Was diagnosed with PA 2 years ago and been on injections every 3 months since then. Was due for my next injection last Wednesday - about 15 minutes before I was due to leave the house I got a call from the nurse to advise that my appointment was cancelled as my levels were too high following a blood test I had the month before (testing for various things as I'm feeling completely exhausted all the time).
I tried explaining that injections shouldn't be stopped and that levels would be high due to treatment, but I was advised that the senior GP at the surgery wouldn't sanction it and that i was to go back in 6 months to be tested again. I was told that if I had an issue with this then I need to make an appointment to see this GP - which I've done and the earliest appointment is now another 2.5 weeks away.
Feeling so frustrated - I'm too tired to have a battle with them. Just needed to have a bit of a rant 😤
Written by
Simba01
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If you are in UK, I'd suggest contacting PAS (Pernicious Anaemia society) as soon as possible. They have experience of helping members with PA who have had injections stopped.
Person who runs this website can be contacted by e-mail. She is helpful and sympathetic.
Proof of PA diagnosis
Do you have proof that you were diagnosed with PA eg copy of letter from GP, positive result in Intrinsic Factor Antibody (IFA) test?
May be worth getting copies of blood test results and other medical records. Some people on forum who have had injections stopped have found it hard to prove they had a previous PA diagnosis.
Stopping injections in people who have a definite diagnosis of PA is potentially putting them at risk of neurological damage.
Some people on forum have showed their GPs information on SACDSC "sub acute combined degeneration of the spinal cord" as an example of what can happen if B12 deficiency is not treated. there is an article on SACDSC in PAS library section on website.
I gave my GPs a copy of "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper which mentions lifelong treatment for PA.
I am not a medic just a perosn who has struggled to get a diagnosis.
Half way down the page under "What is the treatment for B12 Deficiency" it plainly states:
"If you have pernicious anaemia the injections are needed for life. Apart from the discomfort of having an injection, you should have no side-effects from the treatment. The injections are simply replacing a vitamin that you need".
I was told that without the injections I had only two years to live = 45 years later I'm still "clivealive" at 75
Thanks all, really appreciate the replies. Will make sure I go armed with printed info for my appointment and will also follow up with the PA Society. Sadly, I don't know any 6'5 boxers, but I've got 17 days to find one!!
Hope you find someone to go with you. Doctors are sometimes kinder when another person is present. Do you have someone who can go with you, preferably someone who has also read up about b12 deficiency ?
As I suggested above, may be worth putting concerns in a polite letter as things said in consultation get forgotten and sadly GPs don't always read what they are given by patients.
If you forget to take guidelines with you at next appt, the GP will have a copy of BNF (British National Formulary) in room and may be willing to let you look at that. Info about B12 treatment is in Chapter 9 Section 1.2
"that levels would be high due to treatment, "
In BSH Cobalamin and Folate guidelines it makes it clear that testing after B12 treatment has started is irrelevant. Think fbirder 's summary of mainly UK B12 documents mentions something about this. Link to his summary in third pinned post.
I would suggest you write a letter to you gp stating you are very concerned a bout your physical and mental wellbeing because your B12 injections have been withdrawn in error and include copies of guidelines recommendations re: treatment of PA and neurological symptoms highlighting these. Do make sure gp gets this letter before your appointment and take extra copies with you when you go and do take a witness with you.
You have been given excellent advice already by several members of the forum. Do make sure you contact PAS in Wales.
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