This seems like a silly question, but I was told by a doctor about 6 months ago that I possibly have pretibial myxedema thanks to Hypothyroidism and following a bite that got pretty badly infected. A dermatologist said it was gravitational excema however.
I developed pretty horrific OCD that's completely ruined and restricted my life afterwards, not wanting to touch my legs. Partly due to the infection (which I am told is now gone) but mostly because I am terrified of becoming disfigured or impaired by myxedema. I looked it up and some of the rarer more debilitating cases and I know Googling things is a bad idea, but my doctors tell me nothing and haven't even checked if I have Hashimoto's.
My question is simply - can you touch an effected area of your body with myxedema and then touch another area? Does that spread it? Is it infectious? Does it help it spread? I don't want to spread it.
I just really need answers. Thank you.
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RainyDae
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I'm genuinely not confident in that all though I keep thinking it's obvious and you're right. But then I hear people say maybe, or 'might though'. And even my doctor said once 'Oh yes it can,' and then took it back. So I just feel really nervous.
Well, your doctor is the last person to ask! Have you not yet understood that doctors know nothing about thyroid conditions? Most of what doctors tell patients, they make up as they go along. You'd be better off with Wikipedia!
Like if I touched my leg when it's all swollen with (possible) myxedema, and then rubbed my face or arm, would it spread?
The answer to that is NO. Because it's not caused by a virus or bacteria. It is internal swelling of the tissues.
I am noticing that and it's shocking. It really is scary that they just don't even understand half of what they talk about in regards to this. The fact I've never been checked for Hashimoto's and even this myxedema.
My dermatologist says it's Gravitational eczema, and my doctor says it's Myxedema. So I don't know which one it is!
But, are you talking about myxedema or prebital myxedema? Not the same thing. Myxedema is another name for hypothyroidism. So, you have been checked for that, because you are hypo. There isn't a test for the other.
Well, as I understand it I was meaning the symptom of mucin under the skin which people seem to refer to as 'myxedema'. mucin + edema.
Pretibial myxedema is that, but on your legs, right? I think I also have some on my cheek since one of my cheeks is not able to be pinched. But no doctor could tell me what it was.
Anyway, it developed in me this really terrible OCD where I felt like if I touched my legs where they're swollen and red---either from statis dermetitis or skin myxedema---then i would spread the same symptom to other parts of my body. And I did the dumb thing of Googling pretrial myxedema and found really bad cases of plaques, disfigurement and I just feel so bad for those people.
And also I felt like I would become like that. So It's been near 6 months of just I can't touch my legs, anything that's touched my legs, etc. It's been hell.
I'm not sure that pretibial myxoedema is mucin, because it mainly affects people with hyperthyroidism. Mucin is usually a problem for people with hypothyroidism - but I could be wrong. However, there isn't a test for it.
Excess mucin can be a problem anywhere in the body for hypos - cheeks, arms, legs, trunk - but it isn't spread by touching. It's not infectious.
I very much doubt your doctor has ever heard of mucin and the problems it can cause for hypos - or that it used to be used to diagnose hypothyroidism. They just don't learn about these things in med school these days.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting.
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
The initial recommended dose is: For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
.....The usual maintenance dose is 100–200 micrograms once daily.
Hey. Thank you for this. It's a lot of information to take in. I'll try to explain.
I was diagnosed with Hypothyroidism around 17. It's now been 9/10 years. I recently asked if I had Hashimoto's or had any tests for that and they seemed to only have primary down in my notes but no Hashimoto's tested for or recorded, which I think is quite odd and negotiable.
I am on 150 of Levothyroxine and have blood tests every 6 months or so. My levels were pretty bad for a few years there because I was young and dumb and uninformed, and my medication gave me headaches and made my hair fall out. So I tried to avoid taking it. When I'd gone months without taking it, my muscles ached and I felt so tired all the time. Since reading about things like myxedema that can either disgure you, damage your brain or kill you, I've been taking my medication every day and trying to be more responsible.
I have a Folic acid deficiency and am often prescribed supplements for a month or two now and again which is odd because I've read folic acid isn't great for myxedema.
I've recently asked my doctor about testing for Hashimoto's so I'm going to be doing that when I go for my next blood test in a week or so and I'll try to request all information or at least someone to go through it with me.
I think you're mixing up three different conditions, all of which could theoretically occur together. Pretibial myxedema is a condition affecting your legs associated with Graves' antibodies. Eczema is a skin condition caused by external or internal allergies AFAIK. And of course, anyone can get an infection from an open wound or even scratching a mosquito bite till it's raw. Infections can spread, but eczema and pretibial myxedema are not infections. Yes they can cover large parts of your body, but not from a contagious method.
If you really do have pretibial myxedema, you should be tested for Graves' antibodies, aka TSH Receptor antibodies or TRab. HTH.
I had an open wound, and then my legs got swollen and red. Doctors mistook it for cellulitis, and then proverbial myxedema due to hypothyroidism, and then a dermatologist diagnosed gravitational ezcema so it was really confusing...
I tried looking there and other sites but I think my question is very... Uh, a question that many would find very obvious and I can't find a straight answer.
Like if I touched my leg when it's all swollen with (possible) myxedema, and then rubbed my face or arm, would it spread?
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Medichecks - Be aware if you pay for venous blood draw at clinic (Superdrug) North East - earliest appointment likely to be 09.30hrs.
Can you have thyroiditis with normal lab results? 
What if I never needed levothyroxine in the first place? Can it be stopped if it shouldn't have been prescribed ?
Can someone help me please (if you can)
