I had high levels of B12 - 1772 - and my GP told me it was dangerous. I take oral B12 so he advised me to stop taking it. With a month I was a mess and ended up almost at square one. I now realise my GP knows nothing about patients with PA. We need high levels to keep symptoms at bay. Stopping B12 is simply not an option for us.
Thanks for response, I realised as well that the units of measurements aren't always the same from different labs. My results from GP are in ng/L the ones from BlueHorizon are pmol/L. Might as well be ancient Greek 😅
B12 levels will be high when you inject, no need to stop because of that. Guidelines say not to test B12 after you've started injections because it's known they will be high. Go by symptoms.
I see that you got some potentially conflicting advice on the TUK group. I can't remember if you had neuropathy and/or IF antibodies, but if so then injections are the way to go (regardless of the cause of B12D). If not, then perhaps tablets will be fine in the long term. Only trial & error and tracking symptoms can say for sure.
There does appear to be ongoing inflammation but i can't see the reason from these labs.
How much B6 are you on? Not good to take in high doses or on its own unless you are proven deficient. It can build up and become toxic. A good B complex with less than 10mg b6 is a better approach.
Vits A & E can also build up and easily go over range so it would be good to get tested at some point.
Thanks for responding, yes I posted on TUK for the Thyroid specific, it's all good though , realise not everyone can be an expert on everything and to be fair I hadn't mentioned neuro symptoms. Sometimes I forget to post stuff because in my head I assume certain facts are obvious ( I know therefore it must be simple/obvious) think it's partly the ADHD/ASD, not trying to be a pain, 😜 can do that without any effort at all. Funds are quite scarce at the moment so trying to be careful, do you think I might be able to get GP to test IF antibodies? I realised as well the units of measurement on B12 from GP are different to BlueHorizon units. Is there a way to convert that doesn't need a PHD in Quantum Mechanics? The B6 and Vit A are in a Selenium supplement diddy amounts I think, B6 1.6mg, Vit A 750 ug, ? Thanks again
Yes I get that, no worries And it's always good to get multiple opinions!
Yes GP should be able to order IF antibodies. Convincing them is another matter, and it's not a very sensitive test in that up to half the time they can come back falsely negative - meaning you have the antibodies but the test isn't able to detect them.
Yeah they don't like people knowing more than them, think some get quite antsy and defensive, sometimes I don't help that, can be a real pain in the arse with no effort at all 😊. I have in past got some printed records from them, sparse is the best way to describe them, in UK MY GP app is quite temperamental but can get some info, still not comprehensive but they seem to have made it quite difficult to get the full facts
Definitely don’t stop injecting. Pointless measuring vitamin B12 after treatment as other have said, and British Haematology society. IF factor is only 50 % accurate.
Serum testing are not accurate indicators of essential micronutrients. Hypomagnesium as an example
With that many supplements, it’s advisable to work with a dietician. We know that b12 needs folate (or folinic) ferritin and vitamin D.
But iron needs vitamin C,
Vitamin D3 needs vitamin K2 but also needs calcium (calcium citrate is the recommend). Linked to the parathyroid gland.
Magnesium (threonate is the recommend as it crosses the blood brain barrier) works in conjunction with vitamin B1.
It goes on and on. This is practically biochemistry, which is why dieticians are so important. They recommend dosages as well.
Why do you have so many deficiencies is the question ? H.pylori ? SIBO ? Coeliac disease ? Autoimmune gastritis. So, worth asking doc for endoscopy, breath test, stool test maybe.
Like jade_s said vitamin A and E, (as are D and K) are fat soluble so will build up unless something (bacteria, archaea or fungi) are ‘stealing’ them.
really not sure what has happened with my body, been complaining of fatigue, sleep , waking up and just start planning when I can sneak in a nap, usually response was you have a big family and you work of course your tired. always had to fight to get bloods checked usually without success. It might have been building up for years I guess. Then 10 maybe 12 years ago started complaining of aching feet, legs to the point where took anywhere between 30 minutes to an hour of a morning to unstiffen , is that a word. Told well your overweight, lose some and it will stop. Was about stone maybe 2 heavier than ideal. Not long after , problems with hands, , tingling, that horrible pain like when someone has given you a dead leg or arm. painful but numb. Maybe you need to exercise more and lose weight , weight yeah but I was quite active, worked my own allotment plot on my own. Stopped running, only ever did few miles but it got too painful. My thyroid was removed 1995, never had any investigations other than TSH and T4 . Not vegan, was mostly veggie for first 20 years of life. Eat reasonably healthy diet, last few years not had a great appetite most of time, bit of a carb addict. Don't eat huge amount red meat, like chicken and fish. Really fussy about processed meat, don't eat burgers, don't really eat sausage, no nuggets , reclaimed, reformed stuff, no. Will eat a burger if it is homemade , if I make it. Not allergic to anything far as I know. Like veggies, salads, fish chicken cheese , baked spud. Got sacked from NHS 2015. 2016/ 17 , did an Access course on-line, passed with nearly all distinctions , did GCSE Maths passed, started Uni 2017. Everything going well. Referred for assessment (ADHD +ASD) in 2017. 2018, ran into trouble with a mentor, bullied, ended up depressed and anxious. Still having pain, legs hands, px venlafaxine, then ADHD meds. Things have continued to unravel since, told now type 2 diabetic, venlafaxine interferes with serum glucose/insulin resistance. Told I am hypertensive, and that my cholesterol is raised neither have ever been a problem. Only found out about deficiencies after spending last couple years fighting for blood tests. Last 18 months started losing sensation in my hands, losing words, began to wonder if it was early onset dementia. Had nerve conduction tests , diagnosed carpal tunnel syndrome, had operations on both hands, December and February. Really glad to have found you all, really thought I was going mad. One thought crossed my mind,, Mum, is 91 this year, quite demented now, but she has always said she had always had " blood problems, anaemia, all her life" has always intermittently had treatment . Eventually diagnosed with essential thrombocytopenia , probably not relevant. If you got this far have a gold star
Being undertreated for hypothyroid can definitely cause low vitamims/minerals. You've been through a lot xx Sorry to hear about your mum. Autoimmune diseases like Pernicious anemia & thyroid problems tend to run in families. Do you know if she ever got B12 shots?
It seems that thrombocytopenia does commonly occur in PA , here is an article from 1979. There are other case studies but this was the most accessible at the moment.
You have been through so much. Having a thyroidectomy has massive implications. Like Jade said the link between low vitamin and minerals or as I like to call them by their proper name - essential micronutrients and thyroid dysfunction.
Sorry to hear about Mum.
Recently, I had a lovely conversation with a retired nurse. She said well, you are what you eat. I disagreed and offered you are what you absorb.
It’s a big unique jigsaw for all of us. It takes time and patience piecing it all together. But we are all here for one another x
I apologise for rambling on a bit, but I felt I ought to chuck my two penn'orth in here.
Call me old-fashioned, but pathology test results without appropriate reference ranges are 'of limited value' [being polite].
Testing performed by different laboratories likewise; they all participate in external quality assurance [or they should do!] but even that doesn't make results interchangeable between providers either. To complicate it further, the varying reporting of mass concentration and molar concentration makes it even more complicated.
Getting tests performed is relatively easy, especially if you're able to access a service via £££, but getting a result is only part of it; getting interpretation, and treatment if necessary, is another matter entirely.
It's often reported that 'IF antibodies' are unreliable, and can come back 'wrong'. This is getting deep into terminological inexactitudes!
The tests used for IFAb are reliable, but they are only positive in around 50% of cases of PA. [If they weren't reliable then they wouldn't be used. We're quite busy enough.]
The other 50% of PA cases who don't have demonstrable IFAbs are an issue but that doesn't mean there's anything wrong with the test. It just doesn't give us what we hoped for; the patient can have PA without demonstrable IFAbs.
A definitive diagnosis of PA isn't dependent on the presence of IFAb, but if positive, it's a great help. It's a clinical diagnosis, and that needs an experienced doctor with access to competent and specialised laboratory services, and between them they can interpret all the results, signs and symptoms.
Thank you for your very interesting reply FlipperTD
Many of us have frequently read or been told that I.F. tests are only 40/50% reliable, with Martyn Hooper having had three IF tests before eventually testing positive…….
My surgery offered an IF test two years ago but I refused, partly because of this and partly because I knew by then that this would have opened the door to more gaslighting from my GP, adding to already unbearable stress at the time.
Are you saying that it’s not worth repeating an I.F. test, that it depends upon the laboratory, or maybe other factors ? Have wondered too, is this why BMJ research document mentions only the MMA test as a possibly more reliable test ?
IFAb tests detect around 50% of patients with PA. They might not detect them immediately, but [now, in the days of Covid testing] we hear all about antibodies coming and going. As IFAb are Auto-antibodies, they're unlikely to come and go as much. If they come they'll probably stay, and they may well increase in their strength. [Well, that was my experience when testing for them anyway.] In my laboratory, in general we decided which ones should be tested based on their low/very low B12 results. [We should have sought informed consent to perform the test but we didn't at the time.] We got some primary referrals from doctors, we got some referrals from other hospitals too, but we did quite a few of our own requests on the basis that if we didn't, they might never get done. I'm actually impressed that you were offered the test by your GP, to be honest.
It's certainly worth repeating in many cases; if the result was negative, then [as in Martin's case] he eventually got a positive, and clinched it. There are numerous different methods and manufacturers in the market, and it could be that some have a lower threshold for positivity than others.
The pond is further muddied by the MMA test. This detects a functional deficiency of B12 because MMA is a metabolite that wouldn't be there if there was sufficient B12 present. So, it might be helpful in some circumstances, but that's for the requesting doctor to advise.
*In my experience, Serum B12 is a reliable, repeatable and precise test. [If you keep sampling the same blood sample you keep getting the same result.]
Serum B12 assay kits from different manufacturers run on different equipment, and the ranges of results differ. It's difficult enough to run three analysers from the same manufacturer, side by side, for B12 and get the same results across all three. This might appear to contradict what I said *earlier, but we're talking about sub-clinical significance. The analysers are very, very precise.
Intrinsic Factor antibodies are found in about half of all patients with PA.
PA is an auto-immune condition, and auto-antibodies abound in auto-immunity.
Auto-immune conditions 'go round in gangs.' If you have one, you're more likely to have another. [which is a really cheery thought, isn't it?]😀 I'm not sure if I've helped.
The problem with the serum B12 test for so many of us (especially those with Hashimoto’s TD), is that we’ve already been supplementing with B12 tablets for a while, have high levels of B12 without absorption, and worsening neurological symptoms.
I was offered I.F. test only after hospitalisation/rehydration treatment (two doctors suspecting Addison’s Disease from symptoms) and me sending the surgery Dr J. Chandy’s book, ‘ Vitamin B12 Deficiency in Clinical Practice’, - in which Dr Chandy, interestingly, quotes Addison’s discovery, “that the adrenal glands were damaged in all the 11 cases of pernicious anaemia on which autopsies were performed.”
Thank you so much FTD for clarifying - has helped a lot 🤗
As if we didn't know, this is a lot more complicated than we think and it's more complicated than that. And a bit more so!
I fully accept that some folks can supplement B12 orally, and get it into their bloodstream, either with, or without IF. I have difficulty in working out how that B12 doesn't then go ahead and reverse their B12 deficiency symptoms [thinking in terms of blood only. The neurology is way beyond me.]
Thomas Addison is another of those 'greats' who left so much knowledge behind when he died aged 67, and we could have done with him lasting a good while longer.
So, how the oral B12 gets absorbed, but doesn't fix the problem, is a bit of work for another day.
Call me old-fashioned, but pathology test results without appropriate reference ranges are 'of limited value' [being polite].
It appals me that patients who request test results often get given bare numbers - no hint of a reference interval, and often no units.
That flies in the face of the Data Protection Act which requires information to be supplied in a form which can be interpreted and would be meaningful to the subject.
You're absolutely right. Regrettably I'm not convinced that the folks giving out the results actually have a deep enough understanding of the principles either. We put an incredible amount of detail, documentation and sophistication into the production of the magic numbers. But it's horses and water, I'm afraid.
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And it's always good to get multiple opinions! 
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