Am I in trouble

[may61]

If on sept 9 my b12 555 on October 25 it 338 and 1 injection on that day no more for 3 months original b12 on July 7 132 Then 4 injections AM I IN TROUBLE Had stiff neck both sides for 2 weeks feels like someone kicked me in back of neck vertigo since October 25 Legs like jelly What to do?

[Foggyme Administrator]

Hi May61. Looking back at your previous posts, I see that you have B12 deficiency with neurological symptoms. The B12 treatment your GP has been giving you is wholly inadequate and not,in accordance with the curren guidelines.

Here's what you should be getting for B12 deficiency with neurological symptoms: 6 x 1mg Hydroxocobalamin on alternate days (the loading doses), the. 6 x 1mg Hydroxocobalamin every other day until no further improvement, then 1mg Hydroxocobalamin every eight weeks (though that is not enough for some people - but that's another story). Your GP is obviously not aware of this regime (not many are) so you will ha e to,point it out to him.

This information is contained in the British National Formulary (BNF) - it's the GP's prescribing bible - he'll have a copy on his desk. Get him to read it while you're there - it's the second item down so he'll have to read further than he usually does!

If your GP is still reluctant to treat you, as above, tell him you are worried about the potential for irreversible neurological damage and ask him to put his reasons for witholding (use that word) treatment in writing and to provide medical evidence for his decision. He won't be able to 'cause there isn't any!

Some tips to help: at 132 your B12 was very low. 555 and 388 after injections is still very low and certainly no reason for your GP to stop injections (having never given you sufficient in the first place). To put this in context, my B12 level is always over 2000 (simply an indicator that I have had injections) we have seen them here as high as 5999, levels need to be 1000 (some say 1500) to effect proper neurological repair, if you lived in Europe you could buy B12 injections over the counter and inject as often as you needed to get and keep well. Dogs with B12 deficiency receive injections once a week!

You could also highlight any relevant information in the PAS pinned posts and take this with you for him to read. Make a double appointment so that he has time to read the information while you are there (or he probably won't 'get around to it').

Take some with you if you can...if that person could read your information beforehand so that they can jump in, if necessary, that would be extremely helpful. Doctors can be very hostile and are often more reasonable and attentive if there is a witness in the room. Sad but true.

With your family history of PA your GP should be taking this much more seriously. Even if you test negative for IF, you can still have PA. Your GP doesn't seem to know this! There is a diagnostic flow chart in the second set of pinned posts - worth showing that to him when you go (he'll also be able to see what he's missed out - like testing MMA and Homocystine - but too late now 'cause the B12 injections you have had will skew the results.

And a last thought - you say that another memer of your family has been diagnosed with PA, won't have treatment, and has been diagnosed with a mental health condition. Don't know if you are aware of this but one of the symptoms of B12 deficiency is neuro-psychiatric problems. So,it could be that if he could be persuaded to have treatment with B12 injections, his mental health may improve significantly (other members on this forum have suffered in similar ways and have improved following B12 therapy).

Anyway May61, I'm afraid you're going to have get tough with that GP of your's. This is not you...he is being negligent...and he needs to get his act together.

I know it's really difficult having to stand up to doctors and all here will know exactly how this feels. Just please take heart from the fact that there are people here to support you. So please post again if you need any further help, especially if your GP still refuses to treat you.

Very good luck and take care x

[may61 in reply to Foggyme]

You hav put my mind at rest a little that I am going down the right path I am in the middle of drafting a letter to drop at my docs on Thursday with a copy t o the practise manager Have already brought the loading doses up with both doctors When I go on Friday I am taking someone with me and I will do as you say and if he refuses will ask for it in writing visit it is negligence

[Foggyme Administrator in reply to may61]

👍👍 Good luck May61. Well done. Be firm. Don't feel belittled by him. Let us know how it goes 😀.

[Sleepybunny]

Some links that may be helpful

bmj.com/content/349/bmj.g5226

b12deficiency.info/b12-writ...

pernicious-anaemia-society....

Has your GP got a copy of "BCSH Cobalamin and Folate Guidelines"? I found page 8 and page 29 particularly useful. I take a copy with me to appts.