Hosp letter

[Leanneta]

Just received my letter from the write up of my 2nd visit to haematology which was a couple of weeks ago. Haematologist has wrote into doctors to say that my first appt showed a b12 of 236. 2nd appt they understand that I felt a little better as was in middle of loading dose. Consultant said in bloodwork everything seemed fine and was good felt a bit better. They also said due to pins and needles dizziness they would not normally see this with someone with a b12 of 236. I keep saying my active b12 was low end of normal. They wrote that normally see this with patients with pancytopenic but no signs. In end they said could be wise to continue maintenance injections however up to gp. im praying they will keep them up. They also mentioned neuro again but said only if gp wants to send me. The last experience I had with gp was when they said that did I feel neuro referal necessary etc and was i getting shallow breathing signs of anxiety. I kept saying I know I'm not depressed

[Gambit62 Administrator]

Hope that the GP does decide to continue the injections. Guess the consultant is sort of showing a little awareness of guidelines to treat on basis of symptoms rather than test results but would be so much nicer if they could actually spell that out in reporting to GPs. It might be worth having the summary from the BCSH recommendations to share with your GP particularly this one

"In the presence of discordance between the test result and strong clinical

features of deficiency, treatment should not be delayed to avoid neurological

impairment"

bcshguidelines.com/document...

May get more and more difficult on the depression front. Unfortunately one of the questionnaire's on depression includes a number of questions that a B12 deficient person would score high on without actually being depressed - someone posted the test on one of the depression forums on Friday which had me commenting on this and how unhelpful I actually found the questionnaire - even wrote to the mental health charity that had been used as a link to point out that I had concerns about the test. Doubt it will achieve anything as I'm not sure what the ultimate source of the test is - looked like it came from NHS.

[Leanneta in reply to Gambit62]

Yeah i wish they had of spelt it out Gambit, think that's what takes these days. I'm keeping everything crossed continues with injecrions. Still got neuro symotoms now so feel should still be getting them every other day just don't want to rock the boat. In end think will have to self manage after being shown to inject.

[Poppet11 in reply to Gambit62]

Aren't doctors getting paid a bit more to diagnose depression now? Oh, sorry, I can only type swear words so I'll move on....

[Gambit62 Administrator in reply to Poppet11]

was that diagnose or misdiagnose depression

[Leanneta in reply to Gambit62]

Ha yeah they misdiagnose to get brownie points I believe.

[Hidden]

Ah, not obviously a firm recommendation from haematologist then, sadly enough for you, all pushed back to GP. Oh not easy for you. I just do not know what to say now, see how you go and how your GP treats you, knowing you can self treat if you feel you need to?

[Leanneta]

Yeah Marre, that's what seems to be happening now. Pushed back and forwards. I think the fact my serum

Was 236 they feel in range and won't

Commit to neurological symptoms

Coming on at this level even tho as I have said before my active b12 low. A lot of doctors and haematologists still don't seem up to date with active tests

[Poppet11 in reply to Leanneta]

Did you give the doctor or haematologist any of the guidelines, UKNEQAS stuff or the BMJ research?

[Leanneta in reply to Poppet11]

Yeah I gave the doctors the guidelines. I think doctors do get paid to diagnose depression

[Poppet11]

I'd take the BMJ article in and ask for it to be put with your records. I'd ask the doctor to consider other avenues before he considers depression. I once ask a doctor if he got paid for referring people for counselling. I think he did because he shut up quick sharp and never mentioned it again.

I was, actually, joking.

[Leanneta]

Thanks for the advice poppet, I will take it in. If anxiety gets mentioned again I will say that. It was the doctor i got put with as mine was off. Battle axe was not the name lol

[Poppet11]

Oh, there's some right stuff on my records - they fail to record symptoms but manage to put every smart arse comment I've ever made!

[Polaris]

Another useful link below - NICE recommends that injections for B12 deficiency with neurological symptoms be given every two months. This is important for, as you probably know, they can be irreversible if not treated urgently and adequately.

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

If you want to start supplementing yourself, I've found 500mcg B12 methylcobalamin sub-lingual spray from Pure is very effective. (Available from Amazon UK).