Private genetic test for Haemochromatosis

[AngelicAngel]

Hello, I'm new to the forum. I wanted to find out any recommendations for private genetic testing for Haemochromatosis please? My GP doesn't think I have it due to transferrin saturation in normal range but my serum ferritin is creeping up since menopause plus I have a predominant Irish an ancestry, iron fist, bruises that leave shadows (2 years) & arm hair disappeared. Also tired & achey joints. Realize it could be something else but want to rule it out or in. Thank you all

[Winnieboo]

Your symptoms sound like mine and I have haemochromatosis. Did your GP suggest anything else it could be? Does anyone else in your family have haemochromatosis? If so you could ask GP for the test based on that. Some GP's really aren't that clued up on haemochromatosis, I would go back and ask for the test again, say to put your mind at rest as you're worrying about it. Hope you get some answers soon.

[AngelicAngel in reply to Winnieboo]

Hi, thanks for your reply. My family were all too eccentric and barely went to a GP although long lived, so no known history of it. I'm being tested for Rheumatoid arthritis and other things ie lupus. I will see what the findings are on that. If nothing comes back on the bloods will look at private testing. Found a couple of places here and in the UK that do them prices range from £150-250 ish. Thanks again

[radd]

AngelicAngel

The 23andme test incorporates the genes involved in Haemochromotosis.

Genetic testing is expensive so NHS won’t sanction unless serum ferritin is off the scale, or else slightly elevated coupled with high transferrin saturation levels. Ferritin can be elevated due to other causes as is an inflammation marker.

23andme.com/en-gb/topics/he...

[AngelicAngel in reply to radd]

Thanks Radd, as per my previous reply I am being tested for RA etc etc.

Yes, you are right about ferritin, GP said it might have crept up due to a chronic shoulder injury plus age and other underlying causes. Thanks for the 23&me info, I'm just a bit worried about direct to consumer dna/gene testing & the ethics of it ie what they do with the data and who might control it over time. Thinking medical insurance companies etc.

Thanks ks all again

Angela

[whend100]

I am in the USA so I don't think my advice would help you with Genetic testing. But some of my best resources have been on line. Best of luck

[pduggan9011]

patty9011 Had yearly blood work. my doctor added the ferritin to the blood work and also hereditary. My Dad's side. then started at least once a month having a phlebotomy. having blood taken out. pint or more did that for at least 2 years. after my liver issues started the liver dr said I was just a carrier now don't know why . personally why would it matter which parents ? patty