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300ml phleb - feeling short changed

Posted , 5 users are following.

eric89660
eric89660

I had my second phleb this week and looked at the blood bag. I mentioned to the nurse that it didn't look like a pint.She replied that it was 300ml and that was the normal amount.I always understood that it was 450-500 ml.My GP couldn't find anything when he looked it up,so does anyone know? Also,at SF of 1,300 I expected to be going more frequently than every fortnight.Some people go every week for a year,but I have been told I should be on maintenance after 6 months.

2 likes, 8 replies

8 Replies

  • dillinger
    dillinger eric89660

    Posted

    Hello Eric,

    My levels were at 1440 when I was first diagnosed and I had a pint out every week for a year until my levels were down to 36.

    At 1300 I would have thought you should be having phleb more than once a fortnight.

    Regards

    Dillinger

  • philx
    philx eric89660

    Posted

    Hi Eric

    I put a posting on here some weeks ago, 7th venesection I didn't drop

    At all,8th venesection they could only get 250m out,blood just dried up,

    Then to further insult me my levels went up 179,

    9th venesection 26.9.16 my levels dropped by 219,I have been having a

    Lot of really bad muscle pains moving around, neck,shoulder, hip and

    Down my leg,whether this is due to venesection I have no idea????

    But I'm told any inflammation can affect our levels.

    I have conditioned my self not to expect to much from any venesection

    Then I'm not disappointed, it will take as long as it takes,

    We are much better off than glyn who's levels seldom move.

    Come your chin up

    Cheers philx

    • chorleyboy
      chorleyboy philx

      Posted

      Hi Philx, I gave a pint yesterday and the nurse took a sample to test for next Wednesday,  Last week when I got the results it had gone down which was good, but only the ferritin level, the transferrin saturation percentage was still 92% and the Hb 122.    It thought if the ferritin level went down, so would the other two results.     Not the case it seems.   The nurse said, dont' be surprised if the ferritin level is up again next week.   I hope not.   But, she seems to think my severe arthritis is preventing the iron level reducing.    I am just wondering what effect giving a pint of blood every week for a long time has on the body and how do I get the TS% down to between 20 - 50.     We just have to keep going, regards Glyn

    • philx
      philx chorleyboy

      Posted

      Hi Glyn

      Have you contacted other Hemotology departments around the world

      Presenting your medical case,one of them may just have an answer

      To your condition??? It cannot hurt to try anything,

      As I stated since starting venesections I have definitely started getting

      Muscle pains ,so could venesection be making your arthritis worse.

      I have another venesection on 13.10.16 then see the hemotologist

      The following day i will most certainly be asking if it venesection that's

      Giving this joint pain???

      Very best wishes glyn I do hope you manage to find an answer to your

      Dillema???

      Cheers philx

    • sheryl37154
      sheryl37154 chorleyboy

      Posted

      My TS% did not reduce until I continued to have 3 monthly venesections when my ferritin was less than 30.

      I have never read of any bad effect on the body from giving blood every week as long as your Hb is not <12.5 (125) when you give it.

       

  • eric89660
    eric89660

    Posted

    Thanks for yor replies.I'll update if I find out more.Just to be clear though.The bag was full.It was just a smaller bag than the "pints" everyone talks about.

  • sheryl37154
    sheryl37154 eric89660

    Posted

    Check out the Iron Disorders Institute website - Helpful Forms - Hemochromatosis Reference Chart.  Print it off and take to your dr.  That will give him something to go by.  It is 500cc per week if you are up to it.

    I did weekly for about 3-4 months (it was a blur) or more then dropped to fortnightly, then monthly, etc. till I was totally 'de-ironed' (i.e. ferritin level of 13) then moved to 3 monthly maintenance.  Not so straight forward as that, but that was the aim.  Had some ups and downs.  Trying four monthly brought me back to 2 monthly for a couple of years.  It was not a good idea.  Now I stick to 3 monthly no matter what.  I won't let the haemotologist change it again.

     

    • eric89660
      eric89660 sheryl37154

      Posted

      Thanks Sheryl.I'll use that to ask him why I didn't have 500 taken. 

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