If you have pernicious anemia, or B12 deficiency without PA, I would like to hear from you.

[altarflame]

My regular doctor is a small town GP I've been seeing since I was 5. She takes continuing education very seriously, and is willing to spend about 45 minutes per visit with you, hearing every single thing out and addressing any question you have. She remembers details from your history and will go do research on things you've read that she might not know about (such as my sister's ongoing systemic yeast concerns). She's very in demand. She has been the one to figure out a couple of things that nobody else could, about me, over the years. And she's real with you. I've been seeing her for interim care since my rheumatologist closed, and she has preemptively done lots of tests other people were not willing to - such as a full thyroid panel rather than just TSH, and looking for vitamin deficiencies. She suggested B12 shots immediately when she saw my B12 problem. There was a thing with me really side-eyeing her whole hearted support of a surgeon I had some bad experiences with, years ago, but I let it go.

I got my pernicious anemia results (see previous entry) from a gastroenterologist. He's a little younger, up in Miami in a big and very modern/slick group GI practice, and has national awards displayed listing him as the #1 gastro in the US during various recent years. He is fascinated with my case because of the whole retained surgical instrument flim flam. He tested for pernicious anemia on a hunch based on how much better I'm feeling since I started getting the shots, and also my inflammation. His assistant is the one who called me, and she emphasized (when I asked) that this is a definitive test and not something that "may or may not" mean something.

So after a couple of days adjusting to this news, during which I browsed through Pernicious Anemia Society forums and PA Support facebook pages and even the tumblr tag and got lots of peoples' stories and links and advice, I was very confused and surprised when my GP, who I was following up with today, said I am not even technically anemic since my B12 levels weren't technically totally bottomed out, just low, and that what I have is "just" B12 deficiency. She said "pernicious anemia" is a very outdated diagnosis that actually refers to a few different situations people can have, none of which are actually "pernicious" or necessarily "anemia." Basically, she said he was full of shit and that I should not worry and we should keep supplementing and see how my symptoms do or don't continue to improve and how my blood is looking as the weeks and months progress, and that I need to keep my upcoming appt with the rheumatologist to pursue answers to my inflammation questions with them. She mentioned a neuro down the line if my neuropathy doesn't improve enough. She said to just not even ever use the term "pernicious anemia" at all because it would make me sound uneducated about health in general. That did not come out as bitchy and ridiculous as it looks here with me parroting it back in text form. Her goal was obviously to comfort me and guide me in a different direction.

Except...I got my blood test results, that the gastro sent to her, in order to take them to my rheumatologist appt, and they clearly indicate that I have antiparietal cell antibodies, meaning an observable immune attack on the stomach lining that produces intrinsic factor, which is a protein that allows people to absorb B12 - which is all supposed to mean my diagnosis - or possibly a handful of other things, such as ulcers, and diabetes/thyroid problems (which I do not have). My test results also show positive for intrinsic factor antibodies, which attack the protein itself when it's already made, and that is basically the other test they do for this specific condition, along with measuring your B12 levels to begin with. Any of these three tests, googled independently (antiparietal cell antibody, intrinsic factor antibody, b12 blood serum levels) yield tons of internet results from big medical sites that talk a lot about pernicious anemia.

Googling "pernicious anemia" with "outdated diagnosis" yields NOTHING to support what she's saying o_O On the other hand, just googling "pernicious anemia" on it's own brings up drop downs for "treatment," "pathophysiology," and "test", with over a million results showing for just the term itself, of which the first few options are sites like mayoclinic, nhlbi, webmd, healthline, emedicinenet, etc - most of which clearly display 2012 and 2013 updates, and all of which explain just what I've been thinking prior to my visit today.

GP is somewhat hostile to web research, and a little condescending about what she calls "practicing medicine without a license." I am not as against that attitude from doctors as I used to be. I was, after all, once certain that I had hypothyroidism, when I actually had a sponge. I could easily go to a website like StopTheThyroidMadness (that I know HAS been helpful for others in my life) right now, check off tons of symptoms I've been having, and start ordering Armour from Canada thinking it was just what I needed. Seeing the list of symptoms that comes from B12 deficiency and how perfect it is, and thinking back to how familiar I'd gotten with the rheumatoid arthritis symptom list, is enough to make it clear to me that subjective situations + a little bit of information can = an awful lot of wrong assumptions about what's going on in your body.

But...this is doctor vs doctor. And concrete lab results. I don't want to sever this relationship with my GP (if nothing else, she is very willing to provide me with frequent B12 shots, I'm in and out in under 10 minutes for that, and being 1/2 mile from my house that's very convenient).

I tried addressing the specificity of the tests with her directly multiple times today and was not satisfied with her answers. They seemed to be, "I know why that stuff you're saying doesn't matter, and I'm not going to tell you why, but just trust me that doctors know a lot of stuff and I'm telling you, 'pernicious anemia' is SOOOOO 100 years ago." (She did literally mention "100 years ago")

Gah. What would you do in this situation? I'm hoping my new rheumatologist turns out to be awesome, I can lay it all out for him/her, and then they will provide a tie breaker or something.

*sigh*