Following a visit to the GP in 2018, with headaches, blood test revealed PA, so I have been having cobalbumin shots every 12 weeks since then. I do take meds for BP, hypo thyroid, blood thinner after 1 bout of AF (low potassium) and I have numb/tingly fingers on both hands. I have had this for about 2-21/2 years I think, and thought it might be the blood thinner, or BP meds. IT has got to the stage where my phone is frequently not responding to my touch. I have a face to face appointment on 6th sept. What can I say. do to get tot he bottom of this ? Previously when I have mentioned it to cardio or GP it's just been ignored.
Any advice please?
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demand the intrinsic factor antibody test and the parietal cell antibody test they are the gold standard as far as pernicious anemia goes. You can have a negative on the IFA test and get a positive on the PCA test and conclude and be diagnosed with PA. I would increase your B12 intake until you feel good. I would say 90 days as that’s the recovery time for damaged red blood cells. After that you can reduce the frequency until you find your sweet spot so to speak. Don’t ever let it lapse if you have PA symptoms will return quickly we must remain diligent and be aware that symptoms are mistaken for something else and doctors usually treat your symptoms not the cause.
The tests are only "gold standard" for positive results. I would not give them a "gold" because there is an extremely high false negative rate. A lot of people with PA will test negative, but that does not mean they do not have PA.
Try to find the local B12 deficiency guidelines that your ICB (Integrated Care Board) uses as your GP will probably look at these. Wales and Scotland have Health Boards.
Do you have a supportive friend or relative who can help with finding information?
If you can't find your local B12 deficiency guidelines online then best bet is probably to submit a FOI (Freedom of Information) request to your ICB in England (Health Board in Wales/Scotland) asking which B12 deficiency guidelines they use and for a link to or copy of them.
Go to ICB website. Put "FOI" or "Freedom of Information" in search box. This should take you to a page that explains the FOI process.
Sometimes GPs don't like it when patients are assertive. It might be helpful to take someone supportive with you to appointments that could be challenging. It's good if they've read about B12 deficiency before they go with you.
In March 2024, NICE published a new B12 deficiency guideline.
"Previously when I have mentioned it to cardio or GP it's just been ignored."
I do think that older forum members may be at a disadvantage when trying to get doctors to listen. I suspect too many things are put down to getting older when there may be a problem that can be treated.
To avoid being ignored
1) You could ask to record your appointment .....it's possible that doctor won't be comfortable with this.
You would have good grounds to ask if you have symptoms that affect your memory or concentration or hearing
If you think it would be helpful, try writing to doctor before next appointment and asking in short letter if you can record appointment and explaining your reasons why eg fatigue, memory problems, brain fog, hearing problems etc.
2) Put concerns into a short letter to doctor.
Letters are supposed to be put with your medical notes. Always keep a copy.
3) Take someone supportive with you.
It's my feeling that doctors will be kinder if there is a witness present.
I was diagnosed 2 years ago and I had suffered painful numb fingers on my tight hand for years -since injecting at least every other day since these symptoms completely gone. Your post made me realise that as “deadman’s fingers” as my family calls them had been part of me for so long. Glad they have gone!
So yes sounds like you need more B12 and also ensure sufficient cofactors to keep levels in upper half of the range. I am not a medic but that’s a strategy I was shown by a B12 specialist.
With tingly fingers, you should be getting injections at least every other day until your symptoms are gone. Then try spacing them out to find your maintenance dose. I get symptoms back after 3 weeks so I inject once per week. The tingles are a sign of nerve damage. There can also be damage to your spinal cord that you might not feel until it is too late. You might need to self-inject to get enough B12.
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My doctor says too much B12 is Dangerous and Toxic ! (Tell me “A doctor” who says it’s safe and I’ll give you B12)
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