Further to my post of a few days ago I have discovered some essential gender differences between men and women that I think all women considering treatments for AF, especially ablation should be aware of and ask their doctors about.
Firstly there appears to be some structural differences within the heart which may make ablation less successful for women than for men - thanks to a post from Finvola
Secondly that women tend to be more symptomatic and be less likely to be offered a cardioversion than men - BMJ study
Thirdly - that women are more likely to have an autoimmune response following treatment for 2 known reasons I have been able to ascertain - women have a stronger immune system than men which protects them from infections but which means they are much more likely to develop autoimmune responses such as RA or Lupus or in my case Mg. Testosterone protects men from the overreaction but makes them more susceptible to infection. Women also have a higher level of an epigenetic master regular called VGLL3 which switches on the immune system causing the body to attack itself.
My immune system has been trying to kill me for 50 odd years so I wonder what would kick off if I did have an ablation ! Do you think Cardios/Eps have any idea about this potential AI issue ?
Oddly I've had 3 of my Consultants tell me that my various health problems are probably because I have autoimmune issues, not sure how true that is !
I'm seeing the EP in Nov and ablation is one of the options but I really don't like the idea and even less now as I don't want anymore problems 😞
Which is exactly why I posted and as you say, food for thought and questions to ask. I just wish I had had this information 5 years ago. It seems from Kaz’s post that her EP was aware and took precautions for her second ablation - but only after severe reactions to her first.
I know that female hearts are different to male because a few years ago when I was trialling a new portable ECG device during Heart Rhythm Week at two local surgeries I had to tell it if the subject was male or female or it would give false results. I really do not know the fine details but female ECGs are slightly different to male apparently. All I can say is that female ones were much smaller on the print out.
Well, well....that is fascinating. Given that Ablation treatment for women is more complicated for the physical reasons outlined, that makes it doubly important that our EP should be highly experienced. We need to know, and ask outright, how many ablations they perform. What is an acceptable figure? What is an inoffensive way to ask? I just came straight out with the question and the EP was definitely OK with it. Quite proud of his record it seemed. But just the fact of asking seemed to alter the tone of the meeting. It showed I had done some research I guess.
And delay in diagnosis/referral for women is at Primary Care level. On reading this it now strikes me as possible I was not treated promptly by my previous GP - for 4 years in fact I was told not to worry and that the AF was not dangerous. The former GP didn't do an ECG. Only did I get a referral when I had a bout of AF in the run up to breast cancer surgery in 2010 to confirm I could have the GA. Certainly the presence of cancer puts a bomb behind people. I was given Verapamil as a PIP. Even then nothing much happened till I had persistent AF which we all know is harder to treat. That was 10 years after my first AF attack.
Would a man have been referred earlier? I now think that could be possible. We have to be persistent and perhaps firmer with our GPs (good luck with that...! 😟)
I spent ten years being told I had stomach issues including two endoscopies. I had complained I had a fluttery feeling in my abdomen. It was only moving house and GP in 2004 that it was finally diagnosed and probably only because the mother of my new GP had AF and she understood it.
So we had a similar experience...but I knew it was my heart not my stomach from the word go because I took my pulse. There was still no referral. Would you say Drs' awareness of AF has improved over the last few years?
Well, that is interesting. Too late for me, but interesting. I had my ablation a year ago. So far, no adverse reaction. I will discuss with my EP at the next visit.
My EP said it’s generally younger women (35-60) that are more prone to an autoimmune response after an ablation. Of course it doesn’t affect everyone but he said this is the age range generally when women develop autoimmune diseases.
Really interesting thanks for posting. I’m 39 and already have auto immune issues which started after the birth of my third child. I had a meeting with my EP recently to discuss my AF which began at Christmas. He is very keen for me to have ablation surgery. I am more cautious. I know from prior surgeries (c-section for 4th child, hand surgery, a d&c after a miscarriage) that I had major inflammations and very high CRPs and was very unwell. I am wary of any surgery. I’m still having Af episodes tho which the medication isn’t controlling. Had two episode in the last two days after not having any for a month. Disheartened and tired but keen to avoid surgery... :(. Perhaps it’s worth tinkering with different beta blockers all I have tried so far are different strengths of bisoprolol.
I feel great now after my last ablation. I had been on numerous drugs but nothing controlled the AF. I wouldn’t be worried about having an ablation but be prepared for a potential autoimmune reaction and let the EP know because of your history you are wary. I’d ensure too that you focus on an anti inflammatory diet.
I was very interested in this topic a few years back when I found the articles in the post you linked. I did query the subject with two cardiologists at the time but neither had any info, other than physical size and space for the EP to work in being less in the average female.
Great that you have unearthed more information - I look forward to read the threads and following links.
Very interesting. I have had all this for over 20 years now. About 12 years ago My ep notified my cardiologist that there were shadows in my lungs which transpired was reactive Lupus. But propafenone was the cause. It cleared from my lungs when swapped to different meds.
I have fibromyalgia which I believe is caused by over reacting immune system. So get weird pain in lots of places. Now needing more ep work. (3 ablations already plus pacemaker). Dreading it as last lot put my back into spasm.
Also need new pacemaker but know I will be bad after for months. But whats the alternative.
Just soldiering on. Being grateful I am still here at 67. My poor bro succumbed at 64.
Thank you for your reply, I can so relate to your struggles as I suffer with several autoimmune conditions + AF and have several friends with fibromyalgia with CF. I avoid GA’s and sedation now as they are the biggest antagonist for me. It is so difficult managing everything.
Very good information. I cancelled my ablation a few weeks ago so this really was more affirmation that Ive done the right thing. I also have RA. This sucks!
I definitely think women who present with , what we now know are AF symptoms , are treated with some scepticism ! Hopefully this is less now than it was , but, I am not sure.
For years I was patted on the head and told” it is just your little heart”.
Being divorced, single parent , artist etc I was stuck in a box, labelled. In those days they just filed out valium.
It was only when my father died suddenly in my house aged 69, one impossibly snowy Boxing Day , that I was devastated and then angry.
I had called in a locum the night before but he had not really taken my father’s symptoms seriously.
This loss galvanised me , even my mother , a hard woman, dismissed my heart fears as the result of “ sinning!!! “.
So, with some money I had been left, I went privately to see a cardiologist. I was accompanied by my son who, strangely , then worked for the European Heart Foundation.
It was lucky that I went a found a good and clear thinking cardiologist! He listened to me!!
A few months later I was in hospital having Mitral valve repair.
All was good till ,eight years later following a bad flu,I developed what I now know is A F. Again I was treated as if I was just overreacting .
Like many in the AF club I was in and out of A and E . Again I felt I was being labelled as having panic attacks. It was so humiliating. Often it was the women doctors who were the harshest. A vile few years !
Again I went privately , I saw Kanagaratnam, he confirmed AF.
I was pathetically delighted by this.
Two ablations did not work but at least now I was being treated carefully and, listened to. Things have moved on since those eight years ago.
With this forum promoting AF awareness , I , for one have benefited hugely!!!!!
I know it is a continuing battle for good treatment, many factors make this difficult.
Leaving our present mad national situation out of it,
We AF “clients “ need GP s who listen and are accepting that AF exists. We need GPS who are not too much in awe of Cardiologists.
We need luck to be in an area that has an EP!
And, we need a nationwide Utopia that that does not Charge for entry.
Your experiences mirror the stories of many, mostly untold. I do think things are changing and I would say that GP training now in listening to the patient has vastly improved but lack of knowledge of AF by GPs is sadly still inadequate - as indeed the Patient’s Day highlighted. Thank goodness for this forum.
I wrote a long reply to you and to my fury it has just vanished??
It must be lurking somewhere. It was about the sudden plague of Fybromyalgia and Polymyalgia . I have been diagnosed by a rheumatologist as having Polymyalgia. I have often posted about joint pain since changing to Rivaraxaban.
My GP has refused to commentl and on the rheumatologist’s diagnosis.
I am very perplexed. Also the letter from the rheumatologist statede nor did he last that my pulse was normal and that I had no heart murmur.
As I have had Mitral valve repair and am in persistent AF I am even more perplexed.
He certainly never took my pulse nor did he listen to my heart.
That sounds terrible. Not nearly enough research into RA, Fibromyalgia & Polymyalgia - I have several friends with one, other & in one case - all 3. Their lives are miserable, 2 unable to work & the 3rd struggling with side effects of steroids. There has to be a link somewhere but until there is empirical evidence it’s like shouting in a sound proofed room.
The STARS conference of last year was the first time I heard Doctors say that Autoimmune/Autonomic Dysfunction/PoTS/Arrythmias were linked - but they have no idea how.
Why are these specialists so unwilling to think outside the box.
I asked my cardiologist if he thought the heart drugs were causing joint pain and he asked “ do you think I am responsible for the side effect of drugs”!!!!
I asked my rheumatologist if he had any patients with Polymyalgia and... AF.
He just ignored my question , but, he was embarrassed and had obviously not read my notes and seen all the heart problems I have.
Both specialists are private and charging obscene amounts of money.. private does not guarantee skill it does mainly guarantee speed of being seen.
I will be very interested to hear of any more information about the link between AF and break down of immune system.
Hi Lulu - Unfortunately specialists are just that - they specialise in one subject and no doctor can know everything. I am lucky in that my EP and my Neurologist actually have offices on the same corridor - so they speak to each other occasionally and because so I cannot have so many drugs - my neurologist makes sure my EP knows this.
I’ve been looking at this for years and the ONLY people who are connecting the dots are the very excellent doctors who spoke at STARS seminar at the AA Patient Day. Doctors will not tell you anything, even if they know or at least suspect something, until there is proven evidence. If they did they leave themselves open to be sued and I can understand that, however, too many are just too risk adverse to help patients so say nothing.
We patients know it but the doctors need time to catch up!
They have no idea how or why - but there are a few working on it.
If you look at how a Lifestyle Medicine Doctor works - different story - I am lucky enough to work with one who is also a Consultant Rheumatologist - they will be much more understanding but also much, much more thorough as an initial consultation will be 2 hours and you will have already have filled in about 5 lengthy forms detailing your family medical history to grandparents, life experiences, symptoms - even minor one - sleep - nutrition - stress - ALL of which impact on our bodies and our Microbiome - which is really in charge!
Any invasive procedure WILL disrupt the Microbiome - and very recent research which is still not anywhere near mainstream - indicates that the signals these microbes send out are what disrupts our immune system so mess with them or their balance at your peril!
Many drugs, especially antibiotics will also mess up your Microbiome as they will kill the good bugs as well as the bad so some doctors are now suggesting very low level antibiotics for certain conditions were the bad bugs are not controlled. Use strong antibiotics and you kill everything - which is when the immune system goes into overdrive. Hospitals are so keen to avoid Superdrug infections, rightly so, that everything else which is helpful to us also gets destroyed.
And that is only one factor - there are many others so it is a very complex area but
- Auto-immune, Autonomic Dysfunction and Arrythmias are being linked but very early doors.
I have had - Ulcerative Colitis, PoTS, Low BP, Hypermobilty (mild EDS), AF with AFl and Myasthenia and CFS. Currently Myasthenia & CFS are the most symptomatic and problematic but any flare is always accompanied by inflammatory response which I know as my eyes go red and itchy and sore and I then know I need to rest - A LOT, pay huge attention to my eating plan with plenty of anti-inflammatory foods - I also take Astraglus and do lots of daily stress management - Mindfulness & Meditation, ensure I get 7 hours good quality sleep and keep a positive attitude.
Dr Nick Gall of London is one of specialist working with this but I wish I had been able to listen to this
Dysautonomia - how does this differ from PoTS - Dr Robert Sheldon, Electrophysiologist - Calgary CA
Wow CDreamer what a response! Thank you ! I will recreate it tonight, itchy eye thing is very interesting too! As to having enough sleep ????? Impossible, Ever since taking Flecanide ( no longer do , digoxin instead) I have not slept through the night. It is a horrible pattern. Now on steroids for polymyalgia I wake at 2 or 3 or 4. Just lie there worrying.
I have multiple autoimmune syndrome and PAF, I'm under Gastro, Gynae and Cardio and they all say the cause of all my health problems is either autoimmune or microvascular 😕
Great post. Thank you. It’s adds to my intuitive feeling and my knowledge so far... why I don’t want an ablation. I had Graves’ disease (hyperthyroidism) treated with radioactive iodine. (Another dreadful ordeal) My 5 sisters all have autoimmune diseases. So do my nieces.
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