Help

[Lilybear]

Can anyone help me with this. I asked for more frequent injections ( currently 3 months) as I'm still extremely tired

[Penni]

I get my b12 ampules on prescription so I can self inject. I have been doing this every month and still don't feel much better so had my blood tested today and now just have too wait for my results, hopefully that will make a difference

[Hidihi in reply to Penni]

how long have u been having monthly injs Penni? do u know how low your b12 was before treatment commenced?

[Penni in reply to Hidihi]

I have no Idea what my levels were but they were really low as I was admitted too hospital for 5 weeks and have been left with nerve damage in both hands,legs and feet.The doc did give me 48 hours had I not been admitted as I was so ill. I've been self injecting since I came out of hospital last September

[Hidihi]

my heavens penni, that sounds pretty awful. how did u get so low in b12? have the medics discovered if you have PA or low b12 i.e. your diet is low in b12 (vegan/veggie) or you are not absorbing b12 or whether you have coeliac or other gut or mal-absorption syndrome? apologies for all the questions, but it sounds as though a Hematologist should be keeping a CLOSE eye on you. most of your blood reports are either abnormally low or on the low side of the normal scale. it's advisable that they be on the higher side of normal. did you have the normal loading doses of six IM injections of b12 on alternate days before being followed up with the monthly injections? and finally are u on hydroxycobalamin or cyanocobalamin?

[Sleepybunny]

Hi Lilybear,

I can see that your haematocrit and haemaglobin appear to be low(below range). Your MCV appears to be low (below range) and your MCH appears borderline.

Has your folate, ferritin (iron) and B12 been checked recently? You need good levels of all of these to get good results from your B12 treatment.

Low MCV and low MCH can indicate a microcytic anaemia. Iron deficiency anaemia can cause low MCV. PA or B12 deficiency can cause a macrocytic anaemia. Microcytic anaemia means your red blood cells will be smaller, macrocytic anaemia means your red blood cells will be larger. If you have both macrocytic and microcytic anaemia then both conditions can mask each other.

nhs.uk/conditions/Anaemia-i...

Has your GP talked to you about your diet and other supplements besides B12? Have you asked your GP if you need to supplement iron or folate?

patient.info/doctor/Macrocy...

patient.info/health/iron-de...

"I asked for more frequent injections ( currently 3 months) as I'm still extremely tired"

Do you have any neuro symptoms? If you have neuro symptoms then my understanding is that you should receive an injection every two days until you stop improving (this could mean loading injections for several weeks or even months) then its an injection every two months.

Your GP can check this info in his/her copy of the BNF (British national Formulary).Chapter 9 Section 1.2.

Try googling "BCSH Cobalamin and Folate guidelines" I think this is what the NHS should be following. Has your GP got a copy of page 29 which is a diagnosis flowchart?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

The PAS are very helpful and sympathetic. You can leave a message and they will get back to you. You don't need to be a member to phone them.

Head office: 01656 769 717

[Lilnicki]

Agree..... The MCV looks lowish, which is hinting that your folate may be low. Do you have a recent level ?

[Laura5 in reply to Lilnicki]

I think you mean ferritin rather than folate