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Serena11 10-06-2011 12:19 AM

Hypothyroid neuropathy
I have Hashimoto's hypothyroid and I have small fiber neuropathy. My doctor says the neuropathy is not from the Hashimoto's, but I read otherwise. I don't have any other medical condition that could cause the neuropathy. Does anyone here have a hypothyroid neuropathy or know anything about this? I am taking gabapentin for the pain and levothyroxin for the thyroid. Is there any cure?

Leo41 10-06-2011 04:16 AM

How does your doctor explain the neuropathy? Have you shared what you've read with the doctor?

I ask because I've read things on the internet that I've shared with my endo (I, too, have Hashi's), and he sometimes affirms what I've read, but just as frequently, he explains why it's incorrect.

I find that working with my doctors is the best solution to medical issues.

Serena11 10-07-2011 12:37 AM

They just say it's idiopathic, i.e. unexplained origin. Apparently a lot of neuropathies are. So it's pretty frustrating. It just seems to me that it could be related to my hashi's because it started soon after I was diagnosed. I was just wondering if anyone out there knows anything about this and if there's any treatment other than taking replacement hormone.

girondet 10-07-2011 09:40 AM

Diabetics often take alpha lipoic acid and evening primrose oil to help with neuropathy and they do claim it helps. I have Hashi's too, and I have impaired glucose tolerance and have had neuropathy in the past. Normalizing blood sugars is the best thing for helping reverse the neuropathy.

I did try the alpha lipoic acid for a while, but I had burning pee when I used it so had to stop. Never heard anyone else have this, but I confirmed it by trying again. It's a good antioxidant in general I've read, and you can get it at health food stores that sell supplements.

Try googling it and see what you find out. It's often recommended for diabetic neuropathy and it's said it not only stops the progression, but reverses the condition
somewhat. By the way, as nerves grow back they also cause a similar pain for a while.

Serena11 10-08-2011 12:36 AM

I got some alpha lipoic acid tablets and will try them. I don't have diabetes, but maybe they will help anyways, who knows. Do you know how long you have to take them to get results?

girondet 10-08-2011 06:46 AM

I believe it takes many months using the ALA, but you should start feeling a difference within weeks maybe. It probably depends on how extensive the neuropathy is.

I had some surgery in which nerves were cut and do know that nerves can regenerate, and it can be painful at times while they're doing so, but you should also start having more feeling, less numbness as they regenerate. Exercise and massage may also help.

I too have read that neuropathy can come with Hashi's. How much ALA are you planning to take?

I haven't heard of Metanx, but will look it up. Thanks.

girondet 10-08-2011 07:00 AM

Ok, it looks like Metanx is prescription form of extra high dosage B vitamins. I take extra B complex myself, as I think some of us don't absorb them well. Especially people with autoimmune diseases like Hashi's and while I don't have diabetes yet, I do have high antibodies for type 1 and pernicious anemia, a B12 deficiency disease runs in my family.

Not eating grains has helped me a lot with Hashi's symptoms in general. If you're eating low carb you're probably not eating them anyway.

Serena11 10-09-2011 12:33 AM

Thanks for your input, Girondet. The ala I got is 600 mg. and I think it suggests 2 a day. I took one and got stomach discomfort. So maybe I will try half a dose to see if I can get used to it. I also take a high B vitamin pill that is advertised to help neuropathy, but it didn't really help. But I am still taking it anyhow, just in case. I think grains might be a problem, too, so I try and stay away from them most of the time, esp. wheat.

Sorry to hear that you had nerves that got cut, that must have really been painful! I hope it has healed by now. :console:

girondet 10-09-2011 07:23 AM

Working up gradually is probably a very good thing. I hope you can tolerate the ALA and that it helps you.

Thanks for the kind wishes. I am still healing, but confident I'll eventually get back to normal or pretty close. The surgery was in mid-June....so....there you go...months for nerves to heal and I've been told I can continue to improve for a year or more.

Emmaline 10-09-2011 07:31 AM

Serena, what do you take for your thyroid?

The reason I'm asking, I had all kinds of neurolgy issues when on Amour. turns out I had to take just T3 alone, and my symptoms went away. Maybe you should have your reverse T3 checked to see if adding some would help.

Some issues I had were:

The whole side of my left thigh was numb
Crawling skin, like a bug was walking on me
Arm/hands falling asleep while sleeping
Fibromyalsia symtoms, stiff sore joints, stiff muscles, pain when walking
When I turned my head, shooting pain spasms that would stop me dead until it passed.

Serena11 10-09-2011 11:54 PM

Wow, that is wild! So did everything go back to normal on just the T3? I really don't know anything about this stuff. I just take levothyroxin. Was on Armour once but it didn't make any difference. I hope you are feeling better.

Emmaline 10-10-2011 03:31 PM

Those of us with Hashi's tend to do better with added T3, or in my case T3 alone. Then yes...my symptoms listed above were gone within a couple of weeks. I was so sick on T4 alone, tolerated Armour but didn't get well.

I also lost 30 of the 55 lb weight gain with out changing my diet. The rest is coming off doing LC.

Serena11 10-10-2011 11:48 PM

Those are great results! How do you get the T3? Did you have to convince your doctor somehow, or is there a way to get it without a prescription?

Emmaline 10-11-2011 04:36 PM

It's prescription only. I had tried so many combinations of thyroid meds, that my Dr was ready to count me out. He thought I had some emotional need to stay sick. He saw my disappointment when I suggested trying T3 only and I left thinking that I would be disabled the rest of my life. He called me a week later and said he reconsidered it and would give it a try. After a few weeks he saw the transformation in me...my muscles started working, no longer inelastic. My weight dropped. I felt alive for the first time in 5 years and vindicated for sticking to my guns. The name brand is Cytomel, usually starting at a low 5mcg dose.

Serena11 10-12-2011 12:08 AM

Thanks, Emmaline--I have my yearly thyroid test coming up in Nov. so I will ask my doctor about the T3. I hope she knows something about it.

Your experience is heartening, I am so glad it worked for you! I hope I can have similar results.

khaki 07-17-2012 02:25 PM

I know this is an old post--but Serena, I wondered if you've had any relief from your neuropathy? I have Hashimotos, have been on treat 15 yrs, but 6 months ago developed terrible burning pain all over. The only abnormal test result was my TSH had gotten up to 9.45. Dr increased my meds, and the TSH has fallen, but I still have the pain. I take levoxyl and cytomel
I too have seen the connection onlie b/t thyroid and neuropathy--but it all says it will resolve w/ treatment. So I'm wondering how much longer...my last TSH rdg was 1.87 (still a bit high for me, but that was in June, so I know it's fallen more by now).
Thanks for your time

Serena11 07-18-2012 01:08 AM

HI, Khaki--

Just saw your post, so funny because I haven't checked the thyroid boards for a long time. I appreciate your input. Sorry to hear you are having the burning pain. It is awful, isn't it! :console:

I wish I knew something about tsh, can't help you there. But I may have found something else out. I have just seen an acupuncturist/herbalist who specializes in working with people who have Hashimoto's and she swears there is a connection between it and gluten intolerance. She said people with Hashi's carry a gene for gluten intolerance and if you have it and have been ingesting gluten you get autoimmune stuff going on, including neurological symptoms. So I am now going gluten free to see if that helps. But she told me it could take up to 6 months. But I could see a difference in maybe 6 weeks.

So you might try going gluten free to see if that helps. Are you taking anything for the pain? I am still on gabapentin (neurontin) and have had to up the dose. Is yours worse in the evening? That's when mine gets bad. And, have you had your blood sugar checked, because the neuropathy is a common sign of diabetes.

Hoping for a cure. :hugs: Let us know how you are doing and I will keep you updated on how things go with the acupuncture.

brandywine12 07-18-2012 04:37 AM

I am on t4 meds only as well . I have had RAI done over 20 years ago. When my levels are too low for my body on the ft4 I have had the awful fibro and neuropathy. I discovered this while trying to figure out why I felt so bad even tho I was on meds. It turned out that I didn't have enough meds to circulate in my body and that I was on generic by Mylan. My pharm, was also mixing manufacturers on me so after 3 whole years of absolute misery, I said NO more generic and I want to increase my meds by .12 mcgs.
You know what , it Was the answer, lost 10 lbs right off the bat , I couldn't lose a stinking oz.I was so sore and stiff after walking on the treadmill (before increase) , that I got depressed and quit .
So , if you could post your labs , and dose,and brand of meds, maybe it is in black and white why ur feeling like you do. just my 2 cents.
I am on .112 mgs. synthroid and convert very well on my own.treadmill is back in full motion after I had been adjusted.No more pain!!!
if you tsh is on the high side you will feel it eventually.

Star73 07-18-2012 05:27 AM

Have you had your B12 level checked? Low B12 levels can cause neuropathy. Sometimes neuropathy can just occur and there are no obvious reasons for it..

ouizoid 07-18-2012 08:13 AM

hey--I am hypo but also have small fiber neuropathy. I have Sjogren's Syndrome, an autoimmune condition that attacks the exocrine glands--you have dry eyes, dry mouth, joint pain, fatigue and a host of other conditions, among them, sfn. You may want to read up on it and ask your doc for a blood test.

inatic 07-18-2012 08:15 AM

id want free t3 testing.. just t4 might not be cutting it.

Serena11 07-19-2012 12:55 AM

There's a book my acupuncturist advised me to read, it's called Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal? by Dr. Datis Kharrazian. It may be out of print but I think it's available used or online. Has anyone read this?

waywardsister 07-26-2012 02:58 PM

I have it - it's very good. You can get it here (hope it's ok to post links):
New Book on Hypothyroidism and Hashimoto's by Datis Kharrazian, DHSc, DC, MS I think you can only get the ebook currently, or an audio version.

Also, Jimmy Moore had him as a guest on his podcast 382: Dr. Datis Kharrazian On Thyroid Problems And Metabolic Syndrome | The Livin La Vida Low-Carb Show

Hope that's helpful :)

lilmiss_understood 08-19-2012 01:15 AM

I had what a nurse named as this same issue. Some letters on my keyboard don't work, sorry. Well, ONE letter, between o and q, and all of my letters and most grammar marks. So if you will excuse some of my odd wording..
I had this issue for years, along with what the endocrinologist referred to as vasculitis. My TSH and all other numbers were in range. After nearly five years, the endo finally increased my TSH. It was considered treated so long as below three. Endo decreased that to between one and decimal five. The increase in medication has caused the vasculitis to go away as well as assisted with the discomfort... understatement there thanks to missing letter!

And yes, if you have Hashi's, there is cross reactivity with gluten.

lilmiss_understood 08-19-2012 01:18 AM

Oh, I will also note that it has only been four week since this increase in medication... So it has resolved very quickly.
And one more thing... I had convinced the doctors at one time to decrease my TSH range to below two. The discomfort and vasculitis did not resolve even with a TSH of just under 2. Just so you all know.

ouizoid 08-19-2012 08:23 AM

vasculitis and small fiber neuropathy and thyroid often equals sjogren's or other autoimmune disease.

khaki 08-23-2012 06:45 PM

I can't believe I am just now seeing this and you were so kind to respond to my post--I guess I forgot to "subscribe" so I never saw the responses until coming back on here tonight to search for more answers!
I tried a new Endo--this one says "there is no science behind cytomel' (I know), and decided to change my dose from T4 112 to 125, and cytomel from 10 to 5. I agreed because my Ft4 is still very low at 0.91. My last TSH was 1.87--but this is what typically happens to me--the cytomel suppresses my TSH, but my Ft4 stays low. So I'm hoping the med adjustment may help. And in 6 years living in Charlotte I have not been able to find ANY dr who will test Ft3--very frustrating.
The more I've read--and there more tests I've had for everything from Lymes to Lupus--the more I do believe the bottom line of this paresthesia for me, is thyroid--at least I pray that's it. And that it will eventually improve.
I tried the neurontin a few times--hesitantly. I just so badly want an answer that I almost don't want to mask it. I have tried multiple supplements. My B12 level was high, so it's not that.

Anyone in Charlotte have a good DR who tests FT3?

Sita 04-13-2013 08:10 PM

Hypothyroid neuropathy
Hello. No cure I know of. I have small fiber neuropathy also. And when I had my (cancerous) thyroid removed, the surgeon said, "Did you know you had Hashimoto's?" Anyway, now taking Synthroid 137 mcg and Tegretol along with some Tramadol. Pain is basically under control but feet are weak and balance is becoming affected. But here's a new idea: we are looking at my cervical spine as a potential contributor. It's got bulging discs and my neurologist is exploring the possibility that it may be causing the neuropathy. I will mention the thyroid to him.

Leo41 04-14-2013 04:55 AM

khaki- I would run from any doctor who said, "There is no science behind Cytomel." I have Hashi's, and problems converting T4 to T3 are characteristic of Hashi's. Cytomel saved my life because when my conversion problem started, I was a basket case with T3 below lab range.

Sita- It's very possible that you need T3 separately (Cytomel) if you had Hashi's. Note above how Hashi's often hinders conversion (which happens outside the thyroid). You're only taking T4, so if you're not converting well, you're not getting enough T3--and it's T3 that's the truly essential hormone.

Many people who have had thyroid removed do fine on just T4 because their bodies convert to T3, so doctors are used to simply prescribing T4 for them. You need to get your T3 level checked to see if that's the problem.

khaki 04-15-2013 02:50 PM

I do prefer to take cytomel, but my problem is that it seems to suppress my TSH and I am still left with very low free T4. I am currently on a 175 levoxyl and 5 mcg cytomel--a hefty dose for my size (5'3", 103 lbs--just for reference as it applies here). My last labs were:
2/4/2013: TSH=0.025 (.3-3.0); FT4=0.79 (.6-1.6); t3 (free NOT done, this is total)=125 (90-178)

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