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Thyroid Disease is Finally Confirmed

Posted Dec 17 2013 4:48pm
It has taken me a long time to reach this point. I don't really know how I feel about it all . . . just yet.

The additional tests that the first nurse practitioner ran came back quite abnormal. But I didn't hear from her until I chased her down a couple of weeks later. She was very confused and was trying to figure it out on her own.

In the meantime, everything in my body was racing. My metabolism was high, but the body was in starvation mode, so I don't understand her personal need to figure it all out. Since Cigna's insurance chart said our local Endocrinology clinic was not set up to take Cigna patients until January, I just wanted her to run the blood work for me, so I could decide if it was worth it to pay for the doctor visit myself, or if I should wait until our new insurance became effective in January. Hubby's company is dumping Cigna for a local health insurance company instead.
When I didn't hear back, I called the clinic and asked for a copy of my results, so I could set up an appointment with a Specialist myself. Surprisingly, the nurse practitioner finally called me back that very day and talked to me for about an hour.

First Test Results

My Hashimoto's Disease antibodies were only 1.3, which meant I didn't have Hashimoto's Disease. I thought it odd that it was the only antibody test she ran, especially since my labs were pointing to hyperthyroidism, but that's just the way it goes sometimes. Most doctors don't really know very much about thyroid disease, which is why I wanted to go to a Specialist instead of a nurse practitioner.
My Free T3 was high. It was above lab range. I think it was something like 5.6 with the top of the range being 4.2 or so. Coupled with the TSH at less than .10, that meant some type of hyperthyroidism. But the nurse wasn't focused on me being hyper. The only questions she asked me before the tests were about hypothyroid symptoms.
Since I've struggled with being cold, extremely exhausted, insomnia, dry skin, and tons of hair loss for years now that's what I knew signaled thyroid issues. Plus, hypothyroid is not unheard of with a low-carb diet because it can interfere with T4 to T3 conversion in some people. The truth was, I didn't know what hyperthyroid symptoms even were.
Pituitary hormones did show some irregularities, but those could be attributed to menopause. What disturbed her the most was my hypothyroid symptoms coupled with the hyperthyroid labs. If she'd only told me what hyperthyroid symptoms were, I could have saved both of us a lot of time.
The only symptoms I recognized was a problem with having an adrenaline rush in the mornings and afternoons, and sometimes at night, but I'd been doing that for a very long time. I had always thought it was just my wonky blood sugar. But apparently, it wasn't.

My Visit to an Endocrinologist

I was feeling so badly, that I was willing to pay for the visit to a Specialist myself, but upon calling up the Endocrinology clinic in our area, they informed me that they take both Cigna and the new insurance we are moving to in January. That was extremely helpful, because I really needed to see someone soon.
My visit to an Endocrinologist appeared to go quite smoothly. I had no clue that she was not a doctor. She appeared to be well informed about hyperthyroidism and Grave's Disease. I handed her a list of all of my symptoms (I'd looked up hyperthyroidism online) and a history of my endocrine problems over the years, which she actually took the time to read.
She asked me additional questions, and she physically checked my thyroid to see if it was enlarged. She said she could feel something, so she wanted to do a thyroid scan (sonogram), as well as have my blood work done over again. I wasn't surprised at the additional blood work, since my previous tests were broken up: TSH and Free T4 on one day, and Free T3 two weeks later. Plus, I hadn't been tested for Grave's Disease yet.
The nurse practitioner showed me a plaque with a model of a normal thyroid, what a thyroid with Grave's Disease looked like, and a list of symptoms. I had every single symptom on the list except for infertility, which wasn't applicable any more. She was so sure that's what I had, that she ignored all of the symptoms that didn't fit into that scenario.
Oddly enough, although I'd been recommended to the clinic due to a suppressed TSH and high Free T3, this nurse wanted to look at my Total T3, as well as my TSH and Free T4. That was quite odd, because Total thyroid hormone and Free thyroid hormone tests do not measure the same thing.
My Free T4 and Total T3 came back normal. That wasn't surprising to me. My Free T4 was already normal during my previous test. According to the Cleveland Clinic thyroid booklet I downloaded after-the-fact, a normal Total T3 is very common with hyperthyroidism because those with hyperthyroidism are malnourished.
If you don't have enough protein in the blood, because your body is digesting your muscles, your Total T3 test won't be accurate because there won't be enough protein to bind to. That can make your total thyroid hormones look normal, even though the Free T3 is high.
What was a surprise was that the Grave's Disease antibodies came back normal as well.

Thyroid Scan Results

After speaking to the nurse practitioner's nurse about my results, I was very frustrated. According to my blood tests, the initial diagnosis was only thyroiditis, which is inflammation of the thyroid gland. That is generally caused by a virus or after pregnancy, neither of which was applicable to me. According to the nurse practitioner, my problem was going to clear up on its own.
I've been sick for years!
Whatever was going on with me, it was not going to clear up on its own!
But the nurse practitioner was willing to put me on a maintenance dose of anti-thyroid medication if I wanted it. Of course I wanted it. I was totally flabbergasted. Hyperthyroidism seriously raises your chances of having a heart attack! And currently, I cannot hold still. I'm shaking like crazy!
I asked about my scheduled thyroid scan, if they still wanted me to have it, but the nurse practitioner's nurse didn't know anything about it. After thinking it over for a few minutes, I decided to keep the appointment. Especially since the nurse practitioner had not run the correct test. A scan would show if there was any physical abnormalities with the thyroid.
Which it did!
What I have is Toxic Multi-Nodular Goiter.
My thyroid gland is enlarged, hence the term "goiter." I have a 12 mm nodule on the right hand side of my thyroid, a 9 mm nodule on the left, and a multitude of small nodules scattered throughout the organ. Anything larger than 2.5 cm will cause hyperthyroidism. So it's no wonder that I have all of the symptoms of Grave's Disease.

So Where Do We Go From Here?

The nurse practitioner showed my results to the doctor she works under, who recommended I have an iodine uptake test to check out my thyroid function. That will reveal if one or both of the two large nodules are working independently of the thyroid gland. It will also show how much damage my thyroid has sustained from all of those nodules.

The test is scheduled for January 8th. I have to stop the anti-thyroid meds by Christmas Eve in order for the iodine test to be accurate. Unlike the meds I'm currently taking, the iodine test "can" do some damage to the thyroid, but at this point, there is no getting around that. Because once that test is done, they are probably going to do a biopsy for cancer.
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