Guidelines for treatment

[ABC852031]

Is the part of the guidelines that says people with neurological symptoms should receive injections every other day until there is no further improvement, a bit confusing? It made me think that if the treatment was working I'd be experiencing improvements, even though I know nerves take a long time to heal, and I have in effect only had two loading doses with a gap of two weeks between them. There is no suggestion that it may be some time before any improvement occurs at all. Are doctors likely to withdraw treatment too soon because of the wording of the guidelines? I am currently fighting tooth and nail to get continuing treatment. I'm afraid if I admit that my symptoms are marginally worse I won't get any more treatment.

[clivealive Forum Support]

Hi again ABC852031 the problem with the phrase "...until no further improvement" is that only you (the patient) can know what is happening - no-one else and it would appear that your doctor has not followed the "every other day..." criteria for the injections anyway.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Were you able to get your Folate level checked?

Have you thought to join the Pernicious Anaemia Society click on the link below and scroll down

. It costs but £20 for a year's membership and they may "intervene" with your doctor on your behalf, plus there are lots of informative articles to read.

healthunlocked.com/api/redi...

My heart goes out to you in your struggle to get the right treatment but as I say, I'm not a medically trained person so can only "speak" from 46 years of experience.

[ABC852031 in reply to clivealive]

I joined PAS and spoke to their helpline, which was very reassuring because it made me feel that I'm going in the right direction. My GP gave me the first loading dose but I have been refused further treatment unless you count a booster in three months. I got a further 5 injections by seeing a private GP (total cost £253). I'm having no luck in getting an appointment with my GP, so it's back to another private GP on Monday. I am experiencing some benefits already; I can now swim like the Duracell bunny, doing the ironing doesn't feel like an endurance event and I've stopped thinking everyone hates me (I may be wrong about that but ignorance is bliss). Self injecting is starting to look like the way forward unless I can make my GP see reason otherwise my drug habit will bankrupt us!

[Gambit62 Administrator]

Unfortunately guidelines are never perfect. The current BCSH guidelines are a lot better than the previous guidelines but I would agree that there is still a lot in there that is confusing.

B12 deficiency affects nerve function in at least 2 ways - one is through damage to nerve lining which takes a long time to heal, and in some cases may not heal effectively. The second is the role it plays in the process that resets neural transmitters which should recover a lot quicker and would probably fit with the 'until symptoms stop improving' much better as this is the one that needs much more B12 to get back up to speed.

There are probably other ways B12 is involved in nerve function that I am not aware of (yet).

[ABC852031 in reply to Gambit62]

Thank-you for the info Gambit62. All five doctors I have spoken to have assured me that once you've had a loading dose your levels will return to normal and you will experience no further neurological decline. Is this true? If it isn't how do I counter this argument?

[Gambit62 Administrator in reply to ABC852031]

the amounts in your blood aren't what matters - its the amounts in your cells and whether your cells have enough to run all the processes they need to run properly that matters.

For some people that can mean that they need to keep levels well above the normal range because the shots may trigger a reaction that makes the process for transferring B12 from your blood to your cells less efficient meaning that your blood levels may be good but most of the B12 is trapped in your blood.

There are numerous articles about functional B12 deficiency - high serum levels with all the symptoms of B12 out there - and it is common enough to be a recognised symptom of some conditions that result in serum B12 levels rising above normal levels (eg liver and kidney problems) ... so it shouldn't really come as a surprise that B12 injections do the same ... but it does seem to come as a shot. The way to get round the problem if it is caused by a B12 shots is to keep B12 levels high - but how high depends on the individual.

[ABC852031 in reply to Gambit62]

Thank-you for your reply. Please excuse me banging on but if I can't get alternate day injections, is it true that my symptoms won't get any worse? I'm asking because I'm having so much difficulty getting treatment that I need a worst case scenario that might hold a crumb of comfort, just to stay sane! I have learnt to trust nothing a doctor tells me about B12 deficiency.

[Gambit62 Administrator in reply to ABC852031]

Generally speaking, yes you shouldn't get worse.

I can't give you any absolute guarantee as it depends on whether your levels are maintained where you need them to be - which may well now be above the normal range.

[BethattheBeach]

I'm sorry to hear of your struggles! Sadly, you are not alone. In fact, from my reading this site I could venture to say it is all too common not to receive your correct loading doses. I am in Australia and had to fight for 3, a fortnioght apart and then one every three months. In the end my husband could see that I ws losing 2 months out of every three and after nine months I began to self inject. I'm 64 now and this was nearly 4 years ago. I've had all sorts of tests with no real result so I continue to inject. I make sure I take extra supplements but B12 is water soluable and I've had two doctors tell me it is not harmful. I'm not medically qualified but I have had to research all this myself. You have found an excellent resource here so good luck.

[ABC852031 in reply to BethattheBeach]

Thank-you.