So many customers come in and ask me about my thyroid and if I have thyroid disease as well as Celiac. Well, it should not be a surprise that Thyroid Problems are often missed by doctors. Often for a Celiac, it is a double whammy…because often the Celiac and Hashimoto’s Thyroiditis go hand in hand and both are often missed…leaving a person miserably ill for a long time! If you are a Celiac and carry gene HLA DQ2, and have a thyroid issue, you most likely have Hashimoto’s Disease (autoimmune disease; under-active thyroid caused by the immune system attacking the thyroid).
Thyroid panels are not part of a normal CBC that are run by doctors. Often, if a doctor runs a thyroid test, they don’t always run the tests that determine Hashimoto’s Disease; autoimmune thyroid disease.
I know first hand; I had both of the above issues and went un-diagnosed for far too long. I was complaining of symptoms for about five years but my general practitioner never tested me. Finally, after experiencing infertility and miscarriages, the reproductive endocrinologist ran the tests and it still took me 8 weeks to get into the specialist he referred me to. I felt like I was slowly dying; and I was because the thyroid affects your entire system!
One of my favorite on-line docs is Doctor Amy Myers and she is all about the Thyroid. She recently wrote an article about symptoms, what lab tests must be run and the average normal ranges as well as the need for the doctor to listen to the patient and how they are feeling. Boy did it ring true for me. Below is my story about my diagnosis and how long it took to get my thyroid up and running again and a link to Dr Myer’s article. I hope this is helpful to you or a loved one.
I got lucky, after going un-diagnosed for about 5 years, I was referred to a wonderful endocrinologist in Bethesda, MD, who listened to me after I was diagnosed. I sat across from him on Christmas Eve 1998 barely functioning and told him that I felt like I was slowly dying. He said that he was stunned that I was even moving; my levels were so bad. He said, that his instinct was to put me right in the hospital, but the treatment will still be the same, a little thyroid hormone at a time and it would take many months to get me up and level. He gave me the choice, admit me to the hospital or go home. I had my entire family coming in town from New England and did not want to be in the hospital. He told me that I needed to let my family members know that they should be tested for Hashimoto’s Disease and sent me home with the lowest dose of thyroid hormone; .25 for six weeks. (family members got checked and 1 has Hashimoto’s, two have under-active thyroid)
Leaving his office, I forgot to get my parking garage ticket validated and had no money to pay. I hurried back to the doctor’s office, but they were already gone. This was way before you could pay with a credit card. I had to beg the attendant to let me go and promised I would come back with the money. I made it home; completely exhausted and my father braved the Christmas Eve traffic and went back to Bethesda from Brookeville to pay for my parking. It was only 14 miles but a 40 minute trip each way, on a good day.
It took over a year with testing every six weeks to get my thyroid levels up to normal. The doctor would say “the numbers looks normal, but how do you feel?” and I said..”I can only stay awake and functioning until 11am”. He increased the dose, warned me about symptoms of too much thyroid hormone, scheduled me for blood work and follow up in 6 weeks. I went back and he said “everything looks normal..but how are you feeling?” I said. “the increased dose helped, now I can stay functioning until 1pm”. He said ok, “we will increase it again!” I got the warning again about symptoms of too much thyroid hormone and was on my way. Again, six weeks later, I was back for my check up and he said, “Your levels look good, how are you feeling?” I said; “great, now I can stay up until 4pm!” This went on until I could stay awake and functioning until 11pm.
My final dose was .125. (the generic brand, Levothyroxine, does not contain milk or gluten; had to investigate and figure that out on my own after getting very ill while taking Synthroid). Finally, I could function all day and into the night and finally; my hair stopped falling out, my skin stopped cracking and peeling off me, the swelling in my feet went away and my memory got a lot better! I began to lose the weight that I had put on without any explanation.
I am so glad that my Endocrinologist, Dr. Robert Vigersky, listened to how I was feeling..not just the numbers! Unfortunately for me, he left private practice and went back to Walter Reed. The patients at Walter Reed are lucky to have Dr Robert Vigersky as the head of the Diabetes Institute. He practices what Dr Amy Myers says; “you have to listen to the patient, not just the numbers”. Please advocate for yourself..and if your doctor does not listen to you, find one who does, I had almost all of the symptoms below.
10 Signs of an Underactive Thyroid:
1. Fatigue after sleeping 8 to 10 hours a night or needing to take a nap daily
2. Weight gain or the inability to lose weight
3. Mood issues such as mood swings, anxiety, or depression
4. Hormone imbalances such as PMS, irregular periods, infertility, and low sex drive
5. Muscle pain, joint pain, carpal tunnel syndrome, or tendonitis
6. Cold hands and feet, feeling cold when others are not, or having a body temperature consistently below 98.5
7. Dry or cracking skin, brittle nails and excessive hair loss
9. Mind issues such as brain fog, poor concentration, or poor memory
10. Neck swelling, snoring, or hoarse voice
To learn more about normal levels, tests that need to be run in order to diagnose Thyroid Disorders and Hashimoto’s Disease, Adrenal Glands, etc; Click Here for More from Dr Amy Myers