Just for general info, here’s my HH story so far. Hope someone finds this useful!
Fairly fit regular cyclists, 43 years old. I started struggling with regular exercise, so cycling to and from work which I did most days (15km each way on flat path) started becoming hard, particuarly in the evenings. I also have a nice flat 5km running route which I would squeeze into lunch breaks when working from home, I’d gradually been improving my times, then bizarrely started to find it hard about 2 years ago, then got to a point where I couldn’t complete it any more. I was worried I may be developing diabetes or something so I did a Numan blood test. It came back all fine apart from the ferretin leval of 1200 (think normal max is 200 or so). I was also very achy, hands and feet hurt, bad memory, etc…… All the textbook symptoms that I just associated with being busy/getting old.
Luckily one of my mates is a specialist in blood (medically trained, not as a hobby) and said it was very possible Haemochromatosis. I got refered to a specialist, had all the genetic tests, etc done and sure enough he was right.
Treatment has been as described above, weekly venesections. To start with these didn’t seem to have any negative effect, in fact I felt better after them which I think was probably the phycological factor of starting treatment. I’m on number 24 now (ferretin gone from 1200 to about 400 ish) and I feel horrifically tired. One saving grace is I am ok in the mornings so I get up and take the dog for a quick 5km jog at 6am before work. Evenings are a total write off, I get home from work and basically hit the sofa. Work is very tricky and I have to be very careful not to take too much on or forget things.
I think the draining (haha) effect of the VS really takes it out of the body, so think this is the dominant factor effecting me right now. I’m hoping when I hit maintenance levels and drop to less frequent donations I’ll be back to my normal self.
If anyone wants to chat about it, feel free to send me a message!
