We Used IVF to End My Family Line of Kidney Disease

Science was never my strong suit in school, and that’s putting it mildly. I still don’t fully understand what the periodic table is. (No, this is not an invitation to explain it, thanks.) But that doesn’t deter me from respecting, appreciating, and wholly marveling at science and its infinite possibilities. The more I learn about the IVF process, for example, the more amazed I become. I went down rabbit holes of podcasts, books, and movies dedicated to the history and innovation of fertility treatments. The amount to learn is seemingly limitless.

The conclusion I inevitably come back to time and time again is the more we understand about our bodies—their physiology, their chemistry, their transformations—the better we can treat them. That could mean ruling out a hereditary disease for your kid through genetic testing, actually taking the time to study how hormones affect nearly everything we do, or merely finding a great scalp serum that slows down postpartum hair loss. I might not fully comprehend how it all works, but all hail the experts who do.

By Chelsea Brasted

It was around the time I stood on the sidewalk of a cracked and broken Uptown New Orleans street that I realized just how delusional I’d been about IVF. Sweat brought on by the late summer humidity mixed with tears as I hugged a receptionist whose name I don’t know and faced the reality I’d gone through an entire egg retrieval with nearly nothing to show for it.

Months earlier, I’d walked recklessly optimistic into the clinic behind me. In my early 30s, happily married and without either of us having any known fertility issues, my husband and I wondered how hard it could be to get pregnant. But then, there I was, sobbing with the realization that the only embryo that’d made it through fertilization undeniably shared my DNA, laced through as it was with the abnormalities that manifested in my polycystic kidney disease (PKD).

That disease, which is the world’s most commonly inherited kidney disorder, was the reason I was there. A slow-moving monster, it causes kidneys to be infiltrated by cysts, which over time stops them from performing their job of filtering waste from your blood. Eventually, people with PKD require dialysis and kidney transplants, and our kids have a 50/50 chance of inheriting it, too. 

That is, of course, unless you conceive with in vitro fertilization (IVF) and first opt to diagnose and disregard any embryos with markers of the disease. That process, called preimplantation genetic testing (PGT), ensures you don’t pass along the chaos hidden in your blood.

Things helping us combat dreaded postpartum hair loss

If I could describe postpartum hair loss as a movie, it would be Everything Everywhere All at Once. This, of course, refers to the amount of strands that have fallen out the instant I hit five months postpartum. It can be nerve-wracking to see the hair balls pile up on your bathroom floor and clog up your hairbrush, but there are some remedies that can help. We’ve consulted a panel of experts (aka our genius hairstylists) for recommendations on the best products and supplements to aid in regrowth and overall hair health. —Lauren Bell Martin

Meet endocrinologist Dr. Gillian Goddard, who wants us to pay more attention to our hormones

When Dr. Gillian Goddard noticed that her friends and family struggled to find a good source for information on hormonal health, she took matters into her own hands. As an endocrinologist and professor of medicine at NYU, she started The Savvy Patient newsletter, a weekly dispatch where she dives deep into health topics, breaks down journal articles, and provides an antidote to panicky headlines.

She just released her first book, The Hormone Loop, which chronicles challenges and solutions when it comes to four hormonal categories: reproductive, thyroid, growth, and adrenal. In it, she clears up common misconceptions about hormonal fluctuations from puberty through menopause and provides patients with necessary advice for how to self-advocate. We got the chance to ask her about hormones affecting fertility and perimenopause, what the hell is happening with our temperature regulation and bone density as we get older, and when we know it’s time to start seeing an endocrinologist. —Jess Mayhugh

Why do you think hormonal healthcare has traditionally taken such a backseat
Of all the different disciplines in medicine, hormones have been some of the later discoveries. Part of that is because of technology. You have to be able to test for these hormones to know that they’re there. Even in the 1950s, we were giving people extracts of different glands because we didn’t yet know how to make synthetic versions of these hormones.

Also, hormonal issues predominantly affect women. On the whole, things like thyroid disease affect women 5:1 compared to men. And so men were the doctors and they weren’t all that interested, and they spent a lot of time telling women what they were experiencing was normal and natural and, if it didn’t feel great, well, that was just their lot in life. As more women have entered medicine, we’ve been able to say that’s not the right answer. It wasn’t until 1993 that women were required to be included in clinical trials funded by the federal government. So, not that long ago. And the first thing that happened was the landmark Women’s Health Initiative study where we learned so much about menopause. It’s just really taken a long time.

The term “hormonal” is used as an insult against women, but hormones are a constant. What are they doing in our bodies that we don’t realize? 
The term “hormonal” has been weaponized for sure. Hormones, at least in part, are involved in almost every process in our body: how our hearts beat, how our guts process food, how our bones release calcium, and how our brain receptors function. This means hormones are affecting how we think and how our body processes our internal and external environments. In fact, the hypothalamus, which is where we start thinking about each hormone loop, really sits at the crossroads of the brain and is taking in all this information. So there’s really not a thing that goes on in our bodies where hormones are not at play. By the way, men are hormonal, too. Men have all the same hormones women do and women have all the same hormones men do—just in different concentrations. Women’s hormones fluctuate during the reproductive years on a monthly basis and testosterone fluctuates on a daily basis.

Even being an endocrinologist, were there things you learned in your research that surprised you?
Just how recent in history women’s health advancements have been, including that 1993 date. I remember years ago learning about the first woman who ran a marathon but I didn’t realize it was only the year before I was born and she was running in nurse’s shoes because we didn’t think women should exercise. And I always knew that my field was quite small compared to other fields of medicine, but I didn’t realize that there were so few endocrinologists. It explained a lot about my experience because there are so few of us out there that have this expertise. That was the biggest reason to write the book, because most women don’t have access to an endocrinologist and, those that do, often wait months and months to get in to see them. And so we need to be able to have these conversations with our other doctors and to ask good questions to steer them in the right direction.

You focus a lot on polycystic ovarian syndrome [now PMOS] and primary ovarian insufficiency [POI] in the reproductive loop section. How do you encourage women who receive these diagnoses?
My first answer is always that there are lots of ways to build a family. I have many women with PCOS who have had all different experiences getting pregnant. I have a patient with PCOS who got pregnant for the first time in her late 20s. She had two kids in quick succession, and then with the third, tried and tried, and ultimately adopted a child. And then when she was 41, she accidentally got pregnant with a fourth kid. I use that story often as a cautionary tale to my young patients to say that PCOS is not birth control. You very much can get pregnant.

The other thing is there are a lot of things that reproductive endocrinologists or fertility specialists can do to assist women in becoming pregnant, that are not IVF. Things like ovulation induction with timed intercourse and IUI are much less invasive. We have this idea in our head that assisted reproductive technology is IVF and nothing else, but that’s really not true. 

With POI, the big thing is getting it diagnosed early. Again and again, I tell women that if you are not on hormonal birth control, you should be having a period every single month. If you are not having a period, you have to go to your doctor and get treatment. I have a lovely patient with POI and she ignored her symptoms for 18 months. By the time she went to the doctor and they diagnosed her, it was too late to do egg freezing. Now she has a beautiful adopted son and they have a wonderful family. But I think it’s really important to encourage women to not put off our symptoms. The key with POI is early diagnosis, especially if you’re interested in fertility preservation, whether that’s egg or embryo freezing.

Can we talk about temperature for a second? The sweats and shivers in early postpartum were like nothing I had ever experienced, and I know that is just the beginning. How do you help women deal with this dysregulation? 
Postpartum is the most dramatic when it comes to temperature fluctuation. Your estrogen levels at the end of pregnancy are the highest they will ever be in your entire life, and they plummet to zero in the span of just a few weeks. The placenta is actually the organ that’s pouring out all that estrogen and progesterone during pregnancy. So once you deliver the placenta, it takes some time, especially if you’re breastfeeding, for that reproductive loop to kick back in. We don’t give hormone therapy to women in postpartum, in part because the timing of these symptoms is so limited and because estrogen affects breastmilk production. We want the hormone loop to kick back in ultimately so you can start to have regular periods again.

When you’re in perimenopause, it’s a really different situation. In most cases, we know that our reproductive years are coming to an end and hopefully most of us have had the opportunity to have the family that we want to have. But it’s at this point that symptoms can be intrusive and unpredictable, making it so critical and important to treat women at this stage. These symptoms can go on for years and years. The thing we know hormone therapy helps with are these vasomotor symptoms: hot flushes and night sweats. When you’re talking about a process that’s going to potentially go on for a long time, it’s very much worth treating symptoms, and the benefits of treatment often outweigh the risks. 

How has HRT, or hormone therapy, undergone a rebrand and why that’s important for women to understand?
HRT [hormone replacement therapy] got such a bad reputation during the immediate aftermath of the Women’s Health Initiative. We want to make this acceptable to women again because it can be so helpful. “Replacement” sounds like we are prescribing estrogen to get estrogen levels back to where they are during the reproductive years. And that’s really not how we give hormone therapy. The goal of hormone therapy is not to bring estrogen levels into a particular range, because estrogen levels fluctuate throughout our menstrual cycle. The goal is to treat symptoms. So if your symptoms are better, but not all the way better, we might try increasing the dose of your estrogen. If your symptoms are managed, but you’re having side effects, we might try reducing the dose. The therapy is to manage symptoms, it’s not to bring estrogen levels to a particular static goal.

Getting into the last hormone loop in the book, what the heck can be done about our breakdown of bone density as we get older? 
Make sure you’re getting adequate calcium. The recommendation for calcium in women under the age of 50 is 1,000 milligrams a day, the recommendation for calcium for women over 50 is 1,200 milligrams a day, and most women get something like 600 milligrams. So most of us need a little supplement, but not great gobs of it.

The other thing is weight-bearing exercise, in both our lower and upper body. Women are now finally getting the message that they should be doing strength training. And extreme weight loss affects bone density significantly. So I worry that the people who are really overdoing it with GLP-1s—using them in a situation they were not intended for—might be putting themselves at significant risk for osteoporosis. Another big generational difference is smoking, and thankfully our generation isn’t doing it to nearly the same degree. Smoking nicotine really affects bone density.

And, of course, a lot of osteoporosis is genetic. Many of us do have risk factors, whether that’s grandma had a hip fracture or whatever, so it’s good to take those into consideration. If you have a family history, the recommendation is to have a bone density test at menopause, right around age 50, as a baseline. Women who don’t have risk factors can wait until 65.

What are clear-cut signs you should see an endocrinologist? Or should we just all have one?
There are 9,000 endocrinologists and 168 million women, and men need endocrinologists, too. So in a perfect world, I would love it if all women could see an endocrinologist, but realistically, it’s not possible. However, you should push to see an endocrinologist when your OB-GYN or your PCP are out of their depth in managing questions about your hormonal health.

The good news is that there are a lot of gynecologists out there now who are seeking further education in hormone replacement therapy because they really don’t get educated on that very much as a part of their residency training. But I think if you’re like, “I have a family history of diabetes and my primary care doctor is not interested in or paying attention when I’m asking questions about doing particular tests to see what my risk is,” that’s a time to push for more expertise. If you ask specific questions and/or ask if they’ve read a particular study and they don’t get back to you, then it’s really worthwhile to request an expert opinion.

In talking to those doctors, why is it important to advocate for yourself and what tips and tricks do you include in the book?
Approach your doctor’s appointments like you do any other meeting. I won’t take a meeting without an agenda, so why would I go to my doctor without an agenda? If you don’t set the tone for your doctor’s visit, you doctor will. Doctors aren’t mind readers and, sometimes, we would like to be. We can’t know without you telling us what’s important to you. Think about how important this is compared to, you know, the June sales meeting. You prepare for every other meeting in your life; you should certainly do the same when it comes to your health.

“My toddler is currently in a throwing stage and, within five minutes of meeting our new babysitter, she clobbered her baby brother with a toy keyboard. Happy to report that our babysitter stayed and there were no serious head injuries thereafter.” —LBM