Hi there,
I have had 2 positive intrinsic factor antibody tests. I also have all of the symptoms of PA. Fatigue, nausea, pins and needles in feet, loose stools, acid reflux and difficulty concentrating.
My blood serum B12 levels however seem within the normal range.
What do you guys think this means? My doctor still thinks I just have chronic fatigue syndrome.
Thanks for your advice guys 
You have PA .!!If mot on injections or supplements that can skew the test.
Two positive IFA tests. Why are the doctors ordering the tests if they are ignoring the results.??
I've been told CFS (an old term now)
B12 caused it
It's a symptom not a diagnosis
I have read that even if you are on supplements or injections, it will not skew certain IF tests. This is what Labcorp in the States stated as well.
Yes ! I'm aware of that .. it's knowing they are using the latest test.equipment jn the lab ? Private ones often have older ones.
They still want you off b12 for a while
It seems that if high levels are circulating in yourr bloodstream it's possible to give a false positive.
I just Hooe they come uk with a more definitive test.
We have enough problems of recognition without a test doctors seem to ignore the results of or keep retesting?.
It’s all so confusing for me to be honest. Others have said they want you to stop “for a while.” I’m not exactly sure how long “a while” is. No one told me to stop SI before taking the test. Only later, when I found all this out, did the lab say it wouldn’t affect the kit & equipment they use. Nine months into this, I feel more confused then I did at the beginning. So much contradictory information out here.
Yes i agree. My low b12 was found in 2018 and I'm stil searching for answers to try and get some life back I can relate to.
Exactly, my low B12 was discovered the end of last year. Thought the positive IF test gave me some answers. Now I have doubts. Not sure if I’m coming or going.
I woujd carry on trying yo get the frequency of b12 right for you.Also to get any other deficiencies in balance.
The treatment the same
My vitamin D was as low as 5.1. Iron is fine. Since I have been supplementing folate is over 20 now. I need a solid program. Too much contradictory information out here. I don’t know who to trust at this point.
My vitamin d dropping was the first sign in hindsight . My fokate a little low but responded a vit too well to a low supplement so is 20 now .I've cone to the conclusion at present yo try snd trust in b12 to quietly improve my symptoms.
I like a solid treatment plan too.
All you can do is get every test you can to eliminate anything else.
Trust yourself.
I've been told too many times I'm depressed. I'm not. Just dealing with daiky symptoms that actually staying a bit 'flat' helps.
My Gp convinced I needed a serotonin boost.
I didnt /don't.
She doesn't know . I've not even had a face to face for 16m.
Only thing at present found with me to treat is b12.
So that's what I'm doing.
My ferritin dropped so di have a low dose maintenence iron tablet.
I have regular bloods .
Yes it's hard with no proper medical direction.
I totally agree.
If b12 had healed me I'd just kero taking it to maintain.
But as I'm not I kero searching In case something has been missed.
My ferritin is fine. Normal ranges. I was just trying to get a handle on the cause of the B12 deficiency, as I have celiac disease & was on a plant-based diet much of the time for several years. (Though I did eat chicken & meat from time to time.) With the positive IF Abs test, I thought I had answers. Now, I’m not so sure.
My B12 serum levels were in the normal range at diagnosis. (around 240, from what I remember) I've also had 2 positive intrinsic factor tests, which I had to fight for, because, in the doctor's words (he was ancient and condescending in the extreme), "There is absolutely no way that you have P.A., because your B12 level is normal!" I was taking a multivitamin tablet each day, on the his own instruction at the time of testing, due to chronic anemia and deficiencies. Apparently I had been very silly and it was my own fault that I was ill, as I obviously wasn't eating properly, which was utterly untrue. I also had all of the classic signs of P.A. at that level.
Luckily, one of the younger doctors immediately started me on injections. A lot of doctors honestly have no clue about P.A!
" A Lot of doctors honestly have no clue about P.A.
Sad but true.
It would be even better if Doctors didn't insist it was our fault in one way or another.
I don't understand why doctors don't check out the state of your stomach, as evidence of atrophic gastritis would confirm the diagnosis. When I became ill (here in France) my levels never went below 300 (again I was on b12 supplements) so doctors had difficulty confirming the diagnosis until I had the camera down which, with my positive Intrinsic factor tests and symptoms, clinched it.
I agree. If there is any doubt, get an upper endoscopy to confirm the results. My Dr. ordered one and results “The stomach biopsies from the body greater and lesser curvatures showed atrophic mucosa with chronic gastritis and loss of oxyntic glands. These findings are compatible with the patient's history autoimmune gastritis” confirming PA. So these results can be given to any Dr. who is not wanting to continue B12 injections.
Seems odd as IFA antybody test very accurate if not on b12 injections s of high doses of oral b12.
I've no idea why they uses this test if they ignore all results.
Hi,
Apologies for a short reply but feeling exhausted today.
I've written some very detailed replies in the threads below which may have B12 info you will find useful eg causes of B12 deficiency, books, articles, UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Hope you pick uo soon sleepybunny
It annoys me that "syndrome" now seems to get used to mean "diagnosis without treatment" !The "syndrome" in chronic fatigue syndrome (CFS) or irritable bowel syndrome (IBS) actually just means "a group of symptoms" - which is not a diagnosis.
So pernicious anaemia frequently has both chronic fatigue and irritable bowel as symptoms, but this does not prevent PA being the diagnosis that explains their presence. Nor does this prevent the need for treatment of the true cause - which is an incurable condition that can be managed. Easier to do with the support of a medical professional.
Two positive intrinsic factor antibody test results means that you have been proven twice now to have PA. (Incidentally, 40-60% of those with PA will still test negative, so described as having IFab-neg PA)
There really is no need to go through an endoscopy to prove this for a third time.
You might, however, want to request one in order to ensure that you do not have NETS - the type of very slow-growing tumours referred to by kburrows . These are, thankfully, very rare- but if present, obviously need to be monitored.
More commonly, patients with untreated neurological symptoms can have developed irreversible damage to myelin sheath protecting the nerves in the spine. This damage can be detected by a neurologist by an MRI scan of the spine. If caught early enough, and treated with sufficient B12, the damage can be reversed.
I would also ask for the following blood tests if not yet done:
folate, ferritin, vitamin D .
Check to see if any results are low even when within range, and ask for a printout of results so you can monitor direction of travel.
Thyroid could also be struggling.
"My doctor still thinks I just have chronic fatigue syndrome."
Misdiagnosis of B12 deficiency as other conditions
b12deficiency.info/misdiagn...
Misdiagnosis of B12 deficiency as ME/CFS
martynhooper.com/2018/02/10...
If you're in UK, current NICE guidelines for ME/CFS do not include requirement to test B12 levels.
New NICE guidelines for ME/CFS are being drafted but will take a few years before published.
nice.org.uk/news/article/ni...
More discussion on ME Association website.
Martyn Hooper, chair of PAS has has some involvement with new draft guidelines for ME/CFS.
I suspect a good proportion of forum members here have a diagnosis of ME/CFS/PVFS or Fibromyalgia in their medical history.
Martyn has also had input into a proposed new NICE guideline for PA (Pernicious Anaemia).
Intrinsic Factor
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