Alpha 1 Antitrypsin

[HRH8591]

Hello, new to here. Just found out I have Alpha 1. Been unwell for about 18 mths and GP's just kept telling me I was ok. Did my own research and knew that my dad had it - just didn't know of the lung side of the disease. My dad died of COPD and his mum pancreatic cancer (also had pernicious anaemia. Had test done by Medichecks and point to a liver problem. My GP's started to chat to me a while ago about drinking too much but I don't and stopped completely last November as a single glass made me so ill. Not sure what to do next. My level came back at 50. Any advice from anyone where I go from here and how to find a really good specialist? I also have Hashimoto's as yet not treated.

[carmik]

Hi sorry about your diagnosis.

My hubby is an alpha. Ended up being transplanted in 2011.(liver)

We have a site on yahoo for alpha 1, would probably be best for you to join in here. Also we are on facebook.

You will get lots of answers and info on theses sites.

Look forward to your posts

[VickySusan]

Hi!

My dad was diagnosed Alpha (ZZ) May 22nd. Unfortunately his decline was so rapid the window for transplant was missed and he passed away last week. However, my brother and I have been tested along with my daughter and all of us are also Alphas (MZ). There’s amazing advice and support out there, and with Alpha, knowledge seems to be the best weapon. Unfortunately a lot of doctors do not know enough about Alpha 1, and before diagnosis my Dad was accused of being a heavy alcoholic and a secret drinker more times than I can count (he never drank). There’s some great doctors out there though, ask around and I’m sure you’ll get great advice (we had a great Doctor but as he only saw us for a few weeks, I wouldn’t like to recommend him on a long term basis). I wish you every luck on your Alpha journey