Possible haemochromatosis?
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Hi, I am new here. I have a condition called porphyria cutanea (tardahttps://patient.info/health/porphyria-leaflet) I've included a link just incase anyone is interested/intrigued, it's rather weird. Anyway, one of the possible causes of this can be hereditary haemochromatosis , we've ruled most other causes out. I have had my ferritin levels checked, they are 292, my transferrin saturation is 53%, I am a 5ft 33 year old female who has always been on the anaemic side till I hit 30 when all my problems began. I have been referred to haemotologist about my porphyria and this iron loading business, funnily enough I believe the treatment for the porphyria is also venesection. He will be testing me for HH I expect owing to the 2 conditions being linked and my levels. How long do the results take to come back for the genetic test? Also is there anything I can be doing to look after myself in the meantime?
Thanks.
Stacie. X
0 likes, 6 replies
Chelle69 stacie32
Posted
Hi Stacie
I had never heard porphyria cutanea before so it was interesting to find out more about it. I have HH (C282Y/C282Y) and was diagnosed in Sept last year, it's roughly about 3/4 weeks for the genetic test results to come back.
I'm having venesections at the moment to remove the iron and am on my third one at present. ?Regarding diet they do say to avoid having too much alcohol and also red meats etc but you can buy a haemachromotosis diet book if your interested and unsure as to what to eat and what to avoid. I believe it's available from one of the haemachromotosis help sites that are online but not sure which site it is...Sorry! One of the others on this site may be able to tell you as they are lovely and helpful bunch of folk on here!
To be honest I haven't changed too much of my diet as I do try to eat healthily anyway, all I've only cut down on is the amount of red wine I consume!
Hope I've been of some help! and all the best with your test results Stacie xx
Best wishes x
stacie32 Chelle69
Posted
Hi chelle, thanks for your reply and warm welcome 😊. Yes it's a really weird one, I can't find anyone else with it, it's also known as vampire disease! 😂. Thanks for info regarding wait time, good to know. How are you finding the venesection? Is it helping your symptoms any? I must admit it's not something I'm looking forward to, I will have it to come either way as it's the only way to send the pct into remission 😕. I will have a look for the diet book, thanks for that. Dr mentioned alcohol but not the meat but it makes sense and you have helped some. I will keep you posted about my results.
Thanks again!
Stacie xxx
sheryl37154 stacie32
Posted
Look for it in your local library first, or ask them to get it in for you to test drive.
stacie32 sheryl37154
Posted
miller.jones stacie32
Posted
I wouldn't worry too much about diet if you do you will end up going crazy.
The only things to watch out for is say eating the likes of Liver, taking supplements, foods fortified with high iron content. (most foods are fortified now it's high iron ones to avoid like cereals)
If you do eat foods with iron avoid having other food that is high in vitamin c within few hours of that meal
sheryl37154 miller.jones
Posted