How do you experience pins and needles? - Thyroid UK

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How do you experience pins and needles?

Justiina profile image
39 Replies

I know with thyroid issues as well with other health conditions pins and needles are quite common. I have had it bad for years. Bad as I don't know anyone else that would have it the way I do. I started to experience them bad over 20 years ago.

If I lay down on my side I can feel it either on my arm or even on my stomach. If I sit for a while my both legs can go so bad I can't even walk like the pins and needles are really painful and my legs feels like spaghetti so I can't walk for a while.

I actually injured my ankle really bad standing up even though I felt pins and needles. My leg was not responding and my ankle snapped and I had grudges for weeks!

If I lay down on my back and read a book my ring and pinky fingers start tingling.

Even back of my neck and head can feel like that sometimes.

I don't know anyone getting them so easily, often and painful. So I am just curious how other people here experience them?

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Justiina profile image
Justiina
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39 Replies
Had-enough profile image
Had-enough

Oh I get them, along with burning feet and legs as well as internal trembling. I've started taking Gaba which helps a little with the pins & needles, but they never really go away. Oh, and the minute I lay on my side to sleep along comes restless legs. Truely fed up with it all.

in reply toHad-enough

Restless legs syndrome is closely linked with iron deficiency, had enough. Do you have a recent ferritin result? When you say RLS, you do mean an internal feeling in the legs that means you are compelled to move them?

Justiina, yes, for about ten years at night I have had to wake up several times because of numbness and tingling in hands and arms, and pins and needles start in a sitting position in my legs, and I can no longer hold a phone without supporting the hand.

These can be symptoms of b12 deficiency, and sometimes I think that if I take B 12 before bed it is better. My daughter has just tested as insufficient B12, so we're both trying B12 patches. Not sure its helping, but then they don't help everyone.

If you aren't already supplementing B12 you should describe your symptoms to your gp and ask for a B12 test.

Had-enough profile image
Had-enough in reply to

Thank you Aspmama, my serum ferritin was 170 (15 -250) about a year ago and folate was slightly over range but I was supplementing B12 then. I've pretty much tried most supplements. Yes internal feelings in the legs, just awful.

in reply toHad-enough

Have you asked for treatment for the RLs? Pregabalin helps some.

Pixielula profile image
Pixielula in reply to

If your daughter tested "insufficient" for B12 why is she not getting injections from your GP?

in reply toPixielula

Very good question. I Blue Horizoned her due to her extreme fatigue, then the GP said "well B12 varies a lot" and retested. The antibody test was negative, but tgen it is in 50 per cent of cases. Her second test came back as 'normal' but I suspect is still low, or the NHS range is different. I am nagging her to get it and send it to me. I had to put her on b12 supps as soon as the second tests were over because I don't think she'd have got through the university term.

Pixielula profile image
Pixielula in reply to

Oh man that must be very scary for you, my own experience with my daughter who is hypothyroid and whose last TSH was 3.09 (0.3-4.40) she says her doctor said that was fine! I said she is undermedicated, she says your not a doctor! She is now on a diet to lose the half a stone she has put on (doesn't seem a lot but she is only a size 8 normally) I said your not going to lose it whilst being undermedicated. She is me 15 years ago that thought GPs are gods, hard work trying to get them healthy when they are resistant. My daughter is also at uni just starting her PHD. Worst thing is I see it in our face times in our conversations and I say go get your thyroid tested! It always needed an increase this time for some reason she is resistant .......

in reply toPixielula

Yes, they don't want to fight the gp. Thank God private tests, though absurdly expensive, exist.

Maybe she's taking her dose with coffee or food, and you can get it upped just by oersuading her to change that?

Justiina profile image
Justiina in reply to

I fortunately don't have it at night or if I do it doesn't bother me.

I am supplementing B12 and my levels should be quite ok now. Was low two years ago and b12 definitely helped some. To me it mostly reduced gut irritation and yawning but helped with nerve pain around my right shoulder blade.

shaws profile image
shawsAdministrator in reply toJustiina

The B12 you are/were taking is it methylcobalamin sublingual tablets?

in reply toJustiina

I asked re B12 supps because if you are supplementing most of the tests for Autoimmune Gastritis, which can lead to PA, won't work.

Allyson1 profile image
Allyson1 in reply to

When I began experiencing hand and foot numbness, that's when my b12 deficiency was becoming more serious.

At first, I thought I had slept funny and cut off circulation but eventually realised that wasn't the case.

My b12 has always been in the "normal" range.

Godlyman profile image
Godlyman

I got it so bad this Thanksgiving weekend I ended up in the hospital they thought I was having a stroke I couldn't fell the right side of my brain as it keep tingling

marigold22 profile image
marigold22

I used to get pins & needles in my hands badly but they have disappeared. Unfortunately I'm not sure which of the supplements I take has managed to get rid of them. I mainly take Vit C, magnesium (possibly this), vit D. Also my thyroid is now optimally medicated which may be the reason. good luck x

Enfrance profile image
Enfrance

I would say to definitely check your V12 and iron or ferritin especially all your others vitamins to check for a deficiency

Justiina profile image
Justiina in reply toEnfrance

Yeah. My b12 is under control but it's hard to get ferritin tested (live in finland). All doctors say as my haemoglobin is perfect I can't have iron deficiency. I try to explain that I have had sort of heavy periods for over 20 years now but they just ignore me. I tried iron supplements some time ago and oh boy it did help some but gp told me to stop and called me an idiot but still refused to test me.

in reply toJustiina

If they helped, keep taking them. The dr is the idiot, if he is unaware of the importance of the ferritin measurement.

Gcart profile image
Gcart

I had this problem also like you describe For me now it has cleared up after years. I am afraid i dont know which vitamins did it but since advice here after blood tests ln BH i started vit B12. , b complex iron vit c magnesium vt D . That symptom stopped after about 3 months.

My thyroid treatment is also better having added T3!

But you must get. Bloods tested before starting any supplements

Hope you can find some improvement. I know its an awful feeling good luck x

Singoutloud profile image
Singoutloud

Pins and needles and burning feet are normally a sign of low B12. Have you had your B12 and Folate levels checked? Even if you are in range, (which is possible as previous supplementing may skew the results) anything below 500 has a possibility of causing neurological damage. If below range, you need to figure out why you are not absorbing B12 from your food. There are a number of causes such as PPI use (omeprazole etc), vegetarian/vegan diet, certain medications, previous operations on stomach or bowel, and pernicious anaemia. It may be that you have Intrinsic factor antibodies preventing absorption. Take a look at the pernicious anaemia society website and you will find a list of symptoms relating to b12 deficiency. There is also a forum for them here on health unlocked with some very knowledgeable people if you have any questions.

Justiina profile image
Justiina in reply toSingoutloud

My b12 is now over 700 after supplementing. Over here in finland they don't test PA from blood, you need endoscopy. I have had it years ago but I don't know if they took a sample to test that!

Not sure if in some of our walk in labs one can get those antibodies tested. If do it doesn't count for most doctors so probably one just needs to continue supplementing. Fortunately I respond very well to b12 oral spray!

mrsm49 profile image
mrsm49

Are you taking sublingual b12? I had similar symptoms to you but now take 5000mcg methylcobalamin form of b12 and my levels are up to 1900! Docs panic until I tell them I supplement but my tingling and numbness has gone and brain fog improved too. Despite high levels in blood I seem to need this high dose as if don't take for few days symptoms creep back.

mrsm49 profile image
mrsm49

Forgot to say you need to take folic acid too when supplementing b12 x

Learner1 profile image
Learner1 in reply tomrsm49

"Folic acid" can build to toxic levels in many people with certain genetics and cause mysterious symptoms.

Try taking 5-methyltetrahydrofolate instead, which is the more natural, active form the body uses.

Allyson1 profile image
Allyson1 in reply toLearner1

Hmm...methylfolate can be very high side effect compared to folic acid, for some of us.

Learner1 profile image
Learner1 in reply toAllyson1

I doubt it's the problem as its what your body actually uses. Folic acid must go through multiple conversions to get to 5-MTHF (folate) in your system.

So, by taking the folate, you're skipping down to the useful part, and you may find you may be taking more than your body needs. Or more than it can handle without other cofactors like methyl or adenosyl B12, riboflavin, B6, magnesium, etc. so you're getting bottlenecks further down the pathway.

Or, the folate could be working just fine, and you're methylating well, and detoxifying mercury, lead, etc. and feeling crappy because of that.

A little more investigation might be in order, as I doubt your body depends on a synthetic chemical over the natural one.

Good luck in your search!

jamesal0 profile image
jamesal0

Hi Justiina. Sorry to hear about your pins and needles. What thyroid supplement do you take. Are you 100% gluten and dairy free.

J

Justiina profile image
Justiina in reply tojamesal0

I am gluten and dairy free , but I am not on any meds even though my T4 has dropped from 17 (10-21) to 10 and t3 is on end of range as well, mostly 3 in range 2.5-6 they don't investigate it as my TSH is fluctuating between 1-2.5.

Endo has told me it's all normal and they don't even consider secondary because my TSH is not low enough.

Can't self medicate as I am finland and can't order meds without prescription.

I am supplementing everything else possible.

jamesal0 profile image
jamesal0 in reply toJustiina

Hi Justiina, then I don't know sorry, I was going to blame thyroxin but as you don't take any. Maybe take a coeliac's blood test - just as part of your investigations into where your thyroid is going.

My tingles started in my feet, I would be sitting at my desk at work after lunch and it would fee like I had my feet resting on an running electric motor - sort of humming feel. The over about 6 weeks it progressed up my legs to mid thigh. The my hands started and finally my scalp started randomly going - I would feel like my hair was stand on end. Sort of crawling sensation.

Gluten free and B12 injections calmed it down but not fixed. I ended up going off thyroxin and on NDT and now I only get a tinny bit - more like a prickly sensation across my across the back of my hands/scalp. Feet a 98% good. I'll be interested if someone finds a cure.

J

MariLiz profile image
MariLiz

It sounds like a B12 problem to me, you can have a good level in the blood, but if you are low in other nutrients it won't be absorbed and get to your cells where it is needed. Are you just taking ordinary tablets or a sublingual form? Tablets often don't work as well as they rely on absorption via the digestive system. This is where we have problems. Sublinguals dissolve under the tongue, and go straight into the blood stream. You will need a good quality B complex too, and ferritin.

Are you vegetarian or vegan?

Justiina profile image
Justiina in reply toMariLiz

I use spray and react very well to it. It reduced gut irritation and constant yawning and anxiety.

margaretheron2 profile image
margaretheron2

Hi ,yes I get wakened up through the night with the pain of pins and needles some times in my legs other times in the whole one side of my body ,or in my fingers or my arms x

Allyson1 profile image
Allyson1

Have you been tested for diabetes?

Justiina profile image
Justiina in reply toAllyson1

No except fasting glucose few times which has been normal.

Look up cubital tunnel syndrome, that could account for your ring and pinky tingles because your elbow is bent reading your book. As soon as you straighten your arm do the tingles go?

Justiina profile image
Justiina in reply to

Yeah that sounds familiar! Tingles go when I put down the book. Thanks!

marigold22 profile image
marigold22

As you are in Finland, do you take Vit D? Have you had it checked? I haven't researched all the symptoms for all the vits and minerals but they all have peculiar effects when low.

Justiina profile image
Justiina in reply tomarigold22

For some reason I never get my d tested as I already supplement. But how do I know do I get enough!

I will pay for private Vit D next time I will go to get tested. Isn't ridiculously expensive like many other tests.

ritecharm profile image
ritecharm

Hi. I feel strangely assured to read all these posts. I had some vibrations issues in hands and feet which have now changed to tingling and yes my face esp chin also tingles sometimes and I have twitches almost all over body. My b12 is below 500 but in range so I don't get any treatment for that but I got advice on this forum earlier too abt b12 and sublingual b12 helped me,I need to probably start again on it

olgadimitri profile image
olgadimitri

Hi, for me was a great help in that case Bikram yoga. When I was living in Canada I practiced it and it was so helpful with the blood circulation . After work I put my burning feet to snow, pain was unbearable . Only Bikram yoga was helpful, not other kind of yoga or supplements. Now I'm living in rural part of Asia and no such thing as Bikram yoga here and my pain return back . I miss the classes so much . Please try it slowly with moderation . For me Bikram yoga was miracle .

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