Hello. It’s possible my thyroid meds have nothing to do with my ongoing illness, but because of the timing, I want to ask.
I had been taking just Naturethroid for 7 years. My levels went low, was feeling tired but I couldn’t tolerate higher doses of NDT so my doctor cut the NDT slowly and slowly added generic Levothyroxine, which I had never taken before. Within a few days my skin was dry and prickly feeling and I got a very itchy rash on my neck, stomach and chest. Soon after, I was waking up with swollen eyes, and eyes a bit filmy, and phlegm. Some here suggested I was allergic to a filler. Switched to Synthroid and it was worse. At the same time I started to get nerve pain in my hands and a prickly/hot nerve pain in my back just to the right of my spine. Switched to Levoxl and things got better but the rashes started developing these itchy open lesion type things that are odd. Symptoms would get better and then worse.
I developed bad eczema I had never had before on my face, and around and deep inside my ears. My skin continues to get that papery dry and prickly feeling, especially right out of the shower. No cream would help, even prescription creams.
The nerve pain continued to get worse, my hands extremely painful to the point of not being able to type or text, veins bulging, and then started in my feet and calves. The several inch diameter of prickly/hot pain on my back grew larger.
We increased doses, did more NDT, less, more Levo, all the combos. Went all the way up to 95% of the range both T3 and T4. Experimented all around the range. All symptoms seemed worse the more Levo I took.
So I eventually and gradually went off it and back to my NDT dose that I could tolerate. For some reason now this dose is fine with split dosing which I wasn’t doing before. The only symptom that got somewhat better after discontinuing Levo was the dry skin all over but everything else continued to get worse. My back sometimes feels like it’s on fire and being poked with 1000 needles, the whole upper back. Nerve pain is worse and I developed electrical shooting pains down my body, and pinching feelings in muscles in the backs of my thighs and backs of my arms.
I get lesions and what looks like cuts that appear all over. My hands swell up. I developed blotchy red/white hands with tingly/prickling feeling. The skin around my nails becomes red and inflamed, with tons of hangnails and cuts/lesions on the skin around the nails. The cuts and lesions appear everywhere not from dry skin (not cracking). It’s like getting large paper cuts and little gashes on legs, feet, forearms, chest, back.
I get bouts of crushing fatigue. I’ve had a light dry cough and tight chest for 9 months. No Covid. MS has been ruled out and the neurologist does not think my nerve pain is neurological, but rather nerve inflammation. My thyroid levels are right in the middle where I have always felt best. I get bouts of physical anxiety (rapid breathing, adrenaline, Etc).
All these things come and go. It may have nothing to do with taking Levo or my thyroid but the issues only started once I started Levo. I never had a single one of these issues before EXCEPT for the prickly back pain which started lightly a year before. I was shocked that the symptoms didn’t go away once I stopped the medication. I haven’t taken Levo in 7 months. I was also exposed to large amounts of (supposedly benign) mold in my apartment that was recently remediated but was there for a long time. Doctor is exploring this as well. I have been to 6 specialists. All tests come back normal.
I keep getting worse and I had to drop most of my classes. If it weren’t for working at home during the pandemic I would like not be able to work. Antihistamines help somewhat. I tested negative for all allergies.
I had rules out Levo or thyroid as a cause for all this but now that all tests, including Lyme, autoimmune (I don’t have autoimmune thyroid, just low levels), various viruses, allergy, etc have come back negative. My mycotoxin panel came back somewhat high for aflatoxins and gliotoxin, so perhaps this is mold related. The time of with starting Levo and the rapid onset of so many of these symptoms at once is suspicious though.
Thought I’d see what you all think. Thank you for reading this long post!
but it's what I have to hand. He posited that rare cases of anaphylactic shock in response to high dose B12 treatment may be due to reduced protein (transcobalamin II) binding capacity, which often occurs in pernicious anaemia. He went on to say that this severe response to B12 may not be permanent, but cutaneous sensitivity may continue. He thought it unlikely that B12 itself could be an antigen.
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