Hi New Symptoms

[Angllama]

Hi I’m experiencing constant pins and needles and loss of sensation in my fingers I was diagnosed with pernicious anaemia 2022 after having Covid19 - initially my b12 was low after injections I felt better but since January this year this neuropathy has started and it’s constant -dr says my b12 is now high and that’s what the cause is ? My B12 was 792 in January he’s told me to wait 3 months before doing anything but it’s effecting everyday life -any suggestions

[Nackapan]

Do you get relief from a b12 injection?

If so you probably need a higher frequency.

Have you had other things s ruled out?

Referral to a neurologist?

[Angllama in reply to Nackapan]

hi

No they haven’t investigated any other cause -Dr just said your B12 is to high so wait 3 months then they will do blood tests -feels like I’m being fobbed off a bit

[charks in reply to Angllama]

Your GP doesn't know what he's doing. Of course your B12 levels are going to be high if you're taking B12. They have to be high to work. Most of us have levels over 2000.

It sounds like you need more B12 not less. You are developing peripheral neuropathy which can be very serious if not checked. Unfortunately, as your GP doesn't understand the situation, you are unlikely to get them from him. You could try to educate him by printing off information from the net but, in my experience, most GPs are too arrogant to read them. I think you will be forced to self medicate like most of us on this forum.

[Nackapan in reply to Angllama]

Try and go by symptoms not b12 levels. Gps go by numbers .

Once on injections levels are supposed to be high.

Testing levels not advised .

You know your body and your response to the b12 injections .

I got worse before better .

Waiting 3 months is too long

Get back to your g.p

[Pickle500]

Most people needs levels up to 1,000 consistently to heal all the symptoms. So you probably aren't getting enough, just 'normal range'.

But you could also be experiencing reversing out syndrome.

This is where your body starts to heal up the damage from a lack of B12 by making symptoms worse before they get better. Many people on the forum have experienced a worsening of symptoms and in particular neuropathy. I know that I had horrendous burning and sharp pains in my arms and hands as the nervous system attempted to repair itself from years of under nourishment and a toxic gut.

This article may help:

b12d.org/b12d/submit/viewbl...

Whether it washes with a GP is another matter. Sometimes they can stop the injections if you say you feel worse, so as it's been suggested you may need to consider taking things into your own hands and supplementing.

You could try sublingual but really every other day injections are best, if you can get hold of Hydroxocobalamin to do it. My levels have been in excess of 2,000 for about 2 years now.

[WIZARD6787 in reply to Pickle500]

Hey Pickle 500. Thank you for that link!!!! I had actually read it when went in the throes of B12 deficiency and only took in part of it.

[WIZARD6787]

I believe if I had injected hydroxocabalamin every other day 2 1/2 years ago and not spend my energy trying to find a a GP and other causes I would have avoided much suffering. I also would have taken no risks by injecting twice a day.

[Orchard33 in reply to WIZARD6787]

Thank you everyone for this thread. It's put the level of B12 into perspective. A recent blood test for other issues showed B12 at 1100. My GP didn't query it other than to confirm I was having injections. Of course, I have a lot more than the GP prescribes through self-injection. Your comment, Pickle, about your 2000 level has encouraged me to continue with my weekly regime which will and is having a restorative and repairing effect.

[Technoid]

Waiting is a terrible idea. You doctor is offering phenomenally poor advice. The longer that neurological damage continues , the more difficult it will be to heal or reverse. Testing after treatment starts cannot determine the success of treatment, only the alleviation of symptoms is useful to determine effectiveness of treatment.

I've never heard or read of a single proven case of excess B12 causing neuropathy although B12 supply to nerves that were damaged can cause an increase in symptoms as the nerves repair and signals about the state of damage start being relayed. Although other causes for the neuropathy should be ruled out, you can be very confident that excess B12 is not causing them (there is no recorded case of that in the medical literature that I know of), and regardless of the blood serum B12, you still might not be getting enough.

[Angllama]

Thankyou everyone for your replies . I thought it was bad advice and the longer it’s continued the more I’m feeling I need a second opinion .I’ve got an appointment today so fingers crossed . Thankyou all for your advice hopefully I can get it sorted out and get my hands back 👍🏻

[B12life]

what was your original b12 level.

as others mentioned, b12 is required to generate cells. When deficient, we stop regenerating cells, a process that our body does frequently (perhaps daily). When doing injecitons, the supply of b12 to the nerves will cause the nerves to come alive. For me it was aching pain throughout my entire body all the way to the bone. That lasted for 1-2 months while doing EOD injections. then things got better. this is what my experience was and then I realized what it meant for me when people say, "it gets worse before it gets better".

For me I had constant tingling in the hands and feet before the injections and until about 6 months - 1 year of injections. I no longer have this.

[Sleepybunny]

Hi,

Apologies for quick reply.

Some forum members turn to treating themselves as a last resort if NHS treatment is not enough for them. Some get extra b12 injections from private GPs, some get injections from beauty salons, some try high dose oral tablets but these don't work for some people and some turn to self injection.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

I'm not medically trained.