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  • misleading test results; questions & lessons for all.

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    Old 08-04-2008, 03:04 PM   #1
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    Question misleading test results; questions & lessons for all.

    I wrote last week about being admitted to the hospital and having to get 3 units of blood 2 weeks ago. I'm still fighting to make sure I get the appropriate care but am starting to feel a little better. I went last week to my primary doctor and got more blood work done but it appears that my levels might be appearing as more on the "normal side" due to the blood transfusions. This is what a blood transfusion is suppossed to do yet I am still somewhat concerned that based on these results my doctor may not do the correct thing with my care and therefore I may end up again where I was...

    When I was in the hospital my blood results were:
    Hemoglobin level = 5 (9 after the 3 units of blood)
    iron count = 59
    iron binding ability = 451
    Iron saturation level 13%
    Ferritin level = 1

    The hospital staff diagnosed me with iron defficient anemia and recommended that I follow up with my primary doctor, and get iron infusions and possibly B12 shots (after having the B12 checked) as they felt this was resulting from weight loss surgery that I had almost 5 years ago (gastric bypass) as it did not appear that I was absorbing iron even though I was eating a balanced diet - according to them I could probably eat all of it I wanted and I would still not absorb it.

    I had my blood retested last week at my primary doctor and my B12 was 220 (normal range 200 - 1100) so my doctor said that he wanted to give me B12 shots for a few months but that my "iron level" was good enough so he didn't want to do anything for the next month until it was rechecked. I really was not comfortable with this as I felt like we were just going to sit around and wait for it to happen again not to mention that I have been so sick for the past years and was finally feeling hopeful for something to make me feel better.

    I called the hospital and tracked down the doctors that treated me 2 weeks ago to talk to them regarding my followup care. The main doctor said that if one was to just look at the "iron count" it does look fine but with the binding ability #s, the saturation #, and the ferritin level that it all still added up to iron deficency anemia. For at least 3 years now every doctor I have seen has said "your borderline normal" and told me if I was eating 7 to 10 lbs of ice a day (widely known as PICA from anemia) that it was "in my head" could be explained because my "iron count" is fine but my ferritin etc. was the lowest # that he had ever seen. He told me that this happened gradually and that it was not going to drop back to a 5 blood count in the next couple weeks. He beleived that if it was checked again in a few weeks it would probably be back low again and that the iron infusion would probably be needed then and that the blood I got will hold up for a while.

    DOES everyone else think this sounds reasonable to wait? Any other suggestions based on my blood work etc?

    As a side note to everyone, just know that you do know your bodies better than anyone else and if you truely think something is wrong keep trying to find a doctor and don't give up hope. I am still in a ton of pain every day, still have lung problems, allergies, some depression etc. but I now know what may be the culprit and I will keep searching until I find a doctor to help. I have been pushed aside and ridiculed, been rude to etc. so many times because I was told it was just "fibromyalgia" or just "asthma" or just "the way it is" but this shows that something has been wrong with me for A LONG TIME! Last fall I had to file for intermittant FMLA from work and have missed about 3 months off work since October when I basically had a nervous breakdown because I was so tired and depressed and a nervous wreck from people telling me that it was all in my head or I just needed to go to a psych to help me "deal with the pain" even got so bad that I went to the ER and told them this and told them I was so depressed that I really didn't feel like living any more and that I even considered hurting myself and they sent me home to deal with myself. No one should be treated like this. Never was even so much as a blood test done. I've been to tons of doctors and had my blood drawn (for liver and kidney tests etc.) and I just assumed they were doing a full CBC but apparently not. I am so glad (more than ever now) that I did not do anything to hurt myself and that I called the ambulance and went to the main hospital downtown this last time vs. the local ER. Not everyone gets the help they need but I do know that if we don't insist on it and keep going there is no way we will get it. Sorry for rabling again everyone...I just wanted to let others know that I have been there and maybe give some hope to someone!

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    Old 08-04-2008, 05:19 PM   #2
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    Re: misleading test results; questions & lessons for all.

    He told me that this happened gradually and that it was not going to drop back to a 5 blood count in the next couple weeks. He beleived that if it was checked again in a few weeks it would probably be back low again and that the iron infusion would probably be needed then and that the blood I got will hold up for a while.

    DOES everyone else think this sounds reasonable to wait? Any other suggestions based on my blood work etc?

    Amanda--Yes, this is correct and reasonable. You are going to need IV and B-12 IM's for the rest of your life if you are not absorbing at all. I would suggest seeing a Hematologist for IV iron. I think they are well versed in the different reactions and types of IV even insurance questions regarding this therapy. Your blood won't drop fast, in your situation it is slow. When my ferritin was a 2 and I was unable to take iron supplements my Hgb would drop 1 point in 6 wks, if that helps at all. As you know your ferritin will need to be repleted and that will take several infusions. Good luck to you. FLFLOWERGIRL

    Old 08-05-2008, 05:15 AM   #3
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    Re: misleading test results; questions & lessons for all.

    I don't get it, don't doctors want to find out why this is happening? You can't live the rest of your life feeling tired and depressed, missing out on work and being told it's all in your head and then when you hit rock bottom they simply give you iron infusions.

    Since spending time on the anemia board i have learnt that there are many forms of anemia and some people with anemia have low B12 while others do not, some are anemic, but don't necessarily have bad hemoglobin results etc etc there are so many different categories and situations.

    Since i've found out what my low iron was linked to and then began my research into other areas, i've come across some worrying information. By 'worrying' i mean that doctors are not connecting the low iron/anemia to anything, they just do the basic checks to see why you might be losing iron, but don't really come up with anything concrete, unless it's staring them in the face or better still you point it out to them. I was lucky to come across a doctor who put 2 and 2 together and got me to do a test which i'd never been tested for before, not even by a previous Endo and then found out i had Hashimoto's. It was all pure chance. After spending time on the hair and anemia section of the boards and learning a lot of new things and becoming quite desperate and scared i'd lose all my hair i went shopping for a doctor, armed with all my new knowledge. Fortunately for me i found him. Not sure where i'd be today if i had not. Sometimes i feel as though i owe my life to him. I know that sounds drastic, but when you know something is wrong, but nobody takes you seriously, it can really depress you and make you wish some not nice things so i can understand where you are coming from in that regard.

    You are most fortunate you didn't harm yourself. Dealing with anemia is most often a very long road. Finding out what is causing the anemia is sometimes an even longer road, but there is a light at the end of the tunnel so you can't give up. I know you will feel like giving up a lot of times, but you have to win this battle and show those doctors they were all wrong. I'm waiting till i've stabilised with all my meds and i'm going back to my first doctor and i'm going to give him a lesson on iron malabsorbtion, hair loss and the thyroid. I do not want another patient going through what i went through. If i can help prevent at least one more of his patients going through what i went through i'll feel very happy.

    I'm not familiar with your particular situation, but have any of your doctors tested you for other things to see why you are so low in iron? You are aware that low iron can be connected to such things as gluten intolerance, thyroid issues (too many people on the thyroid board have iron problems and it's linked to Hypothyroid), polyps, ulcers, internal bleeding, digestive disorders. If you are low in iron due to malabsorbtion you can be low in other vitamins/minerals eg: zinc, vitamin D, iodine, selenium, folate.

    Hoping things get better for you soon. This board is a great place to be while looking for answers and even after being diagnosed in my case

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