I had previously had a blood test for B12 which was apparently normal if a little low. I was told that no treatment was required.I continued to have most of the symptoms of a B12 deficiency so after 4 months and some research I paid for an Active B12 test which showed I was low. I took this to my doctor who said that they don’t recognise Active B12 and are only allowed to go off the “normal tests”. When I said I’d researched Active B12 they said they would need to retest my blood. I said I was concerned as I’ve been taking Omeprazole for many years which could be affecting my ability to use the B12 in my body. I was told that it was unlikely and to go to the chemist and try taking 10-50 mcg Cyanocobalamin and then get my bloods done again next week - standard test not Active B12 levels. My sisters and Mother all require(d) B12 injections.
I feel like I need help but fear that I’ll get nowhere.
Any advice would be appreciated.
Written by
GSDLover17
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If you supplement before getting retested it could affect the chances of getting a diagnosis. Omeprazole can affect the ability to absorb b12 from animal food sources due to reducing stomach acidity - that impacts the ability to remove B12 from animal protein. However, unless you have PA, the absorption of supplemental B12 would not be impeded by the low stomach acid as supplemental B12 is not attached to a protein. The dosage they recommended is very low and would be insufficient to treat a deficiency, it's even below what I would use for maintenance if there was no other B12 in the diet. It indicates to me they probably don't think you have a B12 deficiency or any problem with the main absorption mechanism.
You must not do what has been asked of you , namely to supplement with B12 tablets . That will skew the blood test,that they want you to take afterwards , which is what they are obviously trying to do . The blood serum test, which is the one they want you to have , can be up to 80% inaccurate, including inactive b12 which your body cannot utilise .That's why an active b12 test is much more accurate.
It is medically acknowledged that Proton Pump Inhibitors like Omeprazole , inhibit the absorption of B12 , That a doctor should say that is unlikely, especially when you have been taking Omeprazole “ for many years “ , is absolutely incredible !!! . A P.P.I. should only be taken for a short time . As it is a prescription only drug , you should not have been able to take it for so long . …………. ..
Also you have the fact that your mother and sisters required and require B12 injections . This raises another question , as B12 deficiency / Pernicious Anaemia can have a genetic link .
It’s not true that doctors only accept the “normal” B12 blood serum test . I don’t like the sound of what they are saying and telling you what to do .ON NO ACCOUNT TAKE ANY B12 TABLETS AS YOU HAVE BEEN ASKED. before you have another b12 test . . You have the proof of the active b12 test and you have b12 deficiency symptoms , which are very debilitating.
I would go back to your surgery and ask for your B12 deficiency to be investigated thoroughly . If you get no action , change doctors . . But do not supplement with b12 before you have another b12 test . It will screw the result . I cannot underline that too often . You need to know why you have a low b12 . Could be a combination of reasons . The Omeprazole and the genetic link . If the test they did 4 months ago was low , another one will now be lower , as long as you haven’t been supplementing.
Did you get a copy of the original blood serum b 12 test ? You are legally allowed to have one . You really need it . But most important is that you have b12 deficiency symptoms . You need to know the reason or reasons why . You probably feel quite unwell with those B12 deficiency symptoms. But try to stay strong , and don’t get fobbed off
Take the B12 serum test without having any supplementation and get a print -out of the result . .
I hope you get a better response with better advice than mine . Best wishes .
Yes- taking B12 can mess up the test results making it harder to convince your doctor that you need B12 injections. But if you do want to try B12 for possible PA, then you need a really high dose. Try at least 1000mcg sublingual. That worked for me for several years but now I need injections.
But I think it woukd be very unwise to supplement now If an active B12 test shows B12 deficiency now and the blood serum test of ;4 months ago was low , a blood serum test taken now would certainly show deficiency. as long as there has been no supplementation . That is what is needed for the doctor to take this seriously, as stupidly they will not accept the active B12 test . Goodness knows why not .
Then there is the genetic link where close relatives , mother and sisters have B 12 injections . This must also be taken into consideration . And also GSDLover17 ‘ s B12 deficiency symptoms .. So I would take the blood serum test , but not , definitely not , supplement beforehand . .
Its tricky.Oral B12 does work fior some if caught early.
Did for my sister.
Not for my mum,daughter or me ??
Did for my husband. Not blood related but already has an autoimmune disease.
Also if a known cause of deficiency.
Omeparazole as we know slows absorbtion.
Injections could be avoided .
If only doctors wouldn't rely so heavily on blood tests.
And are better informed.
If the levels are raised by tablets but symptoms remain they should then introduce injections 💉 but as you rightly say mostly don't.
I really don't think the doctors are wanting to skew the blood result on purpose but it's from ignorance of the condition.
They truly believe once b12 levels are up its sorted .
Few use their clinical skills and listen that symptoms aren't resolved and get specialist advice or a trial of b12 injections if tablets failed to reduce symptoms.
I've had the trial of oral b12 recorded on my notes.
Had no effect as a reference if another G.p tries !!
Such a mine field.
Hopefully GSDLover has tried b12 supplements in the past and they haven't worked and if so definitely not try again at this stage .
Symptoms are the most important .Did you also have folate ,vit D , thyroid, and iron tested,IFAB tested??
Doctors in the main will only act on tests ordered by them results from the labs the NHS use.
I think the oral dosage suggested very low to have any effect.
I was put in a trial of 50mg 3x a day by Gp.
Only to reduce injection frequency.
I was disappointed had no effect.
I upped it to 1000mg then 3 0000 then decided I wouldnt spend any more on sublingual ect.
I was however already having b12 injections as symptoms severe and b12 very low.
Saying that my husband tested low ( out of range ) b12 and fortunately a low dose of daily b12 tablets brought him well into range quickly so he continues with a low maintenence dose of b12 daily .
His diet includes everything so absorbtion must've slowed.
His symptoms were fague .
Weary ,run down but improved.
The trial of oral b12 may work.
If it doesn't though it will raise b12 in your blood and doctor will say sorted despite symptoms remaining .
Doctors rely too much on blood tests and not on your symptoms .
They have very little training on b12 .
Ask for a referral to gastro.
Depends if the reasons the need for omprazole is low b12 ??
Are you U.K. based and therefore, using the NHS ? If so, I am very aware that they can turn around and say, that is not one of our tests (with regards to Active B12) and not even bother to look at it.
You have a strong family history.
Have been told to take oral tablets.
Taken omeprazole for years.
You do not mention your symptoms. This disease/condition is ALL about that.
I agree with wedgewood, change GP. On your registration form in Hard Copy write :-
Family History - Pernicious Anaemia - Mother & Sister treated with 1mg/ml of hydroxycobalamin i.m. for decades.
Photocopy it before giving to Practice.
However, just before you leave old practice get Hard copies of your blood results. Have a look at the ranges and cut-off levels for B12.
I agree 100% . I find it odd that the patient has been taking Omeprazole “ for many years” but the doctor thinks that it is “ unlikely “ that this could cause b12 deficiency , when the patient already has B12 deficiency symptoms. Incredible ! It is also known that the serum blood test can include up to 80 % of inactive B12 . This test is from more than 4 months ago , so is likely to have dropped further . This could be ascertained with another test now —(but not if supplementation occurs . ). But low B12 has already been revealed with the active B12 test , which the doctor refuses to acknowledge. Again incredible.
There is also a genetic link to B12 deficiency/ pernicious Anaemia ( mother and sisters having B12 injections )
The patient is an Omeprazole user , but could also have Pernicious Anaemia —re genetic link — two reasons for careful investigation .
We hear on this forum nearly every day that doctors are trying to avoid giving B12 injections …………….. and the damage that it causes .
‘The NHS, private providers, the regulators and professional bodies, pharmaceutical and device manufacturers, and policymakers are disjointed, siloed, unresponsive, and defensive.’
I was prescribed Omeprazole decades ago after diagnosis of a hiatus hernia and very bad reflux problems… having had an endoscopy… A few years later I told the consultant who did the endoscopy that I wanted to stop (slowly) using the omeprazole… but he replied that in his opinion it was better taking omeprazole than getting cancer of the œsophagus as he often sees this… so I found and still find myself between a rock and a hard place… Recently I had another endoscopy because of pain in oesophagus, problems swallowing and losing weight rapidly although my diet had not changed… I even was indulging in eating naughty sweet foodstuffs. Usually when eating such products I put on weight rapidly… So the endoscopy showed I had a oesophageal fungal infection, quite pronounced and had treatment which seems to have resolved the problem. The lack of stomach acid being the cause of such an infection of course. However I really do not want risking oesophageal cancer … being immunosuppressed… so do not know who to consult in helping to resolve (or maybe not) this problem. However I only take omeprazole every 2 or 3 days now. I inject B12 having done so for a few years now but what a battle I had with the GP to be prescribed B12 ampoules. Also one is supposed to take folic acid after a B12 injection but I understand that’s not really good enough. So what should I take, how much, when and how long for after B12 injection, please ? I take strong medication for RA (biologic injections) combined Levothyroxine and Liothyronine, Pravastatin, prednisolone (5 mg) and VitD3, VitK2MK7, and Magnesium Glycinate capsules… so have to manage the timing between medications and supplements. Sorry about such a long post… and thank you for reading it all.
I have never heard of omprezole preventing cancer or reflux causing it. Is there any way to check out what the doctor said. Is you thyroid treatment optimal if you are still hypo that could explain gastic problems?
Yes active gastric reflux (hiatus hernia) does damage the oesophagus, first developing Barrett’s syndrome ( pre cancer) then leading to cancer if left untreated… Always best avoiding BS… Omeprazole, a PPI (proton Pump Inhibitor) in long term use, destroys stomach acid which is needed to break down foodstuffs and kill negative bacteria. Check online… there are many interesting research works.
Well different laboratories have slightly varying parameters. They are always shown in the written test , in brackets, after the test result . But a result of 131 would always be below range .representing low B12 annd calling for treatment . Are you experiencing B12 deficiency symptoms ? I would have thought that you were at 131 . ( look up the many B12 deficiency symptoms—there are quite a lot . , You would not have them all of course -just a handful ! ) Exhaustion being the most common .
That result you quote is a blood serum result . A blood serum result includes inactive B12 ( can be as much as 80% ! ) which cannot be used in the body .
A more accurate result can be obtained from an ACTIVE b12 test . This is a more expensive test and some surgeries in U.K. don’t use it . Best wishes .
One gp told me there was no such thing as active b12. Many of them don’t understand the value of active b12, or homocysteine because they haven’t been taught anything about them.
They are generalists, so have a broad knowledge of thousands of conditions, diseases, illnesses but know very little about details. Some are honest and say, I do not know that and are interested to learn more. Others ‘wing it’ meaning improvise. This works very well on television and particularly, in comedy but often, I have looked at doctors spouting nonsense. Whilst, I am thinking, Hmm, what is wrong with you ? I generally do not diagnose Narcissistic Personality Disorder or Munchausen syndrome by proxy. Maybe they are just Hangry. Often I ask, Do you like your job ? How do you relax ? Following up with It is stressful being a doctor.
I am from a family of them. Plenty of stories on the inner workings of the NHS. 😉
I thought I had good GP's in NHS land but look back now and I'd call them Thrawn because they dont know and even more thrawn if ye suggest anything. . . . . One even told me a little knowledge is dangerous. . . . . .
Indeed a little knowledge from patients is dangerous for GPs who are ignorant, arrogant and often lazy… not many enter the profession in order to make a difference (yes a few) but rather for the status they enjoy and the money… allowing them a decent lifestyle. As for being stressed out… well I know many people who are stressed out and exhausted and still do not earn enough to have an acceptable lifestyle… Am losing my patience..
Because they aren't listening to the symptoms, state them clearly, state the family history, repeatedly. They have you down as TATT and 'worried well'. Just keep making appointments.
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