4 years of horrible foot pain, I have Hashimoto Thyroiditis and am on .088 MG of Levothyroxine
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I was diagnosed 14 years ago with Hashimoto disease. At the time I was put on a very low dosage of Levothyroxine. It has been increased a couple of times but I am still only taking .088 MG. 4 years ago I started having horrible bilateral foot pain. It feels like I have lots of little broken bones in my feet. Recently the pain has moved to my Achilles, ankle and lower calf. Initially I went to see an orthopedist who felt like I had a metabolic bone disease. I have seen 3 different endocrinologists, one of which was part of a week long stay at Mayo Clinic in Rochester, MN trying to get some answers. I have been to 2 podiatrists, 2 additional orthopedists, a pain management doctor, an accupuncturist, a holistic doctor and reflexologist. I have had a few stress fractures in my feet during the 4 years but not the entire time. I do not have any now. The main thing I have been told is that I have osteoporosis but osteoporosis does not cause pain. I have done everything that I have been told to do concerning the osteoporosis. I did daily injections of Forteo for 2 years and take Calcium supplements. The reflexologist/massage therapist has helped me get to the point that I can somewhat function but the pain is still there and if I am on my feet too much, it gets bad. I have always been very active so this has caused a drastic lifestyle change. I am 62 but feel 90. Recently I have started seeing things about people who feel like the levothyroxine causes their pain. I am at my wits end and am reaching out for any thoughts or suggestions!
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MtViewCatherine helen43942
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Hello Helen, I was on high doses of levothyroxin for two years. Yes, I have funky broken bones that look like crush injurues, yes, severe bone deterioration, yes, I believe it was caused by levothyroxin. No, I have never had a broken bone prior to taking levothyroxin.
About a year and a half into taking levothyroxin, I broke my foot, it was multiple fractures of the metatarsals and a crush injury. I felt the injury was much worse than it should have been given the impact of a room divider screen hitting my foot. I went to my GP, and three different podiatrists, who couldn't even seem to figure out it was broken.
Long story short... it got so bad I couldn’t walk, I tripped while using crutches and broke it worse. It was blue for motgs, so Ivstayed in bed with it elevated. I’m in California and unless you have a clean (obvious) break, they won’t treat a fracture: instead they wait until it worsens emough to require surgery and pins. I had a bunch of people warn me of this practice, so I went to a private sports doctor DC, who taped it for me. I also went to an amazing PT who did lazer therapy on it, which accellerated the bone healing. This probably saved my foot.
Was bedridden for months... It took 9 months to get to a (in network) specialist. Still couldn’t put weight on it. By then my bones in the entire foot were extremely deteriorated and I was diagnosed (incorrectly, I think) with “chronic regional pain syndrome” and was offered pain medication. I laughed at this diagnosis from an arrogant intern who said he could tell from x-rays, without examining my foot that this was the diagnosis. I walked out, realizing they're more interested in getting people hooked on pain meds and dependent on repeat doctor visits than on helping patients. That was early 2016.
Of course I’d gone out of network and was told by two different sports docs that I needed a cast because it was broken. By that time, I was off the levo. Switched to a glandular...
The weird thing is that my other foot has similar problems even though it wasn't injured. Now in 2018, I broke a finger. No idea how I broke it. It JUST BROKE! It was very similar type of break as the foot- diagonally across the bone, multiple fractures.
The finger seemed to heal ok, but now six months later, I seem to have rebroken it.
Meanwhile its been years since I’ve been able to do any sort of impact exercise, as I’m terrified of damaging my feet worse, so have been trying to strengthen slowly.
This is horrifying. As every time I start to get my body strong enough to do a decent workout, I keep getting more debilitating bone injuries.
Instead of thyroid medications, I switched to essential amino acid complex and phenylalanine. This works better for me than any of the meds and the side effects are minimal.
I should say that my thyroid disease is quite advanced. And the levothyroxin caused a cyst to grow like crazy and it more than doubled in size, appearing to cannibalize one side of my thyroid gland. In addition to the amino acids, I go regularly to acupuncture with a traditional Chinese practitioner.
I’ve been off the levo about two years now and am well enough to try my regular workout- finally!- though, its so rough I’ve only done one so far. I realized I’ll need to tape my feet as I get back to my cardio classes, even though I’m not jumping around.