Why am I made to feel I’m making my a... - British Heart Fou...

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Why am I made to feel I’m making my angina up?

Mallowme profile image

Had a really unproductive telephone consultation today and need to let off steam. Previously I’ve been told I ‘probably’ have microvascular angina and prinzmetal angina but never had a confirmed diagnosis so was trying to get a little clarification. Today I have been told that only severely overweight people and diabetics get microvascular angina and I am neither, it’s very rare and that all my chest tightness and ‘angina’ pain is probably nothing to do with my heart but if taking the Nicorandil and Monomil makes me feel better then I might as well continue! On asking about being referred to a mva specialist as the only reason I wasn’t getting so many symptoms was that the meds helped he told me to “pick someone from the internet you like the look of and ask your doctor to refer you”!

Any ideas how I can get some proper help and support, I feel selfish with Covid going on but I’m also sick and tired of being made to feel like I’m stupid, and irrelevant. I’ve even been tempted to stop all meds just to ‘prove’ I’m not making my symptoms up or prove to myself that I’m not imagining it all.

Then I realise how terrible that is and that it could have serious consequences, I know how ill I was before taking them.

When I asked about the tests suggested on bhf his response was that we wouldn’t want to bother with that!

Sorry rant over, thanks for putting up with me.

57 Replies
Milkfairy profile image
MilkfairyHeart Star

I am screaming with frustration with you! In my 9 years of living with vasospastic angina I have had some similar problems.

I do have a confirmed diagnosis as I have had an angiogram with acetylcholine during which I had vasospasms in my small and large coronary blood vessels.

My BMI is 21, I do not have diabetes. No risk factors for heart disease.

I was repeatedly told I couldn't have angina.....well I do and my angiogram with acetylcholine confirms this diagnosis.

Where in the UK are you based?

There are several centres taking part in a study for a possible new treatment for microvascular angina.

Details here.

clinicaltrials.gov/ct2/show...

Ask your GP to refer you one of the relevant centres.

St Thomas's hospital in London is carrying out some research too.

isrctn.com/ISRCTN94728379

I would be very tempted to make a formal complaint about the disrespectful and inappropriate behaviour of the doctor who spoke to you.

Have a look at this website written by 4 patients with a combined lived experience of over 50 years. They are supported by over 25 world leading Cardiologists some of whom are in the UK.

internationalheartspasmsall...

Mallowme profile image
Mallowme in reply to Milkfairy

Thank you. Just so fed up with being fobbed off. What ever this is its sort of controlled but I feel so unprepared even after 15 months. I have debated complaining but not sure it will make any difference.

Milkfairy profile image
MilkfairyHeart Star in reply to Mallowme

I know it's not easy.I did complain and my care has improved and I received an apology.

The hospital I attend is taking part in the Zibotentan trial. A couple of years ago they wouldn't have been interested.

It's taken me sometime to find the right Cardiologist to support me.

I talk about how my poor experience of care has effected me to Healthcare professionals.

You absolutely do have the right to be treated with respect and dignity. This includes the cause of your chest pain being investigated properly.

Actually, for all he sounds like an arrogant, potentially gender biased but definitely, otherwise completely useless lump, there is one bit he’s not wrong about: find a specialist on the internet and ask to be referred. Assuming you live in England, you have a legal right to request an NHS referral to any consultant of your choosing that works at an NHS hospital in England. Users aren’t allowed to name consultants on here, but there are resources online to track down doctors with particular special interests, and I’m sure other people here with an MVA diagnosis may be able to message you privately with some possible suggestions of how to find the right person closest to you or within a distance you feel would be reasonable to travel. You don’t have to accept poor, substandard care, and you know that you were unwell prior to appropriate medication, so you also know that there is more investigation needed to properly get to the bottom of what’s going on.

My situation is different to yours, but I learnt the very hard way not to be fobbed off when it comes to my health, but it was a lesson I unfortunately had to learn more than once. Don’t be an idiot like me, and don’t let an idiot like him put you off from getting the answers and care you deserve.

Mallowme profile image
Mallowme in reply to Charlie_G

I didn’t know I could ask to be referred to someone else. Years ago I had adenomyosis and the only way I could get the hysterectomy that was the only treatment was to get a second opinion at another trust. My fantastic gp sadly is off on long term sick but I think I will try and speak to another one.

That’s really helpful info. Thank you.

Charlie_G profile image
Charlie_G in reply to Mallowme

I think they like to try and keep it secret, whilst trying to look like they’re not keeping it secret, if that makes any sense? In any event, it’s very much your legal right, so don’t let anyone at all tell you otherwise.

nhs.uk/using-the-nhs/about-...

Good luck, and I hope you get to see someone who has a clue and at least a semi-decent attitude soon.

I had one cardiologist who said I was putting it on, come again in 3 yrs, fortunately my gp realised that I needed to see someone else. 6 months later I had another stent. Trouble is, if you don't fit in to what they consider normal symptoms, they don't want to see you. One time my gp tried to get me to take ventolin puffer for my breathlessness. Make sure you stand up for yourself. Take care.

Mallowme profile image
Mallowme in reply to MONIREN

Why would we put it on? It’s so crazy. Makes me feel I’m crazy!

Hi mallowme. No further suggestions to add to those you have been given, especially by the very knowledgeable milkfairy. Just sympathy that you have been treated this way. Some consultants, and indeed GPs have the amazing capability to make you feel about 5 years old again. Sometimes you have to remind yourself and possibly them as well that just because they can't find the problem, does not mean it doesn't exist. Keep pushing, it is your right to treated well and appropriately. Best wishes x

Mallowme profile image
Mallowme in reply to Nettekin

Thank you. I felt bad making a fuss but now realise it’s the only way to get anywhere. The worst thing is I don’t really think it would be any different without COVID. Some doctors just don’t seem to be bothered.

Sue-Ann11 profile image
Sue-Ann11 in reply to Mallowme

Bless you. Don’t feel bad for making a fuss! This is your life and you need it! Sometimes doctors forget that we are consulting them over matters that are life and death to us. Yet they treat us like just another paperclip on the desk. This person needs a wake up call, to be reminded that each person they speak to is a human being and has a right to be treated as such. Just because they completed their medical training doesn’t make them a better person or more important than anyone else, just more knowledgeable and they have a responsibility to use that knowledge appropriately. That is what they are paid for. If they are like that with many patients your letter might not be the first…or last…but you deserve better treatment. I’m furious for you…you might be able to tell! My only comfort is I have a strong theory that ‘what’s goes around, comes around’ They will get payback at some point.

How infuriating for you and how dispiriting. Its bad enough feeling rough, but to be treated with such contempt and dismissed is beyond the pale. Do your research and ask for a referral to a specialist who has knowledge of MVA. I'm afraid that these sound all too familiar and may well be gender based comments. My sister (my whole family has heart problems, history you would not envy) had similar and was treated for 'problems' with her oesophagus and had botulism injections in her oesophagus several times before a young and more empathic cardiologist remarked 'MVA', did necessary tests and put her on correct meds which have really helped to control symptoms. Follow Sue-Ann11's comments and do not be a paper-clip!!

Please stay in touch with us and let us know how you get on chasing a diagnosis.

Mallowme profile image
Mallowme in reply to francesw47

I think that was part of my problem, I told him about the tests stated on BHF when he said there was no way to diagnose either. From then on the call deteriorated, I didn’t even feel I could ask for advice about the medication as he had no idea what Nicorandil was, let alone whether I needed to change even though the previous cardiologist prescribed it.

Hi Mallowme, I really feel for you, some years ago my friend had a rare form of cancer, she was put in the care of a specialist and told he was the best there was, very high up in his field, he treat her and cured her, but she said he was nasty, unfriendly, unsympathetic and treat her like she was an illness and not a sick and worried person, she said the ordeal of having to see him was worse than the illness. What I am getting at is, besides not getting what you need medically you could also do with a bit of TLC (tender loving care) from those people you see. We on this forum cannot treat your illness, but we can offer lots of TLC. I hope you get some answers soon from the nicest consultant out there. Take care and keep safe.Ruth

Lovely to hear your friend recovered and thank you. I’m hoping to battle away and find a cardiologist who does understand. Tlc always welcome. Xx

You are not alone in this unfortunately. I too have experienced the same. You're made to feel like it's all in your head and then if you happen to have another underlying condition it's quickly pointed at that for being the issue even though you know the symptoms are completely different!

I had an angiogram last June after a rather polite but firm argument with the cardiologist in a telephone consultation beforehand because he was still not wanting to go ahead and do it. This was despite two separate incidences to A&E both times by ambulance. My angiogram did show my arteries going into spasm but having finally got a copy of the discharge summary he's still put it as an IF this is the cause!

My doctor has since changed the diagnosis from Nov/Dec to non cardiac chest pain?! So the fight continues for me too.

But weirdly was among the priority group for getting the Covid vaccine and very much doubt it would have been because of the other 2 underlying health conditions!

So please please dont feel it is you. ❤

Mallowme profile image
Mallowme in reply to Ninjanoo

I’m starting to wonder whether it’s a ‘scheme’ to get cardiac patients off lists. After all if they can say it’s possibly not cardiac (even though medical breakthroughs are saying it is) then they can discharge until things get so bad you’re back in a&e. I too was in priority group.

Hello MallowmeI agree with all answers above and am very frustrated for you. I have felt the same and found it difficult to be assertive and push for myself when feeling ill and felt I was going mad at times some doctors have been condescending and many have no understanding of MVA or vasospasm. All my understanding and information and knowledge of the condition has come from this site and milkfairy in particular. I haven’t a definitive diagnosis yet either but my current cardiologist has changed my medication so I am taking a calcium channel blocker instead of the beta blocker I had been on for the last 5 years and this has made a huge difference to me and I am able to do so much more now that the medication is right.

I hope treatment and diagnosis for this type of angina improves as awareness increases.

How would we manage without BHF. At least the doctors can’t say the website and info is wrong as I was told to use the website for info after my first a&e visit. Without it (and Milkfairy and everyone on this forum) I would be clueless. Xx

So agree with you and completely understand that you need to let off steam. And I need to as well! Are cardiologists completely unsympathetic and unable to connect with their patients - or is that just the ones that I’ve met?

Four months ago I was sent out of hospital with a diagnosis of unstable angina and told by the discharge nurse that I needed to be v careful. On Monday I was finally contacted (by phone) by a cardiologist and told that the diagnosis was wrong, though he is mildly concerned about asthma…… so four months wasted in worry for me and my family, four months of trying to get answers and work out the future etc. And no suggestion as to why I’m still getting chest pains, swollen legs, breathlessness and other angina symptoms. And absolutely no apology of course.

I’ve been lucky though as I had a regular vasculitis appointment on Tuesday and was able to talk to a real consultant after a series of real blood tests. It looks as though I have vascular spasms which can mimic angina, but are very hard to diagnose, so I’m going ahead with that idea.

So can you find another doctor to talk to, or be referred to another clinic? We can’t blame everything on COVID and a great many people have become more ill because they’ve been taking care not to bother anyone. Good luck

Mallowme profile image
Mallowme in reply to BronteM

I’d have thought people who deal with the heart would have a little more heart. Maybe they’re so used to seeing it as an organ they have forgotten the compassion side. Im going to try and speak to a gp. None I’ve dealt with before are available frustratingly so will be pot luck.

It sounds like your doctor was talking out of his ****hole. I have suspected microvascular angina as the tests I've had show only " mild to moderate" blockages in one of my main arteries.

Milkfairy is the real expert here but s/he referred me to one paper showing that something like 40% of all angina sufferers - like me - have no major blockages. The consultant whom I have very recently seen on a follow-up appt seemed to have no knowledge of MVA when I mentioned it to her. I'm just on the standard aspirin/statin/amlodipine treatment that most heart sufferers seem to be taking. My symptoms seem to be stable so no doubt the consultant sees my treatment as a success.

I have a friend who also suffers from exercise-related chest pain and he is of the belief that the pain is non-heart related but that may be wishful thinking encouraged by his cardiologist!

If I felt there was a specific treatment for MVA I would push harder for the gold standard test that Milkfairy mentions. The trials referred to above look hopeful.

You are not alone!

Mallowme profile image
Mallowme in reply to jerry12953

Wouldn’t it be lovely to actually have a treatment. One day I’m sure. My main arteries were clear too and it was when I came out of the cath lab she said about possible MVA and vasospastic angina. I’ve been told yes no yes no ever since, All I asked was how to get some continuity.

As I read, microvascular angina is difficult to diagnose and expensive. I think that its's done via a specialised angiogram or MRI which I think measures blood flow. I had an angiogram a week ago, and the cardiologist said the arteries were clear, but that I might have MVA. Trouble is that as far as I can see the treatment for MVA is medical. They can't unblock the tiny arteries. Any treatments are somewhat experimental.

I have some sympathy with your cardiologist. They have had a pretty torrid time as a result of Covid, and many are worked off their feet trying to get through a backlog. Still This one seems to have taken a condescending attitude to your real problems. I would think about talking to PALS at the hospital. I did so once, and they managed to sort out my issue in a way which managed not to upset anyone. Which was good.

Milkfairy profile image
MilkfairyHeart Star in reply to richard_jw

Microvascular angina tends to effect women more than men .There is an acknowledged bias in Cardiology regarding women.

Just because MVA is difficult and expensive to diagnose is suggesting that the quality of life of people mainly women living with this condition along with appropriate treatment is not necessary.

This bias and prejudice is faced by too many women who are continually told they have a mental health problem not angina.

Microvascular dysfunction and vasospastic angina increases an individual's risk of heart attack, stroke and heart failure.

They are not trivial conditions to live with. They can also lead to debilitating episodes of angina.

I spent 9 days in hospital on IV GTN and morphine when my vasospasms became more severe in March.

Microvascular dysfunction can be diagnosed during a routine angiogram by using a guide wire and adenosine. Vasomotion disorders using acetylcholine.

I have lived with coronary vasospasms for 9 years, microvascular and vasospastic angina and with the greatest respect, I have encountered inappropriate behaviour and attitudes from Cardiologists before Covid.

Please do not defend the unprofessional behaviour of the Cardiologists.

All healthcare professionals are also expected to keep their knowledge base up to date.

The Lancet Women and Cardiovascular Disease Commission report published in May, highlighted the issue of the disparity of care for women heart patients.

It includes the problem of the lack of knowledge and awareness of microvascular dysfunction and vasospastic angina amongst Cardiologists and Healthcare professionals alike.

thelancet.com/journals/lanc...

richard_jw profile image
richard_jw in reply to Milkfairy

I'm not saying that these conditions are trivial. The guy who did my angiogram thinks that I have it. I am saying that it's surely better to take a non confrontational approach to the doctor who has treated you quite possibly via an intermediary like PALS who I have found can defuse these situations and achieve a good outcome

Milkfairy profile image
MilkfairyHeart Star in reply to richard_jw

You could ask your Cardiologist why they didn't carry out the appropriate tests during your angiogram to assess the function of your small vessels.

A definitive diagnosis of Microvascular dysfunction is important as it helps with the possible treatment stratergies.

Have a look at this website, it has lots of information that may help you understand the conditions better.

internationalheartspasmsall...

PALS isn't always good at managing complaints.

Even the Parliamentary Healthservice Ombudsman report summarises the problems and poor response made by many Trusts.

ombudsman.org.uk/publicatio...

Mallowme profile image
Mallowme in reply to Milkfairy

I’m someone who needs to understand my condition to manage it. That’s why I wanted the diagnosis. I can’t get to grips with all the conflicting stuff. BHF say one thing doctors another I’m left playing guessing games. That websites is really good.

Thanks Milkfairy, you’re definitely a ‘heart star’. Xx

Mallowme profile image
Mallowme in reply to richard_jw

I understand that and if he’d said that to be honest it could be MVA but that they are unlikely to try and confirm diagnosis because of backlogs etc, but that they would still try to work with me to get the meds a little better so I can manage more I’d have understood. Unfortunately instead he was dismissive and seemed to feel I liked taking meds with horrible side effects and that I maybe didn’t need them, but just fell short of taking me off them. I couldn’t make him understand that I’ve already tried several times to come off them and ended up unable to walk up the stairs without chest pain as well as attacks at rest. PALS have helped before but I think I will try my doctor first for a new referral. It may take a long time but at least it will be something.

Thank you anyway.

Unbelievable! I’m not diabetic, neither am I severely overweight. I was told my problems were gastric until I proved otherwise. You really shouldn’t have to fight for proper care and follow up. Or be left on drugs saying oh well if they work. Been there.

My advice write a carefully penned letter requesting a follow up. Detailing what you’ve been told and asking for a second opinion. Send it to your GP as that will go on your record. And to PALS at the hospital.

Hope that helps and good luck x

Mallowme profile image
Mallowme in reply to SloopyLJ

Yes a letter sounds good. Easier and clearer than getting upset and tongue tied trying to explain on the phone. Xx

Those of us around the microvascular dysfunction community have all heard stories of terrible care but this takes the biscuit. If you are on Facebook there is a private support group called Microvascular Angina, Coronary Artery Spasm (Vasospastic Angina) and CMVD Community. The administrators are compiling a list of specialists who members have found supportive and helpful. It covers the UK and other countries.

Milkfairy profile image
MilkfairyHeart Star in reply to dunestar

There are also 2 other much larger and longer established Facebook groups who jointly created a website and advocacy group recently. They have over 25 world leading Cardiologists supporting them.

They were included in the Lancet Women and Cardiovascular Disease Commission's website.

womencvdcommission.org/

internationalheartspasmsall...

It is good to see that there are several support groups advocating for this group of patients.

BronteM profile image
BronteM in reply to Milkfairy

Was it you, milkfairy, who recommended the book ‘A Woman's heart’ by Dr Angela Maas? I’ve got it on my kindle and found it really useful reading.

Milkfairy profile image
MilkfairyHeart Star in reply to BronteM

Both Lettingofsteam and I recommended reading Prof Angela Maas' book.

It is such a good read I agree!

Angela Maas is a co author of the Lancet Women and Cardiovascular Disease Commission.

Mallowme profile image
Mallowme in reply to dunestar

Sadly I’m not on Fb but thank you. Xx

It sounds as if the doctor is telling you "if you don't have the symptoms, you are not suffering from it, so what's the point in looking into something that bothered you last year?" For a doctor, that is a very simplistic way of looking at a patient. You need to find one that isn't too busy to be bothered.☺️

He’s dismissing the fact that the meds are relieving the symptoms. The symptoms still come and go just not as bad.

not very intelligent for a doctor, then.

I'm literally sitting here with my mouth hanging o pen in shock. I then read Milkfairy's response. She's the expert on microvascular angina and has said all that needs to be said. Get that complaint sent in and follow her advice.

Mallowme profile image
Mallowme in reply to Qualipop

Thank you. I’m not sure I’ll formally complain. I’ll see how I fare with the gp first. Definitely getting a new referral though.

Dear Mallowme,

You 'Rant' away, all you want! How DARE 'they' treat you like this.....

I'm unclear if you 'Consultation' was actually with one of 'Your Doctors', or 'Just' Someone asked to Review you. If the Former, then you need to INSIST on seeing him/her, and having the Full Range of Tests. However if, as I strongly suspect, you were being 'Reviewed' by a Junior, Alternative Doctor or 'Other Person' NOT Familiar with your Case.....This 'Happens', quite enough, in Normal times- let alone in a Pandemic!

See if you can, at least Speak, to your Own Consultant- explain what has 'happened' and just- politely and 'nicely' ('Nicely, heck Andrew...) ask for Him/ Her to give you a Review.

Please do Feel Free to 'Let Off Steam', over any issue- it's what we are Here For babe.

Hope this is soon 'Sorted Out', for you, Mallowme.

AndrewT

Mallowme profile image
Mallowme in reply to AndrewT

Pretty certain he was a minion. I was surprised with his lack of knowledge when he said he’d been working in the department for 10 years. Maybe that’s the problem. Not forward thinking. Xx

AndrewT profile image
AndrewT in reply to Mallowme

I'm going to P(rivate) M(essage) you Mallowme I have a few, if you like, 'Observations' to share.

AndrewT

I am so sorry you are having these problems, it has taken me the best part of 5/6 years to get a diagnosis, finally had an angiogram in December of 2020. I was really beginning to think it was all in my head, I have seen 2 cardiologists the 2nd being wonderful, talked to him on Wednesday this week and he was so reassuring and explained that yes indeed I was having spasms despite what I was thinking, I put a post on yesterday explaining some of my journey. I hope this makes sense, please try and stay as strong as you can, despite all the obstructions hopefully you will win out in the end, good luck

Mallowme profile image
Mallowme in reply to notter56

Ooh only about 3 years to go then….. seriously I’m realising they’re not all bad. The second of the four phone calls I had the registrar was great and I thought I was making progress, unfortunately it’s been down hill ever since.

Thankyou. X

Wow! Thank you everyone for the lovely positive messages.Sorry if I don’t reply personally to all the messages but I really appreciate the sound advice and realise I must do something, just because the meds help I still don’t feel stable.

Driving today I had to stop the car to manage an ‘attack’ or whatever it was. I’ve never spoken to a consultant, I’ve had 4 calls in 15 months and never the same person. Only one had any understanding and tried to help. I don’t even think I have another appointment scheduled.

I’ll post if I get anywhere.

Thank you hearties. Xx

Being female can be a deciding factor. 🤬. Just become an accomplished pain in the a***. Xx

Mallowme profile image
Mallowme in reply to CripLady

I’m happy to try if it works. Haha. Xx

CripLady profile image
CripLady in reply to Mallowme

Take care x

Sorry you had this bad experience. It's awful and demoralising when we are not taken seriously.

You can be referred to the NHS doctor / consultant of your choice. Here's a link to the website NHS choices, which explains this.

I hope you will find medical care that is respectful and effective.

nhs.uk/using-the-nhs/about-...

Thank you. I’m battling on. Xx

An update. I have eventually spoke to PALS as couldn’t even get to speak to a gp and am having some medication issues on top of everything else. While I was waiting for a reply I received the letter of the conversation I had with the registrar, he missed out most of what was said and confirmed he didn’t think he could help any further and wished me well.

Weirdly at the top ‘vasospastic angina’ was cited as a diagnosis??

Now I’m even more confused as later in the letter he says no confirmed diagnosis as it’s so difficult.

Pals seem to have made it a complaint as is couple of days later had a phone call with the cardiac nursing manager.

She seemed to listen and I thought she understood all my concerns including the one whether I should immediately stop the medication (and what would I take instead) due to the side effects as stated in the leaflet and said she would be in touch after speaking to the consultant. ….

That was six days ago…..

Milkfairy profile image
MilkfairyHeart Star in reply to Mallowme

Ummmmm😠 🤯🙄

If a registrar thinks it's okay to discharge a patient with possible vasospastic or microvascular angina that is a big problem!

I suggest you contact PALS again.

I would ask for a formal diagnosis and send in the links from the BHF information on Vasospastic and Microvascular angina along with the link to this support group.

It includes all the latest research and there is an impressive list of Cardiologists supporting the group

Oh and throw in the Lancet Women and Cardiovascular disease Commission report published in May which lists Ischaemia non obstructive coronary arteries INOCA aka as Microvascular dysfunction and vasospastic angina as a possible cause of premature death in women heart patients.

internationalheartspasmsall...

thelancet.com/commissions/w...

Mallowme profile image
Mallowme in reply to Milkfairy

Thanks Milkfairy. I thought the nursing manager was ringing me back. I realise now I was being fobbed off.

Trouble is I’m so tired of battling them all. It’s bad enough I’m made to feel rubbish without being made to feel like I’m being a nuisance too.

I even told the nursing manager I was prepared to pay to get a diagnosis but I just keep being ignored.

I’m still trying to work and live some sort of ‘normal’ life in-spite of everything and it’s all so exhausting.

It sounds terrible but a heart attack would be easier. At least they acknowledge that.

Sorry. A bad day. Xx

Milkfairy profile image
MilkfairyHeart Star in reply to Mallowme

I had to battle for my diagnosis as well.

I have had some terrible experiences. It takes it toll.

Sometimes you have to withdraw and regroup.

You are absolutely not a nuisance. It is more about the lack of knowledge and awareness of the condition amongst the Cardiologists and Cardiac nurses.

You’re right. I have to keep reminding myself it’s not ‘personal’ . Thank you for your kind words. Xx

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