Haemochromatosis support please. Ferritin levels climbing again and feel so sick. No contact from anyone.

So I'd been gradually getting sick for many years with various ailments. Eventually so ill I forced myself to overcome my massive phobia of blood. Anyway turns out I have CY28Y x 2 and a ferretin count of 1200. Hypnotherapy doesn't work so I'm just having to bite the bullet. It's horrific for me but I've managed six venesections. After five it seemed to be dropping to around 800 but it's gone straight back up to 1150. I'm also feeling terrible again and I'm trying to work but it's so painful and tiring. Work are not pleased it's not just a few weeks.

My doctor has never contacted me or given me any results from my MRI and refuses to do so. The nurse decided I should go every week as she is kind enough to share my blood test data. Being completely alone doesn't help either. I'm starting to feel my life isn't worth living anymore.

So I'm a bit lost and would like any advice or help I can get on how to get better, how much better I might get, why am I getting worse again and what I should do if I don't get better and lose my job?

[RHGB]

Hi Craig,

Hopefully you will get some answers to your questions, but just in case you don't, I have PM'd you another forum that is pretty good for haemochromatosis.

When I first came out of hospital, it was thought I might have haemochromatosis due to my high ferritin levels. I do not wish to worry you, merely stress the importance of not doing nothing. Haemochromatosis left unchecked can irreversibly damage internal organs through iron build up. Unfortunately, from what I remember, in the short term venesections are the only way to keep it under control until they can may be find a trigger for it.

I see you have been for an MRI, you are untitled to a copy of the report, ask the practice manager for it. Did you just go for a scan or did you see a gastro as well?

[Hidden in reply to RHGB]

I have been told by the nurse he is going to see me eventually and expect a letter in the next few weeks with an appointment. She also gave me this week's results and my levels have began to drop again. I guess I had an infection.

More waiting but at least I know he's aware of me now. I just hope my symptoms improve

[Hidden]

Hi Craig, You are entitled to any information so the idea of a doctor "refusing" to do so is wrong. If further requests don't produce results, change doctors: it is a very simple process and takes just a few days.

Managing your iron levels is a priority as RHGB says because you are at risk of major organ damage. Treatment is easy but it can take some time.

You may find some more useful support from the Haemochromatosis Society website at haemochromatosis.org.uk and their Facebook page.