Skin Bronzing

Thanks Sheryl, i had patches of bronzing on my feet and legs over 20 years ago, after a while it disappeared but came back last year. The first time it occurred I was sent to a dermatologist, had tests and he told me it was iron deposits in the skin. I was then referred to a make up specialist for colour match camouflage cream to disguise the pigmentation.

It is only now that that Ive been told about the possibility of being HH after a friend said I should push for a diagnosis ( Ive paid for my own DNA test to speed it up) and Ive already had an abnormal LFT. 

did you suffer frm the aching joints as well? 

My gp took nine years to diagnose.  The fatigue was so severe I was staggering and slurring, I had whole body pain, pain in left leg and hip, LS chest pain for 12 months before diagnosis, then one day I stepped sideways and my left hip broke up from osteo necrosis.  My blood was so thick with iron that it blocked the fine capillaries that fed the bone, so the bone died and broke up.  So i was diagnosed with HH.  Homozygous C282Y.

With weekly venesections, the LS chest pain dissipated.  It comes back when my ferritin level gets higher for some reason.  I now get arrythmia.  I eventually had both hips replaced as RS broke up 6 weeks after first replacement.  I have a little arthritis in my RH but not too bad.  Botched hip replacement causes more pain in hip, groin, thigh, knees, feet.

If you find your hormones go haywire, have your pituitary gland checked.  HH can cause damage to it as it did mine.  I had a prolactinoma which was making my HRT ineffective - for 6 years (that is how long it took to get that diagnosed).  Once I was on carbergoline, hormones started improving.  Women need extra oestrogen when they have a prolactinoma as it sends us into menopause.

Stuffed up thyroid, had half removed plus a cancerous tumour in my parotid gland removed (we are prone to cancer - cancer thrives on iron), helicobacter pylori - it thrives on iron too.  Heart must have been absorbing iron as well.

Only thing good so far is my liver.  If you have an abnormal LFT get something going on that straight away.  I found we don't digest sugars and starches (which are really sugars) very well and they cause fatty liver too.  So if you are big around the waist, cut them out.  You will feel much better.

I started with weekly venesections and am now on 3 monthly maintenance venesections.  You don't mention your Iron Studies levels, but if you ferritin is over 200 you need to start venesections.  Also your TS% is a marker for HH, if it is >45.

Seek out your country's HH assoc and get advice from them, and find out your nearest support group.  I started my own as there were none in my state.

Thank you so much Sheryl, I have much of what you described and thought it was down to the menopause(im in my 50s) but the slurring made me think there was something else wrong. It's a relief in some ways to know that others have experienced the same x

I have seen a young man with HH who was almost liver coloured (dark reddish) as you describe.  He has Spanish and Irish heritage.

I have seen some with black colouring in their skin and they have either Scottish or Irish heritage.  My skin had a blackish colour when I turned side on.  My colouring was upper chest, shoulders, neck/throat and upper back.  My normal colour is fair, with blue eyes and fair hair.

 

Sorry, my reply was to Sherry...

Leendylou, I had a change in hair color..like a goldish bronze..Nasty looking...Subsided somewhat now.