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12 Things I have learned with my years of living with thyroid disease

At 17 years old, I was diagnosed with hypothyroidism. My body, being the odd body it is, stayed true to form, and showed all the symptoms of hyperthyroidism, none of they signs of hypo.   My diagnosis came at at time when I thought I was invincible. Hearing that I would have to monitor and take a medication for the rest of my life felt like a life sentence. Doctors told me not to worry too much, it was manageable. You take a little pill every day, get blood work done every six months, it is fine, it’s really not a big deal. I guess as far as lifetime illnesses go, they were right, it was not a big deal. Except, well they lied. It is a big deal. There was so much they did not tell me, there is so much that I have learned on this 25 year journey they left out.

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The information I am sharing is from my years of experience. Hopefully, it can help you if you are on this journey.

  1. All kinds of medications interact with your thyroid meds. Read the labels. Shortly after being diagnosed, I was doing a long distance drive. I had a cold and stopped to take some cold medicine. To be exact, Tylenol cough and cold…that was my first experience with the interaction with thyroid and over the counter medications. Initially feeling slightly off progressed into my head tingling, literally feeling the hairs grow out the top of my head and very confused, I had to pull over…my cold had suddenly become an out-of-body experience. Reading the box closer, it said in very small print, may interact with thyroid medications.  It would have been nice to have this warning prior…yeah I know you are supposed to read the labels. However, being young, and thyroid disease being no big deal…I didn’t. I learned.
  2. Blood work is more often than once every 6 months, until you get your thyroid regulated. It is usually every 6-8 weeks until it falls within the “range” . Once you are in the range, doctors will go to once every 6 months, then once a year.
  3. Just because you are in “range” does not mean you will feel good. The range is broad, and some people feel better on the bottom end of the range, some on the top. Often times, medical doctors don’t ask how you are feeling, but they check your blood work, and if you are in the range, “you are good.” This isn’t true. Find a medical provider that will work with you, and ask how your body is feeling.
  4. The range has a spectrum that affects your mood. One end can be brain fog and depression, the other end, crisp thinking but high anxiety. This can happen within the range. If you are experiencing these symptoms, it could be your thyroid.
  5. You need to familiarize yourself with what the ranges…although range differences were recommended back in 2003, (referred to as new ranges) a lot of doctors, insurance plans, and labs use the there are old ranges. The old ranges give a much wider norm, so it can look normal but still be out of range for the new ranges.  Here is a great article on ranges: The TSH Normal Range: Why is there still a controversy?
  6. Thyroid symptoms often look like mental health disorders…Bi-Polar, ADD, depression, and anxiety all have similar symptoms to inappropriately regulated thyroid disease. If you have thyroid disease, before they medicate you for one of the other issues, make sure that your thyroid is properly managed, and that they have played with the range to see if you feel better on one end of the spectrum versus the other.  Many people are misdiagnosed with these disorders, only to find out the root cause is the thyroid. If you are working with a therapist, psychologist or psychiatrist, make sure they truly understand the impact thyroid disease and management has on mental health.
  7. Thyroid affects your fertility and your ability to carry a pregnancy. I had one doctor insist that I was in the “range” so I was fine. After two years of trying to get pregnant, I insisted on an endocrine specialist…my doctor acted like I was ridiculous. ” You are in range, and this is an easy thing to manage, it isn’t your thyroid. I am not doing it.” After a conflict  with me stating “if you don’t refer me out, I will be having a discussion with the board”, he referred me to a specialist. The specialist was dismayed after my first blood test “You were so hepped up on thyroid meds, there was no way you were getting pregnant.” It took me nine months to get into an acceptable range.  She told me I was where I needed to be at the end of September,  I found out I was pregnant in December.
  8. My experience was that my OB’s were better at managing my medications than my internist. They seem to get the importance of it. After having my first child, I asked my internist to keep me in the same range. He refused. When I asked the specialist to do the same, she did. Quality of life had a huge improvement.
  9. Your thyroid medication is supposed to be taken on an empty stomach, except if you are on a natural one, like nature-throid, which does not need the stomach acid to break through the coating. That being said, sometimes, breaking your dose in half and taking half in the morning and half in the afternoon can help with the mid-day lull.
  10. Sometimes, even when you are doing everything right, you still feel like crap. A lot of doctors, don’t look at the underlying causes of thyroid disease. For many it is a thing called adrenal fatigue, which means that your adrenals are off. No matter how regulated your are, if your adrenals are off, you are going to still feel awful. Finding a doctor that is also open and willing to discuss adrenal fatigue for me was imperative to getting better.
  11. Love yourself. Give yourself permission to be tired and self care…you have an autoimmune disease, it really is a big deal…allow yourself to rest.
  12. Lastly, trust you body. You know it better than any professional. If you are not feeling right, advocate for yourself. Don’t give up. It took me going through 5 doctors before I finally found one that was willing to listen. Once I found a practitioner that was willing to work with me, my health began to change. Hang in there!

Please remember you are not alone on this journey. There are a lot of us going through the thyroid craziness.

I wish you love and healing on your journey.

Laura

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