Hi All, I had 3 venesections and was starting to feel alittle better but the was told my HB level had dropped so had to go fortnightly to give my body time to recover,since then I have had 3 more and noticed after the last one on Friday the day after I started to feel dizzy and the brain fog was back,and it hasn't gone away,I feel ok in the morning for about an hour after getting up and then I start feeling awful again.Has anyone else had this and should I visit GP or ring phlebotomy at hospital?
Snap! That appears to be the norm fir us un normo's. 4 weekly vens then anemic ... one where numbers fell hugely but more anemic. They stopped them for three weeks and now i am nearly as foggy as london in the smog. By 1 O'clock I am done totally rubbish. They just cancelled todays and I am dreading Christmas. 😣 Doctor said it is just how it is until I am in maintainence. But you are not alone.
Thanks for reply,I am getting fed up feeling like this as I was feeling better now that just highlights how crap I feel again and I've been having tinnitus aswell (forgot to mention earlier). Is it a case of just putting up with it.
Oh dear Clare, it is pretty horrid. I got excited for the time i felt well then dispondant when it fell away. I have no experience with tinitus and am pretty sure it is not connected, so I would see the doctor with that. My experience is that they are trying to get us to the lowest levels without making us anemic. Unfortunately some of us don't respond as well as others do and we have slight set backs. To us they are huge but the doctors don't see it that way and say often we are the ones that get to maintenance sooner. So we plod on and one day soon they will say we have made it,
Hb will settle and we can take back some control. I hope they will give me a venesection tomorrow and wont send me away. Good luck and Have a good Christmas.
Thanks Ellen,think I just had a moany day!!! Unless you actually have this nobody seems to understand,but anyway thanks again and have a great Christmas. And feel free to moan back.x
If we didn't moan here where on earth would we. I feel so rubbish today and just hope my 3 o'clock hospital visit gets me the venesection i desperately need.
How did it go, did you get right result.x
I had the venesection. Kept me there because bp hit the floor, just arrived home off to bed. Catch up tomorrow. Thank you Clare.
Hi all, I am new to this but I have been feeling quiet rough. I have given blood twice and then they have stoped it for a while as I was extremely dizzy no energy and have been feeling sick and been sick on a few occasions. Just reading some peoples experiences makes me feel im not the o ly one who always seems to feel poorly.