POTS! (but Not Pans. )

[Emstar1892]

Hello and welcome back to my never ending (probably very annoying) story!

I have now been diagnosed with POTS. My cardiologist is considering it in isolation as an independent and unfortunate phenomenon.

For anyone who doesn't know what it is, it's the onset of tachycardia upon rising, along with the pooling of blood in the body in all the wrong places, so blood pressure drops upon standing/bending down and up again/walking, etc, and in my case, I see stars, my ears ring and I can't think straight. I'm also intolerant to exercise because of it. Also unbearably thirsty all day and have terrible insomnia. Hypoglycemic at times too, though just about on top of that.

Anyway, I don't agree with my cardiologist. To me it seems like this is adrenal related, especially given my crashed FT4 and FT3 and low daytime cortisol.

I'd like to hear anyone's opinion on what they think POTS is - to me it screams of a reaction to infection, and my high b12 and low iron screams this to me too.

Thinking of a protocol of antibiotics *gasp* and/or methylene blue, but would love suggestions :)

 

[ecstatichamster]

To me it seems hypothyroid.

 

[Emstar1892]

To me it seems hypothyroid.

Thanks for replying man.

I agree I'm hypothyroid, but frustratingly I can't tolerate supplementation as my POTS symptoms actually get worse, my heart pounds all night and I don't sleep at all. So I think there's an underlying issue causing the hypothyroid, which is what makes me think infection. Hmm!

 

[ecstatichamster]

have you tried magnesium?

 

[Emstar1892]

have you tried magnesium?

Only as citrate and in a form bound up with calcium (ratio 2:1)

I've noticed it's helped with the insomnia and digestion. Intending to purchase glycinate.

Is there a symptom that I've described that brings it to mind for you? Or are you just recommending it in general?

 

[ecstatichamster]

Just guesswork but you may be very low in it, and calcium. May be seen me thing that improves things dramatically.

 

[InChristAlone]

I have gone through something similar after I crashed 2 yrs ago. My blood pressure wouldn't necessarily drop but my adrenaline would go up instantly to keep pressure up and that would lead to a hike in heart rate and feelings of anxiety from the adrenaline. It was so bad at times I couldn't carry my son upstairs without my heart pounding and me having to prevent a panic attack by doing breathing exercises, and sometimes it would take way too long for my heart to calm back down again. It was miserable. I still get shortness of breath at times if I try walking around when my heart is pounding.
But I found sodium to be essential to keeping blood pressure up I think it's very important for the adrenals.

What is your blood pressure? If it is below 100/60 then yes this would mean insufficient adrenal hormones. Does pregnenolone or progesterone help at all? I have to be careful with progesterone before bed as it seems to increase aldosterone and my heart pounds when laying down, but it is fine beginning of the day.

Also light headedness can be anemia. Do you do liver at all?

 

[Jennifer]

My current thinking is an adrenal weakness is involved. I had similar adrenaline symptoms while taking thyroid. It got so bad that I stopped taking naps, despite being exhausted, because I feared that doom and gloom feeling I would inevitably wake up with. It was so unnerving I would actually wake up crying. I felt like I was going nuts because I couldn't figure out what the source of that terrible feeling was. It felt like depression on steroids.

I've read that thyroid will make evident the stress hormones one was running on when the adrenals had to compensate for low thyroid function, but after a year + of being on thyroid and only having those symptoms worsen, to the point that I started having fainting spells, I question if the issue for some of us stems from an adrenal weakness morse so than a thyroid weakness, especially if your systolic number is under 120 but your daytime temps are 97.8 or above and you don't suffer from cold extremities. I've been toiling with this in my head for months now and it just seems like a chicken or egg scenario given the thyroid and adrenals go hand in hand. The only solution I could come up with was to start taking herbs that strengthen and regenerate all the endocrine glands and hope something sticks. lol

 

[InChristAlone]

Yes I also believe adrenals need to be supported. Too much thyroid leads to insomnia which leads to adrenal fatigue in my opinion. I got adrenal weakness after 2 yrs of chronic stress with 2 kids breastfeeding amd being woken up all night, while also using thyroid and coffee and loads of soda. I probably had many nutrient deficiencies to go along with it. The body can only take so much and i pushed and pushed through the stress when I should have been taking care of myself better. All that to say that no taking thyroid won't fix adrenals in that scenario. Circadian rhythm is very important as well. To be sure cortisol rises in the morning and falls at night. Flat lined cortisol could be a circadian issue.

 

[tara]

Only time I had trouble with feeling faint was in my twenties, which I eventually associated with hypoglycemia.

 

[Travis]

This can be caused by heavy metal/aluminum poisoning.
Have you had any vaccines recently?
Watch out for poisons in food and read labels.

 

[Emstar1892]

I have gone through something similar after I crashed 2 yrs ago. My blood pressure wouldn't necessarily drop but my adrenaline would go up instantly to keep pressure up and that would lead to a hike in heart rate and feelings of anxiety from the adrenaline. It was so bad at times I couldn't carry my son upstairs without my heart pounding and me having to prevent a panic attack by doing breathing exercises, and sometimes it would take way too long for my heart to calm back down again. It was miserable. I still get shortness of breath at times if I try walking around when my heart is pounding.
But I found sodium to be essential to keeping blood pressure up I think it's very important for the adrenals.

What is your blood pressure? If it is below 100/60 then yes this would mean insufficient adrenal hormones. Does pregnenolone or progesterone help at all? I have to be careful with progesterone before bed as it seems to increase aldosterone and my heart pounds when laying down, but it is fine beginning of the day.

Also light headedness can be anemia. Do you do liver at all?

I'm sorry you've had to go through that, how horrible. Did you ever find out the underlying cause?

My blood pressure is 90 over 50-something, and that's when sitting!

Salt helps for sure :) I haven't tried pregnenolone because I don't want there to be any chance of increasing hormones that are already overshooting, especially at night, but if I get stronger I'll trial into it as so many people respond so positively. Progesterone I haven't tried either, I need to test mine first :) I wish tests were free!

I don't eat liver because I work horrendous hours and eat in central London 3 times a day (mainly meat, fruit and coconut yoghurt), wouldn't trust fast food liver haha.

My supplements are niacinimide (500), vitamin A (5000), vitamin D (2000), k2 (super K), glycine (2.5-3), calcium:magnesium (1:2), coq10 (30). Taking enzymes with meals has really helped too.

 

[Emstar1892]

My current thinking is an adrenal weakness is involved. I had similar adrenaline symptoms while taking thyroid. It got so bad that I stopped taking naps, despite being exhausted, because I feared that doom and gloom feeling I would inevitably wake up with. It was so unnerving I would actually wake up crying. I felt like I was going nuts because I couldn't figure out what the source of that terrible feeling was. It felt like depression on steroids.

I've read that thyroid will make evident the stress hormones one was running on when the adrenals had to compensate for low thyroid function, but after a year + of being on thyroid and only having those symptoms worsen, to the point that I started having fainting spells, I question if the issue for some of us stems from an adrenal weakness morse so than a thyroid weakness, especially if your systolic number is under 120 but your daytime temps are 97.8 or above and you don't suffer from cold extremities. I've been toiling with this in my head for months now and it just seems like a chicken or egg scenario given the thyroid and adrenals go hand in hand. The only solution I could come up with was to start taking herbs that strengthen and regenerate all the endocrine glands and hope something sticks. lol

Yes I can relate to you, I always had FREEZING extremities as a child. My mother would call me icicle! But now I don't have that, which is weird because my health has evidently declined...

Have you started taking any of those herbs? Which ones are you considering? It's complicated with the adrenal herbs as those that are "pro" adrenals are often "anti," as they just push the glands that are already failing the same goes for our intolerance to isolated thyroid supps, in my opinion. Absolute minefield.

I hate the idea of HC, but in the end we're all one giant clinical trial until science is conclusive! I'll tailor my protocol for another month, then I will seriously consider it - as a temporary support, mind.

 

[Emstar1892]

Only time I had trouble with feeling faint was in my twenties, which I eventually associated with hypoglycemia.

And then honey came along, ey? still carrying my squidgy bottle around haha!

 

[Emstar1892]

This can be caused by heavy metal/aluminum poisoning.
Have you had any vaccines recently?
Watch out for poisons in food and read labels.

Thanks for replying. I've had all the standard UK vaccines, and also the stupid sodding crappy "cancer" vaccine for the cervix that they enforced when I turned 18. Such regret on that one.

What do you recommend? I used chlorella as a chelator for a while but the beta-carotene/iron loads put me off in the end.

 

[Interactome]

Have you had your renin and/or aldosterone levels measured?

 

[Travis]

There does seem to be quite a few studies linking POTS to Cerverix. : Orthostatic intolerance and postural tachycardia syndrome as suspected adverse effects of vaccination against human papilloma virus. - PubMed - NCBI
I don't want to be a scaremonger, but it might be worth reading these studies.

 

[Emstar1892]

There does seem to be quite a few studies linking POTS to Cerverix. : Orthostatic intolerance and postural tachycardia syndrome as suspected adverse effects of vaccination against human papilloma virus. - PubMed - NCBI
I don't want to be a scaremonger, but it might be worth reading these studies.

Interesting. Thank you :) I don't think that's scaremongering at all! Given the mechanism of vaccines it also makes sense that the side effects would be similar to post-infection symptoms from other causes. On top of that vaccine, for instance, I was also bitten in Costa Rica a year and a half ago and developed the erythema migrans rash along with a fever, which is when this all started. Never took anything for it and the UK test for lyme is inaccurate and non-comprehensive, so it's still in the open in my mind (though standard screen was negative.)

 

[Emstar1892]

Have you had your renin and/or aldosterone levels measured?

Thanks for commenting, no I haven't.

My GP will only do FBCs (which is ridiculous) and TSH (yawn). I've had to get TSH, FT4, FT3 antibodies, cortisol, EBV and TRH tested privately, which cost f***loads.

I WANT to test vitamin D, calcium, progesterone, ferritin, ACTH, prolactin, I could go on........its £100 a pop. Even if I saved up for one test per month it would be pointless as the comparisons would be out of date with each other. Fighting blind!

 

[tara]

My supplements are niacinimide (500)

Not sure if you are splitting this, but maybe see whether limiting to no more than 100mg at a time (with meals) makes a difference? High doses can be a bit hard on some of us (others handle lots of it fine, so its not a definite).