Over the years I’ve heard some quite ridiculous reasons why patients with Pernicious Anaemia have had their treatment stopped, and the most common reason occurs when the patient complains of a return of his or her symptoms and the doctor will test the patient’s blood to find out if the patient’s B12 levels have dropped. In 99% of cases the patient’s B12 level will be high which will lead to the physician becoming concerned that the patient might ‘overdose’ on the vitamin and that leads to him or her withdrawing treatment, and arranging for another blood test to be taken in three or six months time. It’s a common scenario that leaves the patient and the doctor bemused as to why the patient’s symptoms have returned if his or her B12 levels are fine which is why guidelines state that once injections have started no further testing is required. Why does the patient feel a return of his or her B12 deficiency symptoms when the serum B12 is showing adequate or high levels? Nobody really knows but it could be to do with analogues of B12, otherwise known as pseudo-B12.
I digress. Back to the often ridiculous reasons for treatment being stopped and, at this point, let’s remember that for patients with Pernicious Anaemia, the injections don’t just make them feel better, they keep him or her alive. Here are some of the reasons I have heard being given for the patient’s injections being stopped.
1. New Research shows that tablets that you can buy from Amazon are as effective as injections.
2. This Health Authority has issued new Guidelines that we all have to switch to tablets.
3. There’s no such thing as Pernicious Anaemia any more
4. We’ve re-tested your Intrinsic Factor Antibody and it’s come back negative so you don’t have Pernicious Anaemia any more. You’re cured!
I could go on but you get the gist of things.
But, last week, I came across one that really is quite astonishing in its brashness, unique in its link to recent political events and quite breathtaking in its callousness. This came to me via a call to the telephone helpline and it goes like this.
A lady had been living in Spain for six years. Five years ago she was diagnosed with having Pernicious Anaemia after feeling unwell for some time. On getting the diagnosis from a physician in Spain she was prescribed loading doses of B12 and told she would need two-monthly injections for life. She left Spain and settled back into a town in the midlands. She visited her new GP to request an injection.
“Oh No” she was told via a telephone call. “Now that we’ve left the European Union we do not recognise any diagnosis from other European countries. They got it all wrong”.
She asked me what she could do as, if they requested a blood test, it would either show her B12 levels to be normal or high. I really didn’t know what to advise her.
It goes to shows the ignorance of the condition when there are 27.1/2 thousand members on the Pas site all seeking help and guidance. I was put on folic acid by my heamatologist, two years later I were diagnosed with B12 deficiency. My Gp gave me the loading dose then 3monthly injections, I were still very unwell so I were given 2monthly. Being very frightened I started to self inject to give myself a bit of respite and relief. I complained of neurological symptoms together with other unpleasant one’s but this fell on deaf ears. I sent links from Pas ect to try and educate my gp but was then labeled as being annoyed. A year later I was refered to a neurologist who wouldn’t even listen to me let alone take a full history of symptoms, in fact I would go as far as to say he totally dismissed them. I came away deflated and very depressed. My Gp after 20months of my suffering is now sending me to a gastrologist but the wait to be seen is going to be lengthy. I have been on lansoprazole for many years and suffer with non-errosive gastritis yet is has taken 20 long misserable months before being refered. I have a number of autoimmune conditions which my Gp does not fully understand and she is now passing to another Dr in the surgery.
I would ask the doctor if such a statement is written into the Guidelines for the treatment of P.A. And I would want to see evidence . But that is truly unbelievable!
Pre covid my B12 levels were tested 12 monthly. Each time I stated the same comment, ‘My B12 levels will be high because of the injections, please check the MCV which is a correct indication. If MCV is high, it indicates a deficiency.’
That’s what I was told by my GP 20yrs when diagnosed.
Hi ! I just wonder what is mcv
My mother, now 94, and bedridden for three years as she hasn’t any strength was diagnosed with PA around six years ago by her GP. After two and a half years of B12 injections he pronounced her cured, from which time she went down hill.
Had PA systems from child it had taken to the age of 40 before being diagnosed with pa and given once a month injections then four years ago they did their yearly blood test mine came back at 980 so the G P stopped my injections and said you no longer needed injections your PA as gone and I said it can’t just go PA injections were for life I had to fight for three years to have them repeated and pay for private blood tests to prove I had PA mma came back very high so doctor said to me what does that prove ? She said we will see what hematology say doctor was told she should not have stopped my injections which made her angry and said to me you can have injections every three months but if blood work comes back normal again we will stop B12 injections.
Makes you want to cry doesn’t it 😢
I’ve had Pernicious Anaemia for over 25 years. The last few years have seen these symptoms become worse,tiredness, fatigue, stomach problems, eye deterioration, depression, nausea, weakness etc etc. Luckily I persuaded a GP to give the injection every 8 weeks a couple of years ago, but my symptoms get worse a few weeks before my next injection now! Feeling old before my time. Would love to get these injections every month to see if they make a difference. Any suggestions, warmly welcomed. No one in the Surgery think there’s nothing major wrong as my bt come back normal!