Haemochromatosis Help!

LegacyUser

Hi,

I am Male and a year and a half ago, I was diagnosed with Haemochromatosis (Iron Overload). I went through the venesections and got the ferritin levels down but am still feeling exhausted. All the signs are still there, exhaustion, loss of libido, terrible concentration, etc. Before I started feeling tired, I was extremely fit through good exercise and diet. I have been unable to get my fitness back in any form.

Last week after suffering for two months with a chest infection I went back to my GP who finally sent me for a x-ray after two failed antibioitics. After the x-ray and going home, I got a phone call to tell me to present in A&E. They found a sizeable shadow about 1/5 the size of my left lung, and are unable to tell me what it is (possible iron deposits?). My chest is raw with the coughing and pain and still no answers or medication.

My Testosterone level is rock bottom and have been on testroterone replacement for four months with no improvement.

I have got an appointment with an Endocrinologist in Mid May. Hopefully a MRI then will show what I think it is: problem with the pituitary gland, hence the testosterone issue.

Very interested to hear any other cases like this and treatments recieved.

Many Thanks

Anon

LegacyUser

Hi,

Just an update to above, I was diagnosed with pnuemonia which I am currently getting over (slowly). So not Iron deposits on the lung as A&E registrar suggested?. My body is extremely run down and has been since Heamochromatosis first detected and would greatly appreciate to hear other peoples stories about the disorder, I have heard people say when they get their venesections that they feel great, but for me it knocks the crap out of me.

Any ideas or stories may help. My consultant who for some reason is a respitory consultant and not a endocrinologist (but I am seeing one very shortly) thinks I am depressed and thats where the problem lies, but I asure you I am not and am just not physically able to do the things I want to, if I was depressed I just wouldn't be bothered wanting to do stuff.

Thanking you in advance.

gmf1024

Hi OP, sounds like you've had a terrible time!! You appear to have the classic symptoms of haemochromotosis. You should actually be seeing a hepatologist. My gf who also has the condition was feeling awful as well and she was told that there is a "disconnect" between treatment and feeling better. She was seeing a haematologist first before she changed. Despite it being it being the most common fatal genetic disorder, Irish doctors are not as well read up as they might be. As regards stories, you might have a look at http://www.haemochromatosis-ir.com/.
They publish a newsletter every quarter and usually include a patient's perspective.
Hope you are feeling more yourself soon.

G
p.s.
the venesections are not exactly on the hundred top things to do, so do not be surprised that you are not feeling on top of the world after them.

LegacyUser

I know it's some time since you posted this and wonder if you've had any update on your symptoms.

I was diagnosed with Haemochromatosis in 2006 and had initial venesections to reduce my ferratin levels.

Recently during a medical in a vhi swift clinic the question was raised as to whether my thyroid function was ever checked (as I am overweight and always have been) and I went on to contact my GP and they confirmed that this test was not carried out.

I have since "googled" the link between hemochromatosis & thyroid dysfunction and came accross this:

http://edrv.endojournals.org/cgi/content/meeting_abstract/32/03_MeetingAbstracts/P2-713

The sypmtoms of Hypothyroidism (low thyroid function) are similar to the symptoms that you have described and may be an angle worth investigating.