I was wondering if I might be able to pick your collective brains please?
I was diagnosed with asthma in June this year with a PF difference of 42%.
I was short of breath frequently. I couldn't climb the stairs and speak at the same time. I had to sit and wait to catch my breath after having a hot shower, I stopped wearing perfume because I was getting blocked ears and nose from it. I generally felt like my lungs couldn't refill properly. Eventually kick started an asthma investigation when I rang the drs begging for it after hanging over my kitchen sink desperately trying to catch my breath knowing that if I didn't it would very quickly become out of my control. Mercifully, I did manage to dial it back but it was very frightening. (It wasn't a panic attack; I've had panic attacks in the past but this felt very different. It was solely physical in my lungs, if that makes sense.)
I started taking my brown preventer inhaler morning and night. Also took my blue inhaler a few times.
Now, in December, I have a PF difference of 8%. I stopped taking my brown inhaler with any regularity and eventually stopped. I've not taken it in 3 months (bar a week in Oct when it made me anxious so I stopped again) but I now don't feel any of the symptoms I did. Showers are fine. Walking and speaking is fine. I do still feel short of breath on occasion and I struggle to fill my lungs but it's much much further between episodes now.
I have had a feeling of having an elastic band around the bottom third of my lungs for at least a decade. One Dr thought it might be exercise induced asthma but didn't take it further and I didn't push it. 🤦🏻♀️ I also was a heavy smoker then so put a lot of it down to that. (I quit my 20+ a day habit 6 years ago.)
At my last appointment my GP intimated that I'd been too often recently so I'm hesitant to discuss it with her until I absolutely have to.
I wondered if it might be seasonal asthma but can it be that bad in summer and almost non-existant in winter? 🤔
Asthma definitely can be seasonal for some people as it depends what their triggers are - if it's allergies like pollen, for example, then someone might well be "ok" over the rest of the year. However, the brown steroid inhalers are supposed to be taken all the time, even when you're ok. They take a couple of weeks to kick in and sometimes longer to embed properly so if you're not taking it then it won't be ready to work when you do need it - either for known triggers or unknown ones or even new ones that crop up.
If you have uncontrolled breathing problems, and the GP hasn’t helped you find a solution, I don’t believe you can attend too often! I say this as someone who was told by their GP not to take their child to hospital when she had very bad breathing episodes. Ignore it!
Because when my daughter finally saw the right GP and was given the salbutamol weaning regime (in her case) and that GP pushed for her to be referred to a respiratory consultant, and she started getting better, it was only then that we stopped going to the GP so much!
Unfortunately not just asthma, issues with my thyroid, my throat, and a swollen lymph node unfortunately all happened in succession so now she's made me feel like a hypochondriacal time waster. 🙄
That's the joy of these forums I guess. A mountain of information and experiences. ❤️
Terrible the treatment your child received. The arrogance of medical staff never fails to astonish me.
Is there not another doctor in your practice that you can see. Clearly, you’re not a time waster and anyway the friends of mine that are GPs have patience with ‘time wasters’ in this respect, as it’s sometimes an elderly person who needs human contact, or a younger person with anxiety, I.e. there’s something underlying that needs attention so they give attention. I speak as someone who when first diagnosed but not getting the right treatment feared they (the surgery) must have marked my file with a big H for hypochondriac as I felt I was having to visit too often! But actually when I did eventually see the right doctor, and got referred to a difficult asthma clinic and got the right treatment, I started to improve, and I remain very cross about that round of visits I had to make, and the self doubt it caused.
As others have said, the brown inhaler is a preventer and should be maintained for that reason. Asthma flares are caused by a bundle of triggers (e.g, stress, exercise, pollen or whatever) that progressively aggravate the inflammation and the preventer is what (helps) keeps it under control. That is, you always have asthma - well-controlled or poorly controlled- it doesn’t go away, and you want to keep it well controlled by identifying and avoiding your triggers as much as possible and using therapeutic methods of control such as the preventer inhaler, and seasonal allergy medicines, which are other tools in your toolkit to prevent a flare. It may be a specific allergy, (pollen or rapeseed for example) that means your symptoms flare only seasonally, but it would be good to identify your triggers if possible (with ige test) so that you can tailor your toolkit accordingly - along with an action plan. I guess the point is that with underlying inflammation (the elastic band you describe), you don’t want it exacerbated so that it spirals out of control.
Yes. This is all excellent advice from Autumn Hedgerow.
Self-doubt is, yes, the seed that GPs sow when they tell ill people to suffer in silence.
I have never been told by a specialist - private or NHS - that I or my children have been to the GP too often. They need to have an accurate pattern of GP attendance & GP notes, that tallies with your needs, so that they have a record of your problems.
Vent number 2:
I took my son to the GP 100s of times when he was 0-5, it was not just a problem I had with my daughter. Several GPs in my practice told me it was normal / acceptable for him to be tired all the time, have diaorrhea all the time, have infections that started as soon as his last set of a/b finished, have a distended stomach, night sweats, continuous low iron etc etc.
One GP refused to believe me when I told them that my son had just been given a diagnosis of pneumonia and pleurisy from A&E, who had also told me to report it in person to the GP. I told the GP that a consultant in A&E had given my son that diagnosis without taking a chest X ray - true. Because that is not best practice - and yet A&E staff decided his symptoms were so definite the X Ray was unnecessary - the GP refused to believe it. Of course they didn’t apologise when they received a note from the hospital 2 days later.
I took the decision when my son was 5, because the GP / general paeds were no help at all, to put him on a Gluten Free diet. He is now never tired and only once a year or so succumbs to infection, is growing much better, has a flat stomach, a healthy gut, heaps of energy and restored normal iron levels.
The GPs who tell you your attendance is the problem, not your symptoms - in my very experienced experience! - are the less able, more beancounterish ones in the practice. Ask to see other practice GPs or change practice please. Don’t do as I did, please, and put up with bad advice and stonewalling for 4 years!
I was seeing a different GP but for some reason they've switched me to see my named GP each time. 😒 Might have to only make appointments on the day she's not in!
I understand that; this year was the worst it's been so it would seem it's getting worse.
I am a member of the thyroid forum here. Are you? I would really recommend if not. The level of advice is so much better, the questions more searching & the answers better researched than anything shared / delivered on the Facebook or other thyroid groups I have been part of.
To go back and summarise / see things all as a piece, you have been experiencing throat, thyroid, gland & breathing symptoms.
A few questions to arm you for your next GP meeting relating to all of your non-elastic band symptoms:
Did you have a Covid test &/or any blood tests done in June or since?
What are your thyroid levels and do you have raised antibodies - ie. an AI condition?
What was the throat / gland problem that you have been having?
Did the GP test your calcium / iron / Vit D / folic acid other vitamin levels then or since?
Have you ever had a coeliac (with low IgA) test?
I am hypo, have been for 6 years, and these vitamins (apart from calcium) are the ones the thyroid pages here tell you to keep level, to stay well and keep symptoms in check. You may know all of this already. The calcium question might be relevant to what you say about your gland and throat problems but of course might be totally fine.
As to your elastic band over the lungs feeling, have you ever spoken to a specialist respiratory doctor / asthma nurse about it, or only to your GP? I really recommend a call to the Asthma U.K. nurses - and making a donation to Asthma U.K., for all their amazing free work on our behalf - it sounds as if you are really in the dark and your GP is unhelpful.
Heavens, I’m thinking I need to join the thyroid group right now - I don’t pay any attention to my hypothyroidism usually and it now sounds like I should...thanks for the heads up Geogeor (although am not sure I want anything else to worry about on the health front 😕)
You also have a thyroid condition?! My comments on thyroid were for Geworgie - I don’t think I realised you had one too. Is it well controlled? And vitamins, too?
I’ve no idea whether it’s well controlled or not. It was very low earlier in the year at the start of Covid, so we upped my levothyroxin and it hasn’t been checked since. It doesn’t on the whole enter my consciousness except I’m now realising that I might be misinterpreting menopause and hypo symptoms, hopefully not. It tends not to be on my radar but now I’m worrying whether I should be more on top of it. Am ok on vits but no idea about iron or folic acid,
Sounds as if it could be a good idea to get it / any other unruly levels checked again now, before the next lockdown, if there is to be one. I just had my levels checked - first time since Feb - 2 weeks ago and discovered my ferritin was 3 and I was also properly anaemic. Yes, I can imagine that hypo symptoms - being so various and affecting your whole metabolism - could be easily confused with those of menopause. Do you ever seen an endo? Or just a GP? I am looking for a good endo.
I am! It's been enormously helpful. These forums are amazing.
I have Hashis, coeliac test was negative, vit D is high in range, B12, ferritin, and folate are in my boots but I'm supplementing those!
Have been referred for a thyroid scan to address the throat issue (pain and discomfort when I speak too much), and my swollen lymph gland is still swollen 4 weeks later. 🤦🏻♀️
I've not spoken to the asthma nurse since I was diagnosed in the summer!
It sounds pretty much like it could be asthma, and still not properly controlled. There is so much variability with asthma. It can be pretty mild and very severe, and people present with different symptoms, and different triggers. As someone already said, the brown inhaler should be taken daily, and not stopped without consultation. I was once ‘in denial’, or at least doubtful, but then things got much worse and I ended up in hospital. Such things can happen even if they don’t for most people.
Why don’t you speak to the Asthma U.K. nurses? I have found them invaluable in explaining things etc. Their helpline is 0300 222 5800, and they also have a WhatsApp line.
I agree with most comments here. A couple of weeks ago I stopped taking my inhalers for a few weeks. I was busy and working a lot and just generally forgot and I felt fine, I had no issues, I had no concerns and then as I was gently (firmly 🤣) reminded by my partner to take them ive been unwell. Not enough for hospital but 2 asthma attacks one where I thought i might need paramedics and I have been generally under the weather since. But its improving now. Its important to take your preventer but if you feel that the preventer isn't helping definitely go back to the gp and see if it can be changed. It took me 18 months and 3 inhalers to find a regime that worked for me as I have difficult to manage asthma and I felt much like you. But its your life that could end up being at risk so definitely contact another gp if you can x
It is so variable. The last few years, I’d been on the teeniest, tiniest maintenance dose, and even had blue inhalers expire.
From March onwards of this year it’s steadily ramped up, and I’m not long out of my first asthma inpatient admission in ten years. There are so many things that can affect it month on month; year on year.
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