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  • Seeking info about severe anemia (treatment options)

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    Old 03-19-2009, 08:43 PM   #1
    GypsyZale's Avatar
    Join Date: Mar 2009
    Location: Dallas area
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    GypsyZale HB User
    Question Seeking info about severe anemia (treatment options)

    Hi. I'm needing to find some good info on severe anemia treatments.

    My info: 34 years old female. Multiple Sclerosis, Fibromyalgia.
    Had gastric bypass surgery in 2004, so I don't absorb pills.
    Have a bleeding ulcer so I can't take iron pills.
    Required two blood transfusions - last one in October. Blood was 7.2.
    Take B12 shots twice a week.

    My current H is 10.0, which is low but not dangerously low.

    After I spent 3 days in the hospital in October, I was to begin iron IV's. It was the only way to keep my anemia under control. But we ended up moving 2.5 hours away and I had to find all new doctors.

    I'm now in a small town and don't have access to all the great healthcare and hospitals I had in Dallas.

    I saw a new PCP last week (small town doc). He did some blood work (the H 10.0) and told me to "take iron pills."

    Now, I've told him three different times now:
    1. Gastric bypass surgery - don't absorb pills
    2. Bleeding ulcer - iron makes the ulcer bleed more!
    and 3. Without some kind of plan in place, I WILL need another blood tranfusions, which I'd like to avoid.

    His response: Well, take the iron pills with food.

    OMG - I take sucrafate and nexium and still drink malox by the bottle because of this ulcer. Simply taking the iron with food will not fix the problem. Let's assume for a moment that we could somehow get iron that wouldn't irritate the ulcer, I still won't absorb it! I don't absorb!

    So, I'm kind of on my own here. I need to really advocate for my health.

    Before I moved, the PCP and the gastro-enterologist both told me iron IV's would be necessary. The oncologist they brought in to consult agreed that they were necessary. While I'd rather avoid the high risk of iron IV's, I would like to avoid another blood transfusion more!

    Any suggestions or advice? I'd sure love to have it.

    Oh, and I guess it goes without saying that my hair is falling out. My fingernails are flimsy, peeling and won't grow. My fatigue level is unbearable. I have severe tachicardya secondary to anemia. I have passing out spells from the racing heart/dizzy spells.

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    Old 03-19-2009, 10:44 PM   #2
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    Join Date: May 2007
    Location: FL
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    Re: Seeking info about severe anemia (treatment options)

    GypsyZale--Welcome to the boards!

    I am no doctor, just a dumb patient, but I do have some experience (myself and family members) with a few of the things that you are speaking of.

    At a 10.0 Hgb you are borderline mild moderately anemic right now. Your main goal is to get iron, you need to see a Hematologist/Ongologist that understands these things. I would get a referral right now and just a consult to discuss iron options. You didn't say what your ferritin is, although you gave great info. which really helps. That is your best bet for IV iron, which is usually used in GB patients that are not absorbing enough, and I understand this is different with the different procedures.

    Here's my next comment. My sister also had gastric bypass and does take a special formulated iron that is absorbed in her case, but I can't remember what type of surgery she had. Anyway it is Foltrin; it contains Iron with Vit-C and B-12 with IF Intrinsic factor for absorption. She also get the B-12 IM's too. This is a script and I am unsure if it comes in generic forms/names, probably does. Anyway, with your numbers you could easily try this first to see if you could absorb it, and still be safe enough to have IV if necessary. I also don't think that this is a harsh iron. If it doesn't work then you have to see a Hematologist for IV, you have no choice. This would be a lifetime maintenance for you.

    Also, your ulcer should be healing and if not then you should try to change your meds. Have you been tested for H-Pylori too? Nexium is not always the best thing to take. I have had to change from that (which causes my malabsorption of iron for me) to Zegerid which I feel is a much better drug for healing. It's so worth a try. You should not have to drink all that stuff you need better healing if this is the case.

    You may need to change doctors and/or put your foot down and demand help. That's my best advice. Take care and keep us posted.
    Best of luck to you! FLFLOWERGIRL
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    Hashimoto's Thyroiditis
    Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
    Fibromyalgia/Chronic Fatigue Syndrome

    Old 03-20-2009, 08:34 PM   #3
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    Location: So. California
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    Re: Seeking info about severe anemia (treatment options)

    Hi GypsyZale.

    I agree with FLFLOWERGIRL. If it were me, I would drive the distance, to get the help I need. I have house in Idyllwild, and everywhere is a Hour and Half drive to anywhere, so I am use to driving.

    But I had iron infusion and the new ones are called 8 minute, it's an 8 min. push.

    I don't have all the extra things you do, but the iron infusion, was not bad at all.

    I had the same kind of iron they use in 8 min. push.

    Of course I'm new to all this. Just started in Jan. this year.

    I will be praying you find the right course of treatment and a doctor That understands
    your needs.

    Hugs, Dianaro42

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