B-12 deficiency, Crohn's and anemia

[Malice67]

2014 was a pretty rough year - starting with a hgb of 4.6 g/dL and hct of 17.6 - finally diagnosed with Crohn's plus GAVE (watermelon stomach which can cause internal bleeding). Treatments ave been simple - iron infusions, Penatsa / Zegerid / on and off again B-12 shots. Plus two cauterizations for the GAVE, which have been out patient. Insurance has covered almost everything. So I should feel lucky, compared to everything you guys are going through, this is almost nothing, and I usually do manage to keep that perspective.... but not today.. just FRUSTRATED

I started feeling tired and light headed last week, and when it didn't go away, I had a cbc yesterday. Got message from doctor (GI) today with the results, but not what I should DO about it. We are playing phone tag ...

GI thinks anemia is due to the GAVE and said in April if it came back I would have to have another cauterization, so I am expecting to have to schedule surgery. Hematologist has been the one dealing with the iron infusions and B-12, but takes me off the B-12 shots as soon as the numbers are on the low side of normal. Then a 4-6 months later the anemia comes back and I have to have infusions and B-12 shots again.

Am I not right that Crohn's in the terminal illieum can interfere with B-12 absorption? In my mind, if they would keep me on the monthly B-12 shots, it would probably take care of the re-occurring anemia. (Another reason to think this is that in March my TIBC was low) So if hematologist does not agree, do I

- figure he knows best? (not liking that option too much)
- start shopping for a new hematologist?
- just start taking sublingual B-12 and see if that is enough to ward off the anemia?

any suggestions? And again I apologize with a problem so minor compared to what so many of you are going through -- just tired of it all.

 

[ronroush7]

My numbers are pretty good right now but no one mentioned to me about going off b12. I might go for a second opinion. You can come here no matter how small it may seem. Let us know how you are doing.

 

[fuzzy butterfly]

Hi, I am on b12 constantly and also iron. I had terminal ililum resection 2 n a bit yrs ago.
Yes you are correct in saying that it affects absorption, it does of most things we ingest, which makes things awkward.
Hope you can get this sorted out soon.
Best wishes :hang:

 

[shamrock15]

Definitely do the oral B12 - it has worked really well for me over the last decade or so and my terminal ileum is gone. From what I remember there isn't an issue with overdoing B12. Your body can store several years worth safely.

Otherwise, try to remain patient but determined with your team. Make them justify their decisions for you rather than tinker. I had issues with anemia for 3 years straight. Hope yours settles much quicker!

 

[Malice67]

So my hgb isn't in a dangerous zone (yet) -- its at 9.5 g/dL .. but both my GI and my hematologist won't fit me in until a MONTH from now, which does make me worry where I might be by then. In the past I've automatically gone directly for an infusion if I was below 10 when tested at the hematologist office.

Trying to decide if its ok to go on vacation or not in the meantime... would be driving so could come back early if needed, but would take two days to return. Would be hanging with my parents and my inlaws so they are both good with keeping activities low energy - but I already am lightheaded when first standing up. No shortness of breath or chest pains like the first time (hgb 4.6) so I do know what the more serious symptoms feel like and would hit a doctor / ER on the trip if those showed up... I don't want to take the family vacation away ...

 

[ronroush7]

As long as you can get to an ER in a hurry if needed.

 

[D Bergy]

The sublingual B-12 tablets worked better fot me than injections. For the first time my last test was in the normal range. I don't miss the shots either.

Dan

 

[Tommy21bn]

If you can take the tabletz rather than have an injection then take the tablets. Can your Hematologist do a telephone consultation?

 

[Malice67]

Vacation is going ok but having to take things very low key... getting more tired and sometimes dizzy but no chest pains or shortness of breath so I am guessing I haven't dropped very much in past three weeks . Have been on phone with insurance company and hematologist to try to get iron infusion preapproval started so i could have one at appointment in five days but they won't pre-approve based on hemaglobin -- need the actual ferratin numbers. So they will test ferratin on Wednesday and will have results Thursday. Promised to expediate the pre-approval if value is low (can't imagine it won't be!) so I an have infusion at my next appointment in ten days. I hate the new preapproval requirement but at least I don't have to pay all of this out of pocket. (not adding the B-12 sublingual now because I don't have a current value and don't want to alter it before the test)