AF and a Gender Difference ??: I wonder if... - AF Association

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AF and a Gender Difference ??

I wonder if anyone has any experience or knows of any research that looks at the differences between diagnosis, treatment and how males/females have been affected by AF?

Do women generally experience AF differently?

Are they not taken as seriously as men by the medical profession?

Does anxiety play a bigger role in women than in men and is that maybe because they feel they are not taken seriously?

Before i get inundated with indignant men - I also know and respect that men suffer just as badly from anxiety as women but that is not what I am asking.

I have seen and talked to many women dismissed as ‘over sensitive’, ‘over- reactive’, hysterical’ or ‘over anxious’ and not given tests for heart disease simply because they are women and didn’t ‘fit’ the ‘criteria’ written for a specific condition however - recent research on CVD has shown that women often present with entirely different symptoms to men and as all the research and treatments were based on a male experience, many more women died from CVD than should have done because they experienced different symptoms or treatments which worked for men, didn’t for women.

I ask because I note that over the years some of our male sufferers seem to be much more ‘fact’ based and that some of our female members have subsequently felt quite dismissed by some comments and have left the forum because of it so I believe there maybe a blind gender bias out there and if it happens on such a helpful, open forum as this where the majority of people are well meaning and wanting to support others yet still causing offence, then it must be happening everywhere.

If you are a woman who has felt dismissed on this forum or by the medics in any way I would be very interested in hearing your experience. Do you think gender perception plays a role and if so what has led you to believe this?

I know Bob has mentioned this in passing before and said that he thought that women tend to put their ‘face’ on, dress up before going tot he doctor so therefore look well whereas men may not. Could that be a factor in how AF is regarded?

I was very struck by a lady who posted on another thread recently who had family to look after so just felt she had to ‘get on with it’ as she prioritised their welfare over her own - a trait again more associated with the female of the species.

I would be very interested in your thoughts which I hope will be kind and respectful of the genuine and serious nature of this enquiry.

Best wishes - CD.

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This is one article from the BMJ on gender and AF

heart.bmj.com/content/103/1...

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Hi CD,

In my case I had excellent treatment at the BRI Heart Insitute once I presented my GP with some research on ablation.

My PAF was triggered (I am convinced) by hormone changes, now 75 and been on HRT for many years since gynae ops 40 years ago.

Now worried that if my supply is compromised my PAF will rear its head again!

All the best

Jackie

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Gosh you are lucky, certainly not our experience from there !

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Hi Bantam, sorry to hear you had s bad experience at BRI. My treatment/ cryo was 12 years ago so perhaps the dept is rather busier now. Havent been there for a few years luckily.

Jackie

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I'm not the only one to have problems there, hopefully you can continue to stay away !

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It's already known that women are treated differently to men, we frequently aren't taken seriously or treated !! everything is automatically put down to anxiety, menopause, stress and all the other reasons to send us packing !

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Medically I have not noticed any difference to those of men of my acquaintence .Out there on the street it is quite different with all the gratuitus overfamiliaritity and patronising behaviour older women experience which is intended to remind us of our place.

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My husband and I both have thyroid and heart problems and we see first hand the diffence in how we are treated, he sees the GP or Consultant and the necessary tests or treatments happen, I have to go back time and time again and still little is done. Regards to thyroid treatment he is taking a far superior replacement med yet the GP refuses to prescribe it for me 😡

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Are your thyroid profiles similar? If so there is no reason why your should get inferior treatment. If your GP will not prescribe what you need you may have to get in touch with your local medical council and take it up with them.

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We both have hypothyroidism and the treatment needed is the same, it's a long story and involves millions of people being denied the treatment they need. GP's can prescribe this particular tablet if a Consultant has recommended it, GP overruled my Consultant and will not budge and the CCG will refuse as well. All down to cost as it's very expensive.

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Are you refering to Liothyronine?

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Yep, the whole situation is dreadful.

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That sounds very worrying Bantam. It seems odd that you are denied whilst your husband is treated.

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Well, if it is about Liothyronine then that is probably an area decision. I was prescribed it by a private doc. who recommended it to me and then I had to speak to my GP about supplying it.he was okay a few years ago about it but is bucking up a bit now on account of needing to watch his budget.

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My husband is still prescribed Lio on nhs and it won't ever be taken away from him as they know he needs it, just so wrong that they are happy for him to take it but denied me the chance to even try it.

Im seeing his Endo next month about possible adrenal issues so I might just ask him !

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That is a golden oportunity! Do not miss it.My private doc. told me I had enough thyroxine in my body but it was not reaching the cells.So the Lio. did/does that job and 'pushes' the thyroxine into the cells.Bingo .Within weeks I felt like a new woman and am still pretty perky .On account of the Afib. I take only a small dose of Lio. but it is enough to do the job.

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Thanks I'll do my best but even if he did recommend Lio I have my doubts the GP would prescribe, they have said so many times they "do not prescribe T3" hmmmm they look a bit flummoxed when I say "yes you do" !!

I really think my heart issues might improve if I had a bit of T3 especially as my T3 level has dropped recently and symptoms are worse, just wish the docs would understand 🙄

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Oh CD don’t get me started on gender perception!! Yes I have certainly experienced this from the medical profession particularly in getting the AF diagnosis and then when I questioned some of the treatment. Then, as a woman working In IT, from my time as a mature student returning to Uni, having to deal with frankly offensive remarks from a tutor who thought I should be at home baking a cake, then later in my career dealing with the many bright, dismissive young men who could talk a good act but actually knew very little. I think over the years I developed ways of dealing with these people, it just took me a while to realise I needed to apply same to members of the medical profession!!

I can say however that I have never felt dismissed or belittled by any comments on this forum- on the contrary I have received a lot of sound and compassionate advice. I think part of the problem lies with the nature of any online communication- you can’t see the person as they ‘talk’ to you, so you may interpret a meaning from the message that isn’t intended by the sender. An attempt at lightness may seem insensitive to the receiver of the message. Those of us who like to deal in facts - and I’m not inferring any gender bias here - may come across as brusque maybe uncaring.

I guess we all need to think about how our comments will be perceived when posting on the forum?

See also the book Invisible Women by Caroline Perez - lots of examples of the gender bias!!

Interesting thread

Liz

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Hi CDreamer, I remember feeling dismissed so very well by a young out of hours GP when I first presented with a heart episode. He checked me over & told me there was nothing wrong with my heart but if ‘I wanted’ he would do an ECG. He chewed gum throughout the consultation & I felt like an irritation. After the ECG was normal he said ‘see I told you there was nothing wrong with you, now go home & deal with your stress’.

After such a terrifying event I was devastated by his manner

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That sounds terrible and that doctor lacked empathy and compassion. AF is so difficult to diagnose when it comes and goes and that seems to only aggravate the worry. It would certainly put me off from seeking help a second time.

So how did you cope? What helped and what hindered?

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Exactly, it does nothing for your confidence which is low anyway with the frightening episodes & not having a clue what was going on.

All my episodes over about 5yrs were too short to get from A-B so my anxiety continued to mount & quite honestly I wasn’t coping at all.

It took months to get a cardiology appointment & then I was told I would have a review after 4 months following a 3day monitor but guess what that cardiologist left & I was told all his patients just got left for months again before being put with a new cardiologist.

I think it was 14 months between being referred & getting seen by the new consultant. It was a total farce.

I had a course of CBT & found this forum which has helped enormously to settle my anxiety. I’ve never experienced a more anxiety provoking condition than AF in the whole of my life.

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That is a very distressing tale. I am glad the forum here has helped.

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I would like to thank you CDreamer for all the helpfulness you contribute to the forum with regards to the anxiety side of AF

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I could write an essay but I'll spare you 😀 Just a couple of thoughts I've had - as well as many men having been conditioned to think of women as quite different (and sometimes intellectually and emotionally inferior) to men, there is also the problem of how women have been conditioned. I don't want to relate my history but I have realised that I have been conditioned by my early life. Although I was brought up to be stoic, factual and unfortunately not very empathetic I was also trained to be submissive to people in authority, particularly men. So faced with the doctor I have tended to be charming and submissive and frankly dumb blondy rather than neutrally factual and assertive. This was all subconscious of course until lots of (humiliating) incidents led me to question my behaviour. Now I make a conscious effort to come across as sensible and informed and it usually works well.

The other thought is that women are perceived as being quick to consult the doctor with any health problems whereas men are perceived as being reluctant to do so. So a doctor may think it is ok to fob a woman off with as little treatment as possible because she'll be back but with a man this may be the only chance and he wouldn't be here if he wasn't really concerned.

I'm adding a third one which came to me as I was checking what I'd written - women do tend to be more empathetic (and again I think that is more down to circumstance than nature) so their advice is often more acceptable than the sympathetic but often prescriptive advice from men (ditto).

Must be off to do some 'women's' work 😀

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Oh I SO agree Buffafly! I was also brought up with very mixed messages from a single father - basically it was be Independant so you don’t bother me but when you marry you must give up your job and ‘obey’ your husband. Unfortunately I therefore chose someone with similar views to my father - that didn’t end well!

I do think times have changed and thankfully those attitudes, but there are the essential, generalised gender differences which you describe which seem to be inherent rather than cultural conditioning which remain.

Thank so much for your thoughtful reply.

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Great comments, Buffafly - I so agree!

I see that in myself. And I’m also very apologetic to doctors. (And to anyone in authority, but especially I see it in myself with medics as i see so many of them.) I’m apologetic - and I believe this makes some doctors downgrade my issue. Then I get emotional rather than factual. Then they dismiss me further. Then I go out thinking ‘how did that happen?’ I know that’s not a female trait as such (and I have many assertive female friends!) but I believe more females than males have been conditioned somehow to be apologetic and passive. And male medics can often respond by reassuring rather than investigating.

Finvola once said something on here that has stuck with me (I’m sure others if you have said it too, but you know how someone’s nugget of wisdom sometimes just comes at the right time?) - She said to talk to the dr about the impact on your life, the effects, the restrictions. Concrete things. Not vague or dismissible things. That has helped me. But I find it hard!

Interestingly, as soon as I have something indisputably concrete - like sitting in front of them in very fast AF - I have never had a moment’s dismissing. (Even though I’m still apologetic!! 😁)

Great post CDreamer, thank you 😊❤️

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Jane - this is exactly what I am getting at - thank you so much for posting because I do think it is a dynamic we co-create and one that we as older women need to learn to manage better.

I learned quite early on that if I wear bright clothes - I am less likely to be overlooked in a waiting room. It sounds silly but I am a people watcher so I studied the reactions to appearances and the responses to the people by staff and noticed a big difference. Dress beige/grey and you are often overlooked and become invisible.

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Wow that’s a shocker for someone who likes to live in monochrome and who feels adventurous in purpley-grey 😁

Joking aside though, that’s really made me think. Since being unwell (not the AF but other stuff) and seeing myself physically ageing before my time (I’m ‘only’ 50) I’ve increasingly been happy to be inconspicuous, keeping in the background. But what I’m projecting will indeed have an affect on how people see me and treat me. And on my own expectations too...

I may have to rethink embracing the invisibility! :)

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Hi CD

Here’s a post I wrote last year on gender differences from a physical perspective:

healthunlocked.com/afassoci...

Personally I have never felt gender was an issue with my medical care. I know though that I’m quite assertive, I research everything thoroughly and I ask a lot of questions. In a recent conversation with my EP he said he has a number of CEOs and elite athletes as patients and I have a similar mindset and approach. He never mentioned gender but I had a clear picture in my mind that the CEOs and athletes were predominantly male. I’ve done a lot of work over the years around gender differences and unconscious bias and I know a lot of women do have a different experience to me.

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Thanks Katz - I missed that post of your and that was very helpful for me and I wish I had been alerted to that difference as I developed a very disabling autoimmune disease immediately after my 2nd ablation - that is the sort of information I was looking for, not always gender bias. I have experienced medical gender bias and it was a very unpleasant experience. It was many years ago now but basically I was labelled hysterical and over reactive and again, it was around autoimmune disease.

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I know a lot of female relatives and friends with autoimmune disease who have experienced similar things- “bloody hysterical women” 😃. Glad my old post helped.

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Kaz - this is far more than gender bias - this is actual hard evidence which I was unaware of and I think women should be alerted to, especially anyone with any pre-existing autoimmune condition. May I ask what extra meds were you taking as preventative?

Testosterone means that men get more infections but protects them from an overactive immune response, however, that looks as though it is only half the story as there seems to be a second factor - an epigenetic master regulator called VGLL3 which women have more of than men.

labblog.uofmhealth.org/lab-...

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That’s a very interesting read - thanks. I wasn’t taking anything prior as I didn’t know I’d have that kind of reaction. Once I was diagnosed with the pericarditis and gastritis I was put on Colchicine and Prednisolone for a few days to help get the inflammation under control.

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Anti-inflammatory and immune suppressants - but only after the response so maybe if we are more aware we may ask different questions.

Thanks Kaz - hope you are keeping well now.

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I’m better than I have been in a very long time :)

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No, I don't think I've ever experienced any bias medically through being female. Saying that I must add that both myself and several friends now prefer to see female GP's as we feel that they are more understanding and will discuss our concerns in more depth than a male GP would. I don't see that as gender discrimination just the difference between males and females. Women are far more open than men. I once read that men like to sit and think quietly about a problem, but we women like to solve them through discussion.

You ask: Do women generally experience AF differently? I would say that no they don't, they just find it easier to talk about their symptoms.

I wonder if men see discussing their ailments as a form of weakness and for that reason hesitate to consult their GP. I've known men like that. So when they are reluctantly pushed to make a rare visit to a GP (they prefer male ones) they are taken more seriously. Just thoughts really.

Jean

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Have you seen today's news - two ads banned for gender stereotyping - yay 😀

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I suspect there may in some cases be a gender bias, but I can't honestly say I have experienced it in my treatment. In other walks of life YES certainly! Only once on this forum, but I suspect that was a well meant attempt at humour and it didn't bother me.

My husband was treated for SVT more quickly than I was for AF, but that was because I had researched everything throughout my treatment and bought a Kardia Alivecor - that meant he could record his episodes and he could take them to the GP and consultant without waiting to capture them (or not!) on a Holter monitor.

My husband is just as distressed by his episodes as I am with mine, though he does seem outwardly calm. I think we both go rather quiet although inwardly we are in turmoil. We both feel similar symptoms.

But I will continue to think about this and may return!

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Thanks for you post - I wasn’t only looking at gender bias but also gender difference in diagnosis and treatments - I’ve just put up another post with my findings which I think women and their doctors should be aware of and take into account when considering treatments.

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Only things I am aware of is the stroke risk/Chad vascular score (which I still dont fully understand) , men traditionally go to the doctors later than women so maybe that's a factor, I had it from at least 2015 but never went or got diagnosed until 2017 just put it down to stress ! Not aware if there are any differences in the heart apart from size, I know the measurements for a normal atria are different for men and women ! All that said i would put any differences down to more personality/world view than gender ! I strongly believe that western lifestyle, alienation and disconnect from what really matters causes alot of illness including AF and a host of of other conditions ! Interesting question though !

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Hi

Another member posted on this same subject about two weeks ago and they included the following links to articles that made interesting reading –

today.com/health/dismissed-...

nytimes.com/2018/05/03/well...

huffpost.com/entry/doctors-...

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Thanks for that - unfortunately I missed that post as I was on holiday for a few weeks and out of contact.

Unfortunately your links don’t work so could you give me a link to the original post or the name of the person posting so I can look it up?

Many thanks CD.

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Hi

I am sorry that the links did not work – so trying again (fingers crossed)

nytimes.com/2018/05/03/well...

today.com/health/dismissed-...

huffpost.com/entry/doctors-...

I have just been looking but am unable to locate the original post now. I do recall that the title included ‘on dismissiveness in healthcare’ if that helps.

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Sadly I've experienced very poor and dismissive responses from cardiologists locally, although not so with current EP from more specialist hospital. Minimising of PAF and denial of original consultant diagnosis of type 2 MI triggered by AF which landed me in hospital for 7 days originally (more specialist consultant from different hospital had confirmed it in writing). I've been fobbed off with lies - ie. that losing 10% of my bodyweight would cure me (ignoring the weight gain of more than 10% at the time due to medication and lack of ability to exercise since the onset of PAF), lied to about side effects of meds, and not provided with a treatment plan other than yearly fob off appointments where cardiologist doesn't appear to be aware of my symptoms or at that time how often I had ended up in hospital with it, etc. I have also not been able to get local cardiology to re run tests that they have not been able to complete such as cardio stress tests when they were unable to get a working IV Line into my vein.

Whether at my local hospital men are treated as badly I don't really know - they do appear to be very disorganised, don't keep or cant retrieve notes, etc and appear to minimise everything with everyone I'm aware of, probably to ensure boxes are ticked and they can look better than they are. I do have sympathy for the pressure they are all under as they seem to permanently be in a state of near or partial collapse! I had to rely on a non cardiology consultant to request my GP sent me to an EP as they were concerned about how often I was having to be admitted with PAF.

I am a bit concerned that currently my specialist team nurse(female) appeared not to want to take seriously the difficulties I have had with heart pain, breathlessness and lack of ability to exercise since last ablation (which appears to have knocked the violent PAF attacks on the head for the moment but landed me with multiple ectopics and a frequently racing pulse). Seeming to suggest that it may be me being oversensitive to what my heart is doing, which although possible to some degree does not explain the symptoms or why oversensitivity didn't occur after the 1st ablation where I felt really good after 5 months and coming off bisoprolol for the 10 or so days before PAFG was back again.

Sorry for the massive moan but worried about the state of my health, the state of the NHS and scared at the prospect of being referred back to my local cardiologists in November!!!!

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That doesn’t sound good at all, I can empathise as I have experienced similar delays and disorganisation locally which I believe is a combination of stress on the system and demoralised of staff along with under funding. Our local Trust has recognised this and is supposed to be doing something to remedy it but that will never make up for lack of training and expertise.

Did you read my follow up post where I signposted a study which talks about exactly what you have experienced - women’s hearts are structurally different therefore can experience more complications such as tachycardia, ectopics and arrythmias after ablations?

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Thanks CDreamer - I will follow that study up and hopefully be able to get a better response from local services quoting it!! It does appear that there is generally a wider acceptance now that women and men do differ in symptomology and in reaction to some treatments, as well as there often being major differences between individuals, over a wide range of medical conditions. Hopefully this will eventually lead to new approaches to more personalised healthcare (NHS Funding dependent).

I'm never sure how widespread the acceptance of some of this research is as I'm guessing that we all get trapped inside our own little online bunkers which will magnify some issues and make them appear more mainstream.

I'm so glad this forum exists as it has provided me with the information and support I have needed in this rollercoaster condition of PAF/Arythmias, etc. It helps me retain my 'sanity' and feel able to support others at times who are at an earlier stage of their AF career.

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Specifically about my treatment for AF - no, but then again, I don't personally know anyone else, male or female, who has AF to make a direct comparison.

Generally? On my doctor's records I was classed as an 'anxious type' when I was undergoing investigations for an neuroendocrine tumour and I chased up my GP as the results were taking a long time coming through. Would he have made the same note about a man?

I am another whose upbringing greatly affected my relationships, not only with doctors, but with other women, men, in fact anyone I met. It wasn't until I was in my thirties that I realised I prefaced many of my conversations with an apology. I think my demeanour (and it could be exactly the same for a man) invited a lot of the patronising behaviour I encountered. Becoming a mother brought out the tiger in me and I made the resolution my daughters would be different from me, and they are.

However my biggest handicap is still becoming emotional when discussing certain major issues, mostly to do with health and mental well-being. And on occasion I have felt that doctors (both male and female) have had a gut reaction to that, rather than concentrating on the reason for my visit/consultation.

Really good question.

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