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Low Haemoglobin

Posted , 6 users are following.

Primrosegirl
Primrosegirl

I have just returned from hospital where I was to have my second venesection, but when the result of the blood test came through, ( while I waited ) I was told my haemoglobin was too low and I would have to come back next week and hope my body had recovered. The haemoglobin reading was 120 and it needed ideally to be 140 or at the very least 125. 

These figures mean nothing to me, so I wondered if this is something anyone else had experienced.

1 like, 57 replies

57 Replies

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  • lynnsk1
    lynnsk1 Primrosegirl

    Posted

    Ok so I started my VS in Jan 17, I go every week and have only had 1 week that they sent me home due to job too low. Readon is as someone else rightly said you could easily go anemic by taking the blood too quickly and if that were to happen then VS would stop & you would possibly need iron supp. Each week afterwards I sometimes later in the day have 40 winks as a bit tired and Tuesday mornings it's hard to get up early so I just enjoy a lie in. You must listen to your body. Low hb means not oxygen will possibly be carried round in your blood & you'll get light headed or faint etc. Lack of energy & your body might go into a sort of shock ( anemia) I've now had 33 Bs and my ferritin has dropped from nearly 2000 down to below 300 so my aim is to come down to 50(fingers crossed) & to hope my storage starts to drop. Going undiagnosed meant I have cirrhosis of the liver( where iron stored) so although it's life changing, I'm hoping my liver will not get worse. Drink plenty of fluids and eat before you go to VS I always start my day with high fibre wholewheat porridge made with milk and add berries and a cup of tea. 

    Good luck girls and just take care of your food combinations, that's the real help for your life change to cope, inhibit the iron absorption. I also love in the UK at the moment they throw my gold top blood away but when it's down to 50 it will still be gold top and I'll go to Red Cross or blood place instead of hospital and my blood will be used to help one of those patients I see next to me on occassionally having blood transfusion.  Mine takes about 20 mins to take a pint, transfusions take 4 hrs. Also I have my bloods taken & tested every 5 weeks. 

    • Primrosegirl
      Primrosegirl lynnsk1

      Posted

      Thanks for your reply Lynn, I am aware of eating the right things and in the right combinations. This must surely help with trying to keep the iron down, I agree that it's tragic that our precious resource is thrown away when so many people can make use of it.

      I hope you reach your target of 50 soon!

  • sheryl37154
    sheryl37154 Primrosegirl

    Posted

    I am interested in knowing what HFE genes were found in your genetic test, e.g. C282Y/C282Y, or C282Y/H63D, or H63D/H63D?

    This might make a difference in your ability to recover your Hb quickly.

     

    • Primrosegirl
      Primrosegirl sheryl37154

      Posted

      Hi Sheryl, Thank you for your reply.

       I have no idea what these figures mean, but I'm sure you do. All I can tell you is what is on the form given to me after I had the initial test .

      on the Path Report it stated I am HFE type YYHH

      position 282 YY ( homozygous)

      Position 63   HH (wild type)

      Serum ferritin 667

      That's all I can tell you I'm afraid. 

    • ellen12819
      ellen12819 Primrosegirl

      Posted

      Well lady you have mire than I do... "you have genetic Haemachromatosis, your siblings parents and children need testing oh and we need to start venesections right away." Job done!! Grrrrr....

    • ellen12819
      ellen12819

      Posted

      Sorry that should be more!
    • Primrosegirl
      Primrosegirl ellen12819

      Posted

      Did they not give you a printout of your results Ellen? I had to ask for mine, only because I read on here, from Sheryl I think that it helps if you do.
    • sheryl37154
      sheryl37154 Primrosegirl

      Posted

      You would be described as homozygous C282Y/C282Y.  You do not have the H63D gene.

      If you had been homozygous H63D that could explain your slow Hb recovery after venesection and your venesections frequency should be reduced.  Otherwise do not reduce your moderate intake of red meat and eat plenty of green vegetables - you need it to keep your Hb levels up and to stop you being anaemic.

      Another possibility - are you still menstruating?  If so, your venesections frequency need to be reduced or reduce the quantity taken.

       

    • Primrosegirl
      Primrosegirl sheryl37154

      Posted

      Thank you Sheryl, that is very interesting. No, I am post menopause, and have tried to cut down on my red meat, so I will try what you suggested. I always eat a lot of green veg although I have cut down on dark greens, spinach and broccoli etching. So maybe I will start eating those too before I go back next week just to see if it makes a difference.

      Thanks again x

  • lynnsk1
    lynnsk1 Primrosegirl

    Posted

    I have C282Y x C282Y Homozgous , oops ! Spelling lol GH 1 each from my parents and one of my sons is a carrier without symptoms the other son has yet to be determined, 
    • Primrosegirl
      Primrosegirl lynnsk1

      Posted

      Both my parents are dead Lynn, and the remainder of the family ( I have no children ) Don't want to know!

    • ellen12819
      ellen12819 lynnsk1

      Posted

      I know that both parents gave it to me, we think my Dad had the whole thing but he died two years ago so we wont ever really know. My youngest sister has just been told she has the condition, one of my sons has the gene but no symptoms. We wait for my other two to get results.
    • ellen12819
      ellen12819 Primrosegirl

      Posted

      I had the dont want to know stuff too. One soster said "keep your drama to yourself its no biggie"

    • ellen12819
      ellen12819 Primrosegirl

      Posted

      Oh dear soster? I mean Sister... though i can think of worse things to call her *sigh* thanks for the nod about my test results I will ask for a print out next time I go. Good luck with your next venesection. Bye for now *waves*
    • Chelle69
      Chelle69 ellen12819

      Posted

      I know what you mean! After being Diagnosed with HH and told to inform siblings etc

      I searched for my sister and found her on Facebook living in New Zealand and her response was basically not to bother contacting her again!!  Families eh

      Just hoping my Son & Daughter haven't got this waiting for them to be tested

      Best of luck x

       

    • ellen12819
      ellen12819 Chelle69

      Posted

      I just dont get it. It is as if people are ashamed to speak about it... Its not venerial disease! Wake up world we didn't or ask for it. Rant over and on we go...

    • sheryl37154
      sheryl37154 ellen12819

      Posted

      Yes, there is that thinking that it is a 'disease'.  Even the Blood Bank think along those lines.  It is not - it is a metabolic disorder.

       

    • Primrosegirl
      Primrosegirl Chelle69

      Posted

      Hi Michelle, Hope you are doing OK.

      What is the latest on your treatment, hope it's going well,

      Still having problems with my hb, and they will space out the venesections to give my body a chance to recover. So it will be every 3 to4 weeks instead of 2.

      Take care, Jen xx

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