Hi, I'm new to this forum. I have chest pain/discomfort most days and am very restricted in what I can do. I get breathless and tightness in my chest when I try to do things that most people would take for granted, including light housework, light gardening, lifting/pushing/pulling most things heavier than a bag of sugar! I am also unable to exercise or walk any distance before I have to stop. The walking part is the most frustrating as its something that's recommended to help keep the heart healthy.
I have been like this for at least 10 years and none of the doctors seem to be able to find a cause for my problems. It started around time of menopause and has got gradually worse over the years. I have high blood pressure (controlled fairly well on perindopril 4mg) and hypothyroidism on 125 mcg thyroxine. During C***d, I had an episode of bad chest pain and GP didn't see me but recommended I go straight to A & E. I was admitted then and had an angiogram which showed mild build up in left coronary artery. I was put on statins and aspirin at that time. From then on, any doctors I have seen try to reassure me that I don't have cardiac disease, however the symptoms are still the same and I have no diagnosis. I also had a cardiac echo test which was apparently also normal.
The last consultant I saw again said heart tests looked normal, but as a kind of last ditch remark at the end of the letter suggested that my GP might wish to try me on nitrates, Amlodipine or Ranolazine. Said it is possible I have a degree of microvascular dysfunction or Syndrome X. I have tried taking Elantan LA 25 and it seemed to make me worse and brought me out in a red itchy rash all over, so I stopped it. I am waiting now for my GP to prescribe one of the other drugs mentioned.
Apologies for the long post, but I wonder if anyone has had this condition or can maybe recommend where is best place in UK to go for investigations and proper diagnosis as I feel I have not had this so far. From what I have been reading, this condition seems to be more common in women and is difficult to diagnose. I assume this is why I am so long now without proper investigations as our doctors in N. Ireland may not have the expertise to diagnose this, just recommend trial and error approach to different medications.
The other thing I forgot to mention is that I seem to have some degree of contortion/twisting of the blood vessels leading to/from the heart. This was just mentioned in passing following my angiogram. From my reading up, it seems this can be caused by high blood pressure, but I wonder if this is also a factor in my symptoms, or if anyone else has heard of this condition. Thanks in advance.
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Dougie
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Microvascular dysfunction is often overlooked, undiagnosed and poorly treated.
Cardiac syndrome X is an outdated term and is certainly not used by the Cardiologists researching into this type of angina without blocked coronary arteries ANOCA.
I suggest you ask to be referred to a Cardiologist who understands microvascular dysfunction and vasospastic angina.
You may need to travel or alternatively ask your Cardiologist to contact the specialists listed on this consensus document for further advice.
Microvascular dysfunction is thought to be an inability of the small blood vessels of the heart to dilate or stay dilated in response to exercise or other stressors.
A perfusion MRI can diagnose microvascular dysfunction.
Where you given your angiogram report?
During an angiogram they can measure your coronary flow reserve, if it's reduced it can indicate microvascular dysfunction.
I live with vasospastic angina another type of ANOCA. My coronary arteries go into transient contrictions causing a lack of blood supply to my heart. I also have vasospasms in my small blood vessels too
There is a study taking place at St Thomas's Hospital in London into diagnosing microvascular dysfunction.
You can contact the research team directly yourself. Their contact details are at the end of the article.
There are several others members of the forum who live with either microvascular or vasospastic angina. I am sure they will be along to share their experiences with you too.
Thanks for the warm welcome Milkfairy and all the helpful information.
I didn't get a copy of my angiogram report. That's interesting about the reduced coronary flow reserve. I must request a copy of that report. I do really want to get this investigated soon as it has been going on too long and my life has been put on hold. It's good to know a perfusion MRI can diagnose microvascular dysfunction. I am willing to travel anywhere to see a good consultant and get this diagnosed. If you can share the name of the consultant you saw, in a private message, I would be very grateful. Thanks so much and good to know that I am not alone with this frightening condition.
I have cardiac microvascular disease/dysfunction. Chest pain and breathlessness on exertion. I have other heart issues as well. After a stress test I was told I had it. Another cardiologist in another hospital also told me I had it. Not sure how they came to that conclusion but I had a cardiac CT scan just before I was told that. I think I have had it since I was young as I had the same symptoms then. Several doctors thought I had a cardiac problem, but when I had an ecg it was normal. The MVD diagnosis came after I had takotsubo cardiomyopathy, LBBB, etc.
Yes I'm aware of Dr Beltrame but, unfortunately, he is at the other end of the country so I have no chance of seeing him. I do attend one of the leading tertiary hospitals in Australia, specialising in heart and lung disease. I've had heaps of tests - MRIs, angiograms, echoes, perfusion (stress) scan, treadmill stress echo (which gave me the first diagnosis of MVD) cardiac CT scan, which gave me the second diagnosis of MVD. As that is not my only diagnosis, they don't seem to worry about it too much. I'm on optimal medication for heart failure, and GTN spray for angina, so there is really not much else they can do - you can't stent miniscule arteries. I have to say I'm reasonably stable at the moment except for an episode of takotsubo recently - aftermath from falling flat on my face on concrete.
Hi i had a heart attack 3 years ago and stent fitted. Last 6 month or so chest pains like you anyway had angiagram last Friday arteries OK no blockage but cardiologist said I have microvascular dysfunction basic sluggish blood i was prescribed same meds as you but not got them yet so we will wait and see he said its one on the very tiny blood vessels that you cannot stent so diet exercise meds but I will never get rid of pain completely hope this helps
Sorry to hear about your heart attack and continued chest pains. I hope you can get it sorted with meds and be able to get out and about again. Thats the worst thing about this mvd, for me it seemed to have crept up and got slowly worse over the years and just seemed to take away my freedom and zest for life. I seem to be caught in a catch 22 situation, where I am unable to go for walks or do the fun stuff I used to and I know that it is this that is good for your heart and helps to strengthen it. I am hoping for a proper diagnosis and the right medication soon. Best wishes, take care.
Dougie I have had this condition for over 25 years. I had a heart attack 20 years ago due to the condition. I never found a suitable treatment from cardiology. It seems a lot of information is now available these days about it. Next to nothing was known about it when it developed in me. What I have found out (virtually by accident) is that the introduction of treatment for hypothyroidism about 18 months ago finally eased it. If I were you I would get myself tested for hypothyroidism. I would not accept a cardiologist’s assessment of whether I did or did not have hypothyroidism. Many doctors do not know how to assess rampant hypothyroidism never mind subclinical hypothyroidism. My health records reveal that I was subclinical at the time my heart pain started but went untreated. Get your blood tests done (NHS or privately - private give a more full assessment) and talk to someone on the Thyroid UK forum. You could get ease. Can’t promise anything but it is at least worth a try. Don’t wait 25 years like me.
I do have hypothyroidism for past 25 years and am on Levothyroxine 125 for this. Thyroid hormones now totally suppressed, but must say that I have never really felt totally well since I got this. I do think hypothyroid is connected with so many other conditions, also autoimmune. From what I have read this microvascular condition is more common in women and especially after the menopause with the drop in oestrogen. Makes sense that the thyroid is also connected as also a hormonal issue and its a very fine balancing act with the hormones. Glad the thyroid medication is easing your symptoms and wishing you continued good health.
Have you considered that your medication may not be optimal? 25 years is a long time and 125mcg is not a big dose. How familiar are you with your hormone levels and what they should be? TSH levels are useless as a guide, once you are medicated. You really need to get your levels checked and ask on the thyroid forum how you are doing (especially if you don’t feel right). The whole thing about hormones is just as you say “it’s a very fine balancing act” and they affect every part of the body. Many people on thyroxine are unhappy with their medication and treatment. The GP says your TSH is fine, no further treatment necessary. They don’t check the levels. It’s like if I give the car a shake I can hear there is some fuel in the tank. However I do not know how much and it may not take me far. Take a read on the thyroid section of HealthUnlocked. There are a few people with this condition. It remains rare - thankfully. My levels are not yet optimal but my heart symptoms have improved enormously. I have had a blip recently when I was under medicated and got too large a jump in medication (for me) in one go, but I am attending to that now. Our symptoms are known and recognised in the field by researchers but goodness knows how long it will take to reach mainline medicine. After all, it is rare and not every doctor keeps up with the new stuff. I think the connection was ‘discovered’ by more mainline medicine in about 2008. Best wishes.
You are so right about the thyroid and I have had some really great support over the years from the Thyroid UK forum. I will go back again and look at the thyroid but first I am going to see if I this cardiac consultant can find anything wrong with my heart and if I do have mvd. I have never had the proper investigations and I need to do this first, then take it from there. Will let you know how I get on. Thanks again for your support x
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