Consultant doesn't believe my diagnosis

[Lilmix03]

Hi everyoneA couple of months ago I saw my respiratory consultant after a long time because I'd been having a lot of flare ups which needed prolonged doses of steroids and often antibiotics but for some reason he told me that he doesn't think that I actually have asthma and that my inhalers and nebuliser medicines are pointless. He's sending me for repeat resp tests as my last ones were 'normal' and that's how he's defining me not having asthma, although I don't know what normal is. I requested my medical records from my surgery and found out when I was originally diagnosed with asthma and put onto inhalers at 7 and eventually steroid inhalers around age 9 and the entry states 'Breathing has improved hugely since starting inhalers and mum reports she is coughing less and sleeping better', there are also several entries that state I was wheezing which would make sense given the asthma diagnosis. It's too late to put in a complaint about him as my appointment was in July and my surgery took ages to approve my request for my records but is there anything that I can do if he tries to dispute my asthma diagnosis and take me off my treatment once I've had my breathing tests?

[IncognitoC]

It could be useful to get a second opinion, consult with a different doctor/specialist. Obviously depending on where you live this could cost you money, if you feel that the doctor is wrong for his/her decision I think you can ask for a second opinion and they should have to provide you with that.

[Lysistrata Administrator Community Ambassador]

Ugh I keep seeing posts very similar to this on the forum and it makes me so cross! Obviously not because people are posting about it, that's what the forum is for, but that it seems to happen a lot!

It seems like even specialists don't always understand how asthma works - it's VARIABLE! Even with severe asthma you can have normal tests one day. Add to that the fact that spirometry for example is based on average values for someone of the same age/sex/height and you may not be at that average, and things like FENO and blood tests relating to asthma are currently geared towards specific types of asthma - plus steroids can push down your eosinophil levels even if you do have that type of asthma.

A one-off set of normal tests on one day is not enough to say you don't have asthma. Also, I may have misread it but it sounds like you may have had the 'normal' tests before all your flare-ups? Even if they were after, you could just have been having a good day or your medications were helping, the ones he thinks are pointless. That happens, because again for certain doctors who need to remember this, asthma is variable. Even across a single day! And the medications are meant to be bringing you to normal at least some of the time - if they are doing that compared to being off them, then it suggests they're doing something.

It's fair enough for a doctor to be open to considering other diagnoses instead of or alongside asthma - but they have to have a good reason for thinking that and be able to understand how to interpret tests and what they mean in relation to asthma.

Do you have to see that same consultant, or is there an option to see another one in the same clinic? I used to ask to see specific ones to avoid ones I didn't want - would just ask at the desk when I checked in. May not always work and you can't guarantee a replacement will be better, but worth a go?

May also be worth chatting to the asthma nurses on the helpline, as they can be helpful with advice on how to manage the system as well as your asthma. 0300 2225800 or WhatsApp [phone] Monday-Friday 0915-5pm

[Lilmix03 in reply to Lysistrata]

Nope you didn't misread. I started having a bunch of flare ups in 2020 so then I got originally got referred into the system and got the 'normal' results and got discharged but then in the last 6-8 months I've had a tonne more and had to start two different inhalers hence going back. I might speak to someone at my surgery and see if they can do anything/ send me to another consultant. The other annoying thing was that he questioned why I was now using a wheelchair and if I had the use of my legs--like that is an appropriate question to ask anybody and also not relevant to the appointment??!

[Mandevilla in reply to Lilmix03]

The question about the wheelchair might have been to see if the mobility issues were linked to the breathing difficulties, so I can see why he might ask about that. But it must be so worrying having someone telling you they don't think you have asthma based on one set of tests, and not knowing what he is going to do about it. I hope you manage to get a resolution to this soon.

[Homely2 Administrator]

This approach is not abnormal. I had a abnormal spirometry test, they then put me on prednisone for a week, then one week later gave me another spirometry test, which was then clear. They then said my spirometry was fine and the first test was an aberration.

So unfortunately you have to live with this sort of attitude from some consultants, who do not understand that asthma is variable and your spirometry results are effected by your medication.

I would at this stage not be too bothered by it, do your repeat tests, and then if they are clear, just listen to your consultant and if you do not like it ask for a second opinion. Prior to this have a chat with asthma UK.

[Patk1]

Yr gp is Yr main provider of advice + treatment.id make an appointment to see 1 u r familiar with or Yr asthma nurse there to discuss these issues+ your diagnosis.It maybe worth doing a peak flow diary + notes of how u are- symptoms,or not etc.ea day.

All the best in getting support+ reassurance u need x

[Anselm198]

Why is it too late to put in a complaint. It is normally 6 months from the time of the incident. I would complain, it's the only way that these Consultants will learn and their arrogance challenged.

[Lilmix03 in reply to Anselm198]

When I looked on my local hospitals website it said 1 month.

[Anselm198 in reply to Lilmix03]

Sounds like they are making up their own rules rather than going by the law

[Poobah]

I came across this article some time ago and have shared it ever since. Hope it informs your decision.theguardian.com/healthcare-...

[peege]

I'm reminded of my first visit to a consultant who demanded proof of my 5 x pneumonia and many infections. My gp was furious having written a clear letter with dates, however I still had to pay for photocopies of each diagnosis (including the two pneumonia which were diagnosed at his very own hospital 🙄. I would get copies of all the wheezy mentions in your medical records and the improvements to breathing. It's very time consuming indeed, I had a sheaf of paper for my next visit to the con.

[Chip_y2kuk]

That sounds awfully familiar to me

I often have frequent steroids and antibiotics for chest infections (every few months if I'm lucky)

I've been told a number of times my chest is clear, it's anxiety .... ive also been told its not asthma its my heart .... along with tons of other "theories"

Ive had 3 respiratory teams and a severe respiratory team... along with loads of other referrals (endocrine, immunology tests etc)

[ellamental]

My god daughter had a similar situation and saw a private GP and then was back on the meds she needed. She has private medical insurance for self employed people. My sister is with the beneden which is cheap but a friend just pays for a one off GP in order to see someone quickly. Just an idea. Not how it should be obv. Or ask for a second oppinion and to see a different consultant.