Help please - newly diagnosed.

[Princesspea]

Hi all

I was diagnosed with low B12 last Aug. A reading of 109 followed by 113. My GP (who I am realising is worse than useless due to issues I am having regarding thyroid diagnosis problems, but thats a different board!!) advised I didnt have PA as my Intrinsic factor was negative and that I did not require the initial loading doses just to start on the 3 monthly injections. (Both the receptionist and the nurse who gave me my first injection said they had never heard of this before). So I have now had 3 x 3 monthly injections but since I know I was at a very low level and the injections alone will probably not be enough I have been taking 5000mcg sublingually every day since the start. Can anyone tell me if I have been diagnosed and treated correctly by my doctor please? I have also since asked to have my level tested to see if it has increased and I was told they cant check it once you are having the injections as your level starts off high after an injection and falls sharply until you are due your next one so the reading would not be accurate. Is this correct?

Many thanks

Gail

[Hidden]

Hi,

It is up to your GP to decide what treatment he deems neccessary in each personal case..but this is the official (UK) "normal" rout of treating a B12 def (note not specifically PA but a B12 def):

See:

cks.nice.org.uk/anaemia-b12...

Treatment for B12 deficiency

How should I treat a person with vitamin B12 deficiency anaemia?

For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

For people with no neurological involvement:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days for 2 weeks.

Maintenance dose (where the vitamin B12 deficiency is not thought to be diet related): administer hydroxocobalamin 1 mg intramuscularly every 3 months for life (standard dose). Note that the manufacturers' licence is for every 2–3 months.

You will notice that monitoring is not deemed neccessary after initial response to B12 treatment has been monitored, see:

cks.nice.org.uk/anaemia-b12...

But once you are on B12 treatment and are on thyroid meds some monitoring is required as thyroid meds often needs adjusting once B12 treatment has started...

So all in all your treatment seems very relaxed to put it nicely and I'd try to see an other GP or something privately if you can..

(yes once on B12 jabs you are not B12 def anymore, and yes serum B12 levels are usually high straight after a B12 jab and drop over time. Actual levels vary enormously..different people hold on to very different levels of B12 after treatment has startede, some achieve levels over 1000, some never ever get anywhere near that..I dont anyway!).

KInd regards,

Marre.

[bebe1964]

It's a little different in the US. After diagnosis it's 1 mg IM once a month for life. I'm a little different as I can't seem to store it so it's 1 mg every two weeks. I also have neuro damage as a result of delayed diagnosis.