Help or advice please

Hi -

Apologies for the long message in advance but I would really appreciate any advice / opinion here.

I am a 36 year old male - diagnosed with asthma since childhood. Been using Seretide for a few years. Asthma has been well under control. In January this year I became breathless very suddenly and was diagnosed with chest infection. The shortness of breath and tightness in chest has not gone although the chest infection cleared. The odd thing is my peak flow is consistently between 650 and 800 which is supposedly good and I don't have to use my Ventolin more than once a day. My spirometry test was normal and in fact showed my lung age to be 10 years younger than I am. I have had 2 chest xrays - both clear. My GP has tried treatment for anxiety, GERD and candida but this has not worked. I had a barium swallow test today for hiatus hernia but this was negative.

I am really getting frustrated now - is it possible to have asthma but have normal spirometry and feel like this? I don't have a wheeze or cough and I am not producing sputum. It is just this continual tightness in the chest and shortness of breath. I continue to take Seretide. My doctors surgery are covinced there is no serious lung disease and are not keen on referring me to a chest physician but I am getting very scared now.

Has anyone have any idea what this may be or what I should do next. Up until Jan 2012 I have been perfectly healthy? Any help greatly appreciated.

[yaf_user681_30355]

Hi madhatter, (love the name!)

There are a few of us on here that do not fit into the 'classic' asthma category e.g. normal or better than normal lung function results, normal or better than normal peak flow, no wheeze etc but continue having a tight chest and shortness of breath.

I would keep going back to the GP and go by your symptoms, maybe keep a symptom diary. It may be that you need higher dose meds to calm your lungs down and then you may return to how you were. As somebody myself with difficult to control 'asthma' that is what I always aim for. I have found GP's do do more if you keep going back.

Good Luck!

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Thanks JF. Symptom diary is a very good idea. Going back to GP tonight and will ask him about stonger medication. Got to be worth a go.

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With you on the 'normal' test results!! I have an above average spirometry along with only a small improvement following ventolin. Normal when I'm struggling (up until this latest flare up) I have no wheeze and good air entry and although peak flow drops, only drops by about 30% BUT I know when I'm struggling and respond to increasing steroid inhaler and/or tablet steroids. I find it difficult to get the doctors to give me any help, because on paper, I'm fine! Unfortunately it's just a case of pestering and trying to find a GP who takes a more holistic approach and takes into account YOUR symptoms. The symptom diary is a good idea, also note if the ventolin helps ease your symptoms or not, that's a big indicator! Good luck with your appointment tonight, keep at 'em!!

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Hi,

I'm another 'weird' one with the normal results but still symptoms. Sometimes I think it can be that with spirometry they'll go on your predicted best but that may not be your actual best, so what looks normal may actually be low for you, but many drs don't seem to consider this possibility, though admittedly it's hard to know someone's personal best with those tests as they're not something you can do at home.

Agree with Butterfly that finding a GP who will listen and pay attention to the symptoms is a big help - mine says there is no way the medication I have would be working if it weren't asthma as it's pretty specific.

Good luck with your appt!

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Thanks everyone for your replies and advice. Knowing other people have the same problem at least reassures me that it's not all in my head which I am sure my GP thought for a while.

I had my appointment today and GP has finally agreed to refer me to a chest physician. I have had a really rough day with my chest feeling really tight non stop - yet I've come home and done my peak flow and it is 800 ! Really bizarre. Fingers crossed for nothing serious. Will definitely a diary and peak flow chart in the meantime.

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Firstly I appreciate that my issues/moans and groans are very much irrelevant compared to some of the other posts I have read on here. My apologies.

I had my first consultants appointment - i showed him my peak flow & symptom diary which he said either showed my asthma is very well controlled. This would ordinarily be good news but the frustrating thing is that like my GP he seemed completely unable to answer why for 7 months now I have been so short of breath & tight chested. He did lung function tests which again were above normal. FVC 112% - FVE1 86%. I have been swimming and walking for the last month to try and help myself but this doesn't seem to have improved matters. There hasn't been one day in this time period where I have felt symptom free. I am sure that he thinks I am making this up but I can assure you I'm not.

Consultant did the following:

1) Blood test for alpha 1 deficiency - very scared about this - should I be worried?

2) Changed steriod inhaler from Seretide 2 x 500 mcg per day to Qvar 2 x 100 mcg 4 times a day - to go back to Seretide if peak flow goes under 600.

3) Ultrasound for possible gallbladder problem.

4) Suggested some physiopherapy to help breathing technique.

5) Go back in two months.

Far from being reassuring the appointment has left me even more confused and upset. I was firm & persistent but didn't get the answers I was looking for. I'm even starting to wonder whether I am making all this up!

Any suggestions?

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Hey madhatter, I first just wanted to point out, that don't feel that you shouldn't moan/groan just because you have seen posts on here that you think are worse etc, we are all living out own indivdual problems, and are all just as much a pain in the rear as the other and posting our own experienced etc do in a round about way help us all out!!

please don't ever think that you are making it up, as we can all vouch that it is very true and not just ""in our heads"".

also, please don't worry about the blood test, I know it is going to sound very pants, but don't worry because where is worrying going to get you, apart from flaring up your asthma through stress!? Ok granted if you are diagnosed with it, make sure you get all information possible that is relevant and help you, don't always do y what ""Dr Google"" tells you, as it can all seem very scary just reading it on a pc screen.

Did you not get the answers that you were looking for as you were so overwhelmed with everything that you forgot to ask the questions!? is so, do you have a contact email address for your new respiratory team that you can email with it all in, that way your response will also be wrote down and you can take it all in, in your own time then!?

Definitely give the physio a bash, I thought it would be a load of rubbish, but actually doing it has benefited me in the smallest of ways that I wouldn't even have though about, even walking up the stairs is different, and if you bond well with your physiotherapists, then they can help you with any breathing patter question you may have

also, probably a silly question, but do you take your inhaler through a spacer, as it could make a difference with inhalation of the drug!?

ok so now that I have rambled and rambled, I will leave it there hope it helps, or even if it take your mind of your asthma for the 5 minutes that it'll take for you to read my mass load of rubbish

Hope things start to settle down for you soon, and that you get the answers you with for.

xxx

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Thanks ©harlie_warlie, no rubbish at all - some really top & sensible advice there , especially e-mailing the respiratory team, hadn't considered that at all.

I will try and chase up the physio too, as at least it will feel like something is happening. I do use a spacer. My spirometry testing showed little reversibility which I was very concerned about but they seem to think that it is because the lungs are working well so again I should be positive about that. I really am anxious to get something sorted before the winter sets in again as I can't face the thought of more chest infections like the ones I had last winter. I do try and stay positive but there is a part of me that wonders whether I will ever feel like I did before this all started.

Thanks again for taking the time to reply

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no worries at all madhatter!!

i agree about wanting to get things sorted ready for winter, even if a clear direction or plan of what to do in the 'what if' scenarios.

this website i have found has been amazing for letting off steam in the past and writing absolutly random post and i have made some amazing friends out if it, to which im sure you will also!! if your worried about anything then browse through the website and see if its been mentioned before or randomly start a new post (and others would say the asthma nurses on the number up there ^^^^ are good also)

another probably daft question but do you have all the jabs around winter time like the flu vac and the pneumonia jab!!?? ive been told that if it wasnt for the fact that i had the pneumonia jab at xmas last year, the three lots of pnuemonia ive had again this year already was sure to have put me on the ventilator to which i was on last year. so sadly yes more time at the gp surgery, and more holes made in your skin but definatly worth it in the long run!!

sorry if ive rambled again

xxx

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Hi madhatter,

Just wanted to say everything that Charlie said! Lol!

This is a great place to sound out ideas, get info, support etc so pls don't ever feel that your issues aren't important, I've definitely learnt that the people on here are all here to help each other.

Take care

X

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HI Madhatter,

I completely get where you're coming from as I've been in your situation myself - everything looking fine but still the symptoms and the scepticism. I think I'm getting somewhere though (and have been tested for some scary things which I didn't have, luckily) so hang in there! There are a few of us on here as you'll find; this website really helped me as I found that there were others with my symptoms which weren't necessarily classic, and it stopped me from going completely round the bend when I was told it must be stress, in my head, 'just' bad breathing etc.

Charlie's given you some great advice so not that much I can add (I'm definitely one of the people who's found the nurses on here helpful - I'm always telling people to ring them lol).

Just one thing re the PF: firstly, it's not always a reliable guide. My latest consultant now does think I have asthma despite previous doubts; he listened to what I said about my triggers and symptoms and how things had improved with the Symbicort he put me on, but after looking at my PF charts he said there wasn't much difference between them when I was good and bad and they clearly weren't that reliable a guide for me - some people's PF readings seem very sensitive, others not.

Also, he said that my PF readings were above my best predicted so I ought to be doing better, but then also said that if my best really was 700 then 550 wasn't that great after all.

He then asked me to do a PF to see how I did it, and told me I wasn't really doing it correctly and was probably only measuring a short stretch of windpipe which wouldn't be affected. I tried doing it the way he said I shouldn't and even when SOB got something ridiculously high; practising with a video at home my best seems to be, while still unusually high, about 100 lower than before (but then I've been singing and playing a wind instrument for years - do you do anything like that, or maybe a lot of sport in the past, as I believe that can push up the readings generally?)

It might not apply to you and isn't necessarily going to make that much difference, but perhaps if you're seeing the physio anyway you could mention that you get very high readings and ask to check if you're doing it right? My cons said even if your lungs aren't doing that well you can get a pretty high reading doing PF the wrong way - so just a thought, as you may as well make sure you're doing it right!

oops I have rambled on for AGES - I hope this is helpful!

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Thanks Angelica and Philomela for your kind words.

Philomela - i will speak to the physio about peak flow. My GP did test my technique a while back and said it was good, but I am sure that before I became unwell, it wasn't as high as I am getting now(although I didn't do it often). What you say makes sense. Perhaps it is masking things. I think I get frustrated because my asthma was so under control for so long and didn't impact upon my daily life that now it is I am finding it hard coming to terms with it.

©harlie_warlie - i do have a flu jab every year (around October time) but my last pneumonia jab was in 2009 - i was told the pneumonia jab was something you only ever needed to have once in a lifetime. Is this not the case? If so I will make sure I get one this year.

Thanks again everyone for your kind words and support.

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if anyone's having difficultY being prescribed asthma inhalers/medication, I get my ventolins from <removed by moderator - advertising> I think they're actually cheaper than NHS!!?

Please do not order medication online as doctors should be aware. There is also the risk of fakes and side effects