Pernicious Anaemia Society
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Frustrating!

I had an appointment with a haematologist yesterday, I had MMA and homocysteine tests in November. Homocysteine came back normal but MMA came back abnormally low, so this is being repeated in April. She said that she couldn't increase my injections as "B12 contains cyanide, which can build up in your body!" I bit my lip as in the next breadth she said that she wouldn't stop my 3 monthly jabs though.

As she doesn't think my memory loss/foggy head, pins and needles and numbness in my feet have nothing to do with low B12 she has written to GP for referral to a neurologist. More money wasted! I feel that if GP'S could handle B12 deficiency, understand the symptoms and realise that everyone is different it would probably save a lot of money and time!

I find it so frustrating, especially when I first went to GP and described my symptoms as he called me in because of blood results, macrocytic anaemia, low folate,low iron and of course low B12! He look puzzled at my list of symptoms and as I knew nothing about B12 deficiency (I now know that neither did he!) he kindly printed off a fact sheet about it. The NHS choices page listed all my symptoms! I've seen a cardiologist, gastrologist, haematologist and now being referred to a neurologist! All I ask of my GP is to follow guidelines and increase my injections!

Rant over (for now anyway)!

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greenbexy, I totally agree with you! If I had been given B12 injections at the start of my journey, it would have saved the NHS hundreds of pounds, and that was only in October. I still haven't had injections, waiting for a Haematology appointment, and an Immunologist!!!

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That is annoying, it surely should be a fast track appointment as injections should be administered immediately!

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Perhaps I should show myself to your haematologist as I've had over 600 injections of cyanocobamalin B12 during the past 46 years and I'm still "clivealive" and over 75.

I was given "two years to live" by my then doctor when P.A. was eventually diagnosed in 1972 - unless I either ate raw liver three times a day or cyanocobamalin B12 injections every four weeks for the rest of my life.

I think they must be working.......

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Thanks clivealive, I sure I've read that it is used to treat cyanide poisoning too!

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Hydroxocobalamin is indicated for use against cyanide poisoning as it substitutes out the hydroxo group for the cyanide group in your system. You'd only be getting the extra dose of cyanide if you are on cyanocobalamin. Wouldn't surprise me if the haematologist has failed to grasp fairly basic chemistry. I was once told by a radiologist that "as iodine is a metal"... as I was doing a degree in chemistry at the time I pointed him to the periodic table!!

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I am thinking of getting some Hydroxycobalamin to self inject.. I thought I read that cyanocobalamin gets converted to hydroxycobalin when it is injected..is this right or..have I missed the boat.. I havent a clue !

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The two active forms of cobalamin that the body uses are methyl and (I think) adenosyl. I think basically the hydroxyl or cyano group is swapped out in the biochemical reactions to these active forms. When these groups are swapped out then that group would be left in your system as a biproduct. I would need to look more into it to see the exact biochemistry that goes on.

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Hmm yes, I've seen a gastro, had a colonoscopy and a chest x-ray, and had another referral to a respiratory consultant (the last two for the sighs!) Best GP has offered is B12 every 8 weeks, which I admit is better than some! Extra B12 would be so much cheaper, particularly as I'm happy to self-inject. Thank goodness for German pharmacies and Youtube instruction videos! :)

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If you are on 3 monthly injections then I presume that you are being treated with hydroxocobalamin - so no cyanide molecules in sight!

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Your case sounds so familiar... I've currently seen 2 neurologists, had 3 back MRIs, seen 1 haematologist and am awaiting my ENT appointment. My German B12 ampules cost around 1 quid per injection... Think the maths work themselves out! Good luck.

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Interesting that the haematologist is so confused, the one my request for extra injections for neurological symptoms (seems as if someone got the speciality wrong there) went to ordered I should stop all injections for 6 months and then have a full set of blood work done to prove I needed injections in the first place. I know the GP didn't pass on my comment of 'Bo---cks'.

One of my neighbours has B12 injections for 'neurological problems' but says she doesn't have PA. I will have to try to get the full story from her but that will take some effort as she is a bit of a twit, mind, she is on the Patients Panel at the same surgery - heaven help us if she has any say in matters. It will be interesting to find out her frequency and what exactly are her symptoms.

The GP is of course quite safe in insisting on 3 monthly injection as that is the dosage period specified in the license for hydroxocobalamin in the UK unless neurological symptoms are proven by a specialist. There may well be other guidelines elsewhere but that is the one they seem to latch onto. They all play safe these days and look for a test which gives them a green light to do anything. I am sure I could write a computer program which would replace the modern GP without too much effort - it might kill a few but the GP would be safe.

I don't subscribe to the cost implications to the NHS of appointments to specialists or clinics, or any savings from not having them though as the facility and staff would be there if you were on their list or not. Were it a business making a charge to a customer then they could apportion the fixed cost of the establishment to individual appointments for recovery purposes but as the establishment would, in the short term, be in existence and there is no end customer to be charged there is no additional cost nor saving because an appointment is made or not. If there were to be so many more or less appointments then that could be seen as a saving or a cost but not where you are allocated a slot in an already established schedule. All that could be said is someone else could have had the appointment instead. (And that is my rant over)

As is often said 'They are all mad bar thee and me, and I am not so sure about me.'

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