Hello Everyone...I'd like to start by saying how much I appreciate each of you. I have learned an enormous amount of information since joining this group and it has helped me in so many ways; one of which is how to form questions to ask my doctors (I go in prepared with written questions as my brain is too fuzzy on its own). It was about a month ago when I wrote to you that I had been diagnosed by my hematologist after my parietal cell antibody test came back abnormal. Many other tests, though, were normal. Some of you pointed out that because I have autoimmune atrophic gastritis that perhaps I have B12 deficiency because of that and not necessarily PA. Armed with this, I met with the hematologist's nurse practitioner last week and asked her if I had PA or not. She ordered even more tests and updates on a few of the one's I've had recently. The tests included: B12, folate serum, CBC Diff, iron TIBC, Ferritin, Zinc, copper blood, Vitamin B1, Comp Metabolic. All of them have come back in the normal range - some low normal like B12. B1 was very normal - right in the middle but B12 was less than a month ago. She said this was indicative that I am absorbing some nutrients but not B12 which means I could indeed have PA. They gave me a phone number to call to make an appointment with another doc for a second opinion. I haven't made the appointment yet. Before I do, I was wondering if any of you could provide me a list of all the essential blood tests that determine PA (the Cleveland Clinic no longer does the Shilling test). I will then look at all the tests I have had to make sure it includes the tests I find out from your answers. I remember having MMA, homocysteine, etc. My symptoms are the same as usual: tired, sleepy, numb toes, pressure like headache, foggy foggy foggy brain - did I say foggy brain? insomnia, body aches. When I increase my sublingual dosage the symptoms get worse so then I decrease them and feel better a day or two until I feel bad again. Injections make me very sick - can't breathe well, tight chest and all the other things I've listed. Thank you for all your help and consideration.
What are the Significant Tests to Det... - Pernicious Anaemi...
What are the Significant Tests to Determine Pernicious Anemia
Sounds ad though you are getting thoroughly tested.
Intrinsic factor anybody test picks up about 50% of those with PA.
Some including our chairman has had several of these tests before a positive one.
One a positive one no more testing is needed.
You have PA.
Like sny antibody test it's what's there at the time of testing.
Often an absorption problem csn include folate ferritin vit d and iron.
Your symptoms do 'shout' a deficiency.
What ever the reasin for the absorption problem the symptoms are the same.
Our bodies just not working properly.
Hence many on this forum do not have s definitive diagnosis .
It's even 'assumed ' by the medics .
As the treatment is thr same.
Even my daughter who even had the associated megobolastic anaemia . Low folate . B12 I 'her boots' very low ferritin .
Left too long and it caused POTS.
Still hasnt PA on her notes .
Not even sure she had the IFA test.
She had an endoscopy as can't digest properly. Reflux ect.
The clinical picture describes PA.
Also put on b12 Injections for life snd daily folate as it drops otherwise despite a good diet. 🤷
Alot of recognition and better diagnostic tool is needed. .
Assumed PA is treated in the same way but unfortunately because of ignorance csn also be withdrawn.
So keep going with every investigation you csn get.
Does every firm of b12 jnjrction make you ill?
I got worse before better on b12 Injections 💉 so glad I persevered though as nothing rlse found to treat to date .
Hope you settle on s treatment plan soon and get relief.
I’m afraid that there is no 100% conclusive test for everyone with Pernicious Anaemia. It is a grossly under-researched condition . That’s why this forum is so valuable . Only about 50% of PA patients test positive with the intrinsic Factor Antibody test . This is a bad situation for those P.A. patients who test negative as most doctors then do not believe they they have P.A. i will try to answer your question in a different way …… Thus ……
How to diagnose Pernicious Anaemia
By elimination
if you are not vegan or strict vegetarian.
If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any acid-negating preparations and other pharmaceutical drugs that deplete vitamin B12 ( look up on the internet )
If you do not abuse Nitrous Oxide ( laughing gas)
If you do not have fish tapeworm
If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———
Low serum B12
Symptoms of B12 deficiency (Google to find out - and there are many symptoms.)
Gastric atrophy restricted to the corpus and fundus
Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection
Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized
Hypergastrinaemia (various causes including Helicobacter Pylori infection .) Of course a positive result for an Intrinsic Factor Antibody test( IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative.
High Homocysteine occurs in Pernicious Anaemia patients , but there are also other causes.
High levels of Methylmelonic acid can also be indicative of Pernicious Anaemia.( In blood or urine )
Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above . I did get a conclusive diagnosis ( lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, and have to cope with the irreversible symptom .
Reading posts on the forum has been very informative. Best wishes .
I had these tests for PA here in the U.S.
- CBC blood cell count and MCV/MCH which can show enlarged deformed red blood cells (megaloblastic anemia)
- Intrinsic Factor Antibody (IFA) Test - This test is positive for 50% people with PA. A negative does not necessarily mean you do not have PA
- Parietal Cell Antibody (PCA) Test - 90% of people with PA will test positive for PCA.
- Methylmalonic Acid (MMA) Test - This test shows how your body is efficiently using B12. The serum B12 test shows all B12 in your blood at the time of test both active (useable by the body) and inactive (not usable).
Of course an evaluation of your symptoms is also included with these tests. I had all of these tests and all came out positive except IFA that was negative so I was diagnosed with PA.
Not that after you start injecting B12 the Serum B12 test is useless it will always show high. Mine was maxed to the upper range at 2,000. But the MMA test is from what I understand still valid to check how you are utilizing the B12 even after you start injecting.
Tests for B12 deficiency - serum B12 or holo-T/active B12, MMA, homocysteine
MMA needs to be done with kidney panel to rule out other causes of raised MMA. Homocysteine can be raised just by folate deficiency but if you have folate absorption problems that increases the likelihood of a B12 absorption problem, and vice-versa.Serum B12 and holo-T/active B12 are difficult to interpret as single point tests because people tend to sit at a specific point in the normal range that suits them. Easier to interpret as a test done several times over a period of time. Falling levels indicate B12 absorption problems. Serum B12 is only accurate to 20% so you need to show a drop greater than this for result to be significant. Holo-T/active B12 is more accurate so can pick up an absorption problem with drops that are less than 20%.
Tests for PA as specific cause of B12 deficiency -
IFAB (positive is good but negative doesn't rule out PA as test isn't very sensitive.
GPCA (not recommended by WHO as gives high rate of false positives)
Gastrin - relatively new test - patients with PA tend to have very high levels of gastrin - I'm not familiar with the ins and outs of this test but the results in patients with PA do seem to be quite specific to PA, ie levels off the scale regardless of when patient last ate.
Functional B12 deficiency (B12 deficiency at cellular level though serum B12 levels are good/high): MMA and Homocysteine (see comments under Tests for B12 deficiency). Some haematologists suspect this combination may not tell the whole story as there are a large number of processes that go on in cells that use B12 and these tests only look at 2 of them.
Please note - the term PA is not used consistently by medics. On this forum we use it to mean a particular auto-immune gastritis that attacks the mechanism that allows you to absorb B12, leading to a B12 deficiency, but it can be used to refer to the megaloblastic anaemia that is just one of the symptoms resulting from B12 deficiency.
Some links that may be helpful.
I'm in UK so some info may be specific to UK.
Testing for PA
pernicious-anaemia-society....
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test.
Gastrin test
labtestsonline.org.uk/tests...
I've also read that a pepsinogen test may be helpful in diagnosing PA.
Latest PAS newsletter mentioned a new set of tests linked to gastritis.
Blood tests linked to B12 deficiency
b12deficiency.info/b12-test...
Other B12 links.....
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some members not in UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Recent PAS newsletter mentioned a new PAS support group starting in Chicago area.
B12 Deficiency Info website
B12 Awareness (US website)
US link about PA
rarediseases.org/rare-disea...
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 Institute Netherlands
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Films and videos about PA and B12 deficiency
PAS conferences
pernicious-anaemia-society....
Films about B12 deficiency
Wall Street Journal article about B12 deficiency
wsj.com/articles/vitamin-b-...
US article about B12 deficiency
nhlbi.nih.gov/health/anemia...
I am not medically trained.
Scientist, not medic.
Nobody [to my knowledge] does the Schilling Test any more, because we can't get the materials, and the 'Mad Cow Disease' scare stopped us using slaughterhouse-sourced Intrinsic Factor. It was the one test [or more accurately, set of tests] that could give us indications of B12 absorption with and without IF, so as good a diagnostic tool as anything we've had. So, we have to move on.
A competent, alert and sympathetic GP is a good place to start. PA is as much a clinical diagnosis as anything, but the indicative tests we have [primarily IF antibodies] will help 50% of cases, but the other 50% need careful consideration.
As others have said, PA is as much a diagnosis reached by eliminating other causes of B12 deficiency. Low serum B12 at presentation is a good start, but the clinical presentation of B12 deficiency can be very confusing. Some are anaemic. Some are very macrocytic. Some have considerable neurological deficit, but certainly not all do. Some present with other deficiencies too. That's why you need a doctor who understands the condition.
If the B12 level is very low, then the risk of leaving it to see if oral B12 will help is a real risk, but it's the patient taking the risk, not the doctor!
Even when we had the Schilling Tests it was necessary to replace the B12 stores before performing the test, otherwise it was likely to give a misleading result. Nothing's simple.
Digressing into treatment, once the stores have been replaced and the symptoms have reduced, mega-dose oral B12 MIGHT be worth considering. It helps some but not others.
PA was given that name because it was [and still is] Pernicious. Untreated PA historically was fatal within a couple of years. If it wasn't, then it wasn't PA.
I hope this helps. Good luck.
"But it's the patient taking the risk, not the doctor"
Precisely, that's the sad thing especially when the doctor states your not that low !
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