I have a recent history (past 2 years) of re-occurring anemia which I have treated with iron infusions as needed, monthly B12 shots, and 1mg folic acid daily. My B12 and folate levels were high enough in June they took me off both. Now I am anemic again - low normal H&H but ferritin of 8ng/mL and iron saturation of 15% - and my thoughts are that going off the B12 may have been the cause - even though my B12 levels actually were on the low side of normal (247 ng/L). I know in some countries, "normal" is considered to be at least 400-450 ng/L
My Crohn's is at the terminal illieum and I also have GAVE - which is a vascular problem at the junction of the stomach and small intestine. Everything I have read makes me think that these two together would mean B12 would not be absorbed through food and the shots would be necessary for life. I do NOT know if I was ever tested for intrinsic factor-blocking antibody (IFBA) - they ran 42 different blood tests when I first got sick and I was too sick to even ask what they tested for (my hemoglobin was at 4.6 g/dL so I was pretty out of it).
I was given a B12 shot before the test results were in (based on my symptoms and my history of B12 deficiency - not sure if they would have given it if they had the actual value as they consider it to be low side of normal) and an iron infusion after the results came back. I go back in ten days for the second iron infusion plus actually meeting with my hematologist.
I want to be more proactive and try to avoid the anemia instead of just treating it as it shows back up. I am thinking of asking about additional testing, specifically IFBA. Also want to discuss trying to maintain a B12 of at least 400 ng/L.
my questions-
(1) if you get B12 supplementation, what level do they try to maintain?
(2) are there other tests I should ask about?
(3) is a hematologist actually the right doctor to monitor this? My GI can't give me same day blood work nor can he give me the iron infusions - plus it is MUCH harder to get an appointment with him. But I wonder if I am treating the symptoms more than the causes by using my hematologist as my first line of action?
My Crohn's is at the terminal illieum and I also have GAVE - which is a vascular problem at the junction of the stomach and small intestine. Everything I have read makes me think that these two together would mean B12 would not be absorbed through food and the shots would be necessary for life. I do NOT know if I was ever tested for intrinsic factor-blocking antibody (IFBA) - they ran 42 different blood tests when I first got sick and I was too sick to even ask what they tested for (my hemoglobin was at 4.6 g/dL so I was pretty out of it).
I was given a B12 shot before the test results were in (based on my symptoms and my history of B12 deficiency - not sure if they would have given it if they had the actual value as they consider it to be low side of normal) and an iron infusion after the results came back. I go back in ten days for the second iron infusion plus actually meeting with my hematologist.
I want to be more proactive and try to avoid the anemia instead of just treating it as it shows back up. I am thinking of asking about additional testing, specifically IFBA. Also want to discuss trying to maintain a B12 of at least 400 ng/L.
my questions-
(1) if you get B12 supplementation, what level do they try to maintain?
(2) are there other tests I should ask about?
(3) is a hematologist actually the right doctor to monitor this? My GI can't give me same day blood work nor can he give me the iron infusions - plus it is MUCH harder to get an appointment with him. But I wonder if I am treating the symptoms more than the causes by using my hematologist as my first line of action?
