You need to ask these questions to teens starting hormone therapy [PODCAST]

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“A good history and physical, including screening, can prevent consequences that burden a patient’s daily life and increase health care costs. Assessing cardiovascular risk is a key part of the evaluation. Transgender individuals may have a compounded risk. Awareness and education for both the patient and the provider are vital. Currently and in the future, given the gender fluidity of society, we need to be aware and not make assumptions about a patient’s gender. Finally, we cannot discount informed consent. The young individual involved in hormonal treatment must understand not just the benefits but also the risks.”

Maria Mba Wright is a pediatrician. Carol Reavis is a nurse.

They share their stories and discuss their KevinMD article, “You need to ask these questions to teens starting hormone therapy.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Rate and review at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. Today on the show, we have Maria Mba Wright and Carol Reavis. Maria is a pediatrician. Carol is a pediatric nurse, and together they co-wrote the KevinMD article “You need to ask these questions to teens starting hormone therapy.” Maria and Carol, welcome to the show.

Maria Mba Wright: Thank you so much for having us.

Kevin Pho: So each of you, just briefly share your story and journey to where you are today. Maria, why don’t you go first?

Maria Mba Wright: Yeah. So I’ve been a pediatrician now for 20 years, and in my current practice, one of the questions that we ask our patients during our physical exams is whether they have a family history of an early heart attack or stroke, specifically for men under 55 and women under 65. If the answer is yes, we do some screening tests, and one of the labs that we’re looking into is an elevated lipoprotein(a). Lipoprotein(a) at elevated levels is a genetic condition that is associated with early heart attacks and strokes.

Over the years of doing this screening, I noticed that there were elevated levels in patients of South Asian descent, African Americans, and Hispanics, and so I started becoming curious as to why this was happening. I contacted our genetics department to see what type of counseling we are giving these families. One key thing is that if the patient is ever put on estrogen or estrogen-containing medication, they need to be on an aspirin supplement to avoid a risk of stroke.

So then I would counsel my teens about this, and one of my teens actually took this to heart. After she transitioned to adult medicine, she had gone to see a gynecologist because she was having breakthrough bleeding, and she was offered birth control pills, which is a standard treatment. Apparently she yelled at her provider, so the provider went ahead and contacted me to say, “Why is this teen yelling at me?”

Kevin Pho: And so what was she saying when she was yelling at the provider? What was she yelling about?

Maria Mba Wright: They told me it was something about, “This is harmful. Why are you giving me something like this when my doctor told me that this could cause harm?” Something along those lines. When I proceeded to explain to the gynecologist why this would be, I realized she was not aware of lipoprotein(a) and what the implications were. And so then I realized that just giving it, for example, to this patient without aspirin could put the patient in harm’s way. This is where I realized we need more awareness, and that led me to write a first article, and the article we’re going to discuss today is a derivative of this initial article. So this is where I’m coming from.

Kevin Pho: Sure, and we’ll get into that article a little bit. But Carol, why don’t you just quickly introduce yourself?

Carol Reavis: Hi, I’m Carol Reavis. I’ve been a pediatric RN for 26 years, and I’ve worked the last 17 years with Dr. Wright in the clinic, coming from extensive acute care pediatric experience. I got involved in this article because it was rare for us to hear about a 16-year-old having a stroke.

Kevin Pho: And tell me that story about that 16-year-old having a stroke.

Carol Reavis: Well, we found out about it kind of in a roundabout way. Dr. Wright had come to me saying that she had heard from genetics, if I’m correct, about the 16-year-old Caucasian male who had a history of migraines for eight to nine years and then had a stroke. I was in intensive care in Northern California, and I was just amazed, because this is something we don’t see or hear about. And then that led to the reasons why Dr. Wright found out about the elevated lipoprotein(a), the history of migraines, and the factor V Leiden. That got me started thinking about my own husband’s untimely death at an early age due to a heart attack, and his father dying very much the same way. And then it was like, “Would this have been a factor?” That’s how we started on all this.

Kevin Pho: All right. So your article that both of you wrote is titled “You need to ask these questions to teens starting hormone therapy.” So Maria, tell me the issues and the events that led up to you and Carol writing this article.

Maria Mba Wright: So again, the catalyst for me was the workup that found that he had a lipoprotein(a) level of 249, normal being under 40, and he is a carrier of factor V Leiden. The other thing that was found is that his father had actually passed away a year or two before, at an early age, of a widowmaker heart attack, and the grandparent had also passed away in an untimely fashion, at an early age, of a heart attack.

And so then my question was, what if this particular teen decided to change genders? Because this is something that is real today. What would be the case here? I’m thinking this is a kid that we need to think about. So then I started asking how we are screening kids that are on hormone therapy, especially transgender kids, and I realized from discussing with the specialists in my group that everyone was doing something different. So then I thought, “Well, you know, it may be a good idea to standardize what we’re doing,” so that we make sure that we’re not unintentionally putting patients in harm’s way. We need to pause first: Do they have a condition that makes us think maybe estrogen may not be the best therapy for them? Maybe we need to do something else.

Kevin Pho: As part of your screening questions before you start someone on hormone therapy, you mentioned lipoprotein(a) as one of them. What other questions do you ask in the exam room?

Maria Mba Wright: Yeah, so we ask if they’ve had a personal history of lupus. We look at hypertension and migraine with aura, and whether there’s a family or personal history of thrombophilia. All these conditions actually would make us pause and say, “Well, maybe we need to consider a different therapy instead of what we are about to give,” such as birth control pills.

Kevin Pho: And Carol, tell us about some of the other cases that you and Maria have seen that have associated hormone therapy with blood clots and other hypercoagulable conditions.

Carol Reavis: Well, as I had mentioned earlier, in our clinic we do birth control counseling almost on a daily basis. We see teens frequently. I would have to say that we didn’t experience anything directly in our clinic as of yet, but we heard a lot of celebrity news about strokes in young adults, and so that was kind of like, “Boy, this is now starting to come out.” We started our brainstorming in January and February of this year, and all of this news started to come out over a period of time as we were refining and rewriting and getting everything up to speed.

Kevin Pho: So tell us about one of the celebrities. I think you had mentioned one in the article.

Carol Reavis: Yes. Well, the first one was Hailey Bieber, and what we had read was that she had not been screened by a medical doctor, and I don’t know how she obtained her birth control. It was also discovered she had a PFO.

Kevin Pho: So what exactly happened to Hailey Bieber?

Carol Reavis: She had a stroke, and she was a lucky one as far as sequelae go. But, you know, this is what we’re trying to decrease the risk of by getting the information out.

Maria Mba Wright: I wanted to add two things to that, actually. One, just to add more information: It turned out, when they did the workup to look at what happened, from what doctors had told Hailey, that she had the birth control pills that were given, but she also had COVID, the PFO, and had been traveling from, it looks like, France, from Paris to Los Angeles. So all of these factors contributed to having this stroke, and, you know, this is not something uncommon. Celebrities travel a lot, but then there’s COVID, and even a PFO.

And actually, just to add to that, I have a parent in her late 30s who came in. I’ve known them, and her kids are now 15, and she had a stroke. I asked her what caused this, and they had told her, “Oh, it was a PFO.” And now she’s older, and she’s dealing with just living with a stroke, and it’s almost tragic. It’s not really a pleasant experience.

Kevin Pho: And Maria, before starting someone on hormone therapy, do you do a panel of blood work? Is this all gathered through history and family history? How do you screen?

Maria Mba Wright: So first the history, but then also the vitals. We check blood pressure, we check to make sure they’re not pregnant, and the weight and height. So it’s mostly history and vitals, and then the urine screen.

Kevin Pho: And then what kind of specific questions about the history, or answers to your questions, would raise red flags in your mind?

Maria Mba Wright: So a family history of an early heart attack or stroke. If they have headaches: Sometimes they don’t even know what a migraine with aura is, but if they’ve had headaches, that’s something that makes me think twice about what we’re doing. Any family history of clotting or personal history of clotting. Medications also matter. And so those are some of the basic questions that we do ask.

Kevin Pho: And Carol, in the article you wrote that there were special challenges regarding the transgender patient. So tell us about some of those special situations.

Carol Reavis: We have five to six transgender youth in our clinic, and they’re on testosterone for transitioning from female to male, but they’re also on perhaps Depo-Provera or combined hormonal contraception, so their risks are increased. So that’s what we deal with. We give them their testosterone as prescribed, and we check a blood pressure. I do, anyway. I check blood pressure on occasion to see how that’s trending, and it’s always stable, thank goodness. But that’s about it for now.

Kevin Pho: All right. And then Maria, in terms of these additional risks, do we have any data or numbers on the additional risk because of the additional hormones that transgender patients generally are on?

Maria Mba Wright: I don’t think so. From my research, we don’t have numbers, but I think this is where I want to start in terms of looking at a trend when it comes to transgender patients. At least in the practice that I have, the treatment is fairly new. It’s been a few years since we started this process, and I’m hoping that there are going to be studies that show what the numbers are. But again, when it comes to the awareness, and even having articles that talk about side effects or what could happen if you’re on hormone therapy for a long period of time, the data isn’t out there as much yet. But I’m hoping that I’m contributing to starting that trend.

Kevin Pho: So you mentioned that there was a little bit of variability when it comes to screening among pediatricians in your practice, and I’m sure among pediatricians nationwide. What are the guidelines, or are there any guidelines, when it comes to screening patients for lipoprotein(a) and other risk factors before starting hormone therapy?

Maria Mba Wright: So we actually ask that question about the family history. I don’t think that there are specific guidelines. We know to ask some questions, we know to check for the pregnancy test, and we know to check blood pressure. But that is one of the things, and also the point of this article: There isn’t a standardized form of screening patients before we start anything. Everyone’s doing something different. We all know some of the basics, but we are not asking all the questions. And I think this is where, hopefully, even with this podcast, we can create awareness: Let’s start talking and get everyone, whether it’s the MD, the nurse practitioner, or all the providers in different specialties, pediatrics, gynecology, and family practice, to all be asking the same, or at least the main, questions.

Kevin Pho: We’re talking with Maria Mba Wright and Carol Reavis. Maria is a pediatrician. Carol is a pediatric nurse, and together they co-wrote the KevinMD article “You need to ask these questions to teens starting hormone therapy.” Now I’m going to ask each of you for your take-home messages to the KevinMD audience. Carol, why don’t you go first?

Carol Reavis: I would say that we all know how draining the sequelae are from a heart attack or stroke in the medical community. The general population doesn’t think about that on a daily basis like we know and do. So if we can decrease the odds of those risks and inform our patients to be more aware of their genes, that genes are more than looks and blood type, that’s the message we want to get out. And perhaps we’ll be the ones to set the guidelines, or at least draw attention to needed guidelines.

Kevin Pho: And Maria, your take-home messages to the KevinMD audience?

Maria Mba Wright: Yes. So first of all, for providers, this is a call to action: When we’re starting hormone therapy, ask questions as to whether the patient has had a family history of early heart attack or stroke, or a personal or family history of thrombophilia, of lupus, or of headaches, migraines with aura, so that we can pause before starting a medication. And then also rescreen with every refill, the annual refills, because our histories change. And then finally, make sure that the patient understands that if their personal history or family history changes, they should reach out to the doctor, because that might dictate a change in therapy.

And then for the audience: Knowing your personal history and family history is important, and it can determine your treatment plan. And then also make sure you understand. Do your research and ask questions, so that if you’re going to be on a medication for a long period of time, you understand what the long-term risks and benefits are. And finally, for the audience, get regular checkups, because with that, if your status changes, if you get hypertension, for example, then you know to contact your provider: “I was placed on birth control three years ago. Now I have hypertension. Do I need to change my therapy plan?” And hopefully, as a team, we can avoid bad outcomes, or at least help avoid bad outcomes.

Kevin Pho: Well, thank you to you both for sharing your time and insight, and thanks again for being on the show.

Carol Reavis: Thank you so much for having us.

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