Asthma or something completely different? 🤔🤔

[daphneblake11]

Hi. What is your opinion on this? Do you think I have Asthma or something else? 🙂

I'm 19 years old and have been significantly out of breath always, from the age of 6/7. It was not until I was about 15, that I was officially diagnosed with asthma by the gp after I had an asthma attack in the shower (the gp was not convinced I was asthmatic when I went to them at the age of 7).

In terms of family history, my Dad has asthma, yet he claims he has "grown out of it" with age. An aunt of mine also has asthma.

Despite being given medication, which I have been on for almost 5 years now, my asthma is very much not improved. I have visited the GP/asthma nurse a couple of times, yet they cannot believe that I am as out of breath as I say I am (my peak flow is usually good, for someone with asthma, according to them). I am on strong asthma medication, however.

I have been on montelukulast tablets and have had to rely on the use of my purple and blue inhaler for years now. But they do very little. When I stand up, I still get dizzy, I cannot walk up the stairs without feeling like I am going to collapse. Even getting dressed greatly exhausts me. If something falls on the ground and I have to pick it up, I literally near pass out. I wish I were exaggerating. I am of a healthy weight for my height.

Exercise is the absolute worst for me. I can only do standing exercises and after a literal star jump I have to take my blue reliever inhaler. I wish I were being dramatic, but when completing a 10 minute standing home workout (on the days I feel motivated enough to deal with the challenges of exercising ) I have to take my blue inhaler about 100+ times for that one 10 minute video and drink lots of cold water. I also have to keep a stack of tissues beside me so that I can discard of all of the phlegm that gets stuck in my throat (tmi, I know, sorry). I want to exercise and be toned but the thought of having to put up with my breathing depresses me and so I sometimes cannot bring myself to exercise. Brisk walking even makes me extremely out of breath and it has been like this since I was a young girl.

Any time I eat or drink anything I cough so much. I cough anyway all the time, from when I wake up in the morning, until I go to sleep at night. But the coughing gets so much worse when I eat or drink. It's a very chesty cough.

I have been in contact with my gp surgery, but with covid occurring, they are understandably extremely busy and so it is difficult for them to sort me out properly.

I was put in touch with a pharmacist at my GP surgery. He was surprised by my symptoms and said they did not exactly meet classic asthma criteria. He gave me loads of different acid reflux medication to try to see if it would help my coughing at all, but to no avail. He was also surprised to hear that I am yet to have a chest X-ray (I was never offered one) to get a closer look at my chest.

I often hear of people with severe asthma on forums, who have their asthma well controlled and are able to go on daily runs. They only need to use their blue inhaler every now and then whilst running. I feel I am using my blue inhaler an extremely exessive amount of times and I am not exercising nearly as much as people who go for daily jogs, who have seriously bad asthma.

I went to the gym before covid but it was so difficult for me, with my breathing. It was only because of the air conditioner that I could exercise. When I exercise at home I need a fan beside me on full blast and windows need to be open, to aid my breathing. If it is too warm, I get overheated and this makes my breathing even more challenging. This has always confused me greatly, because, while I find it easier to breathe with cold air, online I have seen that asthmatic individuals usually need heat to feel comfortable enough to exercise.

A great aunt of mine has bronchitis and she has had it for a couple of years wonder if I too could have bronchitis or CPD or something similar to asthma that is just not being picked up on? My quality of life is greatly affected. I am exhausted from being out of breath all the time. I have an oxygen device for my finger that I use. My oxygen is slightly lower than other family members of mine, but not by much. This confuses me, because I am so greatly out of breath all the time and I would have expected it to be lower.

Why does my medication help so little and why do my symptoms vary so greatly from "classic textbook asthma." Could it be something else?

All advice is greatly appreciated. Thank you for taking the time to read my very long question/life story lol 😆

[twinkly29]

It sounds like a call to the Asthma UK helpline might be useful.

Also this 'new to asthma' post had other links in it to do with peak flow and other conditions that mimic asthma so might be worth a read - not because you are new to it but it covers a lot of issues you've touched on.

healthunlocked.com/asthmauk...

Things in asthma (from symptoms to peak flow to treatments that work etc) are variable within a person and very individual from one person to another - so your peak flow for example is only relevant linked to your personal best (not what someone says is good because of your age or whatever).

Speaking of peak flow, it would be sensible to build a picture of impact of meds so it would be useful for you to do your peak flow when symptomatic before you use your blue inhaler and then again 15 minutes after using it as this can help to show if the inhaler is helping symptoms or not.

With regards to oxygen levels, again what other people's levels are is basically irrelevant but also oxygen can be normal even in people having acute severe asthma attacks (eg when being taken to hospital) so aren't recommended as a measure to decide if there's an issue or not as they're not necessarily indicative of what's going on.

From what you describe it's difficult to say although asthma symptoms aren't usually present all the time. Even in severe asthma (ie the condition diagnosed by specialist team, as opposed to a severe acute attack) symptoms would be variable across a day and/or from day to day. Also feeling dizzy a lot of the time isn't usually related to asthma itself but to breathing patterns/breathing too quickly (this of course is very common alongside or because of things like asthma but would be treated in a very different way). Shortness of breath is something that many people always assume is low oxygen or caused by asthma but actually there are many other things that cause that, and other asthma symptoms.

But as I say, it's difficult to know and harder for you if you're not getting helpful support from your GP or asthma nurse.

So have a read of the link above (as it covers various things that might be useful) and then maybe try and speak to Asthma UK as you can go through your history with the nurses.

AUK helpline - 0300 2225800 Mon-Fri, 9am-5pm

[daphneblake11 in reply to twinkly29]

Thank you so much for the advice twinkly. I never knew that just because your peak flow and oxygen levels are shown to be okay that it doesn't mean my asthma is fine/controlled. I will be sure to monitor my peak flow before and after taking my blue inhaler like you have suggested! I will also take a look at the link you have listed. You have been a great help.😀

[robert1957]

Please research magnesium deficiency and symptoms of magnesium deficiency also research vitamins d3 andk2mk7 look at your diet reduce your animal fats and dairy products it may help good luck

[Lysistrata Administrator Community Ambassador in reply to robert1957]

It's a myth that dairy increases or thickens mucus, though some people may find the sensation of dairy unpleasant in the mouth if they have mucus. Diet in general isn't proven to have any real effect on asthma besides avoiding known triggers (so of course if dairy products or other foods are actually a trigger, then avoiding them will help!)

[robert1957 in reply to Lysistrata]

Who told you it was a myth , some people can take as much dairy as they want and it has no effect on them others can’t

[Lysistrata Administrator Community Ambassador in reply to robert1957]

Scientific investigation of the myth and its origins, for example: adc.bmj.com/content/104/1/91

I already mentioned that some people are triggered by dairy and if that's the case they are best to avoid it (as with other foods that are a trigger). But there's no evidence to suggest that generically cutting out food groups 'just to see' is helpful with asthma. It's a complex area and what works well for one person may not be good for someone else.

Of course Daphne may not have asthma, but unless she thinks there's a good reason to suspect a link between her symptoms and what she's eating, reducing or removing dairy is still unlikely to help. In any case, she needs to see a doctor again for investigations and work out what's going on, instead of trying diets and supplements by herself.

[robert1957 in reply to Lysistrata]

This research talks about milk .milk is only one part of dairy .daphne is looking for advice from any thing that could help ps not so long ago doctors told you smoking did not cause cancer look were we are now

[Lysistrata Administrator Community Ambassador in reply to robert1957]

That's one example, since you asked me 'who told you it was a myth'. I've yet to see any evidence that milk or any other dairy product does have a negative effect in anyone without an actual allergy/intolerance to it, or that cutting out entire food groups without any solid basis to suspect they are causing respiratory/allergy symptoms is likely to help.

Daphne is looking for advice before she goes back to the doctor, and I and others have advised her that she needs to pursue medical advice and push them to look into what's causing this (which she's also said she wants to know).

Taking supplements or experimenting with diets at home with no medical input isn't a good plan for anyone when they don't actually know what is causing the symptoms (or even if they do, if they've been advised on a specific treatment by a reputable professional).

Additionally, if cutting out certain foods does seem to be needed at any point, it would be better to work with a dietitian on this to ensure a balanced diet.

[daphneblake11 in reply to Lysistrata]

Thanks for the advice Lysistrata. I never knew just how much asthma varies from person-to-person in terms of foods and allergies etc. I definitely agree that it is worth further investigating with the doctor to see if I do have foods that need to be cut out of my diet, to stop my breathing from being affected. You have been really helpful. 😀

[hypercat54 in reply to robert1957]

Why do some people smoke and live to a ripe old age whereas others will get lung disease? We are all different and things affect us all differently depending on our genetics and lifestyle.

[robert1957 in reply to hypercat54]

Not all people who smoke get cancer this is true the reason I believe others get cancer is due to what types of virus they have and lifestyle some people have never smoked and can get cancer . so we know there are other things in play I believe viruses are the key

[hypercat54 in reply to robert1957]

Yes I agree. But I wasn't talking about lung cancer necessarily, though it is true that around 19 out of 20 who get it are or have been smokers.

Copd is much more common and around one quarter of all smokers will get this. The figures are around half of all smokers will get some kind of lung disease. We all know people who have been lifelong smokers and died at 96 fit and healthy.

[robert1957 in reply to hypercat54]

I wonder what age they would have lived to if they hadn’t smoked?

[hypercat54 in reply to robert1957]

Yes good point

[hypercat54 in reply to Lysistrata]

I have asthma and copd and I have always been told by medics that whilst dairy foods don't increase mucus of thicken it, it can make it stickier and consequently harder to cough up. Drinking more water helps reduce the stickiness and makes it easier to bring it up.

I have a sister who never smoked and has no lung disease at all but she always had quite a bad dry cough for years. Doctors ignored her so she did her own research and googled it. She then cut out all dairy and reintroduced them one my one. She found she was intolerant to cows milk and ice cream. Since amending her diet she stopped coughing completely. She also changed her feather and down duvet to a microfibre one which helped too.

A very common trigger is dust mites which can make you cough. It is important to ensure all bedding and night clothes are washed in at least 60 degrees to kill them. Pillows are great dust mite collectors so it's important to wash or replace them every 6 months or so.

These are quite simple things you can do to see if they help. Oh and I have never heard of anyone having copd at your age! This is usually caused by smoking or working in certain trades for decades and most sufferers are over 50. You do get a few younger than that and we have a couple in the British Lung site in their 30's. I think they both have the rare genetic link though.

I am not saying nothing is wrong but whatever it is it's not copd.

[daphneblake11 in reply to hypercat54]

Hi hypercat54, thanks for taking the time to reply to my post! Your advice has been extremely helpful. I have noticed that when I eat ice cream, I do tend to cough more than I usually would. I also never really thought about the possibility that my duvet could me making my cough more uncomfortable.

Also, thank you for reassuring me about the COPD thing. At least I can remove that from being a possibility. 😃

[hypercat54 in reply to daphneblake11]

Oh it's good to know I have helped you a bit. It makes answering others much more worthwhile. Thank you for that.

Don't feel bad it never occurred to you as it didn't to my sister for years either. She did a lot of googling to find some possible causes so I am just passing this on. I hope it helps at least a bit. Good luck.

[daphneblake11 in reply to robert1957]

Thanks for the advice Robert. I have heard a couple of times that dairy can make your asthma worse. I eat a mostly vegan diet, otherwise I too would question whether it would be negatively affecting my asthma . 😀

[Griffon]

Hi Daphne , as far as I'm aware asthma has a clear set of symptoms . Asthma is inflimmation of the airways caused by an allergic response . The inflammation restricts the airways causing difficulty breathing . The inflimation also causes the production of mucus which has to be coughed up to clear it . Your symptoms do not seem to entirely fit in with this , particularly the dizzyness is concerning ?

[Lysistrata Administrator Community Ambassador in reply to Griffon]

There are key symptoms of asthma yes, but also quite a bit of variety in how those are experienced and triggered, as well as in the underlying biological process causing symptoms. Not all asthma is allergic, not all triggers are allergic or produce an allergic response, and not all asthma inflammation is the same.

Also though yes the airways do produce mucus when inflamed, it doesn't seem to be typical for most asthmatics to regularly cough up large quantities of it like Daphne is describing. It also doesn't sound like any asthma medications are helping.

Daphne - I agree with Twinkly, including about speaking to the AUK nurses. I do think that your GP needs to be seeing you again and looking into what's going on properly (referring if they're not sure or think you need specialist tests). They shouldn't be fobbing you off with 'busy with COVID', if that's what they're saying. Cases are much lower now and there are still non-COVID issues like yours that need looking into.

Hope this helps!

[daphneblake11 in reply to Lysistrata]

Lysistrata, you have further convinced me that I really need to speak to AUK nurses. Also, you're right. I do need to push everything forward with my GP. My asthma or whatever this is, is truly affecting my quality of life. I put it off long enough because of covid. Thank you so much for all the advice.😀

[daphneblake11 in reply to Griffon]

Thanks for the advice Griffon. Some of the symptoms really do sound like they are asthma related, whereas others...not so much! I guess that is all just part of the big puzzle that I am trying to solve 😀

[PeakyBlinder50 in reply to Griffon]

Mine is non allergic caused by Eosinophil levels absolutely no triggers whatsoever.

[Wheezycat]

I just want to say yes, and amen, to especially Lysistrata’s response to Griffon. Lysistrata knows so much more than I do, and yes, she is completely right to say not all asthma is due to an allergic response. I am only repeating that to as it were ‘reinforce’ that statement. It is a common misconception. And one that irritates me.

[EmmaF91 Community Ambassador in reply to Wheezycat]

*not all asthma 😉😅

[Wheezycat in reply to EmmaF91]

Ooops! I will correct. Thank you!😆

[PeakyBlinder50 in reply to Wheezycat]

I agree mine is non allergic with no triggers.

[EmmaF91 Community Ambassador]

Hi Daphne

Sorry to hear that you’re struggling so much. I won’t repeat what already been covered by the others, but also want to ask if there’s been any investigation into non-resp related SoB causes (anaemia, heart issue etc etc) as sometimes thy can be missed if the main symptom is SoB and fatigue.

Just an idea to add to the others!

Please do talk to AUK. They are lovely and really helpful!

[daphneblake11 in reply to EmmaF91]

Hi Emma! I probably should have mentioned that I have taken iron supplements from my doctor for three months, because of low iron. This probably did not help my breathing much lol. I am getting my bloods redone next week and hopefully the iron is back up to where it needs to be. I myself have wondered if it is a heart issue or anything like that. It's definitely worth further investigating. Thank you so much for the helpful advice 😀

[Nmstoday in reply to daphneblake11]

Hi if this hasn't been checked already it is worth asking for your B12 levels to be checked as you can become deficient if you are vegan and it causes all sorts of weird symptoms including breathlessness. Before I had my deficiency picked up I used to walk down the road feeling like I was falling backwards all the time and generally felt rubbish.

[daphneblake11 in reply to Nmstoday]

Thanks Nmstoday. Whoops I accidentally called you Emma. So sorry!! 😊😊

I got my B12 checked 3 months back. It was apparently fine. I actually was surprised it was okay because I thought I fit the criteria of having it. My mum had it for many years and it started around my age and I thought that's what it might have been. How confusing lol

[Offcut]

There are many things that will give the impression of asthma . Reflux is an often overlooked thing that is and does affect you. I take Carbocisteine for the gunk and it has helped no end. I was a little concerned over the amount of Ventolin you take it can cause a few issues and twitching at night! I have many Comorbidities manly heart and lung so specialist can have a habit of blaming the other problem/condition? For many years I was told my Peak flow was not that bad but after a spirometry test I was found to have Restrictive Lung Disease. After a few more tests at hospital I was confirmed RLD and COPD and also I lost a further 12% lung function lying flat! I do feel that you need further investigation but under the present Covid situation it will not be easy. Try "Huffing Technique" youtube.com/watch?v=XvorhwG...(Not working as expected?)

Be Well

[daphneblake11 in reply to Offcut]

Thanks so much Offcut. I agree that I am taking far too much Ventolin than what is healthy! It's interesting to hear that you were in fact, told that your peak flow was nothing to be overly concerned about and then it turned out to be RLD and COPD. I do really wonder if I could have something like what you have. It's definitely worth further investigating. Thank you for the video, I will be sure to check out. You've been really helpful! 😀

[Offcut in reply to daphneblake11]

With you being as young as you are, it would be surprising to have both unless you smoke exotic tobacco or work in a hazardous workplace? I worked with asbestos MDF and plywood and cut all sorts on a circular saw for many years with out mask stupidly!

[daphneblake11 in reply to Offcut]

Oh I see your point lol. I don't smoke and don't work in a hazardous workplace! That cancels out RLD/COPD then, I guess. Thank you!🤣

[peege]

Dear daphneblake11, I cant help feeing annoyed and aggrieved on your behalf that you've been so fobbed off by your gp. I know were all different however, I have moderate asthma only diagnosed in my 40s though I know I've had it all my life. It was simply dismissed as a child.

Now my asthma is so well controlled with Fostair that I rarely need ventolin. I've lost count of the number of x-rays I've had in the past which were labelled 'clear' when in fact a CT scan showed damage, small airways disease & bronchiectasis.

Alarm bells ring when you say you are using so much ventolin, it can't be right.

There are several lung diseases so I'd suggest you don't let this go, learn as much as you can, as others say keep records of your peak flow before & after preventer (best of three so time consuming). My concern is that you have something else lung -wise or other and it really needs investigating . Do give the asthma UK helpline a call. Also you could cut and paste your post to the British Lung Foundation (BLF) as well. Many members have experience of asthma plus other lung diseases. They also have information on most lung diseases and a brilliant helpline.

My very best wishes to you in getting the proper diagnosis you deserve. From my own experience I'd be insisting on a CT scan (if I had my time over I'd have got one privately. It would have saved my lungs some damage). Peege

PS bronchitis is a lung infection whereas Chronic Bronchitis is classed under the umbrella of COPD along with Emphysema - usually (but not always smoking related). There is a genetic deficiency called Alpha 1 Deficiency which can predispose a person to COPD (I'm not suggesting for one moment that you have copd, im no medic 😬)! Good luck

[daphneblake11 in reply to peege]

Peege thank you so, so much. It's interesting to hear that your asthma was also dismissed as a child. I can't believe that it was only in your 40s when you were officially diagnosed. You must have been in soooo much pain every single day!! I also find it interesting that your x-rays showed everything to be fine, when in fact, it was a CT scan, that highlighted that there was serious damage in your lungs!! I will keep this in mind moving forward. It just shows you that all is not what it seems.

With the whole ventolin thing...yeah that can't be healthy lol. You aren't the first person to point out that that is not okay. I will definitely be more aware of my ventolin usage moving forward.

I will get in contact with Asthma UK tomorrow and I would like to give the British Lung Foundation a call too. I have taken your advice and copied my post into the BLF forum also.

I will definitely consider going for a private CT scan in time, if all else fails, so thank you for bringing this to my attention. I am so sorry to hear that you had so much of your time wasted for years, when you must have been in so much pain with your lungs.

Thank you for clarifying about the chronic bronchitis thing. That makes a lot more sense. I believe that is what the relative of mine has. I do wonder if that could be why I could potentially have something like that. When researching, I recently came across the Alpha 1 Deficiency thing, so I find it entirely fascinating that you have made a link back to that too!

Your response has helped me so much Peege. It was so kind of you to take the time to write such a detailed response! 😄

[peege in reply to daphneblake11]

Bless you. Whatever you do get diagnosed with (eventually) knowledge is the key going forward . We can't self diagnose, just be our best & bravest advocate in getting NHS support. P

[daphneblake11 in reply to peege]

I 100% agree with you peege 😊

[PeakyBlinder50]

You have not said what inhalers you are using and how much. I have moderate asthma I use x2 steriod inhalers in total 6 puffs a day of steroid inhalers and montelukast. You need to be properly assessed and GP's are still seeing people so you should be seen this is serious and should be properly managed with a management plan. Request to see an asthma nurse and tell them your symptoms they should check your peak flow it sounds to me you a) don't know what type of asthma you are dealing with e.g. allergic, exercise induced, non allergic this has to be figured out. Blood tests will look at your white blood count, eosinophils, neutrophils. Then you need to trying out steroid inhalers to get the asthma under control. I use Fostair 200/6 and Qvar. Fostair is the combination inhaler (contains what you call the blue element in it). I never need to reach for an inhaler because my asthma is managed properly with regular steroids it's really important that you look after your lung health and get your asthma under control. My oxygen level was normal in the hospital when I was having an asthma attack 2 years ago so I wouldn't judge how you are feeling by this.

[daphneblake11 in reply to PeakyBlinder50]

Hi PeakyBlinder50. I take ventolin and seratide. I take my seratide two times in the morning and two times at night. I then take my montelukulast tablet, like yourself, at night time. I take my ventolin when I feel out of breath e.g. After getting dressed or fixing my bed. I use it for an excessive amount when exercising.

I agree with you when you say I definitely need to be seen by my GP. My local GP clinic currently has no asthma nurses (they retired around the time covid started) which only makes things slightly more complicated. The GP should still be able to deal with this though, I think...

Now that you mention it, I actually don't know what kind of asthma I have. I guess you could say I was just never told.

I agree that blood tests need to be taken to check the different things you have mentioned and my steroids definitely need to be reviewed to find a match that works best for me.

I can't believe that your oxygen was normal when you were in the hospital. You actually aren't the first person to have commented about this, on the forum. It is definitely important for me to be aware of this moving forward!!

Thank you so much for taking the time out of your day to give me some really helpful advice. I really appreciate it. 😀😁