I've been back to the docs again today (my 2nd home at the mo!!) where I saw a more sympathetic GP. On filling her in on my previous visits she told me that as well as my ferritin being low last March (when I was pregnant and started on iron tablets) my b12 was low 10 years ago when they tested it. It was 140 odd then and 172 on 11 October this year.
Is it possible that it has been low for the last 10 years or does it fluctuate? And if it does, roughly by how much? I'm rather annoyed that nothing was done then and nothing was mentioned to me at that time either
She wants to wait another few days for my parietal cell antibody test to come back. And she supports the other GPs suggestion of starting on oral B12 and having my bloods redone in a couple of weeks to see if I am absorbing it. Intrinsic factor was negative. VitD was 80 something so looks like that is fine.
Do you think I should be asking for holoTC & urine MMA before I start any treatment? I couldn't get prescription today for B12 tablets as pharmacy has to order them in so gives me a little time to think about it and ask your expert opinions.
Thanks as ever.
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Eoperez
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Vitamin B12 is sourced naturally by eating animal products such as red meats, fish, seafood, eggs, poultry and dairy produce, milk, cheese etc plus some breakfast cereals are fortified with it.
With a good healthy diet as above as long as we don't have an absorption problem we only need about 1.5mcg a day of vitamin B12 to "top up" our stores in the liver which can "hold" some for years.
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.
We source Folate by eating leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas, beans etc.
What is your diet like?
You say your Intrinsic factor was negative.
Sadly he Intrinsic Factor Antibody test (IFA) is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
According to the N.I.C.E guidelines on the treatment for B12 deficiency the "Anti-parietal cell antibody is found in 80% of people with pernicious anaemia, but also in 10% of people without it. However, it has a low specificity of about 50%, which is much lower than that of anti-intrinsic factor antibody [Andres et al, 2004]. If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia, but its presence is not diagnostic as it can occur in other conditions (for example atrophic gastritis) and older people (16% of normal women over 60 years of age) [Carmel, 1992; Hoffbrand et al, 2006]. As a result, it is no longer recommended as a diagnostic test for pernicious anaemia [Devalia et al, 2014]."
I guess you now need to wait for the results of your test before taking the next step.
Do you have any neurological symptoms?
I am not a medically trained person and certainly no expert but I've had P.A. for 46 years and I'm still "clivealive" and over 75.
Hi, my diet is varied and eat plenty of b12 rich foods which I keep trying to tell my GP.
I have some neurological symptoms but GP overlooking them
Ferritin and folate are on the low side of normal.
Just wondered what would make my b12 rise minimally over 10 years or wonder of it ever got high and has fallen again, guess I'll never know!
I think I'll pick prescription up when ready but just wait a few more days and see if parietal cells show anything that will further prompt the GP. The one I saw this time was more sympathetic and think alarm bells started ringing a bit with her when she noticed low b12 from 10 years ago.
What does a low specifity of about 50% mean? My brain really isn't working tonight!!
I know I should probably be having b12 shots but struggling trying to convince Dr that there's something wrong.... even though it's there in black and white, but according to them it's grey!!
Hi I found out that my B12 was around 145 5 years ago (way too low) and this year it was recorded at 104 so had dropped to an even lower level. It should have been addressed 5 years ago and I should have been getting B12 shots but it was missed by my GP and I think its been down hill for the past 5 years......... it should be between 500-900 so I am told, I don't understand why GP's are not picking up on this very debilitating deficiency. The reason it is so low is because we are not absorbing it and pills will not work either so injections are the only way to go. Good luck!
Me neither. I'm trying to convince gp whether I have PA or not is irrelevant to me, just want my low b12 treating. You'd think I was asking for golden Rocky horse s**t though !
I have discovered GPs are under pressure with B12 prescribing. They are held strictly to account re. prescribing guidelines and their prescribing is thoroughly investigated. If it is seen to deviate from 'the rules' they are in trouble. Although it is supposed to be up to the GP to prescribe B12 as and when necessary according to symptoms, in practice that is absolutely not the case. I think this is why they don't want to get involved in diagnosing and treating B12 deficiency, and prefer to stick to absolute proof of anaemia, after which it would be loading doses and three monthly jabs only, or in some areas, B12 tablets. The available nurse appointments are an important factor as well and these are more and more limited with the ongoing cuts to staffing and services.
A lot of research and work has been carried out and conclusions reached in the field of B12 deficiency/PA, but it is not being applied to GP practices. Of course some individual GPs do try to help as much as they can.
You have said above that your diet includes B12 rich foods which increases the chances that b12 deficiency is due to an absorption problem eg PA (Pernicious Anaemia), Coeliac disease and other possibilities.
I have written a detailed reply on your older thread.
Have you been tested for Coeliac disease?
Links about Coeliac disease
In UK two first line tests are recommended but my experience is that GPs don't always do the total IgA test.
No I haven't been tested for coeliac disease, I will certainly read your links and request those bloods.
My homocysteine hasn't been tested either so defo think I need that done before I start any treatment. That is my understanding too about oral b12 but I can't get that through to the Drs that my diet is rich in B12 foods already
Sometimes intrinsic test comes back negativebut then positive I70 is very low should be up in 500's. You need more tests. Once they're done I would supplement vit d b12 iron and a multi b vit. I have PA and thyroid issues fed up with feeling I'll do i shove it all in now against docs orders but feel much better. You do need to find out root cause before supplementing though.
Why are the Doctors being so strict with giving out B12 injections, a very cheap supplement. It sounds as if you will need injections but if you take tablets you will skew the bloods as they will then look ok! Then they won't jab you. Is it all about the manpower of the nurses time, why are the NHS being so funny about this.
They didn't treat my brother, now he is disabled. Be determined to sort this out!
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