Reduction in B12

[sbotwright]

The nurse has reduced by B12 injections from every 3 months to every year. Has this happened to anyone else? They said my B12 count was 2000 when It should be 900 - 1000.

[shevie]

They shouldn't even KNOW what your B12 level is. BCSH guidelines clearly state that NO further serum tests should be done once replacement therapy begins. This is because your liver GRABS part of each injection for future use and so the readings will forever be artificially high. However, with PA or functional B12 deficiency those stores are of almost negligible use to you. They will gradually degrade, pass out through your urine and be lost forever. Go to the internet, print out the BCSH guidelines, take them to your surgery, hand them in with a covering letter. In that letter tell them they are being negligent in withholding your B12 injections and that you will hold them responsible for any deterioration that happens as a result of their failure to treat you.

[maycov in reply to shevie]

Your B12 levels are probably above 2000, this is the maximum range on blood tests. I agree that they should not test your B12 levels when having maintenance B12 injections, but mine seem to as well. My levels are always over 2000 and I still have B12 injections hydroxocobalamin every 6 weeks, when GP's cover for nurse they have both tried to change them to 3 months but I have insisted they keep at 6 weeks. Recently I have found that the injections no longer last, when I have asked both GP's to increase them they always refer to my high blood levels as a reason not to increase them. (could this be the reason why they repeatedly test levels!) I have recently started to self inject. It is something I was not comfortable doing, and still feel I should not really be doing it, but with help from members on here I took the plunge and have been injecting hydroxocobalamin every other day since last week. The difference has been very noticeable, clearer thought processes, more energy, less anxiety. I have even managed to go on walks with my husband and dog, something I was unable to do. I am just hoping that it will last. Have they found out the underlying cause of your B12 deficiency, they never bothered doing this for me. The following link to NICE guidelines is useful cks.nice.org.uk/anaemia-b12.... Treatment can vary, I do not know how long you have been having B12 injections, diet related or not, neurological involvement or not? They should not decrease treatment just because of increased B12 levels in the blood. I would also discuss this with your GP and insist on treatment per the guidelines. Do not accept anything less!

[sbotwright in reply to shevie]

Thanks very much, just found this reply. Can't navigate properly on this site. Get confused with the "brain fog". Thanks very much indeed for your help

[Gambit62 Administrator]

Sorry you find yourself in this position.

High B12 levels aren't a danger though GPs can frequently have a blind spot on that. There is a correlation between being on B12 therapy and higher rates of cancer and larger tumours but no causal link has ever been identified and it is much more likely it was a cancer that developed whilst the patient was B12D but unfortunately the B12 also helps the canerous cells to reproduce quicker as well as healthy cells.

You are on B12 therapy because your body has a problem absorbing B12 - although the body also recycles B12 - through storing it in the liver - the recycling also relies upon absorption in the ileum which isn't working or you wouldn't have become deficient. So, you aren't going to be able to recycle the B12 you have so, as Shelvie says, it will all pass out of your system.

Serum B12 doesn't really mean a lot after supplementation starts unless the levels continue to be low.

In theory a B12 shot contains enough B12 to keep you going for 3 years but it is unlikely to last that long - the rate of loss is much higher if your B12 serum levels are high ... which leaves me wondering at what point they actually did the blood test - was it before or after your maintenance shot? If after, even a week or a month after, then it is doubly meaningless.

The serum B12 test doesn't say anything about what is happening at the cell level and also says nothing about how well your body is doing converting the hydroxo to a methylated form that is used at the cell level ... so triply useless.

Hope that referencing the BCSH and NICE guidelines about not needing to test levels after therapy has begun does the trick.

You might also want to contact the PAS directly as they have a specialist nurse and can actually speak to GP etc on your behalf in circumstances like this and may have more clout ...but you would need to join first.

[sbotwright in reply to Gambit62]

I last got an Injection in September 2014. I had a blood test two days ago resulting on them informing me I have a blood infection. Before that, my previous blood test was in December 2014 and previously May 2013. The reason for the big gap was their neglect to inform me my fasting blood test was due. I am increasingly confused and don't know what to do foir the best. I have joined the PAS and ordered the book entitled Living with Pernicious Anemia hoping to shed some light on the subject. Thanks for your support and reply.

Kind regards

Sandra Botwright

[Sleepybunny]

Hi,

I've assumed you're in the UK.

I urge you to contact the PAS (Pernicious Anaemia society) about your injections being reduced to one a year. I think the chairman would be very interested.

In some cases the PAS will intervene . If you leave a message they will get back to you.

pernicious-anaemia-society.... Head office: 01656 769 717

The library section on the website has some useful symptoms. There is a section for medics on the website which your GP might want to read.

Do you have any neurological symptoms? Have a look at these lists. I have given my GP a list of all my neuro symptoms.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

The b12deficiency.info website also has a section on writing to your GP if you are not happy with your treatment along with examples of what to write. Your mp may also be worth contacting over this issue.

b12deficiency.info/b12-writ...

Has your GP checked his/her copy of the BNF (British National Formulary). The info is in Chapter 9 section 1.2. The BNF is copyrighted. You can get your own copy if you want to.

My understanding of the treatment guidance for b12 deficiency with neuro symptoms,is that a sufferer should have an injection every two days until they stop improving (this could mean loading injections for a period of weeks even months) then an injection every two months. I think the same info is in the BCSH Cobalamin and Folate guidelines that Gambit mentions. Page 29 of the BCSH Cobalamin guidelines is a diagnosis flowchart that your GP might find useful.

As far as I know the NHS should now be following the recommendations in the BCSH Cobalamin guidelines.

If you have neuro symptoms did you receive the correct loading doses at the start of your treatment?

Useful books

Could It Be B12 by Sally Pacholok

Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

Living with Pernicious Anaemia by Martyn Hooper

Martyn Hooper's blog has some interesting entries. He sometimes talks about the sufferers he has helped.

martynhooper.com/

[sbotwright in reply to Sleepybunny]

Thanks very much for your help. I will discuss this with my GP next week. I have developed an infection of the blood now. Just found out today. I am really worried I have damaged my body inadvertently. I will keep you informed of my progress in this matter. Thanks once more for all the information you have supplied.

Kind Regards

Sandra Botwright

[sbotwright]

Update: got blood test for my B12, still no injection given