How to approach doctors to test for CF?

Hello! At first this may sound a bit hypochondriac/Google-patient but hear me out! Sorry for the long post too, it's a long story as they say!

I'm 19 years old, and when I was a just few months old I started getting chest infections which I needed hospitalisation and nebulisers etc for. When I turned 2 years old and allergies were discovered it was diagnosed as bad asthma and all my life I've been on increasing medications for asthma.

However I have never had an asthma attack..

I know when I need meds increase because I chest infections get more frequently and I get worse coughing fits (coughing up mucus). I'm now on all medicines apart from daily steroid tablets which I need whenever I get ill. I'm on montelukast and seretide 250 and Salbutamol at least 4 times a day. I've always had chest infections minimum once a year but that's increased in recent years and now I'm just coming down with my third chest infection in 4 months despite antibiotics. I pretty much permanently have colds, bronchitis or sinusitis (and lots of -ituses).

I've always been very active - running, climbing, pole fitness, swimming etc - but in the last year I've started to struggle. I can't exercise outside because my lungs can't take fresh or cool air, I can't do anything too cardio related, I am tired all the time from constant coughing.

I've always suffered from bouts of nausea, constipation and diarrhoea but in the last two years it's got ridiculous. No IBS medicines work and coeliac has been tested for and ruled out. I get steatorrhoea, constipation for days on end and horrible, horrible bloating and pain after eating anything fatty. I'm also very deficient in Vitamin D taking 2,000UI of it a day to start with and have a follow-up review in a few months and I'm showing symptoms of Vitamin A and K deficiency but not yet been tested.

My sinuses are constantly blocked and doctors change their minds between post-nasal drip and sinusitis every few years.

I get reflux every day which is sometimes burning and other times I just know from the taste or regurgitation.

I've never been stick-thin but I've also definitely never been fat - a year and a bit ago I unexpectedly lost quite a lot of weight (over Christmas somehow!) but then not long after got thyroiditis and an underactive thyroid which took 8 months to clear up with medications so the weight loss slowed then, but now I'm starting to drop the kilograms again without trying.

I've always been seen by Southampton's respiratory teams and have an appointment in February because of continuing problems. I know a few people, coincidentally, with cystic fibrosis of varying degrees of severity and the similarities between our medications and complaints is shocking. However I don't want to either embarrass myself by asking a consultant whether I could have a relatively mild but needing treatment case of CF, or waste anyone's time but I'm really struggling with my health and as I've just started a nursing degree I need to get things sorted sooner rather than later.

I was thinking of trying to see a GP first to see if they can arrange a CF test so I can either clear my mind (I'm literally losing sleep over it) or take iffy results to my respiratory consultant appointment.

How do I go about approaching the doctor about it?! I feel like they might laugh in my face or say I'm just being stupid but I won't stop thinking about it until they either 100% rule out CF or find out what really is causing all my various ailments.

Sorry for the long post, I'm fairly desperate for help, I'm sick of not being able to take a full, comfortable breath. Basically I've got a lot of CF symptoms, more so than asthma and IBS put together, but I don't want to be a pain to doctors or look silly if I'm wrong (which would be great if it turns out to be something easier to treat!!)

Please help!

Thank you, tealover x

35 Replies

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  • Hiya tealover. First things first. Your GP is being paid over £100,000 a year by you and people like you. So write down all the things you want answers to, make an appointment then sit and ask your questions. Don't worry how long it takes, you can always book a double appointment. But it is important to remember that all these people work for you, they are not doing you any favours for nothing so ask straight out about your illness. Good luck with it.

    Bobby

  • Hi Phillips1! Thank you for your reply, it's really reassuring and the writing stuff down idea is a good one - you sound very confident and I will try to be too!! Thanks :) x

  • Reading the first part of your story was like reading my own. But , I have bronchiectasis and have had it since early childhood. I am wondering if they had considered this?

    Also,recently new consultant, who also deals with CF patients decided to 'start again' with my diagnosis and tested for all sorts - including CF. It was a sweat test, I think, and it showed no CF so she didn't bother with the genetic screening. She said that some people with bronchiectasis can have some elements of the CF gene without having CF. Still don't really understand it.

    If you are really worried, talk to your GP or consultant and tell them your concerns. I know it is hard to talk to the 'bosses' sometimes especially when you are young (and even when you are older tham them!). Write down your symptoms and concerns as an aide-memoire.

    And don't apologise - we are all guilty of the dreaded Google! Drs just have to accept the digital era.

  • Hi happyfeet59, no I've never had anything other than asthma considered to my knowledge, they just kept upping my asthma meds whenever I got worse! Oh that does sound a bit confusing, maybe it's carriers of the gene or something like that? Your reply is very helpful, thank you for understanding! x

  • Hi flibberti, thanks for your reply! I think you're right, I'm going to wait until I see my consultant to ask for things as he'll be in a better position to and getting referred for the tests to Southampton from my GP in London would be another battle..! There's so many lung and digestive conditions that present with symptoms similar to one another, it really is like solving a mystery with few clues. It's good to know that Southampton is good for that, I was under paediatrics until a year or so ago so only just moved to the respiratory unit proper! Thanks again :) x

  • Hello, I'm sorry you have had such an awful time and from such a young age. Your symptoms are so similar to mine I wonder have you been tested for Bronchiectasis and COPD. Don't be afraid or embarrassed to speak to your GP, it is your health, your body and you have the right to query and question. Very best of luck to you.

  • Hi LesleyAnne, I'm fairly sure I've never been tested for anything along those lines, the asthma diagnosis had been there for such a long time by the time I can remember my appointments - I think I had an x-ray once when I had a really bad infection (to show that I had an infection) and lung function tests on visits but that's it. Thank you for your reply, it's good not to feel alone in all this! x

  • Everything you have written shouts 'thyroid'. If your thyroid isn't working properly, nothing else will. You need to find a decent G.P., somebody with knowledge about thyroid conditions and get that sorted and the rest hopefully will follow.

    Good luck!

  • Tealover has probably not been adequately medicated, which would result in the problems she has. As I said earlier, if your thyroid isn't working properly nothing else does either.

    I know from experience!

  • Hi Margo (I love that programme!), my thyroid tests showed up quite underactive during the thyroiditis and borderline for several months after that, it was a battle to get any treatment at all and in the end I only got two months' worth of thyroxine but since then I take thyroid supplements daily and have a follow-up endocrinologist appt in February too - I do think that the thyroid troubles have happened too close to everything else that had been around for years going wrong to be completely coincidental, I think maybe the toll that took on my body aided everything else deteriorating... all guesses of course but I do think we know our own bodies more than we think and gut feelings shouldn't be ignored!

    Thanks for your reply, I hope your thyroid troubles are being optimally managed and you're doing well, it's a horrible part of the body to go wrong! x

  • Your problem is your thyroid, once that is sorted better health will follow. Supplements will help but you will probably need to take medication. Some people do well on Levothyroxine others do not. I am one of the latter, I take Liothyronine and it suits me better. I got better, including lung problems when I took charge of my own health, and did not listen to doctors.

    I suggest you get copies of your blood tests and post them on the thyroid site here. There are some very knowledgable people on there that will decipher your results and point you in the right direction.

    Good luck and don't let any doctor stand in your way.

    Wishing you good health for the future. x

  • I don't doubt that my thyroid is fairly borderline of normal levels but I've had the respiratory and digestion problems long before I got the thyroid infection! Besides, weight gain was one of my thyroid symptoms and now I'm losing it again - I think at last blood test my TSH was about 2 so back to okay again, the thyroid site here is very good and has a facebook page attached which is fantastic too! If you're not on it already search Thyroid Friends UK or ask on the HU Thyroid UK site here :) Thank you for your support and kind wishes, hope you also have the best possible health from now on :) x

  • You would be better to have TSH lower than 2. 1 would be better.

    Good luck!

  • Someone I know son had 'severe asthma' all his life. Number of trips to hospital (Brompton which meant to be best in country!)After they moved he was seen by new consultant / hospital who decided to test for CF. He was diagnosed with condition at 22yrs! So IS worth asking to be tested together with what others have suggested.

  • Hi Bevvy, wow that is quite a late diagnosis! Glad it was caught. It's those sorts of stories that help me to not wimp out and follow my gut feeling to at least ask to rule it out. I have a few friends who are treated at Brompton, if I was going to move clinics since moving to London it'd be to there :) Thanks for your reply! x

  • Hi tealover, you have had some great advice on here so hope it helps. Never be concerned about asking your GP about anything at all as that is what they are there for. Making a list is a great idea and hopefully you will get to the bottom of whatever is wrong with you. Good luck and please keep us updated. Wishing you well and take care. xxxx

  • Hi sassy59, thanks for your reply, it's really kind of you - definitely will be making a list! thanks and take care of yourself too :) x

  • Many lung conditions have similar symptoms. Have you had a CT scan of your lungs? I have bronchiectasis and many of your symptoms sound similar to mine. My bronchiectasis was diagnosed by a CT scan - among other things.

    I would suggest writing down everything in the way you did here, if need be hand it to your GP or ask someone to go with you. Ring the BLF helpline and ask what tests you should ask for to get a diagnosis.

    Good luck.

    Judith

    My younger daughter is in the last few months of her nursing degree and loves it but it is a lot of work.

  • Hi alanjudy, no I've never had a CT scan for anything! I once had an x-ray when I was younger at an outpatient appt as the doc wasn't sure if I had an infection and I was sure I did and the x-ray showed that I did! Aside from that I've not had any other investigations for anything lungsy. I didn't know there was a BLF helpline, thank you for bringing it to my knowledge!

    I've just started in September, really enjoying it so far and want everything sorted out so I can be nurse more often than patient ;) best of luck to you and your daughter with her degree! x

  • Hi tealover

    What a terrible time you are having! As everyone tells you - write down your concerns - all of them! You have every right to a complete picture of your health. The only thing I would say is to also have your IBS looked at again, ask for a scan because it is probably diverticulitis; I found this out from asking for a scan and now with watching which foods I eat I am fine - in fact have put on so much weight am thinking of going on a diet. Good luck to you.

  • Hi emmo, yes I am annoyed about the IBS as I feel it hasn't been very looked into.. I had a blood test for coeliac which they lost and then found again, and one GP had a poke of my tummy but other than that they've just tried things like mebeverine or lansoprazole which didn't work or made me feel worse! Glad you've got to the bottom of the diverticulitis, that can be really nasty if not found for a while, I treated a few patients on my ward placement with that. Good luck with the diet too ;) thanks for replying! x

  • I know how you feel I started to bruise purple in colour I would have a red rash over my forehead and under my eyes then some mornings I would get out of bed feeling like I had the flu every joint in my body was painful, that was 6 years ago and I'm still the same now I'm told its because I take steroids I started steroids 4 years ago when I had a real bad bout of flu. Doctors make me angry if they don't know what the problem is they don't want to know I have given up now trying to find out why I bruise and have painful joints good luck I do hope you get to the bottom of your problem.

  • I bruise really easily so I know how annoying that can be! Have you had your Vitamin K levels tested? A lot of clotting factors for blood rely on Vitamin K and if you're low you can bleed lots (eg bruising). Good luck with getting well and thank you! x

  • I also bleed for hours when I cut myself but I'm worse in the sun I bruise so much more

  • Hi Tealover. I have just read all the others post. They have given some good advice. All I want to say is stand up for yourself. If you're not happy with what the Dr says then tell him so. You need to get control of what is wrong with you. My sister suffers from IBS and is taking Omeprazole which funny enough she says helps control it. It's just a thought. Take care. X

  • Hi Mavary, thank you! I am great at going straight to consultants on wards about a patient if I notice anything but when it comes to myself I can be a bit of a coward... I had lansoprazole but it made me feel really really sick so I couldn't take it, perhaps omeprazole would be a good option. thank you and take care of yourself too! x

  • All others have given good advice, especially ask your GP, and ask him also to be seen by a consultant for a formal diagnosis.

    I searched Cystic fibrosis society in UK. Here's a link I found;

    cysticfibrosis.org.uk/?gcli...

    BLF could advise you as to how you should ask your GP. I hope you find help very soon.

    And come back to tell of your progress.

  • Hi helingmic, that link is great, I did see a forum thread on adult diagnoses and read a lot of people saying that there are so many variations of things like CF that it can present in all sorts of ways. Thank you very much, I'll reply on this after my appt in Feb and hopefully it'll be good news! Hope you're well x

  • Tealover, don't worry about looking silly if you are wrong. As long as you get a proper investigation into what your condition really is, you won't look silly.

  • thanks poemsgalore, I guess the consequences of not asking when I need to override the consequences of being wrong! and if nothing else it's ruling things out right? thanks again x

  • Hi tealover (me too)

    It doesn't appear from what you have said that you have had many, if any medical tests to diagnose with any certainty.

    Re your continuing and worsening problems with nausea, constipation and diarrhoea, if I were you I would as your GP to either refer you to a GI consultant or arrange an endoscopy and colonoscopy and ask re an abdominal scan. If he/she is awkward you could explain you are concerned it has worsened and would feel happier if everything else were illuminated.

    However I agree with flib your GP is not the right person to arrange a test to check for cf. I have put up a link of cf specialists at Southampton. They will also be specialists in non cf bronchiectasis and general respiratory. Check if your consultant is one of them. I am shocked you have a respiratory consultant who has not arranged a ct scan. Any cf consultant worth his/her salt would automatically these days arrange a sweat test at least to check for cf. I was dx as a baby with non cf bronchiectasis but when I was 6os my new consultant at that time arranged for me to have one and he had just dx a lady in her 60s and a gentleman in his 80s. The simple answer to your question is ASK but make sure you choose the right consultant even if that means changing.

    Please don't worry about being thought of badly. I feel they will be pleased you are taking the management of your own health seriously and see it as a positive. Fight your own corner in a nice calm but assertive way hun. Write down in bullet form what you want to know or say. Don't make it long winded or you will get muddled.

    Good luck tealover - it's your life and your health - go for it and let us know how you get on.

    With love

    cx

  • uhs.nhs.uk/OurServices/Resp...

    Doh! forgot the link.

    cx

  • Hello Tealover, like a lot of replies here I have a similar story , similar symptoms and was diagnosed with Bronchiectasis last June. Be firm with your health care provider, and look after number 1. All good wishes to you .Holly.

  • i would most definetly get acessed by doc or ask him to send you to hosp for test or even ask if he thinksd it could be c o p d .

    but as for sickness and diarah sorry spelling bad it can all be put down to all the medication but if you have a fachial steamer use it daily will cleatr mucos help no end but we cant dinose you u have to go to docs but there is a great deal we can all do to help ourselfs hope this may help you

  • Yeah I think it's defiantly cf because you get a lot of the syptoms and if you've never had an asthma attack and also I have a lot of excess mucus problems but I have bad asthma. So go to your doctor then they can help to give you the diognosis.

    Good luck

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