Blood results

[Padeficiant12]

Please could you tell me if fbc looks ok please? This is result of my last blood test, b12 last time was 217, im due to be retested for b12 levels in December again. I think some of my numbers look high ?

[fbirder]

Nope, nothing looks high there. The MCV is the one that might be affected y low B12 and it's totally normal.

For most of these tests the normal range really does fit most of the population, with only a few outliers. It's not like the serum B12 test where the normal range is set to avoid too many 'normal' people falling below the bottom of the range.

[Padeficiant12 in reply to fbirder]

I dont understand as my b12 has dropped from 350 to 217 in a few months, its not diet related as i eat well, im not sure whats causing is, is there any more tests i could ask for ? Thankyou

[Gambit62 Administrator in reply to Padeficiant12]

25% of patients with PA present without anaemia.

Not all of the tests above are to do with anaemia - Haemoglobin A1C is a protein that is a good marker of how well you are controlling blood sugars so is used as a test for diabetes

The drop in B12 does look significant which would be indicative of an absorption level (body normally regulates levels quite well at whatever is right for you as an individual using stores in the liver but if you have an absorption process then the mechanism that allows you to use stores in that way also doesn't work so the stores get used up and then levels start dropping).

I see from your previous posts that you were on injections and have had them removed. Guess you must be feeling pretty awful by now as your levels are probably far too low for you now.

Have you written to the practice pointing out that you are not being treated in accordance with current guidelines and best practice and that they may be putting you at risk of permanent nerve damage?

[Padeficiant12 in reply to Gambit62]

Yes i wrote to the practice manager, she telephoned me and i got given an appointment with the nurse, who sat with me for ages, didn’t agree with me that my stomach issues and pain were maybe linked to b12 deficiency and she said yes my levels were dropping and agreed too monitor my levels and said that i would be having my b12 re tested in December.

[Gambit62 Administrator in reply to Padeficiant12]

Padeficiant12, if you didn't get anywhere then I think it is time that you contacted the PAS directly to see if they can intercede with your GP - or give you some more specific support in writing etc.

you may need to join

pernicious-anaemia-society....

pernicious-anaemia-society....

The telephone lines etc are manned by volunteers so it is possible that you may need to try ringing a few times before you get through

[Padeficiant12 in reply to Gambit62]

Thankyou i will definitely try that.

[Marymary7]

Your vitamin D is too low .

[boru in reply to Marymary7]

I agree with Mary Mary. D3 needs upping. You notice a big difference with optimal d3 - 100+

[boru]

MCV is not seen as a reliable diagnostic tool for diagnosing b12 deficiency anymore, nor is b12 serum....

onlinelibrary.wiley.com/doi...

Read through that document, highlighter in hand and be boss next time you head in to surgery.

[fbirder in reply to boru]

A high MCV is a very good indicator of a B12 or folate deficiency. Low serum B12 is an excellent indicator of a B12 deficiency.

Both are good tools for diagnosing a deficiency.

Neither, alone, are good tools for ruling out a B12 deficiency.

[boru in reply to fbirder]

I’d agree with you if you were right: you couldn’t be more wrong.

British Journal of Haematology Volume 166, Issue 4

Guidelines for the diagnosis and treatment of cobalamin and folate disorders

MCV

“The absence of a raised MCV cannot be used to exclude the need for cobalamin testing because neurological impairement occurs with a normal MCV in 25% of cases (Lindenbaum et al, 1988; Healton et al, 1991)”

“Serum cobalamin

A serum cobalamin assay is currently the standard initial routine diagnostic test. It quantitates both the ‘inactive’ forms (transcobalamin I‐ and transcobalamin III‐ bound, now referred to as holohaptocorrin) and the ‘active’ form (transcobalamin II‐bound, now referred to as holotranscobalamin) of cobalamin in serum. It is widely available, low cost, automated method based on intrinsic factor binding of cobalamin and immune‐chemiluminescence based assays. However, it lacks the specificity and sensitivity required of a robust diagnostic test (see Appendix ).”

[ukbd in reply to boru]

“The absence of a raised MCV cannot be used to exclude the need for cobalamin...". In other words, if there is a raised MCV, this is a reliable indicator of a B12 deficiency. Which is precisely what fbirder said above!

And, similarly, a very low serum B12 is also a reliable indicator of a deficiency. But, as you were eluding to above, the absence of either a high MCV or a low serum B12 does not rule out the possibility of a B12 deficiency.

(In short: both tests are not reliable methods for ruling out a deficiency, but they are reliable diagnostic tests for showing a deficiency).

[boru in reply to ukbd]

There is no 'gold standard test' to establish a functional B12 deficit. No haematological abnormalities need to be present with a symptomatic B12 deficiency. Anemia with increased MCV, the classic diagnostic tool, is in many cases not present.

[ukbd in reply to boru]

Indeed - and I know far too well from recent personal experience.

The presence of either still remain a reliable indicator of a deficiency. However, their absence should not be used alone to rule out a deficiency, particularly in the case of highly symptomatic individuals.

(And I've just noted the discrepancy between fbirder 's original comment in this thread - "For most of these tests the normal range really does fit most of the population, with only a few outliers" - and your British Journal of Haematology extract above.)

[fbirder in reply to ukbd]

And I've just noted the discrepancy between fbirder's original comment in this thread - "For most of these tests the normal range really does fit most of the population, with only a few outliers" - and your British Journal of Haematology extract above.)

Have you tried looking up the meaning of the word 'Most'?

The BJH reference is talking about one test (the serum cobalamin test). If you hadn't indulged in selective quoting you'd have seen that the next sentence I wrote started "It's not like the serum B12 test..."

Explain to me - What's the discrepancy.

[Polaris in reply to fbirder]

I hardly think your use of language is exemplary, e.g. (WTF) ! Nor is your constant pedantry and arrogant rudeness helpful to long suffering members of the forum seeking empathy and answers.

[ukbd in reply to fbirder]

I appreciate your efforts on this forum fbirder and believed I fully understood your second response above - hence my first supportive comment. I'm also not one to pick petty online arguments, particularly not on a wonderful forum such as this and in a thread in which someone is seeking important health-related advice.

I'm also not claiming to be an expert. However, having re-read the thread before my second comment, I realised that it was your "with only a few outliers" that may have mislead (which qualified your use of "most"). I may be wrong, but I believe most would not understand 25% as only a few outliers, but would have instead taken your comment as "if you don't have a high MCV, you don't have a b12 deficiency." That's certainly how I understood it.

[fbirder in reply to boru]

WTF?

I said "Neither, alone, are good tools for ruling out a B12 deficiency."

Which you think couldn't be more wrong.

And you back up your comment with "The absence of a raised MCV cannot be used to exclude the need for cobalamin testing because neurological impairement occurs with a normal MCV in 25% of cases "

Now it's quite obvious to me that both statements are saying the exact same thing. One of us obviously doesn't understand the English language.

[boru in reply to fbirder]

Bottom line Padeficiant12 has made a compelling case that he is deficienct and suffering: “The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status because there is no ‘gold standard’ test to define deficiency”

Comments such as, “ Nope, nothing looks high there. The MCV is the one that might be affected y low B12 and it's totally normal.“ are totally unhelpful to anyone trying to get their b12 injections reinstated , and, lacks understanding of the science, literature and practice. And that is why most people are here : fighting against charlatan attitudes to the science.

Instead of yelling from your tree top that you’re right, try helping someone with up-to-date science rather than perpetuate their suffering through a failure to understand the situation.

[Padeficiant12 in reply to boru]

I will be honest and say i didnt really understand what people were saying, i thought that some of my bloods look on the high end of normal, all i hear from doctors is all is normal and fine yet my b12 is dropping all the time

[boru in reply to Padeficiant12]

For sure, it’s hard to understand especially whilst suffering. I’d push for a gastroenterologist appointment to get to the bottom of your absorption and retention problem. GPs are not qualified to get to the bottom of specialist problems like this. Tell them you’re scared out of your mind, it’s effecting your daily life and want to speak to an expert. And secondly I’d insist in receiving your injections until at minimum you have your appointment. With the drastic drop of your b12 it would seem your loading dose period was not thorough enough. Some people require every other day injections for months before their deficiency is corrected (NICE guidelines available online). As for h pylori and garlic curing your b12 problem I’d refer that question to gastro expert. It’s not going to hurt. B12 is not a loner by the way, has lots of friends that need to keep her company - bcomplex especially folate (and It may be wise to stick to methylfolate as good few people have problems with folic acid), vitamin a,c,d3,e;minerals: copper &zinc (they must be in ratio), iron (with your hemo so high, it doesn’t look to be a problem).

Just be persistent with your practice and come with documents pointing out you know your stuff.

It’s frustrating, A lot of folks don’t want to suffer anymore and end up ordering b12 from abroad and self inject to avoid further harm, such is the problem.

[Padeficiant12 in reply to boru]

Thankyou for your sound advice and kind words, i do feel i am going out of my mind, it’s literally all i think about every day, im a mess, so forgetful, i feel my eye sight is suffering , i have just booked an eye test, im so tired all the time to the point i feel like i have the flu where my hole body hurts, such a terrible way to live x

[boru in reply to Padeficiant12]

Going to direct message you an email address of someone who helped us immensely at the beginning of our tortuous road.

[Padeficiant12]

I have had a test for H pylori, i await the results, next for me too do, do i complain to the health commissioner, i have already complained to my practice manager, one of my questions is, if i have H pylori, and i get it treated, will that sort my b12 deficiency? Will it be cured if the H pylori has caused it ? Or shall i go on without waiting for results to complain and request my b12 injections are reinstated? Many thanks

[boru in reply to Padeficiant12]

Daily Spoonful of Uncooked Fresh Crushed and chopped garlic washed down with non-acidic juice or water has been found as a great natural way to combat hpylori

[Padeficiant12 in reply to boru]

Thankyou, if i have positive h pylori and its treated would this cure my b12 deficiency?