POTS is not rare

[Sea otter]

I know POTS in not rare, it is rarely diagnosed. But I wonder how do they know it's not rare, that it's more common that MS, if it is rarely diagnosed. It doesn't make sense. Also somewhere it says some forms of dysautonomia are rare, then again that dysautonomia is not rare. It's confusing. 

[Pistol]

@Sea otter from what explained to me is that POTS is actually quite common, but you have to understand that there are different types of it. Often it can show up in teenagers or young students in college and eventually they get it under control, or it even goes away for years. Then there is POTS triggered by certain events, like pregnacy, illness or surgery. POTS that is triggered by EDS obviously would be relatively common, since EDS is also common. HPOTS is a rare type of POTS because  - in addition to typical POTS symptoms - it has additional characteristics, such as elevated BP and cold hands and feet, tremors etc from excessive vasoconstriction, as well as elevated norepinephrine levels. As per literature only 20 % of patietns have this type of POTS. And - in my case - HPOTS seems to be genetic, since three generations of women in my family have it. 

There is also POTS caused by SFN, where the autonomic nerve fibers do not work properly or are even missing. That is rare. And then there are all the people that have all of the POTS symptoms but lack the tell-all symptoms pf tachycardia. They suffer everything POTS patients experience except the tell-all symptoms of tachycardia. So they usually just get a vague diagnosis, such as autonomic dysfunction. 

No doubt this is just the tip of the iceberg, and there are more categories for POTS-type dysautonomia. I will have some digging and find out about all the sub-types!

[Sea otter]

@Pistol Thanks for response. I was asking this for raising awareness purposes. Really don't know what to say to people sometimes, so I say it is rarely diagnosed. According to Dysautonomia International POTS is not rare. Also on the following link it says POTS is common, POTS experts are rare. 

https://www.autonomicneuroscience.com/article/S1566-0702(18)30074-2/fulltext

 

[MomtoGiuliana]

My specialist has said this too--that POTS is not rare but rarely diagnosed.  He has said that many people who have POTS have mild enough symptoms that they never aggressively seek diagnosis or treatment.  True I don't know how he knows this.  

[Sea otter]

6 hours ago, MomtoGiuliana said:

My specialist has said this too--that POTS is not rare but rarely diagnosed.  He has said that many people who have POTS have mild enough symptoms that they never aggressively seek diagnosis or treatment.  True I don't know how he knows this.  

I guess doctors are also confused because informations are constantly changing.  

[Sarah Tee]

Very interesting question!

It might depend on the definition of “rare”. Each country has its own definition (or doesn’t have one at all).

The US defines it as a condition that affects 200,000 or fewer people in the US.

Australia defines it as a condition that affects 5 in 10,000 people or fewer.

Annoyingly, each country uses different measures so you can’t even quickly tell whether the definitions are similar. Amd some diseases might be defined as rare in one country but not rare in another.

Also, you have to wonder how information could be collected. For example, maybe collecting data on the number of heart attcks is done by getting numbers from hospitals and (unfortunately) death certificates. But how would they collect data on POTS? Hospital admissions wouldn’t do it, and it’s not a notifiable disease that medical institutions, schools, etc. have to report on. Then there are epidemiological studies, or big cohort studies, like that one that has followed thousands of nurses.

https://www.nurseshealthstudy.org

But POTS wasn’t even named when this study began in the 70s.

Maybe the NHS in Britain might have figures, as it is centralised, although of course the figures wouldn’t be accurate because it is underdiagnosed, but they could at least tell us the number of people who have been diagnosed. But then this doesn’t account for the groups that tend to get better, as Pistol mentioned.

There is an article out there somewhere that calls POTS the most common medical condition you have never heard of. It might have facts and figures, such as there are. I hope someone can point to it, because I’ve forgotten where I saw it. Maybe a US newspaper?

[Sea otter]

@Sarah Tee I found one of the articles on 'POTS is the most common condition you've never heard of'. Here is link:

https://www.ehlers-danlos.com/cnnpotsfoles/

The biggest problem of all is that doctors are not educated about it so they can't recognize it. Now that patients in US have ICD code for POTS maybe they can found out easier how many people were diagnosed there. 

A lot of researches are 'old' and definitely need some updating, that's my opinion. 

 

[Pistol]

6 hours ago, Sarah Tee said:

The US defines it as a condition that affects 200,000 or fewer people in the US.

i would like to mention that according to the NIH there are 500,000 to 1,000,000 people diagnosed with POTS in the US. that is 0.2 % of the population. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7046364/#:~:text=The prevalence of POTS is,United States have the disorder.

[Pistol]

6 hours ago, Sarah Tee said:

Also, you have to wonder how information could be collected. For example, maybe collecting data on the number of heart attcks is done by getting numbers from hospitals and (unfortunately) death certificates. But how would they collect data on POTS? Hospital admissions wouldn’t do it, and it’s not a notifiable disease that medical institutions, schools, etc. have to report on. Then there are epidemiological studies, or big cohort studies, like that one that has followed thousands of nurses.

@Sarah Tee I am really not sure how they have been tracking cases of POTS. But I know that now - here in the US - POTS has a ICD code, that means that anytime someone gets that code as their diagnosis they can "count" that person. But then there are always the many people that dont have a diagnosis, or don't even know they have POTS! There are so many people that have mild to moderate symptoms and just cope. Therefore I DO believe POTS ( and other dysautonomias ) are much more prevalent then we think. 

[MikeO]

19 minutes ago, Pistol said:

Therefore I DO believe POTS ( and other dysautonomias ) are much more prevalent then we think. 

My nOH is said to be rare or medium rare. As far as i know there is no ICD code used specific to nOH. i suspect more of us are out in the wild than predicted as well.

[Sarah Tee]

@Pistol, I forgot about the ICD code – that is a great way to collect data!

As you point out, going by the NIH estimate of POTS patients in the US, it easily exceeds being officially classified as “rare”, even of you take the lower limit of the estimate. 500,000 is a lot more than 200,000!

[Sarah Tee]

@Sea otter, thanks for the link. Ah, so it was Lauren Stiles who said it. Good sound bite from her!

Here is a quote from a UK textbook:

”PoTS was named and formally described in 1993 and is not yet included in most medical school or GP training curricula. Informal polls of GPs around the UK conducted by the author at GP educational events revealed in 2014 that only 10–15% had heard of PoTS.”

Lesley Kavi, Introduction, Postural Tachycardia Syndrome: A Concise and Practical Guide to Management and Associated Conditions

https://link.springer.com/book/10.1007/978-3-030-54165-1

One day, when I have the energy, I will look into how to campaign to get conditions added to a medical school curriculum, and see whether I can do anything to maybe start a campaign to get it to happen in Australia. (That sounds a bit ambitious, but I used to do a bit of writing, so if I could get some specialists on board, maybe I could support them with press releases, a website, letters to newspapers, etc.)

There seem to be a lot of neglected conditions though. I was reading a pernicious anemia forum, and people who need B12 injections seem to have a terrible time. Ditto thyroid conditions – many complaints that doctors don’t know the latest research (as in anything that has been discovered since they left medical school, not what came out last week), and the current care standards and won’t update their knowledge. Plus the people who have fought to get cortisol pumps against enormous resistance … It goes on and on.

So maybe I need to start a campaign to change doctors’ attitudes to learning after medical school. Plus they need paid time to do this, which many don’t get. Argh.

[Pistol]

6 minutes ago, Sarah Tee said:

So maybe I need to start a campaign to change doctors’ attitudes to learning after medical school.

🙏 Wish you the very best and applaud you for trying!!!!!!!

If you check under the physicians tab you can get physician brochures- it may be helpful to give one to every doctor you go to. 

[Sea otter]

@Sarah Tee this is so true what you wrote...

Great idea for starting campaign. Go, Sarah! 😊