Dear Family or Friend
I’d like to start this by explaining something about me….
For twenty years before I became a Thyroid Patient Activist, I lived with the misery of poorly-treated thyroid disease, which is a huge problem that most people don’t even realize is occurring. And I would emphatically tell you that there are very few people in my life who really knew how bad it was for me. I would go to church just like anyone else, take care of my children like anyone else, go shopping and do other important errands, visit with family or friends, hold down a job like anyone else, and even exercised when I could.
But here’s what no one saw (and may be similar to what your friend or loved one goes through):
- When I wasn’t working outside of the house, I had to take a nap nearly daily to get through the entire day with any grace.
- When I was working, I had to distract myself to keep going until time to go home…and I then collapsed.
- If I went grocery shopping, I had to go slow and be prepared to nap when I went home. (My husband did it a lot for me.)
- If I exercised, I had to lay low the rest of the day and the next day to recover.
- I had to avoid going out with friends or family for certain activities, knowing I would never keep up. (That was really hard.)
- I had to constantly cope with my low grade depression or brain fog caused by low levels of T3 to my brain.
- After doing too much, I had to deal with horrific fatigue that even a nap didn’t help, or terrible insomnia that drove me nuts.
- When you and I sat together or close by at a public event, I had to deal with numerous symptoms of being hypothyroid while smiling and trying to act normal.
- I cried a lot. I was embarrassed. I was sad. I was miserable.
Now let’s move to both me and anyone you know with thyroid disease: we as thyroid patients have to deal with doctors who have terrible knowledge on how to both diagnose or treat hypothyroidism.
Yup, going to medical school is no guarantee of good training. When it comes to thyroid disease, most of them are clueless. I went to at least 20-30 doctors over the years, trying…trying…to figure out what was wrong with me!
In other words, our doctors…
- use the wrong lab tests (like the TSH, which can imply we are normal when we definitely aren’t).
- put us on the worst thyroid medication ever created because that’s how they were trained (T4-only meds like Synthroid) which is inadequate and leaves us with continuing hypothyroid symptoms, sooner or later.
- look at man-made “normal” ranges as if they are from God Almighty, and we MUST be “normal” if we fall in those ridiculous parameters (but we’re not.)
- constantly tell us to eat less and exercise more (even though our continued hypothyroidism is the real problem, which lowers our metabolism, slows digestion, promote excess fat, besides causing fatigue if we try to exercise.)
- try to put us on a slew of other prescription medications, which are only band-aiding our continued hypothyroid symptoms, and which have side-effects of their own (antidepressants, statins, blood pressure meds, pain meds, to name a few.)
- imply we have separate problems unrelated to our thyroid disease, which in reality ARE related to our hypothyroid state (Chronic Fatigue Syndrome, Fibromyalgia, depression, anxiety, high cholesterol, high blood pressure, low iron, low B12, hair loss…on and on.)
Bottom line, though I or your friend or loved one may “look” normal…or though you may think I or your friend or loved one is a hypochondriac, or lazy, or a complainer, or eat too much, or am in need of serious help, or are strange….there’s a LOT more going on than you realize.
Hypothyroidism is rampant all over the world! Even Hashimoto’s, the autoimmune version of thyroid disease, is everywhere! And with thyroid disease comes low levels of thyroid hormones, especially one called T3.
T3 plays a role in the health of our brain, our emotions, our adrenals, our digestion, our liver, our kidneys, our heart. All organs need the thyroid hormone T3 to function correctly. Without enough T3, we organically get depression, brain fog, adrenal fatigue, low levels of Vit. D or iron or B12, liver stress, poor kidney function, heart-related problems….on and on, sooner or later. We lose hair. We gain weight. We have to take naps. We become depressed. We have to keep going to doctor after doctor because most are NOT doing a good job, and we end up desperate to find one who knows his or her stuff….which is rare. And we go broke doing so.
And all the above is why the Stop the Thyroid Madness website, and especially the book, exists. Patients who have remained sick have had to grab the bull by the horns and learn from each other, because our doctors fail us over and over and over, and no one understands us. It’s not always an easy path in our journey to get well again, and here’s what it can look like: the Road to Recovery.
Thank you for being my friend or loved one, and I hope this helps you understand what’s going on with me, your friend or loved one, and the journey we have to take to live again.
***Have a story to tell of friends or loved ones not understanding what you are going through?? Write up your story in a few paragraphs (DON’T MAKE IT LONG) and send it to Janie. She’ll post it here.