Both sensorimotor and autonomic neuropathy may be common in hypothyroidism, despite treatment

[helvella]

Just saw this from diogenes' collaborator, Johannes W. Dietrich.

Both sensorimotor and autonomic neuropathy may be common in hypothyroidism, despite treatment

Bojana Bazika-Gerasch, Nina Kumowski, Elena Enax-Krumova, Miriam Kaisler, Lynn Bernadette Eitner, Christoph Maier, Johannes W. Dietrich

Scientific Reports, May 2024, Springer Science + Business Media

DOI: 10.1038/s41598-024-63158-w

What is it about?

A new study may provide a previously unknown reason for reduced quality of life in treated hypothyroidism (syndrome T).

Systematic investigations of persons with treated hypothyroidism revealed unique signs of sensorimotor dysfunction in quantitative sensory testing (QST). Being marked by thermal and mechanical hypersensitivity, the pattern differs from the constellation seen in diabetes and other conditions leading to polyneuropathy. This may explain some of the sensory symptoms of syndrome T.

Additionally, the study found reduced heart rate variability (HRV), depending on the titres of thyroid autoantibodies. This observation, indicating possible autonomic neuropathy, could explain the components of syndrome T that affect the circulatory system.

Other results of the study included that both anxiety and depression were significantly more expressed in subjects with autoimmune thyroiditis and that they were also associated with antibody titres.

The autonomic function significantly correlated with anxiety and depression, too. Additionally, the depression percentiles in the hospital anxiety and depression scale (HADS) were negatively associated with step-up deiodinase activity (SPINA-GD). In a control group with normal thyroid function, both autonomic and sensorimotor function correlated with the thyroid’s secretory capacity (SPINA-GT).

Why is it important?

About 10% of all patients with treated hypothyroidism report ongoing health issues, including fatigue, impaired memory (“brain fog”), depression, hair loss, palpitations, propensity to fainting, weight gain, both cold and heat intolerance, and fibromyalgia-like musculoskeletal pain. The reasons for this condition, which is referred to as “syndrome T” or “syndrome of residual symptoms of hypothyroidism on T4” (SORSHOT), are unknown. Potential mechanisms include psychological issues, autoimmunity of the thyroid, comorbid autoimmunity affecting other organs, inappropriate dosage of thyroid hormone and wrong modality of treatment (i.e. therapy with levothyroxine only, omitting substitution with liothyronine).

However, the evidence is still low, and important questions remain unanswered. The results of the new study may reveal some missing pieces of the jigsaw.

Perspectives

“

The study shows that patients with hypothyroidism may suffer from polyneuropathy, even if sufficiently treated with levothyroxine. This observation may pave the way to novel treatment modalities for syndrome T.

”

PD Dr. med. Johannes W Dietrich

Ruhr-Universitat Bochum

growkudos.com/publications/...

20/08/2024 - Adding a couple of twitter replies:

Dr KL

@dr_kevinlee

This is interesting “In a control group with normal thyroid function, both autonomic and sensorimotor function correlated with the thyroid’s secretory capacity (SPINA-GT).”

2:18 AM · Aug 18, 2024

AND·

Johannes W. Dietrich

@drjwdietrich

This observation suggests that even slight variations in #thyroid function, as seen in healthy euthyroid persons, may impact the function of the nervous system. It is part of a continuum that extends, with increasingly strong effects, to subclinical and overt thyroid dysfunction.

10:00 AM · Aug 18, 2024

[Regenallotment Ambassador]

very interesting 🤔

[GlowCoach Administrator]

Indeed many with POTS and multi system dysautonomia also have thyroid disease.

I'm sure it will take years for better treatment but in the mean time a better understanding from doctors would go a long way.

[LindaC in reply to GlowCoach]

I'm currently investigating Ehlers-Danlos syndromes. (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

[GlowCoach Administrator in reply to LindaC]

There's only certain types of EDS that are rare. The most common type hEDS is actually fairly common, just rarely diagnosed.

POTS and various types of dysautonomia are linked with EDS.

[LindaC in reply to GlowCoach]

Thank you so much for this. I tried the dysautonomia route about 5 years ago with a Prof. of CFS... waste of time. Yes, I get the fairly common, just rarely dxd that would be right enough. Recently someone put me onto EDS in terms of my long standing freezing cold shins, finally 'fixed' but back again... somewhere EDS says, "Freezing from the inside out" + I have several other symptoms. Fancy, as with the thyroid, having to continually check stuff out... what on earth are 'they' paid for!? Thanks once more. xox

[GlowCoach Administrator in reply to LindaC]

The POTS UK website has a list of doctors I believe. Join a POTS group and get recommendations, some see people virtually these days.

[LindaC in reply to GlowCoach]

Thank you so much. Will do.

[helvella in reply to LindaC]

You might well already have seen my original post, read this blog, listened to the program, ... But seems worth a quick reply in case anyone is at all interested.

Jessica Eccles - Hypermobilty/Ehlers-Danlos

This is a blog post originated from listening to a radio program by Dr Jessica Eccles about Hypermobilty/Ehlers-Danlos. Despite not being about thyroid, it might well be worth a look and even a listen.

However, BBC tend to withdraw some programs after a while - some seem to remain for years, others a year, months, or less.

helvella.blogspot.com/p/jes...

[LindaC in reply to helvella]

Thank you so much for this! xox Looks excellent - reading for tomorrow.

[stiff19 in reply to LindaC]

exactly all they tell me is they dont have all the answers! My daughter suffers greatly from Des symptoms ,fits criteria and they said we will put it down as hyper mobile because its all treated the same 😡 they make light if her struggles and I fear health inequality and it just never ends, meantime she has no help whatsoever.

[stiff19 in reply to stiff19]

eds sorry for typo

[helvella in reply to stiff19]

helvella - Editing HealthUnlocked Posts/Replies

Having read a post or reply you have made, I wonder if you realise that you can edit (or delete) any posts or responses you have made here. That means the title, the text or images.

This is not to say you have done anything wrong. This is meant to help you by pointing out this option, and help to do so, not to criticise.

There is no need to reply to this! If it was helpful, ticking the "Like" button lets me know.

Follow the link below for details

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[LindaC in reply to stiff19]

I know, it is shocking... I've been known to say to an endo re hypothyroidism, "Don't you even have any 'scientific' curiosity'? Pay Cheques seem to be the goal of a lot of them... patients = a means to an end! Tragic. Hope you find something, somewhere from someone. We can but hope. Best wishes. xox

[AmandaK]

This sounds potentially a good area for further investigation. I winced, however, at the statement, 'potential mechanisms include psychological issues ...' as some in the medical profession might seize on this to the exclusion of other factors.

Can I ask, out of curiosity, if ThyroidUK is planning to invite someone with the knowledge and stature of Diogenes to join the forum and to carry out a similar advisory role (unless I misunderstood his role)? His input was invaluable. Thank you.

[helvella in reply to AmandaK]

Maybe ask?

We are just moderators who try to keep the forum running smoothly - and do not know of any TUK plans, etc.

[AmandaK in reply to helvella]

Of course, I was forgetting that!

[RedApple in reply to AmandaK]

AmandaK, We all miss Diogenes, his input was invaluable. Do email your question / suggestion to [e-mail] 😊

[helvella]

I note that my link is to Kudos - a site which allows people (primarily researchers and others in the field) to create lists of research topics and add comments.

Had a very quick look at Johannes W Dietrich's Subjects page - and it has some very thyroid-related papers.

growkudos.com/profile/johan...

I've long felt that even when papers are open access, it has been difficult to see how the rest of the field has reacted to them. Whether praise, criticism, suggestions, or whatever else. Kudos just might offer both a direction towards interesting papers and some interesting comments.

I don't think you have to sign up to view.

[arTistapple]

Well I think that started off disappointingly but ended up positive. Recognition absolute for the limitations of Levothyroxine Monotherapy for at least 10% of us!

Again, it will never bring anything about in today’s climate with dullard endocrinologists in charge.

Any idea how the number of people on the Forum fit in with percentages in the U.K. Is it 10%? I understand it’s 2 million people in the U.K. diagnosed (and we know how hard it is to get diagnosed in the first place).

I probably just need to get my calculator out.

Even so I know lots of people now who are not doing well on said monotherapy but would not say “Booh” to a goose. Their situation will not be counted.

Also watched a relatively recent webinar with Bianco. Honestly I was disappointed with him. Talked about TSH still being a very important factor. Worse he even talked about T3 compromising other health issues, osteoporosis, heart etc. I was under the impression that some excellent research had written this off. How can someone as otherwise ‘progressive’ as Bianco spread this stuff?

I can save my fare to Chicago to see him then!

[nightingale-56 in reply to arTistapple]

I have also been disappointed with Bianco and feel he was only 'jumping on the bandwagon' when he brought his book out not so long ago.

[arTistapple in reply to nightingale-56]

Yes it seems to me they are just ‘bandying’ about with the research. He quoted 20 good research papers that show T4/T3 combination therapy is preferred by patients. Ah now we see the problem! It’s the patients preference - so it must be wrong! So the patients like it but the endos don’t. Too much in this vein today.

It’s very much left to the top guys ‘opinions’. However as they know so little about dosing and don’t put anything into it themselves, how would they possibly know anything?

I have said it before, dermatology used to be the place for lousy doctors to go hide in. It was thought they did least damage there . However that seems to have been usurped by endocrinology. Ghosts.

Back to PaulRobinson excellent books. I have just found something very exciting in there that I have been aware of but had no idea that there was info about it. ALSO found other research from elsewhere to back it up.

I will post about it when I get my head around it better.

[nightingale-56 in reply to arTistapple]

Still think Dermatologists are hiding. Even if they do know (and an Eminent Dermatologist could not look me in the eye and tell me what caused my skin problem, when I was pretty sure that he knew) they will not tell you the truth. I look forward to hearing what you have to say about what Paul Robinson says in his book(s). I have one of his books, and find it a good source of truth. Sounds exciting!

[arTistapple in reply to nightingale-56]

Crikey nightingale, it’s still going on. AND why would a doctor NOT tell you if they knew? It gets worse!

[nightingale-56 in reply to arTistapple]

It does get worse. From what I have found out, but now lost as it was on original TUK website before HU, soap should not be used if Acacia Powder was not heat treated properly, and I think this is what happened when Mercury Pharma took over Goldshield. Too late to claim anything now, but we still cannot use soap and shampoo, detergents of any kind. I would like some information about how this can be overcome. It has affected my son and me for the past 14 years. I think Doctors do know, but are trying to cover this up! Really can't keep talking about this, but if anyone has any answers, I would be grateful for information.

[arTistapple in reply to nightingale-56]

Right I understand. I cant pretend to actually know anything about this. I only know about the stuff that annoys the life out of me.

Soap wise I can only use proper Marseille soap, especially on delicate parts of my anatomy but yours sounds like it’s on a different scale altogether.

Just sending my best wishes to you!

[arTistapple in reply to nightingale-56]

Nightingale been trying to PM you but keep ‘losing’ it. This has happened a number of times before. Infuriating. Don’t know if it’s a Healthunlocked thing or my Wi-Fi signal.

[nightingale-56 in reply to arTistapple]

We have awful trouble with Wi-Fi signals too, so could be ours as well. I'll try and PM you again.

[teenarocks]

After living with Hashimotos for 32 years I could have told you that without a study. But we are only patients living in our bodies. We don't know anything. Glad to see it in print and I hope the endos read it.

[Hidden]

I’m sorry that I’m late to this post. The study of Johannes W. Dietrich is immensely interesting to me and may just be the ‘missing link’ which I’ve been searching for since 2017

Both sensorimotor and autonomic neuropathy may be common in hypothyroidism, despite treatment

In 2018 I was diagnosed by a neurologist who specialised in Neuropathies with sensorimotor and autonomic neuropathy.

For the benefit of those who aren’t familiar with these conditions, please see the brief summary below:

Sensory Neuropathy

Symptoms of sensory neuropathy can include:

pins and needles in the affected body part

numbness and less ability to feel pain or changes in temperature, particularly in your feet

a burning or sharp pain, usually in the feet

feeling pain from something that should not be painful at all, such as a very light touch

loss of balance or co-ordination caused by less ability to tell the position of the feet or hands

Motor neuropathy

Symptoms of motor neuropathy can include:

twitching and muscle cramps

muscle weakness or paralysis affecting one or more muscles

thinning (wasting) of muscles

difficulty lifting up the front part of your foot and toes, particularly noticeable when walking (foot drop)

Autonomic neuropathy

Symptoms of autonomic neuropathy can include:

constipation or diarrhoea, particularly at night

feeling sick, bloating and belching

low blood pressure, which can make you feel faint or dizzy when you stand up

rapid heartbeat (tachycardia)

excessive sweating or a lack of sweating

problems with sexual function, such as erectile dysfunction in men

difficulty emptying your bladder of urine

loss of bowel control

A combination of sensory and motor neuropathy is particularly common (sensorimotor polyneuropathy).

Info

nhs.uk/conditions/periphera...

I was diagnosed with Idiopathic Neuropathy because, after a wide blood test screen, they could not identify any underlying reason for the PN. Fatigue is a huge issue and has got worse since diagnosis. I was sent away with a prescription for Gabapentin which of course has done nothing to help the Autonomic Neuropathy which is a significant issue. Often, an auto immune disease underpins PN but all blood tests came back as normal.

Over recent months, I’ve got sicker and sicker a variety of unexpected symptoms have emerged: retention of urine (catheterised since March); exacerbation of all autonomic symptoms. I’ve never sweated, but I’m constantly overheated and even on cooler nights, bed covers are thrown off. BP has hit the deck and contributes to increasing fatigue Diarrhoea and tachycardia have joined the party. I’m seriously short of breath, with chest pain and every symptom of hyperthyroidism / overmedication imaginable - except FT4 and FT4.

My GP has patience in abundance and is trying to piece together what’s going on. I slur my speech when tired, have face and jaw pain and do a good impression of Edna The Inebriate Woman. The more tired I get, the worse I am. It doesn’t take much to make me tired either. Today was a sunny day and OH and I parked on the prom and I walked a short distance to get an ice cream. Unbelievably, I was too tired to eat it properly Most of it went down my black tee shirt as my tongue went into a spasm. I sat and cried and the seagulls had a field day.

Last week I had an appt with my long suffering GP and he said:

I’m looking at a hypothyroid woman who’s optimally medicated (Head in hands)

He told me he’d consulted a colleague and wanted to do some blood tests for Abs for Mysthenia Gravis a neuro muscular disease which presents similarly to hypothyroidism. I await the results. MG is an autoimmune disease.

In the meantime, I’ve just read the above and am wondering could this be the answer to why the increases/decreases/change of meds have had little effect? Could it be that as the PN progresses my health deteriorates rapidly?