Following a recent angiogram (with acetylcholine) I now know my angina is vasospasm. I first noticed it early 2014 and it’s gradually worsened since but thankfully not (yet) at night or at rest.
My symptoms suggested micro vascular angina but those vessels appear to be in the clear. The coronary artery spasm finding was a surprise to me.
I’ve taken a statin and Isorobide since my first angiogram in 2019. I was also given Diltiazem but stopped it last year due to awful oedema (needed diuretic) and it didn’t seem to be helping with the angina. Gtn spray since 2020.
I’ve just started Verapamil and dreading a repeat of the oedema but will give it a go.
Unfortunately there was no chance to ask questions or speak to a clinician after the angiogram and so I’ve been trying to find what I can. I’ve watched the INOCA International videos a number of times, read patient stories and information on various sites and looked at research papers, not that I understand them.
Maybe there aren’t any exact answers but can anyone point me towards further information regarding:
Is there a hereditary component to this? My mother was given a Prinzmetal diagnosis in her mid 70s. She’s now 90+ and seems rarely bothered by it now.
Is there a known link with other vascular conditions? I’ve seen migraines and Raynauds mentioned.
Is coronary artery spasm linked with vasospasm that can happen in the brain?
I know my triggers but are the biological mechanics of the spasms known?
I have recently been diagnosed with osteoporosis so exercise is even more important. I’ve pretty much managed my angina by anticipating my limit which is a flat walk. With no oedema and no cold weather it’s 90 minutes but I’m floored physically. Can I try to push my boundaries to build up stamina? I guess that question is best put to a cardiology support nurse so will try to find one in the team that dealt with my angiogram.
I have a cardiology phone appointment in August so will ask questions there too. In the meantime it’s a really horrible experience being left in the air.
Thanks all.
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I have replied today to a similar question. I have had this since 1982. By 2002 when I had a heart attack but no CHD, the medics still had no clue. I was treated for a good few years but to no avail as if I had CHD. If anything I was worse. I gave diltiazem a good go. I think it was particularly damaging to my health, so I eventually refused it. Spasm no worse or better. 2021 diagnosis of hypothyroidism. I have taken the meds for one year and had virtually no pain. I can even exercise now. Before 2002 I was a regular at the gym - pain or no. So the NHS could have saved tens of thousands of pounds and me too as I have not been able to work since 2002. The test (even if it was not indicated - which it was if the docs had kept themselves up to date/checked other symptoms) would have cost pennies and I would have been saved years of excruciating pain, no job, etc etc. I give you the same advice. Get a test for hypothyroidism - the hidden disease that is allegedly so easy to treat. There are research papers to back up the thyroid connection if you check. Doctors and consultants don’t seem to know about this.
Could you provide some research articles to support your views about hypothyroidism and non obstructive coronary artery disease, NOCAD ?
How was your non obstructive angina diagnosed?
The symptoms of microvascular and vasospastic angina can be very similar.
My thyroid function was tested and was found to be normal.
There are several theories as to the cause of vasospastic angina, top of the list is a disorder of the inner lining of the blood vessels, endothelial dysfunction, next an vasomotion disorder of the muscle of the coronary arteries.
Milkfairy I will attempt to pull the info together. I don’t have everything at my fingertips because I have been on and off searching for info for years and I have quite the collection. A very important thing (from my experience) from what you say. “My thyroid function was tested and found to be normal”. You will find maybe even thousands of replies to that, on the hypothyroid posts on this very HealthUnlocked site about thyroid testing. Doctors are notoriously unable to read the results of hypothyroid tests. The NHS tests in themselves are not considered fit for purpose and I would dare to add here that doctors much prefer ‘heart’ stuff. It’s so much sexier than plain old humdrum hypothyroidism. As soon as the medics discovered they could do nothing for my pain they quietly dumped me and left me with a whole bunch of drugs that further damaged my health. I stopped taking them about three years after my heart attack in 2002. No CHD found in my case. 2 x angiograms showing coronary arteries kinking and doubling over themselves. The issues you refer to in your post were in their infancy in my time and frankly still have not moved on much. Yes those things happen/are observed but why. Well it may just be because the vital hormone in your body to make your heart work properly just is not being produced in quite enough quantities to do that optimumly. The heart is a particularly high user of thyroid hormones. It’s why the medics, when they do finally discover that there is a problem with the levels in your body (often very late in the game) are fairly motivated to get it treated. Check anywhere in the NHS blurb and the motivation is clear. I am still amazed to have finally come across people with this, it would seem, still very rare condition and symptoms. I originally put out a post on the hypothyroid section not realising it did not come up on other sections of HealthUnlocked. My computer skills are minimal. I know I was disappointed at the results (no-one knew anything about it) so it’s not even a common symptom for hypothyroids. People who replied were supportive (lovely) but they hadn’t experienced this elusive ‘illness’. They off course pointed me in the direction of cardio. However you now have a potted version of my story. Twenty years without heart medication post heart attack but continued pain; I learned to manage it myself. Not the life I wanted or expected. It’s not going to be the answer for everybody (you few) but it’s worth having the discussion with the research about subclinical hypothyroidism in hand. Now I must try to collate it for you. Give me some time because as my hypothyroidism was left so long to be diagnosed other symptoms mean I am not quick. I am however pleased to end my ‘loneliness’ as a sufferer from this condition.
I have an appointment with my Cardiologist at the beginning of July.
It would be helpful to have any information you may have by then.
Have you considered asking for your heart condition to be reviewed by Cardiologist who has an I depth understanding of microvascular and vasospastic angina?
There is an increasing interest in this area of Cardiology.
I am in hospital once or twice a year and attitudes have certainly changed. From being originally told I couldn't possibly have angina because my coronary arteries are unblocked to
the Cardiologist, on call last week, reminding the junior doctors on the ward round that I was the expert and they should listen to me!
Wow you are right. Things have changed with the attitude thing. Maybe more people are turning up with this little known illness. Doctors listening to patients? I have a great GP but they have little time to look outside the ‘ticky’ box system of working, which has permeated all walks of life. Whilst I am a bit overexcited finally ‘meeting’ someone with this bunch of symptoms; I have had to learn to ration my energy otherwise I can’t get the basics done in life. It is my intention to get you info asap. Forty years has taken its toll but I am very grateful for the release from the angina symptoms which have blighted my life for a very long time. I had my heart attack visiting relatives in Scotland. The consultant there knew there was a problem which was not CHD related but he was literally scratching his head. He was curious as to what was actually going on. He tested me for all sorts of rare heart conditions as he had me in intensive care for nearly a week. I wish I could have stayed with him for treatment. I might have got somewhere then. My own cardiologist told me in no uncertain terms six weeks before my heart attack that I was absolutely in no danger of having a heart attack. She was an exceptionally nice person but ………. No I have not gone back to cardio since they have let me down so badly and from what I read they are still tootling around without any substantial answers. What is the point twenty years after the heart attack? Most people having heart attacks and receiving no treatment are dead far within that time. And still no-one (my GP) even alludes to it all - other than they look at my annual bloods, high cholesterol (but slightly lower since thyroxine), kidney failure (stable since heart attack and probably caused by the heart attack and subsequent meds), diabetes markers were reducing over the years anyway (back to below low risk since starting thyroxine). These are all known and highlighted markers for hypothyroidism but were ignored. Look I realise I am talking too much. I just want to give others the benefit of my many years of pain and experience of my situation and if the info is any use to anyone else - great. I don’t necessarily expect this treatment to answer every case of coronary spasm. Unless the treatment you get deals with it, all theories are pure speculation, even coming from the medics who maybe can’t keep up with the huge amount of research in all fields being undertaken. I was only researching one particular set of symptoms myself, never knowing what else (already known and taught to medical students) that hypothyroidism or subclinical hypothyroidism was capable of in the human body.
I have just done a quick review of research papers online with Google. Quite a few papers now but I am a bit frustrated by some of the attitudes referred to by the authors displaying the lack of sexiness of the subject and commenting on the lessening of interest by the cardiologists (which is exactly my own experience) when they can’t get to the bottom of it. This shows remarkable lack of empathy for patients. I find it’s similar with hypothyroidism. I have not checked any statistics but I am sure the cardiologist who did my second angio said this ‘syndrome’ was mostly seen in women. Hypothyroidism whilst not exclusively women, the bulk of sufferers are indeed women too. Even the government admit that women are likely discriminated against in health care. We are presently awaiting the outcome of a government backed report of research they have been undertaking to clarify this view.
You will have quite a bit of reading. Quite a lot of the conclusions cover fancy drug regimes. I found the drugs worse than useless. If you are struggling for fuel for your car engine (thyroid hormones are known to be the jumpstart for metabolism, the fuel necessary for the heart and other bodily functions), you don’t put in sludge (drugs that shut down your metabolism) as it will eventually stop working. Interesting that many conclude HYPERthyroidism to be a culprit but luckily it has been highlighted that Hashimotos disease which can display both hyper and hypo symptoms is indeed related to this condition/syndrome.
As there is so much to be found and so little to simplify the situation, it might be best if you look at the research and decide what you understand yourself from it, so you can authentically talk to your cardio.
Suggestion to put in Google
“Coronary artery Spasm and Hypothyroidism”
Be ready to check what thyroid tests have been done. The TSH test which the NHS use cannot be relied upon. Hormones are complicated and powerful. This test is just not thorough. You can check the hypothyroidism pages and get their advice about private tests if the cardio won’t take on board the results of your own research.
Please excuse the level of my interest and attitude towards this subject matter. It’s just I have had forty years of it and although hypothyroid medication has not managed yet to deal with all the symptoms I have - the chest pain is the one thing that has virtually been resolved by it. Let’s face it, the heart is very much the engine which runs our bodies and if it is not working properly we are very much affected by it. The accompanying pain is no joke. It’s not fair of me to build up people’s hopes when (if you are like me) only to have your hopes dashed umpteen times. My enthusiasm is well meant. Best wishes.
Times are a changing.....Here is the latest consensus document published by the BHFand National Institute of Healthcare Research, NIHR regarding the diagnosis of angina non obstructive coronary arteries ANOCA.
Thank you Milkfairy. I have been unable as yet to read this properly. I knew I was not feeling absolutely ok in my communications with you. Unfortunately this is the nature of hypothyroidism in some people. For some reason I was what might be called, displaying hyperthyroid symptoms for no apparent reason I am aware of. “Wired but tired” as someone on the thyroid pages of HealthUnlocked so aptly described the sensation. I have since been suffering from the opposite. I call them ‘Lost Days’ which are the inevitable follow up of the Wired but Tired. I will reply when I am sure I have read your info. Thank you for supplying it.
Milkfairy thank you for sending me those papers to peruse and apologies again for taking so long to get back to you. The first one is about the work they have done on ‘differentiation’, which I know is considered important work. I know that when I first had symptoms, I would have given my eye teeth to know this research was being done and my condition acknowledged. The research had begun but there were not many papers/references at the time, far less treatment. I think I have said I was treated as if I had CHD which they knew I did not have. This paper is proof that the suspected underlying manifestation of pain are probably correct but no clear why, in my opinion. So after 20 years that is how far they have got. I have no idea how long any research takes to confirm something that was suspected 20 years ago. This may be normal. What is terribly disappointing is the very last sentence in the conclusion. “However, contemporary evidence linking specific therapies to outcomes is still awaited”. So just as I suspected the same drugs used 20 years ago are presently being used. Terrible (for me). I think the drug, in my opinion, that did the most damage (and the lingering effects are still with me) was Diltiazem. I faithfully took this drug as I did not want to spend time in Intensive Care ever again. My phrase, which I still continue to use today (although not taken the drug in about 15 years) is “I can’t get off the sofa”. This was then translated into Prozac. Luckily I was still young enough to attempt ‘life’. It seems like pure coincidence that treatment for hypothyroidism has finally relieved me of this debilitating after 25 years. Today I have noticed a couple of contributors who have the coronary spasm symptom picture along with hypothyroidism, so I am going to follow those up too. I can already see their over all package is different from my own but I might learn something there too. Thank you again Milkfairy and I hope you get to the bottom of it. No-one else can understand the impact on quality of life (and worse) than another suffering this pain Big Time. Great name by the way.
I have lived with vasospastic angina for 10 years. I also have migraines and Raynauds Phenomenon.
I had an angiogram with acetylcholine in 2014 which confirmed my coronary vasospams.
There seems to be antidotal evidence that suggests there is a connection between vasospastic angina, migraine and Raynauds Phenomenon.
Is Vasospastic angina hereditary ? Again there is very little research that it is or it isn't.
I am unfortunately badly affected by my vasospastic angina. I experience most of my pain at rest however I do also experience exertional chest pain too.
I have just spent 8 days in hospital to stabilise my coronary vasospasms. I am treated with IV GTN and morphine.
I have a really supportive Cardiologist and have a careplan for the staff to follow when I am in hospital.
I am sorry to hear that you don't seem to have the same access to a Cardiologist.
Can I ask why you cannot discuss the results of your angiogram with acetylcholine with the team that performed the test?
Did you have your angiogram as part of a research trial at Glasgow or St Thomas's Hospital?
Microvascular and Vasospastic angina are complex conditions.
You can have transient contrictions in your coronary arteries or microvessels.
The research is beginning to uncover the causes of these types of non obstructive coronary artery disease NOCAD, another term used rather than Ischaemia non obstructive coronary arteries, INOCA, is Angina non obstructive coronary arteries, ANOCA.
You may find this website helpful, it was written by 4 patients with over 50 years combined experience of living with microvascular angina and coronary vasospasms. They are supported by 30 world leading experts.
I find this really interesting as I had enlarged thyroid due to cysts diagnosed a year before my atypical angina symptoms started . Will read up any articles before my next cardiologist appointment at end of June
Hi. My dad, two sisters and a cousin also have vasospastic angina AKA Prinzmetal angina. We also think my dad's mother had it. Because of this, I had my whole genome tested and found the defect in the endothelial NOS gene which means we make less nitric oxide. This is the substance that keeps the endothelial cells lining arteries from contracting.
There is well documented gender bias in medicine. My dad and I have identical symptoms. Cardiologists believed him, but not me.
Hypothyroidism is very common, with a male to female ratio of up to 1:8 so you would expect a significant number of women with VSA to also have hypothyroidism. I would be interested in the articles you mentioned.
TSH is essential to diagnose primary hypothyroidism but best practice is also to measure Free T4. What a lot of medics also don't realise is that the TSH reference range (incorrectly called the normal range) has a skewed distribution so that instead of half of normal people having level in the top half of the range and the other half of people having a level in the bottom half of the range, a larger proportion of normal people have a level in the bottom half of the range. The consequence of this is that there will be a significant proportion of people who have a TSH in the top of the reference range will have a level that is high for them. It's also useful to have thyroid peroxidase antibodies measured.
I was taken off amlodipine for very swollen legs. I'm now on lercanidipine which is better. It might be worth a try.
The sequencing was done in the USA. They sent me a kit in the post which I sent back and could track via it's barcode. I got a disease screening report for a large number of illnesses but also have access to my whole genome and can compare my sequencing to a normal one. I looked up a couple of genes associated with VSA and it was noted on the genome that I was susceptible to coronary artery spasms. It said which base change was in my DNA.
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