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Hyperadrenergic Pots And Dr. Grubb


kitt

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Dopamine is one of the catecholamines, along with norepinephrine and epinephrine. Norepinephrine is the most important as it has been used to define hyperPOTS >800 or 1000, depending on the source. The metanephrines are used to rule out pheochromocytoma. In hyperPOTS, the metanephrines are much less likely to be elevated, despite elevated catecholamines, but in pheochromocytoma, both are usually elevated.

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Kitt, Like Issie, I believe the norepinepherine is the key to Dx hyper pots. I had to ask for a serum Catecholemine on the TTT at Cleveland Clinic. They did it just like Hyperpots suggested. At that point my supine NE was just a couple of hundred and I didn't make it upright long enough to get to 10 mins where they like to draw it again. At about 8 mins (when my TTT ended) I was just shy of the 800.

Last mo however, during a lab draw for mast cell testing I had a NE of 650+ taken in an almost supine position. I say this to point out that these levels can fluctuate a lot - thus the need often for multiple tests bc you have to catch the effect of the mast cells degranulating/ or NE levels rising. This is why the best place to test for hyper pots is a serum draw on tilt bc it is so controlled.

Not sure if that made sense- deep in the fog tonight.

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Hyperpots, thanks, I learned in my research since posting about dopamine being one of the catecholemines. I also learned that metanephrine is done to rule out pheochromocytoma. So you answered a question it took about an hour on Google for me to figure out.

That's the beauty of this forum. An amazing amount of good information.

Kelly, I see your point as to why having the blood draw done on a TT is optimal, but think that will happen only at Mayo and other big clinics where they have a lab in house.

Am thinking that instead of going to Quest, I should call the hospital, and see if they can do the test in the supine position and then standing.

My question to all of you. Why is it necessary to have the test done both ways..To see the differential? I just want the dx to be corrected from Pots to Hyper, so wouldn't a standing epinephrine test be enough?

Am curious why the mast cell test are always done in supine position? That's interesting. Have read that it the results vary a lot.

To my knowledge Quest lab doesn't even have any rooms for patients to lie down in.

Am going to call the cardiologist's nurse, but don't want to 'correct' the cardiologist other than to mention the standing part of the test, but if someone explains the 'need' to do it both supine and standing, I'll suggest both.

The cardiologist I'm seeing has treated IST (dysautonomia involving the sinus), but I'm sure he's never treated a case of hyper pots before, but he 'gets it,' Just want to be respectful about 'suggesting' how he order tests. I've heard so many horror stories about cardiologists telling patients with disautonomia, 'your heart is fine!'

I know everyone here has hyper pots, but am wondering how many have hyper mca pots?

Thanks again. Honestly, If not for this forum I would have gone to Quest, and they would have drawn the blood with me sitting in a chair, and I'd be back at square one.

This is an amazing resource.

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They base your DX for HyperPOTS on what your standing NE levels are - my test at Mayo's range was anything above 650 was high - I was over 800. They also want to see if your NE levels are high while sitting - if so they would need to check you for a pheo.

I don't know what you mean about testing mast cells sitting. Mast cells are very hard to detect. They will check some of the chemicals that the mast cells put out when they degranulate. This can be done within one hour of an episode and then you are supposed to start a urine collection to see if the chemicals are in your urine. The only other ways are a bone marrow biopsy and now Dr. Afrin is doing biopsy's from tissue in the esophagus. I'm HyperPOTS and have MCAS and EDS.

Issie

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They base your DX for HyperPOTS on what your standing NE levels are - my test at Mayo's range was anything above 650 was high - I was over 800. They also want to see if your NE levels are high while sitting - if so they would need to check you for a pheo.

I don't know what you mean about testing mast cells sitting. Mast cells are very hard to detect. They will check some of the chemicals that the mast cells put out when they degranulate. This can be done within one hour of an episode and then you are supposed to start a urine collection to see if the chemicals are in your urine. The only other ways are a bone marrow biopsy and now Dr. Afrin is doing biopsy's from tissue in the esophagus. I'm HyperPOTS and have MCAS and EDS.

Issie

Issie, thank you for your answer. All of these responses have been incredibly helpful.

I was/am having brainfog and mentioned having the mast cell testing done in a supine position because I think I misinterpreted Kellysavedbygrace's answer.

She wrote:

Last mo however, during a lab draw for mast cell testing I had a NE of 650+ taken in an almost supine position. I say this to point out that these levels can fluctuate a lot - thus the need often for multiple tests bc you have to catch the effect of the mast cells degranulating/ or NE levels rising. This is why the best place to test for hyper pots is a serum draw on tilt bc it is so controlled.

So my mistake.

I'm guessing that the test for mast cells everyone is referring to is a tryptase test? My instructions were to have the blood drawn during the time when I'm have an allergic response or episode.

I don't know about everybody else, but when my eyes are itching and tearing and I'm rubbing them, the last thing I'm thinking is, 'Oh, now would be a good time to drive to the lab and have blood drawn.'

So I'll call the hospital lab AND Quest tomorrow and ask them both how they test for norepinephrine and blood cortisol. Standing, sitting, supine, etc...

I've Googled 'serum catecholamine test' and it includes dopamine and there are differences in how the blood is drawn! So I guess the order needs to be specific! My point is illustrated on this site. http://labtestsonline.org/understanding/analytes/catecholamine/tab/sample

There is another thread on dinet about 'what else can go wrong with my body' or something to that affect. I'm not entertaining responding but all I can say is...'Oh, many, many, many things.'

Pots, and now adrenergic pots and most probably mca adrenergic pots as well as mastocytosis are just newcomers to an

ever-growing group of immune, neurologic, endocrine, bone, and pelvic diseases by body is juggling.

So I'm trying to keep up with not just the doctors appointments but my own understanding of what I'm being told.

As everyone here who has helped (Tremendously!) knows.. being an informed, educated patient takes a lot of time and energy, so thank you for your patience and sharing.

All of the lingo and specifics are familiar to most here. It's all new to me, and I'm trying to make sure the tests are done correctly. Don't want to waste time, energy, and money seeing specialists by being a 'sheep' and just going through the motions.

As I said, if it weren't for the help of all of you, I would have gone to Quest with this lab order and had my NE levels done (along with cortisol and tryptase) while sitting, and then gone to see the cardiologist at the end of the month for nothing...

So I thank each and every person who has/is helping me on this journey. I hope I can return the favor.

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Hi, going to chime in! I have hyper pots diagnosed by Dr. Grubb. He suggested my cardio "she get supine and upright serume catecholamines done which consist of norepinephrine, epinephrine and dopamine levels". Mine rose from the 400s to 1000's. Which supported his diagnoses of hyper pots due to small fiber autonomic neuropathy.

If you look up labs and catecholamines, it will tell you how to prepare for the test, includes avoiding some foods and medications. I had mine done at a sonora quest lab and they did have a room I could lay down in. It is important to be very quiet and still during the first part and try to be mellow in the hours before getting to the lab.

Also Dr. Grubb has several articles about symptoms of hyper pots that have been posted here, or you can google his name, hyperandregenic symptoms and the article should pop up. He recently has also found a mast cell reaction cause as well.

Mainly though my symptoms were are significant rise in bp along with heart rate. You can feel jittery, break out in a cold sweat on your brow, feel fatigued on standing, to name a few.

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Hi, going to chime in! I have hyper pots diagnosed by Dr. Grubb. He suggested my cardio "she get supine and upright serume catecholamines done which consist of norepinephrine, epinephrine and dopamine levels". Mine rose from the 400s to 1000's. Which supported his diagnoses of hyper pots due to small fiber autonomic neuropathy.

If you look up labs and catecholamines, it will tell you how to prepare for the test, includes avoiding some foods and medications. I had mine done at a sonora quest lab and they did have a room I could lay down in. It is important to be very quiet and still during the first part and try to be mellow in the hours before getting to the lab.

Also Dr. Grubb has several articles about symptoms of hyper pots that have been posted here, or you can google his name, hyperandregenic symptoms and the article should pop up. He recently has also found a mast cell reaction cause as well.

Mainly though my symptoms were are significant rise in bp along with heart rate. You can feel jittery, break out in a cold sweat on your brow, feel fatigued on standing, to name a few.

There's no question about the correct procedure for doing this test. I agree with all that have had it done properly.

I've called Quest labs many times, and get a recording, "we can't take your call. Leave a message.' I did. They never called back.

I called the local hospital, and the person that answered the phone explained that Yes!, this is a complicated test. We have a procedure code we follow. Yes, if you come we will follow that code, and btw, you can sign a 'paper' and get the test results directly. I'm in.

So thank you! for chiming in. My concern was that I DID NOT WANT to contact my cardiologist and saying, "this is not correct, do it my way." Don't want that, because I'm dealing with a brilliant doctor so want to cooperate and not be problematic unless it's called for.

Thank you. I'm going to go to the hospital within the week, and will report back. (Have researched and found a mast cell disorder specialist in town...Pays to live in a big city.)

Thanks to ALL who have helped and put their two cents in! This has been my go to 'place'...Kudos to all!

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Yesterday, I called the cardiologist's office and told the nurse I was going to have my blood drawn at the hospital tomorrow, (this morning), and mentioned there was nothing on the order about having the blood drawn while standing. She said, "The doctor is in surgery today. The hospital should have a procedure code, but if you have a problem, call me back tomorrow, and I'll speak to the doctor."

Went to the hospital this a.m., fasting, and signed in etc...

First thing that happened, I was told to sit in the chair to have my blood drawn.

I explained I was supposed to be standing for 15-20 minutes before the blood draw. She said, "It doesn't say that on the order."

Explained that it was for the NE part of the test.

She huffed and puffed, and finally said, "Okay, go walk around the hospital for 15 minutes and come back." I did.

When I came back, the first thing the next person said was, "okay, sit in the chair and put your arm here"...I explained I needed to have the blood drawn standing.

They did it correctly, but this is exactly why it's important for everyone to educate themselves on something as simple as having blood drawn.

Even after calling the hospital etc...I still was still told to sit down. (Twice.) Amazing. Be proactive!

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Arizona girl, I mentioned the supine portions of the test at the hospital, but I assure you, THAT was not going to happen. There was a bed in the room, but only one room and other patients waiting.

I absolutely understand the purpose of supine to standing...So they can see the differential, but the most important part to the cardiologist at this point is to see how high the NE goes.

If anyone has a link to the correct procedure, please paste it. I'll print it out and give it to the cardiologist.

I'm almost 100% certain the cardiologist I see knows this, but he didn't write the order. He gave the order to his nurse and she had it typed up.

At first tryptase was not on the typed order. I had to track the nurse down and mention that the cardiologist had said he would order that as well, and the nurse added it as an addendum.

I'm just glad I got the test standing. It's a nightmare to think of going in there and having the blood drawn sitting and being told, 'your NE was normal'

Btw, when I called the cardiologist's nurse yesterday she said 'Why does it need to be done standing?' I reminded her that doctors had been measuring my heart rate and BP for years sitting, and that's why I'd never been diagnosed with pots. I reminded her that having those measurements done sitting is the 'correct protocol.' That was a lightbulb moment for her.

Bear in mind my cardiologist did not list all catecholamines. He also added metanephrine to check for a pheo, and also added cortisol, and tryptase.

As a thought..I actually wish this was a pheo. Unlike pots it could be removed.

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Arizona girl,

He's done a TTT, a 2 week holter monitoring, echo, stress echo, prescribed a bb, (with horrid results) and he now believes it's hyper pots with mca. He's been clear that he believes it's hyper-pots with mca, due to my response to bb's and the constant flushing.

My flushing started after all the testing he first did, and almost immediately after starting the bb he prescribed, (probably because bb's cause mast cells to degranulate?)

Think he's ruling out the pheo, which he should do, just as he first ruled out IST, before he confirmed the pots dx I'd already gotten from an immunologist. (IST is another form of dysautonomia, called Inappropriate sinus tachycardia), and apparently it's not uncommon for people with one to be misdiagnosed with the other.

He's been very through. Think the reason all catecholamines weren't measured has more to do with his nurse than him.

Again, I just feel very fortunate to have found this cardiologist. His credentials are wild...What he's done, and where he's done it. Amazing and impressive.

He really does understand dysautonomia, even one as rare as hyper pots with mca. (His nurse though is not used to seeing much dysautonomia though.)

Like lots of us, I've experienced some horrible doctors with other 'orphan' diseases I have.

That's why I said, I actually would prefer a pheo...Like you say, it's a curable condition. Wouldn't we all rather have that?

How do you manage your pots? I've learned so much from this forum! Thank you for that. I'm very appreciative.

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