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Serum Ferritin started raising durin venesection treatment

Posted , 4 users are following.

richard19051
richard19051

Hello

After a Liver biopsy that suggested no damage I started venesection in late April with a ferritum level of 660. The Ferritin level was dropping consisitently until last month. It reached 156 then over the last month despite four sessions it has risen to 191. Has anyone else experienced this reverse? 

The venesection frequency, my diet and general life style havent changed much.

It would be great to hear from anyone who has experienced the same 

1 like, 11 replies

11 Replies

  • hemopatient123
    hemopatient123 richard19051

    Posted

    Although I am still in midst of my venesections and not checking as often to know, I will say that I checked my baseline Feritin twice, prior to starting venesections. That resulted in two different Ferritin numbers that similarly perplexed me. Figures were 919 and 812. This was within 2 weeks of each other and I had not lost any blood or changed anything. Summary: Ferritin is not an exact figure and can be 15-20% different (error factor?) when testing it. Your test a month ago may have actually been higher but the error factor applied (or vice versa).
  • richard19051
    richard19051

    Posted

    I know what you mean. The first test several months before a final assessment was made showed a Ferritin level of 1000. By the time treatment had started it had dropped to 660. During that time I had lost a stone and stopped eating too much saturated fat.

    For interest ive attached a graph that shows the progress of the treatment. sorry about the quality but i created it on Excel and turned it into a jpeg by iphone. Ironically it dropped the most when i was on holiday for three weeks without venesection!

    Very confusing!

    • hemopatient123
      hemopatient123 richard19051

      Posted

      Interesting. Did you have symptoms and anything go away? I retested Ferritin after 2 venesections (went from 812 to 616). Haven't tested again yet (I just completed my 6th). I am going weekly. My symptoms were palpitations and tachycardia, along with facet joint pain (in spine). Tachycardia and palpitations stopped after my 3rd venesection. Very happy. No resolution of facet joint pain tho
    • richard19051
      richard19051 hemopatient123

      Posted

      I do feel much less tired and less achy in the abdomen area since the Ferritin dropped, which were my original symptoms. Ive also noticed my hands dont go numb whilst sleeping anymore. Im not sure if the latter has anything to do with Ferritin. 

      Trouble is I got my weight into the middle of the BMI "good" range, sorted out my Triglycerides, sgtopped drinking during the week (except holidays) and started venesection all at the same time so I dont know whats done what towards the improvements.

      I actually first went to the doc's as after six months of quitting smoking I didn't feel any better and the doc had said the tiredeness and aches were caused by the smoking and would go away after a few months.

       

    • hemopatient123
      hemopatient123 richard19051

      Posted

      Wow. When you mentioned the hands going numb during sleep, that made me realize that this is an issue that has gone away for me as well. I did not initial associate it with HH but it likely is in some ways given that we both had this and has since resolved with decent level of phlebotomy.
    • richard19051
      richard19051 hemopatient123

      Posted

      Ive heard that Ferritin can rise during treatment as iron is released from the organs so hopefuly thats why mines going up as it reaches the maintenance stage.

      Im seeing a consultant next month but hes a liver specialist and as my Liver doesnt seem to be damaged Im not sure who will give me advice from there. does anyone know?

    • sheryl37154
      sheryl37154 richard19051

      Posted

      Unfortunately, we are mostly on our own there.  Even haemotologists don't know much about haemochromatosis.  And Medical professions do not subscribe to all our issues as they have not been proved by scientific studies.

      Best bet is to contact your country's HH assoc and talk to them.  See if there is a support group near you where you can talk to othes who may have some answers by experience.  If none around, start one yourself, which I did, as there are many people with HH, mostly at a loss of assistance same as you.

      Avoid biopsy that liver specialists like to do - it is not necessary, and stick to haemotologists for blood level monitoring.

       

    • cathy09821
      cathy09821 hemopatient123

      Posted

      This was also a wow for me -- my hands have gone numb at night for probably 15 years now, and doctors never had a clue what it was from.  I'll look forward to having it stop happening!
  • sheryl37154
    sheryl37154 richard19051

    Posted

    Any infection, inflammation, even a simple cold can cause an increase in ferritin.  Also eliminate sugars and starches to reduce weight and to be kind to your liver.  Consume good oils.

     

  • cathy09821
    cathy09821 richard19051

    Posted

    Hi Richard,

    I've had the same experience. Ferritin level started at 610 and then dropped and dropped as I went for treatments and adjusted my diet. Then at about 265 I hit a plateau and the levels rose up and down between 265 and 300 for the next 4 treatments.  Very discouraging, especially because my Hemoglobin DID fall and I had to take a break from the venesections for a few weeks to get it back up.  Long story short: I ended up exploring mindfulness and meditation (on advice from my doctor, who seemed to think I needed to relax and accept things more -- not really my style!).  All I can say is without really changing my diet any further my Ferritin levels have started to fall again (now at 178) , and the only thing I can point to - other than just allowing time to pass - is the meditation. 

    Someone else in this thread has mentioned that inflammation can make Ferritin levels rise, and knowing that stress can cause an inflammatory response I'm thinking this may be the reason I am seeing these results. In your case if you had a cold or other illness that could also have an impact.

    Thank you very much for sharing your experience.  It's a great relief to know that others have similar issues, and hear how they resolve!   

  • sheryl37154
    sheryl37154 richard19051

    Posted

    Also, check if you are taking any supplements that contain milk thistle - it is bad for our livers for us with haemochromatosis and sometimes makes venesections ineffective.  If you google milk thistle and iron overload you are likely to find a study on this.

    After 25 years of venesections, I have finally found 1 x 100mg of aspirin per day makes a big difference in effectiveness of venesections.

     

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