Myexedema

[sallypg]

Does anyone else suffer from this horrible swelling? I am obviously very hypo if I have this. Only noticed it in the past month or so. I thought i had just put on weight but now realise its an all over puffiness.

It is dangerous? Rsther scary.

[puncturedbicycle]

I was supposedly well-medcated on levo and still v swollen, so I think it can be one of those symptoms which lingers when you're not entirely well on levo alone (assuming that you're on meds). Have you asked for a printout of your test results and posted results and ranges here? Would be helpful to see what's going on.

That swelling is horrible and exhausting and you have my sympathy. I was also v constipated and my hair was thin even though both my t3 and t4 levels were v good (toward the top of the range). Some t3 really helped.

[melissaaggie98 in reply to puncturedbicycle]

I also am suffering from whole-body myxedema and was wondering how long yours took to go away? I am currently on 2 grains of NDT and almost 3 grains of T3. I can tell from my symptoms that I am still undermedicated, but I'm feeling better and feel like I will hit my ideal dose soon. I've gained 25 pounds so far and I think about 20 of it is myxedema. Please tell me how quickly this can go away...I'm desperate to lose this stuff!

[puncturedbicycle in reply to melissaaggie98]

Oh bless you, but that is all good news! You're already on meds and non-levo meds at that, now all you have to do is tweak it and keep your nutrients good (b12, d, folate, iron).

Have you seen your test results? It would help to post them here.

Within a week on a tiny dose of t3 (I was worried it would exacerbate anxiety so I was breaking the pills in half), I had raised the dose to 10 and although I could be remembering this incorrectly, I think it was a day or two later I looked at myself in the mirror and tried to figure out why I looked so different. I could tell from the fit of my trousers that I had lost weight, and my features were so much clearer. The water weight (in my experience) can go all at once, and when you're feeling better (ie able to be more active) any other weight gain may also resolve on its own.

Not to trivialise 25lbs, but you're prob right and at least half of it is fluid, which means you should be able to shift the lot with relative ease when your meds are right. Some people here gain stone upon stone, which can be harder to resolve. I consider myself v lucky that I've only gone up a dress size or so. But it's irritating nonetheless.

[melissaaggie98 in reply to puncturedbicycle]

Thanks so much for your reply and for the hope that this may resolve itself sooner than later. I just took some new blood tests about a week ago which haven't come back yet. Once I receive them, I'll be sure to post. Thanks again and have a great day!

[Kileatingemini in reply to melissaaggie98]

Melissa can you PM me, I am on NDT and whilst it has improved things I am looking at starting T3 also and would be interested to talk to you.

[Clutter in reply to Kileatingemini]

Kileatingemini,

This thread is over 2 years old so you may not get a reply. You can write your own post by clicking on the green write a post link top right of page.

[sallypg in reply to puncturedbicycle]

Ive been in t3 only and my last results showed t3 8.9! I was still hypo! Still am but have since added t4 back in and reducing t3 drastically because i think it was too hard on my adrenals. My edema is all over my body. My skin feels soft and pulpy! Yuk!

[jellynpain]

I suffer everyday eye puffiness, on/off thigh swelling. At times I suffer very bad feet & ankle swelling, generally when warmer. Also clavical soft swelling (I think that's drainage) Is this the same thing?

X

[sallypg in reply to jellynpain]

Hi sorry, where or what is the clavicle.?

[Barb1949]

I was diagnosed with Myxoedema 23 yrs ago and still have full body swelling. My face and down my trunk is kind of squidgy but my legs and feet are very hard with the swelling. Since I joined this forum and learned more I am now trying to get better treatment, and am waiting for an endo apptment. I went from size 14 to 32 over the years and could not understand why I couldn't lose the weight. My gp at the time said as soon ass I was settled on a regular dose of levo the weight would come off!! I have been struggling for the past six years and have slowly managed to get down to a size 22 but have been unable to shift any more. I am told when I get my meds sorted properly the fluid should clear and I am expecting to lose a lot of weight. (Well I can always hope)

[sallypg in reply to Barb1949]

Taken so long to get the meds sorted? That sounds scary within itself. Sorry you have suffered for so long. The squdginess is horrid!

[Stormx]

Yh I get it in my face, legs and hands and oh my neck, I noticed when I could not fit into my own shoes etc, or my necklaces became very tight!!!!

horrible just hotrrible

[sallypg in reply to Stormx]

It is a symptom of being hypo. If you have it then meds are not working and need tweaking!

[Lionyx2006]

Myxedema almost killed me in 2007. My doctor said had my dose not been increased when it was, I would've died in three weeks. So yes, myxedema is dangerous.

[sallypg in reply to Lionyx2006]

Sounds awful Lion! Glad you are ok

[Kileatingemini]

I also experience this, my clothes will fit fine first thing in the morning and then by 4pm everything is too tight. I have started taking ACV, Slippery elm and Milk Thistle recently and not experienced it so much but I can totally relate to what you are describing. I also potentially have Lyme disease and overall inflammation can be a symptom, just awaiting blood results.