mActive b12 test nice guidelines - Pernicious Anaemi...

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mActive b12 test nice guidelines

ninja1 profile image
10 Replies

I had some Lola blood tests 37 tests. 26 normal 11 abnormal as follows

Haemocrit 0.526 L/L 0350-0470 Above normal

Mchc 279 g/L 300-350 Below normal

Mch 24.8pg 27.0 - 33.0 Below normal

Red blood cells 5.92x10 12/L 380-5.80. Above normal

Red dis width 16.2% 11.5-14.4 Above normal

Globulin 42 g/L 19-35 Above normal

Hb1ac 44 mol/mol Above normal Non diabetic 20-42 pre dia 42-48

Tsh 0.27-4.20 5.1 Above normal (so slightly out as t4 and t3 normal my comment)

Total protein 86 g/L 60-80 Above normal

Active b12 33 Pmol/L Below normal

Serum folate 7.93 nmol/L 8.83 - 60.8 Below normal

so doc said they are fine just take a b12 tablet I pointed out the new guidelines as directed by your good selves thank you he checked them out and then said just buy some high g

Dose b12 tablets and he would prescribe 5mg folic acid acid on prescription for 3 months I said what about the other red blood cells that are out of range he said they are fine your not anemic and just a bit prediabetic

I feel so rubbish I can barely function as when I’ve checked back it’s been like this for over a year c@n anyone advise the way forward and what ugmof tablets I need please

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FlipperTD profile image
FlipperTD

Scientist, not medic. I'm with your GP on this one. You're not anaemic; your Hb is 14.7 and you're not macrocytic; your MCV is 88.8 so in the first case, it's probably sensible to listen to the GP and see how things progress on tablets for a while.

I see that Lola does provide a phlebotomy service, which is good, but could there have been a delay between blood collection and analysis? This is something that is often overlooked.

It's worth being aware that if we measure enough 'stuff' we are very likely to find some things that are outside the reference range. Reference ranges are 95% ranges, so 5% [1 in 20] 'normals' may lie outside the range.

Good luck!

ninja1 profile image
ninja1 in reply toFlipperTD

I got them done at Medichecks as well active within a couple of daysb12 and folate below range. Active b12 been very low for more than acyear but doc said active didn’t mean anything and it was serum that mattered until I pointed out the new guidelines I have been having stomach issues since January this year which is unusual for me so he starting b12 tablets and folic acid 5mg for 3 months after he read the new guidelines.

ninja1 profile image
ninja1 in reply toninja1

I also got the bloods done a couple of days previous at Medichecks whe I saw how low thing were I decided on a full blood drawer with Lola to double check

Colour
FlipperTD profile image
FlipperTD in reply toninja1

Doctor's got it wrong. It's a case of 'I don't understand so it doesn't matter.'

There are others on here who can advise whether you need loading, but I suspect that once you start you're alerady loading, and if you're doing it yourself you can sort it!

Good luck.

ninja1 profile image
ninja1 in reply toFlipperTD

I’m only starting tablets today not injections I was only considering injections as a way forward I feel I’m not absorbing as I eat plenty of folate and that’s low also stomach issues are unusual

ninja1 profile image
ninja1

if I were to start injecting would I need a loading dose gosh I’m so confused my numb feet are annoying can anyone advise me please

Sleepybunny profile image
Sleepybunny

Hi,

I've left a lot of info here, might be best to read a bit every day over a week.

Some links may have details that could be upsetting so might be worth having a supportive friend read through them with you.

Apologies if I've overloaded you and if I repeat anything you've already read.

Did you have any iron tests at the same time eg ferritin?

Link about iron tests

labtestsonline.org.uk/tests...

Low iron can lead to smaller than normal red blood cells - microcytosis

Low B12 (and low folate) can lead to larger than normal red blood cells - macrocytosis

I'm just wondering if you might have low iron masking the effects of low B12 (and/or low folate) on size of red blood cells.

A person with both iron deficiency and B12 (and/or folate) deficiency might have both large and small red blood cells in their blood. As a result the average size of red blood cells on Full Blood Count might appear to be normal.

Mch 24.8pg 27.0 - 33.0 Below normal

Low MCH can be associated with iron deficiency.

Link about Full Blood Count (FBC)

labtestsonline.org.uk/tests...

Link about Macrocytosis

patient.info/allergies-bloo...

Has your GP considered ordering a blood film?

labtestsonline.org.uk/tests...

This would show if there are both larger than normal (macrocytic) and smaller than normal (microcytic )red blood cells in blood.

I don't know if blood films (also known as blood smears) are available privately in UK.

Red dis width 16.2% 11.5-14.4 Above normal

Your red blood cell distribution width is above normal .

This suggests the possibility of iron/b12/folate deficiency...maybe a mixture of all three.

"Dose b12 tablets and he would prescribe 5mg folic acid acid on prescription for 3 months"

What strength B12 tablets have you been advised to get?

I suggest you check with your local pharmacist that you have the right strength of B12 when you pick up your folate.

In people with both B12 and folate deficiency, B12 treatment should be started first.

There may be a risk of neurological damage if a folate deficiency is treated without treating a co-existing B12 deficiency adequately. Your GP or perhaps the pharmacist may be able to tell you more about this.

"and then said just buy some high g Dose b12 tablets "

If you have low B12 from absorption problems, I would expect you to be given B12 injections.

I'd also expect you to be given B12 injections if neuro symptoms are present even if the cause of B12 issues is dietary.

"I’m so confused my numb feet"

Confusion and numbness would usually be considered as neurological.

Do you have other neuro symptoms eg tingling, pins and needles, tremors, limb jerks, electric shock sensations, burning sensations, insect crawling sensations, muscle twiches, eyelid flickering, migraine, difficulty getting the right word out, clumsiness, dropping things, bumping into things, balance problems, memory problems, poor spatial awareness etc?

See lists below for other neuro symptoms. Does your GP have a list of all your symptoms?

Symptoms lists

I used PAS list below and added extra symptoms to bottom.

pernicious-anaemia-society....

b12info.com/signs-and-sympt...

theb12society.com/signs-and...

Next list is from US website

b12awareness.org/cobalamin-...

Next list is from Dutch website

b12-institute.nl/en/symptom...

Vital to get prompt treatment. Delayed or inadequate treatment increases the risk of developing permanent neuro damage. In severe cases the spinal cord may be affected.

Have you considered putting your concerns into a short letter to GP?

The link below has letter templates to base own letters on.

b12info.com/writing-to-your...

Point 1 is about being under treated for B12 deficiency with neuro symptoms present.

He may not act on a letter but at least it would be a record that you raised concerns. Keep a copy as can be useful in case there is a need for a formal complaint in future.

Blog post about being symptomatic for B12 deficiency with normal range serum (total) B12

b12info.com/your-serum-b12-...

It's possible to leave comments under the blog post.

I suffered for years trying to get treatment for B12 deficiency but in the end had to start treating myself. I do not have a PA diagnosis, the cause of my B12 deficiency has never been found but oral tablets did very little for me.

More about Oral B12 treatment

There are moves across the UK to put more people with B12 deficiency onto oral b12.

I suspect it's a cost cutting measure. B12 ampoules for injection are cheap but nurses' time to give them isn't.

There are some forum members who manage their condition with high dose oral B12.

I feel there is too much emphasis on oral B12 treatment in new NICE guideline.

PAS article about NICE B12 deficiency guideline

pernicious-anaemia-society....

Blog post from 2020 about a UK area with treatment algorithm that seems to put most patients onto oral B12. Comments can be left under the article.

b12info.com/gloucestershire...

This next article is from a Dutch b12 website

Caution note about the use of oral B12 supplements

b12-institute.nl/caution-no...

If you can face reading more, search for "Cochrane review B12" which should show a research article that compared oral treatment with B12 injections.

"I pointed out the new guidelines"

Might also be worth searching for these documents.

"NICE CKS (Clinical Knowledge Summary) Anaemia - B12 and Folate deficiency"

Some guidance in above document differs from that in new NICE B12 deficiency guideline.

"BSH Cobalamin and Folate guidelines"

Published in 2014

Find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland. If you can't find them online then best bet is probably to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.

These local guidelines may differ from NICE documents.

I'm not medically trained.

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

I left some detailed replies in the thread below with other useful info.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

ninja1 profile image
ninja1 in reply toSleepybunny

Thank you for your detailed reply much appreciated. I have been deficient for a couple of years but no doc would act on my active b12 and folate blaming hypothyroidism on any level that was below normal and also repeatedly saying serum b12test was the only one they could act on and it was just in range so all was well. Things got really worse when my stomach started playing up severe constipation and gut pain which was also blamed on constipation but the past few months I hzve been almost bedridden but when I took my recent bloods to doctor and told him the nice guidelines changed in march where active b12 did matter he read something and said he wasn’t aware they had changed so he would prescribe 5mg folic acid for 3 months and for me to purchase a high b12 tablet as I needed to take that as well because if I just take the folic it could mask the low be 12 but he just said high dose so I’m non the wiser. The previous doc did a intrinsic factor it was negative 1.0 my ferritin is ok 50ish but it has been dropping all year it used to be 128 but has really dropped a lot since January I’m not sure what is a high dose tablet he muttered 500 or more I only weigh 42kg lost weight over past year had full body scan to rule out anything sinister

Sleepybunny profile image
Sleepybunny

Hi again,

If you search online for "BNF Hydroxocobalamin" and "BNF Folic acid" that should take you to a page that explains the usual treatment patterns that UK GPs use for B12 and Folate deficiency.

Treatment patterns can also be found in NICE CKS Anaemia - B12 and Folate deficiency" and "BSH Cobalamin and Folate guidelines".

Low dose cyanocobalamin tablets are sometimes recommended for dietary deficiency 50mcg but I would expect a GP to put someone with severe B12 deficiency symptoms on B12 injections even if the cause is dietary.

"The previous doc did a intrinsic factor it was negative 1.0"

About half of people with PA get a negative result on IFA test.

Read the Background Information section of the "NICE CKS Anaemia - B12 and Folate deficiency" document for a more detailed explanation if you have the time and energy.

BSH Cobalamin and Folate guidelines discusses Antibody Negative PA.

"my ferritin is ok 50ish but it has been dropping all year it used to be 128 but has really dropped a lot since January"

If you write a letter to GP, might be worth pointing out that your ferritin has been dropping fast since Jan.

These links are aimed at doctors and may have medical details that could be upsetting.

You could search for this document

"NICE CKS Anaemia - Iron deficiency"

Non Anaemic Iron Deficiency

patient.info/doctor/non-ana...

Try to find your ICBs/Health Boards local iron deficiency/anaemia guidelines.

Not what you're looking for?

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