Anyone else with peripheral neuropathy?

Have had the dreadful pins and needles since being hypo in January and still not letting up despite blood tests back in range or even a little hyper according to last result a month ago. Have always had very severe symptoms and wonder will it just take my body a long time to heal now? I used to get the pins and needles in face but that has eased up- now in my hands and feet. Calcium , b12, etc all looking ok too. Anyone else taken a long time to see symptoms resolve ???

14 Replies

  • Also thinking of trying accupuncture for this. Any one tried this?

  • Peripheral neuropathy can be a symptom of low B12. Usually B12, folate, and a full blood count are tested. Post all results here. NHS does serum B12, not the Active B12. Serum B12 is the total amount in the blood stream, Active B12 is the amount actually getting to the cells. When you are tested it is not enough merly to be in range but high in the range, above 500, and the higher the better.

    I expect you know that you are entitled to copies of blood tests, all you have to do is ask GP.

    These mean you can post results accurately along with the vital ranges as each lab differs.

    Please never depend on a doctor saying results are "fine" or that you were "little hyper" a month ago.

    Who said you were "hyper"? What was the evidence for this statement?

  • Thanks for the reply. B12 327(180-740), folate 941(>630).

    TSH 0.2(.5-4.5), ft4 24(10-20),ft3 5.7(3.5-6)

    Always hard to work out what is going on with this dreaded disease that's for sure!!

  • your vitamin B12 is low! yeah, in NHS range but LOW, anyone with a B12 less than 550 can still be deficient and anyone with a B12 less than 350 is 'very dodgy'.

    If you can get an 'active B12 test' done via St Thomas' Hospital in London that would be great, it is a lot more accurate. Failing that just self-treat by taking Jarrows sublingual methylcobalamin (vitamin B12 that is) 5000mcg daily.

  • Thanks so much for replying! I'm an Aussie girl so testing in London could be a little challenging!!! Will get my hands on a supplement and see if that helps things. Is b12 safe to take? That is , do we just pee out any excess????

  • if you don't have Leber's disease then it's safe :D

  • Is that a building dose? Unless you have specific absorption issues (like my mum who takes Metformin) I'm not sure you need that much all the time. My B12 was around 300 when originally tested. I only take 1000mcg in tablets that you swallow and my level is now over 1100. I know it's safe and you flush out any excess but it seems like a waste to me!

  • Once your levels are very good (i.e. above 500 several days after your last B12 dose) then 1000mcg is enough as a maintenance dose. I am still taking 5000mcg though. Even a few days of missing my B12 causes my symptoms to return, including debilitating vertigo. I think I have issues around B12 but I can't get tests :(

  • The Jarrows works really well. I know this because after nearly a week of not taking it (forgot to order more before running out) my vertigo returned with a vengeance for the first time since taking the B12. Now that I've been taking it for a couple of days again, the vertigo has pretty much gone. It did make the bouncy castle at school a bit tricky to get off!

  • As nobodysdriving says, your B12 is far too low. Not only that but your folate is quite high. Now, there's not normally a major issue with high folate if you are supplementing, but there is if you don't have enough B12. In fact it can cause neurological damage having too much folate and not enough B12. Hopefully taking a strong sublingual B12 supplement, such as the one nobodysdriving recommends (I take that one) should help. It has got rid of my vertigo and stopped the tingling and pins-and-needles. I do seem to have some permanent loss of sensation in my big toes though :(

  • Also, good folate levels can mask the symptoms of a B12 deficieny.

  • Thanks for all your great info Carolyn. Very much appreciated xxx

  • My pins and needles in my feet have came on quite suddenly 3 days ago and I've now got numbness all over my body, apart from my head, shoulders and arms. a headache and dizziness. I'm really worried and I hope the symptoms don't linger and resolve quickly. how long does it take for an acute problem to become chronic and then permanent? My gp told me over the yesterday to make an appointment over the next week or two, he can't possibly know the cause. I'd rather phone again today with worsening symptoms and be a time waster than suffering a stroke or tumour. Medicine after all is never an exact science!

  • I've put lots of links for this in another answer this morning if anyone on this topic is interested, see here:!/#thyro...

You may also like...