Myexadema tissue biopsy

[Joanneconnor]

Has anyone ever had a tissue biopsy to confirm myexadema as u think I'm in the 0.5-4.3% who have this tissue in a lot of places, I've been waiting over 2 weeks now for a result, they said 7-10 days, what do you think the hold up is?

[elicarol]

Mine took about 15 business days and once before it was 18 business days

[Joanneconnor in reply to elicarol]

Wow what was your results and what was the treatment and did it work, so many questions sorry 😐

[TaraJR in reply to elicarol]

Where and how did you get this tested?

[shaws Administrator]

I'm not sure what the hold-up is and have never heard of this test previously. Myxedema being another word for hypothyroidism.

[helvella Administrator in reply to shaws]

I think that skin biopsy is more likely in cases of pretibial myxoedema. Link below is quite useful and includes photographs and general explanation of the symptoms and causes, etc.

Pretibial myxoedema is also known as localised myxoedema, thyroid dermopathy, and infiltrative dermopathy.

dermnetnz.org/topics/pretib...

JOLLYDOLLY

[shaws Administrator in reply to helvella]

Thanks for Link helvella. Very informative.

[endomad in reply to helvella]

In all the time iv been reading and researching my condition, that is the first article iv ever seen explaining it. I had mucin all over it was awful especially on my back and neck. I couldn't pinch the skin on any part of my body, now almost entirely gone, just knees to ankles left and I am hopeful that will eventually go. Thank you for the link x

[JOLLYDOLLY]

I am like Shaws, never heard of tissue biopsy before. Is this to detect a thyroid condition? Only ever had blood tests. I always thought Myxoedema was another name for Under active thyroid. Hence the rare Myxoedema coma for untreated hypothroidism. I was in a coma as a baby for a short while.

Hope you get your results soon. Take care

[Joanneconnor]

Shaw’s & jollydolly it’s very much like pretibial myexadema only it’s not just in the legs, it’s mucin (Hyaluronic acid) characterizes hypothyroidism but I have a lot and over the years it has accumulated more and more so I asked for biopsy so they would treat it, as my whole body feels heavy and aches, think the treatment is corticosteroid injections and immunosuppressants, they test it with Alcian blue dye apparently

[Joanneconnor in reply to Joanneconnor]

Pretibial myexadema but without the lesions

[shaws Administrator in reply to Joanneconnor]

Joanneconnor if you want to draw a members' attention to a point, you put an @ at the beginning and the first couple of letters you will see a selection appear below. You click on the name(s) you want and it turns to blue so you know that will get their attention.

Thank you for your information re Pretibial.

[Joanneconnor in reply to shaws]

Thanks shaws

[helvella Administrator in reply to Joanneconnor]

I had no idea about Alcian Blue - so looked it up and found this:

leicabiosystems.com/patholo...

[LindaC in reply to helvella]

Thank you so much

[shaws Administrator in reply to Joanneconnor]

In the 'olden days' (i.e. before the introduction of blood tests and levothyroxine - around the 60's I believe) people were diagnosed with myxedema according to theirsymptoms and 'mucin' which I understand was when the doctor pressed their skin and there was an indentation which was slow to disappear they were then prescribed NDT (natural dessicated thyroid hormones.)

[Joanneconnor in reply to shaws]

Yes that’s right my mucin does not leave an indent, although when I try to squeeze the skin like my normal skin i cannot lift top layer off it it is hard and hurts when I try to squeeze

[LindaC in reply to shaws]

That is what I've heard too shaws.

[Joanneconnor in reply to shaws]

I have been on NDT for 2 years and I think it has helped with a lot of symptoms I’m not sure they will treat this but I’m gonna keep my fingers crossed 🙂

[endomad in reply to Joanneconnor]

I was covered head to ankles, it was awful and my limbs felt too heavy for my body. No Dr, endos or training university had heard of it and we're even less interested in finding out. I have been T3 only 3 years and it has all gone except lower legs. I also went low carb not sure if that helped. I gained 6 stone in 2 years after thyroid removed, nothing worked till I went T3 only. It was a miserable time for me then and I was extremely ill. It does go xx

[JOLLYDOLLY in reply to Joanneconnor]

Thank you for explaining joanneconnor,

It is really wierd to be honest, as I have oedema in both legs for many years, but the left leg/foot in particular started initially when my meds were dramatically reduced many moons ago (I am on the right dose now and the oedema is disappearing), . They tell me it is and was not thyroid related, which I completely disagree with, but I also had up until recently fluid in my legs and at the worst all through my body. It is only recently that I have been able to start wearing "normal shoes"

So please keep us updated and hope all goes well x

[LindaC]

I had no idea that this was tested! On what basis and by whom was this test arranged for you? Hope you get your results soon.

There seems to be an issue - stemming from my G-Grandmother - who ended up with dementia [treated as if] but, previously being very thin, ended up filling a two-seater sofa and couldn't walk for obesity... filled with mucin, perhaps!? She died in 1950 and there is a clear pattern of slim to a certain point [I thought I'd escaped it!], then excessive weight gain that won't shift... no matter what.

[Joanneconnor in reply to LindaC]

LindaC i originally paid private for blood tests as I thought I had easiofacitis ( tissue disorder) come back negative the nhs paid for scan and i did have Odense in areas relating to pretibial myexadema then was messed around a lot and ignored asked my doctor to be referred to dermatologist in the end she was reluctant I said “well I want a biopsy then, my skin is not right” so they did punch biopsy in docs surgery

[LindaC in reply to Joanneconnor]

Thank you Joanneconnor - right, that's helpful - I'll check it out. Hope all goes well for you. Take care and be well xox

[Joanneconnor in reply to LindaC]

Thanks x

[shaws Administrator in reply to LindaC]

Before 'modern' blood tests all doctors seemed to be aware that unexplained 'weight gain' was due to hypothyroidism was one the main clinical symptoms and patients were given NDT. No T4 until around the 60's (I believe).

[Joanneconnor in reply to shaws]

Yes I think synthetic T4 has not reversed the thyroid tissue as NDT would of

[LindaC in reply to shaws]

Yes shaws, with NDT going back to the late 1800's and with my home town being one of the first in the UK to use sheep thyroid gland to treat a patient. The actual history of the thyroid is amazing, aspects of its consideration going back so far as even BC, but this one you won't believe

One of the first people treated with thyroid gland in the UK was in my City, my university - see link below - yet today, at that place, thyroid testing seems to supersede everything and where Levo is generally found sufficient for most...

“In 1891, a young Newcastle doctor, Dr George R Murray, injected an extract from a sheep’s thyroid gland into a patient with symptoms of thyroid under-activity. Over a period of months, the patient got much better."

However the literature - see link people - goes further to say...125 years later around 3% of the population takes thyroxine or thyroid medicines. "Considering that the idea of a ‘hormone’ hadn't even been invented at this time, Dr Murray made a remarkable medical advance; one that millions of people continue to benefit from."

George Redmayne Murray did indeed make a remarkable medical advancement... BUT to say that: "The commonly used treatment, thyroxine, was discovered in Newcastle in 1891." Hmm, that's a bit of a stretch re George Murray - who extremely cleverly used sheep thyroid - but did not 'invent' or discover thyroxine, other than by coincidence, which wasn't isolated in pure form until 1914 at the Mayo Clinic by Edward Calvin Kendall from extracts of hog thyroid glands (pigs used to this day!). The hormone was synthesized in 1927 by British chemists Charles Robert Harington and George Barger.

ncl.ac.uk/press/news/2016/0...

Don't get me started on the TSH test... where Robert D Utiger devised the test in 1965 and someone in Newcastle [again] was involved with the devising of the UK TSH test, I believe in the 1970's??

Robert D. Utiger, MD was a pioneering doctor in the field of endocrinology. His life was largely devoted to academic medicine and research. He was director of the General Clinical Research Center at the University of North Carolina, and then went on to later become a Clinical Professor of Medicine at Harvard Medical School.

In 1965 he published the landmark article 'Radioimmunoassay of Human Plasma Thyrotropin', this kicked off use of the TSH test as a useful tool to help evaluate thyroid dysfunction, one of the most widely ordered tests in all medicine today.

Dr. Utiger developed the test for TSH and developed the test for T3:

Helped discover the importance of T4 to T3 conversion;

Awarded: Distinguished Service Award from The American Thyroid Association;

Became the Editor-in-Chief of the journal of the ATA.

Interestingly, with all of his

background in research on thyroid hormones and thyroid tests he said he: “Hoped doctors will still practice medicine and treat the patient, not the TSH” and said that ‘still the best test is evaluating body temperature and heart rate’.

Fascinating stuff that seems to have escaped endocrinologists - including the illustrious Newcastle - still to this day.

[Joanneconnor in reply to shaws]

I had no clinical symptoms when I was diagnosed through tsh, and was still ok taking Levo for 2 years until I got pregnant and that's when this thyroid tissue started to expand and stay hard 😕

[JOLLYDOLLY in reply to LindaC]

Thank you Linda C for telling us. I find this very interesting. As I have always had a underactive thyroid (been born with only a partial non working gland) and never had a problem with weight, until my mid thirties. They radically changed my dose and I have been fighting with oedema and obesity ever since. The ironic thing is, I do not eat anymore than I did when slim, but not so active due to my current situation. As said earlier, my ankles and legs started swelling as soon as they reduced my meds, but it fell on deaf ears and all I have been told since is "Take responsibility for my actions" and also classed as "Morbid obesity/high risk" Similar to endomad above, my weight has virtually doubled/higher in nearly twenty years. It is now coming off very slowly, but I know it is not me now. Thank you for explaining.

Take care x

[LindaC in reply to JOLLYDOLLY]

Wow - that's very interesting JOLLYDOLLY! Yes, it often all falls on deaf ears, well cloth ears.

I was not overweight - but, following 8 years of prolonged stress, I followed in the way of several other family members in my 40's - our paternal G-Grandmother, just after WWII filled a 2-seater sofa and couldn't walk for obesity [like her daughter, my G-mother, she too had been slim - seen pics - until she hit 40+]. Years of rationing and still rationing going on... it was not overeating. She died with 'dementia' yet filled with 'fluid' - likely mucin - without a hypothyroid diagnosis.

I empathise entirely and no, I accept that it is not you... same happened with me. I used to be able to eat/drink whatever I wanted. I have for so long taken responsibility for what I eat/high amounts of appropriate exercise... to try to deal with any/everything that docs have ignored or neglected, yet still they 'patient blame'. After 12 years I finally managed to lose almost 50 lbs - off for 15 months - got ill [I still have lots of hypothyroid signs/symptoms - even though on 50 mcg of T3 alone for years - at times more] and it all unravelled again. I could not believe it because I'd finally 'found the key' I'd been searching for, for 12 years. Severe vertigo/tinnitus led to having to eat [GP recommended] starches - horrific vomiting - once vertigo meds worked, I then went straight back to LCHF - but the damage was done... I'm gutted... kind of wish I was!

Look after yourself... these are simply not effective doctors that we see - some of us might be better off with the old 'Snake-Oil Merchants', for what use the current medics are. Very best to you - just keep at it to help yourself. xox

[JOLLYDOLLY in reply to LindaC]

Hi LindaC,

I have read he link about Pretibial myexadema back to my hubs and daughter, I have even got the pics of my legs and ankles. They were treating me for cellulitis!

When I was misdiagnosed, my original meds were 200 mcg of T4, the then GP reduced them to 75mcg! (yes that low) I was like a walking zombie, just slept all the time, slurred my words, brain fog, the lot! I then developed gyne problems and had several miscarriages. It was my gyne that said my thyroid was completely out of kilter and referred to a private Endo. After much ado, I am now on my original dose of 200 mcg of T4 plus 20 mcg of T3. Only now starting to lose the weight, managed to lose 21lb in three months. I also have sleep apnoea, B12 deficiency and pernicious anaemia. (The latter two do run in the family and also thyroid conditions)

Fortunately I do not have any heart problems, but due to the oedema, I now have respiratory problems, so have to have oxygen at night. I also take a daily water tablet as well.

My parents were told that I was lucky to be alive, as they did not find out there was a problem until I was five weeks old, by that time I was already in coma. But the quick thinking of a Health visitor, saved my life.

I am so fed up of being judged and told to get of my arse and walk, called all the names under the sun by some people (fortunately not my immediate family) - The thing that upsets me the most, is being categorised - even offered weight loss surgery. If I ate to extreme I could understand why people would think I was big due to over eating but I eat more or less the same, most probably less then I did nearly 20 years ago, I am so mindful of not being mobile.

If I got a penny for every time I have seen someone raise their eyebrows, I would be a very rich golden chick ha ha! )

Due to above, I was borderline diabetic for a little while but that was only a blip due to the medication not being at the right dose.

It is never ending is it?

You take care of you too and please message me anytime

Best wishes

xx

[LindaC in reply to JOLLYDOLLY]

That sounds really complex and so awful for you to have gone through from being a baby. So difficult for your parents yet still ongoing for you - pleased that you've been able to finally get things under control. It was all news to me that weight CAN have so little to do with food [Calories In] and exercise [Calories Out] because for years I too had believed this. That may be the case for many but certainly not for all - hormones play a big part too [leptin/ghrelin, cortisol, T3, and more, then insulin can be affected] - obesity results... and no one listens - yes, eye-rolling - I've even said to a GP, "Will you stop rolling your eyes!".

I suppose I had various signs/symptoms over years but nothing could have prepared me for the appalling attitude of endocrinology and GPs re hypothyroidism and weight gain. My first sign [from 2003 following 8 yrs of diabolical stress] - apart from inexplicable weight gain that wouldn't shift no matter what I did -- was heart issues for four years, until I ended up paying privately [summer 2007] to be told, "Yes several heart problems but you're fine". It would have helped if the consultant, instead of asking if I had hypothyroidism as a throw away, [how could I have known?], assumed that I hadn't, which could have been a starting point.

BUT, having received my MR's, I already was hypothyroid by their 'ranges' in 2003 and then 2008 yet never told, despite presenting with several related issues. By 2007/08 it was obvious to an optically challenged man on a galloping horse that something was wrong via hypothyroid signs/symptoms. I asked to be referred [via Dr Chris on This Morning describing signs/symptoms] but was told by two endo's that I wasn't. I then saw Dr S and Dr P [for supplement advice] in Feb + May of 2010 who said "Just had to look at you"... but they took my health history, considered bloods and examined me; using good old clinical judgement to diagnose. Long story but NHS also paid for imported Armour Thyroid for several years, all accepting diagnosis of Dr S. [Dr P always said I'd need T3 alone for life - gave me the source - and his advice is certainly worth more than most of them combined. OK from 2010 to 2015 [with a few blips], then it all unravelled again.

Long story followed from 2015, [including being un-diagnosed by an endo and other medics being told that I had 'self diagnosed' and 'self medicated'], despite another source of bizarre illness, which then tipped me over into T2D. I went LCHF and lost almost 50 lbs in 4 months - EFFORTLESSLY [look at my post - 2015 or 2016 for a run down] = more calories and no exercise: that was the final point for me to grasp that all of the years of strenuous exercise, low fat etc [medical tale of the time] had done nothing for weight. I went down to a size 12-14 [having been a 10 - 12 at my usual, and 8 at my best] and thought, 'Right, that's it - I've finally found the key'... until - see above - it all unravelled again. It is SO difficult and no one wants to hear/know or believe what's being said... maybe scares them that this can happen!?

Thank you so much for your kind offer - if I ever need to sound off, and this is reciprocal to you too - I'll get in touch. Among other things, I used to advocate for people re their mental health [background in Psychology], so I've no issue taking these beggars on... I'm almost ready to/in the process of doing so - unbelievable what I've just discovered [spinal/bone issues] - KNOWN to them and/or IGNORED - which will likely take until I die to challenge them.

Very best to you and keep on working at it. Take care and be well xox

[JOLLYDOLLY in reply to LindaC]

You have been through the mill yourself.

I have been told to "take responsibility for my actions" and also one Endo implied that my hubby was an enabler! Been accused of overeating and being lazy as well. I reported the Endo, but got no where as she denied everything, but as a result does not want to see me again, but she has no fear on that score, I only went to her because the NHS were threatening to take me off the T3 due to the expense. But I am still on it three years later.

I think the worst thing that was said to me and I have quoted it many times, was when my original GP who was instrumental in lowering my dose, said to me that (quote) "It is dangerous to have too much T4 as it is bad for your heart, but if you are not getting enough, we will always give you the higher dose anyway!" What a contradiction and would not increase my dose as evidently Dr's in the private sector were being struck off for giving thyroid meds as slimming agents - what has that got to do with me, I asked! Never got a reply but it changed my life forever.

I have had right side heart failure, five years ago, but that was due to the pneumonia and my lungs filling up with fluid. I think I have used my nine lives over the years.

I do believe, if I had been left alone initially, I would not have the problems I have today. But my present GP, will just say "yeah yeah yeah" and he was the one that missed the fact I had sepsis last year and was rushed into hospital. Just glad I am here to tell the tale.

I am just glad I still have my SOH.

Take care of you and keep in touch xx

[LindaC in reply to JOLLYDOLLY]

I am beyond disgusted by their sloppy, cavalier, sneering attitude - quite frankly, I think they need help but perhaps they need to be denied treatment!

Above is dreadful... just a good job we can look out for ourselves - so many of us have to. Yes, think I've used up a wee few lives too.

Have a good weekend and enjoy! xox

[JOLLYDOLLY]

Yes you too - the weather is good and today has been a nice one. Take care enjoy xx