B12 levels dropped over a year.

[bflare]

Hello.

I have just visited my GP regarding pale coloured stools mentioned in a previous post. She was able to give me my recent blood test results which have dropped over a year. I assume this is what is seen in PA? The levels are as follows:

May 2023

Serum vitamin B12 level 476 ng/L

Serum folate level 4.1 ug/L

December 2024

Serum vitamin B12 level 275 ng/L

Serum folate level 1.2 ug/L

Calcium-Bone Profile , Serum Ferritin - Normal

My GP said she will chase up the results of the biopsies i have had but doesn't want to do anything further until there's been a firm diagnosis.

Do the levels drop like this with PA?

[Rexz]

bflare, yes they do drop like that at an advanced stage. Remember PA is an advanced stage of Autoimmune Gastritis (AIG). AIG is a very slow, decades long, process of your immune system attacking and destroying your gastric parietal Cells and Intrinsic Factor culminating in PA and B12 deficiency. Have you been tested for these antibodies?

If you can, get a copy of your biopsy pathology report. It's important to see where the biopsies were taken and what each one's results are.

Rexz

[bflare in reply to Rexz]

Ok thank you. I’m 46 at the moment so this progression will not happen over night? I’m quite frightened to be honest. I suffer from health anxiety so things like this do really knock me for 6! I cannot help but think of the worse.

I’ve not had the results back from the biopsy as of yet but I do know they were taken following the Sydney protocol.

The endoscopy comments were generalised atrophic gastric muscosa mainly at antrum. Generalised Non erosive duodenitis.

[Rexz in reply to bflare]

Good that they used the Sydney Protocol. But many GI docs put all the biopsy samples in one specimen jar to save money... Not on the jar but rather cost of pathologist. I know, it doesn't make sense. It's important to know which of the biopsies came from the upper body or fundus and what those results are. Reason is Autoimmune Gastritis occurs in this region and spars the antrum (lowest part of stomach). Where H-,Pylori caused Gastritis occurs in the antrum and spares the body and fundus. Don't expect your GI doc to know this, to them, not all, they see Gastritis and it's Gastritis not considering the treatment for each is woefully different.

[bflare in reply to Rexz]

Thanks for your reply.

The endoscopy comments were generalised atrophic gastric muscosa mainly at antrum.

Is this condition a death sentence or can it be managed if caught early?

Appreciate your help and once I see the specialised I’ll make sure I mention what I’ve learned on here!

[Rexz in reply to bflare]

In the Antrum would most likely be related to H-Pylori bacterial infection. Have you been tested for H-Pylori? They should have tested your biopsy specimen and will say H-Pylori positive or negative. Then you should have H-Pylori Stool test. If either is positive then they will prescribe antibiotics to eradicate the H-Pylori. Once that is done this type of Gastritis, unlike autoimmune gastritis, can begin to heal.

Rexz

[bflare in reply to Rexz]

The report says CLO negative. Unrease test negative. I’m assuming this is the H-Pylori test?

Where do I go from here? Just wait for the pathology report? I’m concerned with my current B12 levels at 275 ng/L.

I have no symptoms as of yet. The atrophic gastritis was picked up on a endoscopy to check on my Celiac disease.

Can you lead a normal life with either PA or H Pylori gastritis?

[Rexz in reply to bflare]

bflare, yes these CLO and urease negative means H-Pylori infection was not detected. They will also test biopsy for this. The other causes of Gastritis are environmental things like alcohol consumption and smoking... Yes, sounds odd but some amount of smoke does enter the stomach in those that smoke.

275 ng/L seems low for B12. But what is the normal range of the test lab you used? This range varies by lab and method.

Rexz

[bflare in reply to Rexz]

The normal range is 211 ng/L to 911 ng/L.

I did smoke and drink alcoholically for over 20 years but quit both 6 years ago.

Would it be worth getting a private blood test for PA? Medichecks do a Pernicious Anaemia Blood Test? They say it’s a comprehensive blood test includes intrinsic factor antibodies and MMA to help investigate autoimmune gastritis or pernicious anaemia.

[Rexz in reply to bflare]

Well, depends...The only 100% affirmative test for AIG/PA is biopsy pathology of Oxyntic Mucosa showing damage to Parietal Cells. Maybe wait and see what that report says.

What symptoms are you having related to B12 def? Are you vegan? Maybe increase your B12 supplement?

[bflare in reply to Rexz]

Ah ok so the pathology report / biopsy should confirm AIG/PA? The Sydney protocol should confirm?

I’m not vegan however, I only eat chicken mainly. My diet is pretty bland. Rice and veg. Deli ham sandwich for lunch but that’s about it for meat.

I have no symptoms what I can think of. I do get pins and needles in the fingers on my right hand but that’s only when I’m gripping something such as a steering wheel. I’m sure this was said to be carpal tunnel.

[Rexz in reply to bflare]

Yes, pathology can confirm assuming pathologist had been given instructions to check.

I would increase a B12/folate oral supplement. And retest B12 in a few months. Just know I'm not a doctor, so suggest you get copy of pathology and what you've learned here then have a conversation with your doctor/GP.

[bflare in reply to Rexz]

Ok thank you! I really appreciate your advice!

[Rexz]

No worries bflare let's have a B12 toast to the New Year!

[Gambit62 Administrator]

Serum B12 is a difficult test to interpret because the normal range is very large.

This is not because levels vary significantly in an individual - quite the opposite - an individual will have quite constant levels as the body has a good mechanism for regulating levels - releasing stores from the liver into your stomach via bile as they are needed. If you have an absorption problem though this doesn't work and your levels will drop.

The other problem with serum B12 is that it is only accurate to 20% - meaning that you get a variation in levels measured of 20% by remeasuring on the same sample.

However, the drop in your levels is much more than 20% - demonstrating that you do have an absorption problem and that means that although your levels are in the normal range they aren't at the level that you need. Your GP should be treating you based on symptoms which I think you have already mentioned as being quite significant.

Unfortunately lab reports often don't mention how the normal range works in the case of B12 and GPs often fail to understand the significance of substantial drops such as those in your results.

[bflare in reply to Gambit62]

Thanks for your reply. I’m not sure what symptoms low B12 causes. However, the only current symptoms I have regarding GI are paler than usual stools and a gurgling : churning in my stomach. I do occasionally experience pins and needles in the fingers on my right hand however, that’s only when I’m holding the car steering wheel which was put down to carpel tunnel.

[Gambit62 Administrator in reply to bflare]

link to symptoms of pernicious anaemia - which are basically the symptoms of the B12 deficiency it causes.

[Hockey_player]

Besides needing regular B12 injections, as long as the damage has not gone too far (e.g. spinal cord degeneration), there is no reason you cannot have a completely normal life with PA.

[mickeymouse42]

Between May 2023 and December 2024 have you taken any B12 supplements? What dosage have you taken? Did they do an IFAB blood test as well?

[bflare in reply to mickeymouse42]

No supplements and no IFAB test.

[Annamaudebug]

The answer is YES, they drop. But you have a very steep drop for a one year period. A quick check to see if you have intrinsic factor would provide an answer. I live in California, so I know our health care is different. Were it me, I would be taking either liquid B12 or perhaps inhaled and folic acid. Take daily and see if you feel better. Listen to your body.

[mickeymouse42]

It's odd that they didn't do the IFAB test as in most areas it's part of the protocol when you do a B12 and folate test.

Have you considered taking a B12 oral supplement?

I had lowering levels of B12 (the lowest was 201 Ng/L) and was getting symptoms of dizziness and balance issues. I supplemented with the basic Boots B12 (40 mcg) for 6 months, got another B12 test and discovered levels did not increase. I then moved to higher doze (100 mcg) tablets and they raised levels a bit over 6 months. I then switched to 1 mg tablets and my B12 levels shot up to about 500 Ng/L and the symptoms disappeared.

My low levels of B12 were probably down to gastric issues; in my case an infant ileocolonic resection means that I don't absorb certain vitamins (particularly Vitamin D); in recent years I've developed bile acid malabsorption and fatty liver disease which have exacerbated the problems.

Maybe trying 1mg oral tablets for 6 months to see if your levels significantly rise might be worth trying? If the levels don't rise, then there's clearly a problem.

The IFAB isn't particularly reliable but a GP can definitely do it. In your other post about pale stools the serum gastrin test mentioned would be worth getting as low stomach acid (and high gastrin levels) would also point to PA.

[bflare in reply to mickeymouse42]

I’ve decided to order a private PA blood test which includes IFAB just because I know what my GP is like and some NHS doctors so I thought for the price I’d get it and saves having to try and convince them. I’ve also ordered some 1000mcg oral tablets however, I believe I should have the blood test first before taking the supplements? The PA test I have ordered has an active B12 test too.

[mickeymouse42 in reply to bflare]

Doing the blood tests first makes sense because the supplements will distort the levels. Start the tablets after you've done the test and in 6 months time ask your GP for another B12 test. If you don't have PA, a daily 1mg tablet should increase your levels significantly.

[bflare in reply to mickeymouse42]

Ok cheers. My GP gave me 5mg folic acid tablets to take. Should I not take these either until I’ve had the blood test which I’m hoping should be next week? Cheers.

[mickeymouse42 in reply to bflare]

Not sure about folate acid. There's a complicated relationship between folate and B12. Perhaps raise a separate question on this; someone here will know about this

[B12phd]

As your PA progresses, the absorptive layer in your GI tract decreases. There are many "fingers" called villi in the digestive tract. They serve to increase the surface area of the surface lining your digestive tract. As your B12 status drops, the ability to make new cells to replace the cells in you digestive tract lining decreases so the villi get shorter and flatter. The changes in the lining could account for your changes in stools.