When POTS Isn't the Whole Story: What Doctors Often Miss | Office Hours

[00:58] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes dedicated to helping you navigate joint hypermobility and live your best life. Today's episode was inspired by both a question from a listener and also by one of my fitness instructors who has POTS. I was sitting talking to her one night and she was telling me about her symptoms, and I was like, huh, it sounds like maybe POTS isn't the whole story. So I'm really excited to have this episode today where we're going to talk about POTS imitators and some other things that people might want to consider if they have POTS and some other contributing factors that might be involved. I'm also really excited to be joined today by one of the producers from Human Content, Aron, who is even wearing his VIP Bendy Bodies merch.

[01:51] Aron: There we go. Reppin' Dr. Bluestein. I never take it off.

[01:56] Dr. Linda Bluestein: You never take it off. I love it.

[02:00] Aron: What's up? How's it going? Thanks for having me accompany you today.

[02:05] Dr. Linda Bluestein: Yeah, I'm super excited. This is going to be fun. I want everyone to stick around until the very end so they don't miss any of our special hypermobility hacks. And as always, this information is for educational purposes only and is not a substitute for personalized medical advice. Here we go.
[02:22] Okay, we're back. And today we are going to be talking about POTS imitators. POTS, as you may or may not know, stands for postural orthostatic tachycardia syndrome. So that's when you go from sitting or laying down, and when you go upright, your heart races, and you might have a number of other symptoms. This is something that is super common in people who have joint hypermobility and related conditions, but there are other conditions that can mimic POTS. So I thought it was really important to talk about this. I'm also going to write a newsletter about this, so make sure that you're signed up at Substack at hypermobilitymd.substack.com so you can also see the newsletter that corresponds to this episode.
Aron, you may know a lot of our listeners have brain fog or they might be multitasking, so I thought the newsletter might be helpful. Do you think that's a good idea?

[03:07] Aron: Yeah, it's cheesy, but the show doesn't just end when you turn off the episode. It keeps on going in your inbox.

[03:15] Dr. Linda Bluestein: We've gotten really great feedback on the newsletters, and I'm so grateful to the Human Content team for helping with that, especially Allie. She does such a terrific job sprucing everything up, as Shanti knows, because Shanti always sees the raw versions as they're evolving.
[04:05] So we're going to talk about POTS and how sometimes you might be undergoing treatment for POTS, but it's not really helping as much as you would expect. You might feel like you're doing everything right, but you're still struggling with POTS symptoms. And we know that POTS is definitely a real diagnosis, but it is also a final common pathway for many different conditions. This episode is for you if your POTS treatment isn't working as well as it should, or if you feel like maybe POTS isn't the whole story.
Today isn't about self-diagnosing. It's about knowing when to ask better questions. So we're going to talk about why POTS can be mimicked or amplified by other conditions. We're going to talk about the most common categories of imitators, red flags that suggest something else is contributing, and how to advocate thoughtfully without overwhelming yourself or your clinician.
I want to tell you a little bit more about what inspired this episode. I already mentioned my fitness instructor who was telling me about her POTS diagnosis, and I'm thinking, huh, sounds like there might be more to this story. The other is a question from a listener that I think we're going to have read by Aron. So Aron, tell us what our listener asked.

[04:37] Aron: Yeah, of course. And by the way, I like that we're going to talk about imitators as well, because it just seems like there are a lot of chances that you could otherwise go to Dr. Google and just not know if you stood up too quickly versus it being a serious thing. As somebody who is learning a lot about this in the episode today — yeah. All right. Here's the question. This is sent in by Rochelle.
[05:05] "I was recently diagnosed with pernicious anemia and suspect I may have had it for years without knowing. I didn't realize how unreliable standard B12 blood tests can be or how difficult B12 deficiency is to diagnose. I also didn't know how pernicious anemia commonly co-occurs with EDS, and many of the symptoms overlap with ME/CFS. I'm wondering about best practices for diagnosis and treatment, how pernicious anemia interacts with EDS, MCAS, and POTS, and whether there are things I should be monitoring regularly."

[05:36] Dr. Linda Bluestein: I love this question. So Rochelle's question inspired me to do some research on pernicious anemia. And what happened was, as I was digging into it more and more, I realized that Rochelle's question was super important and that it could actually be almost an entire episode. We're going to address a couple other questions at the end, but we're going to spend most of the time talking about this particular topic today. So I want to thank you all for sending in such fabulous questions, because your feedback and your questions motivate me to dig deeper and create better content for you. So thank you, thank you, thank you to all the listeners for your incredible support and your incredible feedback and fabulous questions.
[06:19] So let's first talk about what POTS actually is and what it isn't. POTS describes a physiologic pattern where your heart rate goes excessively fast and has to be accompanied by some other symptoms. So it could be heat and cold intolerance, it could be digestive problems. There's a variety of things that can happen. You can get dizzy when you stand up and things like that. And I love what you said at the beginning, Aron, because a super important point is that all of us can have this happen on occasion if we are dehydrated or if we've been sick recently, or if we've been on a really long flight — so we've been just kind of sitting for a long time. So having this happen occasionally is not a problem, but for some people this happens all the time. They may faint or they may get near fainting, but fainting is not required. A lot of people have heard this myth that you have to faint in order to have POTS. No, you don't.
[07:15] So POTS is a problem with the autonomic nervous system, or the automatic nervous system, and that's what controls all of the things that we don't think about — our breathing, our digestion, our temperature regulation, the size of our pupils, our heart rate, blood pressure, et cetera. So when someone does have POTS, we know that they have a problem with their nervous system, but the diagnosis itself doesn't tell us why the nervous system is dysregulated, because there are multiple different conditions that can actually lead to the same autonomic output.
[07:46] So POTS can be primary, secondary, or mixed. You could have POTS plus another driver, you could have just POTS, or you could have POTS and other conditions. There's a saying: a person can have as many conditions as they damn well please. So unfortunately, people can have multiple conditions. So if we label the pattern but we don't actually look for the driver, then we can really stall our progress. So we really want to be looking for some other things.
[08:10] So number one, the first category that I want to think about because of Rochelle's question is nutrient deficiencies. We know B12 is one of them because this was of course inspired by her question about B12 deficiency. But we're going to talk about some others also. First, let's talk about B12 deficiency and pernicious anemia. This is a common reversible contributor to POTS-like symptoms that is frequently missed because routine labs can actually be normal, especially early on in this condition.
[08:44] There are several other nutrient deficiencies that can also impair autonomic and neurologic function and closely mimic POTS. But among those, B12 deficiency, especially pernicious anemia, deserves special attention because it is commonly underrecognized and frequently misinterpreted as, quote, just POTS. Some of the other key deficiencies we want to be thinking about include iron deficiency, with or without anemia, that can present as exercise intolerance, palpitations, and dyspnea or shortness of breath. Folate deficiency, which can present as fatigue and cognitive symptoms — and we know brain fog is super common in POTS. Magnesium deficiency, which can present as palpitations, tremor, anxiety, poor sleep, poor pain control, muscle cramps, and things like that. Also thiamine deficiency, which is vitamin B1, and that can present with autonomic dysfunction, fatigue, and GI symptoms. And as I mentioned, B12 deficiency or pernicious anemia can present with fatigue, dizziness, neuropathy, brain fog, and tachycardia.

[09:54] Aron: Is the folate deficiency generally tied to pregnancy? I feel like I've heard that the two go hand in hand, or maybe that's a folic acid deficit.

[10:02] Dr. Linda Bluestein: So women are told to take a folate supplement in pregnancy, and that is to prevent spinal cord problems in the baby, like spina bifida. So it's funny because that was something that was recommended quite a few years ago when there was not as much folate being supplemented in a lot of our foods. But yes, you're right, there is a recommendation for that in pregnancy and it's part of most multivitamins.

[10:29] Aron: Okay. So POTS-like symptoms could occur when you're pregnant then, and it could be due to that deficiency?

[10:35] Dr. Linda Bluestein: I would say that it's more that you want to make sure that you are at least sufficient in pregnancy, and that's why they're recommended to take the folate, more so than that pregnant women are at higher risk of folate deficiency. If someone listening right now disagrees with me, feel free to send me a message. I'm not an expert in pregnancy, but I don't think that women who are pregnant are at increased risk of folate deficiency. I think the reason a prenatal multivitamin is recommended is to make sure that you're covering your bases and you have at least sufficient levels of a number of different nutrients, if that makes sense.

[11:16] Aron: I would imagine there are a million comorbidities that come with different nutrient deficiencies during pregnancy anyway.

[11:23] Dr. Linda Bluestein: Right. You're growing another human, so you want to make sure you're doing that to the best of your abilities — especially early on, because little things early on can have a huge impact on that baby when it's developing all its organs. Later on in the pregnancy it's less critical, but in the early stages it's really important. So that's why they often say women who are even contemplating pregnancy should start taking a prenatal vitamin, because you don't know — you might get pregnant and you might not know for several weeks. Thank you for asking that question. That's a great point.
[11:55] Okay, so these deficiencies that I mentioned can directly affect autonomic and neurologic function, and the symptom overlap with POTS is huge. They can be neurologic, they can involve brain fog, they can involve tachycardia. And with a lot of these things, labs can appear normal, or at least partly normal. So it's really, really important to be looking for these things because they are so often missed.
[12:21] So now let's dig into pernicious anemia and why that is so often missed. Pernicious anemia is an autoimmune absorption disorder — it's not a dietary problem. The immune system attacks intrinsic factor and parietal cells in the GI tract, impairing B12 absorption. And the autoimmunity is present for years before classic lab abnormalities appear.
[12:48] Some important factors about this concern the labs that we normally look for. And that's why I was blown away when I was looking this up — I was like, whoa, I didn't know a lot of this stuff. So we normally look at the hemoglobin, because if you hear "anemia," normally that means the hemoglobin is low, but the hemoglobin can be normal early on. And something called the MCV, which gives you an idea about the size of the red blood cells — that can also be normal early on. Even the serum B12 and something called MMA, or methylmalonic acid, can also be normal. In fact, roughly 30 to 40% of B12-deficient patients never develop classic anemia, and only about 60% of B12-deficient patients show an elevated MCV.
[13:30] I started doing all this research after Rochelle asked this question and I was blown away by all this information. That's why I was like, wow, we really have to talk about this.
So why do normal labs not rule this out? Number one, neurologic symptoms often come first. Things like fatigue, brain fog, neuropathy, dizziness, and balance issues can precede the anemia, and the changes in the labs can be late findings. Also, if we have large liver stores of B12, that can mask early disease. The liver can actually store 3 to 5 years of vitamin B12, and during that time absorption can be impaired, but serum B12 and MMA will remain normal. The MMA actually reflects current deficiency, not future risk — it will only rise once intracellular B12-dependent reactions are impaired. So early disease or fluctuating absorption can leave MMA normal.
[14:27] Also, the MCV can be easily masked. B12 deficiency causes the MCV to go up, but iron deficiency causes the MCV to go down. So if you have two deficiencies — one that makes your red cells too big and one that makes your red cells too small — on average they can actually look normal. If you have coexisting iron deficiency, inflammation, or mixed deficiencies, that can actually normalize the MCV. But in that case, the red cell distribution width, or RDW, can actually be elevated, which tells you that you have a wide variety of red cell sizes.
[15:14] So when it comes to diagnosis, in addition to serum B12, some other tests that are useful include, as I mentioned, MMA, homocysteine, intrinsic factor antibodies — which is highly specific — and parietal cell antibodies, which is supportive but less specific. Remember, a normal B12 level does not exclude tissue-level deficiency.

[15:44] Aron: That's fascinating. So if the liver is storing years of B12 and pernicious anemia results in a deficiency, I could be experiencing pernicious anemia for a long time and not even have any tests showing it. Plus what you're talking about with the blood cell sizing — it's like the law of averages gets you on that one. I'd imagine the anxiety I have hearing that is like, okay, how would I know? What should I be thinking about or looking out for if the tests aren't even going to show it? It's fascinating from a biology standpoint, but from a self-care standpoint, it's like — oh, that's creepy. It can just sneak in there.

[16:48] Dr. Linda Bluestein: Right. So I'm going to tell you another caveat about this. What, Rochelle — thank you so much for your question, because again, I was just blown away. The more I dug into this, the more I was like, this is important.
[16:59] So I have a family member — not going to name them — but I have a family member who I've really helped a lot with their medical care. They're not anemic. Their MCV is normal, but their RDW has been crazy high for years and everyone ignores it, because when most of us look at a CBC — which is a complete blood count — we look at the hemoglobin, the hematocrit, we look at the white cell count. For the most part, we don't pay a whole lot of attention to the MCV if someone's not anemic, and we often don't pay much attention to the RDW. So when I learned this, I was like, oh my gosh.
[17:31] So I sent a portal message to that person's doctor, because I'm very involved in their care. I said, would you please order these additional tests for my family member, because this RDW has been high for years. Their B12 has been checked, and I think because of their age the doctor is aware they're at risk for B12 deficiency. But I think this person, being an internist, might not be looking for the subtle signs like the elevated RDW and thinking about — if you're older and you're fatigued, it can be written off to a whole lot of things. And the other challenging thing is that fatigue is a very nonspecific symptom.
[18:15] But these tests are so easy to do. So if somebody is fatigued and they have maybe some of these other symptoms like brain fog, maybe some tingling in their extremities — which some people can really sense early on and other people don't — doing the intrinsic factor antibody test and the parietal cell antibody test is quite easy to do and probably covered by most insurance companies. So I think we should have a low threshold, because those are just blood tests. We're not talking about doing a biopsy or some invasive procedure.

[18:47] Aron: It's fascinating how important this is for people to know about, both for self-advocacy and also as practitioners. It sounds like it's such a needle-in-a-haystack thing to be looking for and thinking about.

[19:00] Dr. Linda Bluestein: And names can really throw us off. I feel like this is very much like vitamin D — vitamin D is not a vitamin, it's a hormone. Pernicious anemia doesn't always have anemia.

[19:11] Aron: I always knew of "anemic," right? I don't think of B12 deficiencies or nerve development and growth from that when I hear anemia.

[19:22] Dr. Linda Bluestein: Yeah. And the B12 levels that are considered optimal — that's the other thing. When we look at lab values on a LabCorp or Quest report, when they give us the so-called normal range, that doesn't necessarily mean it's the optimal range. So the optimal range for B12 is actually probably higher than what Quest, LabCorp, ARUP, and Mayo Clinic report. So that's another important thing to consider. Your level might be in the low-normal range, but that might not be in the optimal range.
[19:54] Okay. There are other causes of B12 deficiency besides pernicious anemia. One of those is dietary insufficiency, and this is also super important because more and more people are vegan, vegetarian, etc. People who are vegan and vegetarian are at increased risk of B12 deficiency. Also, malabsorption syndromes like celiac disease, inflammatory bowel disease, and gastric or bariatric surgery will increase your risk. And there are also medication-related causes. So I recommend H1 and H2 blockers all the time, but H2 blockers can increase your risk of B12 deficiency. So can proton pump inhibitors — drugs like omeprazole that are prescribed sometimes almost like water. People are prescribing these drugs like, here, just take this proton pump inhibitor indefinitely, without really thinking about the endpoint. Those medications also can increase the risk of B12 deficiency, as can metformin, which is a diabetes drug that is also used for longevity, and also chronic use of some antibiotics or anti-seizure medications. Another thing that can increase the risk is chronic GI inflammation or dysbiosis. So like I said, when I started digging into this, I was blown away and I was like, we definitely have to talk about this.

[21:10] Aron: It's important. It feels like very good information to have. It's easy to start worrying — not from a hypochondriac disposition, but more of just — it feels so important to know about without worrying about it, and to be able to keep attention on the right things. I don't know if you have any advice on this. I'm trying to think about both how I'm feeling and, I imagine, a lot of the audience who are advocates for themselves — how to know which of these things to be nervous about and pay attention to, versus just being aware of. Like, I hear you talking about dietary insufficiencies with veganism. That's something I don't want to use to be obnoxiously overcritical with friends who are vegans. At what point are you being too critical about it?

[21:59] Dr. Linda Bluestein: Exactly. And I often get my best ideas when I'm exercising. I was at my exercise class this morning — actually, it was the instructor who has POTS. I was in her class this morning and I was thinking we need to do an entire episode on this. This is my plan for a soon-to-come solo episode on the most common mistakes that I see people make. And exactly what you just said is one of the things that so many of us end up doing — we end up chasing all these different threads and we don't know when to give up.
[22:28] I had a mom literally ask me yesterday, for her 15-year-old, "How do I know when I should just try these things?" And I said, well, we just met, we just had this coaching session, so I would recommend that you try the things that I am suggesting and don't go have another appointment next week and start trying those things, because you need to give these things time to actually see if they work or not.
[22:52] So one suggestion that I have for people is: try not to ping-pong between different things, but maybe as you learn about different things like pernicious anemia and B12 deficiency, you put that on a list. Like, if I'm not better in XYZ number of months, I'm going to revisit these things and maybe ask my doctor for some more testing — if I think that I'm still having symptoms consistent with that diagnosis. Because otherwise, yeah, you can drive yourself absolutely crazy.

[23:20] Aron: I actually use project management tools for tracking — you know, the kind people use for work tasks. I actually made one a long time ago, because I have some chronic health issues. I list things that I learn about that I want to look into and I sort them. I'm like, okay, these are the top 3 that I'll bring up in my next physical. I don't want to drive my doctor crazy by constantly sorting through everything. Especially if you're really into heavy research on your own and you're becoming an armchair physician — I agree, it's so easy to fall down that rabbit hole of suddenly diagnosing yourself with a million things and racking up healthcare costs that are needless and causing yourself a lot of angst.

[24:07] Dr. Linda Bluestein: So many people feel so responsible because they know that their doctors are not able to take the time or invest the amount of energy that they are. You care more about your health, hopefully, than anybody else. So a lot of people, yes, they do deep, deep research. And I do truly learn a ton from my patients and my clients because they'll bring things to me and then I go and research it independently. And I sometimes will message some of my patients or clients out of the blue and say, "Hey, I just learned this particular thing" — either from interviewing a guest on my podcast or something that someone else asked — and this other person will come to mind.
That's one reason why I love the fact that my medical practice is small enough that I know everyone who's an active patient. I can be thinking, wait, is this something that I missed in this particular person? Maybe this is something that's going on with them. So I love that you have a way to prioritize things like that, because it helps you and it helps your clinician and it helps ease your anxiety. The brain doesn't like unfinished projects or unfinished information. So if you take that and you put it on a spreadsheet somewhere, you can put it out of your mind because you know you have it written down and you have your list of things to explore if you're kind of stalling out on your current treatment.

[25:29] Aron: It's actually one of the best things I feel about in healthcare. There are a lot of dangers with it, but I've noticed a lot of people I know use ChatGPT — actually dropping in their blood work or something — and getting comfort from just one other external processor to say, not for diagnosis, and I'm sure you'd be the first to say it, I'll say it too — no one should ever rely on it for diagnosis. But I know a number of people who, as they're getting older and have so many things to keep an eye on, use that as extra validation of like, okay, great, I'm not crazy, things are okay.

[26:06] Dr. Linda Bluestein: Yeah. And it can be super helpful. I will have patients send me a message over the portal and they'll say, "I looked this up on ChatGPT. This is what ChatGPT said. What do you think?" And I often might put it in ChatGPT myself, because it's a tool. It's a tool that all of us can use. There are obviously other platforms besides ChatGPT, but we can use these tools as a way of refining and really kind of distilling things down.
[26:36] And it's the whole junk-in, junk-out principle. The better information that you put in, in general, the better information that you get out. And the more you learn to use these things, you take things with a grain of salt but also realize that as much as you're giving that tool information, it doesn't know the whole picture and it doesn't necessarily have clinical expertise.
[27:13] One of the things we're going to do — I recently hired a PA to join me on the Bendy Bodies team. She is also doing coaching and her name is Rebecca Gluck, and I'm so excited to have her on the team. We're going to do a webinar, and in particular we're going to be talking about why coaching is still important even though we have things like ChatGPT, because there are still things that we can add to your whole plan even though you have access to these great AI tools.

[27:32] Aron: Yeah. I think it could be used as a tool for comfort of knowing you're being diligent, rather than being reliant on it.

[27:38] Dr. Linda Bluestein: Yeah, exactly. Cool.

[27:41] Aron: Thanks for sharing your thoughts on that.

[27:42] Dr. Linda Bluestein: Yeah, of course. I love that. So that's a great tip. In fact, that's a great hypermobility hack right there that you just shared. I think we probably have a hack for the end of this episode, but you gave us a great one and I love that.
[27:53] Okay, so I want to mention something here about mast cell activation syndrome. For people that have mast cell activation, they might have more inflammation in their GI tract and that can actually cause more absorption problems. So that can increase your risk of B12 deficiency, and/or you might react poorly to supplements with B12. So if you have MCAS, you might want to think about how that actually might also influence your levels of B12 in your body. Some people do better with injections or preservative-free formulations.
[28:24] And if you have a symptom flare, that doesn't necessarily mean that you need more B12. I've had some people take crazy amounts of B12 — in fact, I had somebody the other day as a patient and I was like, why are you taking so much B12? And she said, I don't know. So it's always important to be thinking about the supplements that you're taking. What dose are you taking? Why are you taking it? What are the possible negative effects of supplementation, and what dose is appropriate for you? Because that's where it can be really tricky — and where you might look things up on ChatGPT but not get the full picture.
[29:02] So this matters a lot in POTS because B12 deficiency can worsen those symptoms. You could have B12 deficiency and POTS, and treating your B12 deficiency might not completely resolve all your symptoms, but if you miss it, that could significantly limit your improvement. If you do have pernicious anemia, that typically requires lifelong B12 replacement, and periodic monitoring is extremely important, especially if your symptoms evolve or if you have other autoimmune conditions.
[29:29] Okay, so a takeaway for this is: if you have persistent fatigue or neurologic symptoms, especially with EDS, POTS, ME/CFS, autoimmune disease, GI disorders, or older age, normal routine labs do not rule out B12 deficiency. Ask about testing beyond a standard B12 level, including intrinsic factor and parietal cell antibodies.
[29:50] Okay, so let's shift gears and talk a little bit about thiamine deficiency in POTS and EDS. Thiamine, as I mentioned, is vitamin B1, and it is essential for cellular energy production, mitochondrial function, and autonomic nervous system regulation. Deficiency of thiamine can impair energy metabolism and autonomic stability and produce symptoms that either closely mimic or worsen POTS.
[30:15] Some of those symptoms include fatigue and severe exercise intolerance, brain fog and cognitive slowing, dizziness and orthostatic intolerance, tachycardia and palpitations, GI dysmotility and nausea and bloating, and neuropathic symptoms like weakness or heaviness in the limbs.
[30:33] People with EDS or POTS might be at higher risk for thiamine deficiency because of a few things. Number one, restricted or limited diets. Number two, chronic GI symptoms and malabsorption. Also increased metabolic demand from chronic illness, prolonged physiologic stress, and post-infectious or inflammatory states.
[30:52] Somebody on Substack recently asked me about thiamine deficiency, and I told her, perfect, I'm going to add this into my solo episode that I'm recording tomorrow. Some red flags we want to think about that should raise suspicion for thiamine deficiency include disproportionate fatigue compared to orthostatic findings, rapid exhaustion or worsening symptoms with minimal exertion, prominent GI dysmotility with poor intake, neurologic symptoms not explained by imaging or routine labs, autonomic symptoms that worsen during illness or stress, minimal response to typical POTS therapies, and partial or incomplete response to B12 or iron repletion.
[31:28] Like pernicious anemia and B12 deficiency, thiamine deficiency can also exist when routine labs are normal. This makes it really, really tricky. Earlier functional deficiency might not be captured by standard blood tests, and symptoms can often precede laboratory abnormalities. Testing that you want to consider includes whole blood thiamine levels, which is preferred over serum levels; erythrocyte transketolase activity, which is a functional assessment not always available in every lab; and you also want to consider testing in the context of symptoms, not just as a screening test alone. Normal levels do not fully exclude functional deficiency, especially if you have chronic illness.
[32:08] Both thiamine and B12 deficiency can cause fatigue, brain fog, neuropathy, and autonomic symptoms. B12 deficiency more often causes sensory neuropathy and anemia, but that's often late. Thiamine deficiency more often causes problems with energy metabolism and autonomic stability, but both can coexist and compound symptoms. So thiamine deficiency doesn't cause POTS, but it can significantly worsen it or mimic it by impairing cellular energy and autonomic regulation.
[32:38] So do you have a question, Aron, or should we take a quick break?

[32:41] Aron: I think the only question I had — which I don't know if anyone else is going to wonder — but you were talking about one of the ways to test for thiamine deficiency, testing a certain kind of activity. How did you say that? What was that — erythrocyte transketolase, something like that?

[33:04] Dr. Linda Bluestein: Transketolase. I think I'm saying that right. Erythrocyte transketolase activity.

[33:09] Aron: Erythrocyte. Do you know what that is? I'm curious.

[33:17] Dr. Linda Bluestein: Yeah. Erythrocytes are red blood cells. I honestly had never heard of this test before either.

[33:22] Aron: Me neither. I was just curious. It's interesting.

[33:26] Dr. Linda Bluestein: Super interesting. Okay, how about we take a quick break and when we come back, we're going to talk about some other POTS mimickers. We'll be right back.
[35:43] Okay, so we're back, and we are joined today by Aron, who's one of the producers from Human Content, and I'm so happy to have you here, Aron. Thank you so much for joining me.

[35:51] Aron: Glad to be here. Thanks for bearing with my questions. I'm definitely very curious about all this.

[35:57] Dr. Linda Bluestein: It's one of those things where the more you learn, the more you realize that you don't know. In fact, one of our guests the other day — we interviewed Dr. Rachel Rubin last week, and she literally said, "The more I learn, the more I realize I don't know." And I feel like that every day. And then we interviewed Dr. Andrew Callan the following day, who literally said the exact same thing. And I was like, wow, it's definitely a thing.

[36:22] Aron: Smart people know how little they know, right?

[36:24] Dr. Linda Bluestein: Yes. I hope that's the case and not just that that's how little we actually know. Okay, so next let's talk about endocrine and hormonal mimics.
[36:33] So we know that things like thyroid disease — you can be hypothyroid or hyperthyroid, meaning that your thyroid is either underactive or overactive — and both of those can affect your heart rate, your blood pressure, your temperature tolerance, and things like that. So either one can make it more likely to think that you have POTS, although being hyperthyroid is more likely to raise your heart rate and make you intolerant to heat, and that's probably more consistent with a POTS mimicker rather than hypothyroidism.
[37:07] You asked earlier about pregnancy, and an interesting thing about pregnancy is that after pregnancy you can get postpartum thyroiditis. This happened to me — I made antibodies to my own thyroid gland. After pregnancy, I was first hyperthyroid, then I became hypothyroid. My husband likes to tell the story that when I was hyperthyroid, I was not in a rush to see an endocrinologist because I was losing weight, and although I was more anxious than normal, I was like, you know, this is great, I'm losing the pregnancy weight. And then literally I woke up one morning and I could tell my thyroid had shut off — I was suddenly hypothyroid. I knew it for a fact, even though I didn't know what postpartum thyroiditis was. I saw the endocrinologist at the hospital, he did the labs, and it turned out I was right. And now all of a sudden I'm like, this is a medical emergency, because you're lethargic, you're gaining weight, and things like that.
[38:03] So thyroid disease is definitely an important mimicker of POTS, especially hyperthyroidism. And sometimes we need to do more than just check the TSH in order to determine if a person is hyperthyroid — we also need to check things like antibodies to look for Hashimoto's.
[38:20] Another thing is adrenal insufficiency. Our adrenal glands sit on top of our kidneys and they make all kinds of important hormones. We can have relative adrenal insufficiency or we can have complete adrenal failure, but either one can cause severe fatigue, brain fog, and all kinds of symptoms that can look like POTS. Also, diabetes and prediabetes can cause autonomic neuropathy. We also want to be thinking about perimenopause, menopause, and other hormone fluctuations.
[38:50] So these endocrine things are really, really important to be thinking about, and there are things that a lot of doctors wouldn't necessarily be considering when they're evaluating you for possible POTS — especially if you go to a cardiologist, because a lot of cardiologists are going to be so focused on the heart, understandably, that's their area of expertise. So they might not be the right person to ask, "Could my hormones be involved?" But maybe you could ask them for a referral to an endocrinologist if they see you and they're like, I don't think it's POTS, or I don't think what we're finding here is explaining your symptoms.

[39:18] Aron: I can imagine it could also be misconstrued as potentially narcoleptic.

[39:25] Dr. Linda Bluestein: Interesting. Yeah. That's an interesting one — people with sleep problems can definitely have severe worsening of their POTS, and if you don't treat the underlying sleep problems, you're not going to make improvements on the POTS. And narcolepsy would definitely be another thing to consider in there.

[39:45] Aron: It seems like it could really mask it.

[39:48] Dr. Linda Bluestein: Yeah, definitely. If your symptoms are fluctuating a lot, you definitely want to be considering hormones.
[39:55] The next thing we want to talk about is mast cell activation and histamine disorders. So we don't want to turn everything into MCAS — I feel like sometimes it might sound like I'm doing that — but there are a lot of things that can involve mast cell activation and/or present like mast cell activation type problems. Some of the things that we might see here include flushing, tachycardia, and presyncope. We might see gastrointestinal symptoms that are triggered by food, stress, or other environmental factors. There are people who can't go down the detergent aisle at Target because it literally makes them sick. Those people definitely have mast cells that are more sensitive and/or they have multiple chemical intolerance.
[40:36] Other things that can come along with mast cell activation include temperature sensitivity, itching, and anxiety. Mast cells can drive POTS-like symptoms or can coexist with POTS. We know that mast cell mediators — of which there are over 1,000 — can actually destabilize heart rate and blood pressure. Things like meals, heat, stress, infections, and medications are common triggers. So treating mast cell activation can significantly reduce autonomic symptom burden. If symptoms worsen after environmental exposures, meals, heat, or stress, mast cells should definitely be a part of the conversation.
[41:12] Okay, so the next section we want to be thinking about is cardiopulmonary concerns and medication effects. So there can be primary cardiac causes of tachycardia — things like inappropriate sinus tachycardia, supraventricular arrhythmias, which are abnormal heart rhythms that start from the top part of the heart. The heart has 4 chambers: 2 top chambers, 2 bottom chambers. Supraventricular arrhythmias start in the top chambers. You can also have structural heart disease, which is very rare, but that's also an important consideration. Also pulmonary disease or deconditioning after an illness, which we already kind of mentioned earlier.
[41:46] So if a person has sustained tachycardia at rest, it's important to get a cardiac evaluation. We also want to think about medication effects but also medication withdrawal. I think we really often think about what happens when we start a medication, but we often don't think about what happens when we are weaning off or stopping one. Most people know caffeine can raise the heart rate, but things like SSRIs or SNRIs can also affect the heart rate when you're starting or stopping them. Also benzodiazepines — things like alprazolam or Xanax — can also influence this, as can drugs like Valium, antihypertensives, and diuretics. So you always want to look at the timing of symptom onset, because that can give you important clues. Also, remember that sometimes the thing that started the problem is not the thing that perpetuates the problem.
[42:34] We're almost done with these POTS mimickers, but the next section is sleep, chronic infection, and post-infectious syndromes. Sleep apnea, insomnia, and circadian rhythm disruption are important, as is non-restorative sleep. Also, post-viral syndromes, including long COVID and chronic or reactivated infections, can also cause POTS-like symptoms. Poor sleep can destabilize autonomic regulation, and post-infectious autonomic dysfunction is common and often underrecognized. If you have symptom onset after infection, that is a very important clue. As we talked about earlier, all other treatments will fail if poor sleep is not addressed.
[43:10] I want to talk a little bit about neurologic and autoimmune conditions. These are also important to consider. Things like small fiber neuropathy, which we know is a lot more common in people with EDS and HSD. Cervical spine instability or compression is very important also, because the sympathetic chain runs down the front of the neck, so instability in the cervical spine can cause problems with that sympathetic chain. Also, Chiari malformation or Chiari deformity, which is where the brainstem isn't fully encased within the skull but actually sags and can be coming through the foramen magnum — which is the hole at the base of the skull. Also things like neurodegenerative diseases and stiff person syndrome.
[43:50] Some of the autoimmune considerations include Sjögren's syndrome, lupus, celiac disease, and autoimmune autonomic ganglionopathy. So if you have sensory symptoms plus autonomic symptoms, that might be pointing to a neurologic driver. Red flags would include progressive neurologic changes, new weakness, balance issues, or sensory loss. Things like dry eyes, dry mouth, or malabsorption can also suggest autoimmune disease.
[44:13] Red flags that should prompt a broader workup include symptom worsening despite appropriate POTS treatment, severe fatigue out of proportion to other findings, neurologic symptoms, signs of GI malabsorption, weight loss or nutritional abnormalities, nighttime tachycardia, symptoms at rest or without position changes, new onset later in life, strong personal or family autonomic history, and lab patterns that don't quite fit — for example, elevated RDW, low ferritin, or borderline B12.
[44:40] This doesn't automatically mean that something is dangerous. And as we said, sometimes it's a good idea to park things, like Aron suggested. I love that — that's probably your best hack for the day. Because we want to make sure that we're not missing things, but at the same time, we don't want to drive ourselves crazy chasing down every little possibility.

[45:01] Aron: Yeah. Also, one thing you mentioned there is interesting to me, which is family history. A lot of people seem to wait until things are bad before they look into a family history of any particular condition. And I am not a healthcare provider — I'm a podcast producer, so take this all with a grain of salt. But I have definitely become a big advocate of getting family histories while family members and relatives are alive and functional. Just my understanding is that the more you know, the more you can tell your provider to help figure out these genetic trends. I don't know if that's something you've dealt with with patients, but it took me a long time before I actually stopped and compiled all that information across all my relatives to figure out what trends existed that I didn't even know about in my genetics.

[45:58] Dr. Linda Bluestein: Okay. So you just gave us a second awesome hack. I love that. That's really smart because, you know, even if they're still alive, maybe they're in a situation where they no longer remember. So get that information while you can. That's a great idea.

[46:11] Aron: I'm lucky I have an anxious mother, so I just had to say, "Anyone sick in our family?" And she gave me a whole essay on everyone back through Eastern Europe to now.

[46:19] Dr. Linda Bluestein: And then there are other people that you really have to pull it out of them. So it's important to keep that in mind.
[46:27] Yeah. Speaking of anxiety, things like psychological stress and trauma — they don't cause POTS, but they can definitely amplify the symptoms. People who have chronic stress, some of us just stay in a threatened state in our nervous system. Our nervous system does not feel safe. So if you can employ some tools — and there are lots of tools out there, like vagus nerve stimulation, breathing techniques, humming, singing — some of these things can activate the parasympathetic nervous system, help our nervous system feel safe, and that can really help with our POTS-like symptoms.

[47:01] Aron: Yeah. I would imagine just also, these days everyone's a little on edge, a little stressed, with so much going on and so much more news than ever that we're bombarded by, and how much extra stimulus there is from all the electronics we're using and everything else. It seems more and more that it's not even just good advice — it's almost mandatory. If you're going to exist in this world and be functional and stable, you need to have those solutions in place. You need to have a breathing exercise, you need to have self-care routines. That's at least what I've been seeing. Or maybe my Instagram algorithm just knows I'm anxious and sends me all those things. But it looks like it's a non-optional thing at this point to exist in the modern world comfortably.

[47:54] Dr. Linda Bluestein: And what I love about what you just said is that what we really want to be doing is practicing these things when we're less stressed, so that when we're more stressed, we already have the tools in our toolbox and we can employ them more easily. If we wait until we're at our worst and then we try to do breathing exercises or whatever, and we don't normally do those things, we're going to have less success than if we've already practiced them when we're in a better state.

[48:18] Aron: Yeah. I actually — I didn't put it on for this episode — I have this little necklace here. It looks like a little whistle, but it's just a metal tube and it's for cyclical breathing exercises. I wear it to remind myself to do breathing exercises if I'm not being mindful of it. So if I'm changing my shirt and I see my necklace, it reminds me to stop and do that. Sometimes it helps to have external timers or little totems or things to help you remember to do it. Once you're in the anxious, repetitive rinse-and-repeat state, you might forget to stop and do it. So it's good to have externalized tools — at least I've found that.

[48:55] Dr. Linda Bluestein: I totally agree. And it's amazing to me how really small things like that can make a significant difference.

[49:02] Aron: Yep. It's a good thing to do with your partner too — become each other's accountability buddies, not just for exercise and diet, but whether it's a partner or a friend or a relative, have someone to remind each other.

[49:16] Dr. Linda Bluestein: Mm-hmm. Love that. That's brilliant.

[49:17] Aron: That's your healthcare advice from your friendly local podcast producer. Take it as you will.

[49:25] Dr. Linda Bluestein: Love it. Okay. So next, Aron, will you read to us? Sounds like I'm asking you to read a bedtime story.

[49:30] Aron: I'm being told I have to read you a story. Yes. Get into bed, pull up the sheets, get comfy.

[49:37] Dr. Linda Bluestein: Perfect. Okay. So I think we have a voicemail that you're going to read to us.

[49:41] Aron: I am. I'm not going to do an impression, but this is from Evelyn. Hi Doc — we can pretend Evelyn sounds just like me.

[49:48] Dr. Linda Bluestein: Okay.

[49:48] Aron: All right. "Hi, Dr. Bluestein. I recommend to a lot of people who I meet that they listen to this podcast because of how much great information is in it." — I agree, that was me. — "Unfortunately, some of these people are new to the world of hypermobility and EDS. The amount of information and just the number of episodes that you have is overwhelming. Would it be possible for you to identify maybe 3 or 4 episodes as 'getting started' and tag them somewhere on your website? I think that would be a great help for people who are just getting started and learning about hypermobility. Thank you." Good question. I want to know your answer to that too. That's a fair point.

[50:23] Dr. Linda Bluestein: Yeah. So I have to confess — when I read this question and went looking for episodes, there are a lot, and the more recent episodes I feel like are often the better episodes, but at the same time they're deep dives and at a level that for the average person just starting out may not be appropriate. So I love this question from Evelyn. Evelyn, thank you so much. I am going to plan future episodes — in fact, I think we talked about that a little bit at the beginning, common mistakes, some 101-type information. I'm definitely going to plan that. Also go to my Substack newsletter, because based on Evelyn's question I'm also going to be putting some things there.
[51:07] But I think the 3 episodes that I chose were the closest I could pick. So I'm probably not giving them the most raving review right now, but I think Dr. Matthew Watto — which was episode 133 — he's an internist and I was on his podcast, the Curbsiders, to discuss EDS and HSD. When I last talked to them, something like over 40,000 people had listened to that episode. And then he came on —

[51:36] Aron: That conversation resonated with a lot of folks.

[51:40] Dr. Linda Bluestein: Yes. So both the Curbsiders episode that I was on and when he came on my show, this show — and that was episode 133 when he came on — I would recommend those.
[51:52] I would say the other two episodes that I would recommend are episode 129 with Dr. Jill Carnahan, where we talked about mast cells and hidden triggers. What I liked about this episode was the fact that she talked about addressing the nervous system first. One of the questions I wanted to ask her was, you know, what do you do when you have all these symptoms and all these problems? So I think that's a good episode for people to start with, even though it has some high-level information.
[52:16] And also episode 120 with Wendy Wagner, Finding the Right PT, because so many people have tried PT but say it didn't work well enough for them, or a lot of people will say it actually made them worse. But oftentimes it's a matter of finding the right physical therapist. I tell people it's like dating — don't give up the first time you go on a date with somebody. You might have to try out a few people before you find the right one. So that episode with Wendy Wagner is episode 120, and it's really important because physical therapy is a cornerstone of treatment for EDS and HSD, but it is also important to find the right physical therapist. You might not find the right one on the first try. So definitely check out that episode as well. And thank you so much to Evelyn for this fantastic question. I will be creating more content to address your questions, so stay tuned for that.

[53:07] Aron: Dr. Bluestein, I have a question for you.

[53:09] Dr. Linda Bluestein: Sure.

[53:09] Aron: How are you with receiving compliments on the air? Because I really want to read you one more letter. We can have our editor do color correction for the blush. But you might have to just sit and bear it. Can you handle this? I really want to read you this one. Okay. This is what happens when you invite me on — I'm going to read you some praise. All right.
[53:31] "Dear Dr. Bluestein, I heard about your podcast earlier this year in a local EDS Facebook group, and I've gone back and heard almost all of the episodes. I'm a family physician who moved to the US from Canada and a patient with a, quote, trifecta amongst other conditions. I just want to say that not only are you a fantastic podcast host — you know just the right amount of questions and types of questions to ask, when to interject and when to allow the person to speak — you are also doing a fantastic service to all of us as both physicians caring for patients to learn from you and to EDS patients everywhere. I know a ton of work goes on in the background to make this happen. So I wanted to express my deep appreciation for you. I've learned so much that I have gone on to research, and all that Zebra knowledge is inevitably making me a better doctor, but also helping my personal care. I was personally also touched by you sharing your story. It has been a difficult health journey for me as well, and it always helps for us to know that we are not alone in our experiences, even when we experience gaslighting when we are patients ourselves. That type of validation — knowing that someone who is looked up to and amazing at what they do could also experience that too — really helped me. I am truly sorry you experienced everything you did. I hope that people like me who reach out remind you to keep going and doing this great work. I hope we get to meet in person someday." This is from Manpreet, and I couldn't agree more.

[54:52] Dr. Linda Bluestein: That is so sweet. And I say this all the time when I get comments like that — it really means the world to me, Manpreet. Thank you so much. It is a lot of work. And of course, having people like Aron and Shanti and Rob makes it so much better. But it's a lot of work. Comments like that literally keep me going. So thank you so very much.

[55:19] Aron: We didn't discuss this in advance, so I'm just saying this — and Dr. Bluestein would probably have said, oh no, please — but it really is true, everyone. Dr. Bluestein lives and breathes bringing you guys this show and doing it as best as possible and making sure this is of value to you all. So I'm sorry if I'm making you uncomfortable, Dr. B, but as one of your producers and as part of your team — we are led by your passion. And when you get letters from people saying, "I don't know where to begin because there are so many episodes," that's a great problem to have. Like, you've really poured your heart and soul into this show, and it shows.

[55:52] Dr. Linda Bluestein: Oh, that's so sweet. I'm going to cry. That's really sweet. You won't have to hide the blushing — you'll have to hide the crying. That's really sweet. Thank you so much. And I couldn't do it without you guys, so I really appreciate all of you. It's amazing to be able to think about creating the content, writing up questions, figuring out who I want to have on the show, and not having to worry about anything else — that is really, really huge.

[56:16] Aron: Keep writing to our team, everyone listening. You know, there are only so many hours in the day for us to get everything on air, but everything you guys write and say encourages all of us. It's a real community.

[56:29] Dr. Linda Bluestein: Yeah, it is. It's really, really helpful because we will use that information to write newsletters, create social media posts, and we do keep track of which questions we've answered on air and which ones we haven't. So if we haven't answered your question yet on air, you can submit it again. Or you can be patient, but feel free to submit it again if you want.
[56:48] So before we wrap up, I also wanted to share a small but meaningful example of representation that I think many people in the EDS community will recognize right away — because this is something from a Netflix show that gets ambulatory wheelchair use right, without explanation, without judgment. It's a show called Runaway that was recently introduced on Netflix, and they do something that's often misunderstood. There's a character named Anya in the show, and she's shown using a wheelchair in some scenes and standing or walking in other scenes, but there's no commentary about it. Some viewers initially assumed that this was a mistake, but for people with EDS and other chronic conditions, they know that this is very real. They know that their mobility needs change from day to day — even hour to hour — depending on pain, fatigue, dizziness, and joint instability.
[57:38] What makes this especially meaningful is that the actress who plays Anya, Ellie Henry, actually lives with EDS herself and uses a wheelchair in everyday real life. So the show didn't turn her disability into a plot point or something that needed to be explained. It was simply a part of the character's life.
[57:55] This kind of representation really matters. Mobility aids aren't a sign of giving up, and they aren't only for people who can never walk. For many people, wheelchairs are a tool — they can use this tool for conserving energy, reducing pain, and staying engaged in daily life. Seeing this portrayed accurately really helped normalize the reality that disability isn't binary. You can sometimes walk and still genuinely need a wheelchair, and that doesn't require justification.
[58:21] So I want to say thank you to the writers, producers, and everyone involved in Runaway for getting this right. It might seem like a small detail, but for people in the EDS community, this kind of quiet accuracy is really validating and really matters.

[58:34] Aron: So if you know anyone who works on the show, tell them to come on air and talk about it with us.

[58:39] Dr. Linda Bluestein: Yeah, exactly. It would be interesting to hear how that all evolved, right? Wouldn't that be interesting?

[58:42] Aron: How it got through the writer's room too, because someone had to advocate for that storyline. I'm sure it took someone advocating on Breaking Bad for Walt to cover the subject matter of having a son with various needs, but that was almost never the main plot point of the character. The more representation in media, the better — to normalize what constitutes disability and just differences in lifestyle.

[59:14] Dr. Linda Bluestein: For sure. And that leads me to the hypermobility hack, which is directly related to what I just was talking about in this Netflix show.
[59:22] You might have been told at some point to not use pain tools — things like braces, mobility aids, and other supports. I took a family member to one of these pain programs that was, I think, 3 days long. During that time we kept getting pitched on their 3-week program. But one of the things they taught was: don't use these pain tools. Don't be signaling to everyone that you have a problem. And while I understand the message they were trying to share, and maybe this approach can be useful in some situations, it doesn't apply to everyone, and it doesn't necessarily fit people with connective tissue disorders or structural instability.
[1:00:02] Because for many of us with EDS and other fluctuating conditions, these mobility aids — we're not using them as a reminder of our pain. They're tools to actually reduce mechanical stress, prevent flares, and allow our nervous system to stay calmer. Using a support when we need it can actually help decrease pain input and make it easier to stay active and engaged, rather than pushing through and paying for it later.
[1:00:22] When I went to my exercise class this morning, I was kind of covered in braces. I had both of my knee braces on, which I pretty much always wear, but today my elbow was hurting and my wrist was hurting, so I had more braces on than usual. And some of these people would say, "You shouldn't do that." And I think that's wrong and bad advice.
[1:00:42] The goal isn't necessarily to avoid these tools at all costs, but to use the right tools at the right time for the right reasons. If something helps you conserve energy, move more safely, or participate in your life, that's not reinforcing pain — that's smart, adaptive self-care. So that's your hack for the day.
Aron, this was super fun.

[1:00:59] Aron: Dr. Bluestein, thank you for having me on. It was fun to do this with you.

[1:01:02] Dr. Linda Bluestein: So that's it for today's episode. Thank you so much for your fantastic questions. Please keep sending them into bendybodiespodcast.com for a chance to be featured in a future episode. Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, the Bendy Bulletin, which you can find on Substack at hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood. And don't forget, full video episodes are available every week on YouTube at Bendy Bodies Podcast.
[1:01:45] As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the services page at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at HypermobilityMD.
[1:02:03] As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also want to share some of their helpful resources. For questions or appointment inquiries, you can contact the UVA EDS Center at [email protected]. Again, that's the letter R as in Robert, UVA EDS Center at uvahealth.org. You can find answers to common questions at uvahealth.com/support/eds/FAQ.
[1:02:33] Our incredible production team is Human Content. You can find them on TikTok and Instagram at Human Content Pods. As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements made on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare provider regarding your own care. For more information about the Bendy Bodies Program disclaimer and ethics policy, submission verification and licensing terms, HIPAA release terms, or to get in touch with us, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.