When something catches my eye, there's always a chance someone else will find it of some interest.
Am wondering if any members think they too have had atypical thyroid dermopathy?
[[Translated article]]Thyroid Dermopathy in an Unusual Location
Dermatopatía tiroidea de localización inusual
Author links open overlay panelMP.Bordón
A.CampastriG.Bendjuia
To the Editor:
Localized myxedema is a late manifestation of thyroid dermopathy, occurring mainly secondary to Graves disease. While the condition most commonly affects the pretibial region, it can also affect the upper limbs, neck, and face. It is usually self-limiting and may involve cosmetic or functional impairment. We report the case of a patient with thyroid dermopathy located on the hand that responded well to topical corticosteroids.
Currently in pre-publication status. However, I was able to download a PDF and read it - in English.
I did have this a bit on the top of my right foot, in the early days when I was intreated after my sub-total thyroidectomy. I had the awful itching a few evening ago, in the same place, but as I am a couple of weeks off another blood test after starting a new NDT, I suspect I could be low again. It is alright at present and no marks to show for it.
I had horrendous pretibial myxoedema prior to treatment my shins itched so much I would scratch them until they bled , they had a swollen orange peel look to them the skin was taught like a drum and sort of translucent. The itching would start about 7pm every night and was excruciating it was impossible not to scratch the pain was so exquisite. I came up with increasingly bizarre explanations as to what was causing it, initially I thought it was an allergy to food but after cutting out everything that might be causing it, it persisted. Then I thought it was caused by dog dander or dust mites but that did not explain it’s clockwork like appearance every day. Washing powder, soap, trousers. Then it was visitors bringing allergens into my home… on an on it went torturing me every day. Treatment improved it markedly but even on NDT I still get episodes of itching of my shins and sometimes my back or all over my body it has a feeling a bit like shingles and kind of random like it’s nerve irritation jumping around from place to place you scratch one bit and it’s itching somewhere else 🙄 . It comes and goes and tends to be at its worst in the evening. I don't tend to draw blood as much as I did before diagnosis but it’s still very unpleasant. Showering using cetraben lotion and a dusting of medicated talc afterwards helps quell it.
I am also having Graves ophthalmology like problems with my eyes (I told the medics repeatedly my eyes were bad on diagnosis but no one checked for eye disease) later I was given tests for myasthenia gravis but not the obvious as it’s far more likely to be down to thyroid eye disease than that rarity of an autoimmune disease. They found indications that all was not well but not enough signs or symptoms for a myasthenia diagnosis and I had no MG antibodies probably because it isn’t MG it’s TED. The one sided ptosis has resolved on NDT. But you won’t find what you won’t look for. I presume it’s some absurd money saving NHS policy to do anything but diagnose TED just in case you get a few quid off your glasses 🙄 not that it’s a threat to your eyesight or anything serious like that of course 😠😡🤬
It’s 10 years since I was diagnosed with atropic autoimmune thyroiditis I also have problems with my right hand which I assumed was duputchrens as everyone else in the family has it but they assure me it’s just arthritis. There are big lumps in the palm and white lines to the pinky which curves inwards but no they aren’t cords or other signs of Viking disease, despite being in the right place Very bad trigger finger too in the middle digit. They did agree that wasn’t a figment if my imagination, some learned literature says trigger finger is just a facet of duputchrens . Then there’s the ledderhose disease another family favourite but no one will even look at it! Don’t suppose these other things are down to this mucin excess etc but who knows - not the experts it would seem. I am beginning to feel arthritis is the new medico catchall mansplain.
I found this a very comprehensive paper on Graves’ disease it’s quite technical in places but very interesting, lots on antibodies. It was published in 2015:
Thanks for the illuminating descriptions. A nightmare made worse by lack of human decency, understanding, and (dare I suggest?) treatment.
Did you ever get treated with topical corticosteroids?
That link is to one chapter in a major work - Endotext (which seems to incorporate Thyroid Disease Manager). Huge. Lots of information. And for some things, one of the few accessible sources which discusses things from a clinical point of view.
I just wish they were able to revise and update more thoroughly and more frequently.
You know helvella the initial problems I sought medical help with were either treated as separate entities or were misdiagnosed as menopausal or ignored . As time went on I believed I was a hypochondriac then the symptoms started to gallop but I had given up even going to a doctor about anything but endless chest infections. Eventually I was so poorly just getting from moment to moment sapped all my energy and it never even occurred to me to seek medical help for in hindsight what were clearly serious symptoms that may have been addressed, or not. Why I suddenly decided to go to see a doctor with the plan to refuse to leave the consulting room until I had got a thyroid test I don’t know I think deep down I must have known I was going to die if I didn’t get help. He must have thought my behaviour a bit odd, because I went in and told him straight I was hypothyroid and I needed a blood test for it no common courtesies or beating about the bush no symptoms just a diagnosis and a demand. He asked why I thought I was hypothyroid and I just said it’s the depression it’s terrible (ie I meant even worse than the usual which was pretty bad but not constant as if he could read my mind!). To which he said how about some antidepressants (red rag to a raging bull!) to which I said look here this is beyond anything antidepressants could reach its really really serious like a huge back cloud that just will not lift its relentless. So to his very great credit he probed to discover all the family history of thyroid disorder although I dont think I told him anything about all the other horrible symptoms as if I had lost any empathy I had become very very literal and still am to an extent that’s never fully resolved. Anyway he did the test called me to say I was right iI did have a thyroid disorder but it was overactive. I told him he had the wrong persons results results! I was hypothyroid. He said they were definately my results and to come in and have another test. Of course I then Went into mega hyper overdrive and was going crazy! He called me again to tell me that I was in fact right it was hypothyrodism and it was very important I started my medication straight away but to leave it over Xmas it was just a couple of days away too. He saved my life because I am sure I’d hAve croaked being in that condition . Was not compatible with life. He really made up for all the medical gaslighting I got before seeing him. He really looked after me ,I was so lucky I got him.
Things like literalism and loss of sense of humour (which I suspect are highly inter-related) are simply ignored. Although you can find the odd mention if you read far and wide enough, they are almost entirely ignored in anything more recent.
Yea I’d say I have no sense of humour whatsoever, but I did once. I think it must wreck all the associations needed in the mind for humour. Sometimes the penny drops long after the joke’s gone flat! So there’s sone vestige of it trundling on very slowly in the background 🤣🤣🤣
That very much seems a rational (possible) explanation.
You remind me of being a young child, one of my relatives was often described as having no sense of humour. As if they had been born without one.
From where we are now, I do wonder why. But that generation had gone through two world wars, the depression, etc, Plenty of possible non-thyroid factors.
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