Does anyone else have lingering myxedema after getting their FREE levels up in the range ? This isn't just swollen hands and feet though I have that too, it's that "subcutaneious jelly-like material" deposited under the skin that is supposed to go into the cells but can't when thyroid T3 is too low. It looks like full-body cellulite. I mean, most people don't get cellulite on their CALVES, right ? I had 5% body fat my whole life until this thyroid problem and I ate everything, though not to excess.
The ascites and edema and a lot of the cellulite-looking stuff went away rapidly (like in 3 weeks) when I first went on combination T4-T3, but returned after endocrinologists repeatedly lowered my medication because of my low TSH...and raised and lowered and raised and lowered, etc. I'm afraid that they permanently wrecked my metabolism by doing that. I HAVE read that myxedema (NOT the coma) sometimes just comes and stays and the doctors don't know why.
Is there any protocol for this that I am unaware of ? My blood pressure is good at 124/72 or lower, my sodium levels and heart are fine, my cholesterol is 164. I don't eat much, but what I do is balanced and I don't use table salt or cook with a lot of salt and I rarely drink alcohol.
My recent FREE T4 is 2.0 (.8 - 2.7) Quest labs
FREE T3 is 4.1 (2.3 - 4.2)
VIT D is 53 (30 - 100 ) take 10,000 IU a day supplement
VITs A and B12 in good shape too
Any less T3 (I titrate at .5mcg, the least amount) and I have an immediate return of hypo symptoms, especially deep depression. I have no hyper symptoms at all. My only other symptom at this point is a rash, actually 2 kinds of which I have found similar pictures online relating to hypothyroid, and my skin remains very dry.
"The term myxedema has been applied to several clinical entities and is often used interchangeably with severe hypothyroidism, the common clinical condition in which the thyroid gland produces abnormally low levels of hormones.
Myxedema also refers to 2 different dermatologic conditions. Pretibial myxedema, an uncommon skin disorder, occurs not in cases of hypothyroidism but in hyperthyroid states, including, most commonly, Graves disease. The term pretibial is somewhat misleading, because the condition can affect other areas of the body and could more accurately be called localized dermopathy.
The other skin condition, called myxedema, occurs in severe, long-standing hypothyroid states and is caused by the deposition of mucopolysaccharides within the dermis."
Your labs don't indicate, in any way, that you are still hypo; is it possible that you are experiencing the pretibial myexedema?
I, sometimes, experience severe edema, for no obvious reason. It can be in my face, fingers, legs or feet...... sometimes it stays for weeks, sometimes only a day or two. Occasionally, it can be linked to something I ate (too much salt), but usually, not. My edema is often pitting, but not always.
I don't know Barb. I've done tons of research on it myself and yes, looked at the photographs before as well. In fact I've read several papers that state that pretibial can be related to hypo as well as to Graves. It's very mysterious.The cellulite stuff I have seems to be the "mucopolysacchirides within the dermis" and my skin is still so dry it hurts. It's just very strange because I agree, my labs wouldn't indicate hypo at this time, in fact most would probably find them a little high although lower, for me, gave symptoms. I skootched them up in tiny increments over a long period of blood tests every 6 weeks until I got most of the symptoms to be better and my hair stopped falling out in hunks. I have also read that for those who suffer from depression with hypo, there is sometimes a need for a greater amount of T3 than usual. It has something to do with the way T3 is metabolized in the brain tissue.
My edema is non-pitting, especially around ankles and feet and in my legs.None of my rings will fit. Before I was on medication, my blood pressure went up to 196/98 and my feet were so swollen they wouldn't fit in my shoes...my ankles were non-existent. Pictures of my face from that time look just like the old-timey ones that are used to illustrate hypo in medical texts and I even had to have an operation on my eye because the drooping and swelling was affecting my peripheral vision....of course I could not be hypo because of my low TSH, right ? Wrong.
My mother died of what they said was Alzheimer's. This was before I was really sick (but had some symptoms of thyroid dysfunction) but after my sister was diagnosed with Hashimoto's. I thought at the time that my Mom might have a thyroid problem and asked my Dad to be sure she was tested. Of course they only tested TSH and said she was fine. The more research I do on my own condition, the more convinced I am that she died of untreated hypothyroidism and myxedema. She had Raynaud's to begin with and DePuytren's contracture which are associated with the general matrix of autoimmune conditions and there are other types of autoimmune syndromes in the family too. It didn't help that she was left on Tamoxifin for almost 8 years....whoops, doctors....so the low estrogen didn't help her. But she was freezing cold all the time, became depressed (not like her at all), skin super dry, hair fell out including the definitive outer 1/3 of eyebrows, had the full-body cellulite that may be the "mucopolysacchirides" and unusual weight gain for the amount she ate, osteoporosis, then brain fog, disorientation, fatigue, hallucinations and psychosis, radical weight loss, and finally death. What really makes me suspicious though are the photographs I saw of pretibial myxedema where the whole leg below the calf was purple and hard and scaly.....exactly what happened to my Mom, and you have to be pretty far gone to get that. I kept asking her doctors what it was and they didn't have a clue. So I suspect there's some genetic predisposition or anomaly in our gene pool, and it must involve some conversion problem because TSH doesn't seem to be involved. It even took my sister a long time before she had a definitive Hashi's diagnosis...first they thought it was rheumatoid arthritis or lupus or gluten allergy. Who knows. This is such a mysterious disease. I still occasionally get those "Oprah bumps" on my cheekbones under my eyes...stays a few days and then goes away.
I'm so sorry you get edema too. Very strange. Mine also does not seem associated with my diet. I just keep hoping that if we keep putting our various symptoms up here and we all keep doing research, we can help each other figure it out. Thanks for trying to help.
If you haven't checked out the petition to endocrinologists and their professional organizations on Change.org (just type in 'thyroid"), you might want to look at it. I think the mission statement is excellent and I'm glad people are finally banding together across the world to speak out and demand better medical treatment.
Hi: I was just wondering if you had found any relief to your swelling and cellulite symptoms?? I was recently diagnosed with hypothyroidism and I have myxedma on my legs and upper arm area (along with insane weight gain, hair loss, skin rash, dry skin, etc. etc. etc!!) This disease really does a number on your physical body, that's for sure. I think I've been dealing with these symptoms gradually for almost two years now. Like I said I was only recently diagnosed and have been on meds (Armour) for only a few weeks but I am just curious when/if you found relief for your symptoms. My vitamin D and iron is low and a few of my hormones are out of range so I'm taking supplements for those and my doctor has me on a low-carb diet. I know I have a lot of internal healing to do but I just hate feeling like I have no control over my body, in terms of weight gain and body composition. ...Anyways I hope you're feeling well and Thanks so much for any insight you can provide!
I have graves disease and my cheeks under my eyes have been swollen and my face looks so puffed up for over three months now I am on 100iu Thyroxin for more than 8 years now. I have recently done my T3, T4, and Tsh and my endocrinologist says my results are normal. I have the puffness on my face!!! Please someone, how can I bring this down? HELP!!!
This is a very old thread. It would be much better if you post your own thread, listing your comments/questions. That way, your own situation would get the attention it deserves.
You can start a new thread by clicking the orange "Post a Question" button at the top of this page, type your questions/comments, then click the green "Post a Comment" button.
Since you have Graves Disease, did you have thyroidectomy that caused you to be hypo? When you post your thread, be sure to post the results of your T3, T4 and TSH and specify whether they are Free or Total. Be sure to include reference ranges, which vary lab to lab and have to come from your own report.
Any idea how to treat the swelling? I have the same issue. One day I can wear a size 6 pants 2 days later I can't close size 8 pants. It makes me really depressed because I am so uncomfortable. My body feels like sausage stuffed into casings that are too tight. :( If I only worked from home I wouldn't cry on the days i can't fit into my clothes. i would just put sweats on.
As noted above, you have attached to a very old thread. Your situation would get much more attention if you post your own thread, listing your symptoms.
As for the swelling, I still get it, and like you, one day I can fit into a certain size pants, the next I feel like a blimp. Since I'm retired, I get to wear my "fat pants" (aka sweats) whenever I want/need to. LOL
I do take dandelion capsules every day and I drink dandelion tea.... that helps about as much as anything else, but doesn't completely get rid of the swelling. I also find that exercise helps considerably.
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