Nerve Pain: Hi, Would anyone know if I can... - Thyroid UK

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Nerve Pain

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Hi, Would anyone know if I can "insist" on having B12 injections at my GP Clinic? (Not that I'm the bossy type lol) but I've just been prescribed Levothyroxin for "Boarderline" hypothyroidism ( doc thinks it might help symptoms I've had for the last 3 yrs !! especially the last 3 months since Op)  my iron & Vit d are low, doc prescribed supplements for those, but my B12 is 200 ng/L, I did mention I was concerned about this as I understand that being insurficient can cause nerve pain which I've suffered with mainly in hands for the last 3 yrs & now had 6 Operations for in the last 2, to no avail :( but in fact the 2 GP's (1 in November) I've approached re b12 have not seemed concerned.  I'm having another blood test in 4 weeks or so by which time the above Vits should have kicked in, if my b12 is still low & I still have symptoms then surely some Doctor somewhere amongst all my visits can do something?  Another concern is when I've tried the b12 Spray & various other supplements i.e, cherry juice, flavoured protein drinks, krill oil caps & red clover to name a few, I've had terrible flare ups, could this happen with b12 injections? Many thanks 

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19 Replies
bluebug profile image
bluebug

You cannot insist on anything on the NHS. If your B12 is within the lab range you will not get treated. The b12 deficiency group has more information on self injectable B12.

BTW make sure you stop taking the iron, vitamin D and b12 24 hours before your blood test so you get true blood levels.

greygoose profile image
greygoose in reply to bluebug

You have to stop the B12 for four months before a blood test to get a true level.

bluebug profile image
bluebug in reply to greygoose

The blood B12 test isn't actually any good for a lot of people who have B12 deficiency symptoms. You need an active B12 test to see what is taken up in the cells. 

The idea of stopping supplements 24-48 hours before testing is to ensure that you don't get abnormally high readings.

greygoose profile image
greygoose in reply to bluebug

Uum... yes, I realise why you stop taking the suppléments, but once you are supplementing B12, the normal blood test will be skewed unless you stop for several months.

I've also heard that the active B12 test isn't that good, either.

bluebug profile image
bluebug in reply to greygoose

True.

Unfortunately most doctors in the UK seem unable to treat people on obvious B12 deficiency symptoms.

greygoose profile image
greygoose in reply to bluebug

Because they Don't know anything about it. They didn't do it in med school, and what they Don't do in med school, doesn't exist!

It's the same here in France. My last doctor said B12 was irrelevant and didn't want to do the test. I insisted. It was 350 and he said it was 'perfect'. But I was losing the use of my right arm, and my head twitched! I treated myself and my arm got better. They know nothing about it! 

bluebug profile image
bluebug in reply to greygoose

I've personally noticed the most useful medical practitioners have an interest in sports medicine, and as the research is always being updated they are more open to new ideas.

So now I always recommend if people have something wrong with them to find a physio or whoever they need  who has an interest in it. Unfortunately with GPs in the UK the rare younger ones who are, leave general practice. So you get stuck with the older ones who think some sports medicine research that has finally filtered into the mainstream is current,  when it's found to be no longer significantly relevant.

greygoose profile image
greygoose in reply to bluebug

Same in France. One GP actually said to me 'well, you probably know more about this than I do. I Don't have time to sit and read the latest research, so we'll do it the way I learnt in med school!' I cannot tell you what happened to that doctor...

tingles profile image
tingles

In my humble opinion you b12 level is far too low. Join some of the b12 forums and seek help there. Mine used to be 198 and i've now got permanent nerve damage in my feet, my arm used to tingle and fingertips were losing their nerves. I strongly recommend buying the book by Sally pacholok."could it be b12?" It's a life saver. Good luck

lynnwin profile image
lynnwin in reply to tingles

That book is brilliant 

Treepie profile image
Treepie

Try Jarrows B12 from Amazon .You can get it in various strengths.Place under tongue to dissolve.I would suggest starting with 5000 a day but may be safer with the 1000 tablet if you get reactions from other supplements.

Secondchance profile image
Secondchance

If you are being retested and want any hope of getting B12 injections from GP then please don't take any B12 supplements before then. More advice is available including guidelines for treatment B12 on the pernicious anaemia forum. Good luck! Ideally with those symptoms and that level you should get treated by injection. 

Thank you everyone for your input it's much appreciated. I won't take the B12 until the next test (as much as I'm tempted & thought for a long time this could be the reason/cause of my pain!) that, or hormones? But I'm not the doctor!!  I've just picked up the Vit D from chemist, it's Colecalciferol 20,000 units caps, 1 weekly, I'm a bit apprehensive in case I feel worse before I feel better... 😬 lol. Should I be?.. As noted above some supplements cause me flare-ups & I've been in constant pain since taking the Levothyroxin, hopefully as Clever suggested it could be because my body's absorbing what it's been missing? Thanks again.

bluebug profile image
bluebug in reply to

Some people who are deficient in vitamin D and take a high dose vitamin D tablet experience bone and muscle pain the day after they have taken it.

I submitted a yellow card for it after finding out I was not the only one to experience it. 

If you do,  you would be better off to buy your own tablets from an independent pharmacist or you can get them from somewhere like Chemist Direct online that are 5,000IU. Take them daily with vitamin K2 and magnesium. The vitamin K2 is to help ensure you don't get kidney stones.  .  (I've had issues with some of the tablets I've brought on Amazon.)

You will be taking more than what the doctor prescribed but to be honest when I was deficient I was advised by an MS suffer that the Nurse Practitioner and GP who had advised me weren't up to date with present research. I then saw another GP in the same surgery as the first GP and she had no problem with the amount I was taking.    Once you get your vitamin D levels into the optimum range then you can reduce your dose.

BadHare profile image
BadHare

Hi,

I've had parenthesis for several years, following chickenpox & developing FM. I've found it lessened when I started taking NDT last year, & increased my intake of magnesium, D3 & B12. I drink kefir every day for the latter, which has improved my digestion, & hopefully, absorption. 

M*

mcenerny profile image
mcenerny

B12 has helped me, but usually the injections you are given are the cyanocobalamine (which is cheap) instead of the methylcobalamine which does not have to go through the liver to be utilized. The cyano works, but takes longer as it has to be processed to work and puts additional work on your liver and that can cause some problems if it is already overworked with detox chores.  Have you tried sublingual ?- make sure it is methylcobalamine B12 which does not produce cyanide as an "bonus".  Where I live I can buy the injectable B12 and I have used a very fine diabetic syringe to inject it intradermally instead of muscularly (no pain).  Being diabetic, I know all about the neruopathic pain!  The B12 does help, but I got the most relief from R Lipoic Acid capsules (which I break open and squirt under my tongue to get some into the cells without going through  he digestive system. 

helvella profile image
helvellaAdministratorThyroid UK in reply to mcenerny

Just for clarity...

In the UK it is usual to be prescribed hydroxocobalamin injections. (It is not impossible to get cyano~ or methyl~ but standard NHS treatment is hydroxocobalamin.)

mcenerny profile image
mcenerny in reply to helvella

Good to know!  I am not in the UK, and did not know about the hydroxocobalamin.

in reply to mcenerny

Thank you for your reply, you have educated me lol I've just looked up Sublingual" meaning under the tongue? The b12 spray I tried had to be squirted in the side of the mouth, (but caused major flare-up) so no I haven't tried it, then I looked up R Lipoic Acid which was very interesting, I'll speak to the girls at my local alternative health shop as I wouldn't order Vitamins off the internet unless they were/are highly recommended.  The K2 I looked at today was £26.00 think the make was Salgar? Is that about right? Thanks again & hope your not suffering too much. 

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