Referred - again! :(

Went to see GP this afternoon. He wanted to know how I was getting on with the Intal,; said I was better than before on that and double Montelukast but it is still up and down a lot and according to the questionnaires about control I am not controlled, having to use Ventolin every day is not control!

So though he knows and understands my reluctance he has to refer me as he can't do anything more himself. Just getting fed up as this is the third time and the first two specialists were totally useless and just said there was nothing wrong with me. So hope third time lucky...it will be asthma clinic not general resp this time but even so, the first one I saw was a big cheese asthma guy and he said nothing wrong and was no help! At least this time I can tell them what the physio said this morning, which is that my breathing pattern is very good and she doesn't really need to keep seeing me regularly. So have that if they try to pin hyperventilation on me again, plus as GP points out I had a response to specific asthma meds so I must have asthma!

Sorry, this is a bit pointless and I know I could have it a lot worse. Just getting rather frustrated and fed up, and not looking forward to another round of people not listening to anything I say and asking me about whether I'm stressed.

[Hidden]

Oh I know the feeling when as you say they can't do anymore. Am waiting physio appt but cons. did reluctantly concede I have no signs of hyperventilation inc. normal respiratory rate... Luckily (shh touch wood lungs don't hear) I seem to be better with Atrovent/since sinus etc surgery & now also in the mornings since starting medication for reflux

Cons. said not sure what they can do as test results normal but if I get worse again this winter off to a difficult asthma clinic for me & ? see GP to organise it?. He could only think of the Brompton too which seems rather quick to me as if he can only deal with textbook cases. Apparently, it's not possible to have better than 100% of predicted best?!

As you say again, I could also be a lot worse. Could do with your GP to help deal with consultants. Have to say asthma nurse @GP also said it was a load of rubbish & have always been told I have classic symptoms & peak flow morning dips...

Anyway, sorry for the rambling but have you had things like sinusitis/reflux/postnasal drip checked as these can make lungs worse with the whole 'one airways' theory (reactions can happen anywhere as similar tissues) & co-existing exacerbating conditions?

[angievere]

You must be fed up, being fobbed off isnt nice. I'm a bit surprised to hear that using ventolin every day indicates 'uncontrolled asthma'. I take mine several times every day, often in the evening, or I wake up at night and take it. I consider this dosage to be a sign of uncontrolled asthma. I wonder if these questionnaires err on the side of caution??

Also, a locum once told me my son was hyperventilating when I knew he was very wheezy and tight. So I take that line with a pinch of salt now.

[Hidden]

Just had a slightly random thought - have you ever tried Ipratropium (Atrovent) or Tiotropium (Spiriva)? They both come in inhaler form and could be prescribed by your GP. They are usually used for COPD, but are sometimes helpful in asthma, and work as a reliever, but by a different mechanism to Ventolin. I've tried both and find them helpful, so it might be worth a try for you while your waiting for this latest referral?

Rubbish news that you've had to be referred again, but see how it goes (fingers crossed!) and maybe ask your GP to refer you to the Brompton if you don't get any help from the next consultant. RBH are very used to dealing with 'atypicals'!

[Hidden]

Thanks everyone for replies! I guess I am just nervous about seeing anyone except my GP as I am so weird and he is the only one who hasn't given up trying and actually listens! If only I could find a chest consultant with the same attitude and willingness to explore different avenues. Though hopefully the GP is going to be very clear in his letter about what he's after as he knows they were rubbish last time.

TJ, don't think sinuses are involved as I think I would have noticed that, it's generally all below the throat. Reflux is possible I guess, hadn't really noticed it though, not sure if I would? Such rubbish about not being better than 100% of predicted! Surely predicted values are based on statistical calculations of what most people of a certain age sex and height tend to manage, and that is going to be affected by the way someone lives eg if they do a lot of sport or singing, just like BMI is not accurate if someone is very athletic and muscular. Re other conditions, I do have this odd dizziness going on which I'm not sure is related; GP is prescribing to deal with the symptoms but wants to see if chest clinic can look into that as he thinks it's unlikely I could have two odd things that aren't related! Probably just send me off to cardiology again though who say heart is all fine and go on about stress, even though it was their stupid treadmill test which gave me the dizziness to start with!

Angievere, the ones I've seen seem to say you should need it no more than about three times a week, rather than several times a day as I seem to most of the time. I do throw things off though by not always taking it wheN I should and just putting up with it, because I spent so long with it not working and just figuring I'd have to manage that I forget now I can take it and a lot of the time it will work, even if it takes several puffs. Not a good habit, I know.

Wishes, I have tried tiotropium and it did nothing I was wondering about trying Atrovent though now I realise it's probably related to tiotropium so not sure if it will work. The Ventolin seems to be slightly better ATM but it does tend to give up when the going gets tough!

[angievere]

Whoops - just seen a typo in my post. I meant to say I take my ventolin several times a day/night and DON'T consider it to be a sign of uncontrolled asthma. Sorry about that. xx

[yaf_user681_30355]

Hi Philomela,

I understand your anxiety/worry, I've been there. Can you choose to be referred to a difficult asthma clinic? In my experience, they do do more tests and are used to seeing the less typical patients.

Also, following on from what someone has mentioned, I didn't think I had any reflux symptoms but my asthma improved when they tried me on medication for it. And is it worth trying either of those inhalers (can't remember the names) now you are on montelukast and intal as you may find they now work?

As you know with my medication, each addition slightly improved my symptoms so I am now an advocate of try anything! lol

Feel free to PM me as usual

Jac xx

[Hidden]

Lol angievere, guessed yi were saying that as didn't make sense otherwise!

I would like to go to a difficult asthma clinic even though I am not severe, just because as you say JF I think they would be more open to the weirdness of my lungs and not say all the usual stuff about PF and wheezing etc. But this will be the first time for regular asthma clinic so probably can't do difficult right off.

Tbh am just a bit surprised, actually went about dizziness really but then we got into the asthma discussion; even then I was just expecting him to say wait for the Intal, but perhaps he wants to get the ball rolling as there are long waiting times here (London was 3 weeks!)

EDIT: forgot to ask, GP said he was referring me and would write to the clinic, but didn't give me the usual form, which I've had the last two times. Could he just have forgotten? Thought I was meant to ring and book then GP writes and provides all the info they need, so a bit puzzled, anyone else had it done this way?

[yaf_user681_4328]

Good Luck

Hope it goes well and you get listened to!