I am after some help with interpreting blood test results. It has taken me over a year of to get access to them all. But I cannot have a sensible conversation with a GP or consultant about them'
Following a GP spotting that I have low B12 (114) in March 2013 I have been trying to find out the cause. That GP told me I required B12 jabs for life.
A gastroenterologist has written to me on two occasions stating that a test for intrinsic factor was rejected twice. In another letter I was told I have been screened for pernicious anaemia twice and the results were OK.
According to a nurse at my surgery the test for intrinsic factor was never done. It weas rejected by the lab.
At an appointment in December 2014 the gastroenterologist stated that because the other test results are fine I do not have pernicious anaemia and do not require a test/ screening for PA as the other tests show I do not have it. He went on to state that I have all the symptoms of depression and mental illness and that I am just ‘latching on to B12’ as the cause (e.g. numb hands and feet, dizziness etc.). He previously told me my symptoms were due to low B12 which was diet related. According to the consultant my low B12 has self corrected and the higher reading of 540 in March 2014 is nothing to do with me receiving B12 injections for 12 months. He has also decided that my diet was fine.
My B12 injections were completely stopped. I am now self treating with B12 injections bought online.
After a year of asking to see test results I managed to get them from a nurse at my new surgery. Below are results from March and October 2013, and March 2014. Does anyone know which of these relate to pernicious anaemia testing? Or if any of them are significant.
TESTS in March 2013
Serum ferrin level (XE24r): 115.9ng/mL
GFR Calculated abbreviated MDRD (XaK8y): 60mL/min
Blood haematinic levels:
B12 (EX2pf)113pg/mL
Serum folate level (45U5) 7.4ng/mL
Full blood count:
Haemoglobin concentration (Xa96v): 128 g/L
Total white blood count (XaldY): 6.2 10*9/L
Platelet count – observation (42P..: 280 10*9/L
Red Blood cell count (426..) 4.32 10*12/L
Haematocrit (X76tb) 0.394L/L
Mean cell volume (42A...) 325g/L
Mean haemoglobin level (XE2pb) 29.7pg
Mean cell haemoglobin concentration (429...) 325 g/L
It looks like they did a parietal cell antibody test on you in March which came back negative. Some doctors get confused when it comes to intrinsic factor and parietal cell antibody tests. They'll think that they only need to test for one or the other (this happened to me with my doc) and they'll assume that a negative for one is the same as a negative for both. That's not actually true. On top of that, the parietal cell antibody test isn't specific to pernicious anemia (it could indicate something else if it came back positive) and the intrinsic factor antibody test is unreliable (so it could come back negative but still not actually rule out a person having pernicious anemia). As to the rest of your test results, it is difficult to say much without knowing what the lab's reference ranges were. You may need to request the reference ranges if they weren't included in the results you received. I'll never understand how a lab can refuse to do a test that has been deemed worth running by a physician. Who's in charge? Ugh.
Did your GP ever let you have the IF test? I think my test results were all in range, except for my initial B12 test. I was just wondering whether any of the tests are specific to PA. Not sure that I'll ever get to the bottom of the low B12 or my continuing stomach problems.
Yes, a year later I went to a hematologist who ran both the parietal cell and intrinsic factor antibody tests. They both came back negative at that point. The weird part is that my earlier parietal cell antibody test had been positive. So I fall into the category of first being told that I had PA and then being told that I don't have PA. Officially my B12 absorption issues are due to 'unknown cause' now.
I've gotten to the point where I don't care about the official diagnosis as long as I can still get the B12 I need. It took me awhile to get to that attitude though. I suspect that I do really have PA but that the tests are just too unreliable to pick it up in me.
Unfortunately after you start supplementation B12 levels don't mean an awful lot unless they continue to be low. However, I would regard 540 as being particularly high or indicative that things have actually righted themselves - probably the opposite.
Personally think the gastro that spoke to you, told you it was depression and and took you off B12 should be taken out and shot.
Depression and anxiety are both potential effects of B12 - as are the numbness
The tests for antibodies are known to be unreliable at best. It is also known that B12 serum is not a particularly good test for B12 deficiency, that there is a huge grey range and that treatment should be based on symptoms not test results.
You may find this page on the B12 info site useful in terms of trying to get through to your GP though think it might also be time to think about moving to another GP
In terms of establishing the cause of B12D - PA is just one potential cause - and a negative test result doesn't rule that out because test is inaccurate - but there are also a lot of other potential causes - eg gastric surgery affecting illeum, drug interactions, changes (reduction in stomach acidity) as you get older and personally I think you could drive yourself mad trying to get to the bottom of it all. Think you would be much better off trying to focus on actually getting the right treatment ... or probably finding the right GP to help you get the right treatment.
Thasnks for your reply. I did move to another GP surgery. However, they have told me that once your levels increase with treatment they always stop it until your levels decrease again. Wish I earnt enough to go private
Sounds like they aren't keeping up to date with current developments. Have you told them that there have been changes to advice in UK which is now to treat on the basis of symptoms rather than test results.
In fact the guidelines say
Ongoing monitoring of people being treated with vitamin B12 or folic acid is generally considered unnecessary (unless a lack of compliance with folate treatment is suspected, or anaemia recurs).
That's great. Thank you. I have been thinking about writing back to the consultant with some general information about B12 and my general thoughts on his attitude. This may help me to be a bit more constructive.
The trouble I have found in the past about taking information to an appointment is that you can take all the leaflets and guidelines you like, but you can't make the doctor read it. My previous GP refused to look at the information I took and would not discuss it with me, she just said she knows all she needs to about B12. I abandoned the information on her desk with the parting words ‘well I don’t think you do know enough’.
My new GP surgery has been very clear that the NICE guidelines are only guidelines and they don't have to follow them. Their view is that it is the clinician’s decision and no one else’s.
I know that I’m not depressed or anxious at the moment, but having to deal with some health professionals is enough to tip me over the edge!
I’m just glad that there are forums like this one where you realise that you are not alone and people provide you with lots of useful info.
Hope you do manage to get people to see sense. And yes, guidelines are guidelines but in terms of deciding whether you have been treated properly I would imagine that following guidelines is something that an ombudsman should take into consideration and would be asking to know what the reasons were for not following the guidelines.
Accountancy works with guidelines that are guidelines but you don't follow them without a good argued reason at your peril.
Can't guarantee that a reviewer would take the same attitude in medicine but would be surprised if they didn't. May be there are some lawyers specialising in medicine out there who have some comments they could make.
You could always ask them why exactly they have chosen not to follow the guidelines in your case.
I don't think they are following the guidelines for any of their patients. I'm just hoping that over time treatment improves as medical knowledge improves.
Do hope that something happens to make them rethink their attitude - wouldn't want to have the sort of litigious system they have in the US but suspect that they'd be a bit more responsive if we did. Really hope that you find the treatment that works for you. I gave up on GP and self treat - probably costs about £1 per day but would say it was definitely worth it though I know some people couldn't even afford that. Only going back for maintenance shots to keep the absorption problem on my record.
HI,
I must first say that any results not including the labs ref ranges used for normal can not really be commented on. If I look at what my lab uses as "normal" ranges then these results look fine, re:Tests in March 2014
Serum B12 540
Serum folate 6.1
Serum Ferrin Level 126.8"
It does seem to me that you obviously are able to raise your serum B12 with self treating with B12 injections bought online. Your other test results may have a typing error as Mean cell volume (=MCV) (42A...) 325g/L, does not look right.
Just as an example my local lab uses as ref ranges for "normal" : Lab Ref range: Hb 110-165, MCV 79-98, serum B12 161-531 ng/L = 119 - 392 pmol/ L, but an other lab I use uses: HB 11.5-15.5 g/dl, MCV 80-99 fl, serum B12 180-914 pg/ml, serum folate 3.1-17.5 ug/L, ferritin 13-150 ug/L. Homocysteine ref range: 3.00-10.00 umol/L. Different labs have different ref ranges, so one can not really compare.
Anti gastric parietal anti body is one test , but its inconclusive for PA as these antibodies also can exist with other conditions, re: Anti gastric parietal anti body Negative. The only conclusive test for PA is IF antibody test, but only conclusive if positive, not conclusive if negative, it is notoriously unreliable, there is no golden test for PA, see:
The finding of a low total serum cobalamin level may be further evaluated by testing for anti-intrinsic factor antibody (IFAB). If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh, et al 1997), with a concurrent low false positive rate (1-2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40-60% of cases(Ungar 1967) i.e. low sensitivity, and the finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA). In addition, the positivity rate increases with age(Davidson 1989) and in certain racial groups [Latino-Americans and African-Americans; (Carmel 1992)]."
"(b) Gastric anti-parietal cell antibody
Gastric parietal cell antibodies (GPC antibodies) have a low specificity for the presence of pernicious anaemia since, despite being positive in 80% of pernicious anaemia subjects, they are also positive in 10% of normal individuals. Positive gastric parietal cell antibodies may cause gastric acid achlorhydria and progression to pernicious anaemia may occur. However, a positive GPC antibody test is not definitive for pernicious anaemia (Khan, et al 2009)."
It does look like you had low serum B12 re result 2013: B12 (EX2pf)113pg/mL., and should have had treatment continued.
Do you think it is worth me requesting an IF antibody test? I'm fairly sure that my other test results were OK. I was just wanting to know which tests were the ones showing that I don't have PA. I'm assuming that the consultant was referring to the Anti gastric parietal anti body test.
I'm not sure what to do now as I've already changed GP once and now the consultant has written to him saying I have signs of deppression etc.
Do you think it is worth me requesting an IF antibody test? I'm fairly sure that my other test results were OK. I was just wanting to know which tests were the ones showing that I don't have PA. I'm assuming that the consultant was referring to the Anti gastric parietal anti body test.
I'm not sure what to do now as I've already changed GP once and now the consultant has written to him saying I have signs of deppression etc.
The only conclusive test for PA is IF antibody test, but only conclusive if positive, not conclusive if negative, it is notoriously unreliable, there is no golden test for PA, so no way a GP can say you do not have PA either really. There is very little you can do now as you are self treating and all other tests would mean you'd have to stop self injecting B12 for something like 4-6 months to then have tests such as active B12, MMA etc.
Its only you who knows if you also are now depressed, its not something uncommon, but if you know you are not depressed then say so and stand your ground, its what I'd do.
Not much you can do though now you are self treating,
Would the IF test be invalid now I'm self treating with B12?
I'm definately not depressed or unhappy and I made that very clear to the consultant. I think it was his get out clause for not having an answer about my stomach problems, i.e. its easier for him to say his patients are mad than admit he doesn't have an answer!
Its in here some where (you to make sure you do not have a recent B12 injection..I know I did..for the IF test, think the gap has to be at least 5 days, but am not 100% sure :
"Intrinsic factor antibody assays, based on automated chemiluminescence cobalamin binding, are vulnerable to give false positive intrinsic factor antibody results if the patient has had a recent cobalamin injection. Manufacturer product literature warns that these assays are only suitable for samples with a specified upper limit of serum cobalamin levels, and laboratories must comply with this advice. Results of assays using these methods should not be reported if the serum cobalamin is greater than 295 pmol/L (400ng/L) based on UK NEQAS survey data. True immunoassays for intrinsic factor antibody based on porcine or recombinant intrinsic factor binding can be used for post treatment samples."
Thanks for the information. I will have to decide whether or not I think its worth stopping my injections and then requesting the test. I'm injecting on a weekly basis at the moment and feel a lot better for it. Not sure I like the idea of feeling how I used to, even if it is just for a short time.
Its just a shame the the GP who requested my first B12 test didn't then go on to request other tests before starting my B12 treatment.
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