In the 1960's-70's, I grew up in the toxic crosshairs of a paper mill, steel mill and “secret” uranium processing plant and beside farm fields that were fertilized and pesticide-d right next to my open window. As a child I was sensitive to smells, soaps, metals, medicines and foods, which I later learned is called Multiple Chemical Sensitivity. Everyone in my family has the "nose of a bloodhound." That is both a gift and curse.
I had surgery for endometriosis at 16. Pain was a constant companion through my 20’s. In my late 20s I was diagnosed with IBS and nonspecific myalgias following a boating accident that wrenched my neck. I was sent to rheumatologists and hematologists and finally a psychologist. She assured me the problem was not in my head.
The boating accident was the turning point where my quality of life declined significantly. Every four weeks I’d turn into Quasimodo, take pain meds and muscle relaxers. I never could tolerate narcotic pain meds, so finding something to take was a challenge. I was unable to stand up straight for a few days at a time. I had lower back surgery at 29. The neck problems continued. I often felt tired, foggy and achy. My muscles cramped and felt inflamed after exercise. I suffered orthostatic hypotension. My cardiac capacity declined. I couldn’t hold a pencil and had to give up paintin g because of hand cramps. The doc told me buy bigger pencils. No one tested my thyroid.
I managed to work and raise a family, but every day was a challenge. I started my “doctoral thesis” worth of research on Fibromyalgia since none of my docs seemed to know what to do about it except hand me pain medication which I didn't want. I collected pieces of the puzzle. Cervical spine surgery in 2001 after falling off a ladder didn’t fix the neck issues. In June 2007 my hips became so painful I couldn't walk half a block. I was offered more pain meds which I declined. Then my vision blurred. I was told I was over 40 and needed bifocals. In Feb of 2008, my heart rate went up to 160 bpm resting after a root canal. I waited for the strange reaction to pass. It didn’t.
I gained 30 lb, lost a lot of my hair and developed tremors. I couldn’t breathe. I couldn’t see. I was eventually given a diagnosis of Graves Disease (an autoimmune thyroid disease). Basically my body had gone into hyperdrive and was running on empty. They put me on Methimazole (to slow my metabolism down) in June 2008. I slept for 4 1/2 months, waking up long enough to eat and go to the bathroom. My cats loved having another sleeping lump to lie on. They were the only ones. My husband is a pathologist. While we were discussing treatment options, he had two specimens cross his microscope of thyroids that had been radiated, grew cancer later, and had to be removed anyway. We decided, since I had precancerous nodules and had already fought off cervical cancer, to have the thyroid removed in Oct 2008.
After the surgery, I woke up in level 9 pain and couldn’t raise my arms. I lost my short term memory and couldn't concentrate. I had no drive. I either slept too much (Synthroid .100) or not at all (Synthroid .125). My tongue swelled and cracked. I was on pain meds, muscle relaxers, heart medication, antidepressants, one pill to wake up, one pill to go to sleep, one pill for nausea. It was insane. One doc recommended the date rape drug to treat the level 9 pain because nothing else worked. I didn’t go back to him. I researched further and found that some people can't synthesize Synthroid. I asked for Armour. The endocrinologist said "No." It was too difficult to titrate. Bottom line, they don't want to see patients every month. The insurance won't cover it.
I did more research and found out about thyroid resistance. Too much T4 and my body made reverse T3 to counter it. Some people can’t convert T4. Some have problems on the uptake end. I found Dr. John C. Lowe’s research on fibromyalgia when I began researching Cytomel/synthetic T3. When my endocrinologist finally agreed to the Cytomel in April 2010, it was like a magic wand had been waved over my body. I didn’t need any of the other medications anymore, not even for my spine. My memory, cognition and ambition all came back on line. My brain cranked like a well -oiled machine. My sleep cycle and appetite regulated. My mood stabilized. My pain disappeared within a few days – the level
9 arm pain, hip pain, the myalgias and muscle cramps. I can do things I haven’t been able to do since I was in my 20s. I wake up every morning energized and ready to take on the world. I started off exercising in a ch air. I am slowly building muscles and can do squats and lunges and lift light weights.
I don't let the TSH/Synthroid rubric rule my life. My TSH stays as close to 0 as I can get it. That is the number that works for me even though it is considered “low.” I take 0.112 of Synthroid. I take 5 mcg of Cytomel. If my heart rate rises to 100 and my tongue swells, I back off the Cytomel for a day. It’s a balancing act. I still occasionally wake up feeling like Quasimodo but it only takes a day or so for the 6 herniated disks to behave again without pain medication.
What I've learned after 30 years of living as a medical experiment is this: you have to take your health into your own hands. You have the right to ask questions and demand answers. You have the right to research on your own. If your medication is not working or improving your quality of life, you have the right to ask for something else or have the amounts adjusted. You have the right to say "No." Drugs are tested on 250 lb males. Not all patients are 250 lb males. Doctors are trained to follow certain rubrics. What you need may not fit into their rubric. You have the right to fight for what you need. Insurance probably won't pay for it.
The toxins in our food, water and environment are damaging metabolism and thyroid tissue in ways medicine has not yet begun to investigate. The thyroid affects everything: memory, mood, cognition, sleep, ambition, weight, insulin levels, neurotransmitter function, muscles and heart function. When the metabolic system is knocked off track, it can cause a cascade of symptoms that modern medicine thinks antidepressants will cure. The only thing antidepressants did for me was make me not care if I took a shower or brushed my hair. Not all weight issues are due to overeating or laziness. Not all mental issues are related to depression. Some are related to metabolic imbalances. Your body must covert T4 or synthetic T4 (synthroid) to T3 to utilize it. Some people need their T3 augmented or administered directly. T3 is the real brain that controls your metabolism. Without it, your body and mind can't do anything optimally. No one taught me that in Kindergarten.
In closing, if your body is not utilizing Synthroid well, ask for a trial of T3/Cytomel. If someone you know or love has fibromyalgia, check out Dr. Lowe (www.drlowe.com). His research, which explains fibromylagia is, and always has been, a metabolic disease, gave me my life back. It might help you or someone you love too.
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