EP.375/ Postural Tachycardia Syndrome Diagnostic Pathway and Criteria

Podcast

13 Dec

I recently did a couple of Instagram carousels about postural tachycardia syndrome or dysautonomia signs and symptoms I see in clients - and the response was absolutely overwhelming, unlike anything I have experienced before (and I’ve had my Instagram for about 12 or so years!).

The post has been viewed over 120,000 times and has been saved around 500 times now.

This is clearly something so many of you are struggling with, and I had a lot of people asking how to get diagnosed, or saying they’ve been dismissed by doctors.

So, today’s episode is a bit of an emergency response to all of these requests. Now, I have done a number of episodes on POTS and its connection to endo, MCAS, SIBO and hypermobility or EDS in numerous episodes and it’s often just woven into most episodes because I see it so often. But I think this response has shown me I need to do a very clear, very succinct series on the topic itself, perhaps covering exactly what it is, symptoms, causes, management techniques and so on. Now, naturally, it would make sense to start the series with what it is and symptoms, but because so many people are currently contacting me asking how to get diagnosed in response to my posts, I am starting here, and next year, I’ll look at a very specific series.

In the meantime, I’ve put in the show notes a selection of episodes covering the topic.

But, before we get started, I will do a very brief explanation of POTS and dysautonomia. Dysautonomia is a spectrum of conditions affecting the autonomic nervous system, which is the system that governs involuntary actions in the body like breathing, blood pressure, heart rate, etc. POTS is one of these conditions, and it is characterised by an elevated heart rate when going from lying down or sitting to standing, causing a myriad of symptoms from a pounding heart, dizziness, feeling faint, and much more. Now, the symptoms of POTS are far reaching, and aren’t just isolated to going from sitting to standing, and so in the show notes I will link to my two posts on signs and symptoms, plus a few helpful symptom lists from charities, etc.

So, how do we go about getting diagnosed with POTS or dysautonomia? This is something I do a lot with my clients in my one to one coaching and in my group coaching and one off sessions, because so many of them have the symptoms.

The first step, is to collate a list of symptoms and connected symptoms. What I mean by connected symptoms is that because POTS has several co-conditions such as MCAS, hypermobility or EDS, SIBO and IBS, bladder issues and more, I also ensure that my client takes to their doctor all of these symptoms too, and the diagnoses if they have them, as it builds their case up.

So, I will note down whether my client has:

Key symptoms

Dizziness

Feeling faint or fainting, whether now or when they were younger

Fatigue and brain fog

Exercise intolerance and poor recovery

Any trouble walking or walking for long distances i.e. needing regular breaks, or struggling for breath, or feeling like their heart is beating faster than it should for a gentle walk and so on

Chest tightness and or chest pain

Breathing difficulties i.e. breathlessness, feeling like you can’t get enough oxygen in

Palpitations, or a racing or pounding heart

Swelling in the legs and feet, especially after standing or walking for long periods

Colour changes in hands and feet, they can turn blue or purple, especially after showering, standing or walking

Headaches and migraines

Cold and heat intolerance - for example, you feel faint in the heat and cold feels unbearable and you struggle to warm up

Excessive sweating, especially sweaty hands and feet

Having episodes of uncontrollable shaking

Symptoms worsen towards your period (though sometimes they may worsen towards ovulation)

Supporting symptoms

A history of dislocations, sprains, muscle or joint injuries, body pain, hypermobility or flexibility, or a lot of body and joint stiffness (which can occur with hypermobility, especially as we get older)

Gastro symptoms including nausea, poor appetite, feeling full easily, vomiting, diarhhea, bloating, constipation

Extreme anxiety or physical symptoms of anxiety

Blood pressure fluctuations

Bladder issues such as frequency

Okay, so you have these symptoms. I strongly suggest you first speak to a GP or specialist versed in POTS, because otherwise, a lot of doctors will dismiss these symptoms as anxiety. For my clients in the UK, I suggest that they go to a doctor at the London Hypermobility Unit, which is a collection of doctors who work with the POTS, EDS, Endo, MCAS, etc demographic. In America, I would recommend The EDS Clinic, Dr Tania Dempsey, Dr Larry Weinstock, Dr Lawrence Afrin or Dr Alexis Cutchins.

Now, if you’re starting with a GP, be aware that despite it being a prevalent condition, many GPs are not aware of POTS, and POTS UK actually have a GP guide they recommend you take with you to your appointment (I’ve put the link in my show notes). If your GP still dismisses you, then please, please get another opinion and see a GP who knows what it is or is at least willing to learn and refer you to the right doctor.

Now, many doctors can diagnose you with POTS but it is most often a cardiologist, though a GP and neurologist can diagnose too. So, if your GP isn’t well versed in POTS, I recommend you ask them to refer you to a cardiologist who is.

There is typically a very thorough process to a POTS diagnosis, because it also involves ruling out other causes of these symptoms, so I’m going to start with the key tests that actually diagnose POTS itself, and then tests that either support diagnosis and give doctors more information, or tests that rule out other conditions or issues that could be contributing to symptoms.

Key tests

Poor Man’s Tilt Table Test

In my training, I know of this test as Poor Man’s Tilt Table Test, but it’s actually called the Active Stand Test. You may have your GP preform this in their practice when you first go into discuss your symptoms. Your doctor will ask you to stand up from sitting at their desk, and monitor your heart rate and blood pressure for 10 minutes. Now, in my training and in my experience, this is not enough to rule out POTS or dysautonomia, but some doctors will immediately dismiss POTS being an issue if they don’t see enough of an increase in heart rate from this activity.

Now remember, dysautonomia exists on a spectrum, and that’s why further investigations are needed as well, because they will give deeper insights into what’s happening with your autonomic nervous system.

Tilt Table Test

The main test is the Tilt Table Test. So a tilt test is a test where you are strapped down onto a bed (so that you don’t fall), and there’s a foot rest for your feet at the bottom, and you are tilted upwards from a horizontal position. Some sources say you are tilted to a 60-70 degree angle whilst others say 90, so you’ll need to check with your doctor if you want to know what it’ll be for you. You are then held there for up to 45 minutes, and during this time, your blood pressure and heart rate is monitored and you are asked to report symptoms.

The idea of the tilt test is to essentially induce symptoms to see if it’s the position change that causes them. This means in people with severe symptoms, they may faint during this test, which is why you are strapped onto the bed. If you do faint or have very bad symptoms, the test will end early because it will normally indicate a positive test, if accompanied by an increase in heart rate of more than 30 bpm.

Adrenaline test

There are three types of POTS; neuropathic, hyperadrenergic, and hypovolemic and we’ll get to these in more detail in another episode, but hyperadrenergic POTS is characterised by elevated levels of adrenaline, causing issues like high blood pressure and blood pressure fluctuations, shaking and anxiety to name a very few of the symptoms. I actually see hyperadrenergic in a lot of my clients and so I would love you to push for this testing, however, it’s not often tested for, especially in the UK, because the facilities are not available, according to POTS UK, and I will agree that adrenaline was the one test out of all of these that they left out, and I really wish they could have done it because I am certain my levels are elevated.

The adrenaline test involves your blood being drawn and adrenaline levels being checked when lying and standing.

Supportive tests

24hr ECG/Holter Monitor

This is a test which monitors your heart rate over an entire day and night, whilst you go about your day to day activities. The test involves a little monitor device, very small, that is attached to sticky patches that stick to your chest. Some sources report the device is worn on clothing and links to the sticky patches, but my device was also stuck to my chest via patches, so it was easy enough to wear, and I think I actually wore mine for a whole week upon reflection, which is sometimes done as well.

The idea of this test is to monitor heart rate across the day, and at the same time, you track when you experience symptoms, and so the doctor can see whether the symptoms correlate with unusual changes in heart rate. Often, if you know there is a trigger for your symptoms, you will be asked to expose yourself to that trigger to induce symptoms.

POTS UK also report that the 24 ECG is usually accompanied by an ambulatory blood pressure monitor - which interestingly I was never given, despite having all of these tests - and this test randomly checks your blood pressure over the day as well. And I will say that if you can push for this, do so, because even though POTS doesn’t trigger a significant drop in blood pressure upon standing, dysautonomia conditions tend to cause a lot of issues with blood pressure, such as postural hypotension.

Urine test

Electrolytes will also be tested across 24 hours with a urine test, and this is to see whether an electrolyte imbalance is triggering symptoms but also because, according to POTS UK, people with POTS often have low sodium levels. I did have a brief look into this because my understanding is that people with POTS need more sodium than most to raise blood volume, but it wasn’t my understanding that it’s common for sodium levels to be low, so I’ll need to look more into that!

Tests they may also do to rule out other conditions to ensure it’s POTS

Blood tests

You should also have a range of blood tests taken, these look for issues like iron deficiency, low B12, kidney issues, and so forth, that could be behind the symptoms. Now, I want to point out here that it’s very common for people with endo to have iron deficiency, but that does’t automatically rule out POTS - though it will certainly make things worse. I’ve linked to a few episodes in the show notes on deficiencies that mimic POTS symptoms.

ECG

It is standard for patients to also have an ECG or electrocardiogram to look for any other signs of heart conditions that may be responsible for symptoms. An ECG according to the NHS, is a test checks “your heart's rhythm and electrical activity”. In this test, they apply sticky patches over your chest, with wires coming from the patches and attached to a machine that monitors your heart beats.

Echocardiogram

An echocardiogram, according to the NHS, is “a scan used to look at the heart and nearby blood vessels”. It is an ultrasound scan that can look for heart damage and signs of conditions such as inflammation or structural issues.

Diagnostic criteria

So, what would be classified as POTS?

POTS UK define the diagnostic criteria as:

“Sustained increase in heart rate of 30 beats per minute (40bpm in teenagers) from lying to standing associated with symptoms of PoTS.”

For hyperadrenegric POTS, adrenaline levels need to be above 600 picogram/millilitre.

Now, I want to reiterate that if you don’t meet this criteria, it doesn’t mean you don’t have dysautonomia, because remember, it’s a spectrum and sometimes, doctors won’t tell you that, so ask when they explain your results.

Okay, so in the show notes I have linked to a couple of helpful resources by POTS UK and the NHS, as well as recommended clinics in the UK and in the USA.

I hope this episode has been useful!

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