What to do Next??

[Lisell]

I posted about a month ago that I had hoped finally that I was going to be diagnosed with Inappropriate Sinus Tachycardia. So at the beginning of December I had yet another 3 day Holter to look at this. Handed it back dutifully 3 days later expecting to get a letter within a couple of weeks as promised.

Nothing appeared, so I waited until after Christmas and because of the 'Rona' gave them a few extra days. I phoned today to see what was going on, was told that a letter had been emailed to my GP but not to me (rude!!). Basically they are sticking to the stress answer. I was slightly confused because this monitor was requested by a different cardiologist but the analysis was carried out by one who has it in his head that I am stressed, why didn't the cardiologist who requested it look at the readings.

But what annoys me is that how can you say someone is stressed from a heart reading without talking to the patient in depth about what is going on in their lives. I spoke to a cardiologist in the first instance for about 5 minutes before he did blood pressure readings etc.

So I am unsure of where to go from here, I don't want to be treated medically for stress (because I am not), but I need this heart to behave. So do I ask to be referred yet again to another hospital or do I bite the bullet and pay yet again to see a private doctor who seemed to think it was IST only for the NHS to ignore this.

HELP!!!

[Lisell]

Hi, I was thinking of doing that if I went down the private route, so I could go armed with info. Wasn't really sure I was allowed to do this, but think I will definitely ask now, thank you.

[Midgeymoo17]

You have a right to request copies of them but can be charged for it.

The only thing you have a right to have copies free of charge of is letters sent about you. Test results are not per say classed as letters,

My cardio does not send GP test results-just one letter summarising main findings. I get this letter but if I want copy of full report from individual tests have to request and pay.

FYI: You can request to see test results free of charge but that does not normally include providing copies.

[Hidden]

The system is noticeably different in the U.K. to wherever you’re based. Midgeymoo’s reply is accurate, although where GPs are using an online patient portal like Patient Access, most do now add a scan of any letter or report received to it, including test reports if they’re sent: I had both an MRI and a CT for rheum last year, and they only sent the GP summary outcome letters, not the test reports themselves. Conversely, the GP requested a holter, and the full report was sent to them as the requesting doctor, so it was added to the portal.

[Lisell in reply to Hidden]

Hi, I can't see correspondence on my portal our docs don't allow it, so all I can see are test results (as in blood and urine results) and repeat medication. Not sure why they are disallowing documents being scanned.

[Hidden]

Getting a lot of medical stuff, not just cardiac concerns, resolved is a bit of a pain in the bum when it comes to the stress and mental health angle. I’m 37 and have a history of depression and anxiety stemming back to my mid teens that I made the mistake of mentioning to cardiology, and it quite routinely got thrown up as the source of my palpitations, despite the fact I haven’t had mental health problems for years and years, and I do actually have a diagnosed arrhythmia requiring daily medication. I also have a ‘stressful’ home situation as a single dad and full time carer to my disabled daughter so doctors often like to use that as an explanation for almost anything not obvious or straightforward, when most of the time I’m not stressed about my situation at all: I now know I was mid arthritis flare when experiencing terrible fatigue and feeling run down, but all the GP was interested in was how stressed my daughter’s situation was making me. Because I have a form of inflammatory arthritis that doesn’t show up in blood work, it was completely missed for over a decade despite otherwise obvious symptoms. Everything that was happening was pinned on stress and mental health, and multiple joints are permanently wrecked as a result. I was also told to my face that numerous painful and debilitating symptoms I had were ‘all in my head’, when it turned out I needed intracranial surgery - it was indeed all in my head, just not in the way they were suggesting, and it took almost losing the ability to walk at the age of 25 for them to realise that was the case. All of this because I was severely depressed for about 6 years in my teens and they’ve decided I must also be stressed by my personal circumstances even though I’m really not 🤷‍♂️

I believe I may also have IST, as my resting hr is currently mid 50s, but for the last decade, literally just saying a sentence has it jumping 30 bpm. Walking across the room puts it up to 120 - 140, and I hit 170+ no trouble at all when working out, even though I’m on medication to lower my heart rate to manage the arrhythmia I’ve had for the same length of time. My GP requested a holter last autumn which revealed PVCs and PACs (the PVCs were known about as they trigger my SVT), and showed I exceeded both my safe maximum and my safe minimum heart rate over the 24 hours, and the GP has gone back on an agreement to refer me to cardiology on the grounds that my holter is ‘normal’ and IST is only diagnosed if daily average hr is above 100bpm. Because of my resting rate and the lows (I sometimes drop to low 30s in my sleep, and can get down to mid 40s when awake), my average hr was low 90s. This is actually an inaccurate description and understanding of IST, as it can also be jumps like the ones I routinely experience, not just overall elevation, but it is a poorly understood condition, and there’s not actually a lot that can be done treatment wise even if I got the diagnosis. In addition to that, my cholesterol is clinically high and seemingly getting higher by the month, despite having an excellent diet and regular exercise, there is horrendous cardiac family history on both sides, and inflammatory arthritis is a known increased risk factor for CVD, but no one wants to know about that, either. The point is, they’ve decided it’s stress and/or anxiety, and if I keep pushing, from experience that assumption will only stick longer or get worse. There’s actually quite a bit of interesting research being done around medical bias, but having experienced several types firsthand, it’s fairly terrifying to know that there’s around 30 individual forms that have now been identified: I’m not excusing it, but doctors are only human at the end of the day, with all the traits and flaws that go with that.

I appreciate this probably isn’t a reassuring post, and I’m not actually knocking the NHS as my daughter and I would both be dead by now without it, but if you are in a position to go privately, I would do so. You can request a second opinion from another doctor or hospital, and it could get you sorted, but there are also zero guarantees they won’t be influenced by the previous conclusions drawn.

[Lisell in reply to Hidden]

You seem to have been through the mill. Unlike you I have never been stressed, depressed or suffered anxiety so I am at a total loss as to where they got this idea from. In a strange way it is good to hear of other people facing the same battle, makes you feel you are not being a awkward patient.

I have been diagnosed with sinus tachycardia but the hospital just told me to live with it because all the tablets I had been put on either didn't work or I ended feeling very sea sick with them and they don't offer ablations. Hence me not being happy and going private for a second opinion. He was a professor in tachycardia and was raging that I had been left high and dry. He was certain it was IST and requested the NHS do tests for a Kidney disorder first and if that was clear it was IST. Kidneys were clear so was hoping another hospital would take note, but not to be. My daily HR average is usually around high 80s or high 90s, but my HR can dip to between 35-45 so this brings the daily average down. Sleep is usually between 70 and 80.

Like you basic everyday tasks can see it race up to 180, exercise is difficult and unsustainable for long periods.

From what I've read IST is diagnosed by having a daily heart average 90 or above or a HR that races to over 100 on the slightest exertion.

Sleep HR is over 70

Fatigue

Shortness of Breath

Palpitations

Exercise intolerance

I don't think many docs fully understand IST or the impact it can have on a persons life.