After 3 years of a whole heap of rubbish tests including scans and endoscopy I finally convinced gp to do B12 test (doc: 'it won't be low as you aren't anemic'). It was low.
So B12 is 170 (187-883)
Iron is 24 (20-200) - so apparently fine
And haemoglobin is apparently fine - don't have figures.
Had my first shot today and asked if they would be testing for PA. But apparently as I am not anemic according to haemoglobin test I can't have PA. Sounds plausible I guess but I have very little faith in doctors who would prefer to prescribe therapy, anti-depressants, PPIs and compression stockings than test for B12...
Is this right - so I just have a B12 deficiency with no apparent cause? Doc reckons it is my age (I'm 40...!)
And does it matter - as long as they are doing the shots?
Any thoughts from the very helpful people on here??
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HCC2
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That makes a lot of sense as my folate was high normal. I think I am giving up on GP and going to get private tests. Its too distressing to battle every time I go in and be patronised as though I am stupid.
HCC2 - You are so right about GPs being patronising, ignorant and unconcerned about patients' welfare! Over keen to push antidepressants since their surgeries receive money from greedy Big Pharma.... I had a one year battle with GP to obtain B12 injections. Don't give up, look up guidelines on PAS (pernicious anaemia society), write to GP listing all your symptoms and include copy of guidelines, highlighting what is relevant... This is what I did to obtain the correct treatment... It's an absolute disgrace patients have to fight to get what a decent and able doctor should do IF doing his/her job correctly and for which they are extremely well paid.
Persevere with GP, don't give up because it is precisely what they rely on, patients giving up in the face of adversity, simply because it's what too many people have done for much too long... letting useless and uncaring doctors bully them into submission. Insist for referral to Gastroenterologist to test for possibility of PA. Don't give up.
Over keen to push antidepressants since their surgeries receive money from greedy Big Pharma.
Here we go again.
Could you please explain why 'Big Pharma' should give huge amounts of money to GPs to push antidepressants given the following facts...
To do so would be illegal and all you'd need would be a couple of honest GPs to blow the whistle.
'Big Pharma' doesn't even make the vast majority of antidepressants prescribed in the UK. They are all off-patent and are made by 'Teeny-Tiny Pharma' who don't have large amounts of cash to give to GPs.
The reason they don't have have massive piles of cash is that the antidepressants they sell are so cheap. One capsule of fluoxetine (Prozac) costs £0.03.
if 'Big Pharma' we're going to bribe GPs then they would be bribed to ignore the cheap, generic, antidepressants and, instead, prescribe the less well known, patented, antidepressants that actually earn 'Big Pharma' some cash.
That compete nonsense . You don't have to have anaemia to have Pernicious -Anaemia. The name is a misnomer ! And if you do have anaemia when you have PA , It's the macrocytic type caused by having over large red blood cells , which is caused by B12 deficiency , not by lack of iron . Tell your doctor to look that up ( no, on second thoughts , don't . You will have a black mark for showing up the doctor !) Macrocytic anaemia can happen when you gave been deficient for some time .
You can have PA at any age . It is more common when you are older . Babies can have it .Your B12 is low . You need 6 loading doses , then at least one injection every 3 months . If the symptoms persist , then more often ,which your doctor won't want to give you and then you will have to self inject ! If you eat meat , fish and dairy products( they contain B12) the cause is probably PA , which is a lack of B12 because of malabsorption The Intrinsic Factor Antibody test is what you need . But it is notoriously inaccurate . You can test negative , and still have P.A. If positive , then you do have PA !. Do you take metformin for diabetes , or a PPI ? Both of these inhibit B12 absorption.
Did your doctor test your folate levels (Vitamin B9)? You need plenty to work successfully with B12 . Contained in green leafy vegetables, or take a supplement .
I do not have aneamia as such as my haemoglobin levels are in norm however I have low B12 (118 ng/L) , high intrinsic factor antibody of 108 u/mL (range 0-24) and enlarged erythrocytes (upper MCV range but still within just) .
As such I have been diagnosed with PA. I have also been negatively screened for coeliac disease and my liver function is spot on.
anaemia is a term meaning that your blood cells are abnormal- there are lots of different types - iron based anaemias tend to result in red blood cells being smaller than normal. folate and B12 deficiencies tend to result in red blood cells being larger and rounder than normal.
The anaemia caused by folate and B12 deficiencies is a symptom of the deficiency and may be the cause of some symptoms but there are a lot of processes that the body uses B12 and folate for and symptoms could well be caused by other processes not having enough B12 to run correctly. Macrocytic anaemia is not present in 25-30% of people when they initially present with a B12 deficiency.
The usual tests for PA - IFA and GPCA are pretty unreliable. However, it is worth knowing what the cause is - coeliacs is another possibility - drug interactions are another - low stomach acidity is another - which may or may not be because of PA. H pylori infection is another.
If your don't have other vitamin and mineral deficiencies at present that would probably point to something that is specifically affecting the ileum - and PA is the most likely cause - unless you have had surgery that could have affected the ileum.
Most causes have other consequences - h pylori is treatable - so it is worth knowing what the cause is - so that you can be monitored for the other consequences.
Thanks for all the information - very helpful. I have tested negative for coeliac and H Pylori and my stomach acid is high enough to be prescribed PPIs (which I don't take).
At the moment my GP has prescribed a loading dose of 6 shots over two weeks and then every 3 months. She didn't say if they would ever stop (and if age is the cause in her eyes then that is never going to improve!!). At the minute I am thinking that maybe I will push more if and when they try and stop the injections. She has also advised an oral b12 to take in between injections.
Of course I can just ask the next time I visit the GP as I will probably get a different answer. I have seen 6 GPs in 3 years at my practice (not by choice) and they all give different advice so maybe the next will be convinced to test for PA.
I am just wondering though - if the PA tests are not wholly accurate and I am getting the regimen that would be advised for PA (at least at NHS level - I am not sure every 3 months is enough for everyone) - do I need to pursue a diagnosis yet?
Your comment about PPI's and stomach acid caught my attention. Are you sure it's not *too low* rather than too high? As others have suggested, low levels of stomach acid can cause absorption problems too. I used to get heartburn on a regular basis, especially when crouching or bending over for long periods during gardening, housework etc. I read about the "Baking soda challenge" test for stomach acid levels and based on the results (no gas / belching after 15 minutes!) thought it possible I had low levels of stomach acid. I bought some Betaine HCL tablets from Amazon (with added Pepsin) and after a few weeks my heartburn was gone. Since then my B12 sysmptons have reduced considerably, and even though I'm supplementing, I feel the "uptake" / absorption has improved significantly since *raising* my stomach acid levels.
Well back in the day when I believed everything the doctor told me, they told me it was high...I do have gastritis (diagnosed on endoscopy) and when I first took PPIs (before I decided they just mask a problem) the heartburn and back ache did get better. I guess I don't really know but its a best guess
Thanks for your reply. But one does hear that " heartburn" can be caused by low stomach acid . If stomach acid is normal , the oesophageal sphincter closes very tightly to prevent reflux . If stomach acid is low , it doesn't get the message to close tightly, so some of the weak acid refluxes. This manifests itself as awful pain . The PPIs will totally neutralise this weak acid and therefore no heartburn. But poor absorption of vitamins and minerals results . Some people take betaine hydrochloric acid , with pepsin capsules to remedy this . It is tricky to get dosage right .Some people find drinks of diluted organic apple cider vinegar helpful, or lime juice . But no doctor would advise this . They always turn to PPIs . They famously inhibit the absorption of B12 , which is always difficult , needing stomach acid and Intrinsic Factor . We just have to work out our own salvation !
That's useful to know. I am going to have to do some trial and error I think. Good to know there are natural remedies too - not a fan of lots of drugs.
Thank you seamail57. That is such a good article . I have printed it out . I will go and pin it up,on the notice board at the surgery ( no I won't . I would be excommunicated ! The docs have to keep in with big pharma and prescribe PPIs - Very big money spinners )
I did this this morning and it certainly looks like my stomach acid could be low. I am going to try the ACV and see how I get on. I am most excited by the prospect that low acid could be causing my wheat sensitivity. I miss bread soooo much!!
I do not understand how my GPs can be so misinformed (although as you say they may just be trying to make money from the PPIs, I suspect the keenness to dole out anti-depressants might have a similar background. ) I do think some GPs are really good - I am just unlucky. And when I told the receptionist I needed 6 nurses appts over 2 weeks I was basically told I was being greedy and it was not fair on other patients and not possible!! We got there in the end but everything is struggle and requires an argument...
I am not sure that your low stomach acid is the cause of a wheat / gluten intolerance, but low stomach acid and / or gluten / wheat intolerance can certainly cause mineral and vitamin absorption problems (such as B12).
Taking ACV didn't do much for me I got on much better with the Betaine HCL with pepsin tablets. Good article here:-
I honestly wish you all the very best for that . You will get there if you persist . It's always good to come to this forum . I've been helped enormously .
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Iron and B12 deficiency
