POTS; does anyone here have it? Or know about it? - Thyroid UK

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POTS; does anyone here have it? Or know about it?

WitchingHour2point0 profile image

I am struggling with some symptoms and doing small experiments to find out what triggers those symptoms.

(I absolutely won't approach the GP until I'm more certain it requires investigation.)

This morning my rhr was 81bpm. Got up and stood for 5 minutes and my HR was 127+

So something iffy happens in the morning. I'm struggling to find much online in terms of how common this is and doesn't indicate POTS. My HR goes up quite significantly while walking and on a jog hit 200+bpm so I'm trying to get to the bottom of it.

I'd be grateful for anyone's thoughts!

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WitchingHour2point0 profile image
WitchingHour2point0
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20 Replies
Obsdian profile image
Obsdian

I've got dysautonomia (not POTS) and tachycardia is a symptom for me.

This is a good website to learn more : dysautonomiainternational.org/

Obsdian profile image
Obsdian

Wanted to add, inappropriate sinus tachycardia is another condition with the symptom you describe, can be independent of dysautonomia /POTS.

helvella profile image
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Jazzw profile image
Jazzw

How long have these symptoms been going on? Weeks or months? If it’s weeks, you could be recovering from a virus. Months, you may have something like iron deficiency anaemia going on. If you take thyroid hormone replacement, it could be you’re on slightly too high a dose

WitchingHour2point0 profile image
WitchingHour2point0 in reply toJazzw

Months, if not years.

I had an iron transfusion a few months ago and seen no improvement. The fact that I haven't seen an improvement is what prompted me to look a bit deeper into it.

I will get another thyroid test but I've been stable for a year with the same symptoms so I'm not convinced it's my thyroid.

I was sat for half hour having a cuppa, walking up the stairs, carrying laundry downstairs and putting a wash on has seen my HR go to 127 so I think something is going on. 🤔

Regenallotment profile image
RegenallotmentAmbassador in reply toWitchingHour2point0

A colleague gets this when she has a cold, she has Ehlers Danlos. Hope your GP helps you find what’s up. How are your thyroid levels? My heart rate increases when I’m over replaced and if I remember rightly we both had this two summers ago, did yours resolve? 🌱

WitchingHour2point0 profile image
WitchingHour2point0 in reply toRegenallotment

My GP has been a chocolate teapot for years so I'm always wary of going to them. I'm going to keep records for a bit first and see if they show anything. :)

I don't think I've ever resolved this HR issue but just assumed it would come right eventually and it still hasn't 😂 so maybe if I can figure out what the triggers are or a potential diagnosis I can then figure out how to manage/relieve the symptoms .

RedApple profile image
RedAppleAdministrator in reply toWitchingHour2point0

'a chocolate teapot'

😀 Had to laugh, it's a while since I've noticed that expression being used. Someone I knew years ago used to say 'chocolate frying pan' instead.

helvella profile image
helvellaAdministrator

My heart rate is absolutely crazy.

Am only replying because you mentioned wondering how common it is.

Today, my heart rate has been 45-128. Long term resting heart rate around 90. And over six months my actual heart rate has been 40 to 192.

My heart rate usually drops when I have a mug of strong coffee. And I can see that there was a clear and large drop this morning exactly when I was drinking my coffee.

Probably not the same thing but just throwing it out there. I've been having problems with a high HR in the mornings especially (100-110 just sitting) and it was driving me crazy. I realised it happened after eating breakfast, so I've changed my normal porridge (been having it for 10+ years) for eggs/gf toast and it seems to have sorted it.

Couldn't find a huge amount about blood sugar impacts on HR but for me it's obvious that the porridge spikes my blood sugar and increases my HR, weird

arTistapple profile image
arTistapple in reply toDahliasanddaisies

Just an aside here Dahlia. I used to have that problem with oat porridge. I use buckwheat now. It’s got more protein than oats. It’s better for you. It’s a nicer to eat (I think). You read everywhere how oat porridge is good in that you don’t get sugar spikes but I definitely did and was starving well before lunch. Buckwheat is much more satisfying for me.

Dahliasanddaisies profile image
Dahliasanddaisies in reply toarTistapple

Oh fab, never heard of it! I'll give it a go :)

Wua13262348 profile image
Wua13262348 in reply toDahliasanddaisies

At one point I was ordering buckwheat products from the internet as it is supposed to be so good for you. It is beneficial to arTistapple. Turns out I have a food intolerance to buckwheat! Buckwheat is often used in gluten free products. I cannot metabolise it at all, and it gives me instant diarrhoea. We all have our individual quirks I'm afraid.

arTistapple profile image
arTistapple in reply toWua13262348

Oh Sh1t! Great isn’t it. All this trying and testing and finding that certain things that work well for someone else but just don’t work for you. I have similar the other way round, gluten free packaged foods always have something in them that upset me! You couldn’t make it up could you?!

Wua13262348 profile image
Wua13262348

Vagus nerve popped into my head when I read your post. You could read up on this and see if you think it fits your situation.

arTistapple profile image
arTistapple

Just yesterday I was listening to a speaker who swore her POTS disappeared on the carnivore diet.

Judithdalston profile image
Judithdalston

just curious but does your BP change too? I thought I had self diagnosed POTS from doing a NASA lean test at home, seemed to meet the criteria with rising HR on standing, but then got faints too , 4 1/2 years with Long Covid. I got a tilt table test and diagnosed with ‘postural hypotension not POTS’, as BP plummeted to 61/40 and this drove the HR to compensate. But my HR goes up with slightest effort, like filling washing machine or brushing my teeth. Your recording of when, what sets it off will be good to support your need for further investigation as no ecg, echocardiogram, 24 hr BP monitor, or lean test at local hospital picked my problem up. Have a look at stopfainting.com, very up to date info.by London cardio specialist in dysautonomia plus PoTS Uk and Standing up to PoTS ( US charity website) for more info., and try some of the tips like drinking more water or getting some compression socks ( I have now got prescription ones but can’t get them off by myself, Temu sell ones with less compression I can, which are much cheaper for a try).

Incoguto profile image
Incoguto

Definitely get it when my thyroid dose is off, over or under, but more when overreplaced. Just like you have iron IV and it did nothing for me

humanbean profile image
humanbean

Just a reminder for me...

POTS = Postural orthostatic tachycardia syndrome

humanbean profile image
humanbean

I've had a fast heart rate (tachycardia) being triggered at inappropriate times for a long time.

In my case it was first triggered by severely low iron caused by a GI bleed. I started supplementing iron and was taking it at full therapeutic dose for two years and then a maintenance dose for five years and over that period of time my tachycardia reduced in severity. I do need to take a low-dose beta blocker to keep my heart rate under control, although I wish I could stop taking it.

During the time I was taking iron I also found that high blood sugar would trigger a fast heart rate for me.

futurity.org/high-blood-sug...

I'm not diabetic and don't know a lot about it, but there is a problem some diabetics get which causes a spike in blood sugar first thing in the morning. It's called "Dawn Phenomenon". And since high blood sugar can trigger tachycardia or other arrhythmias it would be worthwhile investigating it to see if it might have something to do with your problem.

I've found that gorging on too much sugary junk or high carb foods can trigger a fast heart rate for me. So I do try and be good with my diet, but don't always manage it.

diabetesdaily.com/learn-abo...

futurity.org/high-blood-sug...

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