Rash ever connected with haemochromatosis?

[Chancery]

Hi. I've been plagued with itchy, raw 'rashes' round my eyes and along my collarbone for about 6 months now. I finally gave in and went to my docs, convinced I had psoriatic arthritis, because I also have very high levels of muscular & Joint pain. I got a referral to a rheumatologist and my doc did blood tests. Today the surgery phoned to say I have 'slightly raised' Ferritin levels and raised TSH levels.

I've never had high ferritin levels before so I went to look it up and discovered haemochromatosis and it fits horribly well. What's worse is I have some of the symptoms of more advanced haemo'. Specifically, breathlessness and oedema in my feet. My doc hasn't mentioned haemo' but he wants me to have ferritin tested again in 1-2 months, assumably to see if it's still elevated.

I appreciate this might just be reactive high ferritin, because I have rashes and sore muscles/joints, but it seems so suggestive of haemo to me that I don't want to wait even a month. There is something else they can test, isn't there? Would it be worth my while to ask for more testing now?

For reference, I have been plagued with tiredness, arthritic pain and IBS since about 53 (post menopause). I've always felt sure I had an autoimmune condition or some such, but it was always inferred I was just getting old. My family is Scots Irish and my mother had some problem with her blood that stopped her being a donor, but I don't know what it was.

Anyway, if anyone knows of any rash connection I'd be very glad to hear about it. I've also been plagued with itchy skin for years, but the rashes are more severe. They are raised red patches that feel raw and burnt, like bad sunburn, no spots. I've ben using steroid cream, which soothes them, but it isn't curing them. They are related to heat/sunlight maybe. Heat certainly makes them worse.

[Porphyriamaniac]

Hi chancery, do these patches start out as blisters? I've got a condition called porphyria cutanea tarda, you may have heard of it as vampire disease? Anyway, it makes skin blister in the sun and ferritin is often raised also, my treatment is venesection, the same as for haemochromatosis. I just thought I'd mention it to you, as it rung alarm bells when you mentioned rash, sun and raised ferritin. My other symptoms were red/dark urine(No blood on dipstick),excessive hair growth on face, fatigue and skin fragility. I also know when my ferritin creeps back up and i need blood out, as I get joint pain, though not sure if this is typical. Below is a link to the British liver trusts porphyria info page if you want to have a read? All the best to you, if i can help in any way, message me.

Stacie. X

britishlivertrust.org.uk/in...

[Chancery in reply to Porphyriamaniac]

That was a very informative link, Stacie, thanks. I do have some symptoms, most notably the burning. My skin feels burnt quite a lot, but it's only on my face. Surely I would get it on other exposed areas, like hands and feet too? Also no blisters (thank God!) if I don't treat it, it gets very red, very very itchy and gets raised and thickened looking, but nary a blister in sight. I have more muscular pain than you can shake a stick at, especially in my back, which is crucified with pain the whole time, but overall, I'd say my symptoms are not quite right and not severe enough. Unless, of course, you can have milder versions of it?

I don't know if it's related at all, but I used to get severe rashes round my ankles every summer, all summer, so badly they have left purple 'stains' on my legs. I wrote this off as urticaria , as it was brought on by sunlight, but I also got it as drug reactions. So no idea if that means squat! That was helped by antihistamine tablets, so that might indicate an allergic reaction.

[Chancery in reply to Porphyriamaniac]

Should just say I do have crushing problems with fatigue and yes a lot of facial hair on my chin, but assume that is just being post menopause!