searc...

Hyperthyroidism:

snpedia.com/index.php?searc...

If the links don’t work, google snpedia + disorder name and they should come up

klr31 profile image
klr31 in reply toTSH110

Thank you.

Nat107 profile image
Nat107 in reply toTSH110

Do you no the interpretation of the rs results for example C/C. A/A G/G Thank you

TSH110 profile image
TSH110

If you hit the rs number, given in the links I provided, that takes you to a more detailed page for that rs number with the relevant combinations: A/G etc and what that means. You can then compare it to your results in the raw data.

Eg:

snpedia.com/index.php/Rs247...

Hope that helps

Nat107 profile image
Nat107 in reply toTSH110

Thank you very much

CaroleM-A profile image
CaroleM-A

Thank you for this Diogenes

My son became very ill with CFS/ME aged 14 and I was always convinced it was thyroid related. No one would help so I trialed small doses of armour thyroid, gradually increasing it with medical help, and he went from four years housebound to starting college in six weeks! The NHS still didn’t believe that was what it was though

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