The phone call I received yesterday started off promisingly. “I’m just calling to say thank you for your advice about the pins and needles in my hands and feet. I did what you suggested and told my doctor to look in the BNF which he did and I’m now having an injection every other day. And guess what – the pins and needles have gone”.
Now, if the conversation had ended there I wouldn’t be as angry as I am. The caller went on:
“Funny how much of this is around” she said. “I was at the school gates yesterday and a lady who has a little boy in the same class as me commented on how well I looked. I told her it was probably the B12 injections and that I have Pernicious Anaemia”.
“Oh my grandmother has that – they found out eighteen months ago when she was in hospital – they gave her an injection”.
“How often does she have them I asked”.
“Oh she only had the one. She was discharged the next day. Thing is she is completely bed bound now. When my husband told the doctor about the Pernicious Anaemia and the injection he said that he would run a blood test to see if she needs another injection. She’s 82 years old”.
Now what would you do. I told the caller to tell her school gate friend to insist on more injections. She felt as helpless as me.
The problem is that some GPs do not want to give B12 injections, end of. I was diagnosed with a deficiency in October 2010, had to wait three months for my loading doses and then had an injection every three months until last summer when my GP refused to carry on giving me them. My levels have fallen dramatically and my symptoms have come back but this is a “coincedence”, according to him. I insisted I needed injections more frequently than three monthly but even that was better than none. I now spend a small fortune on high-dosage sublingual B12 which doesn’t seem to work as well as injections, but I’ve got to do something. I try to see a light at the end of the tunnel but I’m struggling now. I hope your caller passes on your information to her friend and hopefully the GPs wherever she lives are more informed than mine.
It took my doctors over half a year to diagnose me. I was 17 when the decied to test me for B12. I know have B12 injections every 10 weeks as I get so tired towards the end. When they were trying to find out what was wrong with me I had a blood test every week from the Feb to the Oct. People are still shocked that I have PA. It took me over a year to get used to having my injections and during that year I was still going on at my doctor to bring them closer as i was feeling terrible. I would suggest to keep going onto them and dont give in. Your health is more important. After asking and asking i finally had my injections brought closer together and still feeling some effects when it comes close to the 10th week. Make sure you keep going on. They will soon listen. All the best
My experience is similar to the previous responses. There seems to be an issue with the frequency of B12 injections, where medics are reluctant to give injections more often than every 3 months, understandably following the BNF guidelines. But also I would suggest there is a problem with the low end of the ‘normal range’ of blood levels of B12 being set too low. I suspect that the low figure of normal has been skewed due to too many B12 deficient samples being included – people are generally not aware that their symptoms are due to B12 deficiency. It has historically been thought that someone can only be B12 deficient if they are shown to have megaloblastic anaemia. Consequently, if you don’t have megaloblastic anaemia, it used to be thought that you can’t be B12 deficient. This means then that your blood sample would be included in the pool of ‘normal’ patients, even though it is actually B12 deficient!
After battling for years with various symptoms from the PA list, insidiously creeping up, I persuaded my GP to treat me for B12 deficiency even though my blood levels were ‘in the normal range.’ (270). I am like a new person with many symptoms having disappeared, only reappearing when needing another injection – which I am having every 6 weeks.(This was achieved only after an incredible struggle ). Recognising similar symptoms in my 82 year old mother but closer to not being in this life, (she was told her level of 160 was also in the normal range), she is now given B12 injections every 6 weeks. She too is like a new person and been given a new lease of life! Monthly injections would be preferable but the GP will not agree to this and yet the brain function is noticeably and significantly affected when she needs B12. We both avoid any ‘low’ periods between injections with B12 supplements sprayed under the tongue bought commercially. I am now battling with medics regarding my youngest son (age 23) whose main symptoms are stomach problems and tiredness – ‘diagnosed’ as IBS. (Medics say he is too young to suffer B12 deficiency). This is exactly how mine and my mother’s symptoms started, but rather than have diagnostic invasive procedures such as endoscopies etc, would prefer to see if his symptoms improve with B12 injections. (His B12 level was 350 so medics are reluctant to prescribe). His symptoms disappear when taking the commercially available spray (B12 levels at 850) although I personally find this not quite as good as the injections.
Having previously worked in pathology (I have a degree in biochemistry) I feel I have a fair understanding of the science involved with biochemical pathways etc and would urge more research into the ‘normal range’ for B12. (In some countries the lower end of normal is around 500). I meet so many people who in discussion seem to have similar problems. Even recently a dementia consultant was saying he has 4 or 5 patients each week asking about B12 and the impact on dementia – trying to persuade me to campaign about the issue! Indeed I would love to assist in any campaigns to raise awareness of this!
Hi Gail and thanks for the comments.
You may want to take a look at my book – Pernicious Anaemia – the forgotten disease. I go into some detail there about how some clinicians believe the current threshold for determining deficiency is too low. Unfortunately nobody has been able to find any proof that some countries use 500 as a lower threshold level. Any information you have on that would be gratefully received.
Best wishes
M