I was first diagnosed with PA 16 years ago at the age of 35. I was on 3 monthly injections until approx 2 years ago when I persuaded my GP that I was finding it extremely difficult to last out the final 4 weeks. I have a very demanding job and an almost 2 hour commute each way into central London 5 days out of 7. On one of my last visits to my GP for my injection he insisted that I go for a blood test before the next was due. When i went back to discuss the results he started blathering on about how i had enough levels of B12 to last me 2 years and that I should try & "last out" until approx 10 weeks preferably going back to 3 monthly injections. He then said something that totally confounded me in that a person could have "too much B12 and that it was bad for me"! i asked him somewhat tongue in cheek if that meant that i no longer suffered from PA and was I cured?? My next (8 weekly) injection is due next week and I have duly made an appointment but I suspect that my GP will no doubt chastise me for not at least trying to "last out".
It is really interesting to find that other PA sufferers in the UK also have to put up with this level of treatment by the medical profession for what is after all an extremely debilitating illness.
Oh and another thing, does everyone else agree that it is disgraceful that the vitamin itself is not exempt from prescription charges in England?
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JanineRockChick
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See page 8 BCSH Cobalamin and Folate Guidelines for details of recommended UK B12 treatment for b12 deficiency both with and without neuro symptoms. These guidelines came out in 2014. I found page 29 a diagnosis flowchart useful too.
following link has B12 treatment info based on BNF (British National formulary) Chapter 9 section 1.2
fbirder has complied a useful summary of mainly Uk b12 documents that has quotes that help to tackle some of the common misconceptions some people have about b12 deficiency. If you search his posts you shoudl find a link.
Re enough levels of B12 to last - yet another GP who hasn't kept up with latest research - see latest BMJ research document (bottom of page 4 under 'How is Response to Treatment Assessed' :
"Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. 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 continue to be dumbfounded to hear all your stories regarding treatment in the UK. It sounds like most medical practitioners simply don't believe how sick PA can make a person. There is a new med on the market here called Eligenb12. I haven't tried it yet, my next Hemotalogy appointment isn't until next month. It supposedly can be orally digested even if regular b12 supplements can't. It's a daily pill instead of shots, nasal sprays, patches, and sublinguals. Has it made its way across the pond? It may be worth looking into.
Doctors in the UK are very poor on all sorts of chronic health problems - PA, hypothyroidism, iron deficiency anaemia, endometriosis and any other gynaecological ailments, chronic pain. But they are really, really good at dishing out anti-depressants.
To be fair though, if I ever had a serious accident I'd rather be treated in the UK than anywhere else in the world. They don't stop to check how fat your wallet is before treating people.
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I'm so frustrated, I just want to scream!
Supplement Help Please
B12 Injections for PA
Would going to an endocrinologist be helpful?
Have your doctor got a right to stop your B12 injection for 6 months with pernicious anaemia.
