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Thyroid Results are Weird What Can I Do?

Thyroid was destroyed by radioactive Iodine 30 years ago. Been on NDT for years after finding it worked better than synthroid.

I have had a sudden worrying change and I am scrambling for answers. Starting in December I noticed that I was more tired than normal and I felt 'foggy' at times but was busy with some big events so I didn't think much of it. However it continued into January and more signs of my thyroid levels being too under-active and so, after some pushing for my doctor, got a full range of tests done.

Sep, 2015 (For comparison)
FREE T4, SERUM - Mine: 1.1 ng/dL, Lab: 0.6-1.2 ng/dL

Late Jan, 2016
TSH - Mine: 0.01 mIU/L, Lab: 0.46-5.56 mIU/L
T3, TOTAL - Mine: 337 ng/dL, Lab: 87 - 178 ng/dL
FREE T4, SERUM - Mine: 0.9 ng/dL, Lab: 0.6-1.2 ng/dL

Feb 2016
FREE T3 - Mine:1.9 pg/mL, Lab: 2.4 - 4.2 pg/mL

(The TSH, while almost non-existent, has been like that since my thyroid was removed. That is 'normal' for me)

With wonderful timing, my GP has been out all of January and just recently returned, putting my appointment out till nearly the end of the month. I am trying to get an emergency appointment with a specialist, even though I have had poor luck with them in the past, as I feel myself deteriorating day by day.  For about 4 years now I have been on the same medication, ERFA 30mg 3x daily, and have not had any other major medical complications in the past year. The only information I have found in the same ballpark as what my numbers show (especially with the T3) is that I am experiencing 'pooling'. Symptoms, more exhaustion than usual, occasionally difficulty talking, vision disturbances started yesterday, more cold than usual, highly irritable, tongue scalloping and swelling, dry skin and hair along with brittle nails, and oddly enough insomnia.  

This leads me to wonder what I can do? Even with a sky high T3 I feel incredibly under-active and I have never had results like this before. Can anyone recommend things for me to research or possible avenues of investigation that I could bring up with my GP or in case I can find a specialist who will talk with me? I'm really slowing down and I'm very worried that this is progressive.
3 Responses
Avatar universal
Why do you think your T3 is sky high?  Looking at your latest results, your Free T3 is terribly low, unless you posted  wrong numbers.  

After having RAI, that dose does not seem enough.  The 90 mg only contains about 57 mcg of T4 and 13.5 mcg of T3 which is not typical of a full daily replacement amount.
Thank you for responding. The numbers are correct. I do not know why the T3 is so high. Right now I feel like I'm dying. I've had several incidents where my thyroid got so low I received massive doses in the hospital to get it back up. Currently all the doctors are saying I'm hyper and want me to drop my dosage even though I have no hyper symptoms. My heart rate is normal for me, 68, and my blood pressure is 100/60, also normal for me. I can't find a doctor who won't look at anything but the TSH. They all say the FT3/T3 are useless.
I live in Beaverton Oregon (Portland)
Avatar universal
You need a good thyroid doctor now.  If you will tell us location perhaps we can suggest one that has been recommended by other hypo patients.
I live in Beaverton Oregon (Portland)
Avatar universal
Sent you a PM with info.
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