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Scared and confused

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christina31078
christina31078

I am a 39 year old female. I had the Gastric Sleeve surgery almost 3 years ago. During the last three years my primary Dr has told me on several occasions that I was anemic. Well in September of 2017 he sent me to a hemotologist to find out why I was staying anemic. At that point he started me on 65mg of ferrious sulfate 3 times a day which I never took regular. Ok so my hemotologist did so many test. Bone marrow biopsy, 22 tubes of blood, ultrasound, pet scan, Muga scan, genetic testing, and a cat scan. The only thing he found was my spleen was twice the size it should be. Ok so my labs were good, all within normal range except my ferritin was on the low normal range of 20. My iron was normal and my iron sat was normal. My TIBC was normal but on the higher end... Anyway point being that October of 2017 everything was good. So fast forward to February 2018. My hemoglobin was perfect, ferritin dropped to 18 which is still low normal BUT, my iron, TIBC, and iron sat was way high. Iron 351, TIBC 403, and IronSAT 90 %. My Dr didn't say anything about hemochromatosis or that I was in iron overload. He just said stop taking the iron pills and repeat the labs in 90 days. Has anyone else ever had this happen? I haven't really had any issues I don't think. I do get pins and needles in my feet but that's about it. Am I at risk right now or does it take a while to deposit in the organs? With my ferritin at 18 am I even in iron overload? I don't know much about any of this and like I said my Dr didn't seem to concerned, but me, I'm freaking out.

0 likes, 5 replies

5 Replies

  • Jessica1981
    Jessica1981 christina31078

    Posted

    This is my story in which I copied/pasted from a reply in one of my own discussions about my story on getting the HH diagnosis after I was taking iron

    In summer of 2015 I was hospitalized with viral meningitis.  Since then I have had low total white blood cell count, low lymphocytes, and low neutrophils along with chronic fatigue.  Because of the low counts I was referred to a hematologist and basically ruled out any medical cause of the low counts other than possibly medication induced.  During this battery of testing the ONLY abnormality he found was that I had no iron in my bone marrow and basically told me that I will become anemic one day and taking iron wouldn't hurt.  SO, I started taking an iron supplement on top of my multivitamin.   6 months later he ran iron studies and they were a bit high.  He discharged me from his care and told me to have my family doc recheck the iron studies in 6 months.  I stopped the iron supplement however I continued to take a multivitamin.  My family doc rechecked about 3-4 months later and my levels were even worse.   My iron saturation was at 100% that day.  After looking into iron overload and learning more about HH I recalled that there was 1 or 2 things on the "23 and Me" ancestory/gene thing I had done years ago that showed I had a "slightly increased risk of developing" and sure enough one was HH.  I have two C282Y variants.  I immediately notified my family doctor who spoke with the hematologist but it took over a month to get an appointment with him.  I have now seen the hematologist and am beginning the treatment for HH.   

    I too feel like there was a lot of time spent where more damage was probably taking place.  I feel doctors dont work as quick as we would like and where I live there is only 1 hematologist/oncologist and am 4-5 hours away from any other specialists so I don't really have other options.  

    • christina31078
      christina31078 Jessica1981

      Posted

      When your iron sat was 100% what was your ferritin? I'm not understanding why my blood iron is so high but not being stored.

  • Jessica1981
    Jessica1981 christina31078

    Posted

    However now my ferritin is normal.   I could be completely wrong about this but the way I understood it was my ferritin is normal which means it’s not necessarily that I’m taking in any more iron or too much iron it’s just from when I was on the iron in the past my body still hasn’t been able to get rid of all of it but like I said I’m not completely sure that’s kind of the explanation  I took from my conversation with my hematologist but I could be wrong
    • miller.jones
      miller.jones Jessica1981

      Posted

      The body can not clear iron it is recycled so even if you do not have Haemochromatosis with high iron the only way to rid of it is blood loss.

      So yes your numbers should stay the same even if high because a normal person just wont take in anymore iron

       

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