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.
Crazy though it is you can actualy be aenemic even with this crappy condition. I have just had my third venesection. The last one my numbers went up? Logically neither your drop in hb or my raised figures in ferretin shouldn't, but do happen. Mine are every ten days as they thought one a week would leave me with too low haemaglobin (hb). Some people drop too quick, so they have to leave bigger gaps between the venesections. Then if you have an underlying infection it too can warp the figures . Although I am almost as new to this as you and dont know much I can tell you that yours is not the only one. I hope it helps some.
Thanks Ellen, it does help, I was really fed up having to come home without having treatment, but I'm feeling better now! 😊
Hi Jen
Sorry to hear this happened at your second venesection today. I guess they can't take your blood if your hemaglobin is low for whatever reason?! Did the nurse not explain as to why they couldn't do it?I Wish I could be of more help to you, but as you know I'm way behind having only just been diagnosed and not having had any venesections done yet. Hope you get some helpful replies back from some of the lovely guys on here,..
Good luck and hope you get some answers and get treatment going again very soon xx
Sometimes just knowing it happens to others helps. If you are in UK like me you can go on the Haemachromatosis society uk site and see what it says for high hb? But I think I told you right. Good luck. P.s. i had my first good day in years today, that has to be good. X
Thanks Michelle, I know it is risky taking blood when the haemoglobin is low, but I suppose I just didn't expect any problems. Just hope it's better by next week....
Any news your end yet, it's so frustrating when you seem to be getting nowhere, I'm sure it won't be long. Take care
Jen xx
You are so right Ellen, it makes all the difference knowing you're not alone xx
They have only checked mine 3 or 4 times in a year.They seem to check every time in the USA. I went to a hospital in Thailand once and they refused to do me as my haematocrit was a bit low but the NHS were okay with it.
I am in the UK Eric, and they say that the haemoglobin is checked everytime before venesection to make sure you are within the right range, at least at the hospital I go to.
Mine has been checked at each venesection so far.
We must be lacking the mod cons in Rochdale.They take my blood pressure,moan that it is too low and then stick the needle in.Every 3 to 5 months they do a full blood count,the syringe taken from the bag overflow and I get the results the next time. They laugh when I say some hospitals have mobile ultrasounds to detect veins and usually only use the one prominent one I have.
It probably depends on how high your numbers are and how long you have been having them primrose girl and I are very new to this.
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.
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.
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!
Yes,you're probably right.Mine has stayed above the 140 mark so they must be confident it will remain there.
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.
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....
Sorry that should be more!
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,