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Patient Beware: My Misdiagnosed Life-long Thyroid Journey

Patient-Beware-My-Misdiagnosed-Life-long-Thyroid-JourneyMelissa Phipps, Thyroid Thrivers
Thyroid Nation

35 years old
Vermont, USA
Diagnosed in 2010

Where to begin… My Hashimoto’s Thyroid story is a reverse one…of sorts.

At 9 years old, I moved away from everything I knew, with my parents and brother. Away from a small, town in Vermont, where I had tons of cousins and aunts and uncles and grandparents, to Virginia where we knew no one. Then I started my new school with a teacher who was young, new, and screamed and yelled when frustrated. Doesn’t sound like an earth shattering experience, but for me and my body, it was. My hair began to fall out in clumps. I was an emotional roller coaster and the doctors chalked it up to being close to puberty and stress. All the testing they did came back ‘normal’. This is where I believe all my thyroid issues began.

Did they discover it was my thyroid at this point? Nope….

My-Hypothyroid-Trauma's-Will-Make-You-Question-EverythingAt 13, I started having seizures for no apparent reason. The doctors did thousands of dollars worth of testing; all they could come up with, was that I was having very serious hypoglycemic spells that caused my brain to shut down, to protect itself. However, these ‘spells’ looked like grand mal seizures and were violent, lasted several minutes, caused convulsions, I would turn stone gray, when I came-to my head would be ringing so loud I couldn’t hear anyone and I couldn’t stand or walk…. Craziness. Can you even imagine? At age 13, no less, when you are already going through serious hormonal and body changes. I remember a particularly embarrassing ‘spell’ that happened while in biology class, my junior year of high school… uggh. I was so out of it when I came-to that when the teacher asked if I had any friends to help me to the nurses office, I started to cry and said no. The thing is, my best friend was in that class with me. She still teases me about it; it’s funny now, 20 years later.

Did they discover it was my thyroid at this point? Nope….

My mom was/is so awesome. She did research and discovered how certain foods seriously affected me and adjusted the entire house to better suit our health. Eventually, she removed processed foods and refined sugars (to me and my brother’s dismay) and we drank water and juices and ate whole foods. Little did I know how crucial that was to my health. It’s how we had eaten in Vermont, before the move, fresh from our family’s farms.  Looking back, aside from the stress of moving, we changed our diet drastically once in Virginia. Though we ate the same things they were from the grocery store where the meats probably had added hormones and the veggies weren’t family grown a and canned. Unfortunately, we no longer had access to our Vermont way of eating, once in Virginia. I’m sure this diet shift was a contributing factor.

StaceyRobbinsBy my teens, issues that weren’t an issue as a young child, were becoming a problem. Doctors wanted to label me ADHD or even bipolar (they weren’t sure which at this point) and put me on all kinds of medications. I wanted to wait. I already felt different, but to label me different, to put it on paperwork that forever would show up with my name? No, thank you. There were obvious and apparent concerns with my attitude, temperament and behavior; I spoke exactly what crossed my mind, I had no filter and everything made me cry.  Even a sad commercial would have me in tears and I’d have a lump in my throat so bad, that I couldn’t breath, unless I cried.

Sadly, these issues carried over into my college years. I worked full time in the retail world, where my manic state was often appreciated. I worked in teen stores so my lack of filter was usually considered ‘cool’. But, I also bartended and was a full time student and that is where most of my problems occurred. My memories of college are filled with regrets, things I wish I could go back and undo. It’s a terrible feeling to know and remember how I burned out so many people and should-be friends. I cannot count the number of bridges I burned and all because my hormones were all over the place. My ‘ground control’ organ, my thyroid, was not working; not a bipolar disorder. I didn’t mean to act like I was 12 years old. I didn’t want be on or share the emotional roller coaster I was on. I couldn’t help it. I had the emotional maturity of a child. It was out of my control, but I was becoming aware that something would need to be done about it.

Did they discover it was my thyroid at this point? Nope….

When I returned from college, I was 6 months shy of a degree after 4 years of classes, and living with my parents. I finally decided that I would have to go on medication. I didn’t keep a job very long and I had no friends to speak of.  I was all over the place. Thus, began the journey of accepting the doctors’ diagnosis of bipolar disorder and treating it accordingly.  Medications, warnings, side effects, feeling lost some days, emotionless others. It was a rough time in some ways, and yet I was finally ‘well’, once I started the medications. Now, I  could be happy working in one place and have healthy relationships, unlike before. Looking back, it also gravely masked the on-going and growing symptoms of the underlying issue: hashimoto’s.

The symptoms were diagnosed correctly. I would flip from manic to depressed (sometimes several times an hour) Additionally, I didn’t have the ability to conceal any of my emotions- if I felt it, you knew it. What the doctors got wrong was the cause. The thyroid, dishes out the bodies hormone requests. Mine was just doing a sad job of it.  Since western medicine treats for symptoms, once my doctors felt bipolar was my diagnosis they gave me the medications they felt I needed and stopped looking for the ‘why‘. We all need to dig and look for our ‘why‘; what our bodies are trying to tell us. What bipolar symptoms are today, being a thyroid issue, could progress to a diabetes, dementia, and other autoimmune diseases, later. The treatment I was on, was not treating my body or these other future possible issues, just the one set of symptoms they saw at that moment. We need to search out our ‘why‘ and be our own best advocates.

Did they discover it was my thyroid at this point? Nope….

Medications masked the symptoms, but a mask can only last for so long….

I met my wonderful husband during this time. I was 28. We are a perfect match, him and I. After so many fiery endings to relationships, he and I are an absolute perfect fit. We were married 10 months after meeting and pregnant 3 months later. I had prayed, for so many years, for a spouse who would be supportive and love me for me. Not only is he those things, but when you put your faith in God he always goes above and beyond. My husband is so much more then I prayed for. God is so good. Ephesians 3:20 “Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us…”

Unfortunately I was so very sick during my pregnancy. At 37 weeks, my precious, unborn princess became non-active in the womb. Though I thought I was being paranoid, my mom encouraged me to get checked at the ER immediately. She said ‘A mommy knows when something’s wrong’. My OB was out of state for the weekend. Waiting until my next appointment seemed too far away (4 days out). Thankfully, I listened to my mom and my gut. My daughter didn’t have enough uterine fluid and was suffocating. They delivered her by emergency c-section, 18 hours later. They couldn’t even induce me to let me do it naturally, the situation was that dire.  She would have been stillborn, had i waited until my next OB appointment. I can’t even imagine…

Did they discover it was my thyroid at this point? Nope….

My-Hypothyroid-Trauma's-Will-Make-You-Question-EverythingThe postpartum experiences I had, after she was born, I don’t wish upon anyone, ever. The anxiety and the sheer exhaustion, had me thinking about scary things I can’t even put into writing yet. Unimaginable things. I’d start crying uncontrollably for no reason; the entire experience was so unnerving and not me, at all. I also had no milk to nurse which made me feel so  incredibly sad and disappointed. Not to mention it made me feel like a failure as a new mommy. My body wasn’t regulating my milk needs, just like the lack of uterine fluid. I had to supplement with formula; even in the hospital the lactation specialist noted I wasn’t producing enough milk. Yup, thyroid controlled….who knew?   I would pump, then nurse, then make her a bottle, feed her the bottle, change her and lay her down, then clean the pump equipment, and the bottles, then eat or do 1 of ten million things, and start it all over. I did that 24/7 for 6 weeks, with really no sleep.

I was so tired, I would hold her at night in the rocking chair with blankets piled around my lap, so that if I passed out, I wouldn’t drop her. I would call my sister-in-law in tears, while in route to her house, saying she needed to meet me in the driveway, that I would be getting out of the car and walking away, because she wouldn’t stop crying and I was afraid of myself with her. No one should ever have to go through feeling like that towards her baby! EVER! And let me remind you, I was on over 3,000 mg a day of anti-psychotic drugs for my bipolar diagnosis. That’s how bad it was.  Insane, really, when I think about it. (Which I try not to.)

Did they discover it was my thyroid at this point? Unbelievably, NO!….

I also started putting on weight, me who could eat anything all day long and could still lose weight. I would spend hours with my dog climbing rocks at the river during the week and would roller skate at high speed for an hour and a half on Friday’,s to unwind and burn off some energy. I just couldn’t understand.

About the time when my daughter was 16 months old, I began a serious running regiment. Like I had in my college days. I ran a mile every day, with very few exception days, for 2 months. Instead of getting easier and easier, it was becoming increasingly more difficult. I began to swell. I hurt in my joints so bad that I couldn’t even lift a gallon of milk from the fridge. I went from my heavy size, for me an 8/10, to an even heavier 14/16 in 2 months, RUNNING! I went to my primary care physician, whom I’ve known since I was 14 and knows me well and said, “what gives? I’m working out again and this is what’s happening”. He considered fibromialga and wanted to put me on more medications, but I requested a panel of blood work and he had a few ideas, so he agreed. He tested me and what we found out was shocking.

Did they discover it was my thyroid at this point? YES!!!!!

Weight gain is what brought out my diagnosis? Not the 9 year old with serious health issues, or the teen with unexplainable, severe seizure-like ‘spells’, or the serious menstrual issues (I couldn’t go into everything, but my periods were debilitating once they started and lasted for upwards of 8-10 days even as a teen) or the bipolar diagnosis, or the issues during my pregnancy, or after? None of that seemed to red flag my thyroid… until my PCP (who knew me well enough to know when I said I was running and eating well, that I truly was) finally found discovered what my issue really was.

Though I feel like, looking back, I waded through a sea of red flags my entire life, I was relieved to have an answer. With this answer, I was able to reverse my bipolar diagnosis and I no longer needed those medications! FABULOUS!

Synthroid helped, but I still had terrible periods. After my diagnosis, we decided to try for a second child. Armed with the ‘magical’ Synthroid, I thought I would have a perfect and smooth pregnancy. At this time, I did notice my bipolar medications were making me a zombie. We backed off the dosage until I was no longer on any medications at all. What an amazing feeling! They were dangerous medications to be on, while pregnant. I was able to reverse my diagnosis of bipolar with the new discovery of hypothyroidism.

During a conversation with my primary care doctor, he mentioned that my thyroiditis was an autoimmune disease called Hashimoto’s disease.  He said the care protocol didn’t change either way from his end (autoimmune disease or thyroid disease alone) so he didn’t feel he needed to mention it. Huh. Another example of how the ‘why‘ just isn’t part of the equation in western medicine. He didn’t know all the things thyroid issues could cause, except the issues that would go through his office, so he acted on what he knew. Our medical system is so compartmentalized that autoimmune disease are being treated by 5 or 6 different doctors. Unless they got together to compare notes, they’d never be able to see the big picture. Again, be your own best advocate.

Back to having a baby…

My periods would last for upwards of 10 days, at this point, and stop for only a week to 10 days before starting all over. Then, my new OB (I wasn’t impressed with the first one after almost losing my daughter) discovered I had PCOS (poly cystic ovary syndrome).  WOW, really? I was put on Metformin, an insulin medication. I noticed I was back to my sugar issue, I had come full circle from when I was a kid. There had to be more to this, to achieving health, then one pill. (that’s for another story). Insulin and refined sugars are my Achilles heal and what triggers most of my inflammation and symptoms.

It took a bit for the Metformin to kick in, but we were able to conceive. I had another miserable pregnancy, but in a different way. I went through violent illnesses, lost tons of weight and began having panic attacks. I was so exhausted, again, and could only be up and about for small amounts of time before I’d have to lie down. My daughter, just a bit over 3 at this point, began telling her Nana that she could go rest because they had been playing for awhile already and she must be tired. I cried when I heard that. She was so used to me telling her that I needed to rest a bit, that she thought that’s how all adults worked.

The panic attacks were so severe, it caused me to give up all of my then favorite TV shows. I cut them out cold turkey, no more Criminal Minds, or Law and Order, or SVU, or Bones, or CSI; none of it. All that ‘getting into the criminal’s head’ was causing me to be terrified to empty the dishwasher because I would need to put the knives away. I had nightmares that made those shows look tame. I truly don’t think this way, it wasn’t me. I was being betrayed, by myself? Try explaining that to someone…. It was terrifying. I’d start feeling light headed and dizzy and my racing heart felt like it was going to explode right then an there. It would come in waves and I started to realize what I ate was triggering most of it. I was back to figuring out my own, ‘why‘.

I began to research… like crazy. This is what I found….

Again with my sugar issue! I found out my symptoms were caused by ‘reactive hypoglycemia’. Does the word hypoglycemia ring a bell??!!! I would end up flooded with insulin all at once, a bit after I’d eat, like a delayed response that then needed to make up for lost time. This flood of insulin would cause an influx in sugar and cause the symptoms I was dealing with –the spells of terror, dizziness, and a racing heart; then I’d crash. I was starting to accept that sugar was my enemy and a major player in my illness. I switched to foods with a low glycemic index and slowly, thankfully, the spells faded. Food matters!

DatisKharrazianMy son was born and though I wanted to try for a natural birth I ended up having another c-section. I was still so hopeful that this time, I would get to enjoy breastfeeding him. Disheartingly, that is not how it worked out. Though my thoughts were my own, and I enjoyed his presence and seemed (compared with my daughter) to have limitless peace, my thyroid issue had caused adrenal fatigue. During my rough pregnancy, I was robbing my son of cortisol to make up for my lack of it. (Thank you to Dr. Datis Kharrazian for the awesome book “Why Do I Still Have Thyroid Symptoms’, that explains this phenomenon). He had a severe allergy to milk and intestinal issues because of this. He would scream and scream when being fed and threw up almost everything he ingested. I was heartbroken. A specialist recommended Nutramigen baby formula, and though very expensive, it did seem to help for about 5 months. He stayed under weight, though, very tall, and he still threw up often, but he was eating and crying less. His lack of weight gain concerned his specialists so he was switched to prescription food at $1000 a month for 4 months (at around 8 months old) until I had had enough and claimed his healing in Jesus’ name. With his doctors approval at 12 months old he was dropped from the prescription formula and switched to a milk based Gerber formula and to the doctors surprise he is doing so very well! My faith is always stronger on my children’s behalf then on my own. Something I am working on.

All of this trouble was because of my thyroid and my angry immune system and my extremely overworked adrenals. I hadn’t achieved wellness with a pill, neither the Synthroid nor the Metformin. Not even close. Based on my physicians, though, that’s all it takes….

I began reading everything I could, which I am still doing. I also went back to my word, God’s word. Sadly there are many in the thyroid community that believe God has nothing to do with it, yet they’ll admit that spiritual wellness and emotional well being are a must to achieve any wellness at all. Why do they think that is? We are spiritual beings, God made us to commune with him. When we don’t believe in something, there is a void we have to fill somehow. Some fill this void with meditation, or exercise, or nature, or relationships, all good things, but not enough on their own. I chose to go to the source, the creator of heaven and earth, for my well-being and it has served me well. Who knows me better then He?

My-Hypothyroid-Trauma's-Will-Make-You-Question-EverythingI am also on a low carbohydrate, low glycemic index meal plan. I eat almost no refined sugars (and I pay dearly when I cheat (‘A Me Moment’ is my blog about this). I take time to relax, usually by taking walks by myself with my camera (see my blog ‘A Walk In Pictures’).  Additionally, I have a fabulous relationship with my husband and my family who are my support and awareness, ha! They let me know if things seem off, so I can address them and they do it with love, understanding, and kindness. I am so truly blessed.

So many places the system failed me, and it fails others. It’s got to stop!

I am in the process of finding a grant so that I can go back to school to become a Naturopath Wellness Nutritionist. Because of all my undiagnosed thyroid issues, I want to help people going through one, two, or all the things I have endured. So many places the system failed me, and fails others. It’s got to stop. Through my faith and my determination, I plan on making the biggest impact possible, so that we can be our own best advocates.

It starts with wisdom, seeking knowledge and CHANGE! We can all make a difference if we stick together as Thyroid warriors and Thrivers! Here. I. Go.

This article is offered under Creative Commons license. It’s okay to republish it anywhere as long as attribution bio is included and all links remain intact.

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  1. [* WordPress Simple Firewall plugin marked this comment as “trash” because: Failed GASP Bot Filter Test (comment token failure). *]
    Thank you Danna for posting my story. I’m so honored. It was quite a journey, getting this on ‘paper ‘ but it was so worth it. You are so very patient and gracious. Thank you for making this process a smooth one!

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