“How would a doctor determine if I have Hyperadrenergic POTS?”: All About Catecholamine Testing in POTS

To find out if it a patient has Hyperadrenergic POTS, specialized doctors typically order an endocrine test called a Catecholamine Blood Test. I had my test performed at Mayo Clinic’s Autonomic Clinic in Rochester, Minnesota. Want proof? Here is a glamor shot taken just prior to the test:

Okay, time to get serious! The Catecholamine Blood Test measures the patient’s dopamine, epinephrine, and norepinephrine levels.Β It is important for doctors performing the test to be aware of the importance of inserting an IV line then having the patient resting supine in a quiet, dark room prior to the supine blood draw for the most accurate results. Here’s an explanation of the proper procedure:

1) An IV line is put in place in the patient’s arm.
This is to draw blood later without triggering the release of catecholamines in reaction to the poke. Even if someone doesn’t mind needles, the body will release a bit of stress hormone in reaction to having a needle stuck into it.
2) The patient is left in quiet, dark room for 30 minutes. The patient should be supine, should be alone, and should not look at cell phone, magazines, or be listening to music.
This is to let the patient relax and let catecholamine levels come down to what will be used as the supine baseline level.
3) The technician will quietly come in the room and takes a blood sample through the IV line without speaking.
4) The patient is instructed to stand up and/or walk around for 10 minutes. Some centers have the patient remain upright for as long as 15 minutes.
5) Another blood sample is taken from the patient through the IV line, the IV line is removed, and the patient is free to go.

The doctor will compare the patient’s supine catecholamine levels versus the upright results to see how much the norepinephrine levels increased. My doctor at Mayo said it is normal for it to double and there are also lab reference levels available for what is “normal”. The increase in norepinephrine is not all the doctor will look at. High starting levels of certain catecholamines can indicate other problems such as the body not reuptaking norepinephrine correctly, however I’m no expert in that area.

Different doctors have different definitions of what qualifies as Hyperadrenergic POTS. Some say you need, POTS, hypertension, and high upright norepinephrine levels in order to meet criteria. Others say the only necessary symptom, aside from a POTS diagnosis, is abnormally high norepinephrine levels upright compared to supine. My opinion is the only qualification should be high upright norepinephrine levels. I don’t understand how it makes sense to look at an abnormal lab result, indicating excessive norepinephrine release during upright, but not supine posture, and conclude it indicates nothing simply because the patient doesn’t have high blood pressure. I think better labels would be Hyperadrenergic POTS with Hypertension/Hypotension/whatever. If you break down the word hyperadrenergic, my theory makes sense as it breaks down to mean quite literally, abnormal excess release of an epinephrinelike substance.

Hyper
:
prefix
1. above, over, or in excess hypercritical
2. (in medicine) denoting an abnormal excess hyperacidity

Adrenergic: adj.
1. Activated by or capable of releasing epinephrine or an epinephrinelike substance, especially in the sympathetic nervous system.
2. Having physiological effects similar to those of epinephrine.

If you don’t know much about norepineprhine and epinephrine (AKA noradrenalin and adrenalin), here are some resources that will quickly inform you without you needing to read pages and pages. For very easy, simple reads, click here (eHow) or here (Livestrong). If you like some technicality but still want a quick read, here is a short blog post on it. If you want a technical read with medical terminology, here you go (CV Physiology). I know eHow and Livestrong aren’t held in high regard, but the articles I linked are accurate from what I can see and are much easier to read and understand than a journal article!

Now, back to POTS subtypes! This article from Vanderbilt’s Autonomic Center asserts POTS subtype isn’t as important as previously thought in pointing to the underlying cause of a patient’s POTS. Rather than being thought of as pointing to a subtype, Vanderbilt believes testing should be thought of as pointing to a characterization which can be used to guide initial treatment. Part of the authors’ support for this approach is the fact different doctors use different criteria to diagnose Hyperadrenergic POTS which may be counterproductive for a patient going between different doctors who do not define a subtype the same. Several examples of how various doctors conclude a patient has Hyperadrenergic POTS are given. Some are way out there (to me anyway) such as just because a patient does not show any neuropathy or nerve damage (negative QSART), s/he has Hyperadrenergic POTS. I promise you, no reliable autonomic center would identify Hyperadrenergic POTS in this manner.

My concluding thoughts… I don’t really care if the doctor I am seeing thinks of my abnormal catecholamine test results as indicating a POTS subtype or simply as a characterization of my POTS. With how little is known about POTS, it was nice to have had QSART and Thermoregulatory sweat tests confirm I do not have any nerve damage or neuropathy going on, and catecholamine testing performed to confirm I do have adrenergic involvement. It also comforting to know my testing was performed with the highest standards in mind. I may not know much about what is going on in my body, but least I know one thing; my body’s norepineprhine levels increase 5 times when I go from supine to upright. I also know I do not have nerve damage which means this may be reversible. So, I actually know 2 things. πŸ™‚

Additional Resources
Mayo Clinic’s serum catecholamine reference levels for both supine and standing
Scroll down to “How to Prepare for the Test” for a list of foods and drugs to avoid prior to testing
Catecholamine testing for POTS in scientific literature (one article of many out there) — scroll down to Table 3 “Routine Evaluation of POTS” (Thought I’d throw it in here in case someone is trying to convince a local doctor to perform testing and needs empirical support)
My experience with catecholamine testing at Mayo — scroll down to “Endocrine Testing”

41 thoughts on ““How would a doctor determine if I have Hyperadrenergic POTS?”: All About Catecholamine Testing in POTS

Add yours

  1. I had written a long reply out and then my internet went out and I lost it.
    I had the same test done at Mayo, but I don’t think it was done accurately–not by the fault of the doctors/nurses. I had a major migraine that I had gotten while doing a nerve conduction study. Those rooms that you lay in… the curtain covers the window almost all the way to the ceiling but there’s about a foot gap where the light comes through from the outer room. They told me that it was very important to relax and rest. Well, the lights in the room were off and I had my eyes closed, but the bright light from the outer room was shining through that gap and even with my eyes closed, I could ‘see’ it and it was making me so ill. By the time the 30 minutes were up, I was almost in tears and incredibly nauseous. I’m not saying that I think I have hyper POTS… all I know is that I have POTS. But I do wish the test had been done at a different time, because I don’t feel my results were totally accurate. But in the end it doesn’t seem to matter much as far as treatment goes.

    Like

    1. What an awful experience! I’m so sorry this happened to you. 😦 It would bum me out to have gone through all of that testing and not know if it is accurate. From what I understand, the baseline supine levels would have been effected, but the doctor still would have been able to accurately see how high the levels went in reaction to upright posture compared to supine levels. Did you let the ordering doctor know what had happened?

      In case anyone is reading this and about to go to Mayo, I have a suggestion if something such as this happens to you. As soon as it is possible, go the clinic of the prescribing doctor. In my case, it would have been Dr. Fealey in Neurology. Ask to speak to his nurse or ask if the receptionist could get a message to Dr. Fealey. Explain your concerns about the accuracy of the testing based on your symptoms/experience and ask if a repeat test would be recommended or possible. Maybe even write it down ahead of time so anxiety or brain fog won’t get in your way of being taken seriously. Using this method, I had luck getting in touch with a doctor with questions about a nurse practitioner telling me different things than the doctor had.

      Like

      1. It was definitely not a fun experience. I don’t remember if the doctor knew or not. It was a last minute test, not one that was scheduled before I got there. I’ve been back to Mayo 4 or 5 times now, but in all the tests I’ve had to repeat, that has not been one of them. If I ever go back, I may bring it up and see if the test can be redone. It may not show anything different, but I just don’t think it was good circumstances for a test like that. I was SO happy to get out of there that day (it was the last test of the day–had been going from early morning to late afternoon) and get back to the hotel. I slept off the migraine and then went for supper and my day was better then. Now that I think about it, I can’t remember if this test was the first or second year. Maybe it was the second year when I saw Dr. Sandroni (who was a neurologist and autonomic specialist). Both years I saw my neurologist as well, but only saw Dr. Sandroni the second year. Seems like she would be the one to order the test. Who knows.. it was back in 2010 or 2011 and my brain doesn’t like to think back that far anymore. πŸ™‚ I’m glad that your experience with this test was better than mine, and if I have to redo this test and wind up in a similar situation I will definitely heed your advice and get in touch with my doctor. πŸ™‚

        Like

  2. Thanks for this clear info. It makes me see I was right to say I didn’t want the tests even though I am pretty sure I have hyperPOTS – in fact I think the Cardio thinks so too, but there’s no way the NHS has the skills or time for this kind of thing and I just wouldn’t get the test done properly so i would never trust the results.

    One small study has been done on women with fibro (12 women if I remember rightly) giving them L’dopa in drug form – the drugs used to treat Parkinsons and showed good results.
    If fibro is hyperPOTs as Woods et al’s research suggest then perhaps we need to look more closely at Parkinson drug treatments
    But as I already have a ton of meds to take every day I can’t face looking into this at the mo.

    I am glad you have no nerve damage. I hope that can be avoided.
    Take care Jackie
    Shellx

    Like

    1. Thank you for the reply and all of that information! I didn’t know some researchers believe fibro is hyperpots. In my case, I don’t have pain the way a fibro patient does, so I’m lucky with that.

      I think it would be interesting for someone to conduct the catecholamine test on the same POTS patient twice. Once the way I described it, then once with the patient not in a dark, quiet room, maybe even being stuck with a needle for the blood draw instead of using an IV line, and see how the results compare. Maybe there’s no need for such hyper-vigilance, but I tend to trust Mayo!

      I’m sorry to hear you don’t have access to this testing. 😦 Maybe if you ever change your mind and want to know for sure, you could share this post with your doctor and s/he could supervise the testing. It’d be quite easy for any doctor office if they knew what to do.

      Like

  3. Great post, Jackie. I’m getting my first tilt table test in a few weeks and they’re also doing a sweat test. The only thing I know about these tests is from your blog, so thank you! I’m nervous. Any advice for those tests? Anything to avoid doing or consuming beforehand? It’s scheduled for three days before my period, so I fear I’ll be in rough shape. X

    Like

    1. If I remember correctly, you stopped taking almost all of your supplements, right? For the TTT, if it is safe for you (read: consult your doctor πŸ™‚ ) I think it is stop any medications or supplements that effect your heart rate or blood pressure. CoQ10 is a popular supplement that effects blood pressure. You’re wanting to know what your body is doing when left to its own devices. What type of sweat test? Is it a thermoregulatory (they put powder all over you and stick you in a chamber) or a QSART (electrodes)?

      Like

      1. Wow, I love having you as my friend! Yes, I stopped all supplements (you remembered!). Just this week I started taking some vitamins again because I felt so crappy (A, Bs, C, D and fish oil. Taking mag every night). I’m so glad I asked – I’ll make sure to stop everything again the week before. I’ll call Monday and find out what sort of sweat test. Thank you!

        Like

        1. Aww, you’re sweet. πŸ™‚ I love having you as my friend too! The magnesium and fish oil are definitely ones I’d stop prior to testing. It is the worst looking back at a test and wondering if it would have come out different if it weren’t from “x” and weighing the pros and cons of trying to get it repeated.

          I’m guessing the sweat test is a QSART which is good for detecting large fiber neuropathy and is quick. The thermoregulatory sweat test is the gold standard (as far as I’ve read anyway) for detecting small fiber neuropathy, but most (including myself) find it tortuous and not many places have the equipment to conduct it. I’m so happy for you that you are getting all of this testing done! Hopefully it provides some insight as to what is going on in your body.

          Like

          1. The tech just called me back and you were right – it is the QSART. She said I would be there for three hours and I can’t eat or drink for two hours prior- say what?! Over five hours without food and drink?? My blood sugar will tank, my blood pressure will tank. Eek! Also, no caffeine, which scares me. This whole thing scares me. I assume I should continue taking my thyroid meds, but I’ll try to stop all else… Thanks for the help!

            Like

            1. She said you will be there for 3 hours for the QSART alone? Are they doing the TTT while they’re at it?

              I agree on keeping up with the thyroid meds. My sister, aunt, and Mom all take them (don’t have thyroids) and I know how bad it is without them. My days at Mayo were rough with the eating/drinking rules, and one day, I didn’t get to eat until dinner but had to be all over the place all day. Yuck! It definitely makes what would already be miserable days even more miserable. Make sure to take something with you so you can eat ASAP.

              Like

              1. Three hours total for TTT first and QSART after. Man, I hate hospitals! I was just brainstorming what I could take with me with my crazy diet. Poor husband waiting all that time. I remember reading all about your testing and wondering how you smiled for those photographs! See? You’re an inspiration. (My thyroid is dead from ablation with radioiodine. What is wrong with all of us in this day and age?!)

                Like

              2. Aw, you’re sweet. I’m just a smiley girl! I figure it’ll suck whether I smile or not, so I smile when I can.

                That sounds like an reasonable amount of time for a TTT and QSART although I don’t think it was that long for me. It just depends on their procedures. You sound like me, worrying about your husband being bored while you’re back there being tortured. Knock it off! πŸ™‚

                My go to “on the go” snack is nuts and fruit. Also take something salty for afterwards so you can get that blood pressure up if it is bothering you. Broth, tomato juice, I’ve even resorted to just straight salt packets!

                Like

              3. That’s exactly right: nuts and fruit, good call! And some apple juice for sugar. I’m off tomatoes, but maybe I will bring a thermos of broth. Great idea! Recently, my husband has been making and freezing broth every weekend because, from what I can tell, every broth on the market has MSG – even organic ones. So, he cooks it overnight and I add a ton of salt and veg for instant soups. πŸ™‚
                I really appreciate your being there for me to bounce ideas off of!

                Like

              4. Edward and Son’s bouillon Not Chick’n is a vegan broth and doesn’t have any MSG. I LOVE it, but I don’t think it is any competition for homemade broth!

                Like

              5. Damn, I googled them and they have “yeast extract” which, as far as I’m concerned, is MSG. I stay away from that, autolyzed yeast extract, natural favors, E621 (in Ireland and England), and anything else suspect. Mind you, I’m not even sure what I react to is MSG. All I know for sure is, the worst food reactions I’ve ever had have been after eating Chinese and Thai food (not bloating etc., but really pronounced full-body swelling), so I eliminated MSG and stay away from those restaurants (and now all restaurants :().

                Like

              6. I didn’t know yeast extract and MSG were the same. Good to know! I don’t eat at restaurants often either because it is so much darn work to figure out what I can eat. I always end up with something plain and bland.

                Like

              7. There is a restaurant across the street from my house that does to-die-for coconut rice and sesame-crusted halibut. It’s my go-to meal, but I can’t have the sauce and it’s expensive and I’m sure they don’t use olive oil, but cheap nasty oil… Anyway, right now I just want a steak. I haven’t had red meat or bacon in over a month and I am CRAVING. Bacon-wrapped steak…mmmm…. ;P
                Sorry, hope you’re not a vegetarian!

                Like

              8. I’ve taken some time to educate myself thanks to you and now know more about glutamates/glutamic acid and how people sensitive to MSG can be sensitive to any of the popular ingredients that have high amounts of glutamates. It is very interesting. I avoid MSG just because it is known to have bad effects in healthy people (including making people fat) so I figure it can’t do me any good. Do you avoid foods that naturally have high glutamate content, or do you only avoid foods with man-made/extracted glutamates?

                I think you deserve the expensive halibut and am glad you treat yourself to it. It is nice to be able to just order out sometimes!!

                I was on a vegan diet (I still used leather and killed bugs etc.) for a long time (almost a year), and basically vegetarian 95% of the time before that. My whole life, I’ve preferred to not eat too much meat, but 100% eliminating it makes me feel awful! I just find the concept of eating a dead animal really gross. It’s nothing more than that. I just have had to get over it and try not to think about it while I eat. Eating some of my fiance’s bacon one day.. okay eating like 6 slices of my fiance’s bacon… then feeling a bit better the next day are what lead me to realize I felt better with a bit of meat in my diet. No matter how I supplemented, my body just wasn’t happy with beans, legumes, and quinoa solely as my protein source (soy-free here). I think it was just too many carbs for my body. I am actually intolerant to turkey and chicken, but I still eat turkey at Thanksgiving. πŸ™‚ Bacon wrapped steak sounds delicious!

                Like

  4. Great post! Very succinct and informative πŸ™‚
    I need to have the testing done, but clinically, I appear to have a sub-type of hyper POTS- hyperMCAS POTS, which involves severe flushing prior to ‘episodes’ and mast cell involvement, in really simple terms. Dr. Grubb did a video interview on this subtype that is on YouTube for anyone who wants more info. My blog has stuff, too πŸ™‚

    Like

    1. Thanks and thanks for sharing your information on mast cell activation disorders. I actually just had some tests run about 2 weeks ago checking for MCAD. I started Clariten daily to see how it effects me. I already take Singulair and feel much worse without it. I can’t wait for the results to come in and am waiting for those prior to writing about my testing experience. It is frustrating knowing just because this particular test may not show byproducts of mast cell activation doesn’t mean it isn’t going on, but I will cross the bridge when I get there!

      Like

      1. I know what you mean…it can be tricky to nail with tests, but it can be dx’d clinically by a knowledgable doc. Basically, that means you have the clinical symptoms, and have excluded other possibilities on a differential diagnosis (other crap it could be but isn’t) and you respond positively to one or more treatment protocols for it (you seem to fit that part already).
        You can also find a lot of info on my MCAD group at http://www.facebook.com/groups/207077049364043/
        Mast cells that behave badly are a pain! If you can do it, I really would consider doing the 23andMe.com testing and then run your raw data through one (or all) of the apps/tools that analyze it for things like methylation mutations. Especially if you are hyperPOTS. I’d be happy to help you with any of that, of you are interested in doing it.

        Like

        1. You created that group? I am a member and love it. Way to go! I’ve been eying the 23andMe testing. You are so giving to offer to help me with understanding the raw data. I know you don’t have much energy so for you to be willing to use some of it to help me means a lot.

          My Mom, sister, and I are having a long joint doctor appointment with a geneticist in Chicago. It’d be neat to have already done the 23andMe and take it with us to or appointment. My Mom has already seen him and he spotted her EDS 3, so we know he is worthwhile.. However it is about a year wait to see him! Are most geneticists open to 23andMe (and know how to read it) or is it something that is met with skepticism by some doctors?

          Like

          1. Thanks πŸ™‚ Since I’ve already hit the learning curve, happy to share spoons!
            I can’t say what doctors think…I suspect it varies, but 23andMe is reputable and I would think your doc would appreciate the extra info. I think skepticism is reserved more for the less educated, really…opinions may vary as to the chip 23andMe uses for testing, or things like that, but SNPs are pretty standard nowadays. I expect any geneticist would find the data useful.
            I envy that you are having a joint appt like that…I would love to do the same with my mom and sis, but they don’t really want to know (the obvious). I’m not allowed to share medical revelations with my mom, and my parents are unwilling to share any medical history with me…makes me very sad. I keep begging my dad to do the 23andMe test…on my dime…I get no response. Oh well 😦
            I hope your appointment goes well…worth the wait, IMHO.

            Like

            1. You’ve really given me the nudge to see if my mom n sis will do 23andMe along with me. My sister had POTS and like I said, my mom has EDS 3 and believes she had POTS in the 70s. There’s gotta be something interesting going on here!

              Like

              1. I agree with you!! Nudge!! It runs in my family as far back as my great-great grandfather born 1846…he developed symptoms about age 16 and had POTS with syncope (probably had NCS/NMH and MCAD issues, had spine problems and probably asthma –very well could have had EDS, too. This is my direct paternal line. Goes down to my kids (one son has POTS w/syncope and both have EDS). My maternal grandfather definitely had EDS III, and also narcolepsy, RA, diverticulitis, and other related issues. So these things run in both sides of my family.
                I found my great-great grandfather’s pension records which include affidavits written by himself and relatives describing his symptoms, etc…was super eerie! I posted it on here…I’ll get the link.

                Like

  5. Reblogged this on http://www.MyZebraSoup.com and commented:
    Very informative post on diagnosing hyperPOTS. My form appears to be a subset that includes mast cell disorder; hyperMCAS POTS. In this very rare subtype (according to a video presentation by Dr. Blair Grubb, approximately 10% of POTS patients fall into the ‘hyper’ subset, and only 10% of those patients present with the ‘hyperMCAS’ variety), an ‘episode’ is preceded by flushing and other MCAS/MCAD symptoms, which is what happens with me. I’ve learned quite a bit about interesting methylation correlation, genetically, as well. See my posts on MTHFR for more on that topic. Meanwhile, enjoy this great article by my fellow POTSie…

    Like

  6. Hi there. Not sure if you still check comments on here. My question, wondering if you have any idea – I have severe anxiety around hospitals and needles – the worst of it being an IV (If it gives you an idea, an IV was “absolutely not” in my birth plan…and my emergency c-section was the cause of my POTS). My blood pressure hit 220/120 prior to my c-section due to all the docs around me and the fact I was even in a hospital. I wanted a home birth that’s how much I hate hospitals. So 30 min of “rest” would be me laying there obsessing probably about how freaked out and angry I was to be going through any of this. Do you know how this would affect the results of the test? I can’t possibly get an accurate test when my PTSD is this bad, can I?

    Thank you

    Like

    1. Hey not the blog owner but I have the “needle phobia” so to speak. I understand the doctor and hospital phobias and ptsd, my mom has it from prior major surgeries and I have it just from some upsetting incidents and regular old fear/anxiety disorders. I would talk to your doctor who will request this test or any for pots such as tilt table. You may wnt to make an appointment with a psychiatrist for just this issue and see if an small amount of acute anti-anxiety med would be appropriate for procedures. Phobias are a valid reason to consult a mental health professional. If your doctor is active about this, they may be willing to do so (such as they might for someone with a phobia of planes who needs a single set of pills for a flight).

      You should talk to your doctors about an Emla cream prescription- if they don’t know it by name its a lidocaine/prilocaine mix cream made mostly for needles… I use the generic prescription. I *think* it would help with the IV. You put an ok amount of cream on before any procedure, wrap the arm or hand in seran wrap, and then give it 30 mins to 1 hour to kick in. You wipe it off with a paper towel, moist towlette, or tissues before the procedure. (For just a reg needle 15 can be enough sometimes.)

      There is a great website on needlephobia that explains some of the factors that go into it without getting grusome or pictures.

      http://www.needlephobia.com

      I asked for my prescription last year and am soooooo glad I did. For my entire life (24 now) I have had fainting, hyperalgesia (i.e. extremely pain sensitive), nausea, vomiting, and extra anxiety about needles (already have 4-5 anxiety disorders in addition lol). From what I can tell these symptoms lean towards vasocagal needle phobia, and likely interact with my ptsd.

      I have been careful to use the cream, the only time it hasn’t completely made the procedure 95% less bad I was not given enough time for it to work 10-15, probably needed at least 20-25 (the bloodwork was impromptu with a new doc).

      Now I have not tested this with an IV yet and I don’t know how well it would help for that. But, maybe knowing about this will help you at least a little. I always try to mention to the phlebotomists that I have such reactions, but I am using the cream. I always tell them to recomend people with needle phobia ask for it. I think the tube I have, about the size of a medium (smaller rather than large) tooth paste. I have used it for about 5 procedures and have always prepped multiple sites except the last time and the tube is still significantly full. I think it cost maybe 10$ with my insurance.

      Like

      1. Oh and do be careful keeping this (like any med) from being confused for toothpaste or in reach of kids- I am sure you do, but it’s always good to remind people (the author of the linked page stressed this)

        Like

Your turn!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Blog at WordPress.com.

Up ↑

%d bloggers like this: