Stopped Injections

[Nrxx1234]

Hi.

I had low b12 and have had injections for two and a half years.

My father has pa.

Mine is due to coeliac disease.

My test for pa was inconclusive.

I was very ill before the injections.

Have been feeling almost back to normal since having them

Today my nurse said I need a blood test to see if I need them any more as no one has them for life.

Back to fighting for my health!

I had brain scans and all sorts last time that all concluded b12 defficient.

Why is this illness not researched enough?

The nurse spoke to me as if I have it for a beauty boost! So angry.

[Hidden]

Hi,

How absurd, re:"Today my nurse said I need a blood test to see if I need them any more as no one has them for life. ". Once diagnosed as severely B12 def and not caused by diet treatment is for life. But I expect its not up to a nurse to stop your treatment and I'd go to GP to get assurance that your B12 injections/ treatment will not be stopped.

Perhaps read and possibly print off a copy to give to that nurse, and if they stop injections insist on referral to haematologist, see:

British Society for Haematology's new Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders

bcshguidelines.com/document...

Recommendations

 Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).

 Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response. (Grade 2A)

I hope this helps,

Kind regards,

Marre.

[Nrxx1234 in reply to Hidden]

Thanks for your reply.

I have made an appoint to see my doctor.

I'm just angry at the healthcares lack of knowledge on low b12/ pa and how Ill it makes people.

I paid a lot of money to see private doctors to have brain scans, etc and finally get my injections as my previous gp said "everyone's b12 deficient these days"! As soon as I saw a neurologist he knew it was all symptoms of b12 deficiency.

I had a horrible feeling this would happen again one day! Back to the drawing board!

[Hidden in reply to Nrxx1234]

It should not happen..but it does, I hope its not going to be a hard fight for you. Learning to self inject helps a lot to feel confident that your treatment will never be stopped...Marre.

[Nrxx1234 in reply to Hidden]

I have thought about it but a bit nervous about self injecting.

Shouldn't have to really.

If I get nowhere I may have to think about it 🙀

[Hidden in reply to Nrxx1234]

No you should not re :"Shouldn't have to really."

[Galixie]

I'm sure you're already aware that celiac disease can cause B12 deficiency also. It is possible that the nurse was thinking along the lines that if you're are maintaining a strict adherence to a gluten free diet, your body should repair and be able to absorb B12 again. Maybe the approach to take is to remind the nurse that PA runs in your family and, until there is a test that can prove you're now able absorb B12 naturally, you need to stay on injections because you have at least one condition, if not two, that cause malabsorption.

[p101 in reply to Galixie]

Hi, I've had my loading doses for b12deficiency (last one just over a week ago) Had ct scan (which was clear) waiting on mri scan. Still have many symptoms like tingling in feet and head and numbness in legs, face and arms (not constantly - comes and goes). Not worked since jan which it's getting me down even more. Getting a scope into my stomach (have had h pilori infection before - but none of these symptoms). Saw neurologist who mentioned being tested for celiacs disease (as well as other things like Lupas and Ms through Mri) - My question is will they test for celiac during scope and do I need to make sure I've eaten or avoided gluten before the test?

[Hidden in reply to p101]

Hi p101 ,

Re:"My question is will they test for celiac during scope and do I need to make sure I've eaten or avoided gluten before the test?" Yes you have to eat gluten before the test to get the right test results and yes they should test for celiac, and H pylori, other things etc (biopsies). You can make sure by mentioning it at your appointment. I asked to have tested/ excluded: Chrohns, Coalic, H Pylori and Achlorhidria, all possible causes for B12 def.

Kind regards,

Marre.

[Nrxx1234]

Thanks. I have spoken to a few nurses and they aren't taught anything about b12 deficiency, which is a worry. I haven't eaten gluten for over ten years and this only happened a couple of years ago. I dont think the stomach repairs enough to absorb the vitamin. Hopefully my doctor will carry on giving me them.

I think it's the nhs trying to cut costs!

[wedgewood]

As regards to your question"Why is this illness not researched enough?"...... It's because the big boys in the Pharmeceutical business with the financial resources, are not interested. They are not interested because the answer to B12 deficiency lies with the vitamin B12, which cannot be patented, i.e. there are no big bucks to be made out of it.

[Polaris in reply to wedgewood]

So agree - something is badly wrong with a system run by BigPharma that encourages GPs to fund their surgeries on income from expensive drugs instead of getting to the root of patients' problems. It seems surgeries are also using the excuse of being sued for overdosing B12, whereas it is likely more people in the future will sue for having permanent neurological damage!

No wonder all the good doctors are retiring early or emigrating.

[Polaris]

No wonder you're angry. Unfortunately, most GPs are arrogantly choosing to ignore the latest research.

The nurse is wrong, as you will see this latest BMJ research document states that, in irreversible cases, such as Pernicious Anaemia, treatment is for life. It also gives info on when to refer to a specialist and a helpful summary if you think GP might listen or you could include it in a letter to the practice? It is shocking that even neurologist's advice is ignored, especially as PA is already in your family !

cmim.org/pdf2014/funcion.ph...

These guidelines also mention coeliac disease specifically as a cause of B12 deficiency :

onlinelibrary.wiley.com/sto....

Good luck

[Secondchance]

Infuriating. I had a similar situation when one GP was refusing to prescribe B12 despite the improvement I had, but fought it by bringing my husband and all the research evidence with me for a GP appointment. If you have proof of B12 deficiency, research based guidelines that state treatment should continue if there is a clinical response, BMJ paper that states treatment is not on basis of results and no other reason has been found for symptoms, then hopefully your GP will agree to continue.