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Neuropathy, what does it feel like?
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Neuropathy, what does it feel like?

What are the symptoms or the feeling of hypothyroidism neuropathy?  I have a TSH that has ranged from 2.2 to 3.14 and a Free T4 .9 to 1.1. My antibodies come back negative TPO and TGab.  The doctors insist I do not have a thyroid problem.  I have many symptom of low thyroid tired all the time, weight gain, dry skin, headaches, losing my hair and the hair has gotten dry and curly, thin brittle nails, foggy thinking, dizzy or light headedness, numbness in my fingers for the last 4years and joint pain and muscle spasms.  I have been to a neurologist in regards to the numb fingers and they thought it was thyroid related so when the TSH came back "normal" they did a nerve test and that was inconclusive.  I happened to stumble on to an article about hypothyroidism neuropathy and have been trying to get as much info on this as I can.  No one has been able to explain to me why my fingers are numb.
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640719_tn?1277143630
I get the numbness/burning/tingling/pain in my toes and fingers. Carpal Tunnel effects the middle finger over to the numb which can be caused by thyroid disease. I get this when my levels go just a bit off and it don't take much. Carpal Tunnel and Tarsal Tunnel (feet) can be caused by the thyroid not being regulated correctly. All your symptoms are indicative of hypo.

Depending on your reference ranges your lab uses your levels could be on the hypo side. A good Endo might help out.. I to have negative antibodies but do indeed have thyroid disease.  

B 12 deficiency can cause neuropathy and I believe low calcium seems to be prevalent in many persons with thyroid issues. My husband was recently DX'd with hypothyroidism along with a B 12 deficiency and his hands were numb/tingling/fire/hurting it was his only symptom of thyroid disease.  
Don't let it go to long as it can cause permanent damage.
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499534_tn?1328707778
I have neuropathy from my thyroid. I get tingling pain in my fingers and toes. I take B12 shots weekly to get rid of these symptoms, even though I am withink mid normal range of B12.
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Avatar_f_tn
Juliva and Laura 1967 ~ Thank you for the info. I will bring this up again with my Internist at my appt this May.  I am low in vit D and I have been taking calcium and vit D.  My B12 was 383 range 180-914.  My tingling sensation is only in my fingers and it is on every finger.  I guess I should do something about this, it's gone on for to long now.
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Avatar_f_tn
Ten percent of people with Hashimoto's will have negative antibodies. I suggest a repeat antibody test and a thyroid ultrasound. FT4 has been on the low end of normal. Shame that the FT3, the most important level!, was not tested.

You may need to look for an endo who believes in treating symptoms, frees and NOT TSH, a pituitary hormone. Try this site: http://www.thyroid-info.com/topdrs/

Your symptoms sound low thyroid hormone. You may benefit from thyroid hormone replacement. Also, low D can cause this, so get it above 60. Sunshine works best as does the liquid drops found at many vitamin stores.

People with Hashi commonly have low D, B12 and iron, which is why I recommend a repeat antibody test. Also, any TSH above a 2.0 is questionable and warrants further thyroid testing. My TSH never went above 2.7. I have Hashimoto's (221 TPOab and nodular goiter).

Finally, many Hashis have intolerance to certain foods such as gluten, soy, dairy, corn, sugar, caffeine, green tea...For me, I had to eliminate soy, caffeine gluten and limit dairy and sugar.

For further reading on triggers and food intolerances, I recommend, "Why do I have thyroid symptoms when my labs are normal?" Here is the link to the book. www.thyroidbook.com  

:) Tamra
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Avatar_f_tn
I was just diagnosed with Hashi and hypo a couple weeks ago. My TPOab was 483. My Vit.D was down to 8.5 and I lost much bone mass. Now I have osteoporosis which I take Boniva for. My Ferritin level is very low at 10. That's it for my reserve iron. I was tested for allergies by my allergist. He tested for three foods..soy,peanuts and orange. I came out positive for all three. Now I'm being tested for many foods. I'm lactose intolerant and went off of all dairy and red meat. My cholesterol is high. I've heard that Hashi can make cholesterol high. Anyone hear that?
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798555_tn?1292791151
en.wikipedia.org/wiki/Peripheral_neuropathy - mentions hypothyroid as a cause.

FT3 levels seem to effect nerve endings and digestive (one big nerve so to speak) more than FT4 or TSH.

When my FT3 is in the basement (last month) And FT4 was almost gone, I felt tingling and burning in my face, hands, feet, and calve muscles. Vision is effected also - early morning bluryness for me.  Before I was on thyroid med I had carpel tunnel really bad, and still had it some on a T4 med. T3/ T4 combo med helped tremendously.  Feet / lower legs continue to tighten when standing long.  Trying to fix it, but need to get my thyroid levels back up for them to heal.

Magnesium and B vitamins help hypothyroid induced Neuropathy. Hylands 'Leg Cramps" is the best thing out there to help relieve overall nerve / muscle issues - not just for legs, its cheap and wallmart and walgreens have it.
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Avatar_f_tn
Thank you to everyone.  I've been wondering if I've been NUTS and I know I'm not, I've been just given wrong testing. I think....
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910435_tn?1296752210
I had actual nerve damage when I was hypo.  My neurologist ran every test under the sun and said that it was from the Hashi's.  I started out years ago with Graves and it went into remission for 15 years or so until all this (and many many more symptoms happened).  I have a vit D deficiency, but I guess my B12 was fine all along....or so they say. I had painful beesting pain in my feet and legs, tingling in the hands and face, and it would sometimes move to different areas of my body, but it was very real.  I have actual nerve damage from that, and I also notice that I get whole-body tingling sensations with adrenaline rushes sometimes out of the blue, and it freaks me out.  Not sure what that is all about.  Does anyone experience that?  Thanks everyone for all the above posts.  I thought I was a rare case with all the neurological issues.  It's not good to hear that anyone's suffering, but sometimes helps to know you're not the only one.
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649848_tn?1357751184
I have pernicious anemia (vitamin B12 deficiency) and that a causes neuropathy also.  I take b12 shots every 2 weeks (wanted to take them weekly, but pcp won't let me because the shots I take keep my levels at mid range).  The shots help considerably, but I do still have some neuropathy in my hands and feet.  My doctor said he thought I'd had pernicious anemia for a long time and because it went so long not being treated he thought the damage would be permanent.

I do also take magnesium.  I'm not sure that it does much for the tingling, numbness, but it sure does help with muscle aches and pains.

Lori707 -- you should not use soy products when taking thyroid med anyway.  I check all the labels to make sure there's no soy in my food or supplements.  
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798555_tn?1292791151
Just curious, did a doctor say you have permanent nerve damage? Did you take those tests where they put wires on the end of your limbs?

Are you still hypo a little , or low on T3.?  Synthroid did nothing for my body and nerve pain. Dessicated and even cytomel helps with that.

I still have burning feet after standing, but I'm hypo and raising meds at the moment (changed brands),
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535882_tn?1396580285
i also had severe neuropathy. had a bunch of neurological test. all negative. emg. mris.of the brain/thoracic spine.  . neurologist said it was from nerve inflammation,  it went away after 8 months. then they found my enlarged multinodular thyroid by accident due to finding it on one  of the mri of my thoracic spine.  thyroid gone . and all nerve  problems are gone now too.  i think it was all connected. somehow.it started with a bad virus , somehow it's all connected.  Kevin
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640719_tn?1277143630
Your B 12 maybe low anything under 400 although within "Normal Range" can cause neuropathy. That could be your problem. My hubby's was about the same numbers as yours and they started him on B 12 injections and it stopped all of the burning and tingling in his left hand but he needed surgery on the right. Unless your lab uses different reference ranges from ours most likely that could be your problem.  Our Lab Stated right on the report anything lower then 400 has been known to cause neuropathy in some individuals. Might want to check that out!
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910435_tn?1296752210
Yep, I had both a NCV and an EMG.  He is a very thorough neurologist (some say overkill, but not me....I say better to be safe then sorry).  I don't know if nerves can heal or if the damage is/was "permanent," but he did say there was minimal damage, which, coupled with the other off-the-wall symtpoms I had, began a slew of other tests. Like I said, the only thing he came up with was that it was all from the Hashi's/Graves.  It was the strangest/scariest/horrible thing I've ever gone through.  We really thought I had MS, so I'm thankful that was negative.
I haven't been tested in a few months.  I should ask to be tested.  My hair/nails are seeming a little dry too, but nothing major.  I probably should get it checked again and see if Cytomel is for me or not.  What brand are you changing from/to?
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Avatar_f_tn
WOW!!!! Thanks to all of you and this site, everyone of you is awesome!!

I never heard that about the B12 levels being under 400 can cause neuropathy.  My grandmother had pernicious anemia and hashimoto and so does my son so my family history is there.

I have had these numb finger for almost 4 years.  It first started in my forefinger and the middle finger and with in a year they all went numb on both hands at the same time.  Obviously I have all the symptoms of thyroid problems or low B12 so why do these doctors strictly go by lab numbers and ranges? I think I'm causing more harm by not doing anything instead of trying some thyroid or B12 shots.

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798555_tn?1292791151
"I probably should get it checked again and see if Cytomel is for me or not.  What brand are you changing from/to? "

Many have continuing symptoms on T4 meds alone and some form of T3 relieves them. I cannot function correctly on T4 med alone - seriously.

Cytomel gave me never ending headaches - had to stop.

Been on Armour and Time Caps (Armour Generic). Just changed from Nature Throid to Canadian ERFA dessicated Thyroid. This was all due to the dessicated shortage last year, and the Armour reformulation.
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Avatar_f_tn
HI All,
   I have to ask how many of you have ever taken a Quinolone/Fluoroquinolone Antibiotic for say a bladder infection or for any reason. Drugs such as Ciprofloxacin (Cipro), Avelox, Levaquin, Factive, Norfloxacin, Moxifloxacin, etc. (google the product names)???
  You may have been 'floxed'.... unfortunately.
Please let me know.  I have all you are talking about ...and more. These drugs are chemotoxic and cause wide range damage.
I wish you all the best,
Thanks,
Carolyn
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798555_tn?1292791151
Neuropathy can be a hypothyroid symptom and eventually gets better from what ever thyroid med and level works for a person.

The fact that it can get better in time, along with other hypothyroid symptoms, from thyroid treatment points to the cause in hypothyroid patients. Just being on a T4 med can do this to some people that will benefit from also taking additional T3.

If it doesnt seem to parallel other hypo symptoms, then other causes need to be looked for, diseases and possibly info like you mentioned.

I have never taken the meds you list.

Are you hypothyroid with neuropathy?
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519736_tn?1253990426
I have had HUGE doses of those antibiotics!!
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798555_tn?1292791151
"I have had HUGE doses of those antibiotics!! "

-  And do you still have neuropathy with hypothyroid?

If so, you need to ask what came first, to figure out the cause.
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1504101_tn?1299158864
Does this include "Trousseau's sign"? I have the numbness, tingling, then uncontrollable spasms of my fingers and toes..all without a blood pressure cuff. (I'm thinking it's the extra "fluff" on me that cuts off some nerve or something?.?.) My B-12 is high (take 2000mcgs a day now), and I am on the 100,000 vitamin D once a week, with daily calicium 2000. I have noticed this is getting less and less since taking the vitamin D and calcium. So, you're saying it can be "repaired" and "go away completely"? I surely hope so. :D
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798555_tn?1292791151
I am saying it can get much better if its from thyroid levels, it can get better for some if  FT3 is raised to the upper third of the range.

My feet get hot and tingly and I get carpel tunnel feeling in hands when my FT3 is lower than mid point. Even after raising levels it took months to get better by the week. My glucose also gets elevated with low FT3 and that is know to cause neuropathy in diabetics. MY FT3 is in the upper third and my glucose dropped into a health range. I also take magnesium, which helps nerves and muscle function. It is 80-90% better. I have read that some permanent nerve damage is possible from untreated or under treated hypothyroid, just like in diabetics. So some may never heal 100% as a result of scare tissue in the nerve shieths. I was told I might have this in the hands. And the ability to heal depends how long you had the symptoms in many people.

For some its about calcium levels or B12. No guessing, these need to be tested just like FT3 and fasting glucose.

Trousseau's sign is numbness, tingling,  WITH a blood pressure cuff. If you have it without the cuff, then yes could be from thyroid or some deficiencies.
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Avatar_f_tn
I agree with you that there is comfort in knowing someone else is out there like you.  I am having neuropathies right now in my arms and the Endo just referred me to a Neuro so I am at the beginning of this journey.  Mine all started after I started taking Levothroid, within 2 weeks.  I have been off the Levo for a month but the sensations are still there.  I tell my husband it feels as if someone just injected me with a warm liquid that runs down my arm.  So glad to hear that after all of your tests, they came back clear.  I hope you do well with managing the symptoms.
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Avatar_f_tn
I posted on here April 7th that I had just found out that I have Hashi's. Been sick for 4yrs now and found out this past Jan. that I had a reactivation of my Lymes disease that I had twice before which started 24yrs. ago. I have Chronic Lymes. Was told that Lymes reduces the immune system which in turn causes autoimmune issues. Hashi is common with Lymes as I was told. I have "autoimmune phenomenon" per my diagnose from my Rhuematologist and Neurologist. My EMG's, SSEP, and others came out abnormal. My blood pressure and pulse goes from way up to way down in a minute.  I'm systemic. Have inflammatory arthritis, different kinds of neuropathies all over my body, Candida, my body PH is acidic, had 6 bleeding colon ulcers, inflammation of my pancreas and liver etc.  I'm currently working with a good Endo doc, a Rhuematologist and an "LLMD". Lymes Literate Doctor.  The LLMD is trying to  get rid of the Canida, regulate my PH and then put me on IV antibiotics for the Lymes. Doc is also trying to increase my immune system which is showing low. (CD57).

Since it's so difficult for me to keep my Vit.D in check, I'm taking 9.000IU daily. I do not recommend this to anyone. I finally got my level to 59 from 8.5 which gave me osteoporosis. My ferritin went from 10 to 15. I still have awful muscle cramps throughout my body and terrible vibrations, like a tuning fork, throughout my body and head. I take extra magnesium but it hasn't helped. I had very dry skin until I started my Synthroid and then it became smooth. Now my skin is becoming dry again and I'm losing hair. I get fogged brained and can't sleep.  My T4,TSH,T3 etc. were all coming out good. Then my T4 went low and my test for the antibodies was 483. The doctor said I must have had Hash's for years.  I have asked for Vit B12 shots and was told no since I was in normal range in the 300's. I was told to take the pill that you put under your tongue.

Question:
Since I have several conditions that can cause these neurological discorders and mucsle disorders, I wonder if the Hashi's is the root cause of my neuopathies. How would I know the difference?

Thanks!
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649848_tn?1357751184
With so many issues that could cause neuropathy, I don't see how you would be able to tell the difference.  About the only thing I would be able to suggest is to try different things that might help alleviate the symptoms, and if you find something that works, stick with it.

For me, thyroid med did nothing for my neuropathy, but my B12 shots do; I'm currently up to once/week on those.  I still have some neuropathy, but as I mentioned before, my doctor said that damage would be permanent because my pernicious anemia went untreated for so many years.

Yes, your B12 levels are "normal" at 300; however, very low in the range.  I find that, like thyroid levels, B12 has to be high in the range, for me, or I don't feel well.  You could try a sublingual (under the tongue) or a liquid B12.  either of these would be more readily absorbed than pills.  
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Avatar_f_tn
Have you found any pain relievers to help? I have had burning/tingling arms for about 2 weeks straight and Advil and Tylenol don't work.  I am so sleep deprived bc I can't fall asleep.  A hot shower will help sometimes.   Also, can the B12 be in vitamin form to help?
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649848_tn?1357751184
Aleve Arthritis caps are my pain reliever of choice.  For night time aches/pains, my endo suggested tylenol PM; since it has both pain reliever and sleep aid.  Of course, you should talk to your doctor before taking OTC pain relievers; there may be a medical reason that you shouldn't take them.  

Not sure what you mean by "vitamin form" - do mean, as in a multi vitamin?  Or a B complex?  You can try it that way; however, I think most people have better luck with it as simply vitamin B12 in either sublingual or liquid form.
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Avatar_f_tn
I guess I meant B12 in a pill form as opposed to shot form which sounds like you get.
Thanks.
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649848_tn?1357751184
Yes, I do give myself shots; sublingual B12 comes in pill form and might work well for you.  For that matter, you can try other types of B12 pills if you like.  

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910435_tn?1296752210
Aw, thank you.  Sorry it took so long for my reply.  I just went through a divorce and haven't been on much.  I have never gotten the beesting feeling again, thankfully.  However, I do get occasional tingling.  I get the adrenaline rushes/tingling here & there.  I started to get numbness on the left side of my face/tongue and was told that it was a form of migraine.  I will say that when I initially got the flood of symptoms, etc., was when I was taking Levothyroxine.  My Endo switched me to brand name Synthroid (and bumped up the dosage a bit).  That, and he had me start taking vitamin D for a deficiency there.  Those where the only changes that were made for me.  Since then, my nodules have shrunk.  One actually vanished.  Many of the symptoms have gone away.  Good luck.  I hope you find the right balance of meds so you feel better as well.  It's not easy, nor is it fun.  I'm here if you ever have questions/need to talk.  
Lori
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Avatar_m_tn
Hi!  I just read that there is a nasal spray that is equivalent to the B12 shot.  It is called Nacobal.  One spray in one nostril one time a week and you don't have the expense of the shot.   You can get in touch with me at ***@**** if you want to chat further.
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