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De-ironing complete!

Posted , 4 users are following.

hemopatient123
hemopatient123

Today I got my blood results. My ferritin is now 87 after 9 venesections. It was 919 to start. Very happy.

My saturation % dropped to 27% from 50%.

I'm feeling better and my symptoms have mainly resolved, except my back pain.

I am compound heterozygous (H63D/C282Y) but also have a pending genetic test for non-HFE mutations as well.

There is hope for any of you recently diagnosed!

1 like, 6 replies

6 Replies

  • Mrs._Z
    Mrs._Z hemopatient123

    Posted

    Oh boy, that is so good to hear and congratulations!  Also, recently diagnosed, only had two venesections (the first one didn't count since they were only able to get about 50ML) and yesterday was my second which was more successful.  I was at 923, but after first venesection went up to 969 which was very disappointing,but now you've given me some faith.  Thanks for the positive feedback.
    • hemopatient123
      hemopatient123 Mrs._Z

      Posted

      Thanks. I doubt you went up. I retook my ferritin before I started and it was 100 lower. It's volatile while its high because some of it is inflammation caused by the iron storage in your liver. So your starting figure was probably closer to 1000
  • terrihigashi
    terrihigashi hemopatient123

    Posted

    I had to go alot further than you, I went from 1675 to 33...feeling much better also. Not so hot. Hair is getting thicker. Also, found that some blood donation places will take the blood of HH patients, so I am going there next month and help someone else! Glad yours was caught in time. How was it discovered?
    • hemopatient123
      hemopatient123 terrihigashi

      Posted

      I was searching for a diagnosis for over a year for a pounding heart and tachycardia. My aunt told me she was a carrier not even knowing I was having any trouble. So I got tested and had both mutations. Both of those symptoms are now nearly gone, although not fully. My next issue is to solve my high MCV which is likely contributing to the remaining pounding heart issue.
  • haircrazydaisy
    haircrazydaisy hemopatient123

    Posted

    Hi, I'm also compound heterozygous (H43D/C282Y) and have two venesections, so far.  My levels, like Mrs. Z, also have gone up.  The consultant said this is quite common - the iron that has already been stored in the organs starts to be released after the first few venesections, apparently.

    My levels are slightly raised (becoming more so!) but I had the stomach/abdominal issues and many other symptoms so it was decided to get the levels down to below 50 to prevent more damage.  

    Glad to hear that you're doing well.

  • Mrs._Z
    Mrs._Z hemopatient123

    Posted

    Everyone is different with the reductions of the iron levels.  I have to admit I was disappointed after the first venesection (after only getting 50 ML) and my level went up especially when I was reading every label and eating foods containing lower iron levels.  After my first true vensection, and a week's vacation before having my blood drawn, I was delighted that my levels went down by 304 points!!

    Hopefully, I'll continue to see such remarkable reductions.  Keep the faith.

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