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Ferretin Testing

Posted , 5 users are following.

paminutah
paminutah

Hello, I'm currently getting my plebotomies once every three weeks.  I started with a ferretin of 580 and after one treatment it went down to 476.  I just completed my third.  How often do they usually check your ferretin levels.  I'm following up with my hematologist in June to go over progress, but was just wondering if it's standard or not to check ferretin levels every time they draw before my plebotomy.  My red cells are low, so may have to back off a bit.  Feeling good though.

1 like, 9 replies

9 Replies

  • Mr_L
    Mr_L paminutah

    Posted

    With me they would take sample of my blood just towards the end of the each venesection (phlebotomy). I believe it takes 2 or 3 days depending on the facilities at the hospital to get the ferritin level. However, I would normally be told that result 2 weeks later when I went back for my next venesection. Obviously by then my actual ferritin level was likely to have changed as a result of the venesection 2 weeks before so it's not easy to get your head around the time lag.

    However, my hospital is able to test your Haemoglobin level pretty much instantly so there was one occasion where they did this before commencing a venesection as they could see the Haemoglobin level was low 2 weeks before. I was fine so they then proceeded to take blood.

    • paminutah
      paminutah Mr_L

      Posted

      That's exactly how my lab handles it.  They check my haemoglobin before my venesection.  I just assumed they always included ferretin with that.  The test would at least give me an idea where I was prior to my plebotomy 3 weeks ago.  A little confusing...but I'm getting it.

       

  • helenemiles
    helenemiles paminutah

    Posted

    Hi 

    I usually have my levels checked every 8-12 weeks just before my haematology review .

    my levels started over the 1000 😬 

    I have had venesection 4 weekly , with positive declines .

    I am now at 200 which is really good .

    The aim is to drop to 50 or below then consider a maintenance plan .

    At times it's been hard for the blood to drain due to the stickiness off the blood and usually my blood pressure drops quite dramatically . I have found that I don't feel to good on the evening of my venesection ,but usually feel ok the day after .

    glad to hear that you are feeling well 😀

    Best wishes 

    Helene 

    • paminutah
      paminutah helenemiles

      Posted

      My blood takes forever to drain...She did tell me men tend to lose it quicker than women due to vein size.  I got a horrible migraine following my 2nd venesection, but breezed thru my 3rd.  Went hiking in Zion the next day.  All was good.  I bet they will run a test at my next visit in May so they have it for my review in June.  The goal they set for me is 50 as well.  Thank you.
    • helenemiles
      helenemiles paminutah

      Posted

      Your very welcome 

      I had no idea that I had the genetic hemachromostasis ...

      I had so many different symptoms and felt unwell for about 18 months 😬

      It was only last April when my body felt as if it had been taken over by aliens that I was admitted to hospital .

      it was the comprehensive tests that the rheumy carried out that I was diagnosed ... Along with PMR , extremely low vit D and severe osteoporosis.

      the last 12 months has been a bit of a journey really ... 

      On a positive at least I was diagnosed and treatment started very quickly .

      my father also died very young (56) without any prior medical concerns , mum followed at the age of (60) 

      i wonder now if they too had the disorder but because undiagnosed possibly contributed to their early deaths .

      I do now feel very grateful that I was fortunate to be diagnosed .

      my 3 children now need to be tested .

      helene 

    • paminutah
      paminutah helenemiles

      Posted

      My mom has diabetes and my dad had horrible arthritis and liver issues, but lung cancer inevitably took him in the end.  He had years of pain though.  Retired early etc.  Makes me wonder???  Mine was diagnosed during cancer treatment but didn't require treatment until this year.  It just so happened my oncologist was very interested in my diagnosis as it ran in his family.  I'm asked my daughter, who is now 21 to get the test done.

       

  • Mrs._Z
    Mrs._Z paminutah

    Posted

    I'm in the US and have had weekly phlebotomies.  My levels were almost 1000 when I began and after about 16 phlebotomies got down to 41.  I had my ferritin test done a day before the weekly phlebotomy as well as the CBC (which shows the hemoglobin and red blood cell results.   The center will call to let me know if I still had to come in for the phlebotomy.  I am currently on a maintenance program (so every three months).  Prior to seeing the Dr. I will have the ferritin, CBC and CMP blood tests and hopefully I won't have to have phlebotomies.  However, I am planning on donating blood sometime next month prior to my visit to the hemotologist.

    My Dr. said when I had an issue with low hemoglobin that it was due to the phlebotomies and it would come back (which it did).  At that time Ii was able to skip a week because I felt really tired.

    All the best to you as you know we are all a little different with this condition.

     

    • paminutah
      paminutah Mrs._Z

      Posted

      That is what I am learning as I go.  It's very unique to every person.  My mother is having her ferretin checked as I am compound, which I think means that both of my parents were carriers.  My dad has since passed, but my mother was anxious to see if her levels were in normal range.  Thanks for the input smile
  • Mrs._Z
    Mrs._Z paminutah

    Posted

    Your Mom may be a carrier only and not have the condition as far as I know, but it would be interesting to find out if she actually has it as well.  It was the same with my family, my Dad dies suddenly at age 55 and Mom had later onset of diabetes which could be caused by Hemochromatosis, but we don't know as testing back then was not like it is today.  My brother had it for 23 years and recently died at age 73.  It was after his death that I was tested and learned that I had it as well.  I am so glad that I looked into further and that I am in the maintenance stage.  Good luck!
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