View Single Post
Old 12-09-2012, 03:22 PM
katycoyote katycoyote is offline
New Member
 
Join Date: Dec 2012
Location: Spirit Lake, Iowa
Posts: 3
10 yr Member
katycoyote katycoyote is offline
New Member
 
Join Date: Dec 2012
Location: Spirit Lake, Iowa
Posts: 3
10 yr Member
Default hypothyroidism undertreated and neuropathy

Quote:
Originally Posted by ashleyk View Post
Does anyone have or know of hypothyroid neuropathy?
I have been on Synthroid for 38 years due to thyroiditis. Over the years, I am sure my doc used only TSH to adjust my synthroid dosage. I have since found out that TSH is not a reliable metric for someone with no thyroid. I believe free T3 and T4 levels are the only way to maintain optimal thyroid health and they should be at mid to high normal.
In Feb. my doc cut my Synthroid back by 20% because my TSH was 0.1. I became very hypothyroid symptomatic including aching feet and leg muscles. It continued to where my feet and legs burn, tingle and ache as in neuropathy. I also have RLS which developed 5 years ago. I have since found out that all these symptoms and RLS can be caused by hypothyroidism. I believe my T3 level has been low for years and maybe is the reason for my neuropathy. I have since raised my synthroid by 10% and added Cytomel, T3, but the symptoms persist. Don't get to see an endochronologist for 6 more weeks!
Does anyone have a similar experience?
John
I am 65, finally diagnosed with hypothyroidism when it totally quit 3 years ago, though I suspect it was slowly failing for some time. First treated with Synthroid which helped a little. Educated myself about there being more important things than my TSH level. Changed to a doc who determined I wasn't converting Synthroid (mostly T4) to the necessary T3 so put me on Cytomel (T3) and pushed it to the limits where I experienced chest complaints (heart is fine) So I read Stop The Thyroid Madness and decided to find a doc who would work with me on switching to Armour thyroid (the way it was treated for years before pharmaceutical companies decided to get their fingers in the pie and convince everyone, including docs, this was the only way to go. Then they tried to put the natural approach (Armour by Forest Labs) out of business, which they nearly succeeded in doing but failed thank goodness. Anyway, I had to educate my young family doc (I don't trust endocrinologists anymore) about Armour, blackmail almost, AND how to titrate the dose up rapidly to equal the Cytomel dose. But it was during all this thyroid experimentation early on that the peripheral neuropathy in my feet began to appear and has worsened to burning and pain in the year since. Went to the neurologist who ruled everything else out and decided it was probably my hypothyroidism that caused it....."but I can't help you." Great. Now I have added all necessary vitamins, including liver cleansing (as I suspect at this age my liver is sluggish too in metabolizing things with all it has been inundated with and my notoriously poor diet and poor appetite and surgeries) and tried acupunction for 3 months (didn't work for me) and all I can say is this sucks. Then pain is getting worse despite starting gabapentin and cymbalta (which makes me very foggy.) The heavily spiked cayenne, Caspian, cream DOES help some (but put it on with vinyl gloves as that stuff does NOT wash off your hands and you don't dare touch your eyes or lips or you'll be sorry) AND treating with an expensive infrared lamp isn't working so I'm going for the wrap around pulsated infrared light device and see if that helps. All l know is there MUsT be some relationship between the hypothyroid and the neuropathy in my case.....and it's no fun and I'm trying like hell to accept the fact that I might have to live with it, or it's advancement and HOPE treating my thyroid up the ying yang (and I can already see it's better and I WILL buy it off the internet by having it sent to another country if my doc won't titrate it high enough....and I plan to tell him that ) with Armour.......think about this Armour is pig's gland. We are most closely related to pigs genetically or we wouldn't be using their parts to repair our hearts. Treating to symptoms relief instead of pleasing a lab report (which hasn't been updated in ten years) is going to be a real piece of work with a young doc who feels he walks a fine line between pleasing patients an learning something new while building a practice good enough to pay off his student loans. Wish me luck as I do all of you. That's my story. Feel free to contact me personally if you need more information.

Retired RN
katycoyote is offline   Reply With QuoteReply With Quote