Hi everyone
After being unwell my B12 was tested as it came back as 51. I was offered 6 doses in 2 weeks and then told to return every three months for top ups. However - I’m 3 weeks after having my last dose and I’m starting to feel unwell again.
can you advise me where to buy my own supplies for self injecting?
thanks in advance
Hi 0050
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly. In addition remind your doctor that the the N.I.C.E guidelines say "Initially administer hydroxocobalamin 1 mg intramu scularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."
cks.nice.org.uk/topics/anae...
Do this as soon as you can - it is your entitlement - and before going down the S.I route,
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 51 years.
I wish you well.
If all fails with your GP , you will need to self inject , because if symptoms have returned , you must act asap , to avoid any irreversible symptoms ( it happened to me -that’s why I feel that I must warn you )
i will private message you with information .
Spot on the same time as me, when I started reversing out symptoms.
I takes me 30 minutes to drive to my doctor. It's so much easier to have my husband give me injections. I can get them even when I am out of town. I agree with your trying to get more from the doctor, but long term, there are great benefits to managing it yourself. My husband gives me my shots.
Hi,
The link below outlines the recommended treatment for B12 deficiency in UK.
If you have neurological symptoms have a look at pattern "For those with neurological impairment".
cks.nice.org.uk/topics/anae...
How to write letters to GP about B12 deficiency
b12info.com/writing-to-your...
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.
It's vital to get adequate treatment for B12 deficiency. Inadequate treatment increases the risk of developing permanent neurological damage. In severe cases the spinal cord can be affected.
Might be worth discussing this with GP, face to face and in a letter.
PAS article about SACD, sub acute combined degeneration of the spinal cord.
pernicious-anaemia-society....
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.
healthunlocked.com/pasoc/po...
Lots more info in pinned post "Various B12D/PA resources.
Pinned posts are on right hand side of screen if on computer.
I'm not a health professional.
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