DOCTOR BANNED MY B12 INJECTION I HAVE PA

[dannyporter]

hi i have been diagnosed with pernicous anemia 18 months ago and i have been on 3 monthly injections the whole time when i was diagnosed i was in a very bad place i had heart palpitations , blurry vison , pins and needles , negative thoughts , tireness the list gos on...i had to give up working as i coudnt cope.my iron levels had also become very low aswell. after loads of tests etc and the problems being found i have improved alot but 3 monthly injections just do not do it for me i am good after an injection for a couple of weeks or so. and then the symptons start to return i have suffererd terrible brain fog and pins and needles i have been to and throw the doctors on a regurlar basis pleading for more injections and keep getting no where. finally i took matters into my own hands and started to self inject hydrocoblim every other day to start in till i felt well i am now in a very good place with very few symptons and back at work. however due to a recent blood test showing my b12 level at 2000 due to the self injecting i went for my 3 monthly jab yesterday and was told by the nurse that the doctor as banned my injections for 6 months in which he will check my blood again to see if my level as droped signifently for him to reinstate my 3 monthly injections.as he said my level is dangerous? i am very upset as i am now finaly feeling well and need my 3 monthly as a maintanece jab to keep my level nice and high as this is working for me if i go 6 months with nothing i will be back where i started and very ill again. is this legal for the doctor to do this when i have pa? please can someone advise me what to do thanks.

[Sleepybunny]

Hi,

Are you in UK?

PAS (Pernicious Anaemia society)

I'd suggest contacting PAS. They are helpful, sympathetic and can sometimes intervene on behalf of members.

pernicious-anaemia-society....

PAS tel no [phone]

PAS answerphone so messages can be left. May take a couple of days to get a response.

There are news item on PAS website and on Martyn Hooper's blog about people having injections stopped that may be relevant to you. Links underneath.

martynhooper.com/2016/09/23...

martynhooper.com/2016/04/24...

martynhooper.com/2015/08/20...

UK B12 treatment

In UK, there are various documents that make it clear that if a person is diagnosed with PA, treatment is for life.

1) Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

2) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Info on UK treatment is about a quarter through document.

3) BNF (British National formulary) Chapter 9 Section 1.2

All UK GPs will have access to BNF. Likely that there's a copy on their desk or bookshelf.

evidence.nhs.uk/formulary/b...

It's made clear in documents above that people with PA/B12 deficiency need more intensive treatment if they have neurological symptoms. Do you have neuro symptoms?

Pins and needles is normally considered a neuro symptom. others include tingling, tinnitus, memory problems, balance issues plus others.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

"i have been on 3 monthly injections the whole time "

An injection every 3 months reads like the standard UK treatment for B12 deficiency without neuro symptoms. Did you have loading doses when first diagnosed?

UK patients with B12 deficiency and neuro symptoms are supposed to get a loading injection every other day for as long as symptoms continue to get better (this could mean loading injections for weeks even months) then an injection every 2 months.

Another B12 blog post that may be relevant.

b12deficiency.info/blog/

Lots of b12 info in pinned posts on this forum. I found fbirder 's summary of B12 documents useful. Link to summary in third pinned post.

I am not a medic just a person who has struggled to get a diagnosis.

[clivealive Forum Support]

Hi dannyporter if you are in the U.K., have P.A. and have neurological symptoms you should be getting B12 injections at least every 8 weeks according to the B.N.F. and N.I.C.E guidelines.

A high level of B12 because of injections is not dangerous as any excess is excreted via your urine.

Please ask your doctor to also test your iron and folate levels as:

"Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine".

[Polaris]

Personally, I would write pointing out the BNF guidelines on parental treatment 'until no further improvement ' as well as latest BMJ research document, (page 4) that advises the same :

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

"If there are neurological symptoms then 1000 μg intramuscularly on alternate days should be continued for up to three weeks or until there is no further improvement.4 25 In irreversible cases, for example, pernicious anaemia, the treatment should be continuued for life. "

...........

Re. high blood levels:

(bottom of page 4 under 'How is response to treatment assessed") :

" Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required".

.............

I'd also point out that you cannot overdose in B12. On the contrary, this link will show the importance of adequate treatment to enable you to return to a normal life and work.

stichtingb12tekort.nl/surve...

" The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately.

Best wishes