Episode Transcript
Venous Insufficiency in POTS with Dr. Alexis Cutchins
[00:00:00] Jill Brook: Hello fellow POTS patients and super people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today I'm honored to speak with Dr. Alexis Cutchins, who if you don't already know her, is a unicorn doctor of POTS, i. e. patients who get to see her are very lucky indeed. Dr. Cutchins is a cardiologist and assistant professor at Emory University School of Medicine in Atlanta, Georgia.
She has so many impressive things on her CV that I could talk about her all day, but her latest impressive feat that caught my eye was writing an absolutely amazing, Marvelous review of POTS. It is so wonderfully thorough and complete and full of leading edge findings and treatment considerations and strategies.
So it's an amazing tool for making sure you aren't missing something that could help. We'll put her paper in the show notes, but it is called Narrative Review of POTS, Associated Conditions and Management Strategies. Her co authors are Rebecca Steinberg and Weston Dickin, and I think this review is something that everyone should read if they care about being thorough in treating POTS.
It is so chock full of wonderful things. So Dr. Cutchins, thank you so much for being on the POTScast.
[00:01:17] Dr. Alexis Cutchins: Thanks for having me. I'm excited to be here.
[00:01:20] Jill Brook: So you have become a favorite person of mine to watch and listen to and learn from in the long COVID and POTS space, because it seems like you scoured the earth for everything relevant and helpful that you could find, going way above and beyond to hunt down every last strategy that you've observed to help and you know your list of potential treatments is the longest and the most thorough that I've seen in a published POTS review and I'm just so excited to talk about that but first can I ask how you decided to dive so deep into the POTS literature and not just live with the prior reviews?
[00:02:01] Dr. Alexis Cutchins: Well, that's a great question. And I think what happened was sort of an evolution over the course of my process of treating patients with POTS for the last 11 years. I would say it wasn't so much of a effort for me with this deep dive, as you say, it was more just the broad nature of what I see in patients who come to see me with POTS.
And... I guess I've developed this sort of broad knowledge because when patients come to see me, I take their symptoms for what they're worth and I listen to what they have to say and most of what I've learned about treatment strategies has honestly come from them. I find that my POTS patients are very educated, very well versed on what works and what doesn't and they know their bodies really, really well.
And when they tell me that they've seen something on the internet, or there was something shared in a Facebook group, or a listserv of some sort, then I look into it, and I respect that option in the management of patients and over time, I've developed a lot of strategies because of that and in writing this review, I think, what was interesting about it was I sort of took all the clinical and anecdotal knowledge that I've gained over the last 11 years and then I set my residence on trying to find data that backed it up, essentially.
And so we tried to do as much as we possibly could to find evidence to back up the strategies that I see work clinically every day. And that's sort of how we developed this.
[00:03:35] Jill Brook: Oh, that's exciting. So you mean you have residents underneath you who know all of this stuff too and are kind of getting trained along the way and helping.
[00:03:43] Dr. Alexis Cutchins: I'm lucky enough to work in an academic institution, so I have other people around me who have shown interest and who want to do the research and look into these things and assist and help me produce publications like this, which I'm very grateful for because I honestly don't have a lot of time to put into research and publishing.
So when I have residents who are interested and eager to help with publications, you know, it's really helpful and they're incredible people and they're open to very many different perspectives. And so yeah, I try to train residents and med students, cardiology fellows and teach them about POTS to my best capabilities with the limited research and data that we have out there.
So, I'm trying, we'll say.
[00:04:32] Jill Brook: Yeah, no, that's exciting because I think many people use the busyness as a reason why they don't have time to get so curious and you figured out a way to make it work. So can you talk about your approach to treating POTS? Because when I read your paper, I think, wow, this is thorough. And I guess I wonder, like, what does that look like when you first meet a new POTS patient?
[00:04:56] Dr. Alexis Cutchins: Yeah. I guess I've developed a lot of strategies over the years, right? When I first see a patient, I do a very complete and thorough history. I really ask a lot of questions about a lot of different organ systems. And sometimes I feel like my patients aren' t even sure why I'm asking the questions I'm asking them, but then when they start answering yes to all my questions, because I'm predicting the symptoms that they have that are very strange and sort of off base, they start to come around to the fact that I have some knowledge about what they might be experiencing.
I also find that my patients sometimes are scared to divulge all of their symptoms because they've been seen by so many doctors in the past and have been discouraged by, you know, saying too much and the trauma that that's caused to them. And so I encourage them to tell me everything. And I think that that's a little bit of a unique approach in this day and age.
I mean, obviously time is a constraint, right? We only have a certain amount of time to see each patient. And so it is hard to do in a short period of time, but I try to gather as much information as I possibly can. Usually that history ends up divulging symptoms of mast cell activation syndrome, signs and symptoms of venous disease, as well as symptoms of POTS, obviously.
Oh, and then of course, hypermobility or underlying mixed connective tissue disease, right? So all of my patients have some aspect of these conditions on some spectrum. And I try not to limit myself to officially diagnosing any of it because it's very hard to pigeonhole.
These specific categories of illness, so I work to sort of look at these patients on a spectrum of mast cell activation syndrome, a spectrum of mixed connective tissue disease, a spectrum of POTS, a spectrum of venous disease. Everyone has like a touch of all of it. And so I gather information with that in mind and then, you know, I speak to my patients about what I'm seeing in their history and in the physical exam that leads me towards believing that they have these underlying conditions.
And then I take the strategies that I've found to be useful and implement them. So I do some laboratory work to look for markers of mast cell activation syndrome to try to document that diagnosis. I do imaging studies to look for venous abnormalities like venous insufficiency and pelvic venous disease, pelvic venous congestion.
And I start with the basics. I tell them to, you know, increase their salt intake and increase their water intake and wear compression. A lot of my patients have never had any formal Instructions about managing their symptoms of POTS. And so that's where I start. And I I usually do empirically start some sort of antihistamine regimen with that, and that's often the first visit.
They go and they get their labs done and their studies done and then they come back and see what my excellent nurse practitioner, who is incredible at what she does, and she sort of takes it from there with implementing medication strategies, et cetera. And then my patients come back and see me and we continue to work through the process. It takes time to begin with with my patients. I see them often on a monthly basis between me and my nurse practitioner to sort of get everyone on board with what we're finding, what we're using to treat, etc. And obviously, as you well know, we try not to implement too many Treatment strategies at once.
It's a very stepwise approach, just in case we find that there's a reaction to a certain medication or we want to know which medications are really working and which ones aren't working, and so it's very stepwise. And then we go through all of the imaging in the labs and we address those as they come in.
[00:08:39] Jill Brook: Wow, that's fantastic. And on this podcast, we've been talking a lot about mast cell activation syndrome and hypermobility syndromes and even myalgic encephalomyelitis. But one thing we have not touched on very much, and I don't hear people talking about very much except in your circle, is the venous disease.
And this really caught my attention because I was diagnosed with venous disease before my POTS, before my MCAS, before my other things. But even yet to this day, other than hearing people like you talk about it, no one has ever connected it with the rest of my issues. And yet you have some very practical strategies that have helped me enormously.
And so I feel like everybody needs to hear what you have to say about venous disease. Do you mind just starting by talking about what that even is and then how it ties into POTS potentially?
[00:09:35] Dr. Alexis Cutchins: Sure. So I started looking for venous disease in my patients years and years and years ago. I was looking for lower extremity venous insufficiency and what prompted me to look for, it was actually a patient, as it always is, who I had been following for some time. She clearly had mast cell activation syndrome, but I didn't know what that was at the time.
She only ate four foods. She told me that every single medication she's ever been on has caused major psychiatric side effects, and she didn't want to take any medications so I worked with her, and we came up with a regimen of fluids and sodium and compression that really worked for her, but she found that She really couldn't do anything without her compression socks.
She was very much reliant on the compression. And one point she came into my office and she said, you know, it's not working anymore. I'm doing everything the same and now I can't stay upright long enough to do my job, which was door to door sales. And so I said, okay, well, let's look at your legs.
Let's see what's going on with your veins. And she had significant lower extremity venous insufficiency. And that's when the valves in the veins don't work properly. And so When your body is trying to get blood flow back to the heart, the way that that works is that your calf muscles and the muscles in your legs push blood up into the veins and then there's a period where there's venous stasis and and the valve keeps the blood from flowing back into your foot and so each you Pumping motion that your legs perform causes blood to flow up back to your heart, but if you don't have competent valves in the veins, then that blood flow just keeps on pushing backwards, and so you get this pooling in your legs, which I think many POTS patients are aware of.
So we looked for venous insufficiency and she had it. And after months of trying to get the ablation procedure approved and get a vascular surgeon on board, it was pretty exhausting. And to get her on board she had bilateral low extremity venous ablations of her greater saphenous veins. And that's a pretty non invasive, simple procedure that basically sclerosis down the greater saphenous vein.
And then I didn't hear from her for months and I called her and she said, Oh, I just didn't come in to follow up because my POTS is gone. I'm cured, sort of. And this was a dramatic response. Not all of my patients have had this response. Totally anecdotal, but I do believe that we allowed for the veins that were working properly in her legs to compensate for the defect that had been occurring and so we removed the vein that wasn't working and we allowed the working veins to do their job and she was able to get blood flow back up to her heart.
And so given that success, I started looking for venous insufficiency in all my patients, because, you know, I felt like it was good to know if they had it, and if there was an option for treatment down the road, or if this was something that we could approach if their treatment strategies weren't working for them and that's what I did.
And so I started sending a lot of my patients to the vascular surgeons for this procedure. Some of them would get approved for it, some of them wouldn't. Some of them the vascular surgeons would say, no, I don't think we should do it. You don't have enough symptoms in your legs. And so it's been hard because we don't have a randomized controlled trial saying that if we do this procedure on your legs, your POTS will improve.
But anecdotally, the ones that have had it done find improvement. I've been trying to, you know, work on getting some of this information out to the public, but it's anecdotal, there's no research that has officially been done that says that this is a treatment for POTS, but I see it in my clinic.
I treat it when I think it's appropriate and it seems to help patients. Then some of these patients didn't get better. And so I started looking into why that would be. And you know Dr. Smith and his findings with pelvic venous disease. And I think he has a lot of good points about it.
And sort of between him and Dr. Rowe, Peter Rowe, In conversations with them, I started looking into pelvic venous disease as a possible etiology for why my patients with lower extremity venous disease that was fixed didn't get better symptomatically. And it turns out that The congestion in the pelvis is a large component of what makes the valves fail to begin with in the legs.
And when you have compression of the iliac vein, for instance, or May Therner syndrome, you get high blood pressures in the veins of the legs because of that and that causes the valves in the veins to stop working properly. So, it made a lot of sense to me that fixing that iliac vein compression would help with blood flow return to the heart again.
So I started looking for that in my patients and have found it very prevalent in the population of patients that I see in my clinic. So I started evaluating patients for pelvic venous disease as well. And this is new to me I've only been doing that for less than a year. But... I have hundreds of patients that I've seen that I have diagnosed with this and, you know, a handful of them who we've actually gone ahead and treated because they're so disabled from their POTS and other associated illnesses and there's a spectrum of outcomes in that realm too.
All anecdotal. Of course, this is not something that I'm trying to promote as a cure for POTS in any way, but anecdotally, some people do really well with this, and some people have not found that it's improved their quality of life much, and there's a lot to learn about it. And there's a lot of research that needs to be done in this realm to figure out who would be the best candidate, and whose veins we should fix, and which veins we shouldn't fix, and it's certainly an interest of mine and I'm fascinated by it, but we're really in the early stages here.
[00:15:22] Jill Brook: right, right. And for our listeners, we did have a conversation with Dr. Stephen Smith about the pelvic congestion piece, if they want to find that and listen to it. And I would just throw in my own, it's just an NF1, but my venous insufficiency, I was told by the vein doctor that they couldn't fix, or they wouldn't want to fix my veins because my deep veins are actually worse and they said that if we took out the ones we normally take out, you'd only be left with something that is even doing a worse job of returning blood up to the top.
And so that's why I was so grateful for some of the strategies that you have mentioned about helping venous insufficiency when some of that other stuff either hasn't happened yet or isn't an option. And I would even say that venous insufficiency I think is my last major problem because I feel like I have conquered the POTS largely and conquered the mast cell activation syndrome largely and even the autoimmunity. But oh man do my legs hurt all the time. And you happened to have not just like One but several things that helped me and you probably don't remember, so I'll tell you what they are.
One was a supplement called diosmin. One was elevating my legs for an hour before bedtime because I was one of those people, and maybe you can talk about this, who would get up Every hour to go to the bathroom overnight. And it was kind of like the least of my problems, but it sure is nice now to only maybe go a couple times.
And then the really huge one is leg pumps. Oh my goodness. If you maybe can talk About those and anything else you want to talk about in the world of things people can do for either the venous insufficiency or pelvic congestion. If they're trying to just kind of make it through until they see a doctor about whether something bigger, more permanent can be done.
[00:17:10] Dr. Alexis Cutchins: Sure. I will say that I agree with your vascular surgeon because that deep venous reflux is a sign of compressive syndromes in the pelvis, and so that's what's causing the venous insufficiency to occur, but if you eliminate those veins that aren't working properly in your legs, then you still have that high blood pressure in the venous system in your legs. And so the veins that are going to grow and compensate for the ones that you take out are just going to develop insufficiency as well. So it's going to be a loop that you're not going to get over with repetitive ablation procedures. It'll be there until you fix the pelvic venous disease, which is probably what's underlying. Yeah I've been looking hard for strategies for these patients that don't involve procedures, right?
I also look hard for procedures, to be honest, because so many of my patients don't tolerate medications or other strategies, right? So I think that it's a double edged sword. Many patients would do better with just getting a procedure and fixing an underlying problem, so that they don't have to be on medications and, you know, all these other things.
But some patients are concerned about fixing another a stent in your body, which is not insignificant, and want to try to manage these things medically, which I think is also very valuable. To your point about the strategies that have helped you, the diosmin was a supplement that I found. Actually, it was suggested to me by another interventional radiology attending who I've been trying to incorporate in my referral practice for these patients.
He learned about it at a interventional radiology conference that was looking at pelvic venous disease and the 2 supplements That that were suggested to him were horse chestnut extract and diosmin. I looked up both of those, you know, for literature and the diosmin actually has some valid literature that shows use in the setting of venous insufficiency.
There was 1 publication that demonstrated that it helped decrease calf circumference. There was another study that was interesting that, that showed that giving patients prior to bypass surgery, diosmin for a week, helped the veins that they're harvesting and using for the bypass surgery, you know function better. These are very small small small studies but It it lent me to believe that maybe this would be helpful for my patients So I started recommending it and I will say I don't have a robust response in my clinic. There are a handful of patients who have found it very useful. Others not so much and I wonder if So, if they're just very sick patients, I mean, they have so many things going on to begin with that they can't really even tell if it's helping or not at that point because it may not be a dramatic improvement.
Also, you know, in just discussing this supplement with others it seems like maybe I need to be using it in higher doses or in conjunction with other medications or supplements that help heal the endothelium of the vasculature. So it's a black box to me, but I'm glad it's helped you Of course.
And I think it's certainly not gonna hurt to try for people if they want to work on their venous disease, you know, from a supplement standpoint. The nocturia or the frequent urination at night, it fascinates me actually. And before I even started suggesting elevating your legs at night before bed to my patients, I was suggesting this to my patients with heart failure who have intrinsically, a lot of swelling in their lower extremities, and they also get up all night to urinate, and it's a major, major complaint. My patients will tell me, I don't go to the bathroom all day, and then I go to bed, and I'm peeing all night, and the reason that happens is because you're pooling fluid in your legs all day.
So there needs to be blood volume to your kidneys in order for your kidneys to make urine and fill your bladder and if the positional nature of your day is with you sitting or standing then you're going to have pooling of blood in your legs. And if you lift your legs and elevate them that blood can finally move back into your vascular system and create, you know, more flow to the kidneys and more urine and Full bladder.
And so what I find is that if you can raise your legs for an hour or so before you go to bed Then you urinate more before you go to bed and there's less of this Gravitational force of pulling more fluid out from your lower extremities. So you don't pee as much overnight. It's not a hundred percent.
You know, you still probably have fluid there that's it's just reallocating itself into the right place, but it certainly improves. And then the pneumatic compression is something that I only recently started recommending to my patients because I had two patients that have POTS. They are runners.
I have a lot of patients with POTS were athletes, right? I think that's not uncommon. And they both had COVID and then they both developed long COVID and they were very frustrated because they couldn't run the way they used to be able to run. And they on their own thought that they should use these pneumatic compression boots, which are often used for athletes during recovery from exercise to help them get back to exercise the next day.
And they're boots that sort of squeeze or inflate with air. They start in the toes and they sequentially inflate all the way up to the thigh and there's basically, in my opinion, and I don't know if this is true or not, they're squeezing fluid out of the tissues and back into the intravascular space, which I think is a problem for my POTS patients, because of the underlying mixed connective tissue disease. They sort of have more extravasation of fluid from the vessels into the tissues.
So by pushing it back in or trying to squeeze it out, sort of maybe the fluid is entering the vascular system better that way, Versus just elevating the legs where you're not really getting that fluid out of the tissues. Similarly to wearing compression socks all day. I mean, you want to do that to keep that fluid from going into the tissues to begin with, right?
There's two ways to prevent this. So the pneumatic compression sort of sequentially pulls fluid back in. And I think if you do that at the end of the day before bedtime as well, you'll find that you urinate afterwards. There's more urine and you're not peeing as much overnight also. With these two patients, the athletes, they started doing this nightly, and they started running more.
They could run faster, my college age student athlete said for the first time since he had COVID, he was back to his high school 5k running speeds, which was a 15 minute 5k, which is pretty good. So, He found that just using these nightly really helped him get back into the exercise levels that he wanted to be at.
And theoretically, or just, you know, intellectually, it makes a lot of sense to me that this would work. And so I've, I've been recommending it. I've found patients find it very helpful and useful, actually. They can be very tight. You have to sort of tailor the way you put them on and the level of compression for each person.
You don't want it to hurt. You don't want to cut circulation off to the lower extremities, so you need to find that right balance, which I'm sure you've realized and then if it does hurt, or if it does make you feel bad, or if you, you know, had one patient tell me that she started having horrible sort of mast cell flares using the compression, I think probably because the fluid that had been pooling was inflammatory in some way.
And coming back into her bloodstream. So I told her to stop using them until we got everything else under better control. So, you know, there's risks with everything. I I'm not saying this is going to cure everyone's POTS, but I do think that in the right setting, it can be very helpful. It's just sort of one more tool.
[00:24:59] Jill Brook: Right. And I find it just feels good. It feels like a massage. So I like that too.
[00:25:03] Dr. Alexis Cutchins: Yeah, that's what my patients say also. These used to be super expensive. You know, only gyms would have them or university athletic centers. But now you can get one off of Amazon for $120 and I felt like that was worth it. With the amount of money we spend on supplements and medications and doctor's visits and everything, if you can afford to spend 120 on something that you can use every single day that makes you feel better in the moment, but also helps you feel better long term, I think that it's a valuable investment.
[00:25:34] Jill Brook: Yeah, absolutely. And I just love how you have found so many things like this that maybe don't help everybody, but they're kind of low risk and may help. And I'm wondering if you have any more in that category of things that are not just sort of like The normal, same old stuff. And I have a couple examples of things that I don't think get talked about enough. One is oral contraceptives. One is a gluten free diet, but I would love to hear kind of what you think is a little bit novel among other people who are kind of following the same old normal POTS stuff.
[00:26:09] Dr. Alexis Cutchins: Yeah, so the oral contraception I think is, it's one of the first things actually I address when I see patients with POTS. It is touched on in the paper that I wrote although there's zero data, like we looked for it and we couldn't find it, and so it's a study that needs to be done, which I think would be fascinating, and I have friends in the GYN world who are just as eager to publish this sort of stuff.
I do find that eliminating a period is one of the best things you can do for a patient with POTS. Patients with POTS have flares of symptoms right before their period and during their period. It's, I think, mediated by a surge in estrogen, that's what's happening right before your period. And the estrogen can also trigger mast cells and cause mast cell flares.
But you also get vasodilation during that period of time. And so you're pooling more, you're retaining more fluid. Everyone knows what symptoms of PMS are, right? But I think that they are... Accelerated in patients with mixed connective tissue disease and mast cell activation syndrome. And so it just contributes more and more to your POTS symptoms.
So I might be the only cardiologist in the country who prescribes birth control pills to my patients. I only prescribe progesterone only, very low risk pills, I don't use estrogen based birth control ever, and I usually obviously have GYN backup and support with these prescriptions and encourage my patients to see their OBGYNs, this is not something I do regularly, but in times where patients say that they just can't get into their GYN, it's not a possibility and they, Have horrible menstrual periods and horrible POTS symptoms.
I will on occasion prescribe a progesterone only pill. I do find that the estrogen based pills in some people will work, but we have to be careful adding estrogen into this mix because it can be a procoagulant. It can have a side effect of migraine or stroke like symptoms or even, you know, blood clot, TBT, PE, that kind of thing.
And so so I'm very cautious with estrogen and I don't like using it in patients with POTS. But I do like eliminating periods. I think it's very helpful. On that note, the other thing that helps is bleeding less, right? If you're anemic and you have low iron stores, your body is going to compensate by giving you a higher heart rate.
And when you have a higher heart rate, that just intrinsically is not going to help your POTS symptoms. And so, I look for anemia in my patients, obviously. I look for iron deficiency. I treat iron deficiency. When it's severe, I'll even send patients for IV iron, which is controversial because some patients will have reactions to the IV iron the mast cell flares, and so it's not something to be taken lightly. But I have had patients with dramatic symptom improvement from iron supplementation and so I try to limit periods because I don't want people bleeding as much because it's just not helping their volume status and their intravascular volume.
So that's another thing that I do that maybe not as many people are looking at you know, otherwise I do sort of target mast cells pretty aggressively, and I try to treat that, which I know you are aware of, and your listeners are aware of but I use treatments in that fashion. I do ask patients to restrict diet. Especially gluten free diet, you know there's data out there that shows that a gluten free diet can decrease POTS symptoms by about 30%, and I've seen that in my practice, I think it's real.
One thing I tell my patients, and I don't know if this is... If this is right or not, so I tell patients to do a gluten free diet, but then, you know, I talked to them about reintroducing gluten after they've seen improvements and what I asked them to do is reintroduce only organic wheat products or products that were developed in other countries like pasta from Italy, because the wheat in our country is harvested with pesticides, and those pesticides aren't washed off from the wheat. You're just ingesting the pesticides that we use to grow wheat in our country. And so I think that those pesticides are inflammatory and I think they're causing disruption of POTS symptoms, of mast cell symptoms, I think that people don't tolerate them.
And when I say that to patients, it's not uncommon for me to have a patient respond with, Oh, is that why when I did my study abroad in Australia, I didn't have as many GI symptoms? And I say, I don't know if it's right, but maybe, you know,
[00:30:45] Jill Brook: hear that all the time. Mm
[00:30:47] Dr. Alexis Cutchins: Wheat as you are here, so their wheat doesn't have Roundup on it, and the wheat here does.
It's anecdotal. Everything I do is anecdotal, right? But I've seen enough patients and heard the same story enough times that it makes a lot of sense to me. I think if you ask a gastroenterologist, they would think that I have no basis for what I'm saying and maybe I don't, I don't know, but I do see people who go back on organic wheat only and they feel okay.
Whereas when they were eating just general wheat products before they started seeing me, they felt worse. And so who knows? It could be placebo. It could be other confounding factors, other treatment strategies I've given them, but it is something that I mentioned to my patients because it's something that's low risk.
It's easy to do. We have plenty of organic wheat products now. Trader Joe's is a great resource. It's cheap and mostly, you know, 100 percent organic stuff in there. And so you can really find replacements for normal wheat products now, anywhere. And I think it's a low risk, sort of potentially high yield option.
[00:31:53] Jill Brook: Yeah. Yeah. And so practical and so positive. And I hear that all the time as well. So I would add that. Is there any particular area of either POTS or long COVID research that you are following closely that you think is especially interesting or promising, anything you're watching for?
[00:32:13] Dr. Alexis Cutchins: Yeah. In the long COVID realm, I do think the micro clotting research is. It's very promising, and I think it's very real. I do think there is a component of clotting that occurs in our patients. My patients often have a high D dimer, which is a molecule in the blood that is a byproduct of clot breakdown and we use that marker to sort of risk stratify patients for clot. So if you go into the ER and someone thinks you might have a blood clot in your lung, we check a D dimer. And if the D dimer is normal, the chances of you having a blood clot in your lung are exceedingly low, to the point where you probably don't need to do a scan or an ultrasound or anything.
But if that D dimer is elevated, then we immediately look for that blood clot because it's a concern. So many of my patients with POTS have been to the ER and they get a d dimer and it's positive. And then they go and get their CT scan to look for a blood clot in the lung.
It's normal. And they get discharged from the ER. And I think those patients have probably mild clotting going on. There's some underlying micro clotting phenomenon, and this is what they're finding in the long COVID population, and it's unclear what's causing those clots in the long COVID patients.
Is it the spike protein? Is it endothelial dysfunction? Is it a combination of many different things? Probably. But they're there. And when you look under a fluorescent microscope. And so I feel like there might be a relationship between venous stasis and this micro clotting phenomenon personally, because I have an interest in venous disease, obviously, but These patients are constantly breaking down clots.
That's the the D dimer elevation. And so if they're just really really teeny tiny clots, they still have to be broken down and then you get this elevation in that marker. So in my personal anecdotal experience, I think that this micro clotting phenomenon is real, but also the the research and the literature is sort of demonstrating that this could be one of the factors contributing to long COVID symptoms.
I think that there's a lot going on now in terms of looking into autoimmune disease And inflammatory markers in patients with POTS. I think that that's very real. I think that there is a huge autoimmune component to POTS in general. There are many manifestations like small fiber neuropathy and, you know, people with Sjogren's syndrome and even lupus or rheumatoid arthritis, they have autonomic dysfunction and they have Symptoms of POTS.
And so, and treating those underlying illnesses helps them feel better. So, I think all of these things are sort of overlapping conditions. And if you can target one or two of them, you then you have More symptomatic improvement. So I think that anything that's going on in terms of research in the autoimmune realm is very valuable.
Anything in the clotting realm, I think is very valuable. And then, I personally feel like this venous disease picture is going to unfold a lot of associations between venous disease and POTS as well, as we look into the research and try to do some studies here.
[00:35:22] Jill Brook: That's great. Is there anything that your complex patients can do to make it easier for you to help them?
[00:35:31] Dr. Alexis Cutchins: Yeah when I see patients, oftentimes they've seen many doctors before me, which I think is not uncommon. They've been discouraged. They have been dismissed. They have been told it's all anxiety. Or in their head, they just need to relax. Here's a SSRI and you'll feel better. Although I will say I use SRIs in the treatment of POTS often because it helps with venous return.
There's data that supports SSRI use in POTS, not for anxiety and depression, but for POTS. But anyway... patients come to me and they feel like it's just one more visit, right? And, and then I, I sort of tell them my thoughts about their underlying illnesses and what could be contributing to their POTS.
And I think it's the first time that they've heard that there's a possibility that there is actually something wrong and that we might have the ability to fix it and we start doing tests and they come back abnormal for the first time in their lives. Because everyone with POTS has had many, many tests that come back normal. And then what happens is we get a lot of messages through our MyChart and MyChart is a wonderful thing for people who have doctors or doctors who use Epic, you know, it's very helpful, but also The utility has become so useful that patients sort of start running off question after question after question like text message style to our staff.
And I can understand why they get excited, you know, about what I say to them and they go and look on the internet and read stuff. And then they have more information for me or they have more questions and it gets a little overwhelming to our system. So, we try to encourage patients to hold on to those questions and write them all down and use them when they see my nurse practitioner and follow up in just four weeks or when a result comes back and it's abnormal, you know, I try, to encourage people to understand that that result has been abnormal, it's just that no one has looked for it before, and so it's not an emergency, and it's not something that needs to be addressed right away, but it can also be addressed at that four week follow up. And so I think it's useful for patients to understand that once we do start finding things that, you know, may potentially be treated, they're not emergencies, they're just valuable pieces of information that we have to further our care. And so, I see so many POTS patients that it can get overwhelming at times for my staff, obviously.
So we try to sort of keep the expectation in place that there's just time for communication in the office when we can see them. And, of course, you're welcome to message us, but, you know, to limit it to things that we can address quickly over my chart, right. I would say that's probably one of the biggest thing I could ask for patients with POTS to do for me, in my practice of taking care of them.
[00:38:20] Jill Brook: Absolutely. Yeah. It sounds like basically to just work within your system that you're set up for. Yeah, but I can see how people are so enthusiastic to suddenly gain access to these answers and to all of your brain power. You are amazing and I want to be mindful of your time. I'm just so grateful for everything you do with your patients and your research and your students.
And is there anything else that we should say on this subject today?
[00:38:50] Dr. Alexis Cutchins: I don't think so. I think we covered a lot. The only thing I'll say again is, you know, what I do is Based on my personal experience with patients with POTS and not based on any kind of fact, unfortunately. And the research still needs to be done and we still need to look into, you know, the long term effects of what, what different medications and procedures can do to patients.
And we got to be very mindful that, this is not data driven. This is not Research based, you know, and so just for everyone to sort of understand that what I'm talking about today on this podcast is my personal experience with patients with POTS and not anything that's been founded necessarily in, in randomized controlled trials.
[00:39:36] Jill Brook: Yeah, and we're so grateful that you're willing to put it all out there so that people can try it and benefit and not wait the next, I can't imagine how long it's going to take to have those randomized control trials. It's going to be probably the rest of my lifetime. So huge gratitude for you. Thank you so much for all of this work. What a pleasure talking to you. And everybody will put that article that Dr. Cutchins wrote into the show notes so that you can go check it out. Okay, listeners, that's
all for today, but we'll be back again next week. In the meantime, thank you for listening. Remember you're not alone and please join us again soon.
