Assistance required with interpreting B12 and Pernicious Anaemia Blood Tests.....

[ARRozental]

Hello

I was wondering if anyone here could help me in interpreting some Vitamin B12, Intrinsic Factor Antibody and Gastric Parietal Cell blood test results. I had one set of Vitamin B12 and Serum Folate tests, as well as a set of Pernicious Anaemia tests before my course of six 'loading' B12 doses and a subsequent Vitamin B12 test after the 'loading' dose course. All of the results are listed below:

Pre- B12 'loading' dose course:

Serum Folate (CSW) - Normal 4.2 ng/mL

Serum Vitamin B12 (CSW) - 164 pg/mL

Lipaemia comment (CSW) - Normal - Sample lipaemic, this might slightly increase some results. Please view all results with caution.

Pernicious Anaemia Screen:

(EHG186)- Normal

Gastric Parietal Cell - Negative, <40

Intrinsic Factor Antibody - Negative

Post- B12 'loading' dose course:

Serum Vitamin B12 (CSW) - No Action 1263 pg/mL

As you can see, the B12 level before the loading shots was 164 pg/mL and 1263 pg/mL after the shots. Does this constitute a good improvement?

[ARRozental]

The reason for me asking for an interpretation of these results is that, after an initial feeling of a slight improvement of my physical symptoms (less fatigue, less muscle/joint pain, less clumsiness), I now feel as bad as I did before my loading doses administered a month ago and I never saw any improvement in my mental symptoms (concentration, short term memory, pressure headaches). I did raise this with my doctor today and informed him of the NICE guidelines regarding the treatment of B12 deficiency where mental symptoms are present (continual B12 doses administered on alternate days until no more sustained improvement of symptoms occurs). He replied that he would not resort to that yet, given my high post-'loading' dose B12 blood test result, and the fact that he did not believe that a diagnosis of Pernicious Anaemia was warranted from my Intrinsic Factor and Parietal blood tests. He has booked another B12 blood test in just over a week's time and a follow up appointment with him to discuss the results.

Was this the correct course of action for the doctor to take? Should I consider self-medicating with Vitamin B12? Should I consider taking Folic Acid supplements despite the normal Folate result?

Many thanks for your responses.

[ARRozental in reply to ARRozental]

I should also add that the ranges for the Serum Vitamin B12 and Serum Folate tests quoted on the test result sheet are as follows:

Serum Vitamin B12: 187.00 - 883.00 pg/mL

Serum Folate: 3.10 - 20.50 ng/mL

[Gambit62 Administrator]

The improvement in serum levels is an inevitable consequence of the loading shots. Serum B12 isn't a particularly useful test post loading shots. It tells you that a lot of B12 has been injected in your blood and that a large amount of it has already been removed by your kidneys. It doesn't tell you what is happening at the cell level.

IFA negative is inconclusive - a positive is good for showing that you have PA (unless done to close to supplementation) - but a negative is a long way from ruling out B12 deficiency because it gives false negatives 40-60% of the time depending on the test method.

Your folate was quite low - have you been supplementing - sorry - can't remember your earlier post in detail.

[ARRozental in reply to Gambit62]

Thanks for your response! I take your point that the high B12 value on the post-dose test is a direct consequence of the B12 dosing. If I have a B12 deficiency problem, should I expect the B12 value of my next test (in just over a week's time) to be substantially lower than that of the previous test? Is there any other type of test that I could request, other than the B12 Serum test that would shed some light into what is occurring at the cellular level?

I have heard that the Intrinsic Factor Antibody test can be inconclusive. Apparently, if the test is positive then it is a good indication that you have Pernicious Anaemia, but it is possible to have Pernicious Anaemia and have a negative test result. However, I also had a Parietal Cell test, which I assume tests for Parietal Cell Antibodies (it just says Gastric Parietal Cell on the test printout), and it is also negative with a reading of <40, although I don't know what the '<40' value means?

I agree that the Serum Folate reading is on the lower end of the range. I have not been supplementing Folic Acid, nor have I ever. Would it be a good idea to start supplementing it? If it turns out that I am unable to absorb B12 normally, will I also have to have Folic acid injected directly into my muscles?

Many thanks for your response!

[ARRozental in reply to ARRozental]

With regards to my Pernicious Anaemia tests, does the fact that both the Intrinsic Factor Antibody and Gastric Parietal Cell tests are negative make a diagnosis of Pernicious Anaemia less likely?

[Gambit62 Administrator in reply to ARRozental]

as I understand it negative GPC isn't entirely conclusive either.

Because of the way the tests are done there is always a grey range where you can't be sure because the result could be because the test result is picking up another chemical that is very similar. That's why the test is looking for a value >40 as being indicative that there really are antibodies present.

oral folate should be fine for supplementing - and folic acid from a supermarket is generally okay.

Not entirely clear why your levels are being continually monitored - seems like a waste of money to me. Tests that may help to pickup a functional B12 deficiency are MMA and homocysteine - but they need to be done in a context that rules out other reasons why these chemicals are high. They will build up in your blood if your cells don't have enough B12 to recycle them so they are secondary markers.

Note: There is some debate about whether levels not being raised rules out functional deficency.

[ARRozental in reply to Gambit62]

Am I to understand that there is no fully accurate test for Pernicious Anaemia? In that case, I suppose I can only go by the symptoms alone.

I have experienced intermittent and extended bouts of constipation and instances of feeling 'bloating' for the last three years (which in and of itself began about half a year after my other symptoms began). I have mostly ignored it, as it seemed to dissipate and return later. More recently (the last five months), however, it has become more permanent with relatively mild associated abdominal pain. As such, I mentioned it to my doctor today and he asked me to maintain a food diary and record changes in bowel movements for my next appointment in a month's time. On the strength of this, it might be possible that the B12 deficiency was caused by a dietary intolerance or some intestinal problem. I was tested for gluten intolerance a year or so ago, which was negative, although I am aware that the gluten blood test is mostly inconclusive (for much the same reason as the Pernicious Anaemia test) and can generate false negatives. Apparently a gut/intestinal endoscopy/biopsy is the only way to ascertain dietary intolerance with any degree of accuracy- I say good luck to my doctor prescribing one! Hopefully, my food/bowel movement diary will shed some light on this and find some correlation between what I am eating and my constipation/bloating.

I take your point that it is probably useless to continually monitor Serum Vitamin B12 levels, and that a sufficiently high reading will be used to deny me B12 treatment at a greater frequency than three months. As such, I am considering the self-medication route, at least in the short term, to begin after my next B12 blood test in just over a week. From reading some of the threads on this forum, I understand that it is quite difficult to overdose on Vitamin B12, so it should be reasonably safe for me to take B12 for a few months and monitor the effect on my symptoms. Should I start with Vitamin B12 tablets and progress to self-injection if symptoms do not improve, or should I just resort to self-injections from the outset? As I have neurologic symptoms (lack of concentration, poor short term memory, slower cognition), perhaps I should seek to replicate the NICE guidelines myself?

Thank for your advice regarding Folic Acid. I will purchase some supplements from the supermarket tomorrow and begin taking them daily.

Finally, would you recommend that I mention the MMA and Homocysteine tests to my doctor?

Many thanks.

[Gambit62 Administrator in reply to ARRozental]

you could ask Dr about MMA and homocysteine but you would probably need to stop any form of supplementation/treatment - tests are more complex and you may need to go to a hospital to get them done, though there are some places that do them privately.

hope you get to the bottom of gut problems - have you been tested for low stomach acidity - which might cause many of the problems.

There was a good test for PA - schilling test - but it is no longer available due to lack of the relevant isotope of cobalamin

[ARRozental in reply to Gambit62]

I have not had a stomach acidity test. I went through a six month period of heartburn and acid reflux symptoms in the middle of last year, however after some short term anti-acid medication it seems to have subsided, and only re-occurs for about 24 hours every few months or so. Is low stomach acidity linked with Pernicious Anaemia?

[Gambit62 Administrator in reply to ARRozental]

yes low stomach acidity is linked to PA and also to more general B12 absorption problems.

antibiotics sounds like h pylori infection.

[Sleepybunny]

Hi,

My personal opinion (I'm not medically trained) is that if a person is symptomatic for B12 deficiency with other conditions ruled out and their symptoms improve while on b12 treatment then they almost certainly have B12 deficiency whatever the results of diagnostic tests.

Flowchart from BSH Cobalamin and Folate Guidelines (UK document)

stichtingb12tekort.nl/weten...

If you look at bottom right of flowchart, it suggests that doctors should consider continuing B12 treatment in patients who respond to b12 but whose secondary tests eg Homocysteine, MMA are normal range.

Are they going to test for H Pylori infection?

Parasites

Have you ever eaten raw or undercooked fish? Have you ever spent time in a place where intestinal parasites are common?

Fish tapeworms can lead to b12 deficiency in humans.

patient.info/doctor/cestode...

b12deficiency.info/blog/tag...

A link about low stomach acid

drmyhill.co.uk/wiki/hypochl...

Misconceptions about B12 deficiency (English language article from Dutch b12 website)

stichtingb12tekort.nl/weten...

Potential Causes of B12 deficiency

Are any of these relevant to you?

b12deficiency.info/what-are...

[toph]

IFAB TEST gives false positive results and serum b12 testing is done useless so much so some countries no longer use it and prefer to use the active B12 test which should be used in the UK it is disgraceful that it isn't