Hi, I'm wondering if anyone else has eosinophilic asthma here and been referred to a severe asthma clinic in the past? My eosinophils are constantly high and the hospital consultant has now referred me to the severe asthma clinic as we're out of tier 2 treatment options. The last few months have been horrendous and I'm off work. I'm REALLY struggling with tiredness to the point of not even being able to think straight. I also have developed sleep apnea and hypertension. Here's the thing - I'm coughing sputum constantly, have asthma attacks, wake from coughing, treatment resistant, no infection coming up, high count of eosinophils (0.8), out of breath etc but when she listens to my lungs they sound clear. I don't understand this. I feel so hopeless, tonight i cried because I feel so isolated and a shadow of my former self in terms of what i could do daily. I'm constantly exhausted. I'm seeing the severe asthma clinic team on July and I'm scared that they also won't be able to help. Has anyone else had the same experience and got help? Greatful for any replies, feel very lonely in it all.
Severe Asthma (Eosinophilic) & Clinic... - Asthma Community ...
Severe Asthma (Eosinophilic) & Clinic referral & Fatigue
You sound similar to me. Just take care of yourself. Try to relax it sounds easy but can be hard when you have breathing issues. Take small steps, bit by bit you will get there by staying positive. Best wishes.
Thank you for replying and letting me know I'm not alone. I don't know anyone who has the same complications and it makes you feel very isolated. Did you receive help at a severe asthma clinic?
I see a chest specialist and cardiologist, try not to worry you will get help.
Not esoniphils, but yes referred to asthma/respiratory who did loads of tests and couldn't find anything at all (bless him, he really did try) ... back to gp who re-reffered me and it was the same respiratory guy who said we are going to need to refer you on as we did everything we could last time.... ive been with the severe asthma clinic over a year now and yes... they found stuff, changed treatment added stuff in for good measure
But like you I don't often wheeze and quite often have mucus and quite often (every 2-3 months on average) get chest infections ... they found I have large airway collapse and are assuming I have a mucus asthma subtype (didn't even know that was a thing until recently) ... and the two don't play nice together
I will say however the first time I saw the severe asthma team they said "all those tests you've had done I think its a good idea to run them all again" ... in my mind that was because they didn't have a clue... in actual fact they have added all the tests I've had over the years together (I've been in and out of various hospitals for 7 years) and correlated the results and although I've had two negative challenges (methacoline and mannitol, indicating I don't have asthma) all of the spirometry and lung function tests I had had done at various places showed "quite the variance, so we are sure you have asthma"..... which was nice to hear when I've had everything from its psychosomatic to my heart but its not my lungs
Thanks for sharing your experience. I'm often told i do relatively well on my spirometry but i don't understand how when i cough my way through it. We shall see what they say.
I've been told my spirometry is "normal".... it is if you don't know what the massive dip towards the end is (the airways collapsing and then they re-open as the last of the air is forced out, so it looks a bit like a U along the line)
I very much dislike spirometry for this reason. I never understand how someone can be symptomatic and have normal spirometry. In my cade I've deteriorated so much (antibiotics and steroids monthly etc) and still spirometry is always "relatively good". Makes me feel insane.
Thats how I got.... can't breathe and doctor is going your chest is clear, your Sat's are good, no pleural rub.... I even had a doctor tell me more than once I needed an ECG as it must be a heart problem.... it isn't
Just out of curiosity does your heart rate rise when your heart rise when your unwell?
When i had an ECG it shows that i have a premature heartbeat (that's the term they described). I have this too! Chest i clear but i cough daily, wake from coughing at night, have asthma attacks, cough up sputum daily. Bloods show consistent high levels of esinophil count. I don't get it 🤷🏻♀️do the severe asthma clinics do diff tests?
No but I think its a case of they know what they are looking for .... my spirometry has been seen by every man and his aunty (everyone has done it from GP to Severe asthma clinic and everyone in between).. the head of the severe asthma clinic says I've reviewed your spirometry and based on this I think its this but we need to confirm it with this..... and it was confirmed the large airway collapse and my IGE is always high but my esonphil count is always low and everyone else has done the same tests but they have correlated the results and said based on all the data I do have asthma and they think it's a mucus producing type (ace, beats me being crazy and imagining respiratory problems)
Now the first respiratory team I saw the spirometry she made me do it over and over and over again and said I wasn't doing it properly at the end my technique was off... now it makes sense what she was seeing was the collapse but she didn't know what she was looking at
I know the feeling - and sorry you're struggling so much at the moment! Like Chip_y2kuk says, not everyone knows how to interpret spirometry properly. And I think they often miss the context.
For example, the predicted level you're 'supposed' to get is literally just an average of a sample of people the same age, sex and height as you without lung problems. Within that sample, some will have been higher, and some lower! Same goes for peak flow. And that doesn't even take into account that some people might have done things when they were younger which really push up their best, or reduce it (my best peak flow and spirometry are much higher than predicted, probably because I played the oboe for years as a child. 80% predicted is not 80% of my best).
Also, they tend to just look at a couple of numbers, and then don't always interpret those fully (see above). They're supposed to adjust the cutoff for obstruction based on age/height/sex, but they often just say you have obstruction if your FEV1 (amount you can blow out in the first second) is less than 70% of your FVC (total amount you can blow out). Actually, for younger, taller people and men, that cutoff value of where you have obstruction is higher - so you might actually be obstructed when FEV1 is say 75% or 80% of FVC - it varies. For a short older woman, she might actually NOT be obstructed at 70% because her cutoff might be lower.
Some people (like me) can also have unusual spirometry at times which does show obstruction, but you have to know what you're looking for and be able to interpret it along with all the numbers, not just the 'main two'.
There are several scientific studies showing that spirometry and asthma symptoms don't match that well. I find that if my spirometry is low when I'm feeling ok, it's ignored. If it's 'ok' (bearing in mind that as above, 80% of my predicted is not actually that great for me), they'll say it means everything is fine. That definitely makes me feel insane, but I feel like 'relatively good' for you is probably hiding a lot. My lot never tell me anything and assume I'm incapable of understanding - I only find out if they give me the tracing to give to the doctor.
I never realised this. I keep thinking because it's a respiratory consultant then they'll do everything right but in one breath she tells me I'm not crazy, and another that she can't figure out what's causing the symptoms and not convinced they're all due to the asthma, and a third that i have eosinophilic asthma. It's all so confusing. I'm really hoping the severe asthma clinic can give more answers. When i think of how active and social i used to be compared to now I'm like a shell of my former self. It's awful. I'm off work even because I'm just not functioning.
Yep I definitely used to think they know more - but have realised that often outside a severe asthma clinic, respiratory consultants don't necessarily see many severe asthmatics, or anyone complex. Most of their patients might be people with COPD, or lung cancer, or other respiratory diseases they are more used to handling which don't behave like asthma and are easier to 'see' on scans. THey may still say they know asthma, but realistically - they often don't. It sounds like your consultant is out of her depth here, so I hope the severe asthma clinic can help - it sounds really awful for you currently.
If you do have high eosinophil levels though, that does tend to make it easier for severe asthma clinics who seem to find that type of asthma easier to deal with than non-eosinophilic asthma - and there are targeted treatments (often called biologics) for this type of asthma. (Actually, there's also a targeted treatment you don't need high eosinophils for now).
You may find it helpful to call the asthma nurses on the helpline if you're feeling confused about what's going on. THey can't replace your consultant or severe asthma clinic, but they can talk it all through with you, make you feel less crazy, and equip you with some knowledge about your asthma for when you go to the severe asthma clinic. It is a steep learning curve, I have been there and found them and this forum supportive back when I had no one else to ask. They're on 0300 2225800 or WhatsApp 07378 606 728 Monday-Friday 0915-5pm
Thank you so much i will ring them tomorrow!
It's like you read my mind on my consultant. Don't get me wrong she's lovely but she seems to understand lung cancer etc more (coincidentally she treated someone i know for lung cancer and caught it early). But the last two years I've felt that she doesn't necessarily seem to know what to do now that my asthma has become so complex. I'm currently on 4 meds daily (spiriva, relvar, flixotide and Montelukast) and has stopped the azithromycin as it didn't help with getting less infections. Despite this I've now been on steroids 7 courses since July and antibiotics several times too. She even said she's now worried I'm being over medicated as it's not having the desired effect. I'll be sat there with a sputum sample telling her my symptoms, struggling through tests and she goes your lungs are clear. Yes my eosinophils have been consistently high now averaging 0.7 and they've done them again now last week. I used to be on 0.1-0.2.
I feel so much better knowing all of this from everyone! Thank you so much.
Got to be honest that sounds like me... have you had a dynamic CT... constant chest infections is apparently one of the markers/tell tales/symptoms of EDAC/TBM (as well as tons of other stuff) ... and it commonly goes missed because its really rare (so it's normally found by accident when doing a bronchoscope for something else)
I've had a CT in 2017 showed changes in the middle between lungs, when I was pregnant early 2020 and i couldn't have CT so they did this other one they do in pregnancy and that showed a shadow on my right lobe. In 2021 the CT showed the shadow was resolved and whatever was in the middle. Haven't had one since then, just reg xrays. Is a dynamic CT different from a regular CT? If yes I've never had one of those. I've never heard of EDAC/TBM - will look this up.
Yes a regular ct is slices of an area... done as stills, normally a chest CT is done breathing in and starts at your shoulders and stops around your liver
A dynamic ct is of a smaller area in my case my trachea.... but the slices are done breathing in and out (in the same area) and stitched together to make a video
One small point. I was diagnosed with hypertension, as my readings were sometimes exceeding 200 over 100 and sat in the 160 s.
When they realised I had asthma and starting trying to get into under control, my blood pressures started to come down as well.
Similarly I had an irregular heartbeat.
My asthma, blood pressure and heart beat are strongly linked. Control the asthma and everything improves.
This is interesting as I've been tachycardic/borderline tachycardia for about 10 years (a little before all of this kicked off) and I've passed out and been told "postural hypotension, get up slower" started on asthma meds (even though they didn't control the asthma) and I stopped fainting/feeling faint .... so they said cortisol .... endocrine team said no thats not it
Now when my chest is playing up my heart rate is always 103+ bpm
Now the severe asthma team has just started me on azythromycin and says its supposed to reduce inflammation and obviously help with *some* of the bacteria causing infections (hopefully reducing the number of infections i get) .... my heart rate has been "normal" for the first time in 10 years
And over the years it's been surmised that the heart and asthma are somehow working together and compensating (makes sense as it always goes up when I'm struggling to breathe and down when I'm not, and now even further down)
It's nice to know I'm not the only one
Azithromycin can be really good. When i was on it a few years ago it did this and helped with my breathing as well as a bonus but i definitely had less infections. I was on it 2 years. But I've become resistent to it now and this time around it didn't help at all. But i still think it's a very good medication and i really hope it gives you relief.
I missed out on a trial of doxycycline... used in the same was as azythromycin..... so could that be an option you could explore with your consultant/the severe asthma team?......Unfortunately these things only tend to be available at "specialist level".
Yes I'm going to there with an open mind and just try whatever they recommend.
You're definitely not the only one! Asthma guidelines include heart rate as one marker of a more severe attack (usually 110 or more). I think this isn't well known though, because I find the tachycardia often gets blamed on nebs, even when there hasn't been one for hours. Or anxiety. Even had an ED dr say point blank that asthma doesn't increase heart rate, and get annoyed when I said it did.
Then they try to say they can't give a neb because it will increase it. I actually find that my heart rate will often come down after nebs and, if needed, other asthma treatments. The ED dr who told me asthma doesn't increase HR also told me I wasn't having an asthma attack because no wheeze/ok sats, and I'd apparently made myself short of breath by taking too much salbutamol. Then she gave me some IV magnesium sulphate which generally works nicely on my asthma, but according to her it was just to bring my heart rate down. It did, once my breathing also improved - which she no doubt thought proved her point.
I actually had a heart rate of 185BPM and kept getting chest pains.... issue was this was before any medication and before re-diagnosis .... so I hadn't usesd anything for 7-8 years for any respiratory condition
But I've been told that yes salbutamol use will increase heart rate... but being unable to breathe increases my heart rate too (didn't know it was one of the lesser known about markers though)
I've actually been in urgent care with a pulse of 105bpm and the nurse has done my pulse 3 times (with different tools) and then got her colleague to check before asking me "do you feel unwell?" .... the sarcastic part of me wanted to say "no I just thought I would nip to urgent care for a chat" ... but they told me that time that they couldn't find anything wrong with me and I needed to go back to my GP
This is so useful to know - thank you. My readings are 160/110 and in the end the gp has started me on BP tablets. It would be amazing if the asthma improved and it resulted in BP coming down.
Do you have sleep apnea? I've also been diagnosed with sleep apnea. I read that severe asthma and sleep apnea are linked.
I don't have sleep apnea but and I don't want to bang on about it too much that's one of the questions they asked me when deciding if I had EDAC (Excessive Dynamic Airway Collapse) ... basically weak airways become weaker (muscles relax) when your asleep resulting in airways collapsing easier .... resulting in your body jolting you awake (automated if you don't breathe we cease sort of thing) .... so it's another sign/symptom/marker
That's ok I'm sorry if I'm asking too intrusive questions and i really appreciate you explaining so much. It's helpful and makes me think the team there will be able to help. My appointment is July so fingers crossed.
No, not intrusive at all, we are all here to help and learn .... and doctors unfortunately quite often don't know as much as they would like us to believe .... so it's often good to go armed with some information.... my GP now openly admits they haven't got a clue and asks what I need/want
I hope it goes well for you in July
Thank you i will definitely update on the board after I've been there.
Out of curiosity i checked my latest letter and it says the HRCT from 2021 shows "minor atelectasis in the middle lobe".
Either way I'm looking forward to the appointment and feel much more informed now.
Atelectasis ... means incomplete inflation or partial collapse ... the problem with HRCT's is they are done breathing in .... and in my case anyway the air was "propping open" the airways so they looked perfectly normal and average......until they did a dynamic one (breathing in and out and stitching them together to make a short video clip)
But in 7 years I've been told:
Asthma
Not asthma
Probably asthma
Maybe asthma
Anxiety
Heart failure(cardiac asthma) /heart issue
Cholesterol
Psychosomatic was my favourite (basically they where insinuating I was making it up)
And I go to the doctors quite often and they say your chest is clear.... and after a while you think "am I going mad, was that rude doctor right is it "Psychosomatic" (in this doctors case, imagined their isn't anything wrong with you... was how it went... but he couldnt say that ) ..... now I prefer to go to my GP who normally says your chest sounds clear but we know how it goes with you... here's this (normally prednisolone and doxycycline) see how it goes and you know when to take them so I won't preach
And the severe asthma clinic after they diagnosed EDAC said they where going to put me on "Hypertonic saline nebules".... I thought salty water?..... then they explained its really really salty and used to mobilise mucus along with carbocistine (which I was already taking) to make it really really thin and less sticky (to make it easier to cough up past the collapsing bits) ....I also saw the respiratory physio .. who was amazing and gave me some breathing exercises to help clear mucus (drain) ... but after quite literally being sent from pillar to post and back round again for good measure I was very apprehensive and expected it to be a massive waste of time .... it wasn't and I'm glad I went and had all the tests done for the 3rd time round
But they where my 4th respiratory team, along with an endocrine team And an immunology team... and more tests and re-tests than I can remember all of
Hi Blueberry37
I and many other people on this forum have severe eosinophilic asthma diagnosed by a severe asthma team.
It took me many years to get to the severe asthma clinic - a story a bit similar to yours however I have been with them now for about 5yrs and during this time have had a great many tests and treatments.
As mentioned before the main treatment now for Eos asthma is biologics … and there are several to choose from depending on whether you meet the treatment criteria set by NICE.
These drugs are very expensive so you have to meet certain eos levels, hospital admissions and flare ups to qualify. Each one is different.
There are many many tests besides spirometry that they will look at …. FeNO being one which generally shows high levels of inflammation associated with eos asthma. I find this test really helpful ( though I know it’s not so helpful in other asthma phenotypes).
They will also look at things like gas exchange and reversibility and will re-test all the things that secondary care have already looked at! Don’t worry… just go with the flow and they will let you know the best treatment for your phenotype of asthma.
I am now on my second biologic, along with all the usual stuff and things are so much better!
If you can find the right biologic they are absolutely life changing for so many people… I am sure you will eventually get the right treatment and fingers crossed you will start to feel much better soon.
Good Luck 🤞🤞😊
Thank you so much this is so useful to know. I definetley feel more hopeful after hearing other people's experiences!
I'm in a similar position.
I've got a number of other conditions but they are querying my asthma diagnosis from 30 odd years ago.
I'm awaiting to be seen by the Brompton Hospital but i'm awaiting funding from NHS Scotland to NHS England and it's already been over a year and in that time my lungs have got worse. My last CT scan showed more atelectasis and I've had longer chest infections this year.
It's so frustrating as it's paperwork/red tape that means I'm not getting the help I need.
I'm not a wheezer but I'm more of a cougher and yes my sputum has got worse despite having saline nebulisers. We're also out of different medicines options that can be done from a secondary level clinic.
I'm on steroids constantly as my adrenals have packed up due to the amount of steroids over the years and I've had had to have several courses of increased steroids this year.
It is extremely frustrating but you are definitely not alone.
I'm just hoping once they get me to the right place we can work on my asthma or whatever it is and then stablise my other conditions. Hopefully they'll be able to do that for you too.
HiHave you had a high resolution CT scan of your chest? I presented with a productive cough, no infection showing in the sputum sample,l. After 8 months I was diagnosed with Bronchiectasis. Similar to yourself I pass all the lung function tests, but constantly have raise eosinophil, which they are now addressing.
Hope this helps, I know how tiring constant coughing and broken sleep and how it can affect you day to day.
Hi. I have not read every reply so forgive me if I am saying the same things. I totally understand the anxiety (and fear). It is so hard when you are exhausted from asthma. I have had severe asthma all my adult life really but was only diagnosed with eosinophilic in 2019. I went to the Oxford Airwaves Severe Asthma Clinic at the JR hospital for about a year and now see them every few months plus calls. I think there are 8 of these new clinics across the country specifically for severe eosinophilic asthma and using new biologic injections as treatment. There are several but I was put on benralizumab (Fasenra). There are a lot of tests and these are hard to do - blowing, measuring, big screens. I was also part of the ongoing trial but you don’t have to be and this means less uncomfortable tests. The injections are initially done at the hospital and after a few months at home every 8 weeks. The consultant I saw said he had worked in respiratory medicine for 30 years and usually gave people bad news but not any more. I was sceptical but for me it has changed everything. I am now not taking prednisalone, theophyline or use the nebuliser regularly. I sleep better and for me there have been no side effects. I don’t think I am unusual. I still have asthma but nothing like it was. It was not instant but after about 3 months the improvement was amazing. I have had a couple of chest infections and that was a shocker as my asrhma was really bad again but for a short time and after antibiotics and steroids (as nebules) in A&E I was ok again after 2 weeks ish So its not perfect but I now feel hopeful and happier. I do have a fast pulse then and now. Not sure that is related. Good luck with it and hope it works for you and improves for you. Take it easy. Just getting through each day right now will be enough.
I just wanted you to know you are not alone. I feel that same way too. I just developed asthma after many years and it has not really gotten better. I know one day you are going to feel better. Try to when you can, go out for a walk so your lungs can expand larger and heal. Don’t forget to eat plenty of fruits, vegetables and lean meat also to heal your lungs. I wish you well and God Bless!
Thank you for taking the time to reply. I wish you well as well.
We could be twins ,i have same symptoms as you, i have even qualified for a freedom bus pass as i struggle with excercise,movement and feel out of breathe, which i am grateful for .Chest xray is "normal"for me , waiting to be referred to guys to start injections to try settle it all down.
Keeping all my fingers and toes crossed for you.
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