Still Struggling to understand

I have spoken to a nurse from BLF and she suggested I go back to my GP and ask for Alpha 1 blood test and CT scan. I have done that and not really got anywhere told she cannot authroise that blood test as not on system and only done from consultant at hospital and CT scan is not necessary as diagnosed from xray and spirograph and I do not need one sorry just ranting a bit as I am sure you will all understand

15 Replies

oldest • newest
  • Hi if you are under around 35, or have close relations with copd, or have never smoked or lived with second hand smoke then you should automatically be tested for the Alpha1 genetic test..

    If you fall outside those categories then you might not qualify for it. I can't see why they can't give you one anyway as it's just a simple blood test. If you think you want it then ask a doctor and not a nurse.

    Let us know how you get on.

  • Hi I fall under the cateegories except for the age It was my doctor I asked and she said that it is not on the system to order for that blood check she looked it up on computer while I was there. It was the BLF nurse who said I should as for it although she did say it was unlikely to be that because of my age it usually is younger people who it affects.

  • Hi I would try asking your respiratory nurse then. My doctor insisted I didn't need a pneumonia jab. The nurse asked me if I had had one and when I said no and told her why she tut tutted and gave me one straightaway.

  • Yes I have already had the pneumonia jab just rang up and asked for it as I said I had COPD I was able to have it. Got the info from leaflet BLF sent me which suggested that I have it.

  • i can see what your doc is saying is not necessary for you to have. but if you want to have them done you can pay/go private.

    i had been reading a lot on this site about people having ct scans, it made me feel that i was not been treated properly.

    i asked specialists at two diffrent private hospitals about it and they both said the same thing. i did not need it and id be wasting my money.

    i have copd+asthma.

    its very frighting when you are frist diagnosed and it still is 3 years down the line.

    theres only so much that doctors can do for us in the way of medicine. the rest is down to you/me .

    learning all you can about your illness will help you with knowing how to go about slowing the its progression and give you better and longer life.

    i wouldnt look else where other then this site for what you need to know..its all on here. just take your time.

  • You GP is not very good. A locum at my gp surgery ordered a test to check my alpha 1 levels. It was back 5 days later confirming very low levels. Subsequently my mother, 2 brothers and niece - all registered with different gp surgeries across England and Wales were tested for Alpha 1. I have two defective genes, my mum, one brother and niece have 1 defective gene. Thats 5 gp surgeries and no consultant apt required to find this out.

  • I was tested for Alpha1 deficiency soon after diagnosis and was told it was routine. I am also aware that properly diagnosing COPD involves a spirometry test and a CT scan. The BLF nurse gave you great advice. I suggest you think about changing your doctor.

  • I'd be inclined to ask the doctor what exactly what this system is that she has on her computer which seems to be lacking in some respects. :-o

  • Thanks for all your comments I just find it all very confusing especially not knowing why I have it. Its hard to know what to do for the best I do not like to keep bothering my GP I did see a different one this time to the one I saw before but still did not get anywhere I did think about going private but not sure if it is worth it.

  • I believe the alpha 1 test can be done via the post with a spot of blood via the Queen Elizabeth University Hospital, Birmingham. As far as I'm aware it's free for the patient.

    See below for the details and the link...

    uhb.nhs.uk/family-testing-f...

    Family testing for alpha-1 antitrypsin deficiency (AATD)

    Since alpha-1 antitrypsin deficiency (AATD) is inherited it is important that family members of patients with AATD have access to genetic testing. We are able to offer this service using a fingerprick blood test, and can send the materials to do this through the post to you/your patient.

    If you would like access to this service please email us with your details, and those of your GP. It is also useful if you can tell us if you have any diagnosed family members already, and if they are known to our service.

    Email: ADAPT@uhb.nhs.uk

    If you are a healthcare professional, please tell us when you request a kit if you would wish us to follow-up with offer of an appointment to our clinic to your patient should the test be abnormal.

  • Hi Zorro1 just like to say thank you as I e-mailed them and have had a reply already asking for my address so that they can send me a kit to get the Alaph1 test done so will let you know how I get on I am not expecting to have a possitive result but would like to just rule it out as that then only leaves passive

  • It will be good to rule it out - one less thing to worry about. I just wish you had more support from your GP. Please do let us know how it goes. There's always someone on here to listen. x

  • Alpha 1 b/t is in the blood of my family on my dear mums side & everyone who smoked developed COPD CT Scan only done when there is real need for it & they woulld not do one for me even though I have COPD that way. Have you got a contact number for Chest Clinic you have been referred to? If not ask if you can be referred XC

  • Hi no I have not been referred to a clinic

  • change your doctor as you must be referred too specialist for more tests my ct showd my tumour didnt know about it...insist on seeing consultant...its your life them playing with...im sick off hospitals but my respirtary is very important...and i have support off three lung specialist i carry a card so i can ring them day or night...and they do ring me back...insist on seeing a different doctor good luck

You may also like...