Does anyone have issues with peripheral neuropa... - Thyroid UK

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Does anyone have issues with peripheral neuropathy? Can this be caused by being hypothyroid?

jjyankee profile image
17 Replies

Good morning from the U.S.- I’ve had carpal tunnel for years, but in the last several months I’ve started to have pins and needles , and burning sensations in my feet too- I’m also having random burning sensations in my legs legs and arms- all much worse at night.

I’ve had RLS since I was a kid but this is different. I’m planning on calling my doc about being tested for diabetes but wondered if this could be related to my currently poor thyroid ranges- my TSH is currently 10 and both t3 and t4 are at bottom of range. I’ve read that this could be caused by swelling around nerves that can take place when one is hypothyroid .Does anybody have these symptoms from something other than diabetes? I don’t feel like I have diabetes. Thanks so much for reading this-

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jjyankee
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SeasideSusie profile image
SeasideSusieRemembering

jjyankee

Are you being treated for your hypothyroidism? You're a very long way from being optimally treated.

Pins and needles, restless legs, can be signs of B12 deficiency, I would get B12 tested. Serum B12 only gives the total amount of B12, Active B12 shows what's available for the cells to use.

Signs and symptoms of B12 deficiency here b12deficiency.info/signs-an...

jjyankee profile image
jjyankee in reply toSeasideSusie

Yes, I am Being treated- I am slowly raising dose and being tested every 6 weeks. My thyroid crashed last spring and I have struggling to stabilize since then. I Had b 12 tested a year ago and it was fine- I do take a multivitamin and a basic B complex along with other supplements. I’ve had iron panel, cortisol, vitamin D, and iodine all tested. Everything except thyroid ranges look fine.

SeasideSusie profile image
SeasideSusieRemembering in reply tojjyankee

We get a lot of members telling us that results are "fine" or "OK" or "normal", but that doesn't mean they are optimal, and we Hypos need optimal levels. We always ask to see results with reference ranges and then we can see if their levels are optimal.

Also, which B12 test - Serum or Active? You can have a good serum B12 result but still be deficient if the B12 isn't reaching the cells. Did you check the signs and symptoms of B12 deficiency I linked to?

Multivitamins are generally a waste of time. They tend to contain too little of anything to help any low levels, they usually contain the cheapest and least absorbable active ingredients, and often contain things we shouldn't take unless tested and found to be deficient - in particular iodine, calcium and iron. If yours contains iron then that will affect the absorption of all the other vitamins, iron needs to be taken at least 2 hours away from any other supplements and medication (some medication 4 hours, thyroid meds being one of those).

jjyankee profile image
jjyankee in reply toSeasideSusie

Not sure if test was serum or active but I do have an excellent doctor who I think would know what test is best- he is never hesitant to do any test he deems important or ones I ask him to do- I am very fortunate.

I am incredibly particular about vitamins I take. I only take methylated B vitamins and best forms of all others- there is no iron in my muIti-vitamin . Also, I do wait several hours between thyroid meds and vitamins. I did read list you sent and other than numbness/tingling and a few other symptoms that could be caused by low thyroid or something else- I don't think that low B12 is my issue but I will ask my doc to do an active B 12 test again as its been a while since last test. Thanks so much for taking the time to respond.

shaws profile image
shawsAdministrator in reply tojjyankee

This is a list of symptoms, 'carpal' being one of the many. I think you may find you've more than one 'symptom'.

thyroiduk.org.uk/tuk/about_...

The aim of taking thyroid hormone replacements is to 'relieve' clinical symptoms.

Doctors should at least test, now and then especially if we're complaining despite taking levo. Test the Free T4 and Free T3 as both should be towards the upper part of the ranges. The aim is a TSH of 1 or lower - not anywhere in the range.

We begin on 50mcg of levothyroxine (an inactive hormone) it has to convert to the Active Hormone, i.e. liothyronine also called T3. T3 is required in our millions of T3 receptor cells so we must take sufficient T4 to convert to T3. We should have an increase of 25mcg of levo every six weeks after a blood test. Vitamins/minerals should also be optimal too. i.e. B12, Vit D, iron, ferritin and folate.

jjyankee profile image
jjyankee in reply toshaws

Thanks for your response- I have tests done every 6-8 weeks. TSH, ft3 and f t4 are always tested- Vitamins have also been tested- so has cortisol-

I was doing okay for several years then I crashed- I think it was due to a combination of quitting smoking, losing 20 pounds, and being on a calorie deficit for many months. Other than the nerve stuff and inconsistent energy, I am actually starting to "feel" better even though my test results are awful- they just aren't as awful : )

In terms of medication I think I've found a winning combo but need to keep gradually increasing dose- I am very sensitive to all thyroid meds so I do it very slowly (12.5 mcg at a time). Currently I'm taking 50 levo with 1/2 grain of Nature thyroid- so I guess that's equal to about 100mcg of t4 or about 68 mcg t4 and 4.5 mcg of t3. At least the way I understand it-

The last book I read, "The Functional Approach to Treating Hypothyroidism" made complete sense to me- all the other protocols I've tried were much too high in t3 for me personally. Thanks again for weighing in.

SlowDragon profile image
SlowDragonAdministrator in reply tojjyankee

Do you have Hashimoto's diagnosed by high TPO or TG thyroid antibodies

Quitting smoking can often destabilise thyroid disease

Many people get initially diagnosed within 2 years of quitting smoking

verywellhealth.com/cigarett...

Getting vitamins optimal is essential

If you have Hashimoto's then it's usually recommended to avoid iodine which is in most multivitamins

drknews.com/iodine-and-hash...

jjyankee profile image
jjyankee in reply toSlowDragon

Yes I have Hashimotos and did read that quitting smoking can have that effect- Smoking- being a stimulant also can mask some thyroid symptoms-

My multi does contain iodine- I have read so many contradictory things about iodine . The multi I take is “Myer’s way “ created by Dr. Amy Myers for hypothyroid/ adrenal fatigue patients. She ihas hashis herself. I take 1/2 of recommended dose along with other specific supplements. I will read the link you sent but I read so much contradictory ideas concerning thyroid treatment that it drives me crazy-

jjyankee profile image
jjyankee in reply tojjyankee

His argument makes sense but so do others I’ve read that promote iodine- the dose I’m getting is very small and I don’t eat iodized salt - thank you for the information and taking the time to comment.

I have had adverse reactions to various supplements I’ve tried - including multi vitamins- but have not with this one.

SlowDragon profile image
SlowDragonAdministrator in reply tojjyankee

Amy Myers had Graves.

Both Graves and Hashimoto's often respond well to strictly gluten free diet

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

humanbean profile image
humanbean

A common cause of restless legs is low iron and/or ferritin. Get an iron panel done, and also a Complete Blood Count.

An iron panel consists of iron, ferritin, transferrin saturation %, and TIBC. The first three are the most important, TIBC is just for information and doesn't dictate treatment.

Regarding peripheral neuropathy I've no doubt there are quite a lot of reasons for it. Too low OR too high levels of vitamin B6 are two causes.

en.wikipedia.org/wiki/Vitam...

en.wikipedia.org/wiki/Vitam...

jjyankee profile image
jjyankee in reply tohumanbean

Just had iron panel done- looked good. B12 test about a year ago and that was fine- Cortisol test fine too- I take supplements but don’t take high doses of anything - multi, magnesium, b complex, selenium, digestive enzyme , vit C , vit D

in reply tojjyankee

I had my carpal tunnel operated on many years ago and currently have pins and needles in my feet and calves and burning in my feet. I was recently tested for diabetes and all fine, take 125 of Levo but could do with some T3 in the mix.

Di

jjyankee profile image
jjyankee in reply to

Thanks so much for letting me know this- I am a bit paranoid about having diabetes on top of my other issues! The sensations you described is exactly how mine feels-

Did your doc say it was due to thyroid? When I was 20 pounds lighter I still had some nerve stuff but but it was tons better- I think I have more swelling/ inflammation now because of extra weight, and my current awful thyroid ranges probably impacts nerves as well. I hate this illness!

Good luck to you! Message me if you get it under control- I’d really like to know what helped you- I recently added a small dose of nature thyroid to my levo and I’m starting to feel better; especially my mood and brain fog. I could not tolerate any dose of cytomel - it’s very harsh compared to the more balanced NDT.

Will keep in touch. The worst is in hot weather when the blood vessels break in my legs.

LV2475 profile image
LV2475

I got diagnosed hypothyroid 7 months ago after reporting ongoing pins and needles and pain/weakness in my hands to my GP. I’m definitely not diabetic and it seems to be getting a bit better over time. I really notice that it’s worse when I’m retaining fluid - can tell because my skin on my hands feels tight, and my watch becomes tight too. So I’m assuming/hoping it’s due to pressure on the nerve. Best of luck.

jjyankee profile image
jjyankee

Yep- I have that same feeling in my hands too- stopped wearing rings. Hopefully this will improve when I have my thyroid levels stabilized. Thanks for sharing your experience🙂

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