| Thyroid Success Stories |
February, 2001
Dear Mary,
After reading your book and sympathizing with so many other people’s experiences, I was inspired to write down my own story, and it has been such a therapeutic process for me to put my story down on paper! I wrote for almost 2 hours! I applaud you for the work you put into creating an educational web site and book - certainly you are doing your part to help change people’s lives! I always believe there is a reason for everything - and have often thought that my hypothyroid was God’s was of slowing me down and making me smell the roses! I believe one of the most reassuring and helpful things we can do as thyroid patients is to share our experiences, and try to educate others. So, here’s my story (sorry it’s so long!)
I appear to be a fit and healthy 32 year-old, which is probably the main reason my thyroid disease went undiagnosed for so long (approximately 6-7 years). My symptoms became noticeable about 7 years ago - the year my husband and I moved to Massachusetts and I got a job as a fitness specialist at a resort spa (Canyon Ranch). I loved my job in fitness, but became increasingly frustrated with my weak and achy muscles, my inability to lose weight although I was teaching 1-2 fitness classes every day and eating healthfully, and mostly my constant fatigue. I remember being so tired that I had to take breaks and rest my arms when washing my hair. Sometimes I felt my knees would buckle when descending stairs.
The fatigue upset me so much because I was surrounded by energetic, healthy people who were all doing wonderful, fun things, and I felt that I was too tired to achieve any of my goals (professionally and physically). But I continued to put on a happy face and kept believing I was fine (because that’s what the docs told me) and that if I continued to ‘fake it’ I would eventually ‘make it’. At Canyon Ranch I had access to all the wellness education and spa services I could want, so I attended lots of wellness and nutrition lectures, had acupuncture and regular massages, learned meditation and yoga, even saw a therapist.
But the more I tried to get better and stronger, the weaker and more depressed I became because nothing I was doing was helping. I felt like a complete failure, and even developed a binge-eating disorder to help comfort my pain.
So the search began for a doctor who would listen and help, and this is when the frustration really began!
We lived in Massachusetts for 3 years and I had 4 different doctors during that time. Although my symptoms were pretty classic for both Lyme’s and Hypothyroid - fatigue, low blood pressure, dry, cracked skin, joint and muscles aches, acne, inability to lose weight, irregular periods, brain-fog, depression, slow reflexes, low body temp and Raynaud’s syndrome, constipation - none of my doctors even mentioned the possibility of either disease. Since I wasn't technically overweight, the docs just thought I was obsessed about my weight, was fatigued and didn't have regular periods because I exercised too much, and had low blood pressure because I 'was healthy'. Even in my ‘altered state’ I was in tune with my body and mind enough to know that there was something more going on - what I was feeling was not normal.
When my husband’s job moved us to Virginia, I continued my search. I was on my third doctor when I finally found a unique doctor who finally listened to me and cared. He was actually my gynecologist (and was an alternative MD), and after testing my hormone levels to try to find out why I didn’t have regular periods discovered I had a TSH of 19 and also had thyroid antibodies. I’ll never forget when he called me at work to give me the news and I just cried - not sad tears - I was so happy to find out that there was actually something wrong and it wasn’t just in my head.
Unfortunately, he put me on a natural thyroid (called Biotech) which I truly believe he thought was the best route at the time. Initially I started to feel somewhat better, but then I started to experience dizzy spells and big fluctuations in energy and brain-power. He reassured me to ‘hand in there’ and that it would take nearly 6 months before I felt better and was regulated. During that time, we relocated once again, this time to our current home of Baltimore, MD. I continued to feel very fatigued, forgetful and ‘spacey’ among other things. I was very distressed that I had to search for another doctor. It was a time in my life when I needed more energy and enthusiasm than ever - my husband and I were both starting great new jobs in a new city and were building a new house (and living in my sisters basement at the time). Here we go again.
I found a family doctor who claimed to specialize in chronic fatigue and endocrinology - perfect, so I thought. This man was without a doubt the most condescending, unhelpful doctor I had ever seen. He was appalled and disgusted that I was taking a natural thyroid - and made me feel like an idiot. He told me the only way to treat chronic fatigue was an experimental surgery to remove part of the skull! He also said that it’s probably just PMS and I needed to be on Prozac! He told me I would probably feel depressed and fatigued all my life unless I go on Prozac. I know antidepressants help lots of people, but I didn’t want to go that route - nor did I trust him. I wanted to find the solution, the root of the problem, not mask it. While I was leaving his office, I heard him on the phone with another patient, prescribing them Prozac too, like that’s the cure all.
During my continued search for a primary care (I’m actually still searching for one that’s in-network) I did find an endocrinologist who has been open-minded and caring enough to help me. The first time I saw her, she immediately took me off the Biotech (which she had never even heard of, which scared me!) and put me on Synthroid, which she thought would regulate me and prevent the big fluctuations in energy and the dizziness. She explained that the natural thyroid didn’t have steady hormone levels which was causing the extreme fluctuations. She felt very confident that the Synthroid would make me feel so much better.
Within about 2 weeks after changing medications I was crying everyday, was more foggy-brained, fatigued and depressed than ever. I would literally have to crawl up the stairs and I would spend hours on end working on things for my new job - I felt like I couldn’t think or write (which is what I was hired to do!). My family just thought I was stressed due to all the change. But I had everything in the world to be happy about - the stress excuse didn’t make sense to me. I was so afraid I would never feel good again.
I started researching on the web, and came across your site on Mining Company (thank you!) and found information on T3, among other things. I printed out what I had found and took it to my endo. She agreed (with a little convincing) to try a Cytomel/Synthroid combo. I actually think maybe that being on the natural thyroid made my system dependent on supplemental T3. Within a few months I was feeling better (but still not great). My TSH and T3 levels were testing normal (around a 1.5) - and my endo felt pretty certain that the continued fatigue, memory problems, achiness wasn’t due to my thyroid. Other symptoms (dry skin, constipation, menstrual irregularities, reflexes) had improved significantly. She was supportive, but didn’t know what else to do for me and suggested I see my primary care. I didn’t yet have a PC I liked (I had tried 2 others since the first one) so I asked my endo for a referral.
This doc still wasn’t "the one." It’s amazing how difficult it is to find a good doctor! She asked me questions about my exercise and nutrition, but didn’t listen to my answers. She turned what I said around too - she looked me over, said I was healthy and that I was fatigued because I was dieting, not nourishing my body and exercising too much. Meanwhile, I was following a registered dietitians eating plan (with supplements), had given up teaching group fitness classes, and only walked about 30 minutes 3-4 x a week for exercise!
I finally resorted to going to a doctor I found through Dr. Andrew Weil’s web site and ‘top docs’ referral program. He is a MD, but practices alternative medicine and is out of network. In fact, his office doesn’t handle insurance paperwork at all. But I figured the minor inconvenience of paperwork and some additional money was worth it at this point! I made an appointment for an initial consult, and he of course spent a good hour with me, interviewing and talking with me mostly. His focus was on my joint pain and fatigue. We only talked a little about my thyroid.
By the end of my consult, he felt pretty sure he knew what the diagnosis would be - Lyme’s Disease. I was in disbelief - there is no way I would have been to 10 doctors and never had been tested for something so simple! Sure enough - he was right. I had Lyme’s Disease and a parasite infection called Babesia (which is also transmitted from a tick).
I was treated for 6 months with antibiotics, and literally ‘felt’ the infection dying off at times. The back pain was so unbearable for a few days that I had to take muscle relaxants to sleep. But I was happy to feel that pain because I knew the medication was working and the ‘critters were dying’. My doctor said that it’s possible that since the Lyme’s Disease was left untreated for so many years that it caused an autoimmune response in my body resulting in the Hashimoto’s. There is no way to know for certain, but it sounds like a logical explanation.
Incidentally, my brother has Type 1 diabetes, which I discovered along the way is also a genetic autoimmune endocrine disorder. It’s ironic to me that every single doctor takes a medical and family history and supposedly knows that the prevalence of one autoimmune disorder increases the likelihood that other family members may too have an autoimmune disease. Yet I was never even tested. I think a family history of diabetes should be a red flag for doctors to check for thyroid disease when patients are complaining of the common ailments of depression or fatigue.
I’d love to end the story by saying I feel perfectly healthy, but the reality is that I have just learned to adapt my life around my "low energy reserves." The difference is my attitude. My lack of endurance used to frustrate, depress and embarrass me. Now that I know why, I fight it less and feel more at peace with myself. I once read that hypothyroidism and chronic fatigue syndrome often afflicts Type A perfectionist, over-achievers - and that disease of any type is your bodies way of screaming out when we don’t treat it right or listen to it. If we accept our disease, learn from it, we can actually get to a place where we’re thankful for the disease, because it makes us who we are. If we continue fighting and feeling sorry for ourselves, then finding true happiness is nearly impossible.
Hypothyroidism is a much less-dramatic disease than cancer or even diabetes, yet the lesson we learn from it can be just as meaningful. You don’t have to be dying to hear the wake-up call...Slow down and appreciate the moment, listen to your body and trust your intuition, be true and good to yourself first and know that others will benefit from your doing so, and take faith in knowing that everything happens for a reason, and that all that is meant to be will be.
Although my joint pain is totally gone and my energy, brain-power and general enthusiasm for life is significantly improved, I still have ongoing muscle fatigue, a case of never-ending thirst, brain-fog and memory problems. But I am very happy to say that I am no longer depressed! Yes, I’ve learned to modify my life a bit and since I still work in the health and fitness industry, I’m still often envious of those around me with tons of energy. But I’m determined and have set a goal to run a few races this year - so far I can run 3 miles straight, so I’m on my way.
Karen, 32, Marketing director of an athletic club and wellness center
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