To quickly outline my story, I have had undiagnosed breathing trouble/chest pain/cough since October 2012, so for the past 15 months. I was originally diagnosed with asthma when I was 14 (I'm 20 now, 19 when I started this health trouble) but my asthma was always well controlled with a steroid inhaler (symbicort at the time). I started seeing a respiratory consultant back in January 2013 and he started looking into other possible causes, so I have had scans and testing galore, but so far nothing conclusive has come from it and I keep getting worse.
In September I was referred to a cough clinic and the consultant there ordered a histamine challenge to try and get to the bottom of the 'asthma or not asthma?' question. I had a positive result, but I came out in the 'mild asthmatic' category, at which point the cough clinic consultant decided to completely take me off my inhalers to see what happened (I was on pulmicort and oxis at the time). My respiratory consultant agreed with the removal of oxis, because I had also done an exercise test which showed my breathing was normal but my heart rate was incredibly high.
A month after being off my steroid inhaler, I began to experience severe nausea/vomiting and I'm hardly able to keep any food down at all, and as a result I have lost a lot of weight. I also experience severe dizziness when I stand, get frequent headaches, and I am exhausted and very very weak (can't even pick up my cat any more!) Along with all this, I am still getting my symptoms of breathlessness, chest pain, coughing, wheezing, etc.
I went back to my main respiratory consultant a couple of weeks ago and he suggested 'hypoadrenalism', which up until this point I had never heard of. I looked into it a bit, and from my understanding, it could be sort of like withdrawal symptoms from the steroid inhalers. I have had a blood test to confirm if I do have hypoadrenalism and the results for that come back on Tuesday. I have also been put back on a very low dose of steroid inhaler (pulmicort 200), and my vomiting has calmed down and my appetite is slowly starting to return, although I am far from well.
So, the theory is at the moment that I have mild asthma, controlled by steroid inhalers, and as a result of coming off the steroid inhalers in September 2013 I got hypoadrenalism, which explains my nausea/vomiting/dizziness. However, the original problem I have had for 15 months now (the breathlessness/chest pain/coughing) is still unexplained, as my asthma medicine does not treat it. So I am still having tests done to try and diagnose that (I have another exercise test in a couple of months and my consultant is still keen to investigate).
Apologies for the long post. I am really wondering, does anyone else have any experience of hypoadrenalism? I think it is also known as secondary adrenal insufficiency. Also, after 15 months of constant breathlessness, my chest is extremely achy all the time and my body is very weak and deconditioned. Does anyone have any suggestions for how to stop yourself going crazy when you can't move from a sofa?!?!
musicgeek I really feel for you, sorry to hear it's still not resolved and you are feeling rubbish however at least they're not giving up on you! I used to hate the way mine just shrugged it off when they couldn't solve things, so it's good that they are trying and hopefully will get there in the end.
Will be interesting to see what the blood test says - maybe worth referral to an endocrinologist if something there? I'm no medic but had understood that secondary hypoadrenalism tends to happen only after prolonged use of oral steroids with most people, so if that is an issue for you it may be that you have an underlying problem that was there already and it didn't take much to set it off with the steroids? I also get the impression that endocrinology is really quite complex so if you have issues there you probably want a specialist dealing with that side of things rather than your resp consultant.
Otherwise...vaguely wondering if a resp physio might be able to help with trying to become less deconditioned when in this state? Not sure but worth asking consGP< say you don't want to get into a cycle where feeling awful makes you more unfit and then everything is harder etc?
Sorry I can't help much...really hoping you can find some answers soon!
Thank you so much, Philomela. I was with a breathing physio for a while last year and she helped me get my cough under a bit more control, but she more or less said exercise is a no-no for now as my body is so intolerant to it at the moment. I am trying to find ways to entertain myself!
Sadly, nothing in life is ever simple as I had my blood results back today and everything was completely normal (!!!) So no hypoadrenalism for me. That's good in the sense that it sounds rather nasty and I don't have to worry about that side of things, but at the same time I now have nausea/vomiting/weight loss to add to my list of unexplainable symptoms!
Whilst with the GP she also checked my chest and oxygen sats/pulse, as the past few days I have been really struggling with my breathing and I was very out of breath and unable to finish sentences when I was with her. Typically, there is absolutely no sign of a wheeze in my chest and my oxygen sats are 100% (for me they are always high), however my pulse was 120, so higher than we would like. My heart has always been a worry and I've had an echo done which showed the structure is fine, however my consultant wants to do an exercise test again to see exactly why it is racing so much all the time. I'm not on any inhalers that would increase heart rate either, not even my reliever as my consultant doesn't want me to take it whilst my heart symptoms are unexplained.
I am so frustrated! None of my symptoms are making sense at all or fitting with a diagnosis. It seems I do have mild asthma but that is not what is causing my current breathlessness. I am about ready to tear my hair out!
Just wondering whether you have been measuring peak flows? What has struck me from your posts is that I have similar symptoms, also with no wheeze and normal sats but high heart rate because I can't breathe and my chest is tight. If I couldn't use my reliever I would appear how you describe. Last time I had an infection I had a chesty cough and was so out of breath I couldn't talk properly and she gave me pred despite no wheeze. I don't quite understand why your gp is saying asthma isn't causing your breathing problems. How does she know?
Hello, thank you so much for replying. I've been taking peak flows twice a day since I started my steroid inhaler again ten days ago, and they are a bit down for me - my best ever is 520 and I've never got above 460 this time, and I've been down to 380 a couple of times (I hardly ever go below 400). I think my GP is confused because my asthma should only be mild, so because I wasn't wheezing and my oxygen levels were fine she didn't suspect asthma problems. I don't know if she was right or not.
All my doctors are reluctant to treat me with anything until they know for sure what is going on, in case they mask symptoms or put me on medication unnecessarily. That's all well and good, but it isn't much fun when I'm struggling to breathe! Do you find going on the pred helps you, even if you're not wheezing and your oxygen levels are ok? I am so breathless at the moment that I struggle to talk at all, and my chest pain is absolute murder.
Hmm musicgeek I know I\ve said this before and I've read your other posts, but just because you sound so much like me I am not convinced at all that you don't have asthma as a big contribution to this! I have also been told in the past that I have mild asthma and 'something else' -don't know what cons is thinking, will find out tomorrow uggghhhh but my new GP who is amazing does not go on PFs, wheeze etc and thinks it is asthma that is currently severe (though I know not as severe as many thankfully -I don't have terrible attacks) and needs sorting. Obviously you don't respond so well to the meds which is confusing but I also had a confusing period with all that. Can't remember if you've done reversibiliity testing?
I am currently on 25mg pred - I resisted going up because of side effects but it's quite amazing how much less exhausted I feel and how much more I can do than on 20 where I was really finding it hard! At 15....just ugh. And no I don't wheeze and my sats are ok. I have had similar appts and tbh I wouldn't expect them to hear much as I so rarely wheeze -if I am really struggling I may get decreased air entry but not necessarily at a 'non-urgent but not good' level.
Also - your HR: I am ALWAYS having comments about how fast my HR is! And I know, but I just sort of ignore it now as they just comment and I'm used to it. I saw a cardiologist a couple of years ago as resp cons was concerned (it was 145 after a bit of slow walking) but they said the asthma would do that and no heart issues, had all the tests. I am of course on a lot of medication which does that and I know it goes up when I'm having an attack which is partly all the Ventolin etc but actually it is one of the signs of an attack as well and I've noticed it's a little calmer on the higher dose pred (again admittedly, less Ventolin needed but it also seems a little calmer with Symbicort?) I have been told Atrovent which I am on is bad for the heart but tbh mine was pretty nornal last year when I had a good period in spring then in Aug and was just on a bit of Atrovent as a reliever. I definitely didn't get the palpitations I get at night after taking Symbicort when it's bad - again, ok other factors like more reliever but I always take Symbi and I do seem to notice I get more heart effects from that and various other things when I'm struggling. I know it's not serious (for me anyway) and it doesn't worry me but as you'll know it can be very annoying trying to sleep with a heart that feels like it's trying to climb out of your chest!
Yes, pred always helps me when I am feeling like that. Obviously not saying you will be the same, but just letting you know that breathlessness and chest tightness without wheeze can be asthma. If your breathing has got worse and peak flows lower since stopping the steroid inhaler that points to the cause being asthma to me. I don't see how asthma medication could mask symptoms, if it works they are caused by asthma so you need it.
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musicgeek I really feel for you, sorry to hear it's still not resolved and you are feeling rubbish however at least they're not giving up on you! I used to hate the way mine just shrugged it off when they couldn't solve things, so it's good that they are trying and hopefully will get there in the end. 
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