I decided to join the society after my doctor initially said she felt I had pernicious anaemia but following my Intrinsic Factor Antibody test coming back Ok, she said it couldn't be PA.
Test results that seem to be slightly off are:
Serum Folate - 3.1 ug/L
Serum Vitamin B12 - 144 ng/L
MCV - 101.8 fL
MCHC - 311 g/L
Combined Vitamin D2 + D3 - 16.1 nmol/L
Also been suffering from lhermitte's sign, pins and needles, very bad brain fogs and lack of coordination. Also been extremely exhausted all of the time which isn't great at 21!
I was given 6 loading shots of B12 after I kept nagging and it began to help symptoms by the final one but now a week after having stopped them, my symptoms are just as bad as before.
Just wondering if anyone has any advice and if I should continue to pursue to possibility of it being PA?
Thanks & sorry for the long post!
Lauren
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LaurenDH123
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Where are you based - in UK protocol for treatment if you have neurological symptoms is loading shots 3xweekly until symptoms stop improving with a review at 3 weeks, then maintenance shots ever 8 weeks but some people find this isn't enough even though it is more 'generous' than the regime without loading shots.
Would be helpful to have the ranges as well on the results.
The fact that your symptoms improved would suggest that B12 was involved.
Your folate levels were low and possible deficient as well - are you supplementing B12 as the chances are that if you weren't deficient before treatment started you are now and this will stop you being able to use the B12 you have in your blood now.
PA is one specific absorption problem that will lead to a B12 deficiency - others include coeliacs, crohn's, h pylori infection, and various drug interactions, including PPIs, as well as lowered stomach acidity. The test for PA is prone to false negatives 40-60% of time depending on the assay method so a negative is a long way from proving that you don't have PA.
H pylori is treatable so you wouldn't need injections for life. Other causes generally aren't treatable, so maintenance shots would be for life.
Different causes have different consequences so may be worth investigating on that basis.
I am based in the UK - the doctors were reluctant to give me the 6 loading doses nevermind more eventhough I did point out the recommendations when neurological symptoms are involved.
Ranges on results are:
Folate 3.10 - 20
B12 187 - 883
MCV 79 - 99
MCHC 316 - 365
Vitamin D2 +3 Combined 50 - 220
After the intrinsic factor test came back fine, my doctor told me that my blood tests actually weren't too bad so not to worry and that we didn't need to do anything which made me begin to think that maybe I am just worrying over nothing!
You were borderline for folate deficiency - so you are probably folate deficient now which won't be helping recovery - 400mcg available at supermarket should be sufficient to cover that.
Your B12 is really low - so would be surprised if you weren't deficient - serum test isn't brilliant as a guide so is a 5% chance that you are still okay with a result below the bottom of the range but it's getting unlikely and you are highly symptomatic.
IFA coming back negative is a long way from showing that you don't have PA - it returns false negatives 40-60% of the time dependent on the assay method.
If your GP is expecting to see signs of macrocytosis in your blood work then you need to draw their attention to the fact that 25% of people with B12 deficiency present without Macrocytosis - it is a symptom not a defining characteristic of B12 deficiency.
You are also Vit D deficient
Would have been useful to have full blood count results as well as likelihood is that your iron is also low - and that would lead to microcytic anaemia - smaller red blood cells so just looking at the size of blood cells is going to give a confused picture. if both iron and folate/B12 deficiency are present then RDW (Redcell distribution width) is likely to be raised.
Unless your diet is really poor in relation to folate (green leafy veg) and B12 (meat/fish/dairy/egg) then you have an absorption problem. The treatment for a B12 deficiency caused by absorption problems is loading shots. Maintenance shots will depend on whether the problem is reversible - which basically boils down to is it h pylori or tapeworm - otherwise its maintenance shots for life whether it is PA, coeliacs, crohns, low stomach acidity ...
Potential drug interactions that can lead to B12 deficiency include oral pill, PPIs, metformin, NSAIDs. Given your age and the fact that B12 deficiency tends to take years or even decades to develop unlikely that any of these has caused problems though they may have accelerated them.
BCSH guidelines particularly emphasis the need to address neurological problems to ensure that these do not become permanent.
Suggest you put this in writing to your GP with a copy to practice manager and link to the BCSH guidelines (British Council for Standards in Haematology)
After my initial blood test, she told me that my red blood cells were enlarged but hasn't mentioned it since. I've had 4 blood tests in the last couple of months and felt like I was getting no further forward which doesn't help when you're feeling so low already.
They have ruled out it being dietary and another point is that three members of my immediate family have vitiligo and 2 have PA which I have heard can increase the likelihood of me having it.
I will definitely be writing a letter and thank you for all the advice on what I need to point out to my GP.
Far from being an expert myself, having just had a low result myself (118) - but already found some excellent info here, so happy to try to give something back.
At least in my area, 144 would be considered below the threshold, albeit only just (145 is the cutoff).
The MCV would be high (>100).
Those two together would from what I understand point towards PA.
What is clear from reading the guidelines is that the IF test is wrong 40-60% of the time (low sensitivity is the official jargon), so a negative IF test does NOT rule out PA in any way shape or form.
Seems to be a given that GPs don't bother to read the very clear guidelines from NICE and others regarding this, as I am gradually finding out, but seemingly many others already know to their cost.
The guidelines state quite clearly that you should treat the symptoms, mainly BECAUSE the tests are not exact.
If you have B12 deficiency, then the treatment is to provide B12, regardless of any other investigation for the underlying cause (there are other causes than PA)
Other people should be able to advise further on next steps, but I think it's clear that you have every right to continue to pursue this and demand treatment for what are obvious and life-changing symptoms.
I am waiting for the first of 6 loading doses next Friday and have been told that 3 monthly injections are the norm, even when the guidelines make clear that it should be at least every 2 months when there are neurological symptoms.
Some useful links that I've found, that maybe you should provide to your GP - they are 'official', so hard for them them deride as nonsense.
I am in the process of writing a letter to my doctor to try to get my thoughts across in a clearer way - I found this page which seems like it has some useful info on...
It's just such a shame that so many people have to face a constant battle just to get recognition of something being wrong and then also have a fight to get the right treatment!
I hope it all goes well for you and that you begin to see some improvement
Since you have Lhermitte sign I would suggest that you find a good neurologist and have them check you for MS. Lhermitte sign is most commonly found in people with MS. Don't be frightened not all cases of MS are severe. I've had it for about 24 years and lead pretty normal life.
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