help re b12 jabs and visit to haematology, b12 levels dropped from 1103 to 871 when on 4 weekly jabs and sublinguals

[Debs_47]

Hi I have had b12d for over 10 years and untreated until a couple of years ago. I have my jab every 4 weeks and have asked for them to be done more frequently as I still don't feel alright. I have had a gradual improvement but a few backsliding periods too. I am being referred to haematology and want to know what I should ask them to test, look into to make sure I get the most out of it. my gp checked my b12 before my last 2 jabs and they were 1103, 871 4 weeks apart and I take sublingual b12 as well. any help and advice would be appreciated. I am hoping/trying to get put on booster jabs

[fbirder]

The only tests I can think of are:

Methylmalonic acid (MMA), homocysteine, and active B12. The first two are a good indication as to how well your B13 is functioning. The last will tell you if you have sufficient amounts of the B12 that actually gets into the cells.

Are you keeping a journal of symptoms and supplements? That would be useful for persuading your GP to increase the frequency of jabs.

[Debs_47 in reply to fbirder]

GP has been really good and interested in the b12 information I did give her but admits shes not an expert and that's why she had my bloods done the last 2 months and is referring me on. ive not kept a journal recently but I know I have gone worse the last few months as ive been stressed at work. keep getting a cold as well which isn't helping. thanks for your reply it is appreciated

[Gambit62 Administrator]

Wondering where you are based and what type of B12 you are receiving - cyano or hydroxo - probably hydroxo if you are on 4 weekly.

Also, do your symptoms include neurological symptoms - which could be an argument for a sustained period of more frequent B12. It might also be an argument for trying a different format of B12- eg methyl.

Really hope that you see a haemotologist that really knows something about B12

Keeping a diary of symptoms as suggested by fbirder would be a very good move

[Debs_47 in reply to Gambit62]

hi, yes I think I will keep a diary from now so I can be as informed with the haematologist. yes I have lots of neuro symptoms brain fog, memory problems, concentration, muscle weakness, fatigue, migraines, muscle pains especially get pains in my feet and arms. im in st annes near blackpool, cant remember which one it is I get but going tomorrow so will write it down. just fed up of not feeling normal and ok and not struggle to do normal daily things. I used to go running 3 times a week and do bootcamp classes etc a few years ago then its like my body just crashed and burnt. thanks for your reply

[Gambit62 Administrator in reply to Debs_47]

Surprised that you are on 4 weekly in the UK - usual regime is hydroxo 12 weekly if no neuro symptoms or 8 weekly if there are neuro symptoms

You may also want to refer to the BCSH guidelines - page 8/9 I think for the regime if there are neuro symptoms - which includes a different regime for loading shots - 3x week until symptoms stop improving.

bcshguidelines.com/document...

I actually continued going backwards on the normal regime and ended up treating myself as GP didn't really seem to understand B12 at all.

Hope that appointment with haemo goes well.

[Debs_47 in reply to Gambit62]

she will support me to self treat even to the point of getting nurse to show me how but wont prescribe herself, she is my new dr as my other retired he allowed me 4 weekly as my migraines were so bad and came back along with other symptoms if left any longer, she is doing more by truly listening and trying to help with referral so I am quite relieved as I was worried they would extend the period between jabs. thanks for the link I will look into this.