British Lung Foundation

What is Alpha-1

I've heard about this and wondered if m Copd is hereditary than actually down to my smoking..

My nana passed away in her early 40's with COPD, she was a smoker but her sister passed away with COPD/Cancer, she never smoked. I know my aunty had this condition for yrs, I lived with her so knew her issues..

Could it be that my COPD is hereditary and made worse with my smoking..?

I feel my doctor is not treating me correctly because he blames everything on my smoking. I've had asthma for yrs..

I have issues with cramp, painful feet only at night at the moment but have had a couple of experiences where when I stand on my feet its like walking over glass.. I have pneumatic spots on my lungs and waiting for another xray to see if they are gone.. When I spoke to gp about feet he mentioned hardening of the arteries but doing nothing about it.. I have osteo arthritus in my lower back confirmed with xrays, my right hip has been an issue for 3 yrs now and he won't send me to see someone until I se physio which I've refused because when I saw her 3 yrs ago she created more issues for me with trapping a nerve (I'd do exercise she taught me then trap the nerve and go down like a sack of spuds) so, understandably, I refused giving reason why. He won't send me to a specialist until I do but now its happening to my left hip and I'm too scared to ask to see someone other than him concerning it.. he just seems to dismiss me as if its all in my head.. This is why I won't ask for Alpha-1 test. I have to say I would really like to have the test and it show its not entirely my fault and make him treat properly.. I know I should change surgery but I want to prove this bugger wrong first, then leave..

Thanks for listening..

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10 Replies

Hi Eviex

All your gp needs to do is a blood test, i know you dont want to ask him but just explain several members of your family have it so you wld like to know for your own peace of mind, if you are under copd nurses maybe they cld arrange it for you. I had it done as my mum died from copd nearly 5 yrs ago but i dont have it mine is due to yrs of smoking and probably a fire. Good luck with it, i know how hard awkward drs, consultants can be and if only they could just try to put themselves in our situation they may be bit more co-operative

the GP if asked should do it for you i have it but only fond out after diagnosis of COPD, but both my children have had the test on reqest

Hello Eviex,

it's so frustrating when your gp seems to be against you, as much as you may tell yourself that he has lots of patients, not just you, the bottom line is that you are the important one when you are there. Not all drs are the same, we had a similar dr, but changed last november. The thing about a new dr is that you will have to tell him/her your history and that is a good thing, get as much info out to them. They also have to give you an introductory medical. I hope you get some satisfaction, good luck.

Thankyou, appreciate your advice, never thought of it that way..

Junegirl, I don't see the copd nurse, last time I saw her was when she did the spiro test and for a stronger inhaler.. Like I said I don't feel I'm being treated properly, the only thing now getting sorted is my blood issues and I had them for a yr before he did anything for that..

I wonder if I could ask hemotology to do the test since they take lots of blood every month..

Hi i dont know what stage ur at, i was put under copd nurses 2 yrs after diagnoses, i not sure hemotology wld do that as they need the request form filled in from gp i think. You could phone last copd nurse you saw and ask if they could help you, or if ur surgery has pratice nurse you could ask her to do it other than that i would ask him out right if his refusing, then request another gp, ive got similar problems with a consultant who has just dropped me, so got gp care visor helping me now. Does ur surgery have one? maybe an idea to phone surgery and request their phone number if so, hope that helps x

I'll try that, Thankyou x

I was rushed into hospital 5 years ago as i was having breathing difficulties after being in in tensive care because, of the hos keep miss diagnosing me after being in and out of hos. When i came round i insisted on every test going.They did all the blood tests and sent one of to a hospital in sheffield that apparently specialises in why peole have breathing problems.They found out i had the alpha-1 faulty gene.As it worked out i only got it from my mum and not my dad aswell which would of made it alot worse.They tested my familyI have 3 brothers and 2 sister 1 sister has the problem like me the other hasnt.I had a brother who died suddenly last year didnt even know he had the problem but he did have other problems aswell.The other 2 brothers are fine.The specialist at Manchester said it is hereditory and not a major problem if you take care of yourself and get regular check ups.From that day i stopped smoking cause basically they said smoking makes it 10 times worse,i believe that now as my brother who died wouldnt stop.I do believe the doctors nowadays arent very interested in you if you smoke.When it comes down to it all its your life if you feel you arent getting the right treatment tell your doctor dont let him fob you of

I asked for the test to check in case I needed to alert my kids to their vulnerability and so get them help early - luckily, I have not got Alpha 1, so that's not an issue. think it's worth medics doing all tests they can because that leads to most cost-effective treatment, not to mention much better for all of us too.

Thankyou x

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