E183: Nutrient Deficiencies in POTS with Nutritionist Jill Brook

Episode 183 December 26, 2023 00:27:16
E183: Nutrient Deficiencies in POTS with Nutritionist Jill Brook
The POTScast
E183: Nutrient Deficiencies in POTS with Nutritionist Jill Brook

Dec 26 2023 | 00:27:16

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Hosted By

Cathy Pederson Jill Brook

Show Notes

In this episode, Nutritionist Jill Brook reviews the research findings on nutrient deficiencies in POTS, shares some tips, and directs listeners to a great resource for finding which lab tests are recommended by our Medical Advisory Board to determine whether nutrient imbalances may be a factor for you. With Jill’s husband as this week’s interviewer, we also learn about some nutrient experiments and misadventures in her own POTS journey.

You can read the transcript for this episode here: http://tinyurl.com/potscast183

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Episode Transcript

Nutrient Deficiencies in POTS [00:00:00] Mike Brook: Hello POTS patients and fellow people who care about POTS patients as I do. This is Mike Brook, your occasional host, and today we are going to interview your regular host Jill Brook. You'll recall that she is a longtime nutritionist in California. She holds degrees from Princeton and UCLA. She's the Nutrition Consultant to Dysautonomia Clinic, Research Liaison to Standing Up for POTS. And, she is my wife of, I'm looking at my watch, 23 and a half years. So, thanks for being the guest today, Jill. [00:00:39] Jill Brook: Thank you for hosting. [00:00:41] Mike Brook: So, what are we going to talk about today? [00:00:43] Jill Brook: We're talking about four studies that discuss nutrient deficiencies in POTS and a website that I think everybody should check out because it lists the lab tests recommended by one of our medical advisors showing the nutritional labs that she orders for her dysautonomia patients. [00:01:01] Mike Brook: okay, great. So, why are we only, why four studies? I mean, shouldn't we look at, you know, 40 studies? [00:01:08] Jill Brook: We should, but four is all that there is. [00:01:12] Mike Brook: Aha! Okay, so we're looking at all of them. So this is a hundred percent. All right, I bet there's a lot of good stuff in there. So let's give the normal caveat, that this isn't dietary or medical advice, it's just information that patients could use to have informed discussions with their medical teams about what's right for them. All right, well, let's get going. What's the first one? [00:01:35] Jill Brook: Okay, let's start with the strongest study. This one was done by Dr. Svetlana Blitshteyn, who is a medical advisor to us here at Standing Up to POTS. And I do work for her at Dysautonomia Clinic, in full disclosure. And she noticed that vitamin B1, or Thiamin deficiency had a lot of symptom overlap with POTS symptoms. [00:01:57] Mike Brook: Okay, well, let's, let's talk about the symptoms. What were they and how did they overlap? [00:02:04] Jill Brook: So there can be a lot of different symptoms associated with thiamin deficiency, but some of them are rapid heart rate, fatigue, nausea, loss of appetite, irritability, nerve damage, numbness and tingling in the extremities. Are these sounding familiar? So she wondered if some patients might have a thiamin deficiency, either contributing to their POTS symptoms or exacerbating them. [00:02:30] Mike Brook: So that does sound a lot like the typical lists of of POTS symptoms. But speaking about a thiamin deficiency, is that a common thing? [00:02:40] Jill Brook: No, at least in the United States, it's rare because thiamin is in a lot of common foods like grains, legumes, and meat. But people who either have trouble eating or digesting normally are at higher risk and POTS patients obviously have all sorts of reasons why they may struggle to either eat or digest normally. [00:03:01] Mike Brook: What are some of those reasons? [00:03:04] Jill Brook: Oh, like nausea, gastroparesis. We're known to have elevated rates of celiac disease, median arcuate ligament syndrome or MALS that makes eating painful. There's lots of gut motility issues. And you know, these things are not POTS specific, but in case anyone has had bariatric surgery or has had Alcohol dependence or HIV aids or diabetes, those things are associated with higher risk of thiamine deficiency. And then just a lot of medications can lower thiamine levels. Although I did look and the drugs listed on the N I H fat sheet for lowering thiamine, were not ones typically used for pots. It was a blood pressure drug, Lasix and a chemotherapy drug. But so there's just all that whole huge. family of reasons why your digestion or eating might not be quite adequate. [00:03:59] Mike Brook: Okay, so let's get to the study. So the study that was done by... Dr. Blitshteyn. So how did the study work and what were the findings? [00:04:08] Jill Brook: So she looked at 65 consecutive POTS patients at her dysautonomia clinic. She took their blood levels of thiamine and saw that Four of the 65 were low, not truly deficient, and that's important, they were just low in range, but those four patients supplemented with 100 milligrams of thiamine per day, and three of the four saw no difference, but one of them got a lot better and pretty quickly. So Dr. Blitshteyn now checks for that regularly, just in case, and reports that every once in a while, somebody gets lucky and improves a lot by taking thiamine. [00:04:47] Mike Brook: Do we know that, that this wasn't a placebo effect? [00:04:51] Jill Brook: No, there was no control group. [00:04:55] Mike Brook: Got it. Is this something that you've tried? I mean, I, I always ask you this, but you've tried a lot of things. Is thymine supplementing with thymine something that you've tried? [00:05:03] Jill Brook: I have tried it, but I had a mast cell reaction on the first... Day I took supplemental thiamin and as you know, it's so hard to figure out what the cause of your mast cell reaction was. I didn't know if it was because of the supplement or something else, but I didn't feel like risking another reaction so I just started eating foods higher in thiamin because that was my solution. [00:05:27] Mike Brook: Well, that, that, that, that sounds like, that sounds like POTS and MCAS in a nutshell right there. So what are foods that are high in thiamin. [00:05:37] Jill Brook: Meat is pretty high, especially pork and seafood, beans, lentils, whole grains, fortified foods, nuts, seeds. [00:05:47] Mike Brook: Okay, so big drum roll. Did it work for you? [00:05:51] Jill Brook: No, no, I don't think it did anything. [00:05:53] Mike Brook: Okay. Okay let's move on to the next one. What's the next nutrient study for POTS? Okay, Okay, [00:06:00] Jill Brook: so the next one is a 2013 study in the journal Clinical Autonomic Research by Jarjour and Jarjour, where they looked at 24 adolescent POTS patients, ages 12 to 18, and 17 of them were females, 7 were males, and they measured their blood iron levels. They categorized them into people with normal iron, Low iron and then truly deficient in iron or outright anemia. That's the most severe level. And then they just compared the prevalence of that in POTS patients to the known prevalence in the normal U. S. . Pediatric population. [00:06:45] Mike Brook: so 17 girls, 7 boys. So not a very big sample size, but this is, this is the world of POTS. We're not used to big sample sizes. And so if people don't get enough iron, a typical symptom is fatigue. Is that right? [00:07:01] Jill Brook: Yeah, you need iron for red blood cells, which deliver oxygen to tissues. So symptoms can start out very mild, but with more severe deficiency, you can get fatigue, weakness, dizziness, lightheadedness, cold hands and feet, shortness of breath, irregular heartbeat, all kinds of things that could look like POTS or make POTS symptoms worse. [00:07:27] Mike Brook: So that seems a little bit similar to that thiamin study. It's sort of things that seem to be POTS like, or at least sort of mimicking or POTS adjacent. And I guess that makes a lot of sense since a lot of POTS symptoms are from lack of circulation, the brain and body not getting good circulation. And of course, low iron could exacerbate that, I guess. [00:07:49] Jill Brook: Yeah. [00:07:50] Mike Brook: Okay, so, what did they find? [00:07:53] Jill Brook: So in these 24 POTS patients, they found low iron was common and a lot more common than in the background population matched for age and gender. [00:08:06] Mike Brook: Okay. Can you put some specifics on it? [00:08:09] Jill Brook: Sure, so let's start with the mildest form of low iron, which they called low iron storage. So it's not full out deficiency. But 50 percent of the POTS patients had it versus only 14 percent in the background rate. [00:08:25] Mike Brook: Okay. I mean, that's, that's kind of impressive actually. I mean, that's three times the prevalence. Okay. But that's just, that's just sort of like tier one deficiency. What about the actual like, you know, harder core iron deficiency? [00:08:40] Jill Brook: Yeah, so for actual iron deficiency among the girls, 25 percent of the POTS patients had it versus a 9 percent background rate. And for boys, 16 percent had it among the POTS patients versus only a 1 percent background rate. [00:08:59] Mike Brook: 16 percent to 1%. So that was for the boys. So that's, that's a pretty noteworthy difference there. I mean, this sounds a little bit promising. So the girls had, About 3x the prevalence of having Iron Deficiency, so the POTS group, the POTS girls had 3x the prevalence and the boys, granted there were only 7 of them, but they had 16x the prevalence of the background rate. And I think you said there's even a more severe level of iron deficiency, yeah? [00:09:34] Jill Brook: Yeah, so Outright Iron Deficiency Anemia, where you cannot make red blood cells properly because your iron is so low. Okay, so hold on for these numbers because this is going to be a big, big difference. In the females, 18 percent of POTS patients had it. Versus a background rate of 1. 5%. And then in the males, 43 percent of the POTS patients had it. Versus a background rate of 0.1% [00:10:05] Mike Brook: Aha! 43 percent to 0. 1%. So, I'm not very good at math, but I think you're looking at about 12x for the girls and 430x for the boys. So this sounds very impressive and like a very... Important finding? Is this, is this a breakthrough? [00:10:29] Jill Brook: 1%. I know, it sounds amazing, right? I looked for more studies following up on this and I was pretty disappointed not to find any. Now on the clinicaltrials. gov website, there was a study listed for a few years saying that the Mayo Clinic was in the process of trying to get a study together that would look at the effect of Iron Infusions in POTS patients and I kept checking back to see how it went and what were the results, but eventually the website just said that the study did not end up happening because of trouble recruiting patients. So I don't know what happened there, but I could not find any follow up. [00:11:10] Mike Brook: Well, that's pretty disappointing. As far as correcting an iron deficiency though, that's generally considered to be a healthy thing to do. Is that right? [00:11:18] Jill Brook: Yeah, I mean, POTS patients should talk to their doctors about getting tested because you don't want to supplement with iron without medical supervision because you can overdo it and too much iron is a bad thing. But working with your doctor to have an appropriate iron level seems very promising based on this study. [00:11:37] Mike Brook: Okay, so if a patient and and their doctor concluded it was a good thing to get their iron levels up, how would somebody do it? [00:11:45] Jill Brook: Supplements are one option or you can eat more foods rich in iron. [00:11:50] Mike Brook: Aha, okay. So, bringing your life back into this, Jill, because that's what we do here. I remember you eating emu meat. So we had, we had I don't know, probably like 50 pounds of emu meat. In the freezer, and you had it every morning, and it wasn't, it wasn't just emu meat, you always ate it with grapefruit. Grapefruit, which is something you never eat anymore, you don't eat either of these things, but for months, you were having emu and grapefruit every morning. what was going on [00:12:26] Jill Brook: Yes, that was not the tastiest period of my life, but I was trying to raise my iron and eating vitamin C from the grapefruit. can boost iron absorption. [00:12:38] Mike Brook: Okay, so, second drumroll, we're gonna ask you if it helped. Did it help? [00:12:44] Jill Brook: It did raise my blood iron levels, but it did not help me feel better. [00:12:50] Mike Brook: Well, that's too bad. What's the next one you wanted to share? [00:12:54] Jill Brook: The next one is from 2014, published in the journal Pediatrics by Oner et al. and the name of it is Postural Orthostatic Tachycardia Syndrome and Vitamin B12 Deficiency in Adolescents, but this study shows why you really need to read the fine print, i. e. the method section of a study, and not just take the conclusion from the abstract. [00:13:21] Mike Brook: Well, that sounds like solid advice. So why do you say that in this case? [00:13:26] Jill Brook: Well, according to the title and the abstract, this study compared levels of vitamin B12 in adolescents with POTS and without POTS. They report the POTS patients had lower levels and their conclusion suggested that this was a true potential cause of the POTS. They proposed a mechanism of action where, I'm quoting now, Vitamin B12 deficiency in patients with POTS may lead to Sympathetic Nervous System Baroreceptor Dysfunction, unquote. And we know that baroreceptors help manage vasoconstriction. [00:14:05] Mike Brook: Okay. So what's your, what is your critique of their hypothesis? [00:14:10] Jill Brook: Well, it's not just mine, it's also Dr. Raj's, but in the methodology section, they define POTS as fainting during a tilt table test. And that's not really the right definition of POTS. POTS is having your heart rate increase by at least 30 beats per minute upon going from supine to upright. 40 beats per minute if you're a kid. And there are a few other little things, like your blood pressure has to not drop, and you have to have symptoms for at least 3 to 6 months. And we know that most POTS patients don't faint and that many non POTSies do faint on a tilt table test, especially in adolescence. So the title of the study says POTSies have lower B12, but they actually found that fainters on a tilt table test have lower B12. [00:15:03] Mike Brook: Okay. So it's, it seems like not, not really the same thing. They weren't really measuring what they said they were measuring. But is it possible that it is helpful? Potentially to POTS, especially maybe those who are fainters. I mean, I think you used to faint pretty often. What are the symptoms of B12 deficiency? [00:15:23] Jill Brook: Yeah, yeah, good points. So, low B12 can have a lot of different possible symptoms, including fatigue, weakness, cognitive difficulties like memory loss, depression, irritability, neurological symptoms, numbness or tingling in the extremities, Intestinal problems. So again, you know, a lot of overlap with possible POTS symptoms. [00:15:51] Mike Brook: Huh. So, same question as before. Is this a common deficiency, B12? [00:15:56] Jill Brook: Yeah, it's more common for a few reasons. Vitamin B12 is only found in animal foods like meat, eggs, and dairy. So vegans need to supplement or else they're at high risk to be deficient. Then there's also some digestive issues or drugs that can inhibit absorption like lower stomach acid alcohol dependence, some things like that. [00:16:21] Mike Brook: So, is there a test to take? And then, if you were low, would you take supplements? [00:16:27] Jill Brook: Yes and yes. [00:16:30] Mike Brook: Let's, let's talk about your history again. So, didn't you spend years thinking you had... B vitamin deficiencies, kind of when you were getting started with POTS. I mean, I think you didn't even know it was POTS at the time, but , B vitamin deficiencies were a major hypothesis that you had. [00:16:49] Jill Brook: Yes. [00:16:52] Mike Brook: Okay and, okay, I'm trying, I'm thinking back. to our refrigerator, I seem to remember a jar of clams in there, I mean, really, not something you want to see when you open the refrigerator. And you were very determined to get your B vitamins up, this was a project here, and so I think you went for it, and did it work? [00:17:19] Jill Brook: Oh man, I know, I wasted years. I mean, my advice to patients based on this is get the tests. Don't assume anything. Because I had already gone to so many doctors who all said I was fine. And I already felt like, the doctors didn't believe anything I was saying. So I had decided to just work on my own to try to fix what I assumed were nutrient deficiencies. And that was not my problem, it turned out. [00:17:49] Mike Brook: And before we leave vitamin B12, I don't know that we really mentioned it with thiamine, but thiamine is vitamin B1, is that right? [00:17:57] Jill Brook: Oh, yes, yes. [00:17:58] Mike Brook: So I just wanted to clarify that. They're both B vitamins, but they're different ones, is that [00:18:03] Jill Brook: Yes, perfect. [00:18:06] Mike Brook: Well, should we move on to the fourth study? [00:18:08] Jill Brook: Yeah, perfect. So this was just an abstract published in 2015 in the journal Circulation by Ashangare and Suleman. They looked at 180 POTS patients to see how their blood levels of vitamin D looked. [00:18:26] Mike Brook: Okay, so what'd they find? [00:18:28] Jill Brook: They were low. Over 50 percent had vitamin D levels below 20 nanograms per milliliter, which is really, really low. Most experts these days are saying ideal vitamin D is at least 2 3 times that high. One other study found low vitamin D was associated with orthostatic intolerance and there was a case study of a single POTS patient who had a genetic defect that made her unable to convert vitamin D3 into the activated form that our cells use. And so she had some smart doctors who figured out. That she had that issue, and they prescribed her the activated form of vitamin D as a supplement. And when she took that, her severe POTS basically went away. She went from having a 90 beat per minute increase on a tilt table test to being able to go back to work. But you need testing and a prescription for that activated type of vitamin D. [00:19:32] Mike Brook: That's intriguing. Why would vitamin D be low in POTS patients? [00:19:37] Jill Brook: Well, we know that lower vitamin D is associated with lots of health issues, and it's thought to be related to inflammation and autoimmunity, but I have not seen anything related to POTS specifically, but it is widely considered smart. to get your vitamin D levels into the optimal range for general health no matter what your issues are. [00:20:01] Mike Brook: And how would you do that? [00:20:03] Jill Brook: Typically with supplements or safe amounts of sunshine. [00:20:07] Mike Brook: Okay, so I've seen recommendations, they're kind of all over the place on vitamin D. Some are really, really high. I mean, is it possible to overdo it? [00:20:17] Jill Brook: Yeah, yeah, so most people take somewhere between 600 IU and 2, 000 IU a day or if they're interested in taking more then they would generally talk to their doctors and get there's also an app called D Minder that helps you figure out how much vitamin D you're getting from the sun based on where you live and how much time you spend outdoors. You and I participate in a citizen science project at grassrootshealth. org where a bunch of vitamin D experts offer participation in a study where you sign up to get your vitamin D test by mail every six months so that you can see where you're at. And then you also agree to fill out their surveys. But with all of that said, yes, you can overdo the vitamin D. And what happens is your calcium levels in your blood get too high, which can have negative effects. So you want to be careful. You don't want to just go nuts without having it tested. [00:21:14] Mike Brook: Since we've talked about, you know, your own personal experiments with some of these things, let's talk about this one. Have you done a vitamin D experiment yourself? [00:21:23] Jill Brook: Yes. I have done vitamin D experiments with supplements, with actual sunshine. I talked with Dr. Eduardo Beltran, a vitamin D and autoimmunity expert in one of our episodes, and I followed his protocol for a while with very high levels of vitamin D, like taking 40, 000 IU per day. And I did feel good on that. And the only reason I did not continue with that is because it's not easy to get the blood tests needed. to keep doing that safely. As you know, it's not convenient for us to go to a lab core and get blood tested. So I currently have gone back to a lower level that you can do safely without any blood tests, but I do feel like keeping my vitamin D up helps me a lot. [00:22:12] Mike Brook: Got it. Okay. Are there any other nutritional deficiency findings for POTS? [00:22:20] Jill Brook: So, there's a single case study about choline that we covered in depth with Dr. Leila Schenkel in episode 82, but that was really just a single case study and not much to go on. [00:22:34] Mike Brook: So doesn't it seem possible that POTS patients would have more nutrient deficiencies than average because they have a lot of challenges around cooking and eating and digesting [00:22:45] Jill Brook: yeah, I think it could totally go both ways. Directions. Huh. [00:22:49] Mike Brook: Okay. So summing up, what do you think the upshot is on nutrition deficiencies with POTS? [00:22:56] Jill Brook: Well, obviously we wish we had more research and we don't know that much about it, but it's obviously not advised to have any nutrient deficiencies regardless of whether you have POTS or not. And so I think these four studies that we have could be some places to start looking. I'd encourage people to check out our website at standinguptopots.org/nutritionalimbalances, where I and Dr. Blitshteyn wrote a webpage about nutrient deficiencies. And then she lists exactly which lab tests that she runs on her POTS patients to look for deficiencies. She has several others besides the nutrients that we just talked about. Which do not have any POTS research behind them, but may also be helpful. [00:23:48] Mike Brook: Okay. So that's standinguptopots.org/nutritionalimbalances, and that'll be in the show notes. One more question for you. You are pretty into vitamin C right now, so we haven't talked about vitamin C yet. We talked about iron and a couple of Bs and a D. We haven't talked about C. Now, you're taking quite a bit of supplemental vitamin C. I don't know the exact numbers, but you also have a diet that is very high in vitamin C. I feel like there's no way that you're deficient in it, so can you reconcile that for me? [00:24:27] Jill Brook: Sure, I know, and it's confusing, right? But I have learned that extra vitamin C makes a huge difference for my nighttime itching, probably because it is known to be a mast cell stabilizer and also helps to break down histamine. Especially the liquid liposomal vitamin C is, for me, just as good as taking Benadryl, it's actually better because Benadryl gives me insomnia. [00:24:53] Mike Brook: Yeah, and it's also, I think, kind of encouraging that, you know, you've been, you have been hardcore into nutritional strategies for POTS and MCAS for a long time, and it's kind of encouraging that something can come along, like high dose vitamin C, that makes a huge difference for you, and it, and it has. I mean, you've been you've been kind of on cloud nine about this one, so, [00:25:17] Jill Brook: Well, you don't know what it's like to go a year itching every night and then to just have that magically go away from something that's so cheap and available and relatively safe. Yeah. But lest anybody Yeah, but unless anybody's about to go try it without talking to their doctor, it does theoretically raise your risk for kidney stones. It's not a completely 100 percent no brainer to do that. So you want to talk with your provider before you, before you go doing something like that. [00:25:46] Mike Brook: Okay, great advice. Well, thank you so much for all this today, Jill. [00:25:51] Jill Brook: Oh, my pleasure. Thank you for hosting. [00:25:54] Mike Brook: You're welcome. So hey listeners, that's all for today. We will be back again next week, and until then, thank you for listening. Remember, you're not alone, and please join us again very soon.

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