Some of you lovely people know I have been struggling since the end of February with my voice and an inability to speak for any length of time. I’ve had to rearrange my Practitioner course for this Wednesday 24th of May. I am so thankful for the patience and kindness of everyone who has been affected by this.
I have not been writing or keeping in touch as much as normal as I have been caught up in my own personal storm. I’ve decided to share what has happened to me in the hope that it may help some of you and your loved ones.
Silent world
In November last year, I switched to a new inhaler for asthma. It was first mentioned to me in summer last year but my gut told me to stick with what I knew. I then had a conversation with a friend who is a Practice Nurse who said that her patients had found the inhaler (called Fostair in the UK) to be a good move. Unfortunately, I went against my instincts and switched. All was well in the beginning, but then things changed.
During the last week of February I started with a really sore throat and then completely lost my voice. I thought I had an infection but it was clear that this was not the case as I had no response to steroid tablets or antibiotics, neither of which I take lightly. This hoarseness continued. The soreness left me but I noticed heavy bruising around my ankles which arrived without any knocking or banging, it just quietly appeared. I went from feeling very healthy to feeling like I’d finished an ultra marathon whilst sweeping up in a cement factory.
Realisation
At the beginning of April, I was five weeks in. My vocals ranging from near silence, to the sound of a teenage boy’s breaking voice, I realised that the only possible thing that could be making this happen was something I was regularly spraying onto my throat – Fostair. Because it had worked so well with no obvious side effects up until the end of February, I had not associated it at all and I’d had none of these side effects with inhalers I used previously.
I should state at this point that many using this drug have had no side effects so please don’t panic if it’s suiting you. I just want to highlight this problem if you find yourself in the same boat as me. It appears many people notice side effects immediately which does make things slightly easier but no less distressing.
Trying to report harm
Patient information leaflets come with every drug. They tell you the potential side effects and warn you to contact your doctor immediately if certain ones affect you. However in my experience, the doctors involved in my care were completely dismissive of this instruction. I was ignored repeatedly. No information was taken or recorded. Each GP might just as well have been saying ‘nothing to see here, let’s look over there…’
This is not my first experience of trying to detail side effects and having concerns swiftly brushed under the already lumpy carpet. I was at an appointment with a B12 deficient patient who was taking Aripiprazole for psychosis. He experienced swelling of the eyes and the psychiatrist simply stated ‘oh that’s very a rare side effect’ and tried to ignore it. I stated ‘that it happens every day to this patient therefore it’s very common for him’ the psychiatrist didn’t know how to respond. And yet he could have helped enormously by validating the patient’s experience, by noting the side effects by discussing the MHRA Yellow Card (a UK government drug harm reporting scheme) and by helping the patient to understand how long they could expect to be affected.
A friend of mine had a coil fitted and within six months had unbearable symptoms and repeated doctors appointments for the state of chronic ill health that she now found herself in. Over the next year, due to the symptoms she experienced, she was offered: Antidepressants, HRT and antibiotics, she had also changed her diet drastically. Each time she suggested the coil might be at fault, she was told absolutely no, it couldn’t be that and her requests for removal were repeatedly denied.
She battled on, feeling dreadful and completely exhausted, a mother of two young children and holding down a full-time job. On another of her umpteen visits to the doctor her white cell count was found to be high so she was then screened for cancer which thankfully was not present.
Finally, after stating to her doctor, ‘I have tried EVERYTHING you have asked of me and now I want this coil out’, she got her wish. But this was still a battle, she had to stand her ground and fight her corner even at this stage, eighteen long months after it’s fitting. She felt instant relief upon removal and within days all her myriad debilitating symptoms resolved. But she’ll never get that 18 months back.
Colluding in shared ignorance and remaining silent about these harms never, ever benefits the patient.
How many GP appointments take this same route?
How much time is wasted?
How many lives are negatively affected due to being dismissed and shut down?
Why aren’t our doctor’s helping?
Why don’t they want to fill in the MHRA Yellow card or urge you to do it?
My side effects
The side effects listed on the PIL for Fostair described much of what I was experiencing: But, of the common side effects I had two;
The Uncommon – seven
The Rare – two
The Unknown – two
I found it odd that the heavy bruising around my ankles that I experienced was not even listed in the ‘Unknown’ category and yet if you research patient stories with Fostair as I have, others have also complained of this.
Anxiety and depression can also be side effects of this inhaler and others I know experienced this quite early on in its use. My overriding symptoms was the loss of my voice, difficulty breathing and loss of hearing and they came in succession over the past three months.
It’s also worth noting that a friend of mine who has a thyroid issue and was incorrectly switched onto Fostair kept having to clear her sore throat and complained of voice changes. Despite the fact that there are warnings about people with over active thyroid and Fostair usage, her symptoms were blamed on her thyroid dysfunction. There are many warnings so perhaps familiarise yourself with them in case you are having an issue too.
If it ain’t broke don’t fix it
I have researched this subject fairly widely now and have found that there seems to be a movement among many Practices to ‘switch’ asthmatics to Fostair as a matter of course. See image below. It seems the line generally used on patients is ….‘your asthma is not well managed, you are using your ‘reliever’ too often rather than just using your ‘preventer’ so I advise you change to Fostair.’
What the ‘switcher’ may not be pointing out, is that they are changing you over to a preventer and reliever in one – so what’s the difference? You are sill using a preventer and reliever and if it works well for you, fine. However, if this inhaler doesn’t suit you, the only benefit gained is that you are having to press your finger down on your inhalers four times less a day. The rationale for changing simply doesn’t make sense when it’s put to us in this way.
Two friends of mine have been offered this switch to Fostair even though both are very happy on the treatment they are on. They both described the irritation of the asthma nurse for their non compliance. Why is this? What exactly do they get out of switching you if they’re moving you against you will? Maybe this Formulary document and its links gives some insight?
So think about this, if you are given the same ‘choice’ and you are happy on your current medication, perhaps it’s ‘better the devil you know’ rather than the potential of experiencing harm?
Some people haven’t really been given a choice. They’ve been pressured into switching and after experiencing problems, they’ve found it very difficult to be prescribed their previous medication.
Spacers
I had previously understood spacers only to be used by people with poor inhaler technique but advice has changed. It seems that most asthmatics would benefit from their use, but this Information may not be passed to patients effectively. I had never used one until recently.
Further investigation and a long chat with a nurse at Asthma UK revealed that they feel Fostair absolutely MUST be used with a spacer. But, back in 2009 it was not licenced for use with one. The spacer allows you to draw in the inhalant at the speed of your breath rather than at the speed of a train and this has to be a good thing. Your asthma nurse may not be recommending a spacer to you, so perhaps it’s time to get one prescribed and maybe enlighten your nurse at the same time?Please see this film from Pam on correct use of a spacer.…it may be enlightening.
X-rays
I stopped using the inhaler immediately I realised what was happening. I’m sure some would say not to do this but I couldn’t bear to use something that was harming me. I rang the doctors to tell them about my experience and they insisted someone examine me urgently ‘in case something more sinister’ was going on…. They suggested a chest X-ray and camera down the throat. I declined these two offers and asked for help in managing what was happening and for an idea of when I might improve. What interested me was that out of seven doctors I have spoken to (five I saw face to face), none apart from one really wanted to admit it was the inhaler and none were interested in the bruising, just a real push to get me to have an X-ray. My research lead me to think that what I was experiencing was vocal cord dysfunction, since my chest was clear and I had no infection.
One doctor deduced that I would be free of symptoms in ‘two weeks’. That would take me to seven weeks from the initial symptoms. Sadly I just worsened.
The third doctor I saw told me I had a ‘chest infection caused by a sinus infection’ and I ‘must have suffered headaches,’ I said I hadn’t experienced any of what he’d detailed but he’d made his mind up so that was that. It was very bizarre. No listening, just queuing up ridiculous responses to my questions because he’d already signed up to his perceived diagnosis. He prescribed me antibiotics that he said he knew I wouldn’t take. He was right about that, I had no infection so why on earth would I do such a thing?
Apparently, doctors want to send you for an X-ray if you have a prolonged cough or sore throat with an unknown cause. That makes some sense, but I felt that we both knew the cause and I couldn’t understand why I needed a chest X-ray when my throat housed the problem. There was a real reluctance to acknowledge or discuss the side effects I experienced. Isn’t that a bit odd?
One doctor I saw was really concerned that I refused another offer of an X-ray, telling me I might have ‘laryngeal cancer’. I reiterated that we knew the cause so that was something I wouldn’t be worrying about.
What strikes me about all this is the lack of interest in the harm caused by something prescribed to me. The lack of interest in detailing this harm or in helping me to deal with and understand how long I could expect to experience the side effects. My problem was that I was continually asking for reassurance and a time frame for improvement but how could I possibly have achieved that?
I realise that doctors can’t actually help you to understand how to heal from drug side effects if they ignore it’s happening in the first place. They don’t gain any experience of how other patients have come through it. We are simply left to work it out for ourselves. My hope is that others have had a better experience than I have had and that their doctor actively listened and tried to find solutions, I’d love to hear your experiences!
Reporting harm
My local pharmacist urged me to ‘fill in the Yellow Card’. He had heard of others in the same position as me and showed care and concern. I would also urge you to fill in the Yellow Card if ANY drug causes you harm. It used to be that only doctors or pharmacists could do this but now we have the opportunity. This is how we can hopefully help others who come after us with the use of the same drug.
I was concerned that people using inhalers such as Fostair (who have no experience of other inhalers available) may be mistaking the side effects, especially if delayed and cumulative like mine, for something else. They may then find themselves on a conveyor belt of unnecessary, stressful and invasive exploratory procedures.
Three months later…
I have tried many things in order to heal my symptoms. I avoided caffeine, a good friend introduced me to lymphatic drainage exercises. I’ve also used bee propolis spray, Erisimo mother tincture (known as the singers herb), saline and salbutamol in a nebuliser but to no avail. I’ve tried to be patient, even though these past three months have been both terrifying and beyond frustrating.
After some vigorous and transformative acupuncture last week, I am ecstatic that my voice is back, my breathing and my hearing is so much better.
What I have described here is the antithesis of what happens with B12 deficiency
B12 injections are regularly stopped unnecessarily and not because the patient has reported harm but because the doctor perceives it. Even though the patient in front of them is often crying and pleading with despair at this safe and essential treatment being stopped.
How is that we have these two starkly opposite situations? One, a vitamin that people need and where harm in a patient on treatment is non existent, against drugs which can and do regularly cause harm but the effects are ignored and often the patient is encouraged to continue with it.
It’s plain to see that some GP’s get into the groove of protocol and procedure that is of little benefit to the patient. They can, by active listening help to build a bigger picture of drug harms, but is it in their interest? Are they allowed? Have they got the time? My own described experience of the dismissive nature of visible and audible harm creates a profound lack of trust of those in whose hands we are meant to place our lives into.
So the lessons for me remain…
1. Trust your instincts and go with your gut.
2. Fill in the Yellow Card if you have been harmed by any medicine.
3. Question everything that you are blindly expected to go along with – see if it makes sense, see if logic is applied, even if questioning makes the person you are questioning angry.
If something doesn’t make sense then clearly, it’s complete nonsense.
I am none the wiser about what actually happened to me. I only know that it has been a long slow recovery.
I am so grateful for having my voice back, for my family and friends and the users of my site who have ridden this wave with me, for Mrs G’s acupuncture, for Patricia for finding her again and for Damian’s patience in having to repeat just about every word he’s said over the past month.
Kindness always
Tracey x
www.b12info.com
PS. If you are struggling with asthma and have not explored the Buteyko breathing method perhaps give it a try. Janet explains the exercises for beginners well.
Totally understand what’s happened to you. I was switched to Fostair & felt I didn’t need it, having argued my point I have finally gone back to my old preventative. I too constantly had a sore throat on it.
Dear Christa,
Thanks for taking the time to comment, I am so pleased you managed to switch back!
Oh Tracey, poor poor you! It does reinforce what I constantly tell people who are moaning about doctors’ ignoring them. Always dress to impress and take a dressed-to-impress friend with a large notebook/pad when you go for an appointment. If the doctor thinks there is a witness, who is also taking noted, they will think twice about being as dismissive as usual. Wearing a smart jacket [power dressing in short] redresses the psychological imbalance a good deal.
The other point I would make, is what about CYP2D6 genetic variations? 7% of the population have a CYP2D6 ‘anomaly’ so that their liver enzymes do not process a vast array of common meds ‘normally’. These include Fluoxetine [prozac] other mind meds and many painkillers including often dental anaesthetic. So many women are told ‘it is all in your head’ when they complain the painkillers or anti-depressants do not work. Also note that this issue affects up to half the neuro-diverse population eg autism and others. Imagine [it happens to my husband] telling the dentist their anaesthetic does not work and being disbelieved.
Thanks for your insight D Dell, I will have a look into CYP2D6. I love the ‘big note pad’.
I did take a loved one with me to one of the appointments – where I was told I had a (non existent) chest infection etc and she was stunned at the lack of the GP’s listening skills. If I hadn’t been so scared at the time it would have been funny. There were more shocking event’s but the blog would have been a mile long!
Thank you for sharing your journey. Happy to see you are feeling better-
Your perspective is valuable for health care providers.
I was switched to Fostair due to using my reliever more.
My voice often comes and goes over a few days, my hearing seems duller, and lately my anxiety is bad and something I was able to manage a lot better but now can’t is depression.
I’m off to re read the leaflet and try and make an appointment at my surgery.
Thank you for posting I so so appreciate it 💛
Appointment made & I’ve highlighted my reactions on the leaflet you get with your inhaler & I’ll take ot my appointment next month x.
After reading the leaflet another thing I’ve had since being on fostair was a massive oral ulcer breakout. My dentist said it looked like the worst she’d seen, throat, sides & roof of mouth, tongue, everywhere. She said a bad form of gingivitis but after reading fostair can cause oral fungus, I wonder. I’ve asthmatic since my 20’s now early 50’s so know all about oral hygiene and yes I do get oral ulcers with B12 when I’m run down but nothing like this. So again thank you.
And I hope things are better for you now .
Elizabeth, thank you so much for taking the time to comment. I hope that your appointment goes well and that you mouth heals quickly. It is shocking the number of side effects of Fostair. I am feeling so much better now thank you!
Thank you Bean!
Dear Tracey, thank you so much for sharing this experience and the advice to question everything is one I can only concur, because had I not, I would long be dead, because my GP was an utter idiot ( ok, he is human, but as a senior partner, he should know better, and repeatedly lied to me about my test results, ending up with me in a wheelchair and permanent damage which was all utterly avoidable).
I would also like to add, if possible, that patients in the UK have a right to their medical information, especially test results, most surgeries will print a copy at reception if you ask( assuming the test is recent and results have returned) and no you don’t have to wait until the doctor has seen them, as I have been fobbed off with, and no you don’t need your GPS permission, my carer and I took a loud verbal stance in the reception area when my receptionist advised me my GP had said I was not allowed a copy of my B12 test results, we demanded to speak to the practice manager, and voila tests results were given ( and showed that my GP knew for years that I had pa and not only refused to treat it but lied to me repeatedly saying nothing was wrong). Sadly you have to educate yourself, rely only on yourself and fight every step of the way. Test results are a doddle to read, I was a scientist, but even a lay person can read them because they rather helpfully give you the range, for example it will read something like this MCV = 67 HIGH Range 22-35, and often highlight in red issues, and may even state if immediate treatment needed, so in the example above you see the MCV is way too high as the maximum is 35 so 67 is far too high.
I am glad to hear you are on the mend, even though little scientific research has been published for acupuncture ( I like to review the evidence, understand the mechanisms) I too use acupuncture because even though I still don’t know how, it really works for some of my symptoms, and has stopped me ending up in the emergency room once a month.
Sending you healing thoughts and gratitude for your ongoing support and just plain sensible useful information for us.
Dear Mrs Somerset
There really is no excuse for denying access to test results, but many still don’t know that we are legally entitled to them.
What happened to you is beyond shocking.
I have found the acupuncture to be phenomenal, not least because Mrs G stated at the outset “I think I can help you”. That statement alone was healing in itself. I find it is a brilliant therapy for all manner of ailments.
Thanks so much for commenting and for your lovely words of support!
How long will it take for doctors to realise they don’t know everything and can’t possibly learn everything they just need to be open minded listen to their patients and act accordingly take time out to research more and maybe learn something new each time. I know doctors are stressed and frustrated too overworked as well but listening to patients is beneficial to all concerned.
Absolutely Ann! x
This sounds like such a familiar thing. Had the same regarding the fact i have hypothyroidism and yet my go wanted to prescribe me medication to reduce stomach acid. I already have very low stomach acid, my acid reflux is due to that not too much acid.
She even went so far as to say, how can i help you if you refuse the medications i offer and i replied. I have a vast list of medications on my prescription im willing take but i pay close attention to current research and patient advocacy, so why would i take a drug that i know will harm me, would you?
She never answered.
Im wondering if they will offer this drug as ive had inflammation in my trachea since covid, but i’m getting every other test, inc antibiotics because my white blood count is high. Not once did a doc look into the whole Long Covid thing….
The nurse that does my yearly asthma check always suggests i got onto a preventer corto-steroid inhaler,which i always refuse due to the whole hypothyroid and steroids effecting thyroid conversion, which im already bad with.
Its a constant uphill battle.
At least my b12 shots still happen.
Kristen, thank you for sharing your experience. We are on the same page, if it doesn’t make sense why on earth would we follow the advice?!
So sorry to hear what you’ve been battling! So pleased to hear you’re on the mend…
So sorry to hear about your difficulties, Tracey, but glad you’ve found your own way through. We have to, don’t we? Thanks for your message here – it’s never been more important.
You were a great support to me when I struggled to get b12 injections for my husband and I’m eternally grateful. Of course, they were stopped when other ‘priorities’ took over, but, as he does not suffer from Pernicious Anemia, I now purchase good quality supplements instead. I don’t bother to argue with brainwashed ‘medical’ professionals’/drug pushers any more.
Are you aware of the amazing benefits of Colloidal Silver for throat/lung/respiratory issues? It can be bought online but I’ve taken the liberty of sharing a YouTube video about a kit which allows you to make your own very cheaply. A friend talks about a kit that she and her partner have designed and made based on the principles of the great Bob Beck.
https://youtu.be/GIZ_NwJeL_4
Dear Judith,
Thank you so much for taking the time to comment and for your kind words.
Thank you too for the link, I’ll take a look!
Tracey x
Thank you for this. I too was switched to Fostair a few years ago. I don’t entirely remember my symptoms, but I know I felt worse, and ended up stopping all asthma treatments, whereupon I felt better. A year or so later I was struggling (exercise induced asthma) so have requested and use a powder ‘Easyhaler’ Beclomatasone, which I’m fine with. I had previously been diagnosed with an allergy to the propellants in the gas inhalers (by kineseologist) – although that too I ‘knew’ as I always felt more short of breath after using the inhaler. Often, we know best – just need confidence in our ‘knowing’.
Dear Susie
Thank you for sharing your experience.
I have heard many accounts of people being able to stop treatment completely and this happened to me for a long period too.
A lovely soul emailed regarding Buteyko which I had forgotten to add to the blog, so I will do that now. You may be aware of this but if not please see https://www.youtube.com/watch?v=_vyElDWey3g for an overview.
Tracey x
Hi Tracey,
I am so sorry to learn of this. The person who knows their body best is the person who lives in it. I am glad to learn you are on the mend, I do hope it continues. It is very pleasing to read that acupuncture helped. Most people take for granted the ability to breath, hear and speak.
I am a little concerned of the attitudes that not only you, but the person taking antipsychotics and the lady with the coil were subjected to. The person suffers on a day to day level and it affects not only that person’s quality of life but extends further – children, friends, colleagues.
Is it not part of a health professionals’ role when they prescribe and/or choose a treatment then its efficacy is monitored and documented ? Apparently, it is called outcome.
The Yellow Card Scheme is there for a very important reason. We all are individuals (it’s called the phenotype) which is the reason we can react to latex, medication, medical devices, certain foods, pollen and the list goes on.
A wise doctor once said, ‘There’s a PhD in every patient, if only we take the time to listen.’
X
Thank you for your very wise and kind comment Adversity2stars!
Thank you for sharing your experience Tracey, I suspect I may be offered Fostair in future as I have asthma. Forewarned is forearmed.
I hope you recover soon.
You are very welcome x
I read this a while ago. Sorry you had to deal with this and good on you for your solve.
It seems there are three categories of patients. One that gets lucky and what the physician believes works. One that never knew there was a solve available. One that finds their own solve.
I am in the USA and can write my questions prior to my appointment. Then I do a follow up writing out the answer or lack of an answer.
I am a consultant in the environmental field representing clients with various government agencies and judicial boards. When you hire me it is a collaboration for your benefit. Physicians are not trained to collaborate with those that pay them.
I am also noticing that physicians are trained and not educated. This has value, it is a limitation.
Tracey, I’m so sorry you had to go through all that, it’s really bad when health symptoms scare you and the doctors don’t seem to want to help. This is a subject close to my heart as my wonderful late mum suffered with asthma all of her life. I had asthma for a short time from my late teens to early twenties (funniliy enough though and I didn’t know it at the time but that’s when my symptoms of b12 deficiency became more pronounced) In the ’80’s my mum was prescribed her usual ventolin inhaler and a ventolin suspension, which was absolutely brilliant! She gave some to me a few times and my asthma symptoms would vanish in the blink of an eye. I wonder, do the quacks – ooops, I mean, doctors still prescribe it? Probably not as it worked really well and they don’t like that do they? Incidentally, reading the links I noticed that ethanol is an ingredient in that Fostair inhaler (sounds like forced air!) this is what a quick google says – “Ethanol is harmful by ingestion, inhalation or by skin absorbtion. Repeated contact can dry the skin resulting in the skin cracking, peeling and itching. Ethanol can depress the central nervous system, the eyes and upper respiratory tract (nose and throat).” It beggars belief that they add substances like this to medications – but then again, nothing surprises me with these lot anymore. I’m so glad you were able to sort it out but it’s very concerning that it took them so long to do it.
Thank you Andrea, I hadn’t looked at the ethanol part, I did yesterday and see that they state that the amount in an inhaler is ‘less than the 40mg you find in a banana, but as we know, bananas aren’t usually inhaled!
It has been a trial and continues to be I am still struggling with my hearing and my voice isn’t quite back to normal yet. I hope that since I’m six months in, I’m not too far from getting there! It does indeed sound like forced air, good spot!
All the very best
Tracey x
I am so sorry to hear this Tracey. You are such a voice and resource in the b12 community. Reading all your notes I see a lot of commonality with my own experiences. Please please consider mold testing your living spaces. Please. Mold left me with such a b12 problem which gives way to thyroid problems as well as b1 problems which are a lot like B12/PA. As well look up T. C. hale on YouTube. He is not mold aware BUT he lost his voice and no doctor over years could help him. So he, like so many of us, helped himself. Maybe one of those three things (B1, mold or TC and digestive processing issues) is a missing link. As well Paul Robinsons for thyroid. My thyroid issues (medicine doesn’t do that one well either) left me with a very tight throat and talking was straining. And FWIW I’ve tangles personally with all of the above. And resolved it.
Dear Margaret,
Thank you for taking time to comment and share your experience and information.
I am fairly sure we don’t have a mould problem, but will check, your comment will help others too. I write about mould on this page, https://www.b12info.com/b12-and-toxins-antidotes/ please let me know if there’s anything you think I should add?
Very best wishes
Tracey