Aplha-1 defficiency???

[Lulububs]

Hi

I am a 46 year old healthy women...

I had some bloods tests done for a

Rheumotology app for something totally irrelevant to this and it came back that my AAT was to low(0.09) .... i did have not have any of this explained to me just that i had another blood test. A month ago i rang to get results they told

Me it was fine( the receptionist).

Today i get a call from a GP asking me why i had not called in .. i told her i did and i was clear!

The Gp Explained this was not the case my AAT was low and it was being sent on to a proper lung lab to b tested.

I wander if anyone has Alpha-1 deficiency? And can explain without scareing Me half To death as i thought i was fine and it was all clear now im told it not....

Just need someone to just help me out abit, its kind of thrown me

[Bkin]

So sorry for your diagnosis Lulububs.

I don't have alpha 1 and I wouldn't attempt to explain anything to you as possibly anything said could scare you.

I would refer you to BLF helpline / pages: blf.org.uk/

and perhaps alpha1uk website: alpha1.org.uk/

There is some encouraging news I can tell you - that I have known a 77 year old with alpha1 and he was doing ok at the time I was attending an exercise group with him and other lung patients.

All the very best wishes to you.

[Lulububs]

Thanks bkin.

It all abit of a shocker

Really didnt see that coming

[Patsy164]

Sorry to hear your news Lulububs it must have come as a shock. There must have been a mix up at your surgery which has made matters worse. The team at BLF should be able to point you in the right direction best you get the correct info. All the best xx

[peege]

Hi, the blf help line is 03000 030555 UK office hours, there'll be an OGM giving you contact details if they're working from home

Alpha 1 deficiency will predispose a person to copd. I think there are more than one variations I'm so sorry I can't help you more but at least you can find out what you can do to

protect yourself for the future. Never trust a receptionist to give you results, always ask for the gp. How lucky your vigilant gp called, I'd done that once and it was 10 years before I discovered a diagnosis, all that time I could have taken precautions to protect myself. (It was osteopenia not lung related).

Wishing you all the best. P

[Lulububs]

Thanks everyone... i rang gp and basically told them

I was furious a receptionist told me i was clear and all long i was not.

They made me go to the doctors and apologised and explained abit more...

as u said peege it is like a case of copd but its strange in that im 46, run 10-15 miles a week, have no symptoms whatsoever?

Thats why im so shocked...

Got to go back for bloods again tomoz see whats going on.

[HungryHufflepuff in reply to Lulububs]

Good luck for tomorrow 🤞 Wishing you all the best.

[Croydonia]

Hi, I was diagnosed with Alpha 16 years ago, and now have severe COPD.

I lead a normal life, just use two inhalers. Although at the moment I am shielding, I usually go out socially, look after grandchildren and do two exercise classes a week, as well as walking on my treadmill most days. So you see it’s possible to lead a normal life with Alpha, so as long as you look after your health and keep away from anyone who is ill, you’ll be fine!

[JeMo1961]

I have recently been diagnosed with Alpha1, there is a good Facebook group to join they send you a welcome pack with a lot of good information, I've to go for lung and liver function tests but I can't get them done at present until this virus abates and hospital treatment etc can begin again, also severity usually depends on if you have 1 or 2 genes affected, but it isn't always the case, some Alphas can find themselves liver affected as the aat that is produced is deformed and gets stuck in the liver and causes scarring. If you search Facebook for Alpha-1 Awareness and ask to join.

[Lulububs in reply to JeMo1961]

Hey Jemo1961

Im sorry to hear you have been diagnosed to...

How do you feel?

I felt totally blindsided yesterday it came out of nowhere esp seeing as the test were for something totally irrelevant.

Im back in to have bloods done today( i really got to say im not happy about keep goin to gps at this time but they seem-very up on all the guidelines of ppe) this is goin to a actual special LAB for liver/lung issues as even my drs are

Abit perplexed in that i gone 46 with no issues and i still have no issues.....

My AAT was 0.9 or something.

I hope u get in to see someone soon....

It all a scarey time isnt it ..

It was bad enough but i think i now feel worse as if i do have this i may get hit harder if i get covid.. do u feel this way?

[JeMo1961]

I don't even have all the info, it was receptionist who called to say Dr told her to call me and say that I needed to go for tests, I said so I have Alpha1 then and she said yes, I asked what was my phenotype and she couldn't tell me, said Dr wouldn't be available for a few weeks as she was working at covid Assessment center. I know all about it as I have a cousin who had it, then my son got diagnosed which meant either me or husband had it. It was me. Apparently you can go through life and have no symptoms and others can have loads my son is a MZ and he is liver affected. I haven't a clue yet what I am,bum going to call gp again.

[Lulububs in reply to JeMo1961]

How strange ... they told me it was genetic but all my family live into there late 90s?

None have any of the symptoms all fit as fiddles( why do we say that lol).

Yeh i got told me bloods were clear three weeks ago then gp rang me and was moaning i had not called in.. i said i did ...

Think they were abit scared i would really complain but at mo there to much goin on to complain...

They did say to me it genetics, if my dad had it and my mum was a good gene ur not gona get it so bad but if she had a gene that wasnt compatible with my dads gene it would make the child more symptomatic? Something like that....

[JeMo1961]

blf.org.uk/support-for-you/...