Worried Son

[IPM1970]

I'd like to know if other members have had B12 injections taken away from them by their GP? My Mum was diagnosed with Pernicious Anemia over 20 years ago and was told that she will need B12 injections for the rest of her life by the Consultant in Haematology. Last year, her GP took them away from her and she nearly died. We got a new GP who gave her immediate booster injections of B12 and she cam back to life quickly. We will never know the damage that it caused, but were relieved. We got her a new GP, who has just advised her that the injections have again been removed and I know what will happen next. She has no Intrinsic Factor and green vegetables cannot be absorbed. Really scared and worried and any advice would be welcomed.

[Gambit62 Administrator]

unfortunately, particularly at the moment, many patients seem to be having their injections removed. GPs just don't understand how important they are.

Not sure what you mean about green vegetables - B12 isn't found in vegetables - it is found in animal products. Folate is found in green vegetables and its very common to have folate absorption problems as well as B12 absorption problems.

Are you in a position to find out exactly why your mothers injections have been withdrawn? Is it related to COVID-19 or is it a stupid response to a post-injections check on serum B12 levels? or something else entirely

This is a link to current advice on treatment of patients with B12 absorption problems during COVID-19

b-s-h.org.uk/media/18275/bs...

There is also this page on the PAS website about treatment during COVID-19

pernicious-anaemia-society....

[IPM1970 in reply to Gambit62]

Thank you for the response. I'm requesting a meeting with the Doctor to discuss. I've seen the Covid stuff, but no explanation has been given yet. As far as I can understand, there's only one way to deal with Pernicious Anemia, but Mum has been told to eat more greens in the past, despite having no Intrinsic Factor?! Her last injection was in March, so I'm very concerned. It's like the Doctors don't understand the condition? They appear to be worrying about high levels of B12 in her blood, which could cause me liver damage, but not my Mum. If she is not alone, then I am more worried. I'm a socialist, who believes in the NHS, but can I get this privately?

[Hidden in reply to IPM1970]

Good morning you can get your own b12 to inject privately most of us here do this,we get the b12 from Germany and he needles and syringes from Medisave in the U.K.,you can also print off Info to take to the gps but most of them don’t even look at it in my experience so force us to be pro active in treating ourselves sadly.

You could go on to the pernicious anemia website and you will get lots of info there and if you join they will help you with great advice and will sometimes liaise with your gp.

Your a good son to look out for your mother like this everything we do Is a battle which drains us of b12 even more so so well done I’m sure your mother is proud of you,I would be.good luck.

[Hidden in reply to Hidden]

Ps I have high levels floating around in my blood and that’s the problem,it’s not getting into the cells where it’s needed so when we inject,I do every other day,then by flooding the body with b12 some of it manages to trickle into the cells where we need it and the rest is peed out,sorry,our bodies cannot store it and because it’s water soluble we cannot overdose.

[Gambit62 Administrator in reply to IPM1970]

yes, GPs can have a poor grasp of how B12 works - as do many of the specialists.

High B12 does not cause liver damage. It can be a symptom of liver damage, as the damage can cause the liver to dump its stores of B12 - so getting things a bit back to front. High B12 can also be associated with kidney problems but this is because the kidneys play a major role in removing excess B12 from the blood so if that isn't working excess builds up.

There is no known toxicity from B12 and it is used (hydroxocobalamin) as the treatment of choice because of this and low incidence of side effects for the treating cyanide poisoning by administering 5g (that is 5000x the amount your mother receives in an injection) intravenously with a possible follow up dose of the same 30 minutes later. The risk area with this treatment is hypertension because of the volume of fluid going into the blood with the B12.

High serum B12 can cause a condition known as 'functional B12 deficiency' where the patient has high serum B12 but all of the symptoms of B12 deficiency. This seems to be a result of a reaction to high serum B12 that makes the process of transferring B12 from blood to cells much less efficient. This can be treated very effectively by raising serum B12 levels even higher as it is about efficiency of transfer - like raising water levels in a dam so enough trickles over the top. This is probably a major contributor to the fact that many patients needing treatment for a B12 absorption problem report needing to maintain serum B12 levels well above the normal range post loading shots. Mine are permanently above the measurable range. The process also seems to make the mechanisms that would normally remove B12 from the blood less efficient as well meaning that levels stay higher much longer. People vary a lot in how long it takes an injection to clear the system and when they were first looking at this they found that the average time till levels fell down to normal and below (in the case of people with absorption problems) was 2 months for hydroxocobalamin but in some patients it was 4 years or more!

So,

the fact that your mother has had B12 injections is most likely to be the cause of her raised serum B12 levels.

the fact that your mothers serum B12 levels are high doesn't necessarily mean that her cells are getting enough B12. The BCSH guidelines don't recommend further testing of serum B12 post loading shots as they recognise that the test is nigh on impossible to interpret in a meaningful way in those conditions.

onlinelibrary.wiley.com/doi...

High B12 isn't a cause of liver damage - it is a potential symptom.

I would have serious concerns about any GP who is advising a patient with a B12 absorption problem just to consume lots of green vegetables - this is a source of folate not B12, though it is true that people with problems absorbing B12 do have problems with other micronutrients - notably folate and iron - and may need to supplement.

Although most of your B12 is absorbed through the ileum there is also some general absorption throughout the gut but at much lower levels of efficiency. It averages about 1% but for some people is much less than this. The result is that for some people high dose oral can help - but this is doses of 1000mcg+ (I take about 8mcg daily), which is why some people are being switched to high dose oral - but because it doesn't work for everyone there are real caveats about on-going monitoring ... and to be really effective it should start immediately after a B12 shot.

I hope you are able to have a constructive conversation with your mother's GP

[nano2 in reply to IPM1970]

You may find your mum’s GP not wanting to discuss her medical problems with you. I suggest if mums willing get her to write a letter & sign to go in her file allowing you to consult with them. I had this problem last year with my Daughters GP.

[Woodswefn]

It is easy to self-inject. B12 does not harm the liver, as others have said. It is only hard on the kidneys if a person has advanced kidney disease. If you are tired of arrogant, ignorant doctors, you may have to take charge: read up, buy the B12 (methylcobalamin), and help your mum learn to inject at home. The first website includes a free book written by a retired UK doctor who is an expert on B12 deficiency. The next is a source of methylcobalamin. The last is a fabulous tutorial on giving yourself B12 injections.

b12d.org

oxfordbiosciences.com/purch...

m.youtube.com/watch?v=YUTMR...(Not working as expected?)