I had fortnightly draws until my Iron levels all came into normal range. The early stages were when I would get very tired and fall asleep if I sat down at any time. My joints were painful. You need to talk to your Doctor about this. Maybe it is to much for your body. My levels were 2003 when I started, it took 18 months to get to normal level. 24 litres of blood taken. Now I am on maintenance.

Cap6,

The treatment seems to have hit you very hard. Make sure you drink plenty the day before and on the day of treatment.

My consultant keeps my ferritin level down to below 50. She is not happy if it is above and she says I will have symptoms if over 50.

I had once-weekly treatments for a couple of months, then once-fortnightly, then once three-weekly then monthly. Over the course of the year my ferritin level decreased incrementally (luckily for me) and my joint pains and other symptoms which I now know to be related to HH decreased considerably except for in my feet where I have permanent damage.

In the first few months I was a bit breathless but the most breathless I became was when my ferritin level went down to 25.

The following year I had once every six-weekly treatments but my ferritin levels went up - but I was never breathless.

Now I am back to once-monthly phlebotomies and no breathlessness.

I have my phlebotomies in the afternoon, have nice, light lunch and drink plenty the day before and on the day of treatment. I also arrange for the morning and travel to the clinic to be as stress-free as possible.

I hope you can find a way of helping yourself to manage it a bit better.

Christine

When they were discussing how often I needed to have blood drawn, it was thought that weekly was to much for my body. You could become anaemic even though you have high iron. I have seen on this sight people who have had weekly draws and the Iron levels not being as high as mine were. Maybe some Drs over react to high iron levels. It needs to be taken into account how this affects your body. Even when you have blood taken your levels can go up. Stress, illness can increase your levels. Take control, if you think this is too much then say so. Your Iron levels will come down in time. Do it fortnightly, not weekly.

Brinski,

I also understand that people respond very differently to HH treatment - the body is very complex.

I have been able to tolerate weekly and fortnightly venesections but others are not so fortunate and can not tolerate frequent treatment.

Other people at the clinic that I attend have a blood test a day or two before having a phlebotomy to determine if the venesection should go ahead or not - although I have not had to have this.

I have a print-out of all of my blood test results over the last 3 years since diagnosis plus a couple of earlier ones. This means that I have been able to ask my consultant about them and I believe it has helped me to understand and contribute as well as I can to the management of my HH.

Thank you for all the comments. I spoke with the doctor and I will be having 2 draws in January and then off till the first of March. Yay! He agrees that it was probably just too much for my body. SInce my levels are coming down it shouldn't be a problem.
It helps so much to get feedback from others! Helps to nbot feel like you are the only "crazy" one in the HH world!

Cap6,

You are definitely not the only one affected by this - although most people have never heard of HH so there is not much support locally.

I have personally never met another person who has HH except for at the phlebotomy clinic. I know 2 people only who know people who have it.

You're right. Seems the only people are the ones I see also having blood letting.