PMDD… Menopause… Multiple personalities disorder… The diagnoses kept on coming and none were right

Sitting in my car in the underground parking garage at work, I’m bent out the door, feeling waves of pain, pressure and palpitations. The walls are closing in. I’m cold and shaking to the core. I just want to lay down, pull the covers over my head and never get up again.

That feeling started happening all the time. Then, layer in my declining mental faculties and the fun kept coming. I found myself unable to follow the GPS instructions in the car and driving around in circles. My brain was 1 minute behind every instruction. I couldn’t read anymore — I’d end up reading the same paragraph over and over. I couldn’t think long term or strategically and I couldn’t make decisions. And when your job is as a strategist and Chief of Staff, that’s a problem.

I started with my primary care. Unfortunately, when you say Microsoft, parent and woman, they go straight to “I’ll run some blood, but you are overworked, burned out and need a vacation. Here’s some valium.” Trying to explain that this was more than that, didn’t work. But I tried. I took a vacation but the symptoms didn’t change.

Next stop was my Ob/Gyn. But by this time, the mood swings and depression had gotten worse. The answer, she gave was Menopausal Panic Disorder and possibly PMDD. It was obviously all hormones. I was prescribed birth control. No testing, no follow-up.

Within two weeks, I was suicidal. My physical symptoms had trapped me in bed and I was living on Valium 24/7. I was getting massive adrenaline rushes. I could feel the chemicals soaring through my body and overwhelming my system. I don’t remember last Christmas at all. This was the first year I didn’t cook. My husband took over present duty and many of the traditions. I was in and out of consciousness all day. I hadn’t had any appetite for a few months and was starting to lose weight fast. Luckily I had quite a lot to spare. But that also meant no one paid attention to that as a symptom.

By New Years, we needed to do something and the doctors only suggestion was a partial psychiatric hospitalization. No one was focusing on my physical symptoms. No one suggested a specialist, no one took further tests. I was now a neurotic 45 year old woman that needed to be housed somewhere for safety.

I spent two months at a facility- surrounded by people whose symptoms were different from mine, confusing the staff with my mood volatility. One minute I was suicidal and then a hour later I could be stable and happy. I had moments of lucidity and moments of utter despair. They tried a bunch of antidepressants and meds but nothing really worked. They also discovered that many of the meds were making me worse including the birth control.

During that time, I fought to see specialists. I had to apply and get permission to leave the facility. I had to find my own doctors, make appointments and beg to be let out. On the positive side, I was lucky that I had the insurance type that allowed me to see specialists without referrals, otherwise it never would have happened.

First up was the Cardiac Specialist and a work up — something that you would have thought would be the first stop for someone experiencing chest pain and pressure. I got the all clear but the doctor let me know that most women’s heart issues go undiagnosed because they are repeatedly told they are panic attacks. He was horrified I wasn’t sent to him four months earlier.

Next stop, the endocrinologist for an adrenals and thyroid check. The thyroid controls the homeostasis of the body — temperature, metabolism, digestive function, brain function. If it doesn’t work everything stops working. They are finding that many psychiatric conditions are either exacerbated or caused by thyroid. Thyroid conditions are massively underdiagnosed — especially in women. My levels were reasonable (unfortunately I didn’t have any baseline thyroid numbers for the previous six months to compare them to). The doc did find a nodule on my thyroid that was growing and suggested we keep an eye on it. The general report was try another specialty, you are good here.

Next stop was neurology. I was working my way through the body systems ruling out things one by one — completely on my own. I didn’t make it to the neurologist as all of a sudden we were on Covid lockdown. Covid also stopped my time at the facility because 12 people together in a small room for 12 hours a day isn’t the best. Luckily towards the end of my time at the facility, they had realized that I needed to see someone and that they weren’t able to help. They recommended a functional health collective that had an immunologist, naturopath and psychiatrist who all worked together on patients.

These people were a godsend and were the first people in six months to give me a direction. After a whole host of tests, they discovered I was riddled with gut infections. I’d be on several rounds of increasing stronger antibiotics plus gotten food poisoning on a trip to Las Vegas, the fall I got sick. The theory was that the antibiotics had wiped out my gut flora and opportunistic bacteria had taken over. The unusual situation was that I had no gastro symptoms, the bacteria was attacking other parts of my body. Your gut is like your second brain, it makes all your neurotransmitters, it directs enormous parts of your system.

This then started a 3 month regimen during Spring lockdown of supplements and prescriptions to kill the norovirus, pseudamonas, staph, strep, ecoli that were present in my gut at 20 times the levels they should have been. This was all while I was now on 24/7 parent and teacher duty dealing with the stress of the pandemic. So you can imagine that my recovery was slow.

By the beginning of summer, some things had started to feel better and somethings worse. I still struggled to find stability — I had good days and bad. Some days it felt like chemicals were being turned on and off in my system. It felt like I was being poisoned from the inside out and then it was gone. I had lost 50 pounds. I couldn’t lift things, my joints ached, my muscles were weak. It was almost worse than earlier, because being sick every day just becomes the new normal. You get used to the limited abilities of your body. But when some days, your brain switches back on and the next day its gone, you live in grief and loss.

Mid summer, I got a new wrench in the works that turned out to be a blessing in disguise. My family got in a boating accident which sent me to the ER. During a CT, they discovered that my trachea was deviated way out of line. The small thyroid module had grown exponentially and was pushing things out of the way. They also discovered random bone loss in parts of my body.

This led down another rabbit hole of specialists. But at the same time, my mood volatility was getting worse, my suicidal ideations were getting more frequent and extreme. My psychiatrist at one point thought I had multiple personality syndrome because in a one hour session I could shift so quickly from suicidal to feeling fine. She had never seen anything like it. With all my ongoing psychological diagnoses, I started to worry that I had some sort of hypochondria and was making things up. I started to worry that things weren’t real. My psychiatrist referred me at one point for Ketamine, but the consensus was that I wasn’t a fit, that this wasn’t traditional depression and something medical was causing it. This was a big relief to me. It validated that what I was going through was real. The new working theory was that years of prednisone and cortisone had led to psychiatric issues.

One of the upsides of my symptoms was that I wasn’t allergic anymore and for the first time in my life in a long time didn’t need steroids. I had spent my entire life being allergic to everything around me — trees, dogs, food, mold, dust, smoke.. and this year I was fine. I didn’t have to take any of my inhalars for a year. My eczema also didn’t flare — my skin was clear. I spent the summer hiking through woods and touching plants in my garden that would have swollen my face to twice its normal twice. The proof was in the pudding when the fires and smoke hit WA. This had happened a few years before and my doctor struggled to keep me out of the hospital. This year I didn’t even need my inhalar. Something weird was definitely happening in my body.

When the fall came around, it was time for two procedures. First up, a colonoscopy to check out the gut up close. A working theory was that I had Crohns Disease. This is something that can attack other parts of the body. I’d really pinned my hopes that this was the diagnosis. It would suck because there is no cure, but it would be an explanation. Something real that proved this was an underlying medical problem. To my dismay, I passed the colonoscopy with flying colors.

Next up my thyroid surgery to take out the nodule. By the time they got it out, it was the size of a tennis ball — it was ugly and nasty and had worked its way around my spine and down under my collar bone. It had completely obliterated the left side of my thyroid. It was a lot more than they expected. I got very lucky as it was benign. But the big question was it is affecting my illness?

It definitely was because things started to change in my body from the moment it came out. All of a sudden after a year, I was hungry for the first time. By this point, I had lost 70 pounds and everyone was commenting on how gaunt and ill I looked. Doctors had moved past their comments of “great job losing weight” to “this isn’t healthy — I think something might be wrong.” I wasn’t just hungry, I was starving. This was the first month in a year I hadn’t lost weight. I was alternating between hot and cold, my sleep was a mess, I was exhausted and sluggish, I was constipated, my skin changed, but my mood was starting to be more stable. My wound also wasn’t healing. The surgeon had never seen anything like it. It took 7 weeks for the sutures to heal and the swelling to stabilize. The surgeon referred me to a nutritionist and a rheumatologist. I told him about my change of symptoms and he insisted there was no way the tumor had affected my health and that there was something else going on.

Yesterday, I had my post op follow up with the endocrinologist to review my blood work and levels. Luckily I had been having my doctor do bloodwork every 3 months throughout the year and grabbing thyroid levels. So this time we had a years worth of data showing the impact my thyroid was having and the difference in levels before the tumor came out and after.

The data showed that my thyroid TSH levels were getting lower throughout the year and high after the surgery — meaning that I was originally making too much thyroid hormone and then not enough. As the tumor took over the left side at an exponential pace, the right side had been doing extra duty to make up for it- some days it made enough, some not enough, some too much. This was all on top of my gut infections. As it stabilizes, its now not making enough.

Now its a journey to find the balance — the place of wellness where my body is in homeostasis. This means experimenting with thyroid medicine and lots of blood tests to find the level my body likes. We still don’t know if this is the cause. Its a wait and see game. I’m also finally scheduled in with a neurologist again to further investigate the brain fog, cognitive issues and persistent nerve pain and numbness.

I have good days and bad days but what that means has changed. My lows aren’t as low and my goo days are more functional. A good day used to mean I could do a paint by numbers and go for a walk. A good day now means I can read a book and write. A good day means I have extra some extra capacity to deal with extra things that come along — that extra forgotten school assignment, a call from the insurance company.

I’m not well yet, I’m not recovered. But every month I make progress. I hope eventually to be well enough to go back to work. I’m trying not to be mad at myself about where I could have pushed doctors harder, fought for better care, researched other alternatives. I’m trying to remind myself that this journey would have been hard enough at the best of times, but I did it during a pandemic while the kids were out of school and camp with no family support. For the first time in a long time though I’m excited that I might get well.

I’m incredibly lucky to have health insurance, disability coverage at work, a partner, financial support. All these things meant that my experience over the past year has been better than most. I can easily see how people end up in facilities for years, dead, or addicted to a whole wealth of substances. So many people don’t survive the year I had.

So what can you take away from this experience to avoid something similar in the future:

• Go to your primary care on a regular basis even when well. It is important that they see what wellness looks like for you.
• If you have insurance and can afford it, get regular bloodwork — every 3 months. Ask for more than the basic — get vitamin and mineral levels (B, D, Zinc), all thyroid not just TSH.
• Having your specialists or doctors in different systems is fine when you have the mental faculties to advocate for yourself. Its hard to coordinate when ill and adds more time coordinating, sharing records etc.
• Go with your gut. You know what well looks like. Don’t let a doctor convince you this is your status quo or that your gut is wrong.
• If the doctors first reaction without further medical investigation is women’s problems or psychiatric, get a new doctor. Either way most psychiatric problems have underlying medical issues that exacerbate. Therapy and a vacation aren’t the answer to everything.
• Document everything. Every symptom on every day. Having data will help doctors visually see what’s happening to you.
• Even if you are 300 pounds, weight loss without trying is a symptom. Don’t let them convince you otherwise.
• Bloodwork is an inaccurate science. There are things we can’t test for yet. Optimal ranges aren’t necessarily right for you.
• Doctors are taught to look for horses not zebras in diagnosis. However, rare disorders exist, peoples symptoms don’t follow the norm.
• Brain fog isn’t a working mom problem. Its a definitive symptom caused by brain inflammation. There are several cognitive tests and scans that can be done to see what’s happening.
• Find a support group of other people going through something similar. People who can help push you not to give up, lift you up on good days, give you ideas on how to push through.
• Find the balance between accepting the state you are in and fighting to change it. If you fight too much, you cause yourself suffering. If you don’t fight, nothing will ever change