Hello everyone, I am based in the UK. My Dad told me to get tested and I did and I have tested + for alpha 1 antitrypsin deficiency. My GP will not do any follow up appointments as they say I am symptomatic and there for nothing else can be done. This leaves me feeling very vulnerable and uniformed. I have been given no information on what to expect. No further tests for to determine if I am M,S or Z. I am 50 years old a non smoker (socially smoked when I was younger). I also suffer from Gilbert's syndrome and now wonder if that is at all linked? I had my blogs done and my liver functionality was all fine. I have no information and if you look on the net you would think I am going to die by the time I’m 60. Please help with some advice! Thanks Paul
Recent alpha 1 antitrypsin deficiency... - Lung Conditions C...
Recent alpha 1 antitrypsin deficiency diagnosed
Thear is no reason you ahould die in the next 10 years as far as the Alpha 1 is concernd. I know nothing about Gilberts, but i do know that in the uk thear is no treatment for the alpha 1. You can get tratment for the problems it can cause copd fibrosus ect and liver problems but as you seem to have none of them i dont think thear is anything the gp can do for you. I think thear is a alpha 1 support groop on hear (HU). Google can help but stick to NHS sights if you go to the American equivalent the info is good but the treatment options are wrong for the uk. Some people have the alpah 1 deficency and never get any problems i think healthy lifestyle helps .
Hi, if you tested for positive for alpha1 they should have told you the reading mm etc that's what the blood test is for. . Unfortunately there is no treatment in the UK, il.
Why did your dad tell you to test, does he have it? If you have it then get your children tested. You can get more info from the alpha1 help centres.
Thank you, yes my father does have it.
The only result I was given is 0.77g/L when apparently normal range is 0.9-2.0
Welcome to this forum. There are several members here with A-1ATD. I understood that it was an inherited condition. I think your GP’s reaction was appalling. You will get a lot of help, advice and support here. All the best
alpha1.org will give you lots of information on this genetic condition. There are centres throughout the country following patients and carrying out research and a trial currently recruiting. In 2001 I was a patient representative ( not being positive for it) on the panel for a drug trial and attended a conferance in Barcelona. Sadly that trial did not prove succesful. This is not a condition which kills patients in itself. It is an inherited lack of the substance which coats the lungs if they are assaulted by serious infection and most importantly smoking. This means that any condition such as emphysema progresses far more rapidly than in a person without the deficiency.Anybody who tests positive should give up smoking immediately and all close family members would benefit from being tested. Your GP is uninformed and lazy. Do your own research to find a centre to help you.
agree totally my GP doesnt seem to know anything or care --I also have Nash liver disease but my Alpha doesnt seem to have caused a problem for me as i have never smoked or drink alcohol I am a SZ if I had smoked it would have been a different story I am 76
I'm a ZZ Alpha, but I'm US based . Matters are different here . Infusions are part of our approved treatments. Your Dr. only gave you partial information. There are things you can do. Avoid pollutants as much as possible. Dust, smoke, etc. Take good care of yourself, exercise, and avoid exposure to people with respiratory illnesses as much as possible.
Many Alphas live a normal life span if they take care of them self. My best wishes.
JCL
Not what you're looking for?
You may also like...
Recently diagnosed with COPD
Dad recently diagnosed with IPF
recently diagnosed mild COPD after spirometry
Recently diagnosed Asthma & COPD overlap…. Struggling with anxiety
Recent COPD diagnosis
Newly diagnosed with bronchiectasis
update on my “ newly diagnosed post” 
Has anyone had a Spirometry test recently?
