Low hemaglobin and ferratin levels

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Hi, I was wondering if anyone had any information . I have had low hemaglobin and ferreatin for 10 years now. I was under a specialist in the hemaglobin department until last year after my last iron transfusion. They said I don't need to go again! Within 3 months my iron levels had dropped ! All my doctors seem to do is give iron tablets etc. But surely there is an underlying problem as to why this is happening. I do have AF ( heart condition ) and have had two lots of surgeries on my heart in the last 8 months! Also 8 years ago had an iron and blood transfusion! Any information with be grateful x

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2 Replies

  • Posted

    It seems odd that you would be under a specialist care and then they ever so abruptly stop w/ any follow up. Previously, I had a crappy dr who constantly treated the symptoms and I progressively got worse over the years. Thankfully, in Nov. 2016, I got a new doctor who FINALLY decided to treat the problem and not the symptoms. In the past 4 months I have gone to soooo many different doctors, specialist, and had so much blood drawn. Yet, we now know what the CAUSE of the anemia is and are working towards treating that. It will probably, be an ongoing issue, BUT already there is a difference in how I feel in the past month of treating the problem...than the years previously of chasing & treating the symptoms. I would encourage you to do a few things: go to the iron disorders dot org site there are two forms 1.) symptoms log 2.) personal health form. These two form will not only help you, but aid in conscisely conveying what is going on in your body to your primary doctor. The "Symptom Log" form is great because it aids you in realizing how highly affected your body truly is. For the longest time, I just thought it was a bunch of random things going on in my body...until I put it all down. The "Personal Health" form is where you can put the years worth of lab results in one succinct area. It helps for myself to see the progression of my numbers and to give to the doctor as they are normally only comparing your two most recent labs...not looking at the full picture/years of history...or for me 5+ yrs worth of labs. We are our own best advocates and it took me many, many years to learn this and the toll anemia took on me both mentally & physically. Talk to your doctor about figuring out the CAUSE of these low numbers, and why you dropped so quickly after...it very well could be the heart issues or at least that can be a starting point. Also, iron pills don't work for everyone. My body after awhile didn't tolerate them, no matter the formula and wasn't absorbing them. Once, I got switched over to Iron IV it made all the difference. Yet, the switch over happened because I did my own research and found out it was an option. At a doctor's appt, I was the one who brought it up. My doctor initially stated her hesitancy around it...a few days later I received a phone call saying she put the order in. I don't know if or when my doctor would have ever brought up Iron IV as an option. Also, look at what you are putting into your body: caffeine blocks iron absorption and Vitamin C aids in absorption.

    Good luck!

  • Posted

    So after seeing my cardiologist for my heart yesterday he's suggested I go back to my doctors and demand that they look into this more. He said from the blood tests they have done my body doesn't store the iron. So it's loosing it from somewhere. Could be heavy periods or something to do with my gut. He said they should be checking with cameras etc! Anyone else had this

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