Unfortunately the letter below is typical of those sent out to B12 deficient patients, full of incorrect information.
This shockingly ignorant doctor, who has spent a fair old time at medical school still hasn’t grasped the basics. He states that ‘The blood tests that we have taken to work out why you had a low B12 have shown that the B12 has come back up to normal as has the folic acid. Therefore you can stop both of these.’
The doctor came to this bizarre conclusion even though the the patient was given a B12 injection 2 days before the blood was taken for the tests. This means that OBVIOUSLY it will show a much higher level of B12 than the patient had upon diagnosis. The doctor sadly doesn’t consider that this is a foolish statement and forgets that his patient will require injections for life.
It is all very simple in his world.
He goes on to say that ‘ …..there is a possibility that the low B12 was possibly caused by coeliac disease…..’
And so in his mind, the patients B12 deficiency is now miraculously cured. This would of course be akin to pumping up a punctured tyre and declaring it fixed.
B12 serum levels mean just about nothing once a patient is undergoing treatment with B12 injections. It is pointless to continually waste NHS funds to keep re checking B12 levels of a deficient patient just so that it can be used as an excuse to stop injections that the patient desperately needs. It would however be appropriate to check once in a new patient to see if they are responding to B12 injections but this is all that’s required.
This doctor correctly identifies the fact that the body may not be able to absorb ‘certain nutrients’ if they have coeliac disease but totally misses the point that the patient has autoimmune pernicious anaemia and it won’t go away just because the doctor has found another autoimmune condition.
Autoimmune conditions like to keep each other company in certain patients.
The doctor kindly states that if the patient has any questions to contact him –
Pertinent questions for him might be;
• When are you going to reinstate the patient’s urgent injections?
• Will you treat the patient as per NICE and BNF Guidelines?
• Will you check the patient for other nutrient deficiencies and treat them properly?
And finally – During your medical training, how much time was spent on the complexities of B12 deficiency and pernicious anaemia?
Best wishes, Tracey
If you think you may be deficient please visit the What to do next page.
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My daughter was finally diagnosed as being B12 deficient 2 months ago, this was after years of going back and forward to the doctor because she was having serious mood swings, feeling extremely tired, excruciating pain in her legs amongst other symptoms. The doctor, referred her to a psychiatrist for the mood swings, she was also self harming. He put her on the contraceptive pill for the tiredness as he said that it could possibly be her heavy periods causing this. The leg pains he put down to growing pains. She is now 17 and all this started when she was 14. A simple blood test could have prevented all this suffering, I just felt so helpless. There is just no understanding of this condition, which is wrong especially when it can cause so many serious problems. My daughter was made to feel like a hypochondriac.
Jodi,One of my very best friends had a very early devrleiy like you delivered a boy at just shy of 2 lbs.(Was in the NICU for over 100 days too) Today, he is turning 10 yrs this Dec. He is VERY skinny and “petite” but he too fell off “his” own chart. So at age 4 yrs started the GH shots daily. It was very hard for Mom to give the shots, but knew if she didn’t he would not be healthy. Today, he is still on the shots. They did a trial run of 90 days w/o the shots, and he fell off the “growth wagon”. So he will be on these shots daily thru puberity. He doesn’t even care or really notice the shots being given. I think its more of us adults dreading the thought of giving the actual shot vs it hurting. So, if you have to end up giving them to her, just know your motherly instinct will kick and and you will just get used to it (: