Peripheral neuropathy in hypothyroid? - Thyroid UK

Thyroid UK

137,799 members161,619 posts

Peripheral neuropathy in hypothyroid?

thyroidfairy profile image
32 Replies

Weird symptom TSH 180 then 100 on same day, 4weeks later TSH 77 on thyroxine 225mcgs. Today weird feelings in fingers felt numb when texting has been intermittent all day can high TSH readings account for intermittent peripheral neuropathy & is there anything I can do to stop this progression?

Written by
thyroidfairy profile image
thyroidfairy
To view profiles and participate in discussions please or .
Read more about...
32 Replies
puncturedbicycle profile image
puncturedbicycle

Wow, that is some tsh.

This might be of interest: mayoclinic.org/diseases-con... 'Hypothyroidism — a condition in which your thyroid gland doesn't produce enough thyroid hormone — is an uncommon cause of peripheral neuropathy, such as carpal tunnel syndrome.'

I found b12 injections good for pn.

Singoutloud profile image
Singoutloud

The peripheral neuropathy is normally associated with a B12 deficiency or pernicious anaemia.

Symptoms pernicious-anaemia-society....

I would suggest a test for B12 and Folate and if b12 low (under 500) get further test for Intrinsic factor antibodies to rule out pernicious anaemia.

Causes of B12 deficiency pernicious-anaemia-society....

thyroidfairy profile image
thyroidfairy in reply to Singoutloud

Singoutloud many thanks I honestly never thought b12 could be the peripheral neuropathy cause...wow! I'm so entrenched with TSH kind of blaming that for everything I have tunnel vision instead of looking at the whole picture..Will pursue this Yx

Singoutloud profile image
Singoutloud in reply to thyroidfairy

You're welcome thyroidfairy it's so easy to become blinkered and blame everything on the Thyroid. I've done it myself. I only found out I had pernicious anaemia because the labs refused to test my Ft3 so I did a blue horizon home blood test that showed low b12. It still took 6 months of testing to convince gp I needed b12 injections though.

The pernicious anaemia society also have a forum here on health unlocked and just like this forum they have some very knowledgeable people that are happy to answer any questions you have. healthunlocked.com/pasoc

Also the link that Marz has given you for the BCSH guidelines is great for waving under your doctor nose if he has no idea about b12 problems. Definitely worth a read

Good luck 😊

Marz profile image
Marz in reply to thyroidfairy

thyroidfairy - in your last post/thread some of us discussed with you about neuropathy and LOW B12 - so why the surprise ? - and the wow ! I appreciate you have brain fog - however do please read through everything some of us have taken time with in order to help in your previous thread ....

I have re-posted links for you and yet no response.

thyroidfairy profile image
thyroidfairy in reply to Marz

Marz bit surprised at your response as I am very new to blogging I didn't realise I was to respond to every suggestion. I wont be able to respond to all advice for many reasons which I have explained so would welcome a solution to this or is it best to leave this forum..I am confused. The surprise & the wow was the lightbulb moment for me that low Vitb12 could be the cause not all TSH related which I went on to expain...

Marz profile image
Marz in reply to thyroidfairy

Yes of course you are correct. greygoose and I commented on your B12 in your previous post/thread so I found myself observing the same questions and answers - hence my comment. Absolutely no problem ☺

thyroidfairy profile image
thyroidfairy in reply to Marz

Marz I honestly don't know what's wrong with me at the moment but that's no excuse for contacting you moaning when your only trying to help I'm so sorry

Marz profile image
Marz in reply to thyroidfairy

thyroidfairy ...... Absolutely no problem - it can be confusing when you first join. Just knew I had done my best to reply helpfully. Of course no-one expects you to answer every post - just use the like button - which indicates you have a had a read :-) In fact I too became confused trying to keep track of your two threads - and ended up posting here when it should have been your other thread :-)

thyroidfairy profile image
thyroidfairy in reply to Marz

Marz thanks for getting back to me & sorry for the confusion, not only am I bit confused I can make others confused by my actions also. I will use the like button as advised & huge thanks for all your advice & suggestions I promise it is absolutely valued &appreciated. So glad at you saying about the two threads I was tying myself in knots jumping between the two😕more focused thyroid fairy from now on & of I'm not let me know please..take care

Marz profile image
Marz in reply to thyroidfairy

I think those that thought I had been harsh in my response earlier had not read your other thread and the responses. I think for many - including myself - it is difficult to see everything on a phone. Much better to see the bigger picture - literally - when on a PC.

Hope you continue to make progress. Will look out for your posts.

Marz profile image
Marz

Lots of excellent posts on the topic of PN in RELATED POSTS - to the right of this page on a PC or scroll down if you are on a phone ...... :-)

As I suggested on your previous post - you need more regular B12 injections.

bcshguidelines.com/document...

Above link takes you to the Guidelines your GP should have read ....

radd profile image
radd

thyroidfairy,

Peripheral neuropathy is commonly associated with a B12 deficiency. As you are receiving injections, a deficiency could be considered but if your levels are between 500 - 1000, look to your adrenal glands where hormone becomes exhausted through supporting low thyroid hormone over many years..

I had (and still have occasionally) peripheral neuropathy in hands and feet, but the severity has decreased over time as I have managed to improve my well being with optimal thyroid hormone and supporting the adrenal glands.

I have to give blood to reduce my high iron levels every month and always suffer peripheral neuropathy after for several days (along with other weird symptoms) but each time this happens, the severity is a little less.

Medicating Levothyroxine gave me dizziness too and also very weird head rushes. Adding T3 has eliminated all symptoms and even after 17 months my improvement continues.

A TSH of 180 when medicating a good dose of Levothyroxine is clearly wrong and should be investigated quickly. You advise of a recent head injury followed by a seizure. Such a high TSH could be the result of a possible pituitary injury or tumor ? ? ? ......

Are you under an endo ? ? ....

thyroidfairy profile image
thyroidfairy in reply to radd

radd thanks for your advice got super brain fog going on here & I don't mean the going into a room & forgetting what I went in for I'm talking e.g when I'm replying to advice on this forum & scroll down to put the @ then name it takes me approx 3-4 attempts as I have no memory of the nameI want to respond too😕 I'm so pleased that thryoxine meds could account for the dizziness as that's a horrible feeling & never had T3..how sad is that that being so pleased that something horrible going on that could be a potential 'cure' in the very broad time with thyroid issues I know no cure. I had head CT after my fall & totally clear & it was the 1st thought that came to my gp head. I saw endo first time ever a week after head injury & discovery of TSH of 180 & it was awful. As I had two vastly different TSH readings on the same day one routine one at GP in the am of 180 & one hours later after head injury if 100..he only focused on this kept saying he couldn't understand this what did you do!!!! I had been knocked out,sutures,CT scan on the same day & my participation was putting my arm out to get more blood tests, he also said must be lab error although the times & where the samples had been taking were clearly documented..he went on & on about these readings finally took bloods said in on right dose of thyroxine & he would see me in 6 MONTHS..I am 50 & my mum came in with me as I was so off balance, trembling, fumbling over words & she could not get over how dismissive he had been..My mum stopped coming to gp with me when I was a teenager shows how ill I felt. Anyway sample endo took was 77 so in a 2 week period my TSH had been 180 100 now 77 gets rechecked at gp on Fri & that's position im in currently..pretty miserable Yx

Marz profile image
Marz

b12deficiency.info/signs-an...

Trying to post Edited Response and it is not being allowed for some reason so am posting it again .... Scroll down for Neurological Signs and Symptoms.

radd profile image
radd in reply to Marz

M,

I find signing out & in again helps me edit posts when previously unable.

Hope Crete is still warm for you.

Marz profile image
Marz in reply to radd

Thanks for the tip :-) We are still enjoying temps around mid 20's daily - just as well as the house is in turmoil with a new kitchen going in - slowly ! Sadly pool is chilly as it is much cooler at night. We seem to be in Betsy more than upstairs :-)

HLAB35 profile image
HLAB35

Do hope you get this resolved. Although B12 is usually the first thing to try, you evidently need optimal thyroid hormones as well on a cellular level.

N.B. B12 (methylcobalamin) generally works well alongside methylfolate and p-5-p (B6) and other well-absorbed B vitamins and Magnesium to get the optimal effect on nerves.

jamesal0 profile image
jamesal0

I had the same - tingling hands, feet and scalp, metalic tongue. I felt like I was resting my feet on an running electric motor, buzzing humming tingles, numbness. It would creep from the right foot, into the left foot, up my legs. Some days my back and scalp would feel like I had just seen a ghost, crawling tingles over my scalp. Other days I'd feel like I had insects in my shoes. And it all depended on how much Levo or NDT I took in a day - more was worse.

It took me the best part of 9 months to sort out and I cant really say exactly which fixed what, as I tried lots. So Ill just give you the formula that is working with me at the moment.

110% gluten free - I really mean it - nothing- not a single thing - only eat stuff you cook, from whole foods, Meat, rice, potatoes, vegies. No shop bought Gluten free products. (Fixed metallic/numb tongue and tingly scalp)

Vit B12 injections (Clarity of thought maybe brain fog too)

Mega Magnesium 1000U per day for a few weeks and then ease off to 250. (Fixed daily head aches)

Iron/Vit-C supplement (I never noticed anything but my Iron was low).

Vit D3 supplement (I never noticed anything but my D3 was low).

Natural Dedicated Thyroid (NDT). I could still take it when I couldn't take Levo anymore. Levo was giving me chest pains, head aches, eye pains, join pains, dry hair/skin, anxiety, breathlessness, high blood pressure, high blood sugar. Maybe low temp, kidney function probs. Although I couldn't get sufficient NDT into me either as I would get a head ache for 2-3 hours after taking.

Testosterone. This is the gold. Once I started TRT supplementation, everything started to work. I began to be able to take correct NDT quantities (2.5-3.0 Grains per day instead of 1/2 grain) Pretty sure my adrenal system was totally buggered although tests were inconclusive. Once I could take NDT at correct doses all my kidney, Liver and blood chemistry came good over a few months. I'm still not perfect on tingles but I think it may be the odd bit of gluten I accidentally consume.

Hope something helps

James

thyroidfairy profile image
thyroidfairy in reply to jamesal0

jamesal0 many thanks all your suggestions & you had me until you said only have gluten free diet to the extent cook all ingredients..I am gluten free but as someone who's food goes from raw to burnt without even singeing this isn't going to happen☺VitD3 supplement what does that help with please ? hmmmm testosterone in feeling pretty crap at moment nitro don't want to feel carp with a moustache & beard Yx

thyroidfairy profile image
thyroidfairy in reply to thyroidfairy

Hate hate hate autocorrect..should say testosterone I'm feeling pretty crap at moment and don't want to feel crap (not carp that's a fish) with a moustache and beard..got to love modern technology..cheers Yx

jamesal0 profile image
jamesal0 in reply to thyroidfairy

I know nothing but ladies have testosterone, oestrogen, progestogen etc. If it was me I'm be making sure I had really good numbers (upper percentiles)

puncturedbicycle profile image
puncturedbicycle in reply to thyroidfairy

thyroidfairy jamesal0 is correct, we all have a certain amount of testosterone in our system. I was prescribed testosterone/progesterone cream (I am a woman btw) and had no hairy side effects. It didn't do much for me so I stopped using it, but it was a trial so that was the point, to see if it helped give me more energy.

SlowDragon profile image
SlowDragonAdministrator

Personally I developed peripheral neuropathy after starting vit D supplements

Adding vitamin B complex and B12 helps me

Still getting some numbness in right foot, but otherwise much improved

drgominak.com/vitamin-d-hor...

"Usually within the first year of vitamin D supplementation the B5 body stores get used up and new symptoms of pain, burning and balance difficulties begin. Patients who have fibromyalgia or arthritis or autoimmune disease are already severely B5 deficient even before their vitamin D deficiency is detected."

patchface profile image
patchface in reply to SlowDragon

Glad I read this have been taking Vit D and Calcium for a while now...wonder if this is causing my pain?

SlowDragon profile image
SlowDragonAdministrator in reply to patchface

If taking vitamin D, we don't often need calcium as well. Unless tested and found to be deficient

Improving vitamin D actually raises calcium levels so much that it's recommended to take vitamin K2 Mk7 to help direct excess calcium to bones not to clog arteries

Magnesium is important too with vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Eddie83 profile image
Eddie83

I already know that hypothyroidism can cause carpal tunnel, because I had it. Taking a look at hypothyroidmom.com/300-hypo... , I don't see neuropathy listed, but I do see "numbness and tingling" in many areas of the body, including hands, listed. The only thing I know of which will stop progression, assuming you are as hypothyroid as your TSH suggests, is normalizing FT3.

sky1hypothyroid profile image
sky1hypothyroid

thyroid fairy.... have you been tested for diabetes? a major factor is neuropathy.

thyroidfairy profile image
thyroidfairy in reply to sky1hypothyroid

sky1hypothyroid yup had fasting glucose couple of months ago which was normal..thanks for the suggestion though as all and any advice gratefully received x

sky1hypothyroid profile image
sky1hypothyroid in reply to thyroidfairy

no problem, and sorry m, was a bit harsh in her reply to you.

thyroidfairy profile image
thyroidfairy in reply to sky1hypothyroid

sky1hypothyroid I was a bit taken aback & as serious brain fog going on thought I was probably over reacting

Jilliemo profile image
Jilliemo

I've experienced the same thing in my toes also pin pricks all over. I'm not sure that it will help you but I've been taking Neuro Mag 400mgm 2 in the morning and Mag. 400 mgm before bed seems to have stopped both of these symptoms. I don't think there is any precautions about Magnesium it can cause diarrhea with larger doses but adjusting the dosage down will take care of that. I wish you luck.

You may also like...

Hypothyroid / Peripheral Neuropathy

but about two years ago started getting symptoms of neuropathy in my legs and feet, which is...

Is there a link with hypothyroidism and sensory peripheral neuropathy?

it is getting worse. I have been told it is progressive. I think it is linked to thyroid and...

hypothyroidism and peripheral neuropathy

and EMG confirmed peripheral neuropathy. In most searches the link between neuropathy and...

Peripheral Neuropathy

Numb toe on going for weeks. Put it down to my shoes. Left hand weakness but put it down to a...

Peripheral neuropathy

(I take 100mcg levothyroxine daily), and has progressed from feet only upwards. Occasional pain on...