I need help as my daughter suffers with severe breathlessness and also had breathlessness attacks which are asthma attacks. I need advice from anyone how
to prove this to the medical team that this is asthma and very serious as you can’t take inhaler when you are having that severe breathlessness attack and could be deadly.
It has been diagnosed that my breathlessness is asthma related four times.
1. The first time they thought it was cardiac related, so they did all the cardiac tests, and on the basis that it was not cardiac, diagnosed asthma. This still confuses me, to get an asthma diagnosis, with a letter prescribing an inhaler, from a cardiac consultant.
2. I was then referred to an asthma nurse, who then diagnosed asthma, on the basis that she could show the inhalers substantially improved my peak flow. This was during covid when my hospital lung department was all but closed.
3. The third time, was at a specialist unit, who said my feno test reading proved it was asthma.
4. The fourth time my new consultant diagnosed it, on the basis of a medical history.
So in practice each medic seems to take their own approach.
I am now diagnosed with severe asthma with poor control, without ever having what I would call a definitive test.
Personally I want them to do the spirometry pre and post taking inhalers which to me is the way to prove asthma.
I have had spirometry twice, once was clear, once was bad for lung capacity, so they are now doing more spirometry but with no indication of what precisely for.
On taking inhalers when having a severe attack, get the biggest spacer you can. I find them much better when it is nasty.
Good morning My_fairy. I was diagnosed as having Asthma markers from a blood test. So not sure if your Daughter has had this done and should then be on the inhaler to help her more. Hope you get things sorted out. Brian
thanks Brian yes she did have bloods and I believe it shows asthma markers therefore she’s eligible for biological treatment .. do u mean IGE level I am not too gods with terminology but I think it’s these markers
I was diagnosed using the ventolin reversibility test, so take a best of 3 peak flow, then take a dose of ventolin, wait 15-20 mins and redo the peak flow. Asthmatics should have a 20% (I think, it was a long time ago) improvement in the peak flow. You could check this with the asthma uk nurses.
yes she’s diagnosed asthmatic after attack it’s even more than 50% reversibility
It's 12-15% from baseline or more (different guidelines have different cutoffs though I think 12% is more often used). My_fairy it sounds like your daughter is well over this so I have no idea why they keep questioning it!
But from experience I find we have to prove we still have asthma frequently, but if one person decides one time it's something like dysfunctional breathing then it sticks forever.
thanks, it's about 20 years since that test so not surprised I was a bit out, plus I didn't really believe the diagnosis at the time having been asthma free for about 30 years and it feeling very different. My GP at the time referred to me as the reluctant asthmatic 😂
Ha I get you, I was convinced I'd grown out of mine by uni so had no inhaler. Looking back, I definitely had some episodes at uni and was lucky to get away unscathed with my complete ignorance! Then when it did come back after swine flu I kept being told it wasn't asthma (it was).
I had a lung function test. This shows at what percentage of capacity the lungs are operating. If the lung function improves after taking ventolin, this is shown as evidence of asthma.
yes it improves all the time
What are they diagnosing her with at the moment? Have they suggested any alternatives?
Unfortunately, you do often have to keep pushing for a diagnosis - I was brushed off as suffering from 'Covid related anxiety' for two years before someone finally thought to check the difference in my peak flow before and after Ventolin! Keep going back until you get some answers. You might also find it helpful to call the Asthma Uk helpline for advice - they were great at giving me helpful phrases and questions to use in my discussions with my GP surgery - sometimes, it's not so much what you say as how you say it that gets results!
thanks for your reply it is definitely helpful.. I will do
they keep going back to dysfunctional breathing to prove their diagnosis when all of her symptoms are asthma related
Can you ask for a referral to another consultant? They can differ even within the same hospital (my experience). Or, you can see a private consultant with a double affiliation who then can help you get back in onto the NHS.
yes this is what happened they differed within the same hospital .. I wasn’t happy with diagnosis as difficult asthma so we saw another consultant when biologic helped her. He said severe asthma in his letter but as soon as biologic failed he is trying to change it to asthma and dysfunctional breathing as there’s been a lot of negligence in her case from secondary and due to their errors tertiary didn’t make right decisions aswell when she was assessed ….her case has been messed up and now they want to prove themselves right by writing misleading letters and hiding important information on letters i.e. lung function/feno.
They are trying to force us to accept the diagnosis ..now the issue is he’s top most consultant here working for NHS and privately I believe noone will challenge him or even take on her case due to complex nature but he’s not saying the truth anymore… her condition is very bad she’s taking daily reliever symbicort and still has bronchospasm frequently and they have offered another biologic but we don’t know if it will work or again be a secondary failure like before then what options we are left with… it’s a very tough situation and I know they are being dishonest knowingly as I pointed out their mistake of giving her steroid injection when she’s therapy severe resistant asthma… they keep going back to dysfunctional breathing when it was first diagnosed in a life threatening asthma attack
Have they offered help for dysfunctional breathing? There are trained respiratory/ speech + language therapists who may help yr daughter x
Variability of the spirometry test from day to day (while off steroids) and the improvement of the test in response to ventolin did it for me. I understand that taking the inhaler can cause airway constriction, but in the hospital they can manage that. They can also test for elevated IgE and elevated eosinophiles.Improvement of symptoms in response to oral steroids. There are also the metacholine test and the exercise challenge.
thanks.. never had metacholine but exercise challenge was done
They say metacholine can be quite uncomfortable.
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