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    Old 06-05-2013, 07:11 AM   #1
    Smargie
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    New and overwhelmed...

    Hello to my new, anemic, cyber friends...so glad to have found you!

    I am 51 and had a hysterectomy 9 years ago, so we know that my anemia is not due to that kind of bleeding. I have been feeling sick off and on for almost 2 years now, though with symptoms not due to anemia as well. Something else is going on, too...I have abdominal pain, nausea, diarrhea, low appetite (but not weight loss), and these weird "brain zaps," which feel like an electrical shock to my head and cut off my hearing for a sec.

    I've had a colonoscopy, endoscopy, abdominal CT scan and a small bowel follow through (which involves drinking a disgusting amount of barium and then getting abdominal x-rays every 20 minutes until it passes through). On 6/19 I will be swallowing a pill camera, which takes 2 pictures per second as it passes through your system. Very high tech! Current theories for internal bleeding are either AVM in the small intestine (abnormal clusters of veins in the wall of the intestine that bleed slowly and cause anemia), Chron's or some other irritable bowel type of thing.

    My GP has been ignoring my anemia for a year now, but I finally got a referral to a hematologist at my request. My numbers aren't good!

    Iron 26 L (30-160)
    Total Iron Binding Cap 408 normal
    unsat. iron binding Cap 382 H (110-370)
    % Saturation 6 L (15-50)
    Ferritin 5 L (13-150)

    RBC 3.95 L (4.00-5.20)
    Hemoglobin 10.7 L (12-16)
    Hematocrit 32.1 L (37-47)


    There is a question in all this! The hematologist said "Whenever you get to single digit ferritin..." then kinda trailed off. Strangely, I'm to take a Flinstone vitamin w/iron (?!), will go back and see her after the results of the pill camera, on 7/1, have a blood draw an hour before the appt., and then most likely be set up for IV iron treatments.

    I understand that ferritin is stored iron and that it gets depleted if you don't have enough iron in your blood. I don't understand why the ferritin is so low when the other numbers are not super low. I guess I don't quite get the relationship between low ferritin and anemia... Does it mean my other numbers are going to go down quickly and I'm going to feel worse?

    I have many more questions, but I won't make this any longer. Thanks in advance to anyone who can shed some light on this ferritin/anemia issue. Also, anyone else have AVM as a cause for their anemia?

     
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    Old 06-08-2013, 01:09 PM   #2
    Heatherx5
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    Re: New and overwhelmed...

    Ferritin is evil! This number is the first to go with anemia because it's your iron stores and when you are running low on iron that is where it comes from. So your body is pulling from the ferritin to restore iron serum. If that makes sense? Ferritin are your reserves....so when your iron serum becomes low your reserves are being sent out by your body once you start running low on your reserves the problem starts...

    All the side effects you have mentioned are related to or can be related to anemia, they are terrible! I would also strongly suggest getting your B12 and D levels checked as well because they are some things that seem to go hand in hand with anemia.

    You can have a normal hematocrit and still be anemic and that number alone should not be relied upon for diagnosing an anemia problem because it's not one of the first things that starts to drop. Your numbers are starting to go down quickly because your starting to run out of your reserves.

    Anemia is just a symptom of a larger issue, which I'm sure you are well aware of. You need to be treating, a Flinstone vitamin isn't going to fix this!

    If you get infusions your numbers should go up quicker then taking a pill but at this point a F. Vitamin is not going to be near enough of what you need. Ferritin can take months and even years to fix depending on the problem, if it's being treated etc. I'm going on taking iron for over a year now and my problem has been fixed. I'm glad you have a hematologist to help you.

    Last edited by Heatherx5; 06-08-2013 at 01:10 PM.

     
    Old 06-12-2013, 08:04 AM   #3
    Smargie
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    Re: New and overwhelmed...

    Thank you so much for your response, Heatherx5, it was very helpful. I think I read somewhere that when the evil ferritin gets low, your body can no longer produce iron. Does that make sense? Or is iron received only from the diet?

    My hematologist thinks I have more going on than just the anemia, with all the stomach issues. I will ask about the B12 and vitamin D issue. I did once get so low on Vit D that I had to have a prescription for it.

    Regarding the Flintstone vitamin...I'm thinking the hematologist suggested that for insurance reasons--to document that she tried to treat the anemia orally so that she can get the iron infusions approved. I don't know that for sure, though. It does seem odd! She did also say that she didn't think I could tolerate iron supplements with the digestive issues I'm already having.
    It sure would be nice if an increase in my iron levels solved my other issues, though.

    Thanks again!

     
    Old 10-11-2013, 04:07 PM   #4
    Cleopattra
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    Re: New and overwhelmed...

    Hi, im new to this to. I've been diagnosed with iron anemia also. I've had every possible test even swallowed the camera. Dr,s say all is fine. But it's not. I don't know why I have no iron. I got down to almost zero. Did you get results from the camera? With 50,000 pictures you'd think they would see something.

     
    Old 10-12-2013, 07:51 AM   #5
    Smargie
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    Re: New and overwhelmed...

    Yes, I did get the results--nothing was found. My hematologist thinks that I had an internal bleed at some point that corrected itself on its own. I am now no longer officially anemic, but am still working on building up my ferritin (it's up to 26 now)...she thinks I'll start feeling better sometime in December. My original post was in June, so I've had 4 months to work on it.

    I'm sorry you are having such a hard time--it's so difficult when the doc tells you there's nothing wrong and you KNOW that there is! Are you seeing a hematologist? Are you getting any treatment for the anemia? If not, I suggest finding a hematologist ASAP, as they seem to be the only docs that take it seriously.

    It seems strange, but I got my iron up pretty quickly by just taking 2 Flintstone vitamins a day. My hematologist said that after she had her last baby she lost a lot of blood. She refused a blood infusion, and her OB had her take Flintstone vitamins to build her iron back up. Since then she has recommended this to her patients w/anemia since it worked for her. She said that about 60% of her patients cannot tolerate heavy doses of iron, and that much of that iron is not absorbable anyway, whereas the iron in the vitamins is. So...it couldn't hurt for you to try it!

    Best of luck to you--keep us posted!

     
    Old 10-12-2013, 05:45 PM   #6
    Cleopattra
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    Re: New and overwhelmed...

    Thanks. Glad your better. I'm on my way I hope. He has me taking iron twice a day. I've never thought of going to a hematologist. I see the gastro doc Monday about the camera test that he says was all good. How can it be all good when he say I had to be bleeding from somewhere. The flinstone vitamin is funny but glad it works.

     
    Old 10-21-2013, 07:08 AM   #7
    Smargie
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    Re: New and overwhelmed...

    So, what did the gastro say? If he already told you that nothing was found w/the pill camera, I'm curious to know what your discussion was about.

    Do you have heavy periods? That could be another obvious cause for anemia. Also, it could be that you had a gastro bleed at some point that has cleared itself up on its own--that's the theory for what happened to me.

    How often do you get blood tests? Are your numbers going up at all? Is your body able to retain any of the iron that you are taking? I would definitely see a hematologist if I were you. Since they specialize in blood disorders, they are more likely to order the appropriate tests, and to keep digging for a cause for your anemia.

    I hope you get to the bottom of this!

     
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