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  • Hemoglobin keeps dropping

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    Old 02-25-2011, 07:17 AM   #16
    ajpa
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    Re: Hemoglobin keeps dropping

    Just fyi, when you have your blood drawn, you can tell the lab right there that you want a copy of the results, and they will make you sign a form and then mail a copy to you. Just sharing that because I just found out recently -- now I don't have to beg my dr for a copy!

     
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    Old 02-25-2011, 07:54 AM   #17
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    Re: Hemoglobin keeps dropping

    And once you start seeing a hematologist regularly, you will get to know the nurses. My hematologist left the state, but I stayed with the practice because the nurses are just wonderful. They know their stuff - especially with any treatments you receive regarding side effects, etc. and they are usually the ones you speak to if something happens between appts.

    Good nurses make happy patients.

     
    Old 02-25-2011, 12:31 PM   #18
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    Re: Hemoglobin keeps dropping

    Thanks! I go to the hematologist Wednesday...I am very anxious!

    Ended up at my doctors office today because of a swollen place on my wrist, same arm where my iv was in my hand. Doc said its phlebitis and sent me home with meds...

    When it rains, it pours!

     
    Old 02-25-2011, 12:37 PM   #19
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    Re: Hemoglobin keeps dropping

    You may already know this, but always plenty of drink water 45 minutes before a blood draw - it makes it easier to get your veins. And heat on the arm before helps too.

    Don't be nervous about visiting the hema. Just think of it as one step closer to finding a treatment that will make you well!

     
    Old 02-26-2011, 07:26 PM   #20
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    Re: Hemoglobin keeps dropping

    Ladybug;

    Please keep us posted on this topic. I am undergoing a similar issue, and I am very curious to hear your diagnosis. I was perfectly healthy about three weeks ago (running almost daily, feeling pretty good). The next thing I know I was dizzy all the time/fainted, etc.

    The first time I went to the hospital I was admited with a 6.5 Hemoglobin level and had two transfusions. I left the hospital with a 10.9 and in four days dropped again to 7.7 (where I was again admitted and had another transfusion and an IV Iron Transfusion).

    The doctors believe it to be Iron deficiency anemia (my hemotocrit levels have been between 20 - 30), but they can't find any bleeding anywhere (2 endoscopies, 1 colonoscopy), my stools have mostly been negative. My initial bone marrow test so far has shown no indications as to why I have no red blood/iron.

    I am getting the results of my capsule test for the small intestine next week and going back to the hematologist for the full bone marrow results. If it isn't internal bleeding or a bone marrow issue I don't know what to do next-- the docs are clueless on what it could be (celiacs was ruled out too).. I just can't move on with my life like this (so tired), so its very frustrating.

    Anyway - all the best to you, but please keep us posted -- your levels seem really low, so please take care.

    I hate anemia too!

     
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    Old 02-26-2011, 08:24 PM   #21
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    Re: Hemoglobin keeps dropping

    Quote:
    Originally Posted by joawhite View Post
    Ladybug;

    Please keep us posted on this topic. I am undergoing a similar issue, and I am very curious to hear your diagnosis. I was perfectly healthy about three weeks ago (running almost daily, feeling pretty good). The next thing I know I was dizzy all the time/fainted, etc.

    The first time I went to the hospital I was admited with a 6.5 Hemoglobin level and had two transfusions. I left the hospital with a 10.9 and in four days dropped again to 7.7 (where I was again admitted and had another transfusion and an IV Iron Transfusion).

    The doctors believe it to be Iron deficiency anemia (my hemotocrit levels have been between 20 - 30), but they can't find any bleeding anywhere (2 endoscopies, 1 colonoscopy), my stools have mostly been negative. My initial bone marrow test so far has shown no indications as to why I have no red blood/iron.

    I am getting the results of my capsule test for the small intestine next week and going back to the hematologist for the full bone marrow results. If it isn't internal bleeding or a bone marrow issue I don't know what to do next-- the docs are clueless on what it could be (celiacs was ruled out too).. I just can't move on with my life like this (so tired), so its very frustrating.

    Anyway - all the best to you, but please keep us posted -- your levels seem really low, so please take care.

    I hate anemia too!
    I will be sure to kee you updated! Im sorry you're experiencing the same thing

    I was also negative for celiac and I'm waiting on bone marrow results to come back - I should find out about those Thursday when I have my next CBC. I'm praying my iron has held its own but I have a horrible feeling its low again..just by the way I feel...and last night my stomach was hurting really bad, noticed blood in my stool later that evening. I notified GI of this and hes considering another colonoscopy if it happens again. I really dread that!

    Its hard to think I have to live like this, quite depressing actually! I am absolutely miserable and I feel like nobody in my family understands just how bad I feel. Just because I dont look "sick" doesnt mean I dont feel bad! At the hospital I was sitting in my chair and a nurse came in and looked at me strange, asked where the patient was then proceeded to ask me to raise my arm so she could see my wrist band. I guess I didn't look sick enough to be there! Haha.

    I hope we both get answers soon!! I hope you feel better!

     
    Old 02-27-2011, 04:20 AM   #22
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    Re: Hemoglobin keeps dropping

    Ladybug -- Lots of hugs.

    I hope you keep you hg higher, hopefully they figure yours out soon!! Have they/will they do the capsule test (they actually put a camera in me to take pics of the small intestine) - I think it can help look and see if there is an issue with absorption/bleeding within the small intestine. It also takes pictures of the stomach and colon as well.

    I am sorry about the misunderstanding with you docs, etc..It seems like my PCP (whom I do like) feels that once my iron is up - I am good to go and things will just heal themselves - I keep insisting that there has to be a root cause. Very frustrating if others feel the same way as well.

    All the best !!

     
    Old 02-27-2011, 06:45 AM   #23
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    Re: Hemoglobin keeps dropping

    joawhite,
    Are you seeing a hematologist? Do they know your hemoglobin problems are a result of blood loss? Because it is possible that it's something else - like autoimmune. My hemolytic anemia presents the same way - and after transfusions, my hemoglobin rose but then crashed because my immune system saw the transfused cells like enemies and ate them all. The only thing that could get it all calmed down was an immuno-suppressant, Prednisone. Until they stopped the red cell destruction, all the iron in the world wouldn't help.

    Anyway, it may be something else, but I think a hematologist should be driving this bus!

     
    Old 02-27-2011, 07:38 AM   #24
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    Re: Hemoglobin keeps dropping

    japlopper;

    I do have a hematologist now. My initial bone marrow results looked good (quote "You should be creating red blood cells") -- I have a full appt. with hematologist later this week with the full results (that are not ready yet). I will definitely ask about autoimmune issue (thank you for the insight) - in fact, my hematologist was just starting down that route b/c he was starting to think that my issues could have been a result of a bad flu I had about two weeks before this all started.

    I just find this whole thing so odd (like the OPs/Ladybug's case) b/c it came on so suddenly- its helpful being on this board though to see if there are other causes to look into, and what questions I should continue to ask the Doctors. I can't believe some poster are out of the hospital with <7.0 levels -- I felt like I was having a stroke with a 6.5 hgl!

     
    Old 02-27-2011, 08:17 AM   #25
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    Re: Hemoglobin keeps dropping

    Oh yea, I know what you mean. When I was at 7, I couldn't lift my arms above my head without getting the "I'm going to pass out" dots.

    My hemolytic anemia started when we got a new mattress. They think it was the chemicals. I went from fine to near liver failure. When you have hemolytic anemia, your immune system bursts your red blood cells, and the liver cleans them out of your blood stream. Well, when there's more than your liver can clean, you get jaundiced. I was daffodil yellow. My doctor was scared. When I went to the bathroom, it was tea colored - again a sign of the red blood cells that weren't being cleaned out of my system. Also I had twitches, zaps all over my muscles. That was because red blood cells carry B12 and when your red blood cells are being destroyed, they can't carry B12 correctly. So, yeah, I was a mess.

    Oh, and BTW. One of the blood tests they do is a retic count. It measures how fast cells are being created. If your retic count is high, it means your body is pumping out cells to counteract the destruction. The other value is your LDH liver level. NOt to be confused with the LDL. When my hemoltyic anemia was active, my LDH was five times the normal value. A big indicator that hemolytic anemia is active.

    Are you nauseous? I was so sick at my stomach. I lived on Sprite and crackers, which I'm sure didn't help things, but I couldn't eat.

     
    Old 02-28-2011, 06:04 AM   #26
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    Re: Hemoglobin keeps dropping

    *My hemolytic anemia started when we got a new mattress.*

    Holy cow, what kind of mattress was it?!

    Last edited by ajpa; 02-28-2011 at 06:04 AM.

     
    Old 02-28-2011, 06:29 AM   #27
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    Re: Hemoglobin keeps dropping

    It was one of those memory foamed topper mattresses. It smelled so terrible -- it gave my husband a headache, and when we called the store to report what had happened, they refunded our money and picked it up for free without a single protest, making us wonder if they'd had similar complaints from others...

    I don't think it was the mattress itself, rather the chemicals they use to make them fire-retardant. There's a slew of research on it. Some pretty scary chemicals are used.

     
    Old 03-02-2011, 01:40 PM   #28
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    Re: Hemoglobin keeps dropping

    Just a little update from me...

    My MRI showed signs of atrophy and increased fluid on my brain so next week I am having a spinal tap. The PA at my neurologist said the MRI notes also stated that they needed to run a CBC to check for anemia, apparrently there were signs of it?

    Could my hemoglobin dropping to 5.4 have had any kind of effect, oxygen wise? My doctors were surprised I could even walk and quite honestly, I wonder how I did!

    I go to the doctor tomorrow for lab work, I pray for high numbers!

     
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    Old 03-02-2011, 02:01 PM   #29
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    Re: Hemoglobin keeps dropping

    Ladybug -- please keep us posted, fluid near the brain is quite a scary diagnosis. Yikes !

    5.4 HGL, I think is very low -- I was very surprised you were not in the hospital with that level !!

    I had my attack when I was at 6.5 (I feel to floor and couldn't get up, w/my heart pumping like mad). I called the ambulance to pick me up and in the ER they wanted me to get a blood transfusion as soon as possible. When HGL gets too low you are at risk for Organ failure and possibly a stroke b/c your blood is not pumping through your body properly (my sis-in-law is a nurse practitioner and that is what she said, but I am in no way a Dr !). I know I kept having fainting/dizzy spells when I was in the 7-8 range.

    I am sorry you are going through this -- its so frustrating and scary ! Luckily my numbers seem to be on the upswing, so I will hope that this continues not just for me, but that the same happens for yourself and others on this board !!

     
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    Old 03-02-2011, 02:12 PM   #30
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    Re: Hemoglobin keeps dropping

    Yes 5.4 is very low, as is 6, my gosh. You guys are troopers.

    I know that at 4-5 they start worrying about cardiac issues.

    One thing I will say is that I went from feeling very ill and having horrible test results to being just fine. So remember, that things can look ugly, but may have a very easy fix and a good outcome.

    I had an MRI and a guided MRI biopsy, and I was terrified. Those tests sound so scary, and the fact that they found suspicious lymph nodes scared me sensless, but it all turned out to be nothing scary.

    So keep a good thought, and take care of yourself. Rest as much as you can, which I realize, is a tall order because a racing heart makes it hard to sleep, but try.

     
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