Need advice or reassurance, really... - Asthma Community ...

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Need advice or reassurance, really...

Kinda_worried profile image
9 Replies

I'm a 24 year old woman who's been asthmatic since childhood. Hospitalised as a baby with bronchitis.

Around 5 years ago, my asthma came back horrifically. My doctor told me not to worry. I began becoming faint, collapsing on trains and after walking short distances. Shortly after, I started coughing up blood, and sometimes my skin tinted blue. The same doctor said it was fine. Told me to use my blue inhaler and I'd get better.

I got worse.

He put me on inhalable steroids which again, made me even worse. I started having severe asthma attacks, he took me off the steroids and gave me more blue inhalers and antidepressants.

The steroids he prescribed were deleted from my prescription history.

He gave me a brown inhaler and told me to use it as infrequently as possible, to rely on my blue inhaler, so I did.

5 years later, I can barely breathe, I've had multiple severe fainting spells and nearly drown at the end of last year due to having one in the bath. He said it should be fine and I should keep using my inhaler despite me using it religiously.

Over the last 5 years, he's diagnosed me with bronchitis, asthma, severe asthma, copd.

My chemist looked at my prescription last month. He noticed I've been prescribed a dosage only really used for 5 to 6 year olds. My chemist told me that using and relying on that like I had could of killed me;

My question is, is that true? I'm honestly a little scared and cant talk to my doctor about it because he brushes me off. What do I do? The chemist has proof I was given steroids prescribed by that doctor, and I do, too, but I also have proof that it's disappeared off my records. I don't know why or what to do...

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9 Replies
Chokit profile image
Chokit

You need to ask him to refer you to a respiratory consultant specialist who should be able to give you a proper diagnosis of your condition & recommend which meds are right for it...that’s a long time to be struggling with asthmatic type illness...get on the case & don’t take no for an answer...good luck!

robert1957 profile image
robert1957

hello

please research magnesium deficiency and symptoms of magnesium deficiency also research benefits of vitamin d3 and k2 Mk 7

GYPSYMITCH profile image
GYPSYMITCH

Hi, just change doctors and get a referral to a respirotry specialist. Your health is your primary concern, dump the doctor!

Go to the manger of the surgery and also see a different doctor one you can trust. If you are still not happy then go all the way to the GMC and they will carry out an investigation

You definitely need to see another GP either in your practice or change practices. Take a copy of your post what you have written and your concerns.

Going blue is a serious sign as is fainting dizzy spells indicating lack of oxygen.

But can have many causes.

Coughing up blood could be nothing to worry about but then again it might and a multitude of possible reasons for this.

I went to my GP and said I'm still coughing up blood 12+ weeks after infection and put me on fast track lung cancer referral he reassured me unlikely but get seen quicker and investigated.

You also need to make an official complaint about your Dr his attitude is appalling and frankly dangerous.

You can complain to Practice Manager or if he is the most senior GP in the practice I would go directly to NHS England and say going to them because no one higher in practice to investigate him.

Alternately, you can go to the GMC as its an individual GP this tells you what they look at gmc-uk.org/concerns/informa...

Do not worry re the medication disappearing. It will be in your history even if it has disappeared off your repeat list it will be in your medical notes. nhs.uk/using-the-nhs/about-...

Spikedog66 profile image
Spikedog66

WOW!!! You have been through the mill haven't you. Ask for a respiratory consultation and if this gp refuses you get rid of him immediately and go elsewhere, in fact get rid now. You seem a bit young to be diagnosed with Copd, it's seems you are a badly controlled asthmatic. Some of the diagnosis he has said needs investigation from a hospital e.g. Lung and heart scans.spirometry tests etc. If go blue and pass out please ring an ambulance, don't mess about.😊

StanChad profile image
StanChad

You definitely need to see an Asthma specialist, ideally at a Lung Centre. My son has been told that if you need your blue inhaler more than 3 times in a week, your steroid inhaler is not working. His new Consultant (a Professor, whom I researched online and requested an NHS referral to) said that his GP shouldn’t have kept prescribing the blue inhaler without seeing him as his steroid inhaler should have been urgently reviewed instead. Maybe speak to the asthma Uk helpline? And do your research as to where the best Asthma Specialists in your area are.

deelizzy profile image
deelizzy

Hiya! :)

You are NOT ALONE! Please get checked ASAP here's why.

I am 54 yrs old. Basically healthy (no meds), until now. I worked full time in an active job and my hobbies were horse-riding, regular hiking 5-15k, cycling, kayaking and waterskiing. All that has come to a halt with this recent, severe, asthma.

Basic breathing has changed. Things that I used to tolerate on a daily basis, just set me off now and I am scared! For example, any dust (dry mud/straw/hay/sawdust), hairspray, perfume, ANY smoking or STALE smoke, frying meat, BBQ's and wood burning fires all send me into a coughing frenzy. I cough so much I almost pass out. I am unable to walk and barely speak a few words after these attacks for at least 1-2 days. Yes, it hits me that hard. IT"S SO EXHAUSTING!

In the beginning of these sudden out-of- the-blue coughing frenzies, aka late onset asthma attacks; I had been using my Ventolin rescue inhaler so much (10- 12 puffs) with each attack. This excessive use of bronchodilators made my heart pound in my chest and I always felt nauseous afterwards. The worst part, is that these incidents were too frequent now. They happened two or three times a week! My husband and son were so worried because I spent my life like a zombie! I was grey like a zombie too... pale with these lovely black circles around my eyes. In weeks I went from super Mom/wife to walking-dead female. I was too sick for work and too sick to cope with basic activities of daily living.

I was so weak that I couldn't walk up the stairs to my bed, so I slept on the couch. I barely ate supper with the family because chewing food was tiring and I had a hard time catching my breath during meals. Let alone talk at the table. My husband became angry with me and my complacent attitude with all of this. I would always say: "don't worry, I am fine". He said I can't live like this and stated this is NOT NORMAL!

So, instead of trying to convince me, he took matters into his own hands and forced me to go to the hospital and get checked after these (bad) attacks. This was usually when I was on my 12th puff of ventolin, grey and weak, yet still coughing and wheezing or vomiting phlegm with my head in the toilet. Lovely....

Fast forward two months. I was in and out of Emergency (casualty) with no prior record of that type of activity. It was about five visits in only a few weeks for this asthma complaint. I finally found a compassionate and very concerned Dr who believed there was a definite problem and referred me immediately to a pulmonary specialist (and didn't ask if I had an anxiety issue)! He said that sudden, late onset asthma like mine, can be very serious if not treated properly and he had witnessed some serious scenarios that didn't end well. (Need I say more?)

Please let me stress that I was not the best patient because I was IN DENIAL of my ASTHMA illness... I wanted to believe it was nothing to be worried about, that i was really OKAY and going to get better soon. But, really, in my stomach (my gut feeling) I knew something was very wrong and it scared me. (I wanted to forget this was happening so it would just go away and I could have my old life back). My husband and son were the ones who insisted I get professional help. They forced me to go to the hospital after my bad attacks and I am now, very glad they did!

I saw the pulmonary specialist within two weeks of that referral. This promptness is rare in Canada. During my first visit with my new specialist, I had a full blown asthma attack in his office within the first few minutes. His secretary witnessed me walking in and talking/breathing normally till my airways did there thing and reacted!

Let me explain: He had a waiting room full of patients and some were smokers and some were wearing heavy fragrances. Enough said.

During my visit with him (in his wee office set slightly away from the waiting room) I was barely able to answer his questions with my coughing and gasping for breaths. Within a couple of minutes or a few words, I was completely unable to speak and started coughing uncontrollably and crowing like a bird with each tiny breath. He opened his office window for me and I quickly ended up leaning out of that window with my head, reaching for fresh air on my hands and knees (what a sight). He kindly supported and calmed my breathing while I took my ventolin from my handbag (I never leave home without it).

As he listened to my chest wheezing with his stethoscope, he calmly said: " I hope you don't have plans for tomorrow, because I am booking you now for a bronchoscopy!" He then prescribed me oral Prednisone along with the highest doses of inhalation steroid therapy. He explained the meds to me, gave me the prescription and said he would see me in the morning and not to eat or drink after supper in preparation for my surgery. He also said to keep my ventolin and atrovent close by and use them as needed. I was a mess!

It's been about six weeks since that day and I am only taking the Symbicort inhaler (maximum dose) with very occassional Ventolin and Atrovent (four days in a row with no attacks). I am booked for more tests including allergy testing as currently they don't know why this is happening. My bronchoscopy and lab work is at present, normal.

I really try to avoid triggers! I have left my hospital job (leave without pay for now) and am finding ways to make a bit of money by working from home. I am diligent with taking my meds as prescribed and keep a log book with my med taking/times and jotting down any triggers or positive notes (eg increased activity sans wheezing!)

My support network for now, is my family and friends. However, I am not too proud to reach out to counselling if needed. This would give the ones I love a break from my woes...

I have decided to finally embrace my white hair by letting my roots shine through and say good-bye to salon dyes and that whole inhalation toxic-type environment. These life changes aren't easy to accept for women. My beautiful animals are still a part of my life, but I am not physically able to interact and exercise them like I used to. Some days, are sad days, but as long as I don't have to consciously think about each breath I take? IT is truly an awesome day! :)

Bless.

From me to you!

MEZZ1 profile image
MEZZ1

I,would change your gp practice if you could, they don't sound that good. Asthma needs to be taken seriously, people can die from asthma attacks it needs to be treated properly.they should not delete anything off your medical file. Some hospitals have lists of available gp practice's with vacancies on. Your pharmacist might be able to tell you where to get one from. Doctors should listen to their patients. Sorry that you are having it rough at the moment. Don't stick with rubbish doctor's your life is just as important as there's is. Good luck.

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