My Estrogen is Trying to Kill Me

Did you know you could be allergic to your own hormones?!

*What we are about to share is, by no means, meant to be taken as medical advice. It is a story of our own experience with a medical scare and, potentially, a nudge to others to pursue treatment, if needed.*

On Monday, October 10, 2022, I had my first “episode”. At 4AM I abruptly shot up in bed with tense feeling in my chest. I stood up to make my way to the bathroom but my legs shook underneath me, my thoughts raced, and then the nausea hit.

I stumbled to the toilet began to dry heave. “What is going on!?” I shouted in my head because codependency didn’t want to wake Renzo up. I sat on the cold floor, my hands were clammy, my mouth was dry, waves of hot/cold tingling coursed through my body, and my throat was tight.

“Maybe I’m pregnant?” I thought to myself, but reminded myself that we were cautious with our fertility and I was on day 1 of my period… so that was quickly ruled out. I decided to get back to bed and try to sleep it off. But 20 minutes later another wave came on and I had to run to my new porcelain best friend. “Wow! This is so weird.” This cycle continued for the next two hours before started to “come down” and feel better, but exhausted from the strange, short-lived illness. Renzo, who woke up despite my best efforts to suffer in silence, and I were convinced that this must be some sort of stomach bug.

I was so utterly exhausted that I could not get out of bed until lunch time. But after eating a bit and resting a ton, I felt normal and figured I have just gone through a really weird less than 24 hour bug.

4Am the next morning, the same thing. I startled awake out of a deep sleep , on full alert, wired, and racing to the bathroom around. Two hours later, as if nothing had happened, but wiped from the hours of…whatever that was. Maybe I wasn’t better yet, but that has got to be it right?

The next day, repeat. What is going on?!

How doctors treat women

After the third consecutive day of these strange “episodes”, Renzo insisted I go to a doctor. There, after describing the situation, the doctor looked at me kindly and said, “it sounds like you have anxiety”.

Well…yeah…it does. But that’s not what this is.

I had suffered from anxiety, I actually had attempted to use calming techniques I had learned in therapy to relieve the symptoms to no avail. And I emotionally and psychologically felt fine. I also felt perfectly normal after the “episode” ended about six hours after it began. I appreciated her educated assessment, but also knew that she was missing something.

No matter my insisting that it wasn’t anxiety, the doctor went through the “facts” with me. I had five young kids, a stay-at-home-mom, and life is stressful in this season. Anxiety is nothing to be ashamed of I was reassured.

Yes, she was right about all of those things but I wasn’t anxious about any of it at 4AM. The episodes woke me from sleep, so I wasn’t worried or concerned about anything to prompt what felt like the most intense panic attack I’ve ever had. I wasn’t stressed in life any more than usual. So I continued to advocate.

I asked her what else she could look for. She wrote up a slip for some basic lab work, gave me a referral to a psychiatrist. She appeased my request and said she’d check my iron, but dismissed me as hysterical.

I felt totally invalidated.

Four more morning “episodes” followed and I was devastated. We prayed for a miracle and on the eighth day, nothing. A week later, nothing. We prayed in thanksgiving and were ready to put the episodes behind us.

Then two weeks after the first “episode”, three more returned. I went back to the doctor convinced something was wrong, and it wasn’t my mental wellbeing.

She insisted I see a psychiatrist because my labs came back normal, and gave me a prescription for hydroxyzine, an antihistamine used off-label for panic attacks.

The next morning used the med in hopes of relieving the tidal wave of the “episode” as it began at 4 AM. To my shock, 15 minutes later it began to settle. I avoided the inevitable bathroom visit that always signaled the peak of the “episode” with dry heaving and the runs. Was the doctor right?

Everything pointed to panic attacks being the correct diagnosis, except for my gut.

High Cortisol and Cancer?

I continued to take hydroxyzine at night before bedtime and was able to curb the “episodes”. If one started to rear its ugly head, I took a second dose. But I couldn’t keep living like this without knowing what the cause was. Since primary physician was unwilling to consider anything else besides anxiety I decided to go a little out of my comfort zone and made an appointment with a naturopath.

I went in thinking she would be hippy dippy, tell me I don’t tolerate gluten, demand I switch to all organic all the things, and charge me an arm and a leg for supplements and essential oils that should calm me down.

*color me humbled*

She had the most thorough intake appointment I had ever had with any medical professional (barring my first appointment with my beloved NaPro doctor).

She took all of my concerns very seriously, asked about my lifestyle and diet and stress levels, took into account my age and experience with fertility, and given my normal gut regularity outside of these episodes bypassed the food sensitivity route. She asked me to take time off hydroxyzine to get lab work done during an episode to have the more clear results of what was going on in my body while I was experiencing its effects. She also checked my vitamin and mineral levels. Specifically, she was curious of what my AM Cortisol would be.

30 vials of blood later and all of my labs all came back normal except for very very elevated AM Cortisol. So that meant the next stop was an endocrinologist.

Well actually I had to go from the nautropath back to my primary, explain to her why I don’t think it’s anxiety while feeling justified because my bloodwork showed something else was up, and then she wrote me a referral to the endocrinologist.

I brought Renzo so that he could reaffirm for them that anxiety wasn’t a concern and that my symptoms should be taken seriously. She agreed to run some more creative bloodwork. Starting with more cortisol and other hormonal tests, things took a turn quickly as she started testing for different types of cancer that would raise cortisol.

*gut punch*

The next few weeks of tests and waiting for results was anxiety-inducing. Not helpful when trying to advocate anxiety not being the culprit. When several negative tests came back, I was given the: We can’t figure it out, but it’s probably not cancer, so you should be alright. Keep taking the hydroxyzine, since it helps.

*relieved, but not alright*

Disappointed with the brush off, but grateful to have ruled out some big scary diagnoses, I was determined to find the root cause.

Why I will forever advocate for NaPro doctors and the Inito monitor

During this 6 month ordeal I had scheduled an appointment with my NaPro physician, Dr. Nolte. Being nearly 2 years postpartum at this point, my cycles hadn’t regulated yet. Given my PCOS diagnosis, under her care, I returned to a metformin and progesterone regimen and we were following up to see how I was doing managing my PCOS.

As the appointment was wrapping up I mentioned to her what I had been going through with the others doctors. She suggested I consider using some new technology that had just come out to see if the “episodes” coincided with my cycle at all. Renzo and I had already considered that, but there was no rhyme or reason to the episodes, they didn’t get come at the end or beginning of my cycle. Some months they were at the end, others they were right in the middle and multiple times a week.

But…instead of arguing, I listened. She also introduced me to the Inito monitor. She mentioned that it was like the ClearBlue monitor that I was using for the Marquette Method of Natural Family Planning (NFP), but gave daily quantitative hormone results (You can actually see what your hormones are). She’d been following its development, was using it for herself personally, and felt that the technology was promising, especially for the use of fertility awareness and as a tool that can lead to more accurate testing and diagnoses in women’s health. She suggested that maybe the data from Inito could shed some light on what my hormones were doing during the episodes.

What came next blew my mind.

The data this monitor showed finally gave me peace. This wasn’t anxiety!

My body was trying to peak more than once a cycle, as evidenced by the repeated LH surges, before reaching true ovulation. As my cycle regulated a bit in length (from 45-70+ days in length to 30-35), the first thing that became obvious was that my estrogen fluctuations (usually with my period but not always) came a week-long partnering of “episodes”.

I brought this connection to my NaPro doctor. She was the first to tell me flat out that I was having uncontrolled panic attacks and related them to PMDD (Premenstrual Dysphoric Disorder), accounting them to the sudden drop in progesterone and estrogen that occurs at the end of a woman’s cycle.

The other thing that the Inito monitor highlighted was that with the varying LH rises came repeated rises and falls of estrogen. As the pattern emerged, so did consistency in what seemed like random “episodes” mid-cycle.

No longer was it questionable! These “episodes” were a reaction to drastic fluctuations in estrogen…impossible to detect prior to the Inito monitor!

Finally, something was moving in the direction of an answer to the “what?” was going on with my body!

The next question was “why?”

I Think I’m Allergic

Dr. Nolte didn’t know why this was my body’s response, but agreed to continue prescribing hydroxyzine for symptom management, since it worked. And since we were able to predict the “episodes”, I could use it prophylactically (use it before I *need* it to avoid symptoms). Here, I will admit, that I turned to Dr. Google to try to figure out why an antihistamine was so effective in treating panic attacks that were associated with estrogen changes.

A few reddit articles and Facebook forum responses led me to a study indicating that there is a potential connection to an allergic reaction to high estrogen manifesting as a mast cell response imaging anxiety. THAT’S ME!!!

Not enough research has been done, yet, to have a clear answer as to why and how all of these pieces are related, but there is strong anecdotal support of women finding relief of PMDD symptoms with the use of antihistamines during their luteal phase and early during their period.

I brought these findings to Dr. Nolte, and she has since been doing her own little case studies with patients similar to me with positive results. And my naturopath concurred, its new information that is aligning with my experience. Until more is available, they’re both in agreement: antihistamines are a safe way to help me to avoid suffering each month.

What does this mean for women?

Obviously, my story is unique to me, but both can be effect tools for any woman hoping to understand her body: her hormone health and fertility coupled with the symptoms her body is experiencing as a result.

I have both my up-to-date and thoughtful NaPro physician and the Inito monitor to thank for my awareness of my body and what it’s doing.

I’ve heard from countless women who go to the doctor because of a number of issues only to be told they have anxiety. Women’s health has come a long way in the last few years, but it can keep getting better and NaPro doctors and tools like the Inito are taking womens health seriously. Women aren’t “smaller men” and their health shouldn’t be treated like that are just like men.

NaPro doctors go beyond the one-dimensional approach to treating women with irregular cycles, cyclic pain and illness, and fertility issues. The Inito monitor, measuring hormones quantitatively each day, demonstrates patterns or lack thereof, arming both the woman and the physician with a direction of where to begin to search for problems and solutions within the patient’s unique cycle.

Even regularly cycling women can benefit from the inside information into their bodies to optimize their health through diet, exercise, or stress management.

They are each a tremendous gift to women, and together, are a life-changing team.

We’d highly recommend considering exploring one or both!

use code MON15 when you order for a discount

Where medicine and nature meet

While I wish that my story could be wrapped up in a nice, neat bow that offered hope for relief, it doesn’t.

I still experience irregular cycles due to PCOS, though much more infrequently and with less variation. And I still suffer from cyclic PMDD, but with ways to curb the side effects.

While natural remedies have offered some positive change, I would love to have been able to find complete healing in more natural ways through diet and lifestyle changes, but still rely heavily on medication for relief.

But the biggest lesson I learned is that medicine and natural remedies are not mutually exclusive!

I am grateful, though, to have had the support of my husband in searching for clearer answers instead of settling for the first explanation. He reassured me that I could “trust my gut” and pursue both the expertise of doctors as well as my own inclinations. The two can cooperate with one another. I can’t be so stubborn to ignore the data of lab results, but I can also be confident that I do know my body.

I learned to be my own best advocate in the process.

So why do I share all of this with you? Well, for starters, we left little hints on our podcast as we went through months of exploration without ever sharing the conclusion. But more so to offer encouragement to those who feel like something is off and you’re not sure why…go find out! We are not medical experts, but we are experts of our experience. And this experience taught us to advocate, to explore, to monitor closely for clues, and to pursue wellness both naturally and medically.

Science has come a long way in helping people live fuller lives. And people are capable of healthy living by choosing to eat well and strengthen their bodies. Both/and!

Our hope in sharing this story is to nudge someone towards wellness, to give them the confidence to pursue healing, and to offer solidarity to those in the thick of the unknown.

Fiat.

-Monica