My B12 serum level was 248 which my GP says is at the low end of normal. She ordered one B12 injection a month for 3 months (3 injections total). I have pins and needles pain in my ribs and pelvis and also loose stool but am not fatigued or nausea. I was on Omeprazole for 23 days last month.
I asked my GP to test me for PA. She said that my routine blood work does not show anemia and asked me to proceed with the one shot a month for three months.
What would you do? I don’t have any other doctors to ask. I thought about increasing the frequency of the injections but have no idea where to buy them so I can inject myself.
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Pain12345
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There are many reasons Pain12345 for anyone to become B12 deficient P.A. being just one of them.
Your mention of being on a PPI may be an additional cause if you have to continue using it - poor diet is another. Are you a meat/fish/dairy eater? Do you eat plenty of vegetables?
Your doctor is treating your "low" B12 - see how you feel after the three months and in the meanwhile keep a record of any improvement (or otherwise) in your symptoms which you can present to your doctor if you are no better. It is not uncommon for some symptoms appear to get worse before they improve once the injections start.
I am not a medically trained person but have had P.A. for fifty years.
PA is a misnomer - in the sense that it is actually an autoimmune disorder of the gut - in which the body attacks and destroys the mechanism that allows B12 to be absorbed. It is one of many possible B12 problems that lead to a B12 deficiency. One potential symptom of B12 deficiency is a specific type of anaemia where blood cells are larger and rounder than they should be. The name PA (sometimes known as Addison's Anaemia) comes from the fact that B12 deficiency was first observed as a type of anaemia that eventually leads to madness and death. this was a couple of centuries before B12 was even identified, let alone identified as the cause of the underlying condition.
There are other absorption problems that will lead to a B12 deficiency, some are treatable but most aren't which means that patients will need injections for life.
There is a test for PA, IFAB, but it is not very sensitive which means that it gives false negatives 40-60% of the time. On the other hand it is quite specific, meaning that it rarely gives false positive. That means that a positive is good evidence for PA being the cause of a B12 deficiency, but a negative is a long way from proving that you don't have PA. There was a much better test in the past called the schilling test but it is no longer available.
The limitations of testing for IFAB mean that the BCSH standards refer to IFAB negative PA.
Whilst omeprazole can cause problems absorbing B12, the body uses so good at regulating serum levels using stores in the liver that it takes a long time for a B12 deficiency to develop - years and even decades - so 23 days of omeprazole last month is not going to lead to a deficiency. However, the prescription for omeprazole may indicate the existence of a conditions such as low stomach acidity that could be the result of PA or will affect B12 absorption anyway.
It does sound as if your GP is confused by the mention of anaemia in PA and may not realise that it is actually a disorder of the gut.
It also doesn't sound from the treatment as if you are based in the UK, and that the form of B12 being used where you are is probably cyanocobalamin.
You might find it useful to point your GP at the following resources
a) BCSH standards on diagnosis and treatment of cobalamin and folate disorders
Also, I read in this forum where people administer their own daily B12 injections when their GP only orders monthly shots. Where do they go to purchase those supplies? Is there a trusted, reputable company that sells them to customers without a prescription? I live in the United States.
B12 is prescription only in the US and the UK but it is an over the counter medication in other countries - such as Germany and Canada. People use on-line pharmacies in countries where it is over the counter. In both UK and US prescription is only necessary if being used for medical purposes - its also used as vitamin supplement in health clinics but that is a very expensive route to go down. There is an agreement between the US and Canada that can make it more difficult to source from Canada.
You might get lucky with the neurologist but many people's experience is that they can see several specialists in areas that relate to symptoms of B12 deficiency but still find themselves facing the same degree of unawareness of PA and B12 deficiency as a condition,
You can get supplies of Cynocobalamin B12 fromCanadian online pharmacies . I will look up the websites for you and let you know . Best to get the single -use ampoules rather than the multi-dose vials. .
You can administer B12 injections by both the Intra-Muscular or the Sub- cutaneous method . Inform yourself about these 2 methods before you order needles . Sub-cutaneous needles are shorter and finer than I. M. ( Sub Cut = 30G x 1/2 inch .. I.M.=. 25G x 1 inch . )
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some members in other countries.
Have any of you experienced pain in your left ribs (about the fifth rib just below the male nipple)? I had an x-ray and it was negative. I’m wondering if it could be B12 related.
I used to get excrutiating pain in mid/lower rib area that would make me drop to the floor.
Little interest from doctors...Eventually I worked out for myself that the intercostal muscles (between ribs) were having random spasms.
This symptom stopped when I finally got some B12 treatment.
I also used to get angina type symptoms, again little interest from GP...I had so many symptoms I think they thought I was making it up. This stopped when I got B12 treatment.
I have had several EKGs (including this morning)- normal rhythms each time. Like you, my GP is not showing much interest. Either she thinks I’m a hypochondriac or she thinks I am trying to do her job for her.
I had my first B12 injection today, but the next one is in a month. Not sure what good that will do without a loading period.
Thank you. Is it worthwhile (or advisable) to also take daily oral B12 pills if I cannot find a doctor to give me more frequent shots? I realize there is the likely absorption problem. But, is it better than nothing in between injections?
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