Pros and cons of going through full autonomic testing?

[dizzytizzy]

Hi everyone,

I've posted my hx on here once before, but essentially I'm a 36 y/o female with previous diagnoses of Fibromyalgia and Hashimoto's. In January of this year, I began having early morning tachycardia upon waking (usually between 4-6am) that would go to roughly 150-160 bpm. After several scary ER visits, all they found was sinus tachycardia and blamed anxiety. Finally saw a local EP and he said it was autonomic dysfunction, specifically he said blood pressure dysregulation. He has me on increased fluids/salt and midodrine. 

My symptoms have progressed to tremors, weakness, dizziness, lightheadedness, etc during the daytime hours.  The nighttime episodes have mostly stopped.  If they do occur, I can stop them with a vagal maneuver. He now wants to increase the midodrine and add compression stockings - to which I'm not necessarily opposed. However, he also wants to add florinef, which I know can be really hit or miss with patients and seems like a much stronger med that I'm really not sure I want to take. Before we keep adding meds though, it seems prudent to do the full range of autonomic testing. I have an appt with him next week and intend to ask about this, but wanted to hear from you guys. I have done a Zio patch, echo, and lots of blood tests prior to this - electrolytes, thyroid, CBC, etc but nothing really specialized. 

Isn't it beneficial to complete the testing so we know exactly what we're dealing with? So far, he's basing this off of an in-office 2-minute poor man TTT and reports of my vitals/symptoms that I send to him. I did do a 30-day heart monitor which I'll learn the full results of next week. I also want to dig to find the cause of this as well (i.e. possible underlying disease process) and not just treat the symptoms. Sarcoidosis has been on the radar of my rheumy in the past and believe that's worth checking out too as dysautonomia can be secondary to that. 

TL;DR: Is undergoing the full range of autonomic testing important? Or can you be properly diagnosed and treated without it? Can you determine the underlying cause of your ANS dysfunction without it as well?

[Guest KiminOrlando]

I just went through some testing to rule out sarcoidosis and neurosarcoidosis. To be honest, at this point ANS testing for me did 2 things: 1) documented my limitations for disability and 2) validated and documented what symptoms needed to be treated. Once they knew I had dysautonomia the configuration of symptoms seem to be unique to the patient. It hasn't lended itself to a concrete diagnosis. I guess the questions are:

 What are you hoping to gain from the testing?

Does your insurance require it for treatment?

How much does it cost you?

Is your doctor willing to treat your symptoms without 'proof' they exist?

I would like to tell you that with ANS testing and 3 doctor's appointments you will have your answers, but it hasn't been that way for me. I have been dealing with this for 35 years. My symptoms continue to evolve as does my diagnosis. Right now I also have RA and tested positive for lupus. There is an autoimmune component to some dysautonomia that I don't think they have quite figured out yet. I started out with Mixed Connective Tissue Disease and Undifferentiated Connective Tissue Disease as a diagnosis. 

I'm sorry I wasn't able to give you a better answer.  Hope you get it figured out.

Kim

[yogini]

By "full range of tests", which tests do you mean?  It isn't a bad idea to get at least a formal tilt table test.  There are heart tests like ECG and EKG, stress test. Then there are fancy dysautonomia tests like a sweat test, catecholamines, etc.   Once you start florinef it is hard to go off it, so to the extent florinef impacts the results, it would make sense to  get the tests you need before then to see your baseline.

It is possible to diagnose dysautonomia from just a poor man's tilt.   Not everyone has access to a doctor knowledgeable about POTS or facilities which have the the sweat test, catecholamines, etc.  I don't know the numbers but I'd guess most people don't have all of these tests. And  most people - whether or not they have the fancy testing - still have to do a lot of trial and error to find the right treatment.  It sounds like you are already on the right track with the treatment and that is the most important part.

The good thing with midodrine is that you can increase your dose and if that it too much it leaves your system quickly and you can go back down to a lower dose.  Sometimes people combine midodrine and florinef but, since they both increase BP,  usually you pick one or the other and just increase your dose.  

 

[Pistol]

I had autonomic testing done in a very experienced autonomic research center and it was negative. I went to a second very renowned autonomic specialist who did catecholamines and diagnosed ( and treated me for ) hyperadrenergic POTS. I had 2 tilt tests by 2 different major hospitals in my state and each one showed something different. There is no golden standard with dysautonomia, no test that is the same for everyone. That is exactly why so many docs do not touch ( or even recognize ) dysautonomia. And it is the reason it is still the invisisble illness ( in my case even a major research center was able to detect it ). 

[dizzytizzy]

6 hours ago, KiminOrlando said:

I just went through some testing to rule out sarcoidosis and neurosarcoidosis.

What was the testing you did for that, Kim? I've had a positive skin biopsy that showed "non-necrotizing granuloma" but the pathologist wouldn't go so far as to actually rule in sarc, but did say it couldn't be ruled out.  Others have told me I should have a PET scan to look for sarc in other areas of my body. I've had elevated vitamin D 1, 25 several times now too, which sometimes accompanies a sarc dx. Chest xray and ACE have been normal, so local rheumy was taking a wait and see approach. I thought the biopsy would be enough. 

6 hours ago, KiminOrlando said:

I guess the questions are:

 What are you hoping to gain from the testing?

Mainly that we are actually dealing with an autonomic issue and we could quantify the type of OI it is - POTS, hyper-POTS, neurocardiogenic, etc. - in order to better guide treatment. 

6 hours ago, KiminOrlando said:

Does your insurance require it for treatment?

So far, they haven't required any specific testing. They've been covering my meds, visits, etc. 

6 hours ago, KiminOrlando said:

How much does it cost you?

Because all of this hit the fan in January, we've actually already reached out maximum out of pocket expenses for the year, so we would be zero OOP so long as we stay in network. I've been sick since 2003 (on and off with weird symptoms like most of us) and I see this as a chance to dig deep and maybe find out what's truly going on. 

6 hours ago, KiminOrlando said:

Is your doctor willing to treat your symptoms without 'proof' they exist?

So far, he has. I've only actually seen him once in office. Most of these med changes have been done via phone/email based on my orthostatics I send him and my symptoms. I'll know more when I talk to him next week, but so far he hasn't suggested TTT or anything like that and seems fine to treat without concrete "proof."

[dizzytizzy]

5 hours ago, yogini said:

By "full range of tests", which tests do you mean?

I was thinking TTT, QSART, blood volume, lying/standing norepinephrine - pretty much the full gamet of tests that places like Cleveland Clinic and Vanderbilt seem to run at their auto clinics. At the very least, a formal TTT would ease my mind a bit since we haven't done any testing with continuous monitoring of BP/HR. 

5 hours ago, yogini said:

There are heart tests like ECG and EKG, stress test.

I've had several EKGs and a 10 and 30 day heart monitor. Looking forward to hearing from him about the 30 day monitor results at my appt. 

5 hours ago, yogini said:

Once you start florinef it is hard to go off it, so to the extent florinef impacts the results, it would make sense to  get the tests you need before then to see your baseline.

Yeah, florinef just scares me. My sister has ulcerative colitis and has been on and off steroids for 20 years now and I've seen the toll it's taken on her body. I worry that the side effects will outweigh the benefits. And I do agree - it we're going to do more testing, do it before I trial something like florinef. 

5 hours ago, yogini said:

The good thing with midodrine is that you can increase your dose and if that it too much it leaves your system quickly and you can go back down to a lower dose. Sometimes people combine midodrine and florinef but, since they both increase BP,  usually you pick one or the other and just increase your dose.

I increased the dose of midodrine today. Not as much as the EP wanted as I tend to be sensitive to meds and want to go up slowly. It did cause some chest heaviness/pain, which is new for me. Willing to give it a few days at least to see if those symptoms subside. Didn't notice an increase in BP today, but we'll see. 

5 hours ago, yogini said:

 

 

[dizzytizzy]

2 hours ago, Pistol said:

I had autonomic testing done in a very experienced autonomic research center and it was negative. I went to a second very renowned autonomic specialist who did catecholamines and diagnosed ( and treated me for ) hyperadrenergic POTS. I had 2 tilt tests by 2 different major hospitals in my state and each one showed something different. There is no golden standard with dysautonomia, no test that is the same for everyone. That is exactly why so many docs do not touch ( or even recognize ) dysautonomia. And it is the reason it is still the invisisble illness ( in my case even a major research center was able to detect it ). 

Thanks for sharing your background, Pistol. That's crazy about your testing results! And like you said, I suppose what makes this disease so difficult to live with, diagnose, treat. We all present so differently. I'm not necessarily a black and white thinker, but I'd like some reassurance that we're on the right track and not missing something. It's been a very scary ride so far as you all are well aware yourselves. 

Are your symptoms under control? What treatment did you follow?

I have so many odd symptoms that have racked up over the years that I was hopeful maybe it would all come together into one diagnosis now. I do worry about not being sufficiently treated for some underlying issue and then being up a creek when someone figures it out years later and it's been left to fester. When I first got sick in 2003 and landed with an eventual dx of fibromyalgia around 2006, I actually think it was my Hashi's starting up at that time. I didn't get a Hashi's dx until 2014 when my new PCP ran the full thyroid panel. Up until then, only TSH has been done and I didn't know better to push for the others. 

I was worried about catecholamines just because I was so jittery and the tachy episodes came on so suddenly, so EP did a 24 hour unine metanephrines test which was normal. Like I mentioned up thread, I've only seen him once in office so far and he believed the nighttime tachy (which was the only symptom at the time) was due to something like supraventricular tachycardia, excess adrenaline, or my body's reaction to normal amounts of adrenaline. He also mentioned the BP dysregulation at that time. 

I've only seen the brief narrative for the 30 day heart monitor which said no cardiac arrhythmias, but mentioned sinus tachycardia. I'm curious to see his interpretation of it. His nurse called me yesterday though and said that everything still points to dysautonomia as I've obviously been worried about some undiagnosed heart condition since all this started with the rapid heart rate. 

Sigh, it's all so convoluted and messy. I have a six year old daughter and this has really brought mortality concerns to the forefront.

[dizzytizzy]

UPDATE: Had follow-up with EP today. He's not concerned by anything on the 30-day heart monitor. He still feels we are dealing with autonomic issues. He believes that, functionally, my body's ANS system is intact, but I have an abnormal response to changes in position - so an abnormal response to a normal occurrence. His goal is to get me off all medications and is only using meds to help tide me over until we can get back to "normal." He wants me to focus on exercise on the recumbent bike as well as fluids/salt/compression and he thinks that gradually my system will straighten back out. 

He did say that I will likely forever be susceptible to "breakthroughs" even once we get back to an even keel, where being in the sun for prolonged periods, coming down with the flu/illness, going on a long car trip, etc will likely cause things to flare back up from time to time. 

I pressed him on the need/benefit of doing more elaborate testing - formal TTT, blood volume, QSART, etc. He referenced research by Dr. Grubb that indicated knowing what "type" of autonomic dysfunction wasn't necessarily beneficial as there isn't a set/approved treatment protocol for each type. It frequently comes down to trial and error to figure out what works best for each individual. So @Pistol and @yogini nailed that on the head! He said if I had escalating issues despite treatments, he would send me to Cleveland for a workup by Dr. Jaeger to ensure there wasn't something else going on. 

I do think I'm still going to pursue the full workup for sarcoidosis, but will let things lie for now with the dysautonomia. Told EP I was very hesitant to add in florinef right now and he was totally fine with that. He said it was a tool in our arsenal if we needed it. He also said I can adjust my midodrine up and down as needed based on how I'm feeling each day and/or what activities I may be doing (i.e. outside in the heat, running errands vs lounging at home). 

So all in all, I think it was a good appointment and I feel somewhat relieved!

[Weyland]

It wouldn't hurt to get checked out by a neurologist that is a specialist with dysautonomia and get the autonomic testing done.  It's more information for you to use to help get yourself feeling better.  

[bunny]

I like the response Kim gave and have a similar viewpoint.   What, if anything, will be gained by the test results that you don't already know?  What are the risks and costs?  What do the test results actually mean in regards to your daily life and daily health? Even if the tests were absolutely, positively 100% accurate, the true mechanism of dysautonomia is still not understood.  Current treatments reflect this uncertainty and variability.   When you go to the Dr for a sinus infection, they're not culturing it and finding the genus/family/species of the bacterium in question. They just write a script for antibiotics and call it a day. 

In my case, we already had a good hint of what we were dealing with from vital signs alone.  A tilt test and a few cardiac tests to confirm and that was it.  We could have done more testing, but we had enough information to act on and went with it.  

[dizzytizzy]

@bunny: Those are all good points. I think it's just the worry that some of the symptoms can be so vague and the worry that something else may be going on that is actually treatable. It's a tough diagnosis to just take at face value, I suppose. 

[Potsie1990]

On 5/5/2018 at 5:26 PM, dizzytizzy said:

What was the testing you did for that, Kim? I've had a positive skin biopsy that showed "non-necrotizing granuloma" but the pathologist wouldn't go so far as to actually rule in sarc, but did say it couldn't be ruled out.  Others have told me I should have a PET scan to look for sarc in other areas of my body. I've had elevated vitamin D 1, 25 several times now too, which sometimes accompanies a sarc dx. Chest xray and ACE have been normal, so local rheumy was taking a wait and see approach. I thought the biopsy would be enough. 

Mainly that we are actually dealing with an autonomic issue and we could quantify the type of OI it is - POTS, hyper-POTS, neurocardiogenic, etc. - in order to better guide treatment. 

So far, they haven't required any specific testing. They've been covering my meds, visits, etc. 

Because all of this hit the fan in January, we've actually already reached out maximum out of pocket expenses for the year, so we would be zero OOP so long as we stay in network. I've been sick since 2003 (on and off with weird symptoms like most of us) and I see this as a chance to dig deep and maybe find out what's truly going on. 

So far, he has. I've only actually seen him once in office. Most of these med changes have been done via phone/email based on my orthostatics I send him and my symptoms. I'll know more when I talk to him next week, but so far he hasn't suggested TTT or anything like that and seems fine to treat without concrete "proof."

Holy moly! we are in the same boat, like almost to the T! I feel like we could be the same person by your response. I’m doing everything you’re doing now. Let me know if you find out anything. I just met with the immunologist today about MCAS and he said that the people who have it go into anaphylactic shock which didn’t sound like my allergic complaints. Have you been tested for EDS?