I've been looking into possible pernacious anemia, following the advice of a member on my blood test results...my levels have varied a lot over the past few years and despite increasing my dose of Thorne basic B, my overall levels have not increased.
(See screenshot attached - the lowest point is 70.4 pmol/L and highest 136 pmol/L)
Various symptoms could also point to PA, but they are also quite general symptoms that may not be related...
Having spoken to my GP about testing, he's suggested I leave off my vitamin B supplements for 2 months and then do a blood test...
Where I'm torn is whether it's worth coming off them and messing things up for a test that may not even show anything up... knowing how long it takes to build levels up again etc!!
I'm trying to clarify if this will include an IFAb test, as I'm doubtful that my blood levels will have come down enough by then for an active b12 test to flag anything up.
And yes I know that an antibody test may not even be conclusive...
I've wondered about going private too, but would I be told to come off my supplements for testing too? Or is there another way round this?
Not sure I totally understand the whole b12 thing, so I'm probably barking up the wrong tree anyway...but any advice or experiences would be gratefully received! 🤗
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Molly161018
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Thanks seasidesusie, yes four months without any vit b supplements is what's worrying me, just a bit unclear as to whether theres other options...I think all my medichecks tests are active b12 as far as I can see, but I had a Serum vitamin B12 atthe GP in 2020 as follows:
Active B12 and Serum (Total B12) are different tests. The Total B12 tests all B12 which is active and inactive and doesn't separate the results. The Active B12 only tests the active part and some say this is the better test as it's the active B12 that is available to the cells.
537 ng/L (Normal range 200 - 900)
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Neither your Total B12 nor your Active B12 results suggest deficiency, it's when Active B12 is less than 70 it's suggested to test for that according to Viapath at St Thomas' Hospital:
Hi molly i don't know if you saw my other reply to you on the PAS post? You didn't comment or like so maybe you missed it. healthunlocked.com/pasoc/po...
I listed various options you could try.
The only reliable test now is the antibodies test.
I'm also of the mind that we should trust ourselves and fully explore the 'tree' before dismissing it, so if you think it's b12 then it's worth exploring. Just my opinion
Ok so at the lowest point on my graph it was 70.4 (about a year ago) and this is when taking supplements... would this not warrant further testing? Or do you go by an average?
It was 93.9 before I started supplementing. I started taking the b complex more to help folate levels, although I was of the understanding that 100+ is optimal for b12...
On this forum we tend to say aim for 100 plus as part of the suggestions for optimal levels of all key nutrients, the PA forum might say something different as they concentrate purely on B12.
Have all your Active B12 tests been done with the same company and same testing lab, ie Medichecks with County Pathology processing the test?
With a level of 93.9 for Active B12 there would be no suggestion of you needing to supplement with a B12 supplement. Have you been doing this or just a B Complex?
I can see you started off with Igennus Super B, did you stick with this brand or did you change it?
Your post on the forum in October 2019 shows your levels as
I responded to that post with the following comment:
Folate - Serum - 2.93 ug/L (> 3.89)
As you can see this is below range so technically folate deficiency. You should speak to your GP, he may prescribe folic acid. Come back and let us know what he says.
Vitamin B12 - Active 93.9 pmol/L (> 37.5)
When Active B12 is below 70 this suggests testing for B12 deficiency. Yours level is OK.
You started taking a B Complex and in March 2020 your results were
In July 2020 you did a Total B12 test which showed
B12 537 ng/L (200 - 900)
Folate 7.0 ug/L (2- 17)
I commented on the B12 saying it could be better but did not look back at previous posts so didn't realise that you'd been doing Active B12 tests and they were fine.
In October 2020 you had a decent Active B12 of
Vitamin B12 - Active 97.600 pmol/L (Range: > 37.5)
In February 2021 you asked about stopping B12 before a test yet you had no need to be on B12 supplements with that level, a B Complex should have maintained it.
In August 2021 you had the following results
Folate - 4.2 ug/L (Range: > 2.9)
Vitamin B12 - 114 pmol/L (Range: 25.1 - 165)
and I think this test was carried out by INUVI for Medichecks and the previous ones were carried out by County Pathology. The B12 is again good and the folate on the low side although it is a different range.
In December 2021 you had the following results
Folate - 16.8 ug/L (Range > 2.9) - This has increased from 4.2 three months ago when I added 1 X Jarrow methyl folate 1000mg as recommended, should I continue this? Is there an upper level, or what symptoms should I be keeping an eye on here?
Vitamin B12 - 125 pmol/L (Range: 25.1 - 165) - this has increased slightly from 114 three months ago. No change to supplements here, still taking 1 X Thorne Basic B complex.
So your folate had improved greatly and B12 still very good.
In May 2022 it looks as though Medichecks sent this test to County Pathology:
and for some reason your folate and B12 have dropped. What had changed from when you had the excellent results 5 months earlier? I did ask if you'd stopped taking your B Complex and you replied
I haven't stopped taking b complex, although admittedly I'm not so good at remembering now with a little one to keep up with...I'll try taking two for a bit and hopefully will get my levels up again...
So that could very well have been the problem, to maintain your levels it would seem you need to be taking your supplement regularly.
In September 2022 you had the following results
Folate - Serum 8.32 ug/L (Range: > 3.89)
Vitamin B12 - Active 104.0 pmol/L (Range: 37.5 - 150)
so I imagine that you'd started to take your B Complex regularly again and levels improved.
January 2023 levels were
Folate - Serum 13.77 ug/L (> 3.89)
Vitamin B12 - Active 136.0 pmol/L (37.5 - 150)
so levels have improved again.
March 2023 showed
Folate - Serum 14.87 ug/L (Range: > 3.89). I have been taking a separate 400mcg folate supplement (alongside 2 x Thorne Basic B) and this has brought my folate levels up. What should I be aiming for as optimal here? Should I keep taking the extra folate? Can you take too much?
Vitamin B12 - Active 82.2 pmol/L (Range: 37.5 - 150) - this has dropped. Any idea why this could be? I take 2 X Thorne Basic B Complex per day.
So a big drop in B12 level showing in just 2 months but that's puzzling as our B12 store should be fine for a couple of years I understand.
Are there any times when you've been taking a B12 supplement, if so when and have you stopped/started it and if so when.
I don't think you have had an absorption issue during the time of these tests otherwise I doubt you'd have had a starting level of 93.9 and a level of 136 in January of this year. Also, if your March level of 82.2 is accurate it's still not showing any sign of deficiency.
Thanks again seasidesusie...your reply is so comprehensive my mind is blown!
In answer to your questions...
Yes the lab has varied by the looks. My last test (Jun 23) was done by Inuvi and the one before (Mar 23) by County Pathology. May, Aug & Dec 22 were all County Pathology. Also had one in Dec 21 done by The Dr's Laboratory by the looks. I can't see back any further on medichecks website, and have had a new phone so don't have the downloads...Do you think a different lab would make a difference?
No I haven't ever taken a separate b12 supplement, just Thorne Basic B complex. 1 capsule to start with (containing 400mcg b12) , and increased to 2 in early 2022.
I think I have always taken Thorne. From memory I was going to get Igennus but couldn't get hold of it at the time, so went with Thorne which was another recommendation.
Yes I remember your comments about the drop in May 22. I have had a reminder set since then, so have been taking regularly since then.
Yes the drop in Mar 23 puzzled me too...and another members comments about the variations and possible b12 deficiency is what has got me thinking about this.
Anyway... going by your comments and other responses on the PA forum, I'm thinking perhaps I am barking up the wrong tree...
I think I'm going to try the Cortisol tree next...
Thanks again for your helpful and very in depth advice x
Do you think a different lab would make a difference?
It's possible. It definitely does with ferritin (lots of posts about this on the forum a couple of years ago and Medichecks were involved) so it's a possibility that results might vary with B12. One way round this is to request Medichecks to only use your preferred lab and hope they will oblige.
No I haven't ever taken a separate b12 supplement
I'm surprised, especially as some of your levels have risen quite considerably and you wouldn't expect that from just a B Complex.
that made me wonder if you were taking a B12 supplement.
I think I'm going to try the Cortisol tree next...
OK, so if you are going to test then make sure it tests Cortisol plus DHEA. Medichecks cortisol test isn't particularly good and only tests Cortisol, the better tests are Regenerus and Genova Diagnostics. I've used Regenerus because they send results direct to you whereas Genova send them to ThyroidUK and you have to fill in a results request before they're sent on to you.
Sorry yes my old post re b12 was a bit misleading... I think I was more querying that it said 2 weeks to not take it for...and I was thinking this would apply to the b complex I was taking...
Thanks for the advice re cortisol testing - I was wondering what the best test was.
Hi Molly and thanks for your post. May I follow you please because I am in a similar position? I am very reluctant to stop taking B12 for long enough for it not to interfere with test results because I have so many symptoms of deficiency. GP says I'm not deficient and doesn't think the fact that I had been supplementing needs taking into consideration and was not willing to run blood tests before I started supplementing, so, like you, I don't know what to do and am sure I don't understand the whole B12 thing well enough especially intrinsic factor.
Hi thyr01d you can also ask questions on the pernicious anemia forum here on HU healthunlocked.com/pasoc
Intrinsic factor (IF) transports B12 from the intestines to the bloodstream. Pernicious anemia (PA) is an autoimmune disease in which your body creates antibodies against IF, making you unable to absorb B12.
The IF antibody test will come back negative (saying you don't have PA) in up to 50% of the time in people that truly do have PA, so it is a tricky test. If it is positive, you can be sure you have PA and therefore need lifelong B12 injections.
Usually tablets cannot be absorbed but in some cases people will have high serum b12 on tablets yet still develop symptoms ( b12deficiency.info/signs-an... ) - this is functional b12 deficiency. And you will again need injections.
Thank-you Jade, I really appreciate your answer, it is really informative and helpful as is the signpost to the pernicious anaemia forum. The GP I had about 20 years ago said tests had shown there was an autoimmune condition in my stomach (not her words!) that needed keeping an eye on. She retired and subsequent GPs have said they don't know what she was talking about. I will post on the other site but meanwhile, do you think this autoimmune condition sounds like PA? I do not know what to do since my GP has just written off any possibility of a B12 problem and the surgery refused to test B12 before I began supplementing. (Now I realise the answer would have been to have a private blood test but I just didn't think of it). Thanks again
Interesting. I wonder if it was gastric parietal cell antibodies. Those attack the stomach cells that make both stomach acid & intrinsic factor. It is related to / cause of PA but many doctors don't consider it diagnostic for PA because GPC antibodies can also be found in people with hypothyroidism and other autoimmune diseases. However personally i wouldn't just dismiss it like that. Worth getting both antibodies tested.
Do you think you can get a hold of those old results?
We can give you suggestions on the PA forum even if doctors dismiss you I'd post some links now but not add home.
Hi Jade and more thanks for being so kind and helpful. Now I can at least ask my doctor about those gastric parietal cell antibodies and PA. I did post on the PA forum right after replying to you so will see if there are other suggestions, although I think you have put me on the right track 🙂🙏
Yes of course! Not sure how much help I'll be as the responses I've been getting on this forum and the PA one suggest that I probably haven't got PA...so I think I'll go and find another tree to bark up 😄 Hopefully I'll get the right one at some point!
Thank you Molly - though of course now I can't remember how to follow! Will look again some time. If you'd like company my dog would love to join you in barking up trees!!!😀
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