Hi
I have PA and strongly suspect that my sister also has it. Her vit b12 blood test came back within range, lab ref range in our area between 400-900 (if my memory serves me well).
If she asked her doctor for anitbody tests, would this be a way of identifying PA, or does not everybody with PA have antibodies.
I am aware of two - Parietal cell antibodies and instrinsic factor antibodies.
Thanks MC
Hi there:
I knew for some time that my blood type was B RH Positive, but never took it into account. A month ago I researched about it (Livestrong Foundation website has material on diets for each type, but many more I read from offered material about the antigens carried by those who are typed as RH positive, The intrinsic factor antibody is one that came up several times in different medical papers. The test has to measure the Active B 12 as opposed the B12 in the pool (blood serum). After my answer to Pandora22 from earlier today I searched again and found company that offers the test kit to labs in Canada. Will pursue this more. After the test is obtained and interpreted I plan to post additional information. The test I talked about is the new holocobalamin test and only measures active B12 levels. Antibodies must be looked at through the lenses of a person's blood type. Imagine that between our questions and answers we raised issues for which answers might be already in medical papers we have not searched!
The Net offers benefits indeed, it was only in 2000 that I took my first course on using the Net for work related searches.
Best wishes to you and your sister as you reach for better health.
mashby
Further to my answer above, those not in the UK who are interested in taking the B12 test can go to ibl-international.com for more information. The site for IBL indicates they are also makers of antibody/antigens tests, and they ship to labs overseas. Those not in the UK can search which labs in their countries order IBL test kits.
The problem here is that the test for Intrinsic Factor antibodies (IFab) is fallible as only 60% of patients with PA will have the IFabs. People with gastric atrophy or atrophic gastritis, both the same thing, which can be caused by age/presence of Helicobacter Pylori, will not be producing enough hydrochloric acid and therefore lack IF which is produced in the stomach so they would test negative for IFab yet would have anaemia which would certainly be pernicious, i.e., if allowed to go on uncorrected would result in an eventual extreme B12 deficiency. This deficiency should be treated usually by injections like classic Pernicious Anaemia, a term formerly reserved for PA caused by IFab.
Parietal cell antibodies (PCab) test is supposed to show if there are antibodies destroying parietal cells which produce the IF. Complications arise here as the test interpretation depends on the age at which tested.
Only between about 10-30% of the serum B12 which is the current NH test is the Active B12, the rest is inactive and not usable by the body. Also the lower levels of the NHS reference ranges are deemed by most authorities in the field to be far too low (Professors D Smith and H
Refsum.) as neurological symptoms, in some people, can occur at levels of 300ng/L. I rather think that the lower level you quote for your sister are either misremembered or not NHS. The PA Society recently announce that the Active 12 test will be rolled out "soon" to be available without a doctor's referral at each Nuffield hospital in the country. At the moment the Active B12 test cna be had at the St Thomas hospital in London but a doctor's referral is necessary plus one has to attend this hospital in person.
Type Active B12 Test in the search box top right to find this announcement.
You probably already know of the Pernicious Anaemia site?
pernicious-anaemia-society.org
Has a lot of valuable info and a helpline accessible by members, as does thIs one:
Please also be aware that it is your absolute right to be ask for and be given copies of blood tests plus any correspondence between your doctor and specialists should you want them.
Antibody tests are notoriously unreliable for PA..I think Pa is more diagnosed by a variety of tests, blood tests, Active B12 test, MMA, homocysteine, gastric secretion, neurological tests, possibly MRI,etc
This paper gives some more details and suggestions, see:
ncbi.nlm.nih.gov/pmc/articl...
This is a very informative read:
emedicine.medscape.com/arti...
Will give a good list of other reasons why some one could be B12 def etc.
Not every one with PA has only a certain blood type..there is a poll on the PAS website, see:
pernicious-anaemia-society....
Kind regards,
Marre.
Three years ago I was told I had pernicious aneamia and was given B12 injections I am 72 years old
I was also told I would probably be having these for life. One year ago I was told my B12 was ok and I did not need any more injections but all the symptons I had 3 years ago have come back and I feel terrible I had another B12 blood test but was told it was fine and I do not need any more injections how can this happen when I feel so ill and my GP wont help me.
Haggis40, this is a dire situation, those with Pernicious Anaemia must have their injections for life as you were told. Your diagnosis of PA must be on your file and your GP should be acting on that diagnosis other wise he is guilty of medical negligence.
I suggest that you write to this GP and require that he should put in writing to you the details of your PA diagnosis and the reason your B12 injections have been stopped, then send a copy of his letter to the chief exec.of your Primary Care Trust with a covering letter requiring confirmation that stopping of B12 injections in the case of one with diagnosed PA is the Trust's policy. That should definitely get some action.
Also it would be advantageous to join the Pernicious Anaemia Society, here's the link again:
pernicious-anaemia-society.org
and then you could enlist the help and advice they can offer via the Helpline open to members, or from the Chairman of the PA society himself, Martyn Hooper.
Martyn has written in his blogs twice about just such situations and has assisted in the restoration of injections.. See:
and
I seem to remember that in Wales GPs were stopping these vital B12 injections in some cases and the Welsh Health Secretary wrote to Welsh GPs essentially saying they were to cease the stopping of these B12 injections. Cannot find the details but must have read it on the PA site.
You say that the B12 levels were "fine" but these must be some doctor's words, not yours, never accept such words, make sure you get copies of all your blood tests.
It is absolutely wrong from your doctor to stop injections just like that! My treatment was stopped as well based on my B12 scores but all my symptoms came back really fast and worst than before. I rushed back to my MD and begged her to begin injections again. She agreed but I really had to work hard for it. It boggles my mind that I needed to find all my B12 info here on the site and that my doctor hardly knew anything about B12 defeciency except for the normal range and what meds to give me! It's just plain crazy. I can't wait for are doctors on this planet to know about the real facts from people like us who live it instead of what's in their medical journals. Good luck...Try to get your B12 levels checked again to show your doctor that they have in fact gone down since you have stopped treatment and insist on getting your injections again.
Hi Haggis,
I am sorry to read your situation, it happens more often and is absurd realy. The same thing happenned to my daughter, and it was sorted by getting her the "Active B12 test" in London..she's firmly back on B12 jabs for live. You have to get your GP to write a request for the test, but pay for it yourself. Most GPs can not say no if you offer to pay for it yourself..If you can not get to LOndon then there may be other options, best bet is to ring them, see:
For info about the active B12 test, see:
The majority (up to 80%) of serum vitamin B12 is not bio-available. Current assays measure total vitamin B12 which leads to a grey area where deficient patients can be missed - there is a poor correlation between circulatory total B12 and B12 status at the tissue level. Conversely patients can inappropriately be classified to a deficient state with the inconvenience and expense of long term supplementation regimes.
The cost of this assay will only be slightly more than a standard serum B12 assay. It will complement GSTS' serum methylmalonic acid assay which is a functional marker of B12 at the tissue level that GSTS is the only service in the UK to offer.
Those wishing to be tested must attend the phlebotomy department at St Thomas' Hospital with a signed letter from their GP requesting the test.
For more information on the Active B12 (holotranscobalamin) test at GSTS please contact the Nutristasis Unit at: nutristasisunit@gsts.com or phone Denise Oblein on 020 7188 7188 ext 52471 or you can visit the Axis-Shield website.
--------------------
It is possible to have a high serum B12 reading but actually be def in active B12, some explanation see:
I hope this all helps you to getting a better quality of life,
Kind regards,
Marre.
It doesn't really matter if you test positive for PA or not because it's the b12 deficiency that does the neurological and cellular damage. Intrinsic factor antibodies or even a lack of intrinsic factor don't affect the neuro damage one iota. The story goes that b12 deficiency is only deemed serious if you develop PA (and the diagnostic criteria keeps changing anyway which enhances the problems associated with the notoriously inaccurate tests) but that contradicts the science behind the metabolic pathways affected.
Since people with b12 deficiency who don't test positive for IFAs rarely have the cause of their deficiency investigated further then no one can say how severely their transportation mechanisims or malabsorption problem is.
You don't want to be hanging around to see if the anaemia appears - which is the most easily treated aspect of b12 deficiency - you want to be getting your jabs now because you are suffering from cellular and neurological degeneration.
If you can't get your jabs get some other form of treatment that you can easily access. Then put a complaint in to the powers that be.
You need treatment first and I'm sure those on here can direct you toward the most effective and quickly available.
Pernicious Anaemia
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