Hypothyroid Neuropathy?
 

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

Since you are having leg symptoms, I do a magnesium supplement first. Magnesium often corrects RLS symptoms. Low magnesium can impact the thyroid.
Also the minerals zinc and selenium are very important for thyroid functions:

Here is my magnesium thread on how to select a good quality magnesium supplement.
(magnesium oxide is useless and not absorbed).

http://neurotalk.psychcentral.com/thread1138.html

You're right, John--
 

--and you need to make sure you have an endocrinologist who treats to the symptoms, not necessarily to the TSH level.

This situation is more well-known to thyroid oncologists; in such cases when the thyroid is entirely removed due to malignant tumor the TSH is normally kept very low in order to suppress the regrowth of cancer cells. But also in people who've had thyroid ablation/removal for non-cancer reasons, the TSH/pituatary feedback loop is not to be relied upon for med adjustments--T3/T4 levels are better, but not perfect measures either. The real key is energy level, weight gain, and other symptoms such as you've described (and yes, hypothyroidism can result in neuropathy).

Wow talking about looking in the mirror..
 

Hi John,

I am having the exact problem. I have been hypo-thyoid since I was 8 and I am not 48. I also have RSD from a accident to my right arm and have gone through all kinds of treatments for that with some good success. Over the last 2 years I developed a lower back problem that effects my legs and feet after rest, like driving for a distance, getting up after sleep etc. that's when the pain comes in the feet and legs but once I get going I can and do walk up to 2 -3 miles a day. The doctors have always said it was do to the back issue and I have had lower back bi-lateral epidurals with really good success. But I really don't get back pain...But the legs and feet are horrible. Anyway I have just switched to a new endro. and she is great my PCP doctor was managing my synthroid and really screwed me up, reduced my synthroid I gained like 60lbs and then had it. Got with the new endo. after the blood test she raised may synthroid to 175mcg and I have already lost 17 pounds in 2 months but I am also walking and really watching what I eat, I'm not good at things called "diets". But what really interest me is the pain you are having due to low levels in synthrod hormone. I have thought of this a 100 times because I have read research on this topic but in regards to RSD.

If you don't mind what dose of synthroid are you on? My new endo. has stated I almost have no normal thyroid functioning because I have been on synthroid for so long. Kind of what you have been told....Would appreciate any input. I am seeing my endo. in late July and will definitly discuss this with her. Thanks for the post. I feel like wow someone understands what I'm going through...


Thank you so much,

gabbycakes

I was told earlier this year that I have mild neuropathy due to my hypothyroid. I am not on any thyroid meds at this time because, frankly, I don't feel like synthroid does anything for me and when I tried taking just cytomel, I started getting a lot of heart palpatations.

Do anyone know if this is a permanent problem for people with thyroid issues or will it correct itself once the thyroid is under control?

I am researching thyroid dysfunction and peripheral neuropathy. Those with hypo often have low core temperatures. Mine is usually 96.8F.

I see some PhDs believe hypothyroidism can lead to peripheral neuropathy, including:

Norman Latov, MD, PhD, Professor of Neurology
Director, Peripheral Neuropathy Center
Weill College of Medicine
Cornell University, NY

He believes testing should include thyroid function as well as B12 and kidneys. Most of the talk nowadays is about B12.

I was going to get tested for B12. I think now I'll find a local place that does thyroid and kidney testing.

It's a pretty long list of recommended tests. Anyone with idiopathic PN should leave no stone unturned.

"Peripheral neuropathy may be caused by severe, long-term, untreated hypothyroidism."--Todd B. Nippoldt, M.D., endocrinologist, Mayo Clinic

hypothyroidism undertreated and neuropathy
 

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

This thread is very interesting to me as I am also hypothyroid, and I take .175 mg synthroid everyday and an additional half pill once a week. Two years ago I had emergency gall bladder surgery when a stone became stuck in the duct.

I recently read an article about Dr. Mark Starr's treatment of hypothyroidism, Type 2 (which I'd never heard of beforehand). I have a lot of the symptoms mentioned. He also treats patients with dessicated liver. I don't think my endo would be open to change, however. Dr. Starr has a clinic in Phoenix according to this article which was dated December 2008 and appeared in the "Townsend Letter, The Examiner of Alternative Medicine." I don't remember now what I was researching when I ran across it.

I forgot to add an additional comment--Dr. Jonathan Wright, M.D. also suggests Armour thyroid to treat hypothyroidism.

The problem with Cytomel is that is has a very very short half life in the body.

It might be possible to get it from a compounding pharmacy who will compound it into a sustained release form. You might have better results then without raising doses so high.

Also some compounding pharmacies have natural animal gland product as well.

So check your area to see if one can accommodate you this way.

T4 is converted with zinc and selenium. Being low on either one will reduce this conversion to T3 in tissues.

katycoyote,

Your story is pretty much my story. I too went to the site stopthethyroidmaddness.com and found it to be EXCEPTIONAL when it comes to information about thyroid.

I am on Nature-throid, the desicated meds. My TSH was a 10.8 and came down to a 2.5 (or near that i cant remember exact at this moment). I am so very happy I fought hard to use desicated thyroid meds. It came down like that and I am only on 1/2 grain (broken up to 2 times a day).

However, as you said, I still have neuropothy in my feet. However, the numb spot on the back of my heal is definately getting better, almost all feeling has returned. BUT I would rather have the numb spot than this horrid burning.

Benfotiamine helps me the most.

Mrs. D, I started on cytomel a week ago. Please clarify for me your statement : "compounding pharmacy who will compound it into a sustained release form ", does it mean a pharmacy will prepare the formula for you? Does this require a special prescription from a doctor?
Thank you.

Yes, it would require a special prescription.

However, the way T3 works, it would only confer a small advantage. T3 is quickly absorbed into tissues. It is not protein bound and carried around for a longer time period like T4 is.

T4 is designed biologically thru evolution to be a "backup" and standby, as part of the biofeedback process.

Too much T3, will over stimulate tissues over time, and lead to side effects, like bone loss, and cardiac stimulation. Too much thyroid is a factor in osteoporosis.

A sustained release form of T3, would slow the absorption down a little each day. But it too is not perfect. I don't think any of our thyroid treatments are "perfect" yet.
http://www.drugs.com/pro/cytomel.html

Have you tried desicated natural thyroid hormone??

In my opinion, it is the best option out there...thats just my opinion.

Thank you MRs.D. I went to my local pharmacy, unfortunately, they do not do compounding.

My TSH has gone haywired. Never did my T3 has gone out of range, till recently even after the total thyroidectomy. I am not sure if this abnormality in my thyroid function is causing the flare ups of my neuropathy (if not the usual pain cannot be considered as flare-ups).

I am interested to know if the TSH, T3 and T4 are back to the normal levels, can I go back to just taking Synthroid without Cytomel? I am trying to minimize my medications to protect the liver/kidney.

Well, I would expect T3 to go away when you have the total gland removed. The thyroid makes it. And it does not get much into the blood when you convert it in the tissues.

From what I learned, it is formed right where it is needed only.

I have read that taking your pulse regularly with T3, and also your morning temperature may help reveal if your dose is too low or too high. Increased heart rate is one sign of too much.

Only special compounding pharmacies do this ...and maybe not even many of them, either. You have to find those either online, or call around locally.

This particular topic appears on the net. I'll send you a link to it, in PM.

I hope you meant dessicated thyroid?
 

I hope you meant dessicated thyroid (pig's thyroid gland.) I finally got on a high enough dose of Armour thyroid that I am much improved.

Katycoyote,

If you don't mind me asking, how much are you taking?? I am on a half grain, split into twice a day, of the nature throid. I feel like I need to up my does. My numbers were all within normal ranges but it's been 4 months or more since I did blood work.

Im thinking about checking it again but I know it will be a battle to get my dr to up my dosage. :(