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  • How bad is my iron deficiency?

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    Old 06-02-2013, 04:54 PM   #1
    ubm9
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    How bad is my iron deficiency?

    I initially found out I had mild iron deficiency about 6 months ago and the GP didn't tell me to take anything. I've been taking floradix on/off (finished a bottle) and redid my blood work with a new GP. The results seem to have gotten slightly worse, but this new GP also just recommended to take a multivitamin. Neither doctor seemed concerned. Anyway, here are the latest results (this new doctor didn't test ferritin; my old result 6 months ago was a 3)

    Hemoglobin - 11 (low)
    MCV - 78 (low)
    MCH - 25.2 (low)
    RDW - 15.6% (high)
    TIBC - 538 (high)
    UIBC - 480 (high)
    Iron Saturation - 11% (low)
    Iron Serum - 58 (normal)
    Vitamin B12 - 348 (normal)

    Anyone know exactly how bad my case is? I am located in NYC; if anyone has a good doctor that takes iron deficiency more seriously, can they recommend the doctor? Thanks so much.

     
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    Old 06-05-2013, 07:40 AM   #2
    Smargie
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    Re: How bad is my iron deficiency?

    I'm sorry I can't answer your question about exactly how bad your case is, but...

    I did want to share that my GP also ignored my anemia for over a year. During that time I also saw a dermatologist and rheumatologist for other problems, and they both commented on the anemia (they had my computerized lab results). The dermatologist actually sent a note to my GP about the anemia! She debated between a referral to a rheumatologist or a hematologist, and went with the rheumy for some reason. I finally just asked my GP for a referral to a hematologist and she complied.

    The hematologist was very surprised when she saw my labs that the GP hadn't ordered more tests or prescribed any treatment for me. My hemoglobin is slightly higher than yours, but my other values are lower...I currently have a ferritin level of 5 and I will most likely be getting IV iron treatments soon. My hematologist said that when you get to single digit ferritin levels it's serious and cannot be ignored. You had a 3?!

    So...my advice to you is to get yourself to a hematologist. I don't know why my GP or both of yours chose to ignore the anemia, but I'm pretty sure it's not right! You need to find out what is causing the anemia and have your ferritin level (among other things) re-tested. I'm confident that a hematologist will NOT ignore anemia, and will know the right tests for you.

    Best of luck to you. I'm sorry you are having a hard time and that your docs have not taken your iron deficiency more seriously. Wish I could help more...

     
    Old 06-05-2013, 08:46 AM   #3
    ubm9
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    Re: How bad is my iron deficiency?

    Thank you so much for your response It's been extremely helpful! I'm about to refer myself to a hematologist for a re-test. Most google searches do in fact show a ferritin of 3 needs treatment, but I have no idea why the first GP didn't do anything. However, do you think it was because my other values were only 0.5 to 1.0 below the normal low ranges? He didn't even prescribe any supplements to take. I just decided to take it myself. I'm not sure if you're near the NYC area at all, but if you are, do you have any recommendations for a hematologist? Thanks!

     
    Old 06-06-2013, 08:22 AM   #4
    Smargie
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    Re: How bad is my iron deficiency?

    I'm in Kentucky, so I can't help you with docs in NYC. Sorry! I hope someone shows up here who knows of good docs in your area. I am SO glad to hear you are referring yourself to a hematologist. I really do think that with a ferritin level of 3 (even if it was in the past) a hematologist will intervene.

    From what I've read on these boards, ferritin goes first, then serum iron, then hemoglobin and hematocrit. I am no expert! I'm just quoting a member of this board who seems to have done a lot of homework. I've read that in other articles as well. So, even if your hemoglobin and hematocrit are just beginning to go below normal range, with yours stores of iron being so low, it seems like those levels would be likely to continue going down.

    Looking through a lot of posts on this forum, I'm seeing over and over again that people's GPs ignore their anemia pretty often. I guess we're only hearing from people with ongoing problems--maybe those with more knowledgeable/proactive GPs don't end up here. I had a hysterectomy 9 years ago and found a support group (HysterSisters) online that was extremely helpful. I learned sooooo much from other women and their doctors! I guess what I'm trying to say is that you have to be your own advocate. You have to keep pushing when a doc (or 2) blow you off.

    As I said before, my hematologist took the low ferritin very seriously. I asked her why my other doc would have ignored the anemia (which was getting progressively worse) and she said she didn't have any idea. She didn't exactly trash the other doc, but she did let me know that she was VERY surprised the GP ignored the anemia. You just never know!

    Also...I've learned that anemia (iron deficient anemia, anyway) is always a symptom of some other problem. You are most likely bleeding from somewhere OR having some sort of iron absorption problem. I obviously don't have periods anymore...do you? And, if so, are they heavy? I've had a colonoscopy, endoscopy, CT scan of the abdomen, small bowel follow through to look for blockages or any huge tumors or polyps....My next step is to swallow a pill camera, which will examine the insides of my small intestines. My GI and hematologist are working together to try to find the source of the blood loss or the reason I don't seem to be absorbing iron. That's a relief!

    Keep pushing and let me know what happens. Best of luck to you...I know this really bites!

    Last edited by Administrator; 05-24-2014 at 05:29 PM.

     
    Old 06-08-2013, 05:00 PM   #5
    ubm9
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    Re: How bad is my iron deficiency?

    Hi Smargie,

    Been researching hematologists in New York and all the highly rated ones seem to not take insurance Is there such thing as a hematologist that specializes in anemia? B/c a hematologist is usually also an oncologist, I feel like seeing them for just iron deficiency is such a small baby case in the realm of their other patients. I don't want to play hypochondriac either or appear that way to them. Since 2 GPs also played down the anemia, I'm not sure if there is such thing to be really be concerned about either. However, I do think I'm going to absolutely see a GP or a hematologist for a retest before the end this year after I've been on Iron supplements a little longer.

     
    Old 06-09-2013, 07:43 AM   #6
    Smargie
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    Re: How bad is my iron deficiency?

    OK, you are now starting to make me nervous!

    Iron Deficient Anemia is NOT a small, baby problem! I don't know enough about hematologists to know if there are some who specialize in treating anemia, as I am new to this anemia world myself. But, I do know that hematologists are specialists in diseases of the blood, and that's what anemia is! If you had a ferritin level of 3 6 months ago and your other current blood levels that indicate anemia are out or whack, you DO need to see a specialist! Apparently, ferritin can takes months or possibly even years to get back to a healthy level. With a low ferritin level, from the research I've done here and other places, your hemoglobin and hematocrit are going to keep going down. It is time to intervene!

    So...Are you saying that the hematologists with good reputations in NYC don't take insurance at all? Or do they just not accept your insurance? Maybe you don't need to see the most hot shot doctor. You live in Jersey, don't you? Are you looking in the city b/c you work there and it's more convenient? Or do you think that the docs are better there? I live in Lexington, KY--not exactly a hub of sophistication!--and have found some really great docs here. And also some who aren't so great, like my GP who kept ignoring the anemia!

    Regarding hematology and oncology....my hematologist is also in the oncology wing of the clinic, with the "chemotherapy suite" just down the hall. From what I gather, hematology and oncology are both subspecialties that often overlap. My BP was a little high at my first visit, and the medical assistant who was taking it laughed and asked me if I'd freaked out a little when I saw the oncology signs, which I guess often happens to patients who have been referred to hematology when they see it's in the oncology wing. She reassured me that my case had nothing to do with cancer.

    GPs often don't take anemia seriously, but hematologists do. Your GP told you to take a multivitamin w/iron, right? Mine didn't even say I needed to do that! However, my hematologist is ready to start IV iron treatments b/c of my ferritin level of 5. She is skipping the oral iron supplementation b/c she wants to get my iron stores up ASAP, and doesn't think I'd be able to tolerate oral iron since I'm already have stomach issues. And, btw, if you are taking an iron supplement that is stronger than just the multivitamin, you are supposed to do this under a doctor's care.

    I seriously doubt you are a hypochondriac. I know it's hard to challenge what a GP (or 2) says, but sometimes you just have to. My husband and I both have other medical issues, and the only way we've received any real help was to do our own research and to talk to others with the same problems. My husband has insulin dependent diabetes and has developed peripheral neuropathy. He joined a support group for people with neuropathy in Louisville (90 minutes from here) and has learned soooo much more from the members of this group than he has from any of his doctors.

    OK. I'll now step off of my soapbox. Oh, wait! Remember that it's also really important to find out what is causing the anemia. I don't want to scare you, but I do want you to take this seriously.

    Last edited by Administrator; 05-24-2014 at 05:29 PM.

     
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