What should I do please?

[Moutie]

I had a gastric bypass 7 years ago. A routine blood test showed my B12 level was 195. The GP said, "Take iron tablet's". I was unable to function properly with fatigue, dementia symptoms and I felt like I was dying. I saw a private gp who checked my results and said that I needed B12 injections. After 2 injections my B12 level is now 1448. What do I do now? Change GP surgery? I am paying £40 per injection. I could use some advice please.

[Sleepybunny]

Hi Moutie,

Welcome to the forum.

Do you mind me asking which country you are in?

I'm asking because patterns of treatment for B12 deficiency and the type of B12 used in treatment can vary between countries.

If you're in UK, there should be some useful info in links below.

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 films, 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...

I am not medically trained.

[Moutie in reply to Sleepybunny]

I am in the UK

[Gambit62 Administrator]

It is a bit shocking to hear that a GP recommended iron to deal with a B12 deficiency - falling a long way short of duty of care and professional competence on that one.

Suggest you right to the practice administrator pointing out that you had gastric bypass 7 years ago and when your B12 was found to be low you were told to take iron tablets, with no advice being given about B12 and the need for injections.

This is a link to BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders.

onlinelibrary.wiley.com/doi...

Table 1 includes gastric bypass surgery as a cause of B12 absorption but unfortunately it is very rare to see patients who have had this type of surgery monitored for B12 absorption issues.

The guidelines make it clear that the treatment you need is injections for life. Subsequent monitoring of B12 levels is not necessary. The standards haven't been updated but there has been a change to the BNF rules around use of hydroxocobolamin so they now state that if there isn't any neurological involvement injections should be given every 8-12 weeks. If there is neurological involvement then it should be every 8 weeks. Injections should not be dependent on serum B12 levels which are at best difficult to interpret after your first injection - if not utterly impossible.

I would suggest that you write - preferably to the adminstrator of the practice rather than just changing practice because there is no guarantee that another practice would really be any better and there may be a GP at the same practice who would treat you correctly.

Very sorry that this has happened to you.

[Sleepybunny]

Hi,

I suggest you track down the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board.

They may mention gastric bypass surgery.

If you can't find them online, you could submit a FOI (Freedom of Information) request to your ICB or Health Board that asks what B12 deficiency guidelines are used locally and for a copy of them or a link to them.

I suggest you also look for local guidelines on after care for those who've had a gastric bypass.

There may be something useful in documents below.

Some details may be upsetting.

NICE guidelines - management of obesity

nice.org.uk/guidance/cg189

This is the section on follow up care after bariatric surgery.

A gastric bypass is a type of bariatric surgery.

nice.org.uk/guidance/cg189/...

NICE CKS guidance - B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.

If you have time, have a look at this thread I started about Patient Safety.

healthunlocked.com/pasoc/po...

It has lots of useful links for people who've had difficult experiences with health professionals.

[Hockey_player]

If you just had a B12 shot, your level can register as abnormally high, but it is not a problem because you know that the cause is that you just had a B12 shot and not something else that is insideous. My husband gives me B12 shots, and the cost is very low. Maybe $20 Canadian for a 10 dose bottle of B12. The B12 should help with the fatigue and dementia. It really helped me.