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Posted

Are there other reasons I might have excessive thirst that aren't POTS?

Or, are there cases where a tilt table test doesn't show POTS that's really there? 

I have to drink 5-6 liters of water a day or else I feel sick and have headaches. I'm thirsty all the time and urinate a lot. Multiple doctors suspected POTS. My blood pressure readings are variable, 120s/80s are typical at home, while at the Dr it is sometimes that low and sometimes in the 150s/90s range. Recently I had a surgery, so I was dehydrated all day, and my pulse was 100-120 all day, even under anesthesia and when very relaxed on opioids and a benzodiazepine afterwards. (My normal resting pulse is 75-80.) In recovery, I had a scary incident where I stood up and instantly spiked a 100.4 fever. I was shaking and had to be wrapped in warm blankets. I felt better in 5-10 min, the fever resolved after 20 min.

I am not diabetic. My A1C is normal, not even pre-diabetic.

I finally had a tilt table test, and it was negative. My HR and BP did not change from laying to standing at 70 degrees. Although both were very high for me, which might be because they ask you to not eat or drink water for 4 hours before the test, so I was really dehydrated. My BPs got as high as 150/103. The nurses did not remark on that, just said I didn't have POTS. I asked about my hige water intake and other symptoms, and they had no ideas.

So what is my deal? Why do I need so much water if I don't have POTS? I also am on the hypermobility spectrum, and I suspect I have MCAS or at least some kind of intense reactivity to many drugs and foods, as well as heat and stress.

If I was super "activated" / high SNS activity so my BP was already really high lying down, could that have thrown off the test?

Also, the boilerplate language describing the test in my chart says they monitored my HR and BP for 15 minutes while laying down before the tilt, but that isn't true. I was only down there long enough for the nurse to get me all set up with the equipment and then take 2 BP readings in quick succession, and then the other nurse came in and she tilted me up. I was tilted upright for 10 min and it was way longer. Is that normal, or did they screw up the test? I'm worried they didn't give enough time for my HR and BP to come down to something close to baseline before they tilted me up.

Thanks in advance for any comments or ideas!

Posted

@SeanEgg Welcome to the forum! 

6 hours ago, SeanEgg said:

Are there other reasons I might have excessive thirst that aren't POTS?

POTS does not necessarily cause excessive thirst but rather the symptoms often improve with increased salt and fluid intake. Excessive thirst and urination CAN be caused by several conditions. Have you seen an endocrinologist? Have they checked your kidney functions? Have they tested your RAAS ( Renin, angiotensin, aldosterone ) levels?

 

6 hours ago, SeanEgg said:

Or, are there cases where a tilt table test doesn't show POTS that's really there?

TTTs can be false negative as well as false positive. However to meet POTS criteria the HR has to remain elevated within 10 minutes of being upright. 

Posted

Thanks for the welcome & the reply!

In labs over the years, I have had repeatedly had kidney function measures like BUN, creatinine, eGFR - they are all always normal. My sodium, calcium, and chloride levels are all normal as well, which is kind of interesting since I am drinking so much water you'd think they'd be low. I have never had angiotnesin, renin or aldosterone checked, but my feeling is that doctors would be skeptical that that would be worthwhile since my main kidney function measures are good.

I did briefly take an ARB (angiotensin blocker) for blood pressure, and I felt awful on it. I had to quit after 4 months. Which may suggest something's a little different for me in my angiotensin system. (?)

I have not been to an endocrinologist. My thyroid function always tests normal as well, for what that's worth.

And with the TTT, what if your HR was abnormally elevated at baseline? Would it still go up 30 (more) bpm when tilted if you had POTS, or could an elevated baseline HR (and BP) screw up the test?

I do have an appointment with my PCP in a few weeks so I can ask her about these things too, just that this is not her specialty, whereas there is a rich knowledge base in this forum- so I thought I'd try every avenue I can.

Posted
24 minutes ago, SeanEgg said:

I have had repeatedly had kidney function measures like BUN, creatinine, eGFR

Might be worth asking to have a uACR test especially if you are leaving bubbles in the toilet that don't dissipate. like you my metabolic panels are always good except for my glucose but we did find that i am leaking protein from the kidneys (ACR test) with a normal eGFR function which explains some of my symptoms.

As to the ACE/ARB meds you are not the first person that has issues with the meds. i see complaints all the time. I bailed on the ACE a while back but now i take a low dose. we will see how this goes.

Posted
22 hours ago, SeanEgg said:

And with the TTT, what if your HR was abnormally elevated at baseline? Would it still go up 30 (more) bpm when tilted if you had POTS, or could an elevated baseline HR (and BP) screw up the test?

The current criteria is an increase in HR 30 BPM or more within 10 minutes of standing without significant drop in BP. So that would mean if your resting HR is 90 it would have to increase to over 120, if your HR is 60 it would have to increase to 90. Often people become anxious during the test and that causes their HR to be elevated to begin with. 

Posted
On 10/24/2024 at 9:54 AM, MikeO said:

Might be worth asking to have a uACR test especially if you are leaving bubbles in the toilet that don't dissipate. like you my metabolic panels are always good except for my glucose but we did find that i am leaking protein from the kidneys (ACR test) with a normal eGFR function which explains some of my symptoms.

Interesting. I dont think I've had uACR but I had a recent urinalysis that was all normal, including no protein in the urine.

Quote

As to the ACE/ARB meds you are not the first person that has issues with the meds. i see complaints all the time. I bailed on the ACE a while back but now i take a low dose. we will see how this goes.

That is really interesting. What kinds of symptoms do you see people talking about, and what side effects did you have, if you don't mind sharing? Some of my symptoms were not typical & my doctor was surprised - she believed me, but had never heard of those side effects before - so I'm very curious if other POTS, EDS, and/or MCAS folks responded like I did.

Posted
11 hours ago, Pistol said:

Often people become anxious during the test and that causes their HR to be elevated to begin with. 

Yeah that's what was going on with me, I think. Anxious, and also felt lightheaded and loopy from the dehydration and fasting, since they tell you not to eat or drink anything for 4 hours before the test. Mine was 11:30am so I got up at 7:30 and had a little water but other than that, had had no food or fluids for 12+ hours by the time of the test. I could barely walk straight. My pulse and BP were super high for me throughout the whole test. I figure the dehydration caused them to be so high, but I don't know if that's a known effect. When I ask doctors about it they kind of shrug and have that silence that either means they don't know, they don't want to tell you for some reason, or they think you're crazy.

When they tilted me upright, I got a noticeable adrenaline rush, it felt like I'd just downed an espresso. I felt way less sleepy and lightheaded. I got more alert and felt my heart pounding. But evidently my HR didnt change at all.

When I mentioned to the nurse the adrenaline rush feeling, she just gave me a little tight-lipped smile and The Silence(TM). Afterwards I asked if having an adrenaline rush when tilted upright was normal and she said yes. Is it? When I google it, all the results I get are about POTS or other dysautonomia... I'm no medical professional though, I don't get the whole picture with my internet research, obviously.

Posted
11 hours ago, SeanEgg said:

That is really interesting. What kinds of symptoms do you see people talking about, and what side effects did you have, if you don't mind sharing? Some of my symptoms were not typical & my doctor was surprised - she believed me, but had never heard of those side effects before - so I'm very curious if other POTS, EDS, and/or MCAS folks responded like I did.

besides the well know Lisinopril cough and other laundry list of complaints the headache and tinnitus comes up all the time. for me the headache is very distinct. headaches (pressure) and dizziness and/or lightheadedness. Strange sensations not like a normal tension headache. It varies in intensity throughout the day but never goes away completely. some mood changes and brain fog happens to me as well. not sure how else to explain it. i think i have used it's like taking snake venom. even with this current go on a low dose the headaches started on the first day. if it does not clear up in a few more weeks i will stop the med.

ARB when i tried them. both times i did not last long as i would break out in hive/rashes and would get dark colored urine that was smelly.

Posted
12 hours ago, SeanEgg said:

When they tilted me upright, I got a noticeable adrenaline rush, it felt like I'd just downed an espresso. I felt way less sleepy and lightheaded. I got more alert and felt my heart pounding. But evidently my HR didnt change at all.

@SeanEgg Yes, this is normal but in POTS patients it can be overstimulation. Anytime ANYONE stands up there is a dump of norepinephrine that occurs to constrict the blood vessels and increase HR to pump the blood up to the vital organs.This usually occurs within the first minute of standing and then homeostasis is created ( meaning the body adapted to the upright position ). Most people are completely unaware of this mechanism. In POTS the HR remains elevated even after a few minutes anytime we stand. 

Posted
17 hours ago, MikeO said:

besides the well know Lisinopril cough ...

...some mood changes and brain fog happens to me as well. not sure how else to explain it. i think i have used it's like taking snake venom.

...ARB when i tried them. both times i did not last long as i would break out in hive/rashes and would get dark colored urine that was smelly.

Good to know about Lisinopril, I will have to avoid that one as I have a very reactive throat/sinuses and a whole bunch of things set off a cough for me.

I took the ARB Olmasartan and felt very sick for ~3 weeks, which passed, but some of the fatigue and lethargy remained, plus depression. My anxiety level was lower, which was nice, but I also was unmotivated and didn't really care about anything. Also, abruptly decreased sex drive. That and depression don't seem to be advertised as a side effect anywhere in the materials or on medical info webpages, which suggests they are not common side effects, but they were very real for me. My doctor advised me to take a 2 week break and see if I felt better. I did, so we knew it was the drug, and I quit.

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