Mrjustatip

[MrJustatip]

Hello, I'm 70 years old. Last week I had a vitamin B12 shot on Monday, and then on Tuesday I saw a hematologist because I wanted to rule out that I'm anemic. He ordered labs (they did them right there on site). A few minutes later, he said I was not anemic and was also probably not B12 deficient. (so then why have I suffered through all the B12 symptoms for over a year?). Then he ordered an IFA test for intrinsic factor. He said he'd be shocked if the results came back positive for antibodies which would indicate I'm anemic. Well, the results came back positive for antibodies, so I am apparently anemic, but wait, was that a false positive because I had a vit. B12 shot only 2 days before? I've read all sorts of stuff on this, some say it's definitely a false positive if B12 were given within 1-2 weeks before an IFA test, and some say a positive is still a positive. I mentioned to him that my wife and I had been taking B12 shots for weeks now. Appreciate any thoughts on this.

[jade_s]

Hiya MrJustatip, if it was 2 days it may well be a true positive. Heck I've injected the morning of an IFAB test and still got a negative result.

Here is a long discussion we had about this recently: healthunlocked.com/pasoc/po...

How often are you injecting? If you can afford to wait a week or two (or whatever his criteria is for avoiding a false positive), then maybe ask to be retested. No guarantee it will come back positive again even if this first one was positive, so it's a risk.

BUT it's always good to have PA on record so I'd probably give it a try.

Did they also test gastric parietal cell anitbodies? Thought most docs don't recognize it as diagnostic for PA, it can still show an issue with the stomach, which can lead to an endoscopy, which can lead to a diagnosis of autoimmune metaplastic atrophic gastritis (AMAG), which means you should be periodically screened to check for the rare risk of stomach cancer as well as lifelong B12 injections. Sometimes IFAB can come back negative because AMAG has destroyed all the stomach cells so there's no IF to attack. GPC cells make stomach acid as well as intrinsic factor. AMAG also means you likely have low stomach acid, so supplementing with apple cider vinegar or lime juice can be helpful. As we get older, stomach acid production also goes down. You may also ask for an endoscopy if you have digestive symptoms even without antibodies. Sorry if this is an information dump! Please do ask if something needs to be clarified, and hope I haven't distressed you! Forewarned is forearmed ....

AMAG : msdmanuals.com/professional...

Regardless I'd say keep on injecting

[jade_s in reply to jade_s]

Actually scratch the retesting. Nackapan's right. Frame it!

If you go to another doctor no one will know you had an injection the day before, they'll just see IFAB positive. Count it as real, which it likely is

[thyr01d in reply to jade_s]

Hello again jade_s, may I ask, could this AMAG come under a description along the lines of "an autoimmune condition that will affect your stomach so we must keep an eye on it"? One that was revealed in a blood test?

[jade_s in reply to thyr01d]

Hi thyr01d, without knowing exactly what they were talking about, I would say yes. Likely gastric partietal cell (GPC) antibodies. If it was intrinsic factor, they would have diagnosed PA.

Although GPC ABs is linked to AMAG, it also occurs in people without gastritis -- though some papers suggest that it's still early stages and many of those people will go on to develop AMAG. I have a reference on that somewhere if you want it....

From an NHS site on GPC ABs and AMAG (they call it "auitoimmune gastritis "):

southtees.nhs.uk/services/p...

Paper describing its relationship to other autoimmune diseases.

ncbi.nlm.nih.gov/pmc/articl...

[thyr01d in reply to jade_s]

Thank you so much Jade, I think you may be my saviour!! The words in italics were spoken by a GP who retired soon afterwards. Subsequent GPs have said they don't know what she was talking about. Now I have many symptoms of B12 deficiency being dismissed by my GP and I'm wondering if this is the missing link. I am awed by the amount of information you remember and your kindness in sharing so much, huge thanks to you Jade.

[jade_s in reply to thyr01d]

You're very welcome thyr01d!! Thank you for the kinds words xx

I've spent a good part of the last 7 years reading about all this so i'm glad something stuck, the rest i look up in my notes

I'm happy to continue discussing if you make a new post if your own. I have some suggestions & more questions - keeping in mind i'm not medically trained.

[Nackapan]

Frame that result.Get a paper copy for your own records

Carry on with your b12 Injections.

Record your response to b12 treatment.

[Gambit62 Administrator]

please note that you can be B12 deficient without having anaemia - 20% of patients with B12 deficiency don't have anaemia when they present.

Though the title of this forum includes the word anaemia, pernicious anaemia is actually an historical misnomer. B12 deficiency was first observed - hundreds of years ago as a type of anaemia that led to madness and death. We now know that the madness and death weren't caused by the anaemia but by B12 deficiency ... and anaemia is another symptom.

B12 is used by a lot of processes that go on in your cells so anaemia isn't the only mechanism that causes symptoms. You were almost certainly B12 deficient, and had been for a while. If you have any problems with stomach acidity these are probably because your stomach acidity is low, given your age - which will be stopping you from absorbing B12 in your diet.

[MrJustatip in reply to Gambit62]

Thank you so much for your information and comments. Just when I feel like I have learned a whole lot about all this, I then realize how little I know. Thanks again

[WiscGuy]

If you haven't already seen it, look up the article, "The Many Faces of Cobalamin (Vitamin B12) Deficiency", from the peer-reviewed medical journal, Mayo Clinic Proceedings. This topic is discussed quite thoroughly in the article. One point that is inferred is that there are two populations of patients with B12 deficiency:

1) the symptoms of people in the two groups are different, with one group having hematologic symptoms, and the other group having neurological symptoms;

2) the diagnostics are different, with hematologic symptom patients showing up in out-of-range blood test results (ie, diagnostics are based on results of lab tests), while patients with neurological symptoms are diagnosed through a clinical process of noting symptoms and degree of severity of each symptom, looking for alternative explanations of symptoms, and, if no other possible causes are convincing, arriving at a diagnosis of B12 deficiency with neurological symptoms, REGARDLESS of lab test results;

3) treatment is different, with hematologic symptoms responding readily to minimal treatment of B12 injections, while neurologic symptoms are treated with 2 or more injections per week, depending on symptom response, for at least two years, with some patients unable to decrease frequency of injections, based on symptom response.

Don't expect any physicians to know any of this; if you see a physician who does know any of these things, count your blessings. Print the article, highlight the parts I have mentioned, and any other parts that seem pertinent to you, and take the article with you to each doctor appointment.

You were lucky to get a hematologist who, though largely ignorant of the population of patients with B12 deficiency with neurological symptoms, at least was flexible enough in his/her thinking to do an intrinsic factor antibody test; many doctors will fight you tooth and nail on anything and everything related to B12 deficiency diagnosis, and if they lose that one, will fight you tooth and nail on everything related to treatment of B12 deficiency with neurological symptoms, rather than following guidelines, or will fight you tooth and nail by choosing the most conservative (ie, withholding treatment) possible interpretation of the guidelines.

[MrJustatip in reply to WiscGuy]

Thanks for your kindness and information. So helpful

[Showgem in reply to WiscGuy]

The information you have given regarding two types of b12 deficiency isn’t altogether correct as many of us have had both haematological symptoms and and also very serious neurological symptoms.

Many of us who have been diagnosed with PA because of our haematological symptoms continue to have many neurological problems even though we are having b12 injections otherwise the PAS society wouldn’t exist.

[WiscGuy in reply to Showgem]

You are correct that the divide is not sharply drawn or permanent.

On the opening page of the article, "The Many Faces of Cobalamin (Vitamin B12) Deficiency" is the following:

"Several scientific articles and textbooks have described the clinical presentation of patients with cobalamin (vitamin B12) deficiency. After the classic presentation of Addison-Biermer disease with megaloblastic anemia, many generations of doctors have been educated with the view that vitamin B12 deficiency exclusively presents itself with this type of anemia. Additional cases have been reported in which neurologic abnormalities were the main presenting symptom, with subacute combined degeneration of the spinal cord as one of the most feared manifestations, often leading to permanent disability. Lindenbaum et al reported a large series of 40 patients who had neurologic symptoms or psychiatric disorders caused by vitamin B12 deficiency but who had no anemia or macrocytosis. Psychiatric symptoms may vary from depression to mania, psychosis, and occasionally suicidal thoughts

(Supplemental Table 1, available online at mcpiqojournal.org). The reason why

some patients mainly present with megaloblastic anemia and others with neurologic symptoms remains unknown."

So the key is "mainly present ". In other places, I don't recall just where at the moment, it is said that as cases of either type become more severe, patients from each group tend to develop symptoms typical of the other group. But I believe the key point the authors wish to make is that doctors should be aware that they are likely to see patients with only, or mainly, hematologic symptoms, or, especially surprising to physicians, only with neurological symptoms and no megaloblastic anemia.