I’m new to the forum and have read many posts and they have been really helpful, thank you. I have just come off the phone with a follow up consultants chat. It’s a long story but I’ve had CT scan with radioactive dye which has shown some irregularities, he’s put me on atorvostsatatin 40mg , aspirin and now a beta blocker. The thing is the consultant wouldn’t tell me if I’m at the low or high end of moderate stenosis, or the parameters of my results. The call lasted all of 4 min and he said he’s not worried, I felt he didn’t really listen to me about symptoms that I’m still having. Are we supposed to feel any different being on those meds? He’s saying he’s completely discharged me, and I really don’t know what to do now, so many of my questions I didn’t even get to ask, and what happens now, so do I stay on these meds, if so for how long? Does anyone feel the same, or any suggestions. Thank you in advance.
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Blue-yonder
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I’ve been in a similar position to you where my local cardiologist team have wanted to discharge me, despite my medication not working and remaining symptomatic. It can be frustrating. You may find the BHF cardiac helpline useful. They have some very knowledgeable cardiac nurses who might be able to point you in the right direction regarding your heart condition and what the best next steps are.
0808 802 1234
You can also put in a complaint to PALS at your local hospital stating that you’re not comfortable with being discharged due to remaining symptomatic and would like further investigations.
Thank you so much for your reply, and it’s a good idea I’ll call the BHF nurses, I did speak with them once before when it all started last May. Thank you also for the PALS I didn’t think about that, it’s just you feel like your just left out there on your own.
I know how you feel. I was in the same position with my local cardiology team for a year and a half as they felt like I didn’t require any further treatment and there was no other way of treating my niche form of angina apart from the medication that I was on at the time, which is false. I receive letters from them twice a year which almost always states the following “… we are looking at the view of discharging you”. I’m lucky that I am going to be under the care of a specialist unit in London now after having gone private.
I hope you can get the right treatment and care that you need.
I’m so sorry you’re having all these difficulties too, it’s really distressing. I felt that I wasn’t being listened too, he was just so dismissive, as he was the first time we met. I felt that I was just a nuisance, I do appreciate that they are so busy and we’re just another “heart condition”, but it’s our hearts we are trying to protect, and I felt that we can help them treat our condition's if they were more informed of any symptoms we are experiencing, maybe not!!!
I see that you say you’re now going private, it’s sad that you, as I’m sure do others feel the need to follow that path. I do hope all goes well, and thank you for reply it does help.
I agree. You would think that they would be open to treating conditions which are less common in order to develop treatment and care plans that may help others in a similar position in the future, instead of being treated like a nuisance.
I went private a few times however, I always made sure I remained within the NHS. My initial consultation was private with a specialist recently, and he has referred me for future treatments on the NHS.
Perhaps if you feel that you are not making much improvement after speaking to PALS (I rarely did) and the advice from BHF nurses, you may want to consider this route at some point in the near future. Hopefully, it doesn’t come to that.
I'd write a letter to the consultant, thanking him but also asking for more clarification, so you can begin to learn to manage your medical condition yourself for the future. Ask the questions-will I be on this for life, ask for a copy of your test results, etc, let him know YOU are interested in YOURSELF and can meds be adjusted if it doesn't suit me, what if the GP has no idea? I'm sure he had a list of people to call so didn't think it through that each individual reacts differently to a call like that! Good luck and read all you can about your issue, so you are well informed! It throws them somewhat!!
Thank you, that’s a brilliant suggestion and I do have the secretaries email address which I know they do pass on to him , as they did the last time I made contact with him. I’d waited so long for any news on the results from last July 2023, (this now being first week of Jan)2024 and I emailed them to ask to pass on my message. It was then that they gave me the 4 min call yesterday, I may say, I did have to wait another few weeks for that, but I was grateful. Back to your point though, I will definitely do that thank you. 😊
hi if they have discharged you and you are sticking with NHS, then go back to your GP who will hopefully refer you back re continuing symptoms. Feels like your starting again but it they are adamant you will be discharged then that’s the main route to go through.
you can pursue with PALS in meantime but you want to get back in the “system” / “queue” which needs a referral back into cardiology.
by the way how long have you been taking the medication?
noting also there is no GTN spray in your medication list? Would that help? Or will they not prescribe?
Hi I can relate to this sounds like every telephone consultation I have with my cardiologist always lasts 5 minutes and he doesn't listen to anything I have to say, I have moderate aortic stenosis and regurgitation. I have filed plenty of complaints to PALs didn't really do anything for me. Hope you have better luck x
Thank you for your reply it’s not sounding good for any of us, but at least we’re not alone, which is some kind of assurance, I thought maybe it was just my cardiologist.
I agree it's not great for us when it comes to be listend too, I'm always being told its my anxiety 💔, even though I have a huge history of heart issues x. Seems we all have a cardiologist who don't listen. You take care aswell ☺️.
I agree with Fanfab1 You could raise your concerns about your care including how you felt about the behaviour of the Cardiologist with the Patient Advisory Liaison Service PALS.
You can request a copy of your medical records and test results.
You also have the right to ask for a second opinion from another Cardiologist.
There is growing evidence that women have a different pattern of heart disease and they are more likely to have their heart disease misdiagnosed or overlooked.
I noticed in your bio that you have had a Transient ischaemic attack, TIA. Have you had any further investigation of this or any onging preventative treatment for this event?
I have for over 11 years lived with a rare type of angina which is resistant to treatment.
Even with a confirmed diagnosis I have had to work hard to access the care I need and still encounter Cardiologists who because they don't understand my heart condition try to contest my diagnosis.
You are certainly not a nuisance and I hope you are able to be seen by an empathetic Cardiologist who listens.
Thank you so much for responding, your so right about women being mis diagnosed or miss informed. Also thank you for taking the time to read my bio. I had the TIA in my sleep I woke feeling a bit groggy and then I could see what had happened. It wasn’t a bad one, but I had more trouble with opening my jaw and chewing and then the usual stiff left arm but it all resumed itself in about 2 weeks. It wasn’t diagnosed at the time, I’d left it to long for the blood tests. I also have a family history of heart disease from my parents, my Mum died of atherosclerosis in her sleep, so you can understand why I’m probably a bit paranoid about it all, none of which seemed to make him empathise with my concerns.
I will do what you have suggested and ask for notes and results, just for peace of mind.
Thank you again for replying it really has meant so much to have such kind response from you and everyone here.😊
I can't add to the previous posts from my own experience, as I had no follow-up with the cardiologist in 2019. However, you have received good advice from other's experiences and suggestions, so I trust you will find the empathy and support you need from the NHS very soon.
Thank you WeeHoolet, for contacting me, it’s very kind and I hope you’re doing ok now. It’s causes so much unnecessary anxiety for all of us, if only they could notify us all sooner, well with 2 weeks you’d think. Take care 😊
Stay positive, Blue-yonder. I don't know how long you have been taking your medication, but it can take a while for your body to get used to and thus, hopefully, benefit from the drugs. Don't forget, too, that your pharmacist can be helpful regarding queries about meds 🤒🦉
Thank you, I’ve be n in the meds for just over 2 weeks I know it’s still early days, I’m only on the atorvastatin and the aspirin so far, he only prescribed the beta blocker today, which he says he will write to my gp to write the prescription. Do the statins and the aspirin make any difference that you would notice, I thought they were just to help reduce the amount of plague/atheroma forming, and the aspirin to thin the blood to make it less sticky, that’s what the pharmacist mentioned when I asked. I’m learning all the time. 😊
I'm surprised you haven't been referred to a neurologist or stroke clinic. Have you seen your gp yet or have you seen them when you got the medication? I would try if possible to ask gp about that if you can. I only say this as about 20 yrs ago I had a few suspected TIA's and was referred to stroke clinic and from there to a neurologist. Strangely it turned out to be hemiplegic migraine with aura and not TIA's at all. Also my friend has been referred to stroke clinic for dizziness and losing sense of balance.As for cardiologist, cardiac rehab referred me back to cardiology in September halting the rehabilitation for me suspected I had angina. They rang me last month to see if I'd been seen yet, I said no. They told me she'd now gone away and to ask gp to refer me to a different cardiologist! I'm currently trying to get in to see my gp in the mad 8am rush and am as yet still trying 🙄.
Hope things improve for you and as suggested already, perhaps ask your gp to refer you back to cardiology again.
Oh my, you have had some troubles. I was sent a text from my doctors surgery tell me that the consultant had asked them to prescribe the statin and aspirin, and they would be available at my pharmacist in the morning. I had had no feedback at all about anything from either the consultant or my gp, this was the first I knew about any of this. I had no information about my condition until I was finally sent a copy of the letter forwarded to my gp from the consultant. It then said all that I’ve noted in my bio.
It’s all been so strange, and vacant. Im so sorry to hear all that you have been through, and still are. I have the same trouble trying to contact my gp too, I’ve waited for 2 weeks to try to talk to someone, if you don’t make it through to the surgery by 0801 you need to try again tomorrow. I really hope you get some help soon, and thanks so much for all your help and advice. 😀
Looks like we're both doing the "getting passed the receptionist battle tomorrow. Please let us know how you get on and I hope manage to get good explanations and help, 🤞🙏
Statins lower 'bad' cholesterol levels, and yes, aspirin thins the blood. They are quietly reducing your risks of a cardiac event. Beta blockers slow the heart rate and so, on a day to day basis, their effect is likely to be noticeable. Over time, your GP will monitor these drugs' effects and adjust dosages accordingly (titration); if necessary, perhaps because of side-effects, she or he will find alternative drugs. For many people, medication will be long-term. Sorry if I've made this sound like a lecture for the uninformed 🫢!
I live in a different country but request copies of each exam...test...echo etc is sent to me as well as my house Doctor to whom they are sent anyway..we do have insurance as it is the law here..no NIS or free medical service..but would imagine that your test results concern you and they should send these to you via e mail as well.
Yes you’re right, with modern technology, you’d think it would be so simple. I will start again with my gp and see how things go from there. I think the sad part is that if something happens again, you are inclined to just turn up at A&E which is awful for the poor staff there who are already so overwhelmed. If only the departments could manage their own work loads at department level, I guess A&E wouldn’t need to fill with people like us who have seemed to have fallen off the radar.
My surgery did an ECG after suspecting a missed heart beat. This pointed to the need for further investigation but as it was early in Covid the estimated wait for a first appointment was 12 to 18 months.
The private consultant was first class but I had been up front from the start that I could finance tests but not the greater cost of operations if required I had echo cardiograms, a cardio angiogram a scan. Wore a monitor twice and all this cost about £ 9000. Then I was seamlessly returned to NHS care as my stenosis was then said to be moderate and had periodic echo’s to check. 9 months later my excellent journey with the NHS resulted in a has ipacemaker and aortic valve by TAVI as I was now severe.
I was 76 at the time but fairly fit for my age.
Mine was a good experience all round even if Covid meant I was seen at 5 hospitals.
Hi, In North Derbyshire we are lucky because we have a Angina Management Team consisting of two lady Heart Surgeons. It is part of the local NHS, so we do not have to go private. Perhaps you could ask your NHS if they would start something similar. With regard to feeling dismissive by you not being given an explanation about your symptoms and medication, could this be due to your age? I suffered a similar experience when my GP blatantly told me 'what do you expect your 80'. I said tattoo DNR on my forehead then, so we changed to another practice. I am afraid that getting older leaves a lot to be desired, and from experience it can lead to being given unsatisfactory treatment. Is this treatment you experienced linked to doctors having less time to look after patients? I hope that you can get the answers you need and then get piece of mind.
Ahhh thank you for replying and making me laugh😊 I agree maybe we do expect to much as we get older, I’m 62, I don’t think that’s to old, but I suppose to anyone that’s in their 30/40’s I seem positively ancient!!!! I do understand and totally get that they “the medical professionals” are so pressed for time but as I’ve not seen or heard anything from anyone, since the start of these examinations back in August, you’d think he would have given me more than 4 mins!!!! I do take on what you have said and I think it’s a great idea about the angina doctors, I will ask if I ever get a chance to speak to someone in the future. Take care 😊
Thanks for your reply, please do ask questions about anything that you are concerned about, we all deserve answers, perhaps a reply to our GPs should be the norm I was sent for tests last Monday after having chest pain for three days. We spent 12 1/4 hours at the hospital, and I wasn't given the results of my blood tests, so I am now waiting to see if our GP will tell me.
You poor things honestly, it’s horrible just being left out there with just your own thoughts, and let’s face it we must all be thinking the same, it’s easy to think the worst, but I find it’s the not knowing is the worst. I really hope all is well for you at gp, please keep us updated. 😊
Hi Blue-yonder, thanks for your very kind thoughts. I had my annual MOT at our GPs on this Monday, apart from being slightly overweight ( fall out from Christmas) I was ok. I asked at reception if the test results taken at the hospital had come back, no they hadn't. I was told to ring later this week to see if they had been sent. If I get them I will post them on here. Thanks again.
I am in the same position discharged with meds five years ago. Told if symptoms get worse or more regular to go through gp who would refer me back to cardiology if deemed it was warranted. I went through pals to get all reports from Ct angiogram Roger more information.
how are you doing now? Have you had to go back through the process again? Sorry, I hope you don’t mind me asking, I was just wondering how long it took to go round again. My process has been nearly a year to get this far. It’s really difficult to get a gp appointment, I have to ring in at 8am every day till you get lucky with a call back. It’s this bit that’s also worrying. It’s so sad, but I see that it’s not just me in this position, it’s kind of reassuring that were not all alone, and dare I say it, in the same boat!!! if you know what I mean, not that this should be the norm. Take care 😊
Hi I am not bad Thankyou. When they saw my ct angiogram I was told that I would need at least two stents one in the LAD and one in another artery. Sadly at the same time they found a large mass between the lungs and attached to the heart so that had to be removed swiftly and because of this I couldn’t have the stents for at least a year they said because I would have to be on blood thinners etc. I rang after the twelve months and they sent me for a Dobutamine stress test, that came back ok so then I just got a letter saying you are discharged keep taking aspirins and statins etc🤷🏻♀️
I had a HA in March 2022; it will soon be the 2-year mark. I ended up with the same medications. The cardiologist at that time wanted me to take 80 mg. Atorvastatin. I spoke with my doctor and agreed to take 20 mg. Four months later, I saw a different cardiologist, and I agreed to take 40 mg. like you. That dosage seems to work pretty well for me.
At that time, I was taking 50 mg Metropolol. At that four-month point, the new cardiologist changed my dosage to 75 mg. I am still taking that amount of beta blocker. Plus, I take at least one low-dose chewable aspirin per day.
I imagine that I will be taking these drugs for life. I have CAD, and my cholesterol tended to run a little high prior to my HA. The statin has made a huge difference in cholesterol levels for me.
Probably the one drug that made the biggest change for me following the HA was the increased beta blocker.
I can’t say that I feel different from taking the statin ( some increased muscle aches, etc. ), but I feel better with the beta-blocker. But I can look at the results of my blood lipid tests and see numbers that prove a difference in my cholesterol levels because of taking the statin.
I know how frustrating it is to want to ask questions and know more about your condition, but get no answers. Can you request a copy of your medical report and/or test results? That might tell you more. Perhaps your regular doctor could interpret your results and explain more. I’m sure that you got good advice from others on this forum.
I wish you the best in getting the answers that you need! ❤️
I re-read your post, and I realize that you had a TIA instead of a HA. My mother, 85 years old, had a TIA on December 17th. Hers was while watching television and it affected her vision. She said that she looked up from the television screen to view some family photos sitting on the TV stand. When she looked at a facial photo—while covering one eye with her hand—she could only see the face with one-half of that eye’s field of vision. The other half was gray, or blank. This happened in both eyes. She did not tell me at that time since she had an eye appointment already booked for Monday, Dec. 18th.
The eye doctor said that it was probably a TIA, but he referred her to a general doctor for an exam. In fact, he called and arranged that appointment before we left his office. That appointment was on Dec. 21st. She put Mom on a statin that day, told her to take a low-dose aspirin, and continue taking a beta-blocker. While we were at her office, she referred Mom to an eye specialist to have special photographs taken of her eye and back of her eyes. That appointment was on Friday, Dec. 22nd.
The eye specialist confirmed that Mom likely had one, or more, TIAs. He urged us to go immediately to the emergency room of the hospital, and he called ahead to say that we would be walking over. We spent many hours in the ER that night—not leaving until sometime after midnight.
While in the ER that night, Mom had CT scans of her brain and carotid arteries. We could see the results on my phone within one hour of the tests being performed, but we needed to wait until the neurologist on-call could come over to review and discuss the results. I think that we both were very tired and in some shock/disbelief right then. Bottom line, Mom had scattered atherosclerotic disease without high-grade stenosis in the neck arterial vasculature. Turns out that it appears that she has about 30% blockage in the carotid arteries.
The CT brain scan showed diffuse atherosclerotic disease. There appears to be severe stenosis in the proximal P2 portion of her brain. Plus, there were chronic changes to the brain due to aging.
The on-call neurologists recommended an MRI be done on Mom’s brain and that she have carotid artery duplex ultrasound testing. Based on the CT scans, Mom was referred for a consultation with a vascular surgeon related to the carotid arteries. That appointment was on January 15th. He felt that since the blockage in the carotid arteries was roughly 30% based on the CT scan, surgery was not recommended.
On Saturday, Jan. 22nd, Mom had the MRI of her brain completed. We have scheduled an appointment with a neurologist to review the results of the MRI with us on March 4th. We scheduled the carotid artery duplex testing for February 19th. Hopefully, all of the news will be hopeful. We have had multiple appointments since the TIA, and we are tired. 😄
It is too soon to check on whether the statin has lowered her cholesterol, but hopefully, it is doing its job. She will likely be taking that drug for life.
I believe that the cocktail of drugs that you received is pretty standard when atherosclerosis is indicated. That medication will help to keep plaque from breaking off, forming blood clots, and causing HA or strokes. You may not feel that working, but your lipid panel blood test results will let you know if that is improving.
I felt better (a difference in how I felt physically) with the beta-blockers since they slow down my heart rate. After my HA, for months my heart raced above 125 bpm if I just walked from my bedroom to the bathroom. I felt awful and I was afraid to try to do much. That medication allowed me to feel better, and to begin to move around again.
Anyway, I hope that you begin to feel better with the medication! Your doctor can always make tweaks in a few months if needed. For example, you might need a higher, or lower, dosage of a medication, or you might need to try a different drug. You and your doctor can work that out with time. Mainly, what you were prescribed should help you to not have another TIA.
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