So tired of fighting

[Parksy]

Ok so here I go again in a fight with my GP to get my 8 weekly injection which denied this morning. They have decided my levels should be normal now so won’t give me anymore until further blood tests. My last fight with GP was only 3 months ago. Can one of you really knowledgeable people please remind me why the serum blood test isn’t a true reflection of b12 levels. I’m actually thinking of suing my practice because it’s their negligence that has left me with no feeling in my hands, feet, balance issues, eye problems etc. I’m exhausted abs not got the energy for this fight yet again. Thanks in advance.

[Nackapan]

Look up about retesting not necessary once on Injections . I think BSH.

As Bnf guidelines give frequency. in one of fbirder s responses the source of no more testing needed I'd stated.

if you put it in topics on the magnifying glass at the top. It will then give relevant posts.

Also if you look through all the links sleepybunny posts.

If a PAS member they can help you.

I'm sure someone will be along soon.

Recently my daughter was trying to get 8 weekly injections rather than 12 weekly. A gastro consultant put it in a letter. The Gp has granted 1o weekly!

A neurologist put it in writing for me to keep my b12 levels up on very regular injections.

Are you under a consultant that would support your need for injections?

I know you need to fight this but have you considered SI on prescription or buying it?

[Kazania in reply to Nackapan]

Magnifying Glass in the search box, I can’t believe I never noticed that!!!!

[Queeniz]

I know how you feel 😿

[Kazania]

So sorry that you have to have a struggle each time, I know what it’s like. Nackapan’s advice re ‘no neccessity’ to retest once on injections is what you need. The level of ignorance about PA is appalling, when one is ill it shouldn’t be necessary to have to fight every time. I gave up in despair, (after writing to the GP with references etc) I continue to go for 10 weekly, which is the best I could persuade them to, and started doing injections myself in between. However, beware as the nurse once refused me when it came out (after an unrelated hospital visit) that I had just recently done one; it almost reduced me to tears but I managed to fight it off. Also someone else will no doubt give you the relevant link regarding neurological damage, which requires more frequent injections. Can you get someone to go to an appointment with you to help you argue your case. Do take care and I hope you get sorted soon.

[Cherylclaire Forum Support]

I'm not by any stretch of the imagination a "really knowledgeable" person, but I would be asking your GP the following:

-Why was your B12 level low initially ? (.. helps if it was very low, but below range will do !)

-Why does s/he believe you can maintain a falsely elevated level ?

-Why is B12 level being checked after injections have started ? (the only excuse for this would be if GP suspects a functional deficiency or a continuing low level, otherwise pointless )

Serum blood test will measure the B12 in your blood, which does not tell GP anything more than that the injected B12 is in your blood. It cannot distinguish between active or inactive B12, and it cannot indicate whether this has had any effect at cellular level.

Assuming you are in UK:

NICE guidelines and advice for those in the medical profession (from 8/5/2017:

cks.nice.org.uk/anaemia-b12... on treating those with vitamin B12 anaemia with neurological involvement:

"initially administer hydroxocobalamin 1mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months" - which is quite unequivocal.

It also states that ongoing monitoring of people being treated is not necessary. Although it does say that when the condition (B12 deficiency) has improved sufficiently, the dose will be reduced, it does not say from what frequency to what frequency, so presumably this advice would include the alternate days to every 2 months suggested above for those experiencing neurological symptoms, since it goes on to say that "some people will require regular injections for the rest of their lives." No feeling in hands, feet and balance issues surely suffice here.

The British Journal of Haematology (Guidelines for the diagnosis and treatment of cobalamin and folate disorders, vol 166, August 2014: onlinelibrary.wiley.com) admit to "no "gold standard" test to define deficiency" but in spite of that are happy to recommend that "treatment of established cobalamin deficiency" follow the BNF schedules.

Here's where I don't possess a recent hard copy and memory not great, but I believe that BNF currently (since 2014 ?) advise injections every 2-3 months. I'd check that though !