Consider getting a second opinion from another cardiologist. Maybe he’ll say the same thing, but if I were in your shoes I’d want a second look just to make sure

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Matt

Cheers Matt,

If it wasn't for the remoteness of where I live I would; there's no real option of a second opinion here. The only real option is going private which I looked into but the cost of a private consultant is prohibitive and would involve a 1.5 hour flight each way.

I am no doctor and neither do I know anything about your financial situation, but I would second the recommendation to get a second and third opinion.

No amount of money is worth being either dead or sedentary.

Sorry to hear this. It's tough getting news which can potentially change your life forever.

I always lead with the comment that you and your MD need to have good communication and make sure you ask all questions needed to understand your clinical situation. It's your life and your collective responsibility to understand risks and benefits. Second opinions are always a good place to start. It's unfortunate that this is not an option.

That said, you must realize that there are many opinions and ways to do things, even from the experts. His concern is that you have exercise induced PVC's, a marker of CAD/heart disease, for sure. Once the concern is there for significant/new CAD or critical clogs in the heart arteries, the advice is usually to take it easy until the testing can be completed. Never a good idea dying prior to getting the rest of your testing done. Delays are never easily endured, so I have no answer for you there. But, I'd reconnect with your doctor and ask if it's ok to resume regular exercise-after all you were doing it before you were started on protective meds anyway...so I agree with you in that respect.

But, there needs to be a clear understanding that if symptoms of concern occur, you will need attention right away. Again, risk vs benefit. Exercise is a great way to lower the long term risk, but the actual act slightly increases events (heart attacks, sudden death...). That is why you are being told not to exercise.

Find a way to get in touch with your physician. I have my patients 'take it easy' and know when they need to call for help, but others are more conservative.

good luck!


some other threads:

https://forum.slowtwitch.com/...st=last-6643505#last

https://forum.slowtwitch.com/...tring=dtoce#p6619853


edited to add-from Up to Date regarding actual risk of exercise causing sudden cardiac death: (since I had to log on to check on my inpatients in the hospital)

Exercise — The risk of SCA (SCA=Sudden Cardiac Arrest=Sudden death) is transiently increased during and up to 30 minutes after strenuous exercise compared to other times [20,27]. However, the actual risk during any one episode of vigorous exercise is very low (1 per 1.51 million episodes of exercise) [27]. Furthermore, the magnitude of the transient increase in risk during acute exercise is lower among men who are regular exercisers compared with men for whom exercise is unusual [20,27]. (See "The benefits and risks of aerobic exercise".)

The small transient increase in risk during exercise is outweighed by a reduction in the risk of SCA at other times [18,28]. Regular exercise is associated with a lower resting heart rate and increased heart rate variability, characteristics associated with a reduced risk of SCD. (See "Exercise and fitness in the prevention of atherosclerotic cardiovascular disease".)

One exception to the lower overall risk associated with intensive exercise occurs in patients with certain, often unrecognized underlying heart diseases. Examples include hypertrophic cardiomyopathy, anomalous coronary artery of wrong sinus origin, myocarditis, and arrhythmogenic right ventricular cardiomyopathy [29,30]. (See "Athletes: Overview of sudden cardiac death risk and sport participation".)

Family history of SCA — A family history of SCA, either alone or with myocardial infarction, is associated with a 1.5 to 1.8-fold increased risk of SCA [19,25]. The increase in risk is not explained by traditional risk factors that tend to aggregate in families, such as hypercholesterolemia, hypertension, diabetes mellitus, and obesity.

The magnitude of the increase in risk associated with the presence of a family history is modest compared to the two- to five-fold increase in risk associated with other modifiable risk factors such as physical inactivity and current cigarette smoking. Few studies have examined potential gene-environment interactions related to the risk of SCD. Nevertheless, it is likely that interactions of mutations or polymorphisms in specific genes and environmental factors influence this risk.

Be responsible to yourself and your loved ones. While it may be killing you not to exercise, it may actually really kill you to exercise. Do you want to be dead and your family is left with the consequences of your decision of pounding out a few quick intervals at FTP? Obviously I’m exaggerating, but I’m doing so in that you will see how ridiculous you sound. You have to consider your cardiologist’s professional opinion.

First thing is contact your cardiologist and tell him your situation and ask him again whether you can resume some level of activity and if so what limitations until you are tested.

If you don’t get the answer you’re looking for then get a second opinion.

If you have no other reasonable 2nd opinions, you'll prob have to just suck it up and wait. It does, sound however like this cardiologist is being very conservative given your hx of pain-free intervals repeatedly recently. Still, he's the doc.

Go for a walk.

Whilst I'm a huge fan of many parts of the NHS (and would have been dead at birth without them), one of the downsides is there is no right to a 2nd opinion (you can ask, but no certainty). And even then as you say you may have to travel.

It sounds like you're in the Hebrides or Werstern Isles, from your travel timings.

The other big problem is most (all ?) NHS consultants are overloaded so it's difficult to get the chance to talk to them properly or have time to come back to them with a set of well thought out questions.

A few years ago we went though a period of health problems with our eldest child, and the un-joined-up NHS way of doing things took ages (a year+ from the 1st A+E trip in an ambulance occurring) to get to the right person (I relate it to being like snakes and ladders. But with no ladders. Every avenue that is explored that turns up as a negative means sliding right back to the start).
Anyway. Once we did get to the right skilled person, he was clearly under such time pressure we never got time to properly discuss and understand the underlying problem (and the solutions).
I could well believe that you say getting another audience with the consultant is v difficult.
In the end we did go get a 2nd opinion, privately. For us, all that it took in the end was 1 hr of a seperate consultant's time
+ the records of the previous tests etc. It didn't need any repeated tests (and additional £££) for the 2nd (private) consultant to explain what was happening etc.
In our case, the 2nd consultant did basically confirm the same 'answer' as the 1st. Which is what I think you're needing.

BUT.. THE BIG DIFFERENCE for us was that the privated consultant just had the time to talk through things logically and rationally, because we (and she) had the time. Plus we had also been able to do some prep ourselves and come with a list of of questions. Which she had time to talk through and answer.
In the end, it (for us) was one of the most useful 'purchases' we've ever made.

With that 2nd consultant's review we were then also able to 'slot back into' the NHS processes fairly quickly, having made some real progress and got to the right treatment, which was then much more effective (cost, timescales and end results) for everyone.

So to sum that up.. from our (statistically not significant sample of 1) a 2nd opinion REALLY was worthwhile, and didn't have to cost the earth (a few hundred £ in our case - less than an aero front wheel or a couple of pairs of high end rinning shoes) but I recognise both 'logistically' and financially your circumstances may make that difficult.

Best of luck.

Thanks for those replies. I'm quite happy to be told to have a word with myself as I'm just not in a good place with it all. I had last year largely written off with a partial knee replacement and was only starting to get fit and strong from that when I was told to stop which adds to the frustration.

I would go for a walk, but the cardiologist, when pushed, said max hr of 90 while on the betablockers and no hills or steps. That makes going to work rather inconvenient if I obey that, as it involves solving countryside access issues on paths, so I'm trying to keep busy with office stuff while I can.

Yeh the NHS is limitted, but ace at the same time too. I had to wait about 18 months for my partial knee, but the treatment when I got it was excellent. I've tried to contact my consutlant several times, but essentially it seems I won't get to see him (barring some incident) until after I get the results of my scan in April. I am going to ring today to ask if there's a cancellation list I could be on though.

I'm in Shetland to north of north and bumf*** to nowhere, it's lovely, but has it's issues when it comes to this. I've enquired about private consultations, but I'd be looking at £2k+ for that, tests and travel before any treatments.

I have had a look around for threads re. PVC's that worsen and similar, but not found anything specific. I'll check out those other threads you linked to though cheers. My GP isn't concerned that I've stopped the statins, but I do need to sort out the betablocker situation and try to find one that works without issues.

Thanks and Hmmm...

Edit: Thanks Dale for that additional information. That's one of the reasons for me asking about this as some googling around of medical articles suggested that in the absence of 'issues' while exercising it is better to be doing something (such as up to Z2) than being sofa bound as the effect is beneficial for other circualtion reasons, never mind mental health. Obviously any discomfort it should be stopped

Hi UK based here, with also quite a bit of experience of the idiosyncrasies of the NHS.
If you are polite but firm you should find you can get a private 2nd opinion with all the test results that have already been done. So you only have to pay for the one appointment (£250 at best guess.)
You'll probably need to agree that it may not be as 'good an opinion' than if they had run the test themselves etc. but, ultimately, you are paying them to provide you with a service.

They may refuse to take any action without running their own tests but that is a next step problem.

Good luck.

Thanks Tuckandgo. Yeh, the consultation itself is about £200, plus maybe £300 in travel. I am considering it. I have a list of the costs of the various tests already done (about £1k) and then the cardiac scan itself would be around £1k.

I tried a private consultation with my knee but they said they couldn't (aren't allowed?) access NHS records, so I had to pay for extra xrays with that.

Yes, I think it would be stupid to ignore him and decide you know better, although I can understand the temptation. On the other hand, if the condition they are seeing is serious enough to ban all exercise and need a CT, I wouldn't be willing to wait for the scan in April.

I had a more minor version of the same several years ago in my mid thirties. I had a simultaneous pain in my chest and numb left arm in work one day. Obviously symptoms which ring alarm bells. I thought I knew the cause and that it was not heart related, but I wasn't taking any chances, so I went to A&E. They really take it seriously when you arrive with those symptoms, but after a few hours of HR, BP, and respiration monitoring and a blood test they were able to confirm it wasn't a heart attack and they couldn't see any problems. I had previously had chest pains spanning a couple of months which I was unable to get a diagnosis for. Best guess was a muscle strain in the chest wall or something like that. I'd also previously hurt my neck and had intermittent pain and numbness in my left arm. It seems the incident was simply a coincidental simultaneous recurrence of these two issues. I suspected that at the time but as I said, just wasn't going to take the chance.

Anyway, that's more detail than you need. The point is the A&E dept made me follow up appointments for a treadmill ECG and an echo just to be sure everything was okay. The echo was fine but the ECG reported a suspect response (don't remember the details). They made me an appointment for a "Myoview" scan to investigate....there was a 6 month waiting list! I wasn't under an exercise ban, but like you I wasn't happy about waiting months. This was all within the public system in Ireland and free of charge, but the public system here is currently a bit of a mess with huge waiting lists for many services. I decided that if I needed the scan, I wanted it now. So I attended a cardiologist privately to get some more info and a much earlier scan date. When my GP referred me he specifically looked for a cardiologist who worked with younger patients and athletes. I'm glad he did.

When I arrived at the cardiologists office for my appointment her secretary told me I was having a quick ECG before meeting her. A technician did a static ECG and 10mins later I went in for my consultation. The cardiologist confidently informed that the aberration noted on my stress ECG was not a concern, but simply a result of incompetence by the technicians who performed the test. As far as I remember she said it was something to do with electrode placements which work for the unfit, often obese men in their 60s and 70s that the technicians would be most used to testing, but are known to give spurious results for younger, fit individuals.
She'd reviewed the original scan data, and identified the issue before I'd arrived and the ECG on arrival was apparently sufficient to confirm this. She followed up by taking full family history and so on. She cancelled the Myoview which she felt was inappropriate regardless and said she would refer me for a cardiac CT if I wanted for peace of mind but she felt it wasn't really necessary. I opted to do the scan, which was probably not ideal as it does involve taking a dose of radiation, but I was still a bit bothered by the earlier results. All was well and I was told "Nothing to worry about, come back in 20 years for another check-up."

It was well worth getting that second opinion, and it was also important that it was an appropriate cardiologist. The one I went to was the founder of the national youth screening program and was also involved with screening national level athletes for cardiac risk. So she knew her stuff and as a marathon runner herself she understood the context and my concerns. I was very fortunate, both in what was discovered and findign the right people. It did cost me about €800-€900 between the consultation and scan (which wasn't covered by my insurance) but it was well worth it to me to get more competent information and avoid waiting 6 months. I'd advise you to do the same if you can, especially if you're having so much difficulty abstaining from training that you're considering ignoring medical advice!

Good to know others experiences and opinions, thanks.

I'm on the cancellation list atleast now (although they said they rarely get cancellations)
.
I think I will knock it on the head until my scan and try to re-enthuse myself with some less active hobbies (photography, learning an instrument). Though that doesn't help with my active job, but if I'm not doing anything else active atleast it's minimising the risk.

I just can't help thinking that atleast a MAF hr tubo is atleast very controlable in a way that going for a walk isn't; no hope for me eh?!

Quite frankly that sounds like bollox - I often flip between the 2 (private and NHS) and have never had a problem. Even last week when the private consultant forgot his NHS login (as he's private only now) he rang the hospital and they sent him the MRI.

In fact with regards to Xray specifically - he spent a bit of extra time getting the NHS xrays to prevent me from unnecessary exposure.

You could be right that they were talking bollox. I also struggled to get the private guy to send the private x-rays back to the NHS for my file as they were more recent taken form more angles than my older NHS ones :(

If cholesterol is ok, why given statins?

Apparently its within normal range, but higher within that range. I was told if it wasn't for the heart investigation it wouldn't get a second look. I didn't see a break down of it by the way, just a total figure of 5.5 'whatever it is', I think it was 5.4 when it was last recorded just over 5 years ago.

Edit: After looking around I may inadvertently scupper that blood test anyway as I usually IF from tea the night before (6pm ish) until near lunch, which can raise it.

I was prescribed atorvastatin (I think 20mg) if that makes any difference? I felt like a zombie with flu and could hardly function.

The beta blocker is bisoprolol. Was 2.5mg, but I was getting tight chest and shortness of breath, GP dropped it to 1.25mg, but said the consultant had actually put in my notes that I maybe should be having a higher dose than the 2.5mg. I still have the side effects, but less strong at 1.25mg, so did stop them for a while and the side effects stopped so it was the meds doing it. Recently trying them again to see if the same thing happens. I tried to speak to the consultant about it several times, but couldn't, his secretary just told me to ask GP to try a different type. Which I will when I see how restarting this lower dose goes.

Sorry to hear what is happening. I would lose my mind being told what you are dealing with. I am in the US, so am pretty uninformed about NHS. Is there a reason you have to travel to see a private consult? Give them the test results and skype with them. If that is an option, look at the US, Canada, or elsewhere for a 2nd opinion. If you get a different decision compared with what your official Dr has told you, then bugger. If you get the same information, you can have time to talk with them and learn of options. Might allow you to find different avenues through NHS as well.

Just a thought. Between that and $5, you might be able to get a cup of coffee. :)

With the case of our eldest, we DID get the NHS test results made available. That's how the cost was a few hundred quid, not thousands for us.
I think we went to / via our usual GP to get them made available to the private consultant. Thst way the flow of info was from our NHS GP instructing to 'send' the info and not the private doc 'pulling out' the info (i can see why they may stall on any non NHS doc request for info).
Of course some test results had gone AWOL (as is the silo NHS way - they were lost to other NHS departments too) but there was sufficient there for the initial 2nd opinion to be worthwhile.

Again, best of luck.

Find out what that 5.5 means. I can only guess a1c. Statins get prescribed too hastily

Some good ideas there thanks.

I'm really not sure if I could do it, as I said in an earlier post I had difficulty trying to get NHS and private to share information before. I also don't have access to the records to do it myself. I do know some one who would know though.

Skype or similar would certainly save plenty in time and travel costs that's for sure for them to look at the test results so far and see what they think.

Thanks for that Bobajob. I'll look into that.

Synthetic,
5.5 mmol/L is total cholesterol, just checked the units. I think they use different ones UK to US. There also wasn't a breakdown of ldl,hdl,trigs.

Find out what that 5.5 means. //

Maybe that is the ratio of good too bad?? Here in the US we have that number, I believe 5 is the upper limit before being too high.