Possible pretibial myxedema is causing me so much anxiety I zone out for hours.

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Hello. I'll try to cut this short as I can.

I've had problems with my leg for a year. Cellulitis, pancreatitis, edema. I've had a wound that's been scabbed over for 4 months. Seeing the doctor several times I was just told to moisturise it so I did. 1 1/2 weeks ago it burst, and a 4 days ago I saw the doctor and got a dressing and some clarithromycin as I am possibly allergic to penicillin. 

I went to the doctors yesterday. The cellulitis on my left leg has got no better, but no worse. The actual wound looks a bit better. However, the cellulitis now spread to my other leg. The nurses and doctors were baffled as there's no visible entry point and it shouldn't spread on antibiotics. I got 4 doctors in. Eventually one said it could be related to be underactive & ill-managed thyroid function. 

It could be pretibial myxedema. 

At first I was relieved because I don't want a cellulitis infection that isn't responding to anti-biotics, of course. They took a swab and blood test but neither will tell me definitively which it is. 

I came home and looked up pretibial myxedema. Terrible mistake. It's terrifying. It's far worse. 

It's rare in itself. It causes plaques or redness or bumps on the lower legs. But in some rare cases it can spread to other parts of the body. And in rare cases it can become elephantiastic. 

So now I am aware that there is a chance I could become horribly disfigured and/or impaired. However 'rare' it may be isn't a re-assurance, as I was born with a rare brain disease and might have now this other rare disease. 

My anxiety is so bad I can't sleep. I can't focus. I had a panic attack lasting 4 hours last night. I don't want to live like that. Why don't the doctors warn you about this? Even if I don't have this disease this time I know now there is a chance of randomly developing it.

Does anyone know more about this? Can anyone talk to me?


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  • Posted

    Now I have read about Myxedema in general and it sounds even more terrifying. 

    My thyroid has not been well-managed for many years. I am 28, I was diagnosed at 17 and at least for the past 8 years my level have been up and down and usually low. My medication kept giving me headaches and making my hair fall out and other side-effects and sometimes I'd forget to take it for a long time. I never understood how important it was: i'd take all the painful headaches or hair loss over this. 

    Even if I regulate my thyroid better now, will this mean that I am still at risk of Myxedema for all the years it was low? I know all I can do is regulate it as best I can now...

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  • Posted

    Hi PandaCake, pancreatitis causes a whole bunch of gut problems and edema.  The many gut problems can lead to  autoimmune disease.  These are likely the root sources of the symptoms you’re experiencing.

    My experience has been that docs treat each symptom separately and don’t seem to look at or care how problems are related. They just treat them symptomatic problem, with little effectiveness usually.

    There are several things you can try if you aren't getting results from your regular doctor.

    Go to an acupuncturist. Ive had extremely good results managing symptoms from chronic pancreatitis, especially the edema, by going to acupuncture regularly. Relieving the edema may help with the concerning symptoms you’re experiencing.

    Holistic doctors, and Naturopaths should be good at treating this sort of illness. Unfortunately, these sorts if practitioners are often difficult to find or are not covered by insurance... 

    Finally, there are many herbs that can be helpful for mild edema, and orhers that work amazingly for infection. You can easily buy online. 

    My mother was on the merry-go-round of UTI-antibiotics-fungal infection-antifungal meds... for a long time before I finally said enough, did some research and tried some herbs. It took a while to get the dose right and I rotate herbs as needed. The herbs have little to no side effects, so  I can use them any time for her.

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    • Posted

      Hi PandaCake, you’ll basically want took at all of the symptoms of each problem and sort out which are related and what the core problem is. 

      Seems like you’ll want to start with healing your immune system, removing immune triggers, etc. 

      Look at the timing if the thyroid medication and whether the peniculitis was before or after, or worsened within a few weeks if the thyroid (or other) medication. Synthetic thyroid medications are known to cause Lupis, Fibromialgya and even hypothyroid disease- all autoimmune. It wouldn't be a stretch for thyroid medication to cause penniculitis. 

      I’ve seen many posts where pancreatitis is connected to thyroid disease, so although it was a typing error, it didn't seem unusual. Oh well.

      Hope you’re able to sort it out.

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    • Posted

      Thank you. I never knew those things could be connected. 

      I've had it for 10 years. Well, had it diagnosed for 10 years. For the first few I was taking my meds pretty well but for probably 7 years or 8 my TSH has been high and my actual thyroid hormones have been low. So I'm worried about myxedema because of that, and because the doctor suggested it might be what they thought the 'cellulitis' was. 

      All I can do is make sure my thyroid is regulated properly now even if that means getting migranes, paniculitis, having all my hair fall out... 

      Because myxedema and pretibial myxedema seem very scary to me. With risk of becoming impaired or disfigured or losing brain functionality over time. 

      Do you know about this? Will proper regulation now help me at all or is it too late due to years of low thyroid hormone?

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    • Posted

      Hi PandaCake, i’m probably not the best person to ask. I went undiagnosed for decades even after a large cyst emerged. I did manage insdvertently to get my thyroud disease into remission for a decade. 

      After that, the thyroid disease returned with a vengeance- i suspect  due to environmental toxicity. It was only then, that I was finally diagnosed. 

      I took meds, had tobs if anxiety from them, and tons of other sude effects.   I believed that there was no other solution.

      Eventually my health had deteriorated so badly to to side effects of the medication, that Ibwas bedridden and my cyst had grown like crazy. Tirns out the meds cause thyroid disease. I also had a lot of nonspecific autpimmune disease, fibromialgya, severe arthritis and advanced osteoperosis.  Honestly, the meds nearly killed me! 

      I went off the synthetic and used a bovine glandular. Tgat hot me to tge point where I coukd atart to think straight againg. But then there was a formulation change and I was getting very ill from it. 

      Do I researched more and put my biochemistry background to work. Eventually I came up with sonething I thought should work, and it does! Yay! I take essential amino acid compkex and phenylalanine.  It eorks better tgan any of the fozen meds I tried! Little to no side effects. 

      I have had slow and steady improvement since going off  the meds and using the amino acids.

      I figure, i gave advsnced thyroid disease. If the smino scids work fir me, they should work fir a lot of otger people!

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    • Posted

      Oh heck. I'm so sorry you've had such problems with your meds. :c I know the Levothyroxine makes me feel anxious as hell, have headaches, lose hair, feel shaky etc. It's just... better than the alternatives, I suppose.

      I'm glad you found something that works for you.

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    • Posted

      Thanks Panda. Ha ha ha. Anxious as hell, headaches, hairloss... better than the alternatives of hypothroid symptoms- like anxiety, hairloss, headaches...

      Really, I thinks its a placebo with side effects. Oh well.

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    • Posted

      Well, the symptoms of hypothyroidism I'm afraid of are far worse. Myxedema or pretibial myxedema can lead to disfigurement, impairment or with myxedema, confusion and decreased brain function. That's what I'm afraid of.

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