hematologist visit

Hi people! So I went to my hematology appt. yesterday, re. the macrocytosis & anemia. It was interesting, she (the doctor) asked me a million questions, really talked up the colon cancer angle.... . She is pretty sure the anemia is due to the Imuran & Humira, as both drugs suppress bone marrow production, & the fact that I bleed daily, albeit very small amounts. She doesn't think I should quit either med, which is good to hear! She took blood, & did more intensive testing than my GI had done, & it turns out my iron levels are even lower than we'd originally thought, based on the labs done by my GI, which was just your basic CBC, etc. So, I got a script for some super duper iron pills, & am supposed to take 2 a day, with orange juice & a Vitamin D tablet. Apparently the Vitamin D & citrus aid absorbtion- everyone knows iron is tough to absorb, & I guess those of us with IBD have a harder time with absorbtion overall. I see her again in 3 months, & have to get labs done the week before my visit. If things are looking better by then, well great! If not, we can do an iron IV infusion, which will last in your body about 6 months. The hematology dept. is also the oncology dept, I guess they go hand in hand- soooo, she did tell me she sees a LOT of colon cancer, & that I really ought to consider surgery. She is also going to recommend my GI do yearly colonoscopies, for more vigilant cancer screening. I'm glad I went- initially I thought it was a waste of time, but now am pleased with the visit- I finally have an answer as to why I'm SO fatigued all the time! And I'm hoping I start to feel more energetic once I start my iron pills, which will be today. Hooray!

Good luck Eva Lou,
The iron Pills are normally the first step I also had folic acid. For me they did not work so fast so I received the infusions (2) over a year after monhs of a plateau the infusions worked. Now I am at a normal level

I had been so pale after the infusion I looked like I had been in a tanning bed.

Nope, still anti-surgery for the most part! Unless dysplasia shows up thru a scope, I won't get the colon removed as a preventive measure. Foolish perhaps, but....  I am due for labs in 3 months, then I see the hematologist the week after I get the labs done. Just started the iron supplements today- the script only cost $4.85!!!! Nice! So 2 pills a day, along with Vitamin D, which supposedly enhances absorption. I haven't talked with my GI yet- he told me to see the hematologist, then get in touch with him. And the hematology ppl. will send him the office note, labs, etc. I'll probably try to touch base with my GI sometime next week. Socalsd, have your iron levels remained good since the infusions? And also, is your screen name by any chance a reference to SxDx???? Love them. LOVE them. LOVE THEM...

I am on prescription ferrous gluconate, 650 mgs/day- not sure what the generic name is. She did check my ferritin & hemoglobin, both were low, but not super low. I don't know what type of labs she ran, just that they were more in-depth than a CBC, etc. She didn't say how long it could take to build up iron, but I got the impression that if after 3 months things aren't looking drastically better, we'd move to infusions. She actually suggested the infusions first, but I asked to try the oral supplements before that. I don't think iron infusions are all too rare- other ppl. on here have told me they've received them in the past too. Maybe it depends on what type of specialist you see- you'd think a hematologist/oncologist may do them more frequently than an infectious disease specialist?? Who knows.  Has your GI suggested you see a hematologist? It was my GI's idea, I think he wanted to cover his bases in case it turned out to be lymphoma or something! I am glad I went though, initially I thought it would be a waste.

Just thought I would mention that with the iron tablets you might find that your stool turns to a much darker blackish colour(so don't be worried) and you may tend towards constipation. It is probably a good thing to try tablets first but the infusions are much quicker and avoid any affect on the gut. It is amazing how much better you feel once your iron reserves are back to normal.
Sue

My PCP, infectious disease dr, and GI do not seem concerned with hemoglobin and ferritin being at the very low end of normal. Maybe I should just set up a hematologist appt myself? I'm so tired all time!

One reason some docs prefer iron infusion to pills: ingested iron may "clump" in the intestines and cause discomfort as a result. That's my gastro's take on it. In any case, I hope you start feeling peppier, Eva Lou. You usually SOUND peppy, though, in your posts! (The sense of humor prevails.) / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

See, I'm a little peeved that my PCP didn't pick up on this awhile ago! I just saw him 2-3 times in January, for a finger MRSA/abscess, but I don't think he did labs at that time. I can't remember, actually. But I had my yearly physical in September of '10, & he did labs then. I'm sure he noticed that my iron levels were low, but maybe figured that since they always are it was no big deal??? Who knows. My GI generally does labs more often than my PCP, & I imagine he is more in tune with things like anemia, iron deficiencies, etc. Just because probably more of his patients are bleeding on a regular basis. If it comes to infusions, I'm sure my insurance will cover it- I have Tufts HMO, & so far they've covered all the pricey meds with no problems. Testing, specialists, etc. I'm sure though that my insurance "file" has a huge red flag on it! yikes. Old Hat, if you lose your sense of humor there's not much more left!

Eva Lou, how are the iron supplements? Has your energy improved?

I went to a hemtaologist--he didn't seem concerned at all. When he got my blood results, he said everything was fine and to start taking a multivitamin with extra iron. Um, I've been taking multivitamins AND OTC iron supplements, and obviously I'm not improving (my ferritin dropped to 15 since beginning of March). ARGH. I told him I want a prescription iron supplement or go straight to iron IV because my quality of life is severely impacted due to fatigue, so he finally prescribed the iron supplement. So frustrating--it shows that we really have to be our own advocates.

I went to a hematologist too and he doesn't seem too concerned about my counts either. They are really low all around. I kept asking if I could feel fatigued from my RBC or HGB but he said no because it is at 11 and it would have to be at 9 or lower to cause symptoms. Still to this day, no one has chcked my ferritin. I always ask, PLEASE check my iron and I never get it checked. I don't understand why they can't just humor me and check it? I have insurance that will pay, I am getting other bloodwork, it is just one more tube.

I am happy you're feeling better Eva. Maybe there is hope for me.

bookworm, do you find that the suplement is helping? Why didn't he let you get an infusion?

Bookworm, that is so frustrating. I can't believe the HGB can be 11 and the ferritin very low. My doctor said that if you have enough RBC and HGB you don't have anemia but I can feel that I do. Thanks for the info. I am going to push for ferritin testing again. I HOPE they listen.