The Rise of Misinformation about Menopause Hormone Therapy on Instagram
The call is coming from inside the house
Sometimes, I write something on social media, and I think, yep, this will be controversial, and almost always, my Spidey Sense is correct. To be clear, the outpouring of vitriol never stops me, but having an idea in advance that a shitstorm is on the way is helpful, so I can plan these posts when I have the emotional bandwidth and time to manage the comments section and the inevitable ad hominem attacks. But every now and then, I write something, and the attacks come right out of left field. And with that little amuse-bouche, let’s begin.
Menopause is truly having a moment, and this is amazing. I’ve been working hard to bring information about menopause to the public for many years now. The more people discussing menopause in a fact-based way, the better! But I know from experience when gaps in medicine are identified, an industry quickly sprouts to capitalize on those gaps. Predictably, as the legitimate discussion on menopause has grown, there has been a parallel flood of scammy supplements from celebrities and doctors alike, false claims about so-called bioidentical hormones, unstudied meno-diets, and the promotion of useless tests and unproven hormone coaching services. As fantastical claims outperform facts on social media, their success didn’t surprise me.
But recently, it seems there has been a growing trend of misinformation about traditional pharmaceutical menopause hormone therapy (MHT) and testosterone. Over the past month or so, I’ve received an uptick in DMs questioning content about MHT and testosterone that people have seen from doctors, nurse practitioners, health coaches, and journalists on Instagram. Posts that positioned MHT as the elixir of youth, essential for heart and brain health, as well claims that testosterone replacement was vital for every woman. The sales job was fear-heavy, and social media algorithms love fear, hence their reach. In addition, there was often a side order of conspiracy theory with an insinuation that menopause societies are not up to date and that there is other information “they” (there is always an infamous “they” and who the fuck are “they” anyway) are keeping from you. Why these professional societies would keep valuable information from the public is never explained. It’s just, you know…reasons. Conspiracy theories are never too concerned with specifics.
And then, a couple of weeks ago, I received three texts and an email, all from different doctors, asking me what was up with the disinformation about MHT on social media. I was told that women were coming into the office with serious misinformation about hormones, believing that every single woman must be on MHT and testosterone. They were telling their doctors they had heard online that MHT is proven to prevent dementia and heart disease and gives longevity and that doctors are gatekeeping testosterone for brain and muscle health. These colleagues contacted me because I am online often, and they thought I might have some insights.
I did next what any reasonable, evidence-based, terminally online doctor might do. I shared some good content—a podcast from Feisty Menopause featuring Professor Susan Davis, a world-renowned menopause researcher and clinician. The episode was geared around answering the question, Should every woman be on menopause hormone therapy? I thought it was an appropriate episode with someone who is a leading researcher in MHT and who I respect immensely, and it was very accessible to a non-medically trained audience. (You can find the episode here, and really, if you have any interest in menopause, it’s worth a listen).
I shared the podcast on Instagram with what I felt was an innocuous post:
I am hearing from so many women that they have been told by various social media menopause influencers that everyone must be on menopause hormone therapy or they will die early. There are so many valid reasons to take hormone therapy, that cherry picking data to promote it where the data doesn’t actually support it makes no sense. Unless the goal is to create fear as fear-based content feeds the algorithm.
I listened to this fantastic podcast episode from @feistymenopause, where Selene Yeager interviews Professor Susan Davis, and it is well worth the listen. She breaks down the data in an easy to understand format. The conclusions all line up with what I have been saying here, in TheVajenda.com, and in my book. MHT is great for hot flashes and night sweats and some other symptoms of menopause. Many women may benefit for bone health, but not everyone necessarily needs it for this reason. The data does not support using MHT for protecting the heart or prevention of dementia or longevity. Professor Davis says what I always say, if the data clearly supported MHT for these reasons, this would be reflected in the guidelines.
I hit send and thought nothing of it. Not controversial, right?
Wrong.
I was rapidly accused of fear-mongering, gaslighting, confusing women, and villainizing “natural” hormones. And yes, some doctors and nurse practitioners were among the enraged. I had to restrict a few people for willfully misinterpreting what I wrote and for insulting me.
Apparently, “no one” has been saying that all women should take hormone therapy. But why get angry if no one has ever made these claims? Unless, of course, my post hit a little too close to home. And how does my promoting guidelines from menopause societies contribute to fear and confusion?
There was also a classic straw man (straw women?) argument that clearly, I wanted to take menopause hormone therapy away from women. To which I heaved a heavy sigh Did some people not read the post? Did my detractors not know how to construct a coherent argument? Were some of them there just for a pile-on? Or all of the above.
Like what looking glass had I stepped through?
Of course, many women also commented that they had absolutely heard the fear-based message that MHT was essential for heart health, brain health, and longevity and that every woman should have testosterone. One even pointed out that they had even seen that fear-based message from some of the people attacking me in the comments.
Now I was curious. How prevalent was this disinformation on social media? So, I decided to run a poll, which I fully admit is 100% exploratory and not scientific. I asked the following question,
“I am curious, have you heard this message about hormone therapy on social media? That everyone should take it to prevent dementia and heart disease and for longevity?”
In 24 hours, over 22,000 accounts saw the question, and over 4,400 answered, most of whom are my Instagram followers. Of those who replied, 46% reported having seen the message that everyone should take MHT to prevent dementia, heart disease, and longevity.
Just to be clear, this survey doesn’t represent every woman, those on social media, or even those on Instagram, and of course, it’s not scientific. However, it counters the point made by those who stated that “no one” is saying all women should be on MHT. The fact that almost half of the people responded that they had seen this kind of misinformation suggests it is out there. So when someone comes into my comments and claims that no one is posting this kind of misinformation and also accuses me of gaslighting, I mean, who is really gaslighting whom?
Look, I’ve seen tons of screenshots via DMs about the MHT content women see and then question. When I speak at events, women often ask questions about MHT and testosterone being essential for the brain and heart and often say where they got that information. So I knew it was out there. And, in the midst of all this melee, someone shared this screenshot with an infographic from a group that calls themselves the Menoposse.
Listing these specific perceived risks is a choice, and not an evidence-based one. How does prescribing MHT, which is a pharmaceutical hormone, result in reduced profit for pharmaceutical companies? And listing “women taking control” both as a benefit and as a risk smacks of performative feminism.
Taking control is actually about making informed choices, and promoting some proven benefits of MHT along with some unsupported and bizarre claims about MHT while ignoring the actual risks (albeit rare) is not a step towards helping women make an informed choice. And how is an “Increase in female leaders” a benefit of MHT? Does that mean someone who can’t take MHT or doesn’t feel the need to take it is less likely to be a leader? Is my ability to lead really tied to pharmaceutical estrogen? This is bordering on the claim in the disproven book from the 1960s, Feminine Forever, that women lose their currency with menopause.
Of course MHT improves the quality of life for those who need it and of course those at risk for osteoporosis should take it if it is safe for them and it’s their choice, but we do not have good data to tell us that MHT reduces the risk of dementia or cardiovascular disease to prescribe it for those reasons. It’s also important to be factual and point out that only Premarin (when taken without a progestogen) has been shown in clinical trials to reduce the risk of breast cancer; not all estrogens. And that estrogen plus a progestogen, the most common regimen, is associated with an increased risk of breast cancer (about 1/1,000 women per year).
I can see how women might see content like this and conclude that every woman should be on MHT for health, especially if they see it repeated on many accounts including those from MDs.
When I first started providing evidence-based information about menopause years ago, I was battling the disinformation in the doctor's office and from the press, the false idea that MHT was harmful and women should never take it. The pendulum is now swinging in the opposite direction, and now I, and many other providers, are battling an opposite force of disinformation, with menopause being promoted as a disease, cherry-picking research articles to over promote MHT as a cure-all, and creating fear of missing out about testosterone. So yes, women are confused, but it’s not from me promoting the guidelines or posting a podcast with an interview from a world expert.
Scaring women and then promising them a magic wand seems to be an algorithm-friendly message. The motive for doing this may vary from person to person. For example, some may not understand how their social media message is being interpreted. Some may be looking to build a following that can be converted into supplement sales, selling an inadequately tested compounded estrogen face cream, promoting a medical practice, or selling a coaching service. Who knows? There are enough valid reasons to promote MHT, so I just don’t get this fear-based messaging to push it in situations when the current data that we have says that it isn’t necessary or proven.
I’ve been promoting evidence-based information for women online since 2010, when I started my first blog. I’m used to forced birthers, anti-vaxxers, jade egg enthusiasts, celebrities, and supplement shills getting angry at me. Many of them have come and gone, but I’m still here 🙂.
All I know is that I must have struck a nerve, since I received more vitriol for promoting a podcast about MHT from a world expert than I get posting about abortion. I think that says a lot. But I’m going to keep promoting the evidence because women deserve facts.
And look, those who deviate from the guidelines should be able to back their claims up with solid evidence; they must have that, right?
Then again, if that solid evidence existed, it would be in the guidelines. And if a revolutionary new study came out before the next set of guidelines, medical societies would make a statement, so we would all be aware of the importance.
Thank you so much for continuing to work through this! As someone who began practice in the mid-90 Prem-Pro days through the 2002 WHI publication, I am blown away by this current pendulum swing! I have been a certified menopause provider since 2019 and I have not seen anything like what is happening now. To call it FOMO would be an understatement! I have 40 yr old women on my schedule who want to discuss perimenopause symptoms like fatigue after lunch. They are quite certain that Testosterone would be helpful as they are clearly starting perimenopause. If I don't understand this then I am an un-informed clinician! Your article on dementia was perfect since that is a hot button topic now with research from Lisa Mosconi at Weill Cornell.
Thank you -thank you - thank you!
Endocrinologist here. Thank you for articulating what I have been feeling for so long. I just don’t have the energy to write back most of the time on the misinformation and gross generalisations from the ‘new experts’. Academics need to get put more, I say - I was so pleased to hear Prof Davis the this podcast. It’s complicated 😂🤓