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Discussion Starter · #1 ·
Hello,

I have some questions about symptoms with normal labs, hoping someone here can shed some light on my situation. I apologize in advance for the lengthy post, but I want to be sure to give as much info as I can.

Long story short, I had my son in January, 2012; diagnosed with Hashi's and Graves' in April of 2012. I had been having hyper symptoms since the birth of my son and all labs by April were hyper. The endo I was seeing prescribed 50mg of PTU two times per day, and 25mg of propranolol two times per day, I felt better for about 2 months and then started feeling so bad but the endo kept telling me my numbers were in range. August, 2013 the endo left the practice and mailed me my paper work for the new endo. As I was going through the paper work, the TSI was never positive, <1 was the result and the range was <=1.3. I called my primary who immediately took me off of the PTU, he felt that I had post partum thyroiditis. My TPO in April 2012 was only 75 (0-35) and the uptake scan the endo ordered showed a decreased uptake at 4.7% at 4 hours and 12% at 24 hours.

Fast forward to now, after 2 lousy endos, I finally found the perfect one; he takes great care of me. There is a history of thyroid cancer in my family (an uncle) and I have a few nodules that he watches, so I have an ultrasound done every 6 months and labs about every 4. I have had a biopsy on two of the nodules due to their size and appearance and they have both come back benign. He said by the look and feel of my thyroid that I do have Hashimoto's but there is no Graves' disease. I currently do not take any medication because my labs have been with in range since late 2012, I do take metoprol 12 mg per day for occasional palpitations.

A few weeks ago I saw my PCP for tingling in my hands and feet. She ordered lab work and ordered a TSH to the list of lab work. The TSH came back low at 0.03 (.35-4.01). I get the results of most lab work within hours due to having an online account with the lab. I was totally shocked, I was for sure it was going to come back hypo due to the symptoms I've been having. The tingling, super cold (Sitting in my office and I actually have on a sweater plus a coat right now), super tired, a little anxious, and I've had periods of pain in the thyroid that will extend into the clavicle. I called my endo the next day to ask if he would order and FT3 and FT4, he did and they all came back normal. I again phoned the office because I wanted to ask if he was going to order more labs before my April 20th appointment and he did. They are below:

TSH - .35 - 4.01

4/3/17 - 1.67

3/18/17 - 0.03

10/11/16 - 1.13

FT3 - 2/8 - 4/4

4/3/17 - 3.2

3/21/17 - 3.4

Not sure why it wasn't drawn on 10/11

FT4 0 .61 - 1.37

4/3/17 - .68

3/21/17 - .93

10/11/16 - 1.01

TPO - 0.0 - 18.3

4/3/17 - 736.6

10/31/13 - 73.2

3/21/12 - 75

He also ran a TRab and a TSI but I do not have the results of those back yet. Obviously something is going on with the TPO being higher than in the past and the FT4 is on the lower end, could the low FT4 be causing my symptoms?

Thank you so much for any input you can provide, and again, apologies for the long post.

Elaine
 

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Welcome to the board! Thank you for the detail of your situation.

That jump in TPO is likely the issue - the magic question - why??

TSH - .35 - 4.01

4/3/17 - 1.67

3/18/17 - 0.03

10/11/16 - 1.13

FT3 - 2/8 - 4/4

4/3/17 - 3.2

3/21/17 - 3.4

Not sure why it wasn't drawn on 10/11

FT4 0 .61 - 1.37

4/3/17 - .68

3/21/17 - .93

10/11/16 - 1.01
You are definitely falling further hypo.

I would imagine an ultrasound would be the next step as well as Thyroglobulin ( which I see they ran along with TSI) antibodies to see if the nodules have changed.

You should ignore TSH as the Free's tell the best result of thyroid hormones and since you have antibodies TSH in my opinion is useless.

Sounds like your doctor is on top of it - lucky you! Most of us have to fight for the treatments and lab's.
 

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Discussion Starter · #3 ·
Thank you so much for your reply. The final two lab results were emailed to me last night.

TSI - 1.5 (<=1.3)

TRab - <1 (0.0-1.75)

I have been reading that a positive TSI has also been seen observed in patients with other thyroid disorders, including nodular goiter, and subacute thyroiditis; has anyone else heard this? I read this on Mayo Clinics medical laboratories website.

The last ultrasound I had was in October of 2016, so I am due for one. Hoping he will schedule it before I see him in a few weeks. So happy that I found this forum, I learn so much from reading everyone's posts.
 

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I'm only aware of TSI being present with Graves. While the other disorders you mentioned may also have TSI - I would think it's due to underlying Graves Disease.

SO... The TSI explains the sudden fall in TSH but your other labs are hypo which means - you have stimulating and blocking antibodies controlling things now. Medicating will be difficult as the antibodies are acting up.

I have both Graves and Hashi's - only presented hyper but did have completely "normal" labs 1X in my diagnosis phase which extended my time in receiving a diagnosis. It was early in my disease process - As things progress, you may go from being hypo to hyper and have to be tested often to know which antibody is in control.

There is no "cure" there is possible remission but with both diseases my opinion it's best to have the thyroid entirely removed. Having nodules makes my comment more concrete. I struggled for 4.5 years on anti thyroid med's - only to be kept hypo by the Endo. The last straw was a hyper lab - nothing had changed med wise, diet wise or activity level wise other than my body going hyper. Surgeon told me my thyroid was destroyed and filled with nodules - My endo never ordered an ultrasound - thankful there was no cancer.
 
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I have been reading that a positive TSI has also been seen observed in patients with other thyroid disorders, including nodular goiter, and subacute thyroiditis; has anyone else heard this? I read this on Mayo Clinics medical laboratories website.
When you have co-occurring thyroid issues, lots of antibodies are involved. I had TPO, TSI, and Tg/TgAB. They "only" diagnosed me with Hashi's and cancer, but I would be willing to bet that there was smattering of Grave's in there too.
 

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I started with Graves (TSI was off the charts) and got that under control with PTU, then I developed Hashi's a few years later (TPOAb was high). I tried for years to stabilize until I found a good doctor, but my thyroid was so damaged from years of the back and forth that it was very hard to get control of it. I ended up having mine removed eventually.
 
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