Is it possible to have PA on a spectrum?

[Ian232]

Hi, is it possible to have PA on a spectrum, where you get some B12 out of what you eat?

I have to wait another long 2 months clear of supplements before I test again, & I just wondered if it can be a gradual thing to start with?

Thank you.

[Nackapan]

Oh yes it's gradual.Cam take a few yesrs to deplete b12 in Liver stores .

Symptoms subtle

Initially

Tiredness

Weary

Vision problems

Forgetfulness

Can be for many reasons.

Then get worse .

Very gradual .

Some get b12 at this stage to recover.

Some crash and still b12 test not done immediately.

B12 absorbtion issues can be affected by many things so yes some b12 may be absorbed but not enough .

Then if you can't utilise any in liver stores .

Get ill

I think once on injections if its not a dietary problem.

You need b1e injections for life .

Like anything that's having to be replicated your body's function even though not adequate gets overridden.

Like the pancreas stops working completely if diabetic and having insulin.

I remember my husbands Pancreas woujd randomly kick in causing havoc with hypos .

Apparently this happens. Then yoh get better control when dependant on insulin injections only.

With b12 it may be the reason why some have bad periods and then okay for z while.

Bit like a slow puncture .

You can kerp going until completely flat?? Empty

Are you able to go without just for a test?

Surley symptoms dictate ?

Too much emphasis is put on the numbers

[Stiglitz in reply to Nackapan]

Hi guys, I find this conversation really interesting. I have had classic signs of b12 deficiency for some time, I took a sublingual drop which helped marginally for a while but then appeared to become useless after some time. I stopped using the supplements for about 3 weeks before going for the GP last week for a blood test. I had all the classic signs, fatigue,restless legs, brain fog, irritability and general flat affect. Following my blood test last week I took two intramuscular injections of b12 over the course of 5 days and feel much better in terms of fatigue, cognition and even mood. I was sure the blood test would show really low b12 levels, however, it shows really high levels, above the higher end of the range. Can anyone help me understand this. Thanks in advance.

Regards

Stiglitz.

[Nackapan in reply to Stiglitz]

Someone scientific....not me explained that one on b12 injections we can only use the b12 when it overflowing I.e high levels. Perhaos try and locate post ?

None of us know at what high level we csn operate sohave yo keep levels high.

I was given with no explanation instructions from a neurologist to kerp b12 levels very high

[boisland in reply to Stiglitz]

Stiglitz: Serum B12 levels are "not" an efficient method to determine whether someone is B12 deficient (B12D) unless it is low . Serum B12 test measures BOTH Inactive B12 (biologically inert and cannot be used by our cells) & Active B12 (only form that can be taken into our cells) and counts as one reading. Any B12 supplementations, injections, oral etc. taken 4 months prior to testing will falsely elevated the reading. The elevations are due to all this "unconverted" B12 (has not converted to active B12) that floats around your body and elevates serum B12 levels. Hence, don't test B12 after an injection because it is not a true reading...just a high amount of unconverted B12.

[Rexz]

Hi Ian232, great question. The answer would be yes, what Nackapan said. As we understand the progression of PA or actually preceded by Autoimmune Metaplastic Atrophic Gastritis (AMAG) is a decades long process. As antibodies for parietal cells and intrinsic factor begin to slowly destroy both over a lengthy period your ability to absorb B12 is slowly reduced until the end state of PA and Megaloblastic Anemia occurs when most people are diagnosed. It would definitely be good to find out say 10 years prior so that close monitoring of serum B12 levels and injecting could be started prior to any nerve damage occurring.

Rexz

[Ian232]

Hi   Nackapan , &   Stiglitz &   Rexz Thank you so much for your replies! 👍

I have been feeling very unwell & discovered worsening hypothyroidism, so my levothyroxine has been increased. Someone on the Health unlocked thyroid forum advised that I look into B12 deficiency as B12 389ng/L (normal range 197-771)

Out of desperation with how I was feeling & mistake, I took high strength b12 sublingual spray & B complex for about 3-4 weeks. My B12 level increased to 489 & most of my symptoms practically disappeared, but I stopped 2 months back realising I need to test clean of supplements after 4 months, but I think I have messed up after discovering today that my breakfast cereal is FORTIFIED! 🙄

I had an intrinsic factor test which was fine, & plan on having a gastric parietal cell antibodies test soon.

I have been trying to come off of a tiny amount of a psychiatric med called aripiprazole, which I had been on for years, & all these issues must have started say 2 months later.

[Nackapan in reply to Ian232]

I should not worry about testing levels .If you test levels whilst taking b12 at least proof you are absorbing.

Which assume at result was.

I would not stop b12 if you are benefitting.

You are well over reference range anyhow.

Can't see what it would achieve.

[jade_s in reply to Ian232]

I developed severe neurological symptoms in a situation similar to yours - Levels in the 300s, went up with supplementation. IFAB negative. But I was still functionally deficient.

But if symptoms are disappearing on supplements, that's a good sign you're absorbing, but I would have expected your levels to go higher. How much total b12 is in the spray + complex?

Are you vegan or vegetarian? If you eat meat, then the (likely) small amount of fortification in your cereal won't make much difference.

As you may know, IFAB can come back negative about half the time in people who truly have PA.

As you see, B12 deficiency is not always straightforward.

[jade_s in reply to Ian232]

How are folate levels?

[Ian232 in reply to jade_s]

Hi Jade, this was 19 May 2023 6.9 ug/L

Range:2.4 - 17.5 ug/L

Date:19 May 2023 00:00:00

I took the following until June 18th, so not as long as I thought.

• 1200μg B12 oral spray (Better You) since 30th May 2023

• Vitamin B-Complex (Pink Tribe Liposomal) since 7th June 2023 which is 500μg in B12

I am a meat eater too.

I know some people can have very low B12 levels & no symptoms, & I am sure I have read of others being higher levels than mine & deficient, so it knowing what to do for the best really.

One other thing, I am sure I read that sublingual spray gets fast tracked to bloodstream through saliva ducts, is it?

I guess I am just trying to work out if my absorption is impaired, & kind of on the way to becoming PA, perhaps?

[jade_s in reply to Ian232]

I guess I am just trying to work out if my absorption is impaired, & kind of on the way to becoming PA, perhaps?

Hard to say definitely, really. That's a decent amount of B12. I do not know enough about the dynamics of B12 to say if that's a good increase or not, in just 2.5 weeks.

As Rex suggests, HoloTc, Hc, and MMA are useful tests but those too can be distorted by supplements.

Really we can only go by symptoms at some point. I got progressively worse while taking 1000mcg sublingual. My 2 relatives got by for several years on tablets but also had progressively worsening symptoms, so finally switched to injections and it was like night and day. All of us initially had negative IFAB. All of our levels went up on tablets. My MMA and Hc were normal. In 7 years, I've had 4 negative IFAB results, as has one of my relatives. The other one has had 2 negative and 1 positive. So we went by symptoms. But yes it's like you say - it's as if our absorption got worse over time.

I think it will be impossible for any of us to tell you the best route to take. Whatever you do, keep a log of symptoms. Various options I see: (1) Continue taking supplements, and if they resolve everything, then it's not (yet) an absorption issue. (2) If supplements don't fully resolve symptoms, even if all tests are negative, then you could try injections - B12 is not harmful. (3) If you decide to stop for 4 months, be aware that even that might not be enough to get levels low enough - and considering your baseline level was already in the 300s, I wouldn't expect a dramatic drop. However at that point you could test Active B12, Hc, and MMA, and that might be informative. (4) You can repeat IFAB, and GPCAB is also good to get - you can get these at any time without having to stop supplements.

Is there any B12D / PA in the family or older relatives getting "red shots" or being told to eat lots of liver ?

You might also request an endoscopy - if you have autoimmune gastritis (or H pylori), then those too can indicate PA or a deficiency.

For reference, here are two symptoms lists. b12deficiency.info/signs-an... and pernicious-anaemia-society....

One other thing, I am sure I read that sublingual spray gets fast tracked to bloodstream through saliva ducts, is it?

Yes it's possible you've read that, some websites will say all sorts of things, but B12 doesn't get absorbed into the bloodstream orally. It is too large of a molecule and requires special transporters, and gets absorbed only via the gut. However there is a binding protein in saliva - haptocorrin, that binds to B12 and prevents its degradation as it travels through the digestive system, so sublinguals and sprays will take advantage of that.

Folate levels aren't bad but not great, so the B complex will help, if you continue it. Do periodically recheck it.

[Rexz in reply to Ian232]

Ian232, it doesn't appear you have a B12 absorption issue. It is interesting though that when you supplement orally that your serum B12 increases and your symptoms resolve. Two things, 1) is that the normal ranges are I'll say "out-of-whack" meaning your individual "low normal" may be higher than the range you stated. 2) is that maybe functional B12 deficiency? Where Immune-sequestered B12 has trouble entering the cells.

You may want to have the following tested. These are all simple blood tests.

Active B12 - different test than regular serum total B12

holotranscobalamin,

homocysteine

methylmalonic acid (MMA)

I confess I'm no expert on functional B12 deficiency so other forum members, Nackapan, jade_s, technoid, sleepybunny, may want to chime in.

Rexz

[Ian232 in reply to Rexz]

Thank you Rexz, I have wondered if it some kind of rebound effect from Aripiprazole withdrawal even, as it can interfere with B12, I believe.

I think you can see from this chart how it dipped upon taking it, & rose again when tapering off, & then how supplements sent my levels up a bit. I just think a level is giving a false normal.

B12 level

[Ian232]

Hi all, I just wanted to say thank you so much for all of your help, & jade_s in particular for your last very informative reply, & explaining what options I could take. 👍

Don't worry, I will have a good long think before making any rash decisions & will try & contact my doctor again soon & have a chat.

It has been interesting learning how PA works.

Thanks again.

🙂

[jade_s in reply to Ian232]

You're welcome! Please also take a look at this pinned post, lots of useful info on PA/B12D healthunlocked.com/pasoc/po...