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Thread: My Hemoglobin Keeps Dropping!

  1. #1
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    Default My Hemoglobin Keeps Dropping!

    Even with all the infusions I've had my hemoglobin is still dropping. Out of all the blood tests only 3 came back in the normal range! I saw my GP today and she said that it doesn't seem to be working. I took her copies of the weekly blood work results and they show it slowly going down not up. It's at 8 now and I feel awful. She is such a cool doc. I can sit and talk to her like I'm talking to a friend and she doesn't question me or make me feel bad like so many doctors do. I've had some side effects from the iron and she wants me to call my hematologist and tell him so he can get the "better" iron infusion approved by Medicare.

    I had some spots removed with liquid nitrogen by a dermatologist 8 days ago and they still look nasty. She was surprised they still look so bad. Any abrasion I have gets infected and takes a long time to heal.

    I told her what I said to the bully dermatologist about already having a great team of doctors and that I wasn't looking for approval or validation... just for him to look at my spots. She thought that was great and we bashed male doctors for a bit. LOL

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    I have answered you in another post, can't remember where or when.
    You may have missed it. I will tell you again what happened to me years ago.
    At age 24, I was pregnant with my second child and I developed AUTOIMMUNE HEMOLYTIC ANEMIA, my hemoglobin was
    2.6, yes 2.6. I almost died. There was no bleeding anywhere in my body, but the AI was attacking my blood.
    I received 22 blood transfusions in my 7 week hospital stay, but what really helped, was a high dose of steriods, for six months. Two months after my child was born, I was weaned off the steriods slowly. And I was fine ever since, even during my third pregnancy.
    Are you seing a oncologist? If not you need to and ask him about the autoimmune hemolytic anemia.
    I hope this helps.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    GoodDog (04-07-2011)

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    Thanks Debbie. Yes, I have an oncologist/hematologist and I'll ask about that when I go for my next infusion on Monday. Wow, you really had some major problems. I can't imagine having hemo that low!! When I get below 7 I can barely stand!

    They think my bleeding is gastroenteric since I DO have blood in my stool. They just can't find it and think it may be in several areas where the blood vessels have become thin and are leaking. They seem to just be guessing since they haven't actually found anything though. Several specialists discussed my case and that's what they came up with when I was in the hospital.

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    Quote Originally Posted by GoodDog View Post
    Thanks Debbie. Yes, I have an oncologist/hematologist and I'll ask about that when I go for my next infusion on Monday. Wow, you really had some major problems. I can't imagine having hemo that low!! When I get below 7 I can barely stand!

    They think my bleeding is gastroenteric since I DO have blood in my stool. They just can't find it and think it may be in several areas where the blood vessels have become thin and are leaking. They seem to just be guessing since they haven't actually found anything though. Several specialists discussed my case and that's what they came up with when I was in the hospital.
    Yes you are right, I did have problems, plus I was 5 months pregnant. It all worked out though.
    I could barely walk, so I know how you feel. Can you hear your your heartbeat in your ears? I did, it was awful.
    They thought I had uterine bleeding because of the pregnancy, but they checked everything, there was no bleeding.
    My handicap was, all this happened in 1979, technology was not as good as it is today, plus being pregnant, there was alot of things they couldn't do.
    I think you are in good hands, with a oncologist.
    I really hope they can figure it out soon.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Yes, I feel my heartbeat in my ears, neck and in my head. It makes it hard to sleep. If I just walk across the room my heart rate goes way up and my legs feel like rubber. The muscle pain is terrible when you have anemia.

    I bet in 1979 they didn't have a camera you swallowed to see inside your stomach. LOL

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    How are your Hemoglobin levels now?
    Diagnosed with Lupus - 22 June, 2010

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