Hi , I have hypothyroidism and I’ve been told that B12 levels need supplementing . Medichecks test says active B12 is low at 62 - range 25.1-165 . A GP test says serum B12 is normal at 316 range 120-625 . Please can you advise ? I do have burning feet, exhaustion, aching legs, mouth ulcers and tinnitus despite optimal thyroid .
I was going to use solgars liquid b12 2000ug is this the best thing to do ? Thanks
Was your folate and iron and ferritin snd vit d also checked? Good you have a baseline for current active abd serum b12.
Numbers are 'in range perhausxan idea to get your intrinsic factor antybidy tested .
Picks uk 50 % of those with PA .
Usually better before b12 treatment started
If positive yiu will need b12 injections for life.
If fokate is low treat b12 first.
What does your doctor say about your symptoms?
Folate iron and ferritin all tested and good . Thinking I may be we just b12 deficient rather than PA hopefully but how can you tell if PA?
Will the doctor do the intrinsic factor or not do you think ?
Doctor thinks my symptoms are stress related and peri menopause.
I was told the same . Beware of that !!
both active and serum b12 are inconclusive as far as B12 deficinecy goes. Active B12 is generally 1/5 of serum B12 and your results are spot on in this range.BCSH standards have a very good discussions of the limits of various tests associated with B12 deficiency - including the problems with interpreting B12 status using measures of levels in blood and the importance of evaluating clinical symptoms not just looking at the numbers.
These can be found here
onlinelibrary.wiley.com/doi...
Generally serum B12/active B12 are more useful in identifying an absorption problem if you see significant drops in levels over time rather than just looking at a single point test. Have you had a previous serum B12 test that showed serum B12 was significantly higher (ie >20% higher (because 20% is the accuracy of the test) - that would be good evidence of an absorption problem.
There are also some potential clarifying tests looking at secondary measures of B12 status - MMA and homocysteine - metabolites that will build up if cells don't have enough B12 to recycle them - but as both can be raised by other factors they need to be done in a context that rules out other factors. They are more complex tests and can require attendance at a hospital.
IFAB is the test for PA as a specific cause of B12 deficiency. IFAB isn't a very sensitive test gives false negaties about 50% of the time - which means a negative is a long way from rulling out PA as the cause of a B12 deficiency - in terms of statistics, Nackapan , this is a little bit different from saying that the test picks up 50% of those with PA.
Hypothyroidism, if, for example, accompanied by slow gut transit can also be an absorption problem in its own right so trying supplementation might work but as a strategy without a formal diagnosis it can also make getting a formal diagnosis of a B12 absorption problem - whatever the problem - even more difficult.
Suggest that you look at the BCSH standards above and share them with your GP, highlighting key facts pertinent to your case and ask for follow up with relevant specialists if necessary. Whilst stress could be an explanation of symptoms, B12 deficiency also affects resilience and ability to cope with stress.
@Gambit62 Thankyou . No not had a higher previous serum test but then no one has questioned B12 before till now only the thyroid was checked and iron .
I’m hoping that with supplementing b12 will help . If it dies then doesn’t that mean I just haven’t absorbed well due to thyroid ?
but I see what you mean about getting the diagnosis will be even harder at the GP but it also sounds like getting those tests done will be incredibly difficult and a slow process it could take months before then they turn around and say I don’t need B12 . I’ve heard that GPS don’t like giving the injections . It must cost them too much money and in the mean time if I supplement that could resolve my issues.
The trouble is some of those issues are related to menopause aswell so they cross over and also thyroid .
I woukd get the intrinsic antybidy test done privately or at your Gp.Best before any supplements taken.
I regret not knowing g this and mine eas never done ag tge right time.
J know a negative test does not rule oyf PA but will never know mow ax nkt stopping frequent Innevtukns needed.
Yes many things overlap but you've git thus far with bloods so I woujd continue. Then supplement
@Nackapan Thankyou I’ve taken 1000mcg a day for three days now will that make a difference?
I’ll try to get my GP to test intrinsic antibody . Medichecks want £200 something for it . Do you know any other private tests if my GP won’t test ?
@Gambit62 can you clarify what I need to ask my GP to test please? Sorry if I seem confused I’m finding it hard to understand all this stuff !
So on average half of those with PA do not have antibodies at the time if the IFA test .
Not sure how else to phrase it ?
So 50:50 chance antibodies there on the day ?
I didnt know that ,or infact know about the test at the time of my first b12 test .
Wish it had of been done before loading doses.
Just trying to get that point across as Gps don't all do it.
Then do it at a later stage when lots if b12 in your blood and only 'believe it'
If negative it seems .
Heard that too many times now.
I so wish a better test was available with better 'odds' of a diagnosis
But it's the only one at present abd dies get 'some' a diagnosis.
@Nackapan sorry I’m confused so to clarify the intrinsic test only picks up 50% of the time .
So how else can you confirm if PA if that test is inconclusive?
Also if the antibodies are there then it shows PA ?
If they are above the range I mean ?
I’ve read that 1000mcg of b12 orally is sufficient for PA so I could just take that anyway without all the tests don’t you think ?
Nackapan , Blackpanther46 . If the IFAB test gives a negative result there is a high probability that the result is a false negative because the test isn't very sensitive. The exact probability varies between 40% and 60%. This basically means that a negative result is inconclusive and certainly doesn't rule out PA.On the other hand the test rarely gives a false positive so a positive is a really good evidence that you do have PA.
It isn't that people with PA don't have antibodies when the test is done, just that the test method picks up metabolites other than the antibodies so if you have a result below a certain threshold there is no way of knowing if the test has picked up IFAB or other similarly sized molecules, meaning that the test is inconclusive.
People can have the test done many times before they actually get a positive result.
It just isn't as simple as saying the test picks up 50% of those with PA because that is confusing the probability of a correct positive, false positive, correct negative and a false negative.
Nackapan, the best you can say is that a negative is a long way from proving that a person doesn't have PA but a positive is good evidence that they do.
Okay so if my result says negative then I could still have PA ?
Yes, a negative dose not rule out PA - to the extent that the BCSH standards refer to 'IFAB-negative PA'
Ok so the only way really is the MMA and homocysteine ones that are more reliable but GP doesn’t test that am I right in thinking ?
They aren't more reliable - they are additional tests that look at other metabolites and try to clarify where serum B12/active B12 isn't giving a clear result.To be honest I would discuss with your GP making the following points
a) There aren't any definitive test for B12 deficiency
b) BCSH guidelines emphasis the importants of evaluating symptoms, and responding quickly if there are neurological symptoms. Protocol would be to trial injections to see if those work.
c) there isn't a definitive test for PA as the cause of B12 deficiency and its probably easier to rule out other B12 absorption problems. Most absorption problems require treatment with injections for life
BCSH guidelines can be found are here
onlinelibrary.wiley.com/doi...
There is a huge overlap with other conditions in terms of symptoms which does make it very difficult when there isn't a definitive test that can be done.
Tackle it from wanting to resolve your symptoms and looking at B12 being one of the options.
Sorry I can't give you anything definitive because there isn't anything definitive.
Thanks @Gambit62 well I’ve gone this far now and may as well have the rest at the docs . If it’s negative then that could be false and if positive then there’s no denying it. I think going forwards from there I’ll supplement with b12 sublingually and see if my symptoms improve from that . Probably the best course of action as getting further tests is difficult by the sounds of it and expensive if done privately. Do you think that sounds sensible plan ? Thanks
High dose oral works using passive absorption - but this seems to vary quite significantly from individual to individual, so there is no guarantee.
Hello again right I’ve booked a blood test at GP for pernicious anaemia I just want to make sure I list exactly what I want tested before I go in . I’ll stop b12 after three days of 1000mcg for a week . Is that long enough? @Nackapan and @Gambit62
unfortunately supplementation can affect the results for a long time - with IFAB it depends on the exact test methodology - can be as little as 24 hours but for some it can be as long as a couple of weeks.
Oh god so maybe I should put off blood test for another week then so 2 weeks after supplementing?
The chances are it will be newer kit so up to you
Ok thanks if it’s the newer kit is a week sufficient?
yes- down to 24-48 hours.
Hi @Gambit62 my mums just told me grandad had injections of b12 for pernicious anaemia! Funny how you only find out these things when I told her I was being tested for it. Is it often hereditary?
it can run in families and may have a genetic component but nobody is sure exactly what that might be and no specific genes have been identified. There are many conditions where genes can make people more susceptible but seem to require other circumstances for this to manifest - if there are multiple genes involved (which is likely given that B12 is involved in so many cellular processes) and multiple external triggers it makes it very difficult to really see what is going on. Science may get there someday but right now we still seem to be a long way off.Interesting though it is - genetics of B12 is off-topic for the forum so that's all I'm going to say on the subject.
After disastrous neglect of my close relative's B12 deficiency, gene testing confirmed to our family that we almost certainly have difficulty in absorbing, not only B12 but also other vital nutrients, and three of us are now self treating with B12 injections, knowing that there is no reliable test. We are also hypothyroid (40% of those with PA also have this autoimmune condition).
Speaking personally, B12 resolved the neurological symptoms that had insidiously crept up over the years and I have reclaimed my memory, sanity and almost certainly prevented crippling disability in my later years.
I have to confess to being puzzled as to why genetics is off topic the forum🤔 ? In these days of mostly test based medicine and reluctance of GPs to believe patients' symptoms, this is perhaps the only way to go, even if we still have to diagnose and self treat?
Good luck getting answers Blackpanther46
...................
More about symptoms and how to approach your doctor:
b12deficiency.info/signs-an...
BMJ research document summary (full document behind a paywall now ☹️), from which you'll also see that there is no reliable test and deficiency should be diagnosed by symptoms if in any doubt:
pernicious-anaemia-society....
How do you self treat with B12 injections? I was going to try sublingually taking it to see if it makes a difference to symptoms.
When you've exhausted all test options or hope of diagnosis : a few people find they do absorb sublinguals or nasal drops, but injections are still advised for neurological symptoms, which you appear to have.
I find Lipolife liposomal B12 (available Bodykind & Amazon) has helped between injections but have not relied on this alone.
Syringes, needles, sterile wipes and Sharps box from Medisave:medisave.co.uk/instantsearc...
BD Plastipak 2ml syringes
TErumo Agani 21G x 1 1/2 " green needles to draw the solution up into the syringe
BD Microlance 23g x 1.25 "Blue needles for the IM injection
or
BD Microlance 26G x 3/8" Brown needles for sub cut
..........
Best to practice on an orange and have first injection with medical support if possible, as there could be side effects, though v. rare.
Warm up ampoule of B12 to body temperature and Inject slowly into outer thigh muscle (lots of utube demonstrations and more help here if needed)
PS B12 is light sensitive and I also keep mine in the fridge.
Thanks for your help how did you get your gene testing done ? I can’t believe now I’ve got this to worry/tho k about ive only just managed to get my thyroid sorted after years of being untreated but still feel terrible .
Your symptoms and borderline testing, together with Hypothyroidism, do appear to indicate B12 deficiency but it depends how cooperative your surgery is and whether you want to continue trying to get a firm diagnosis? Obviously better if you can. It also helps to have personal support
On the other hand, time is usually of the essence and stress can result in further deterioration, as the UKNEQAS link shows - might be worth writing to GP first as suggested on Tracey Witty's website?
My relative's treatment had already caused the family terrible stress and I decided I couldn't go through this again when the odds seemed stacked against.
It was much easier at that time to obtain B12 from German pharmacies, though I'm sure other members here are able to supply more information about where to buy B12 now (Amazon de ? for hydroxocobalamin B12 and Medisave for needles, syringes etc) as I'm still using up previous stock and have been away from the forum for a while. There could be tiny glimmer of hope in change of rules re. medical supplies between the UK and EU but it's not v. clear at the moment......
I'll look up the other information you asked about (there are often offers) and PM.
In meantime, try not to stress or overdo work/exercise and, look at diet if you have gut issues, which often go with being hypothyroid. I find avoiding gluten and taking Kefir and sauerkraut helps with digestive issues.
I'd also recommend, 'A Mind of your Own', by Dr Kelly Brogan (hypothyroid after her first pregnancy) the only conventionally trained medic/psychiatrist, I've heard of who connects B12 deficiency to schizophrenia/psychiatric symptoms, and now treats her patients holistically with diet and nutrients.
Thankyou for your help Polaris I’ll try those things you e suggested with diet
Good. Glad you getting it done.
I woukd think just stop your supplement for as long as you can before the test.
We've been told on here that if the latest equipment used in the laboratory a huge gap is not now needed.
If I remember rightly it's about 10 yesrs old now so shoujx be currently used.
The NHS will have j assume more up to date equipment than some private companies fir this test .
As you are not on b12 injections my opinion is you have nothing to lose by having it.
I wish i had.
I knew nothing about it .
Once on injections some G.ps use a negative result to wrongly to stop injections.
Sone stop them any way??
It's what we are all up against.
Lack of training .
Different protocol s and different translations of protocols ?
That's why it's as clear as mud at times ans we have to wade through .
Hope that's helpful.
Thers plenty to read uo about it on the PAS information.
I’ll stop for 2 weeks then test . Hoping it will show something to work with and not just negative as it will be waste of time won’t it coming off the b12 .
You won't know that until tested.
Yes worth doing.
And if positive you will need injections of b12 .
And have a PA diagnosis.
If negative a trial of b12 tablets first then retest b12 levels whilst monitoring symtoms.
I Hope you get answers soon.
It is very difficult when symptoms overlap.
Just don't put it down to the ore menopause or menopause. I made thst mistake.
Knee something wrong though.
Even when i did go to the doctors they said stress and the menopause. I even went back after a nasty fall.
I think even a 3rd time? After 7 yesrs of not going. Still dismissed like so many women are especially .
(My husband pointed that out )
No bloods taken.
In hindsight unbelievable also odd I didn't ask!! Couldn't think straight.
I wasn't tested until i collapsed and then Couldn't walk .
Only then 3 weeks later!
So you right to pursue everything you can .
Nothing a waste of time. You need yo be tsjrn seriously and listened to.
It's a case of elimination if no clear cause.
Also pushing the G.p.for explanations bloods abd referrals.
Ironically you need to be well enough to do that.
Take care
Hi @ Nackapan . Sorry that it was that bad for you before you got diagnosed.
What did your tests show after you collapsed?
Just found out that my grandfather had injections for pernicious anaemia my mum just told me .
Just found a very low b12 level 106pg/LNothing ekes found to date.
Mu mum snd daughter akso need b12 injections.
Not dietary.
Hi @Nackapan and @Gambit62 I got my results from pernicious anaemia test at docs and all normal as negative also my full blood count was all normal in range . They didn’t test my B12 though which was what I wanted and when I phoned back to ask for it to be done the GP has told me I don’t need it doing as my full blood count was normal and pernicious anaemia test was negative . Also my last serum B12 test was normal last summer . My recent active B12 test by medichecks was low though ! So should I push for the B12 to be tested still ? If he won’t agree which I don’t think he will I have seen that Medichecks do a B12 test so would that be worth me doing or not ? Thanks
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