Hi I just wanted to know if anyone could advise or might have a similar problem I have all the systems of B12 deficiency; fatigue, weight loss, balance problems , brain fog, memory, numb toes, tingling sensation in my legs, swollen ankles especially my left one and vision problems with my right eye drooping.
I used to have B12 injections over ten years ago with Dr Chandy but unfortunately I couldn’t keep injecting myself. The B12 blood test on the NHS has come back high at 1247ng/l but I don’t feel it’s being transported where it needs to go as I’m not taking any supplements. So I’ve had to pay privately for the MMA and Homocysteine tests MMA is 16.7 (>32) and homocysteine is 11.24 which I’ve now been told due to them being in the range they won’t give me the injections.
Has anyone else had this problem the feeling that I know how to be fixed but with the results showing so high no one willing to help I feel there is some form of blockage.
Should I try and do the B12 injections again myself or does anyone know who to suggest?
Thank you
Best wishes
Bess48
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Bess48
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I am afraid with PA/B12D injections are for life. Unless by some miracle you have had a total body transplant. Apologies that is my weird sense of humour, I’d love to trade mine in. Have you read Dr Chandy’s book ? You really need to learn about this disease/illness because it is totally bizarre. Become a member of the Pernicious Anaemia Society
You do not need to have an exact diagnosis, you can be involved in research and they are the only organisation that can produce statistics. Please know the misdiagnoses too :-
So, may I ask why you couldn’t keep injecting yourself ?
Now, doctors are totally unaware about retesting B12 levels once treatment has started. From the British Society of Haematology. A couple or researchers state that to get an accurate reading, you have to wait a year after any supplements.
Yes, there are plenty of blockages in the systems. NHS computers affected on Friday due to Crowdstrike, so that included the GP’s EMIS system and they were turning people away. We’ve had nurses, doctors, paramedics strike, not to mention the pandemic of COVID-19. Today, the average waiting time now for a 999 Emergency for an ambulance is 5 and half hours compared to 7 hours a year ago. A fortnight ago, the Health Secretary began talks with the junior doctors over their pay.
I can see in your area that the cut-off for PA/B12D is 210 ng/L until your B12 is below that you are not classified as “SICK.” Hashimoto’s disease and PA/B12D go hand in hand. The U.K. are pretty rubbish with thyroid disease too.
So, how about you try injecting yourself ? If symptoms improve then you know the answer. If after 3 weeks no improvement then go back to your GP. However, if symptoms drastically deteriorate then use common sense.
It might be worth applying for your Medical Records too, by way of a Subject Access Request :-
You may be surprised by some of the rubbish written in them. Clinicians are far too rushed to write the correct facts. For example :-
My friend “sustained a shoulder injury from falling off her bike.”
She doesn’t own a bike and they then X-rayed the incorrect shoulder.
I can’t quite imagine going to my bank, then 9 months later receiving a phone call telling me, Oh sorry, we accidentally transferred US$2 billion of another client’s funds into 1 of your accounts.
But then we have become more addicted to technology and X marks the spot. There’s a lot of misinformation, disinformation, mal-information and missing data floating around out there.
I know some will disagree with me, but for a diagnosis and treatment I saw dr Klein privately at the Cambridge blood clinic. He does also do online consultations if u can’t travel there. My drs were messing me about far too much.
High levels of serum B12 without taking B12 supplements/B12 injections can sometimes be the sign of a serious health issue.
I would expect your GP/other doctors to check liver and kidney function and order other blood tests such as Full Blood Count (FBC) in someone with high B12 who isn't supplementing. Push your GP into investigating.
You might want to look into Functional B12 deficiency where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
MMA, Homocysteine and Active B12 (holotranscobalamin) tests can help to diagnose this. I can see you have had MMA and homocysteine, have you had an Active B12 (holotranscobalamin) test?
I don't think that the drooping eyelid is a typical problem. Maybe rule out Myasthenia Gravis? But many of your symptoms sounds like PA so B12 sounds like a great idea. mayoclinic.org/diseases-con...
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How does it feel to have too much B12?
seeing neurologist, advice on b12 injections welcomed…
