I am a 49 year old male who was diagnosed on July 3, 2018 with pernicious anemia resulting from autoimmune atrophic gastritis based on a B12 level of less than 147 and a positive test for the intrinsic factor antibody. I have been receiving daily shots of B12 (the cobalamin version). They are making me shaky, fatigued, flushed, tingly, etc. and also seem to be elevating gastrointestinal discomfort.
I experienced a severe bought of gastrointestinal discomfort about 5 years ago. The doctors did a bunch of tests including scopes of both ends and said that they didn't see anything abnormal. They did say that they found some signs of inflammation but didn't see anything to attribute it to.
At the time I did an elimination fast for 4 days and gradually introduced foods to see what I had problems with. I determined that I should cut out gluten and dairy and have observed this pretty strictly since that time. Since then, and until now, I have either not experienced significant distress or just got used to whatever state my gut was in. Now, as mentioned above, I am experiencing some distress that might be attributable to the stress of my diagnosis or the B12 or further deterioration of my gut.
Despite the limited diet and gastro issues, I felt fine and vigorous up until February of this year (notwithstanding that I apparently must/should have been B12 deficient for many years to get down the level I was at). In February I injured my knee. Due to a history of getting blood clots in my left leg when I am injured/immobilized, I was put on Xarelto (a blood thinner) to reduce clotting risk associated with immobilization and surgery. I has surgery in April and the knee is recovering (although recovery may have been impaired by low B12 levels apparently).
Though I felt fine otherwise, because of discoloration in the injured leg, I had the doctors to a CBC. The CBC showed macrocytosis, low red blood cell count but hemoglobin was in range. Subsequent tests confirmed that B12 and reticulocytes were both low and homocysteine and methylmalonic acid were both high (possibly related to blood clotting and/or leg color?).
I am now working on a leaky gut diet plan both because of the discomfort and because I would like to curb my autoimmune problems. I have read that people with my problem often also have a host of others - like Hashimoto's disease, etc. So it seems like I should try to do everything I can to help my digestive system and immune systems calm down.
It seems there are many participants on this site that are experienced, knowledeable and generous with their time. So after all that, I am hoping that some can help with the following questions:
1. Does my description make sense or am I missing key things/questions?
2. Are there any critical steps that I should take to stop things from further deteriorating? Any tests, dietary changes, environmental changes, etc.? In particular are there any genetic tests I should have done?
3. Any thoughts here on whether Xarelto had anything to do with this or whether someone with PA should be taking Xarelto?
4. Does my reaction to the B12 seem normal or potentially alarming?
5. Should the doctors be doing an endoscopy on me to check for cancer, ulcers, bleeding or signs of the gastrointestinal issues I am experiencing?
6. Should the doctors be doing tests for Hashimoto's or any other autoimmune disorders? Is there anything I should be looking at to figure this out? I have the shakes that started after I got this diagnosis and the B12 shots. I have the gastrointestinal discomfort. And I have a weird problem with a couple of my nails, where they are separating from the finger starting at the end. One of them is almost half way separated. I think it is referred to as onicholysis.
6. I have read some things indicating that PA due to autoimmune atrophic gastritis is considered a pre cancerous condition. Is that correct? Does anyone know the level of risk? Are there any books that address this and what, if anything, I can do to mitigate the risk?
7. Are a lot of the folks in the society people who have PA from autoimmune problems or people who have PA due to H. pylori infection or other problems?
8. Clive, I read with interest your long time living with PA. Is there any place that you have summarized your particular form of the disease and any tips on how you managed it? Any tips or advice that you or anyone else can share would be greatly appreciated.
Sorry for the long post and thanks in advance for any advice. I have a 4 year old daughter and aspirations of being around to provide for her so I am all twisted up about this. Finding other folks with symptoms and situations like me who have managed this and following their lead will help a lot.