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Calling All Pots People - What Is Your Resting Heartrate?


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As some of you probably know, I'm tweaking my dose of synthroid as a replacement hormone for my removed thyroid.

Obviously, we have POTS and our heartrates go up when standing. What I want to know is:

What is your usual resting heartrate after reclining or after sleep?

What happens to your heartrate after sitting for a few minutes? Does sitting affect your heartrate?

Do you find in the course of a typical day that almost any motion sets off an increased heartrate? As an example, turning over in bed? Getting up to get something? Eating? (I'm not talking about deliberate exercise:I'm talking about normal everyday simple activites, things that affect POTS people but don't necessarily affect normal people.)

By having dysautonomia, does that mean in general we have difficulty adjusting our heartrates to almost anything (including bending over) compared to normal people?

I'm asking to help me judge what my increased synthroid dose is doing?

Any insight as to your normal "POTsy" heartrate responses will help me judge. Thanks in advance.

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All rates are UN-medicated: (no BBs)

Supine: 40-55 bpm up to 65-70 bpm if I roll over, but settles back very quickly (a couple heartbeats.)

Sitting: 60-99 bpm fluctuates greatly depending on what the rest of me is doing and arm position. If my legs are under me or out straight in front of me, I'll be on the lower end.

ON BBs:

The sitting rate stays between 60-75 bpm.

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It has been so long since I have been unmedicated...but I believe sitting it still wasn't too bad like 80 - 95. The second I stand, hr jumps up to 70 bpm. Any...and I mean any activity and it is way worse. Talking can send it up 20 bpm.

On bb's my resting hr sitting is probably around 60 - 75. I am much happier on bb's. ;) BUT nomral activity is still so limited.

Before bb's, going up the stairs would send my hr up to almost 190. I didn't know my hr was related to orthostatic intolerance before my TTT. I reallly thought it was activity induced.

Don't know if this helps.

Erika

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I take 88 mcg of Levoxyl daily for Hashi.

Supine: 75-85 bpm occasionally I'll get a bit tachy if I roll over, but not lately.

Sitting: 85-99 unless I am talking, eating or otherwise "engaged" in almost anything ... in which case it is likely 95-105.

Tricky thing for me about heart rate, is that when I am particularly activated my heart rate variance is very wide. That is to say it may be 85 when I exhale and shoot up to 105 when I inhale. And it does this on every single breath. So when I look at my heart rate watch I realize that the value it displays is actually give or take 10-20 bpm!

Oh I wish it was an exact science! ;)

Good luck getting your dose where it feels good for you. {Good, of course being a relative term.}

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That is to say it may be 85 when I exhale and shoot up to 105 when I inhale. And it does this on every single breath.

So true. I also noticed I could lower my heartrate by breathing out slowly, but it occurs only during exhaling. It seems to me that most of us have heartrate increases if we do ANYthing, even sitting. No wonder we are fatigued!

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I find that my resting heart rate can vary alot depending on how ill I'm feeling and what phase I'm in. During a good phase while lying down it'll be between 60 and 80.During a bad day it'll probably be between 90 and 108. Sometimes it has spiked up to 130 and higher for a few hours just lying completely flat and quiet - I tend to feel scarily ill at those times. Also all my holter monitors have detected HR runs of 153 at times durng my sleep. I've equally had really bad timess where my lying down HR was 50! It just seems to go all over the place. I think that might be why I've reacted so badly to beta blockers and any medications I've tried.

I definitely find sitting can cause my HR to jump quite a bit too. It'll often be maybe 100-130 while sitting...again this will depend on how ill I'm feeling over all during the day.The worse the day, the higher it will be. I find breathing out can help it be less uncomfortable too . I often find three consecutive out blows can help a little bit.

Eating affects it too but again does so most when I feel most ill. During bad times my BP can be very low and my HR can be 150 after food and it makes me feel hellishly bad. I don't be even able to lift my head up or walk to the bathroom for around 2hours after I've eaten. When I'm going through a "good time" I can take eating for granted and it's complete absolute heaven!:(

I also find that during bad times that just turning over in bed ,and particularly lying on my right side with my legs out straight, sends my HR through the roof. It wakes me up in the night if I roll over. During my "good times" that doesn't happen at all.

Do other people find their sensitity to movement and eating etc can alter dramatically depending on what phase they are in?

Very good luck with getting your dosage right FutureHope.

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Do other people find their sensitity to movement and eating etc can alter dramatically depending on what phase they are in?

I'm glad you brought up the idea of "depending on what phase I'm in". I am wondering whether we are different depending on "how poorly we're doing"? Like, for instance, we eat a dessert rich in carbohydrates, and then our heartrates climb higher than the normal? Or we "wore ourselves out" going to the doctor, so our heartrates are higher than normal?

Or, we're having a stressful week, so our heartrates are higher than normal? The list goes on. I suppose we're really unpredictable when it comes to heartrate?

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I did lying / sitting / standing BP and HR measurements yesterday evening. I had just been to a quiz at my local Borders bookstore so nothing too exciting but I was feeling awful.

lying 141/88 97

sitting 150/97 111

standing 149/98 127

However I know that I can have a resting HR as low as 45 when lying down and have had rates of 55 when sitting. Sometimes when standing my HR is as low as 80.

When I am symptomatic I do get big jumps in HR just changing position like rolling over in bed.

Flop

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Wow! It seems near impossible to make heads or tails out of anything except that we are variable and our heartrates jump up or down and sitting or standing makes it go up.

You all were very helpful. I realize that I have to be very careful when using my heartrate as an indicator of optimal synthroid levels as my heartrate is variable as well, and seldom in the "normal" range. Thanks a lot.

I must say, though, that other than having POTS or dysautonomia, I am now aware that sub-optimal levels of thyroid hormone negatively impacts my life. I was literally a walking "dead person" who experienced mental dullness and extreme fatigue.

I'm still fatigued, but it is different than what I experienced when hypothyroid.

God bless you all!

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sitting 50-80; standing 60-120; supine 45-80. I've been getting some uncomfortable lows. current seated bp 105/69. current standing bp 108/74. but those numbers vary enormously. i'm not too symptomatic today.

Hi,

Thanks for your numbers. Are you on beta blockers by ay chance? Some of your numbers are lower than I've ever seen in me.

Also, I noticed the pulse pressure of your blood pressure readings is similar to mine. Pulse pressure is the difference between the two numbers. My body tends to have a difference of 34 between the two numbers. But I have narrowed pulse pressure sometimes. I always thought 40 pulse pressure was the ideal?

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My 12 yr old son (dx of POTS) is adult size - 5' 9 " and 160 lbs. In medicine he qualifies as an adult.

His resting sitting HR -- 90-110

Laying down-- 70-90 (dropped to 48 on halter monitor while sleeping for short periods)

morning standing--180-200

standing medicated and hydrated or after about 10:00 am--130-150

He says that he doesn't feel bad or feel a fast heart beat when his HR is elevated - only if there are other factors such as heat or activity . I don't get it. I can see his heart beating in his chest when it is high but he has no idea that it is going fast??

About the pulse pressure. The textbook BP is 120/80 so you are correct about the 40 mmhg distance being ideal.

When my son had unexplained shortness of breath I took his standing BP and it was 100/88. I almost passed out. I am a medic on an ambulance and my training tells me that with a pulse pressure like that, he should be flown out by helo due to fluid around his heart called pericardial tamponade that is not alowing proper filling. They teach us that that condition will cause a narrow pulse pressure - they didn't teach us about POTS - big suprise right? His sitting BP that day was 122/68. I have been tracking it for a few months and the pulse pressure always narrows when he stands. Sometime the top number stays the same but the bottom number always comes up 10-15 points.

I called his Cardiologist and he explained to me that POTS patients are at times lacking enough blood volume when upright(cuz it's all in their feet and legs) to fully fill all the chambers of their heart,especially the left ventricle that is the "last stop" before it gets ejected into the body. He said that this would cause narrow pulse pressures that would mimic a pericardial tamponade.

Very scary to me. He told me to keep Kyler very very hydrated. Turns out that Kyler had a low grade fever that was causing even more pooling than usual that day. Tylenol fixed the problem but he said that if he ever gets any illness or dehydrated that it could cause the same thing.

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My h/r is all over the place it changes every time i move big egzagerations of at leasrt 30 bpm each time ..... and when i need to wash bath or get dressed it will be 140/150plus but it will come down i have t sit for a while ....

when asleep a holter monitorer recorded 60 .... but even while l lie down on the bed watching tv when i have monitored it my self it will just keep going up and down even while i am laying there still it will go 78 then climb up to 98 and then back down again .....

and when i stand up it will sore off up to 130 plus and any sight activity will increase it ......i have enormous variations but they are a constant daily event, this weirdness now as i call it, is now my norm!!!

and it has been this way for two and a half years and never changed its patern i am always fatigued i have also notice that my bp is the same never any consistnacey with either of them .....

i too have hyperthyroid and i only take 25 mg daily and my doctor has never increased my dose ........

normal activity is very limmited and i too get bad reactions to bb they send my heart irregular which is very scary ......

and when i have a cold or the flu or other illness like an infection the heart rate will stay at a constant high around 130 for the duration ot the illness .....

i try to live my life now within the new bounderies ....

tilly

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Worried Mom

I appreciate you relaying the doctor's explanation of narrow pulse pressure. (Where was your son evaluated?)

My pulse pressure narrows when the lower number climbs upon orthostasis, but sometimes the upper number is high as well. I do not feel well on beta blockers.

I really appreciate seeing how varied we are because all these responses remind me that relying on heartrate to determine whether I'm HYPERthyroid is not a good idea.

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