Do you only need B12 injections if you have pernicious anaemia? How long does it take for B12 to be lost after an injection?

[Moggy1234]

About 28 years ago, after around a year or more on proton pump inhibitors, I saw a gastroenterologist who diagnosed a small hiatus hernia and low B12. He said I should have B12 injections for 2 years to see if the problem rectified itself. With regular blood tests after the 2 years my B12 level was often low and I continued to get more injections. Fast forward till about 10 years ago and I came across Martyn Hooper and the PAS web site and found I had many of the symptoms of PA some minor ones I had never thought of mentioning to my GP. About 9 years ago a blood test, arranged by an allergy consultant at a private hospital, showed I had gastric parietal cell antibodies which he assumed was the reason for my B12 injections. (I have often had to resort to PPIs over the last 29 years). The same test through the NHS did not show I was positive to gastric parietal cell antibodies.

I mentioned to my GP that I required more regular B12 injections and he arranged for me to self-inject monthly. However, I find my symptoms are returning more frequently. My blood tests usually show my B12 levels over 2000 but, a blood test last year, a month after an injection, showed B12 at 1843.

I recently saw a gastroenterologist who said I would only need B12 injections if I had pernicious anaemia - there was no other reason for a patient to have B12 injections and he wanted to know who told me I had PA. His letter is now on my file and I am concerned I will no longer be able to get B12 injections through the NHS. The gastro consultant said that he sees many people with gastric parietal cell antibodies but only a few of them need B12 injections. He also said that they all went grey early and I was not totally grey-haired (a ‘young’ 70 year old). He said if a person has PA their proton pumps no longer work and they can’t have an acid problem and that either PPIs or B12 injections were a placebo.

Can anyone give me advice on whether the gastro consultant is correct that you can’t have an acid problem if you have PA? Is PA the only reason a patient requires B12 injections? Whether, in my case, my high levels of B12 relate to a B12 absorption problem - probably due to long term use of PPIs? Where I can get B12 ampules from if I can no longer get them through the NHS?

[fbirder]

PA is caused by the immune system attacking Gastric Parietal Cells. These cells make Intrinsic Factor (needed for absorption of B12) and hydrochloric acid. So, if you have PA then you will have low stomach acid.

Perversely, many of the symptoms of low stomach acid, mirror those of high stomach acid. The low acid levels means that the sphincter at the bottom of the oesophagus (gullet) doesn't work as well, so what acid there is in the stomach can reflux into the oesophagus, causing heartburn. This will happen more easily with a hiatus hernia.

The gastroenterologist is correct when he says he see many people with GPC antibodies. It's why they no longer recommend it as a test for PA.

He is talking out of his lower sphincter when he says that all people with PA have grey hair.

Has the gastrologist done a gastroscopy? If so, he should have found signs of gastritis and, possibly, metaplasia (intestinal cells growing in the stomach) where the parietal cells should be.

[Moggy1234 in reply to fbirder]

Thank you fbirder for the very helpful info.

Since my 1st gastroscopy about 28 years ago, that diagnosed a Hiatus Hernia, I have had a further 2, neither showed anything abnormal. No HH was seen at the last procedure 6 yrs ago. I stopped PPIs 2 wks prior to that procedure but was told mastic gum was ok. Patients are now told not to take herbal meds as well as PPIs prior to a procedure.

I have been having burning pains and the occasional acid reflux on/off for 30 years, when mastic doesn't help, I take a PPI. At the last, recent flare-up, it took 3 months for the PPI to get the problem under control - I was also taking Peptac. I was on a PPI for 4 months for the previous flare-up.

The consultant I saw recently (lack of grey hair) said GPs give B12 injs when levels are too high he said injs should be given when levels are below 100 not 200. I said in Japan they inject below 500 (I think Europe too) - he waved his hand in the air to dismiss my reply. He said I had had several procedures (3x gastroscopy and 2x colonoscopy) and nothing had been found so it was highly unlikely there was a problem now. Although he recommended a gastroscopy it seemed only to eliminate PA and stop B12 injs as that was the only reason for such injs. I am about to see another consultant and wanted to be sure of my facts before that appointment.

As my B12 levels didn't return to normal after the 2 year period in the 90s, I assume I may have an absorption problem due to long-term use of PPIs rather than PA.

I also have CFS and attended a seminar for CFS/ME a few years back. The nurses holding the seminar said although there was no cure for CFS B12 injections would help. I was the only one attending who was getting injs. Other attendees had low B12 and a variety of illnesses but their GPs wouldn't prescribe B12 injs. One young lady had been bed-bound with fibromyalgia which the nurses said could also be helped with B12 injs. It seems awful that in the 21st century patients aren't being given B12 injections that would help them - particularly when the solution costs so little.

Sorry rant over!

[mcg-woo]

I have the same question! Can a person with P.A. have too much stomach acid? I began having severe acid reflux issues in my late 20’s. I had my first endoscopy at 31 for severe acid reflux symptoms and colonoscopy because gastro dr thought I may have Crohn’s. Diagnosed with food intolerances, no Crohns. I began taking PPIs because dr thought I had ulcer but pathology was negative. I stayed on PPI for about 7 years due to gastro reflux until I became pregnant and I went off for 4-5 years. My allergy dr put me back on PPI because I would wake from sleep gasping for air and he thought acid was to blame.

I continued taking PPI for several years. I began suffering with severe gastro symptoms despite taking a high dose of PPI and my GP referred me back to my gastro dr. He was stumped by my situation but eventually thought I had a hiatal hernia and wanted to refer me to a surgeon for surgery. I told him that I’d had several recent unrelated surgeries and there was no way I was having another. I happened to ask what are the risks of continuing meds. By this time I was taking max dose of PPI and max dose of rx acid blocker at night.

He told me about the possibility of calcium, magnesium and b12 deficiencies but said he could test me for those, which he did. He was surprised that my b12 came back at 282 and ordered monthly shots for two months—cyano SC. I had also began taking oral b12 the the week after my first injection because I was so exhausted again. When follow up blood work showed 480 b12 my dr told me that since I was taking daily large doses of oral b12, that he said I would probably need to go back on shots.

I didn’t understand at the time that he was telling me he didn’t think I was absorbing the oral b12. I became convinced that all I had to do was discontinue the PPI and take oral b12 and I would be cured. I got off the PPI and continued taking large doses of sublingual b12 for three months. I became sicker and sicker but became fixated on the possibility of taking the wrong type of b12 and playing with the amount of daily dosage. Nothing seemed to help. My anxiety was severe and constant but when I became severely dizzy I knew something was wrong and made appointment with my GP. It finally dawned on me that I thought there was a problem with my b12 again. I was so sick I could barely drive to my appointment. GP told me she could send me for blood work but I was in agony and she told me the fastest way to help was to give me a b12 shot. I began to see improvement three days later, but it was a long journey for symptoms to resolve with regular weekly b12 injections

My gastro dr has tried to convince me to go back on PPI. I recently relented as an endoscopy showed possible Barrett’s Esophagus and my dr wanted me to take it to prevent future problems, including cancer.

I am wondering has my problem all along been too low stomach acid and not too much? Every endoscopy I have ever had shows gastritis regardless of whether I was taking a PPI. The only difference I notice taking a low dose of daily PPI is a lack of burning in my stomach but I still have some abdominal pain. I have about the same amount of break through symptoms whether I take the PPI or not. Gastro dr seems to think P.A. is likely, but only Schilling could give definitive answer.

Have we been on the wrong track all along with the PPI? Does anyone have thoughts or similar experience with this? Thanks in advance!