In need of your expertise!

[MrsCMK]

Hey all.

I’m in need of a bit of advice and I think my question is well placed here given all of your experiences.

I’m terribly allergic to lots of things and have been under immunology for many years and they do a great job of managing my allergies. This year, I developed a serious case of breathlessness and was relying on Ventolin a lot. It would come on quite suddenly and leave me quite tired afterwards. The GP started me on Clenil (I’ve used this in the past) and referred me to my very lovely asthma nurse.

Fast forward 2 months and I’m cured! I stupidly stopped the Clenil (I really should know better!) and within a month the breathlessness came back with a vengeance (when we had that ridiculous hot weather). The breathlessness attacks would leave me absolutely exhausted (heavy limbs, slurred speech, the lot!) and wiped out for sometimes days on end- it was pretty horrendous. At this time my peak flow would drop to around 320 (PB = 490). Clenil was then switched to SERETIDE.

I was referred for a private diagnosis whilst awaiting my NHS referral and the doctor unfortunately would not listen to the full story and my history of allergies and told me to stop my medications and decided it was anxiety. His deciding factor was my lack of wheeze (I haven’t wheezed since starting montelukast a year ago, prior to that I wheezed every night). I’m literally the happiest person in the world, there’s not an ounce of stress in my life and I don’t feel anxious or depressed in any way- to which my GP also agrees that’s it’s not anxiety or stress related. Three days after stopping the meds, I deteriorated and was back on them along with a course of pred.

I’ve just had my NHS spriometry test and it came back in the normal range and am still awaiting an appointment with the respiratory consultant.

I know that my situation is not uncommon and I’ve read a lot of people here commenting on similar battles. I guess I’m just looking for some advice with regards to what I should do next. I just want a firm diagnosis and for me to never have an experience like this summer again.

Thank you in advance

[HungryHufflepuff]

Oh my goodness. Do doctors not know by now that not all asthmatics wheeze?! And how irresponsible to tell you to stop your medications. And what is it with doctors dismissing symptoms as anxiety? My dad was told he was anxious when he presented with symptoms, in fact he’d had a heart attack and had a quadruple heart bypass. I went to my doctor, explained my symptoms, I was told it’s anxiety. Weeks and weeks later, I collapsed, it turned out to be an infection which by that time had spread and required surgery (under general anaesthetic) I really don’t know what it is with the doctors and anxiety thing. Do they think we’re imagining everything. Anxiety does make things worse, I know when I’m anxious I can get nauseous or seriously short of breath. But even if it is ‘only’ anxiety the symptoms are still real. Sorry I forgot what your original question was ☺️

[MrsCMK in reply to HungryHufflepuff]

Thank you for understanding. I don’t think I really had a question 🙈

Your experience sounds awful, I’m happy to hear that you’re passed it and recovered (I hope?)

My frustration now is that every doctor I see, looks back at my notes and that letter with my private diagnosis is there and I have to re-tell my story and reassure another person that it’s not anxiety, which is reeeallyyyyt frustrating. Luckily I’m a calm person which helps but it’s tiring. Another thing that I’m battling with is that several doctors have asked me whether I’m trying to conceive (because of my age) and try to talk me into thinking that I’m anxious because I’m 32 and do not have children yet. It really does make me chuckle! I don’t have children because I’ve not been ready to have one yet.

Anyway, enough of me moaning 🙈😂

[HungryHufflepuff in reply to MrsCMK]

You’re not moaning. Sometimes it just helps to share these things. And yes, I am pretty much recovered from that thanks 👍

[strongmouse in reply to MrsCMK]

I decided a few years ago that some doctors prefer reading notes to actually talking, and listening to patients.

Recently I had to go to hospital for urgent surgery (not related to asthma) and one of the doctors was going through the list of my illnesses and said "You have depression" as a statement. I actually laughed out loud in spite of the pain I was in. The last time I had depression was post-natal despression over 30 years ago! The problem is that if you don't have an illness which is written in your notes and they think you have they can easily miss a serious diagnosis. I include mental health illness here as I know that too can be serious. After a few days and a CT scan they realised that they needed to operate, which they did successfully.

At the time I was too ill to think about getting it changed but I understand that there is a mechanism for getting incorrect information changed on your notes.

[MrsCMK in reply to strongmouse]

That’s really interesting that you stated that because now that you say it, I can think back to many times that dr’s have jumped to conclusions based on “notes.”

Once I have a firm diagnosis, I will certainly be looking to get that misdiagnosis off my file because I can foresee that every time I have an issue with my breathing, I’ll have a battle on my hands convincing the doctor that I’m seeing that it’s not hyperventilation.

Thanks for sharing your story and for the advice

[Hidden]

It’s not only with asthma that this “anxiety” label is being used. I had digestive issues labelled as the result of “stress” or “anxiety” for the best part of four years, not helped by the fact that the worst of the symptoms came and went. My consultant gastroenterologist finally admitted that label was wrong when I went through an extremely stressful period and suffered no symptoms.

I sometimes think that doctors have two fallbacks if they can’t explain something: if the patient has a temperature it’s probably a virus; if the patient doesn’t have a temperature it’s probably stress or anxiety. Any doctors reading this please take note: there is nothing more likely to cause a patient stress than telling them symptoms are down to stress when they know full well they’re not.

At least your GP is on your side. At this stage the only thing you can do is to wait for the NHS appointment and see what happens.

[MrsCMK in reply to Hidden]

I think you’ve hit the nail on the head there. It seems to be a common diagnosis for a lot of illnesses that don’t necessarily fit into the box. I understand that it’s difficult when they’re restricted to such short appointment slots but it just makes things worse in the long run.

Uhhh, I guess I’m going to have to apply a lot of patience with this one and ride it out 🙈

[Lysistrata Administrator Community Ambassador]

Ugh the anxiety thing drives me nuts! I once got told when I went to OOH feeling very dizzy that it was anxiety about 2 mins after telling the dr what was happening. I get that panic attacks etc can make you dizzy, but I was not anxious at all and he was trying to tell me that I was anxious about a medical test I had a week before that I was told at the time was normal and a week later it had made me anxious and dizzy?! I went to my own GP a couple of days later and she said my blood pressure was low but not as low as it had been at OOH - he hadn't even bothered to tell me that, which probably explained a lot of the weird feeling.

MrsCMK I do feel for you as I have been in a similar situation with asthma and it is tricky. I'm glad your GP is being supportive at least as that helps. Have you had reversibility testing as part of the spirometry? If not I would ask and also insist they do the reversibility even if the first part looks normal (also double check any advice from the hospital about stopping meds).

Not sure what else to offer other than hang in there and don't let them make you start to doubt yourself. I was very bad with that but you have a lot of good evidence IMO that there is asthma behind that so make a point of mentioning it when you see the consultant.

Hope this is vaguely helpful and good luck!

[MrsCMK]

Thank you It sounds like you’ve had an equally frustrating experience too

Yes

What’s reversibility testing? I’ll certainly ask about that when I find out a bit more 👍

[Lysistrata Administrator Community Ambassador in reply to MrsCMK]

Yes it's been very frustrating at times! I am around the same age as you and astonished/annoyed as a woman that they're making assumptions about you being anxious to conceive - what century are we in that they decide something wrong with a woman must be anxiety due to that, when it's not something you've raised and they don't even know if you want children?!

Sorry if I wasn't clear on the reversibility- never sure what people know! You withhold meds on the day (check which ones but generally any type of reliever), do the test, take reliever (should really be 4 puffs according to literature - I checked - but sometimes they give 2), wait 15 mins or more and do it again. Improvement of 12% or more ( some guidance says 15% or more) or 200-400ml (again varies) strongly suggests asthma.

It's much more useful to do this for assessing asthma because it is variable airway obstruction, and additionally not everyone fits the 'average'- mine used to be higher than predicted (and my peak flow still is) because I played the oboe for years, and doing a lot of sport can push your best up too. That means that 'normal'might not be your normal and it's important to see if reliever improved your numbers. However some people doing the test just see the first set within 80% predicted and don't bother with the reversibility, which I find sloppy and annoying. I and others could get more than 15% improvement after that and if you're looking for answers I feel that it's really worth recording, given what youhave said about improvement with medication.

Hope this helps!

[MrsCMK in reply to Lysistrata]

That’s helped a LOT! Thank you

I’ll get on the case to respiratory, armed with all of my new knowledge, to ask them what their next steps are 😉