Hi, I have been experiencing pins and needles and muscle twitches all over my body for the last two months. It start say on my shoulder then on my legs on my face near my mouth just comes and goes all over throughout the day. Worse in my legs. I have hypothyroidism and Hashimotos. Got told I needed to increase my thyroxine two months ago as my blood results showed it was like I wasn’t even taking my thyroxine. I am though, I take it early in the morning with water no food for 3 hours so don’t know why it seems I’m not absorbing them. Anyone have something similar happen to them.
Pins and needles all over my body: Hi, I have... - Thyroid UK
Pins and needles all over my body
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Mrspmk
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Have you been tested for B12, vit D, ferritin and folate....low minerals and vitamins are charactistic of Hashimoto’s Disease...could be the likes of low B12 giving you tremors, pins and needles etc? Any other thyroid results to share?
Thanks for your reply. Not had any tests for b12, vitD,ferritin and folate. Will got to my doctors on Monday, see if I can get bloods done. Not sure about my thyroid results I got them over the phone, he didn’t say numbers. Just asked how I was feeling and if I was taking my meds as my Tsh was very high like I wasn’t taking my tablets. Looked up my symptoms on google ( I know I shouldn’t have) worried I have ms. Been too scared to go get it checked incase it is ms.
Been too scared to go get it checked incase it is ms.
Wouldn't it be better to know?
But you have Hashi's and you've been told your TSH is high. The likelihood is that your FT4/FT3 (hormone levels) are low and Hashi's can cause deficiencies or low levels of vitamins and minerals. Your pins and needles are more likely to be caused by low B12 than anything else.
Not sure about my thyroid results I got them over the phone, he didn’t say numbers.
Always get a print out of your results after your tests, ask at your surgery's reception desk. If you are in the UK you are legally entitled to them, your surgery can't refuse nor can they charge for them.
Ask for B12, folate, ferritin and Vit D to be tested. If refused, and you are in the UK, we have private labs who can do them at a reasonable price.
Thank you. Will call on Monday to make an appointment. Hopefully it’s just b12 deficiency. I never get offered printouts of my test results they don’t even tell me numbers just if I need thyroxine increased or not. Will ask my doctor about it when I go on Monday.
I never get offered printouts of my test results they don’t even tell me numbers just if I need thyroxine increased or not.
They wont offer. You need to ask. I just go to my reception desk and say "Good Morning <name>. I had a blood test for xxx last week, can I have a print out of the results please?". It's printed there and then, in my hand 1 minute later. No questions asked.
You really should learn about your condition and get your results so that you can understand what's happening and monitor your progress (or otherwise) yourself. Then if you don't feel well, you can look back at your results, how much Levo you were taking, and say something along the lines "I felt much better when I was on XXXmcg Levo, and my levels were all nicely within range" type of thing.
Will ask my doctor about it when I go on Monday.
Don't ask the doctor for a print out. Generally they don't like their patients knowing and try to put them off. Just ask at the reception desk. You don't have to give a reason for wanting them, if you feel compelled to then just reply that you'd like a copy for your own files. If absolutely necessary, if you come up against a receptionist who says you can't have them, remind her that you are legally entitled under the Data Protection Act to have a copy of your results.
Definitely ask about all those tests mentioned.
You are right I just go by what the doctor says but really need to learn more about the numbers. Got diagnosed almost 11 years ago and never get told numbers just to increase meds. Will ask at reception next time I’m in. Thanks.
It tends to be common for GPs not to test all 4, especially Vit D. Might have to do a private blood test thru Medichecks or Blue Horizon. It is important to have these four optimum, in upper part of range, for good thyroid health and conversion of T4 to T3. Ask the receptionist for results with ranges of your thyroid results, as doctors seem to be happy to just say ‘normal’ when not really, plus the fact that they often only test a TSH anyway ( if so could have rest done at lab.above at same time with active FT3, plus FT4, TSH and total thyroxin. Perhaps you are just not taking enough levo., or not converting and need T3 as well or instead.
Thanks for all the info.
Mrsmpk,
You may want to get your calcium checked too. Those symptoms are also signs of low calcium. Good luck and sending you positive thoughts.
Thank you will definitely ask to get calcium checked.
SlowDragonAdministrator
How long have you been on Levothyroxine?
What dose are you currently taking?
Dose has to increase slowly until TSH is under 2 and FT4 in top third of range
If you are still not on high enough dose of Levothyroxine, low vitamins are extremely common and often need supplementing to improve so that thyroid hormones can work better
Essential to test vitamin D, folate, B12 and ferritin.
You always need to get the actual results and ranges on all tests
Been on levothyroxine for almost 11years. Started on 25mg increased up to 75mg. Was told results were fine so was on 75for the last 7years until two months ago when doctor said it needed increased to 100mg.
Just a thought
Has your brand of Levothyroxine recently changed?
For example TEVA brand can seriously upset many many people
Low B12 is very common and often causes pins and needles
I always get different brands of levothyroxine. Currant brand is north star. What makes the brands different? I thought they would all have the same ingredients in them.
Different brands are not interchangeable
Always stick to same brand
Different brands are not bio equivalent. This means although 2 different brands state they are both 50mcg dose
Each brand will give a different result and this might be better or worse in different people
Technically you should have thyroid levels retested 6-8 weeks after any change in brand of Levothyroxine
Some brands suit different people
Most patients hate/can't tolerate Teva brand, but lactose intolerant people usually love it
My doctor said I was to get tested 3 months after my thyroxine increase. Is that too long? Interesting to read about different brands though. Is there one you would suggest to stick to or is it different for each person?
NICE guidelines say retesting after 3-4 weeks...,but patients find this is too soon
6-8 weeks as minimum. Ideally I try to wait 8-10 weeks. (More if dose is reduced)
Dr is testing me after 6 weeks without NDT to see levels.
Definitely test B12, it’s serious & are many causes, mines coeliac. Ask for antibody tests, intrinsic factor & parietal cells, although not accurate. The serum test can be in range & deficient. Mine was left untreated for years & had tingling on my face, there’s many neurological symptoms. Look at b12deficiency.info lots of great info here. Get your results & post on the B12 group mentioned.
Hi Mrspmk......I just wanted to let u know that I also had pins and needles, loss of cognition, experienced double vision and was terrified I had ms!! I am still working on getting my dose correct and my vitamins. My Drs did run the vitamin tests but I also buy the Medichecks Ultravit to keep a tab. I kept asking the Drs for a print out of my results and they have now allowed me access to check electronically so you could see if that’s possible at your GPS. I can tell you that my double vision and cognition have gone, I still get very light pins and needles in my fingers sometimes and a little in my legs and cheeks, I’m supplementing with sublingual B12 and have read that deficiency causes the symptoms you mention and also whilst the levels are correcting this can also cause sensations. As you are clearly undermedicated I would follow the excellent advice of the knowledgeable people on this site..., I know I would be totally lost without them!! 🙏 One thing I’m learning and accepting is nothing is a quick fix but knowing and understanding your levels gives you some control...one other thing is we tend to have low stomach acid so adding a capful of Apple Cidre Vinegar (with the mother) to your glass of water when taking your tablet will help absorbtion. All the best xx
I too was diagnosed 11/12 years ago. I also never asked for my results. Just took GPs word for it. I had/have tingling especially in my legs. I have severe weakness also now in my legs. Sometimes vision and balance problems.
After asking for vitamins to be checked. My B12, ferritin and folate were all too low. My D was fine. Even when below the guide line they said it was normal. I challenged my GP and now have B12 loading and medication to bring levels to optimum. You need to look out for yourself it seems.
I got a private Endocrinologist who has now confirmed that I’m not converting T4 to T3 very well. This could have been going on for years as GPs don’t test T3 which is outrageous. But they think why would they as it costs a fortune on the NHS!
I’m just waiting now for my T3 medication to arrive from Germany and hopefully it’ll be my answer.
My next hospital appointment is to rule out MS. Like you due to my symptoms I have thought do I have MS. I have seen 2 neurologist who said I have no neurological issues but when I saw them my symptoms had reduced during the waiting time for the appt. but then it all came back again with a vengeance. It’s a long story.
Without this extremely helpful site I don’t know where I’d be.
Always get your test results now and question and challenge if necessary. It’s your life and health.
It can be surprising how quickly you can learn and bring yourself back to health. Vitamins are so important. Obviously T3 is too but this can be more of a issue to get medicated.
Good luck. If you need any help on this journey put your questions on here. I’m always willing to help if I can too if you want to PM me.
I was told I had a form of MS, but it turned out my symptoms were caused by pernicious anaemia, which prevents absorption of B12.
I too have B12 deficiency. No one has said about pern anaemia though. Don’t know how to diagnose that? My B12 went to 1500 3 months ago now back to 600. Next week I’m due for another shot.
Drs should look for the cause, if you’ve had stomache surgery, gallbladder removed, Coeliac, taken nitrous oxide if deficient inactivated B12. The tests for pa are intrinsic factor & parietal cells but intrinsic should be done 2 weeks free of B12, I’m sure the other can be done on B12 but I’ve never had it despite asking few times. Mines always over 2,000 but I treat symptoms & not results, they shouldn’t be testing on injections as it will be high & some Drs then try & stop it but that’s crazy, injections are for life.
Thank you I don’t fully understand all you’ve said but I get the jist. I wasn’t sure if it was ok for B12 to go high or not. I only started with injections last year. Mine was 132 even then GP said it was normal. A Dr in hospital said I needed loading injections followed by 3 monthly ones. He also said I needed iron/ ferritin, again mine was 15 well below and my GP said normal. I’m glad I’ve had vitamins now. My vit D was repleat at 98 for some reason and not been in the sun.
Hope you’re alright presently and settling down for a nice Saturday evening 👍
Sorry for late reply, levels are irrelevant on injections I told mine no need to test now. B12 is water soluble so you get rid of what you don’t need. 132 is certainly not normal, the serum test isn’t the best but anything under 200 needs B12 injections but some over 400 do too. Most people don’t find 3 monthly enough, I do 4 a week. You need good levels of folate & ferritin to utilise B12, 15 isn’t high enough either you should be around 80. Mine was 90 last time so I stopped iron tablets but will keep an eye on it. I’m on pernicious anaemia/B12d group & there’s lots of great advice there. They will look at your results & advice you. Had a good weekend thanks, hope you did too?x
I get this really badly when my vitamin D is low. The consultant told me to look out for these symptoms after I had my thyroid removed. They should check your vitamin D, calcium and parathyroid.
Last time was about a year ago and when I got it checked my vitamin D was really low and PTH high. Been on high doses for a year now and it’s mostly gone. It only comes back when I forget to take it for a couple of days.
Thank you.
My doctors are very good at letting me have printouts, only have two ring up and find that by the time I have reached them they are waiting for me at reception. If you live in the UK you are legally allowed to have copies. Best of luck.
I have it tingling in my hands. My tsh levels are still low.
Try magnesium for twitches. It resolved mine.
“The first symptoms of magnesium deficiency can be subtle – as most magnesium is stored in the tissues, leg cramps, foot pain, or muscle 'twitches' can be the first sign.”
Thank you.
Hi, all I can ad is that I also experienced the same symptoms as you describe. But since being diagnosed and treated for Pernicious anaemia, "B12 injections every 3 months", I no longer suffer from those symptoms. It might be a good idea to get your B12 tested. Good luck.
Thank you.
I had alkaline stomach and very B12, fats and magnesium had all sorts of twinges and neuralgia and even had legs give way at times. Was tested for MS - lumbar punctures etc - and told by neurologist that it was ‘stress, so go away and don’t worry’. Ended up on Librium! Only later did an allergist say that my alkaline stomach meant that I wasn’t absorbing sufficient vitamins, including B12, and vital fats, so that my brain and nervous system wasn’t being fed. Makes sense really, doesn’t it? Still get occasional tingles etc, but not MS.
Just take the advice of the knowledgeable people on this site and soon you should feel better, good luck.
Sorry, that should have had the word ‘deficient’ in the bit about B12 etc!
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