Postural Orthostatic Tachycardia Syndrome

[AlisonG]

Hi there, thanks for asking. Sorry about how long it has taken to reply.

In short, I'm doing pretty well at the moment. I hesitate to say that I don't have POTS anymore, but I haven't had orthostatic tachycardia by any meaningful definition for at least two weeks. The difference between my resting and standing heart rate is not larger than 12 beats or so, which I read is normal. I think the main contributor to this is that I have begun taking thyroid.

I found this winter to be particularly harsh, with many of my neurological symptoms worsening, despite feeling a little better during August. I was getting fed up and was trying to look for new ways to approach the problem. I started looking into thyroid again, as I found it a confusing topic, rereading Peat articles and Barnes's work. Then I read an article about hypothyroidism that stated this:

"Thyroid hormone effects on the heart and peripheral vasculature include decreased SVR and increased resting heart rate, left ventricular contractility, and blood volume (Figure 2)." [Thyroid Disease and the Heart, Journal of Circulation]

I had previously read an article on POTS that indicated these parameters in the opposite direction.

"We conclude that all POTS is related to decreased CO, decreased central blood volume, and increased systemic vascular resistance and that a variant of POTS is consequent to postural hyperventilation." [Postural Hyperventilation as a Cause of Postural Tachycardia Syndrome: Increased Systemic Vascular Resistance and Decreased Cardiac Output When Upright in All Postural Tachycardia Syndrome Variants, Journal of the American Heart Association]

And finally, somebody directly asked Peat about causes of POTS in an email.

"JO: Do you know what causes POTS?

Ray: Hypothyroidism is a common cause."

These things all inspired me to begin to investigate thyroid therapy more seriously. My mother has hypothyroidism, poorly treated by just T4, and I have always had a fairly slow pulse, just 60 beats per minute at rest. I would have probably tried thyroid sooner if I wasn't so put off by the legality and confusion about obtaining it.

I'm now three weeks into therapy with a combination product, starting with the smallest possible dose and increasing as necessary every two weeks, and all of my hemodynamic symptoms are way better. I don't notice any exercise intolerance when cycling to work, palpitations have become rare and much less intense, and my heart now beats in a steady, smooth rhythm. My resting pulse is often 78 beats per minute, and afternoon temperatures are now reaching 98.3 degrees Celsius. My extremities are now noticeably warm rather than cold or clammy. I no longer suffer from insomnia, often feeling tired enough to sleep by 11pm. I still don't feel my old self, my consciousness doesn't feel how it should, but I'm feeling confident that things are finally moving in the right direction.

My symptoms were a little worse when I first started thyroid, but that was a price worth paying for the benefits I feel now.

Hope this helps.

Hi Tenacity. I hope you are continuing to have improvements with your POTS. Do you have another update? I've been looking for answers for my daughter who tests positive on the "standing test" and has other POTS symptoms. Trying to discover if hypothyroidism really is the causal/partly-causal factor and whether boosting acetylcholine every which way is fundamental to reversing and any other critical pieces. Btw, love your name. I think this is what it takes.

 

[Vileplume]

Hi Tenacity. I hope you are continuing to have improvements with your POTS. Do you have another update? I've been looking for answers for my daughter who tests positive on the "standing test" and has other POTS symptoms. Trying to discover if hypothyroidism really is the causal/partly-causal factor and whether boosting acetylcholine every which way is fundamental to reversing and any other critical pieces. Btw, love your name. I think this is what it takes.

Not to jump in on your convo with tenacity, but do you know your daughter’s waking body temperature? That’s a strong indicator of thyroid function.

The infrared forehead thermometers are very unreliable, as a side note! Oral and underarm for ten minutes, or ear or rectal thermometer for 5 mins—those are good ??

 

[AlisonG]

Not to jump in on your convo with tenacity, but do you know your daughter’s waking body temperature? That’s a strong indicator of thyroid function.

The infrared forehead thermometers are very unreliable, as a side note! Oral and underarm for ten minutes, or ear or rectal thermometer for 5 mins—those are good ??

Her morning temps are still low even after 60 mg NDT for three months. They fluctuate between 97.3 and 97.8.
I wish I could find a decent, reliable thermometer that isn't mercury (they take so long and are frustrating to read). I've owned two oral digital and one touch-forehead digital and they will give different readings in the same sitting. If you have a good suggestion for a reliable thermometer let me know!

 

[Vileplume]

Her morning temps are still low even after 60 mg NDT for three months. They fluctuate between 97.3 and 97.8.
I wish I could find a decent, reliable thermometer that isn't mercury (they take so long and are frustrating to read). I've owned two oral digital and one touch-forehead digital and they will give different readings in the same sitting. If you have a good suggestion for a reliable thermometer let me know!

I've found rectal temperature to be the most reliable. I think in the mouth, there's a wide temperature fluctuation depending on where exactly the thermometer rests (under tongue, touching the roof, right or left side, gums--and usually the person moves it around).

I always get a consistent reading with a rectal temp. It's certainly less comfortable, and some people might feel embarrassed about it, but if it's the most reliable method ?‍

What type of NDT does she take? It could be worthwhile trying a different brand, such as cynoplus, to see if it has a stronger effect

 

[AlisonG]

I've found rectal temperature to be the most reliable. I think in the mouth, there's a wide temperature fluctuation depending on where exactly the thermometer rests (under tongue, touching the roof, right or left side, gums--and usually the person moves it around).

I always get a consistent reading with a rectal temp. It's certainly less comfortable, and some people might feel embarrassed about it, but if it's the most reliable method ?‍

What type of NDT does she take? It could be worthwhile trying a different brand, such as cynoplus, to see if it has a stronger effect

I think if I ask her to do rectal temps, she'll be done with me! Though I'm sure they are much more accurate!
It says NP Thyroid not the bottle. I've heard NDT can be inconsistent in it's levels.

 

[Tenacity]

Hi Tenacity. I hope you are continuing to have improvements with your POTS. Do you have another update? I've been looking for answers for my daughter who tests positive on the "standing test" and has other POTS symptoms. Trying to discover if hypothyroidism really is the causal/partly-causal factor and whether boosting acetylcholine every which way is fundamental to reversing and any other critical pieces. Btw, love your name. I think this is what it takes.

Hi there. Can't believe it's been a year since my last update. With thyroid, I found that the small dose I used to take wasn't enough to keep the symptoms at bay, and soon I was having palpitations regularly again. I had to increase the dose, slowly, and have stabilised into taking about two grains of a combination thyroid product per day. I still don't consider myself particularly healthy, and I have good days and bad days, but thyroid has made my quality of life immeasurably better.

Unfortunately POTS or dysautonomia isn't simple, and while thyroid has given me the most relief in symptoms out of anything I have investigated, I think it's just one part of a complex puzzle. I noticed when I had a cold last winter, some of my old symptoms flared up. I think things like blood sugar, digestion, endotoxin, appetite, immunity are key topics to investigate, as I have 'unrelated' health issues regarding all of these, and it's where I've turned my attention now that I feel I understand thyroid a little better. I don't see the problem as trying to fix my POTS or dysautonomia, but rather to find the state of health that might allow me to recover.

I'm curious about your thoughts regarding acetylcholine - I haven't looked much into it. I wish your daughter the best of luck in her health journey, and thank you for your encouragement.

 

[AlisonG]

Hi there. Can't believe it's been a year since my last update. With thyroid, I found that the small dose I used to take wasn't enough to keep the symptoms at bay, and soon I was having palpitations regularly again. I had to increase the dose, slowly, and have stabilised into taking about two grains of a combination thyroid product per day. I still don't consider myself particularly healthy, and I have good days and bad days, but thyroid has made my quality of life immeasurably better.

Unfortunately POTS or dysautonomia isn't simple, and while thyroid has given me the most relief in symptoms out of anything I have investigated, I think it's just one part of a complex puzzle. I noticed when I had a cold last winter, some of my old symptoms flared up. I think things like blood sugar, digestion, endotoxin, appetite, immunity are key topics to investigate, as I have 'unrelated' health issues regarding all of these, and it's where I've turned my attention now that I feel I understand thyroid a little better. I don't see the problem as trying to fix my POTS or dysautonomia, but rather to find the state of health that might allow me to recover.

I'm curious about your thoughts regarding acetylcholine - I haven't looked much into it. I wish your daughter the best of luck in her health journey, and thank you for your encouragement.

Hi Tenacity. Thank you for responding. I really appreciate being able to talk with someone else who has experience with this condition. I decided to purchase CDP-Choline to try, but haven't given it to her yet as I realize it's best to do one thing at a time so as to know its impact. But I'll definitely let you know how it goes.
At the moment, we are busy trying to supplement her thyroid. She's been on 60mg of NDT for a while, but recently we added a tiny bit of T3 (6mcg twice), to which she had a bad reaction: lightheaded, shaky, rapid heartbeat and dissociated. It may be what they call "pooling", a term I heard in the "Stop the Thyroid Madness" book. Apparently it has to do with cortisol being either too high or too low for the T3 to be distributed to the cells.

I would love to know if there are any other supplements or food items or really anything that you feel like helped you significantly?

 

[Tapioca]

@Tenacity @AlisonG
Hi, do you Tenacity still have POTS? What about your daughter, AlisonG?

If so, I would greatly appreciate if you and your daughter could do a quick test for me.
It’s called measure your Control Pause (CP). It’s best to measure it as soon as waking up while still in bed for more accuracy (Morning Control Pause or MCP). I have attached the instructions here with 2 pictures here.

BTW, I have POTS as well.