Hello, I got told yesterday that I have the above genetic condition, I am also having all day eptopic beats. I am very very scared of what is causing them. I went to A and E and the GP looked through all my GP notes,. 24 hr ECG results, cholesterol results and did an ECG.
He sad my bottom heart Chambers and top half are not working properly and I probably have micro- cvd
Help, I am out of my mind with worry I have 3 children. I know many of you will be fat worse off than me but I am worried sick.
He advises mh GP to send me to a cardo clinic. This could take months on the nhs.
Should I borrow some money and go private and where to.
Any support is appreciated x
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Starwish
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HelloThis might sound like hard advice to take (and hopefully not the wrong type of advice), but if I was you, I would not make any rash decisions. Go to your local Dr, take the referral to the cardiologist. Don't rush.
I was diagnosed with AF about 2 years ago. I had never heard of AF. When I had my first episode I got the wife to rush me to A&E as I thought I was having a heart attack!
I'm sure you Dr will put you on some heart medication, and a statin to lower your cholesterol levels. I have slightly elevated cholesterol, family related. I'm 51, fit and active.
I think if your situation was life threatening, they would not have released you from Hospital.
I too have children (3 teenagers at home).
For me, my biggest trigger is stress. Last year I had 19 AF episodes in 10 months, and 3 trips to A&E. I was put on a 6 month waiting list for an Ablation.
This year my life has been far less stressful, partly to me making lifestyle and job changes, and last year my Mother n Law who had terminal cancer who shifted in with us until sadly she passed way in Hospice last October (2021). Prior to my ablation in September, 7 weeks ago, (finally after a couple of Covid delays), this year I only went into AF twice in 9 months.
From my own personal situation, I found sitting back, doing some research, talking with people really helped in dealing with the stress. I kept a diary of when an I went into AF, and noted any potential food triggers and stress triggers. This helped when talking with both my regular Dr, and the cardiologist. All my episodes aligned with a stressful situation.
For me a bit of time to think it through helped get my head around it. It also helped my wife, as naturally she was freaked out as well.
All the best
Blake (New Zealand)
Dear Bamhead21
So sorry to hear of the anxiety that your recent diagnosis has given you and the way it has effected your life.
Don't worry that there maybe people worse off than you, this is all about you and how this condition can be managed for you to carry on life with your loving children.
The questions that you ask can not be easily answered { medical side } for it seems that it is an ongoing investigation, would I borrow money to help find out more? also I cannot answer you that, but the last thing you need adding to your burden is being in dept, but on the other hand if it helps relive your anxiety ....... but will more information do that? and will you borrow more to continue your treatment?
There maybe a delay on the NHS but no-one is left behind , you seem to have been looked after so far, why not continue ? this is not for me to advise you and certainly I would never judge anyone trying to do their best for both themselves and family, just make sure that its the best way to go if you have to borrow to do it.
Many on here have done both, worked with the private sector to help their position with the NHS, your own Dr will be able to guide you with this.
Certainly your Dr needs to know of the stress and anxiety that this diagnosis is causing you.
I am thinking of you as you make up your mind on the next step to take, I really wish that I could be of more help.
Take care and please keep us informed, you are not alone and never will be.
Thank you for your kind reply, the GP looked at my age 55 and said my cholesterol tested high in August he said prob due going through menopause. He then checked the 24hr ECG results from my GP records and looked at them compared to the ECG I had done in A and E.He said there is a problem with the lower and upper Chambers of my heart according the the readings on the ECG.
He said because of my symptoms, cholesterol and ECG combined he suspects I have micro CAD. He said it's not the large arteries but the little ones.
Well after a lot of googling last night and taking in the diagnosis from the lipid clinic I have not slept.
He suggested my GP prescribe aspirin or clopidogrel and something else I can't remember now all a blur. I need to stay alive for my children it's them I am bothered about, and the length of time it d going to take to get seen / diagnosed/ treated if possible. Anxiety is through the roof. I was working out where to get buried last night no joking I don't want to die yet.
10 years ago I was rushed to hospital with a suspected heart attack. My 3 children were aged 11, 15 and 17 at the time.
I was presumed to have microvascular angina, which is what I think the doctor meant when they suggested you have 'micro CAD'.
Microvascular dysfunction is when the small blood vessels in the heart fail to dilate or stay dilated in response to extra demands like exercise. It causes microvascular angina.
This type of angina is more common in menopausal women.
It is treated by medication.
After being referred to a specialist, I had a specialised angiogram and my diagnosis of vasospastic angina was confirmed. The large blood vessels in my heart go into transient temporary constrictions. This causes angina mainly at rest.
One of the most important self management strategies I have had to learn, is managing my stress and anxiety.
Emotional and mental stress along with the cold are the main triggers for my angina.
If you can try not to google, Dr Google's consulting room isn't always reliable.
I use breathing and relaxation techniques, meditation, self hypnosis, Tai Chi and Yoga to help me keep calm.
I am admitted to hospital about once or twice a year to stabilise my angina.
You may find this free app helpful, it's got lots of information and techniques about managing anxiety and stress.
Thank you for your kind reply it is appreciated. The gp didn't mention angina he mentioned the top and bottom micro arteries not working causing missing beats. They are so scary. Maybe that s angina like you said. Thank you for any advice and anything I can do to minimize further risk
Banhead21, try not to worry. There was a bloke on here celebrating his 40th anniversary of heart bypass surgery at the age of 71 (ish). So he was 30 then. And since then treatment has moved on leaps and bounds. I am not a Dr nor an expert, but you could do worse than search this forum for the key words you can remember, you will find loads of people posting with the same as you. This will hopefully give you comfort that you are not on the terminal list yet šš, when you get that far, you will be the first to know.
As regars going private, you might be looking at a bottomless pit. So far you don't have a confirmed diagnosis, you don't know the severity or urgency of your condition and you have no idea what the treatment may be (if any). Personally, I would hang fire until you know more (your GP may be able to help), then decide if it is worth foing private and what the extent of that private intervention may be. If you are thinking of a loan, you have finate resources, use them at the most critical point, not to keep your mind at rest. (My opinion only). Best wishes, I'm sure you will be sick of your kids before they attend your funeral š¤š
As someone on here said in another post, welcome to the club no-one wants to be a member of! Whilst worrying about known serious health condition(s) is perhaps inevitable it is far better than being oblivious to it and then experiencing a life changing event or even worse. You cardio related conditions have now been identified and you will now be treated for them, and until and if any major intervention is required you will be given instructions on how to conduct your life supported by medication. But I'm afraid worrying will not solve the problem, indeed it could make it worse, so difficult as it is, just accept it and put your trust in the medical teams who are now responsible for your care. As for borrowing money for private medicine that is a decision only you and your family can take, bearing in mind self funding private medicine is not cheap. You will have to balance the cost against earlier treatment compared to the NHS, but the long term outcomes will be the same. To address this you could arrange a private consultation with a cardiologist (a GP referral may be needed) to find out what treatment is likely and then you will be able to get a better idea of cost. The consultation without tests is likely to cost around Ā£200-250. Finally if its any consolation I am likely to have FH because my natural cholesterol is above 9, same as other family members it turns out, but even though this was discovered over 20 years ago I am obviously still here. With statins and lifestyle changes you can significantly change your cholesterol profile for the better and stabilise what has happened inside your body, although unfortunately not reverse anything. And now you have been diagnosed with FH it may be a good idea to get close genetically linked family members, particularly siblings, cholesterol tested if they have not already done so. Your children may need testing too as a precaution which is something to discuss with your medical team. I wish you well.
It sounds to me is what you are dealing with is a "could be" diagnosis. Hypercholesteremia is often a go to diagnosis if cholesterol is out of range, there is a specific test that can confirm or deny this diagnosis, I was told I had it too, without a proper diagnostic test, yet my cholesterol level is now in normal range without statin intervention, so don't worry to much about cholesterol, it's dynamic and varies from day to day. Ectopic beats can also be benign , many people have them and have functional blood flow, so wait until you have had proper testing and confirmed diagnosis and you may find life style changes are all that is necessary. In my opinion none of what you have been told in indicative of imminent danger, especially if you have not been told you have angina..
Thank you for your reply it's appreciated, a locum GP noticed I had a history of high cholesterol, she asked me to do a fasting lipid test, the results came back I am am EXTREMELY AT RISK IF CARDOVASCULA DISEASE. yes it was in capitals in the letter.I am now on statins, but the eptopic beats are separate and are getting worse, last night it showed on the ECG thank God as normally I don't have them on the 30 second test....
The on call doctor in a and e went into my GP records and came to the conclusion due to my age, menapause, cholesterol level and diagnosis of FH by the lipid clinic and the ECG report my beats so to say we're coming from the top half of my heart and the bottom.
As you can imagine I was shocked and thought ****** hell, both.
He sad I probably got micro CAD and noted to my GP he recommends aspirin or clopidogrel and a couple of other things. By this time I was in a panic thinking my life expectancy is over and thinking of my children.
My GP is not in until wed, I know it sounds petty and selfish but the waiting for an appointment with a cardiologist, the tests then the results is making me I'll with worry.
Sorry for soundng selfish.
This could take months
This is my experience. Which may help. When they found I had a congenital heart disease. Back in February the accident and emergency department informed the congenital heart disease department at Norwich. GUCH for short. This is a department that only concentrates on congenital heart disease. Now I assume many large hospitals have these departments but the Somerville heart foundation is a good Web site to look at , as is the British heart foundation. Since I have been with the GUCH department I have had 24 hr ecg, 24 hr blood pressure check, MRI Scan? And a stress test on a static bike. Fortunatly in February my local A and E hospital done all the blood tests and CT scan and echo scan which found the congenital heart problem. And also had chest xray. All these test have been done since February. Which is quite impressive considering the current state of our health service. And my specialist has discussed me at an MTD meeting to see what plan needs to be put in place. To some relief iam not going to have surgery. This was discussed with Guys in London. So what iam basically trying to say if your issue is genetic and you where born with it then I will assume we can class this as congenital? Therefore you may be lucky to get all your tests done on nhs, quickly. But I suppose it can depend on the health area you are in. I hope this help.
I too have Hypercholesterolemia. I was diagnosed in my late 40s when I developed unstable angina, after ignoring chest pains on excerise for years, and at the time I had a four year old child so I know how it is to feel that the sword of Damacles is suddenly above your head. However, there are ways of lowering the cholesterol using statins, which also stabilise any plaque, and there are now injections, such as Evolocumab, (trade name Repatha), or the newer Inclisiran, if the statins are insufficient or you can't tolerate them. I started Repatha about 4 years ago soon after it was approved by NICE and only then was my cholesterol fully under control so I have had to have some replumbing done along the way, but I am now 70 and I've never had a heart attack. I do have some chest pain on strenuous excerise due to some mico cvd, but I have a GTN spray that allieviates this.
We are the lucky ones in the sense that now diagnosed we will be treated and in my experience once you get into the NHS system you will be well looked after. Both my mother and maternal grandfather died in their 50s with their HF undiagnosed, but I have lived to see my daughter grow into a fine young woman thanks to some lifestyle changes and the NHS.
As for the ectopics, like many people I also get these, especially when I'm nervous or stressed. Alcohol and caffeine can also makes them worse. My GP told me that as long as they don't bring on chest pain they are harmless, but I am not medically trained and suggest you go back to your GP and ask him to explain more fully as to whether you should be concerned. You can take Beta blockers for ectopics, although I didn't get on with them and Ive learnt to live with bouts of ectopics.
I can't advise you about whether to go private, but I would say that if you should get chest pain bypass the GP and go to A&E.
Apologies for the length of this post, but I hope it brings you some comfort at this frightening time. Now you've found the forum there will always be people to offer you support.
GP spoke to a cardiologist for advice about palpitations and my lipid results. I have now been referred on an urgent basis to the palpitations clinic at the Freeman Newcastle. A bit worrying to say the least how long the app will take who knows?
I notice that your post was 5 months ago, so hopefully things have moved on and you're getting the treatment and support that you need. As one of the others who replied to you said, those who have symptoms are the lucky ones. My father and my brother both died of coronary heart disease in middle age without warning. It is only since my brother's death that my familial hypercholesterolaemia has been recognised (despite other extended family members having died early).I was started on statins which I have had difficulty tolerating. I've reduced my statin (Rosuvastatin 40mg) to four times weekly, which so far I'm tolerating, and my cholesterol has come down to the upper end of normal. I'm checking privately with Medichecks, because GPs are not experts and are not that interested. I'm going to post my most recent results on here for the experts to take a look at. In the meantime, I hope you're feeling calmer about your health and are doing well. Best wishes.
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update re full blood tests and 24hr Holter fitted at my GP surgery
Worried
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