My Ttt Results

[mvdula]

I have my TTT in Ohio last week, and Dr Grubb did confirm POTS based on the results. The results do not seem extreme though (even though my symptoms can be extreme when provoked). Can anyone relate to my #s?

Resting bp 108/78 hr 70-80

Tilted @70 5mins bp 138-93 hr 90s

Tilted @70 10mins bp 129/77 hr 80s-90s

Tilted @70 20mins bp 115/70 hr 90s-110

Tilted @70 Isuprel 5mins bp 127/60 hr 130-140s

Tilted @70 Isuprel 10mins 114/62 hr 140-150s

[Ernie]

Hi,

Mine are very different.

[mrsdavidson8605]

I had a TTT done locally before I was actually diagnosed with POTS. I didn't even have the medication, I passed out after 14 minutes. Not sure the actual numbers, but I know my BP and Pulse soared then dropped. At one point my BP was 70/40... hope that helps..

[MomtoGiuliana]

I think going from 70 to 150 bpm heartrate is fairly "extreme". This looks similar to my results when I was very unwell and had a TTT. My bp and hr increased on upward position up to 140/90 and 160 bpm or so (my supine hr that day was 80 bpm). Then the bp went down but not to anything lower than 110/70 as I recall. I didn't pass out during th test but I remember feeling even crappier afterwards.

[doctorguest]

Quite honestly, your TTT numbers are not that impressive and may in fact occur in someone who is healthy, without POTS. Isuprel increases heart rate for everyone, so a HR of 150 after infusion is not all that unusual. Essentially, after 20 min of tilt (without medications), your heart rate went from 70-80 bpm to 90-110 bpm - hardly impressive and in fact, not more than 30 bpm that is required for a strict criteria of POTS diagnosis. Regardless, if you are symptomatic and everything else "fits", you may still have "mild" POTS, even with these unimpressive numbers.

[mvdula]

Thank you, doctorguest. That was my feeling too. Here's why I asked. I am second guessing my Dx because: normally, I feel fine. I sleep fine, get up, drive kids to school, etc. BUT if I exert myself: cleaning the bathtub (sitting next to it) , sex (sometimes - even w/o much exertion), heat, bending over too long, anything that I have to work hard at or gets my body working hard/excited - even emotional stress - sets me off in this awful EPISODE/ATTACK. These episodes involve the following in some combo: tachycardia, weakness, shakiness, revved up feeling, extreme fatigue, general sense that I need help/feel wrong/dying (at worst). It is as if I passed some threshold and my body doesn't know how to turn back - keeps going at that pace - but I DO NOT understand the weakness/fatigue I feel simultaneously - I doubt it is from the tach bc when I take my hr/bp - it is somewhat normal but hr usually 114 or so sitting still. Once they start (have to be very careful what I do to avoid), they go on for 10mins-1hr intensely, then get somehwat better but last another hour or so at a lower level. Then I am back to normal generally. I cannot lie down usually bc it is so disturbing - can't sleep - usually walk around and sit down/watch tv intermitently until it passes. But, for the rest of the day I am depressed/worried, etc (more than a day if attack was bad) - my husband always asks what's wrong bc I am so quiet (normally very talkative). I have had cortisol tested - morning cortisol was a bit low 11.2 (range 8.5-22) but ACTH stim test they said was normal (don't have #s). I still wonder if somehow maybe my pituitary doesn't signal adrenals to make extra cortisol when needed like exercise - so that's why I feel that way - but passed the test??????? just a thought. don't know results of my catecholamine tests or epinephrine, dopamine, etc - I should know that tomorrow - since Bev thought maybe I am hyperadrenergic (but no family history, etc) - think she thought that bc of these attacks. I have no dizziness, lightheadedness or passing out. I have occasional chest pain and other minor symptoms - but the only thing I really need treatment for is these attacks. They are ruining my life - I can avoid things, but it is no way to live and the attacks are very scary! Thanks for any thoughts anyone can offer! Oh, and they are not panic - I have had panic attacks - the few I have had were later in the day after these 'POTS attacks?' bc I am so scared. Panic feels a lot different - is less scary, and doesn't last as long! I wish it were just anxiety!

[mvdula]

forgot to add something - also, after I have one of these 'episodes' (had one yesterday - not the worst ever though), i do not sleep well. I am usually a very good sleeper. but last night, i woke up every 1 1/2 hrs - somewhat sweaty, left arm felt funny/warm/tingly, just not comfortable. i have never had trouble sleeping in my life - except after these incidents. what is going on with me??????????? i can't take this anymore.

[cardiactec]

I agree with doctorguest. actually, at the hospital I work at, more and more cardiologists are looking into discontinuing the administration of Isuprel during tilt table testing because we've found that there are far too many false positives that come with isuprel.

for my own personal experience, and i know i'm a bit of the extreme, my HR's supine were 95 and within a minute of upright tilt were 160, and after 20 minutes, were well above 180. they wouldnt even give me isuprel standing, and were hesitant to give it to me supine because of such a dramatic HR response and symptom response to upright tilt.

hang in there and i hope your symptoms improve.

[mvdula]

seems to me maybe i have more of an endo problem? i normally feel ok, but my body canNOT deal with stress at all. any thoughts are welcome...i have tried to research, cortisol, etc imbalances but it is very complicated.....my 'episodes' are horrendous and feel life-threatening, but rest of the time generally ok - does this really sound like pots?????

[Resting]

Maggie,

I have a lot of the same symptoms as you related. I have not had a TTT done. I have auto-immune thyroid disease and the cardiologist and gyn both say they believe I have another endocrine/auto-immune issue going on which has not been diagnosed as yet.

I am not an expert, but your morning cortisol looks too low to me. I know that it is in the normal range, but that doesn't mean it's not causing you symptoms, etc. I did saliva testing and my cortisol is right near the top of the range in the morning and then drops down under range for the noon and afternoon readings and low normal at midnight. So, I do have some adrenal issue. Getting that treated is not necessarily easy.

I know that there is a very specific way that the ACTH stim test should be conducted and a base value that you should start with. If I was you I would research that more.

All that being said, I really hope that you get this figured out soon and can get the appropriate treatment so you feel better.

Cindy

[mvdula]

Thanks to eveybody who replied. I am just at the end of my rope - cried all morning...trying to get endo to call me back. something is just nto adding up with the pots dx......

[mkoven]

I don't know where you are located, but I've started seeing Janice Gilden, an endocrinologist in chicago with an interest in autonomic dysfunction. She ran a whole bunch of bloodwork on me to make sure there was nothing endocrine going on. Very careful, thorough, experienced, human.

I have not done a tilt table test. But given that my bp can drop 30-40 points within a minute of going from sitting to standing-- (not always, but often), no one has pushed the issue. My pulse might go up some, but it's really the bp drops that seem to be my issue-- so more ncs than pots.

I definitely feel that my symptoms are affected by hormones. I have big flares after ovulation, and premenstrually through my period. I'll suddenly feel super anxious when all I"ve done is stand up...hmmm. And none of this was really a big deal until my late 30s. But since "hormone" here means reproductive hormone, and the pill is contraindicated in someone like me (complicated migraines), there's little we can do.

Dr. Gilden did test for thryroid, adrenal, catecholamines (sp???), B12, D, blood sugar, and much more-- things which she said can be out of whack as cause or effect of autonomic problems. I'm going for a sleep study on Tuesday. So it's worh finding someone expert enough to know what to look for.

[mvdula]

Thanks for the info. I have had some of those tests through my endo - but don't think he really cares much. I may look into Dr Gilden.

[JenniferInOhio]

Hi,

I had 2 TTT. The first, I passed - it lasted only 20 minutes.

The second, I did not show signs of POTS until about 30 minutes into the test. At that point, my heart rate started going higher and my blood pressure dropped too. High enough for a definite POTS diagnosis and also orthostatic hypotension. Maybe you needed to be tested a bit longer.

I did not have meds. No way they were injecting that stuff into me

[masumeh]

from the things you said about what makes you tired and how you feel when it strikes, you really sound like a POTS patient to me. Bending over....sex....these things are SOOO POTS triggers....and I am not aware of any other disease that has those provocations.

The fact that you can function sometimes and not others also sounds like POTS. I am classic for POTS, with no other disease explaining my difficulties. And I can sometimes mop the kitchen floor, go shopping, play with my daughter, etc. Other days, I cannot get out of bed without feeling like death walking. That's the way it goes. Sometimes the flip happens very suddenly.

It helps to know your triggers and avoid them. Like, it helped me a lot when I realized that I get tachy'ed-out when I lift my arms over my head/shoulders level. It took several years (Dodo that I am) to realize that this was happening.

Why don't your doctors do a TTT without the injection? Then they cannot blame the abnormal numbers on the drug effect.

It's EXTREMELY frustrating to be sick and not have a diagnosis. I was sick with POTS for 4.5 years before I got my diagnosis, and although it came with mixed feelings, it really helped me move on.

Hope you get clarity soon.

[cardiactec]

I think a POTS diagnoses is confirmed by having (if you want to get strict about it) a thirty beat point increase or more from supine to stand with accompanying symptoms within TEN minutes or less. from the vitals maggy provided, she was tilted up to 20 mins without isuprel injection and hr's only approached 100's from a supine baseline of 80's.

magg, personally i think, after seeing your signature, you might look into a reoccurance of your PSVT or another rhythm problem as being the cause of your symptoms. do your symptoms you're experiencing now feel the same as when you had PSVT? PSVT can be triggered by emotional stress, exercise, sex, etc. and sometimes it is very difficult to differentiate between true PSVT, POTS, or just a "normal" tachycardic variant from exerting yourself.

[mvdula]

No, when I had the PSVT - I could feel my heart go from normal to the 250 or so pbm suddenly. I always felt absolutely fine though! Tolerated it with no problem.