Crazy Thyroid Story – Full Version


This is a long story.  There’s some very personal information in here – if that makes you uncomfortable, you might not want to read this.  If you’re short on time, read the short version.

In November 2009, I was diagnosed with hypothyroidism and put on synthetic thyroid hormone replacement.  I expected my symptoms to clear up, but instead, things worse!

The symptoms I had prior to the diagnosis were: dry skin, low energy level, depression, inability to lose weight, brain fog, decreased libido.  I was initially put on 55mcg of levothyroxine; felt no improvement.

February 2010 the dose was increased to 75mcg; symptoms continued.  Six weeks after the increase, new ones emerged: GI upset, breakthrough bleeding, painful bowel movements, painful intercourse, general pelvic pain, and severe mood swings.  This was happening while we were preparing to move from Georgia to Texas, so I didn’t see a doctor.  We got back to Texas May 2010, and shortly thereafter I ended up in the ER due to pelvic pain and bloody discharge.  They examined me, couldn’t find anything, and told me to see a gynecologist.

During my first visit with my OBGYN in August 2010, she informed me that there can be interactions between thyroid hormones and birth control pills.  I’d been on medication for over 6 months, seen multiple doctors (military life – no continuity of care!), had both prescriptions filled at the same time on multiple occasions, and no one ever mentioned there could be an interaction between these two pills!

She prescribed a birth control pill with a higher dose of estrogen, but that didn’t help. The moods swings and pelvic pain got worse.  I couldn’t have a bowel movement without pain and bleeding.  What was I supposed to do? I had to be on thyroid medication, but I didn’t want to get pregnant at my age!

Several months into taking the increased dosage of estrogen, I called my doctor’s office asking what to do, because I couldn’t deal with these symptoms any longer!  She suggested I stop taking the pill since my husband was in Iraq, and that if I felt better, we could proceed with surgical sterilization.

10 days after stopping the pill, I woke up feeling like a huge weight had been lifted off my shoulders. I felt clear-headed for the first time in what felt like forever! No more painful bowel movements, unexplained pelvic pain or breakthrough bleeding!  The other symptoms continued, but it was heaven compared to where I was! Life was enjoyable again (except the part where my soul mate was in a war zone).

In late 2011, my general practitioner moved to another practice that didn’t accept my insurance, so I had to switch doctors.  Life was super hectic between commuting 2 hours a day to a stressful job, trying to maintain a home, and studying for accounting courses, so I switched to a doctor within the same practice without researching him.

After my first thyroid panel under his care, he wanted to get my blood levels to “optimal range” by increasing my medication from 75 mcg to 125 mcg.  I was compliant and took the pills without question.  Six weeks after the increased dosage, all hell broke loose in my body!  I began experiencing the following: depressed immune system (strep throat, ear infection, stomach bug, and 2 upper respiratory infections over a 4 month period), irregular menstrual cycles when they had been regular my entire life (even without birth control), nausea and severe pain with ovulation (so bad that I thought I had appendicitis), menstrual bleeding heavier and more painful than ever, inability to handle any stress, intolerance to exercise, worsening allergies, weight gain, depression, and a general lack of interest in anything.  I perpetually had cystic, painful acne along my jawline that would throb and itch during ovulation and menstruation.  Within a few minutes of completing my morning ritual of getting ready for work (shower, fix hair, put on makeup, spritzing perfume), I would start sweating and shaking.  I thought I was in menopause at 35!

Life went on this way for months, but I muddled through.  I chalked it up to the stress of a new job, commuting, and school.  However, even when I finished school and was no longer a new employee, things didn’t get better as I had hoped.

September 2012:  we went out to celebrate my mom and my husband’s birthdays (they’re one day apart), and I was on my period.  Prior to dinner I showered, put in/on fresh feminine products and popped 800 mg ibuprofen. Dinner was miserable – all I could focus on was the pain of cramps and that my uterus felt like it was on fire!  Back at home we had birthday cake and cards.  I was still in severe pain, so it was time to put sweats on.   Before changing, I went to the restroom and was horrified to discover that in under 3 hours I soaked through a super absorbency tampon, a panty liner, my underwear, and my upper inner thighs were saturated with blood! This was NOT normal for me, and that’s when I knew it was time to get help. The following Monday I called to schedule another appointment with my gyno.

When I told her about the hell I had been experiencing throughout the year, and she thought it was due to my medication. She did a pelvic exam, found no abnormalities, and ordered a blood test. The next week I received a letter stating my thyroid was fine, and she wasn’t sure what else to do.  An ultrasound revealed one small fibroid, surgery usually isn’t recommended for only one and it could come back, so for me it wasn’t a good option. Now what?  I can’t live the rest of my life this way!  It was so frustrating!

The only option left was to research whether lifestyle changes could improve my symptoms.  I read books on hypothyroidism, one written by a doctor and the other written by a patient advocate (both well respected), one on bio-identical hormones, one on curing women’s health issues with vitamins, and one on the toxins found in personal care products and cosmetics, and more.

Finishing the books prompted me to ponder my history with hypothyroidism.  It dawned on me that every time my dose of hormone was increased, my symptoms worsened.  I also recalled how amazing I felt after I stopped taking the pill, so it made me think that the synthetic hormone is the problem.  Using my research as a guide, it was time to begin my journey into lifestyle modifications.

I cut my 125 mcg pills in half.  After a few weeks my brain was slightly less foggy and it was somewhat easier to get out of bed in the morning.

I added a few more vitamins/minerals to my regimen:  selenium, magnesium, CoQ10, Zinc, L-Tyrosine, glutathione, additional amounts of vitamins A & B, and tea with ashwagandha.  Within a few weeks I noticed that my mood improved and energy level increased.

Next was personal care:  I took the extreme measure of replacing them all at once.  The goal was to rid ourselves of as many endocrine disrupting chemicals as possible.  We banished synthetic fragrances – including perfume, air fresheners, laundry/dish detergent, candles and plug ins!  We went to the health food store armed with a credit card and a book so we knew which chemicals to avoid.  We spent over $300 to replace all our personal care products (and tossed the toxic stuff soon thereafter).  A few things I noticed immediately after the switch: (1) I didn’t get stinky as quickly, (2) I no longer woke up in the mornings with a thick layer of oil on my face – because I wasn’t using harsh chemicals that stripped the natural oils off my skin, it wasn’t over-producing oil,  (3) the ever-present cystic acne along my jaw-line cleared within a few weeks!, and (4) no more sweating and shaking after using the new combo of products!

Despite the improvements, there were still problems:  (1) I was having issues with allergies, (2) it was hard to wake up in the morning and (3) there wasn’t enough energy to get through work, commuting, exercising, cooking, cleaning, etc., (4) there was some lingering apathy, (5) no libido, and (6) lack of desire to do anything social.  Time to implement another lifestyle change.

Gluten intolerance affects many people with hypothyroidism, so I decided to eliminate it from my diet.  After about a week, I noticed some improvements such as a little less brain fog, and most of the GI upset I had been experiencing cleared up.  Progress!

I was still experiencing post nasal drip, sinus headaches that morphed into migraines, and phlegm build-up.  For some people, the casein protein found in dairy is a contributing factor to allergies, and since they were a daily issue for me, I eliminated dairy.  We bought almond or coconut milk versions of yogurt, ice cream & cheese.  Amazingly, within just a few days I was phlegm/post nasal drip free and hadn’t had one sinus headache!

We implemented a “wear gloves and a mask when using household cleaners” rule.  Wanting to replace them, but unsure of where to start, we took a chance on a natural all-purpose cleaner we found on sale at a discount store.  To our surprise it worked better than the toxic stuff!  When we learned that my husband was being reassigned to Korea, we made the difficult decision for me to stay behind.  We moved from a house into an apartment closer to my office, and we left behind the toxic cleaners behind and bought safer ones.  No more scrubbing with bleach filled cleaners, which always gave me a headache anyway.

In March 2013 I went to see my doctor and asked him to put me on a natural desiccated thyroid hormone in lieu of the synthetic version.  He agreed, but he prescribed 120 mg despite the fact that I told him I was only taking half my 125 mcg pills of levothyroxine.  The dose was too high, so I didn’t tolerate it well.  He decreased the dose to 90 mg – still too high.  In July I asked for another decrease, but he wanted to put me back on synthetic despite my protests.  When he said “you’re thyroid’s going to shut down eventually anyway”, I shut down.  I was done with this doctor.  He didn’t listen, he spewed the same statistics every time I was in his office, and he only wanted to put me on the “average lady dose” regardless of the fact that it made me miserable.  I left his office with the synthetic hormones he insisted I take (they immediately went in the trash) and NEVER went back.

Later that day I made an appointment a licensed medical doctor who practiced holistic medicine and had great reviews.  He couldn’t see me for a few weeks, but it was worth the wait.  I decided to stop taking my thyroid medication and see how things went.  My hope was that since I’d made all these lifestyle changes, I wouldn’t need medication.  As much as I wanted to quit cold turkey, I knew better, so I weaned off.  I took one Armour pill every other day for a week, and on the last day I took half.  Much like when I got off estrogen, 10 days in the brain fog lifted.

When I saw my new doctor, he looked at my prior blood work, listened to me, and prescribed lifestyle changes (most of which I was already doing).  He ordered new labs, had me complete a symptom form, and used them to make a diagnosis of hypothyroidism caused by adrenal fatigue.  Since I was already off thyroid medication and wanting to see how I did without it, he suggested we try a combination of inexpensive natural adrenal and thyroid supplements.  Things were going fairly well until ovulation when I developed the tell-tale acne on my jaw and some pretty severe ovulation pain.  I quit taking L-Tyrosine and things went back to normal.

Once things settled down, it was time to implement a few more changes:  Add regular practice of Kundalini yoga, and remove endocrine disruptors from our diet.  This was a multi-step plan:  (1) continue to avoid heating food in plastic or using non-stick cookware, (2) continue avoiding gluten, dairy, unfermented soy, white sugar, and fluoride in drinking water (3) eat foods with real ingredients:  no preservatives, dyes or artificial flavors, and buy mostly organic, (4) if I buy food in a can, the lining is BPA-free.   These changes proved to be difficult to implement, since it’s hard to find food that meets these criteria on grocery store shelves.  It required reading EVERY label, and banishing some of my old favorites.

January 2014, after 6 months of being off thyroid medication (except for supplements), dry skin and a little depression started to bother me.  Reluctantly I spoke with my doctor about starting  medication again, but this time at a very low dose (15 mg Armour).

Shortly thereafter we moved again.  Another new doctor; this one sent me to an endocrinologist.  Still on the 15 mg of Armour but no longer taking the adrenal/thyroid supplements.  My blood work is in normal range, and most days I’m symptom free.  Allergies are now truly seasonal instead of year round, I rarely get headaches, have more energy, a clear head, and (sometimes) a libido.  If I don’t, it’s usually because I’ve slacked on diet, exercise, taking vitamins, or a combination.

The toxins present in our home have been greatly reduced since implementing these changes.  They haven’t been eliminated, and never will be.  I may be a little crazy, but I’m not delusional.  There are certain things that are beyond our control.  What I’m focused on is reducing our exposure to toxins by changing what I can.  Do I expect you to go out and do all these things all at once?  No way!  Do I expect you to make all the changes I did?  No.  I want to share my story, and if it inspires you to make changes that are right for your family, great!

This journey has been difficult.  There have been (and still are) ups and downs.  One thing that has remained consistent throughout the years has been the love and support of my wonderful husband.  He’s been patient with me when I stop mid-sentence because I forgot the word I was trying to say, forgot a whole conversation,  had no libido, or couldn’t muster the energy to leave the house.  He has cleaned, cooked meals, ironed clothes, mowed the lawn and washed the cars while I was on the couch with no energy.  Anything he could do to take stress off me, he willingly did without complaining or making me feel guilty.  He’s indulged me every time I decided to make a change, and even though he doesn’t have hypothyroidism, he feels better too.

If you’re still reading, thank you!  This is a really long post, but it’s the only way I could express exactly how I got where I am today.  Many people don’t understand the the toll this disease can take on a person.  People may think I’m crazy for going to these extreme measures, but if you’re feeling b ad enough, you’re willing to try ANYTHING to feel better.  If you learn from my experience, then starting this blog was worth it!

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