From Misdiagnosis to Healing: My Chronic Illness Journey with PCOS and Hashimoto’s

It was another morning where getting out of bed felt like climbing a mountain. My joints ached, my head was foggy, and the fatigue never seemed to end.  I was desperate to find answers. When I finally found a doctor to listen, I ended up worse off.  Being essentially poisoned by a doctor who was just trying to make another buck, while telling me it was all part of the process.

I will get back to that story in a minute. But, let’s back up a second to let you know how I even got to this point. 

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The One Where My Story Begins

Growing up, I was a fairly healthy kid.  I had a few weird issues pop up (ie. syncopal episodes and some allergies), but nothing too severe.

Welcome to the real world, I guess?

That all started to change when I got to college in the fall of 2011. During my first semester, I became very ill, ending up in the hospital multiple times. Eating was a struggle. I kept dealing with hives and other allergy symptoms and was chronically sick. I started dealing with brain fog, fatigue, among other symptoms. Doctors came up with a dozen diagnoses: allergies, chronic bronchitis, just adjusting to a new space, exercise-induced asthma, etc.  

Heading into my second semester of my freshman year, I was discussing this with someone. They said mold was found in other dorms last summer, which was supposedly removed and kept quiet.  Bingo.  I found the issue.  The university relocated us temporarily and “removed” the mold. We were told it was taken care of and to move on.  Their “mold expert” (why?), who didn’t know black mold was toxic (okay…), said there was no concern.

Let’s advocate for everybody (but yourself, obviously)

I made sure this was addressed university-wide. An email was sent out, air quality tests were done, and mold remediation was completed in other infected rooms. The school then went into defense mode. They gave me a few hundred dollars to “cover my expenses” and essentially threatened me if I chose to sue. (Which I never brought up to them. They just proactively expected me to take this action, as I should have.)

I had no money and was starting to feel better, so I let it go. Many of my health issues continued (ie. acid reflux, brain fog, etc). The doctors chalked it up to weight gain from the steroids I had to be on during the mold illness.  They told me losing weight was the answer to my remaining symptoms, so I did just that. I lost 70 lbs in 6 months.

#SuckItUp

I felt somewhat better. The doctors didn’t really care to help me with what I was experiencing. So, I continued on my way. Around this time, my menstrual cycles worsened, and I was put on birth control.  My periods completely went away for years. The doctors said, “Well, at least you don’t have to deal with that anymore”.

The joint pain, fatigue, brain fog, and similar issues got worse, and the doctor said it was in my head. Wellbutrin (for depression) and therapy were her solutions.  My weight began to creep back up. Even with eating only 1200 calories a day and working out 15+ hours a week, it increased. (I didn’t understand at the time how detrimental this was.) The doctor recommended I eat less and exercise more.  

Functional V. Traditional Medicine: where to turn?

I found a functional medicine doctor. She said I had biotoxin illness from mold. She also said I had reactivated Epstein-Barr Virus. Additionally, my body wasn’t producing cortisol properly. Finally, she noted that my hormones were out of whack.  She put me on a corticosteroid that I was on for two years. This lowered my immune system and led to me being sick nearly constantly.  I stopped using birth control at this time as she recommended. My periods eventually came back after a 6-year absence and returned with vengeance. 

I went back to my primary because I wasn’t a fan of everything the functional medicine doctor was recommending. (coffee enemas? Absolutely no, thank you.) I asked about running some blood work, which she again refused and encouraged therapy. 

Next, I saw another doctor who diagnosed me with PCOS and suggested birth control as the only option.  I agreed to try birth control one more time. This decision caused me to have my period for 3 months straight. Additionally, I gained over 30 lbs. So, off the birth control I went.

The One Where the Story Gets Good (but my health doesn’t)

During this time of my life, I moved and was searching for someone who would listen.  I finally found an organization specializing in hormonal wellness.  They were private pay, but the doctor was highly regarded. I could meet with them virtually, and I was desperate for answers… and answers they gave me.  I was diagnosed with Hashimoto’s Thyroiditis. They told me almost all my numbers were in normal ranges, but the antibodies were elevated. This is where the autoimmune part comes in.

I cried because I finally felt validated and like I had real answers.  They were probably just as thrilled, because I was their ideal patient (desperate and willing to do anything for my health). They gave me a treatment plan that included THOUSANDS of dollars of prescriptions and supplements.  I told them I absolutely could not afford this and to reduce it to the bare minimum. 

Ever heard of a red flag, Amber?

After a guilt trip of not prioritizing my body (should have been my first clue), they reluctantly came back with a much smaller list. It was still going to cost me a fortune, but a little more affordable than the original list.  I started that protocol as requested and began to feel worse.  They said that was normal. 

After three months, my bloodwork confirmed a worsening of my chronic illnesses and the doctor said it was part of the process.  I discussed this with a friend who said I should try to trust the doctors, instead of always questioning them. I said she was probably right and decided to see this through. (Spoiler Alert: this was not the right decision)

The One Where I am Stuck in a Nightmare

For the next three months, my hair fell out in clumps, I gained weight rapidly, and began to retain a lot of fluid. I had really low blood pressure that, at times, led to fainting. My tongue also swelled, I became even more fatigued, was in pain, and had severe brain fog. I was miserable and could barely stay awake or walk. I was living in my own personal nightmare.

When speaking with my mother one day, when it was unbearable, she mentioned that it sounded like a drug interaction. She suggested I go to the ER.  I called my doctor to let them know that is what I was going to do. They insisted I didn’t need to go to the ER. (Come on, Amber, we are no longer dealing with red flags. We have full-blown emergency sirens blaring.) 

#ListenToYourBody (like, really)

Per typical Amber, I listened to the doctor and didn’t go to the ER. (Exact opposite of listening to your body, but okay.) However, I did stop taking all of the medications other than the prescribed thyroid medication. And, I began to do research (finally). That research led me to the realization that I was on a medication that is used for high blood pressure. They knew I had low blood pressure and syncope issues. 

That wasn’t even the worst of it. The real kicker was the iodine supplement, which was over 8,000% of your recommended daily value! They claimed my body obviously had a weird reaction and that they had never seen this issue. .They prescribe it to all of their Hashimoto’s patients. 

Recently, I found out that this much iodine can actually slow down thyroid production and can be very detrimental to people with Hashimoto’s, even triggering hypothyroidism¹. Multiple doctors I have spoken to since this agree with this take as well.  Also, “Ingestion of over 1.1 mg/d of iodine may be harmful and can lead to acute or chronic toxicity” (Southern and Jwayyed)². This supplement had 12.5 mg per serving (see below).

My updated blood work numbers were so bad that they thought there was an error and had it redone. It impacted my thyroid and many other functions in my body. These included my liver, cholesterol, and immune system. I was also experiencing the symptoms of iodine toxicity.

Ope, that’s not suspicious at all

Upon expressing my concern about my care, the doctor abruptly left the organization without informing me. The person handling my complaint also left the organization, and the assistant moved to a different role. (All coincidental, right?)

They refused to reimburse me, but offered discounted services for future care.  Because I was in so deep financially, I decided to hear out one more doctor. She agreed that the previous doctor was at a minimum negligent.  Then, she suggested I take liquid nutrients “that are safe because they are given to hospital patients when they can’t eat“, get on GLP-1 immediately, and try out a few thousand dollars in new supplements.  She also informed me that her medical care was “guided by her faith instead of science”. 

The One Where I Finally Wake Up

Needless to say, I did not return.  I realized that the only person going to advocate for me was me. I asked for my medical records, which they never sent me, and they have dodged all questions. They also tried to force me to sign a new waiver during this time. It conveniently noted that they used experimental medication and would not be held liable for negative reactions, including death (lol). The doctor did not disclose this to me at the start of my care.

I looked into suing them, but couldn’t get a lawyer to take on my case because of how many states it involved and how complicated it is.  (So, if you know of anyone, let me know.)

Also, in case you were looking for the name drop, here you go! The organization is Dynamic Health Institute (dynamichealthinstitute.com). And my provider was Dr. Esti Bakty, ND. Thank you all for absolutely destroying my health and derailing my life!

So I finally woke up…now what?

During this, I considered a leave of absence from work. They wouldn’t or couldn’t certify the leave paperwork for me. I also couldn’t get established with any other provider in my area due to wait times.  I was so sick, burnt out, and angry, I didn’t know what else to do.

So, I left my job in my dream career field that I had just obtained my Master’s in a few years prior. (Wait until you find out I was a fraud INVESTIGATOR during this…ya…I don’t want to talk about it.)

#PIVOT

I moved back to my mom’s temporarily to start healing. Then, I decided to start fresh in a new state. I made the move from Iowa to Nashville with little more than my desire to fully heal and leave the past behind.

And that is where my journey here began! 

The One Where I Turn Anger into Action

If anything above frustrates you even a little, or you have a similar story, you can imagine just how hopeless and angry I felt.  I eventually realized that anger wasn’t going to solve anything. So, I put that energy to good use.

I had been researching for years, but really dug in further.  I tried a range of Eastern and Western medicine techniques. And, I spoke to experts in many fields. I ran numerous experiments on myself to see what foods, workout plans, and medications helped the most. Overall, I gained knowledge about the connection between trauma and physical health issues. I became an expert on my body and my own biggest advocate.  

Time to turn lemons into lemonade

Today, I am still in my healing journey, but I have come a long way in managing my chronic illnesses. One thing I am most proud of is that I no longer fit the diagnosis for PCOS!  I am working on compiling the best care team to support me and advocate for me. With that, I decided to help others do the same.

I have spent the last two years taking courses and obtaining my health and wellness coaching certification.  Now, I am a Board Certified Health and Wellness Coach and also have my Yoga Teaching Certification (another certification I picked up on my journey to find answers about my health). 

#BalancedwithAmber

I am learning to listen to and love my body (finally) and find balance in my care, blending physical and mental health, Eastern and Western medicine practices, and doing what is best for me, regardless of what worked for anyone else. The best part is that my journey is helping me do the same for others!

How am I helping others, exactly? I talk all about this in my next article – From Healing to Helping: Services to Support Your Wellness. I explain all about how I can support you on your own journey. And, I go over ways you can support me on this journey without spending a dime, which helps provide these services to others at little or no cost.

Final Thoughts

Well, that was a lot, but it is only a small part of my journey, and about the shortest I could have made this story. This doesn’t even begin to cover my experience with the extreme burnout throughout this. It also doesn’t address how much overworking and not taking care of my body properly exacerbated my symptoms or how trauma impacted my physical health. If you want more on these topics, let me know! 

This is not where my journey ends. It is just the beginning and I have a whole new chapter of my life set to start next year as well, so stay tuned for more on that! Most importantly, I am glad to have you on this journey. It is only up from here for us all!

If you have similar stories, tips, suggestions, or anything else to share, drop a comment below, or reach out! I would love to connect. I will also be sharing much more of my journey and day to day on Instagram and Tik Tok so drop me a follow there is you want to continue to join me on this journey!

1. “Hashimoto’s Disease | NIDDK.” National Institute of Diabetes and Digestive and Kidney Diseases, www.niddk.nih.gov/health-information/endocrine-diseases/hashimotos-disease#diet. ↩︎
2. Southern, Alison P., and Sharhabeel Jwayyed. “Iodine Toxicity.” PubMed, StatPearls Publishing, 2021, pubmed.ncbi.nlm.nih.gov/32809605/. ↩︎