I am currently under the severe asthma service at Wythenshawe in Manchester. I transferred there in 2020 when the previous service I was under diagnosed me with severe asthma based on eospinohils washings amongst other things, but apart from giving me steroids did little else and I ended up developing adrenal insuffiency.
So went to Wythenshawe who agreed I had severe asthma, I had reactions to mixed mould/aspergillus etc on blood tests, IgE was abnormal, FEV1 was below 80% so they put me forward for Xolair in 2021. I did the 16 weeks trial but sadly made no difference - and my asthma continues to flare up in warm weather meaning every summer I end up taking multiple courses of Pred, except this year due to the cool weather I was ok. But did have a bad flare last autumn needing 3 lots of Pred and a nebuliser I bought off Amazon.
Last year I had a reversibility test which I "passed", as in my FEV1 didn't drop by 15%. Ever since they have been quite stand-offish and wouldn't help me last autumn when I was at the GP every other week with asthma. They kept telling me by email it couldn't be asthma as my peak flow wasn't dropping by much (it never does...) Even the practice nurse writing to them didn't change anything. They gave me another reversibility test (Mannitol this time) in June this year and because my FEV1 dropped by 9% not 15% they are now totally convinced I do not have asthma *at all*. My FEV1 improved once they had given me Salbutamol at the end of the test which shows reversibility but that doesn't seem to count...
When I saw the consultant in July he was making out that waking in the night feeling breathless was "normal" as apparently it happens to him sometimes; his eosinophils - which I was told to look out for a level of 0.3 or above for other biologics - is 0.7 (I did actually get a reading of 0.3 this summer). When I asked him did he take asthma medication he said "no", when I asked had he ever curtailed foreign holidays in warm countries as I have because of my asthma he said "no." When I asked did he have a 40 year history of asthma he said "no".
When I asked him what was causing my symptoms - wheezy cough, tight-chest, breathlessness - he said "well you are a bit of an anxious person". This has come about because I saw the psychologist they have seconded to them, as I was anxious *because* my asthma hasn't improved and I felt frustrated that I am getting nowhere. He has twisted that as "proof" I have anxiety and that is what's causing my symptoms. When I asked what to do if I woke up breathless he said "do nothing" which obviously I was shocked at. He wanted me to go down from Seretide 500 twice a day to Seretide 50 twice a day (!) and then eventually use a 100/6 Fostair whenever I needed it , which is bizarre when he says I don't have asthma at all...I explained I've tried Fostair in the past 3 times but he wouldn't listen. Eventually after 15 minutes of this I walked out as I was so frustrated.
I complained to the hospital and, no surprise, on every point they have backed him and said he has done nothing wrong. Even when I had a bronchopscopy there in 2021 when they found bronchospasm in my right lung he said it was "probably mis-appraised."
When I asked him why I would feel "anxious" only in the summer, or on holidays, when my asthma has flared-up he couldn't answer. But he will just not budge.
I have sent some follow-up questions, such as when I stopped my Seretide for 36 hours before the tests why did I need Salbutamol the night before and the morning before if I didn't have asthma? (it was outside the 6 hours window to stay off it). Last autumn when I was poorly I did some CBT through the local talking therapy service, and my anxiety scores went down dramatically after the sessions had finished yet I still had bad asthma at the time, so I have sent as proof that itcan't be anxiety causing my symptoms.
I have a feeling this won't make any difference, I feel like I am being bullied into stopping inhalers even though I know I have asthma. He seems to want it both ways, getting me off of his list as he doesn't know what's going on but giving me Fostair to cover himself in case I have an asthma attack. My GP fortunately has kept me on my current regime but I am concerned that she will feel the pressure to follow the consultant if nothing comes of this follow up to my complaint. Is there anything else I can do, the letter mentions going to the health ombudsman if I am not satisfied. I feel very frustrated as I feel like I am being gaslit.
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Hi there, I have read your post multiple times as it does take me an age sorry to digest. Sorry you are going through such an ordeal, but im unable to suggest much. There is a great post on here and I hope I have managed to post to link correctly.healthunlocked.com/asthmalu...
I have had VERY similar experiences in the past. To the point I completely lost myself and cried my way out of an appointment one time. I am not an anxious person but I completely understand the anxiety around not being listened to or understood! I then stopped taking my preventer and, long story short, wasn't long before I had a major asthma attack and was back under consultant care. Thankfully with someone different...
My over riding reaction is to find another consultant. I realise this isn't easy but that's what needs to happen.
As for all the test to determine asthma. I always get good marks on breathing tests because they're always carried out when I'm "well". I have high Ige for certain pollens and in general have asthma that is triggered by pollen or viruses. Thankfully I have an amazing allergy and asthma consultant now but it has taken a long time to get to that point.
Don't give up finding the treatment that works for you x
I'm so sorry to hear what happened to you, that's my fear if I do as I'm told with my regime that I'll get really ill and the A&E staff will look at my notes and say "well you don't have asthma". I think another consultant is the only option. Hard enough having asthma without all this, isn't it? My asthma sounds very similar to yours and having tests done when I'm well isn't very useful is it, especially when they base their opinions on them.
It is difficult and has taken years to have the confidence to stand up for myself. I'll admit I still get nervous asking for help for fear of being told my asthma is fine. I do hope you can find a more helpful doctor x
I just want to say that I really feel disappointed and bewildered on your behalf. An unbelievable way to treat, in every sense, a patient, especially one who has already been assessed as qualifying for biologics.
Blue Breeze has referenced an excellent post by Emma. But I would recommend calling the Asthma UK helpline on 0300 222 5800, today if you can.
Normally, I would say make a formal complaint to PALs, but it sounds as though you've done this. You are entitled to a second opinion and your GP can make a referral to another consultant, stating that you're seeking a second opinion. A different hospital, if that's possible for you. I've noticed that Preston and Dr Aashish Vyas had a glowing recommendation in a previous post about accessing treatment in NW England. Dr Aashish Vyas lists severe asthma as a specialism. Hopefully others will have their own recommendations.
Sorry for your nightmare, it seems your relationship with the consultant has broken down. You are allowed a second opinion. Reading about this illness I believe it can change and any treatment can change to compensate, this is not instant. There does seem to be an overarching principle to step down treatments if symptoms /data improve.
It is certainly not an exact science. You are bound to be anxious about what has happened but hang in there.
I would discuss it with your GP and ask if he or she can refer you for a second opinion.
I have had four varying diagnoses of asthma by hospitals in the last three years. I have had,
1. Asthma
2. Severe asthma
3. Difficult to control asthma
4. Difficult to control asthma with a ILO as well.
So wherever I go, I get a different diagnosis. I think number 4 is the correct answer.
To me it just shows how difficult asthma diagnosis is, and maybe my asthma changes over time. So go and see a consultant you can have confidence with. Hopefully your GP will arrange, try to go to a different hospital.
Few other comments.
1. Asthma UK do some good, free, online courses. Including for mindfulness. Their helpline is also brilliant.
2. I saw a respiratory physio privately, who helped me understand the differences between asthma, Ilo and anxiety, in terms of how they effected my breathing. She then greatly helped me manage my breathing better with various exercises.
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