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Thyroid update--yay!

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#1 BY196


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Posted 23 April 2012 - 09:21 AM

I wanted to post my initial experience with thyroid hormone in case it's helpful to anyone. I posted a couple of weeks ago about my consult with an endocrinologist who trained at Sloan Kettering and had experience with patients on TKI therapy. He ordered labs and an ultrasound of my thyroid. (I was dx in Jan. 2011 and switched from Gleevec to Sprycel in Feb. 2012 in part because I seemed to be having severe side effects in the form of fatigue and myalgia.)

The labs came back with everything in normal range. TSH was 3.05; it had been 4.6 in the late summer and 1.5 in November. The T4 was within normal range but at the very lower end (reference range .8-1.8 and mine was .9). The T3 was on the low side as well, though not as low as T4. I had no antibodies indicating Hashimoto's and the ultrasound was normal.

He recommended I start on 50 mcg of Synthroid. At my visit, he had told me that sometimes patients had normal labs but seemed to have developed some kind of peripheral resistance impeding the activity of thyroid hormone in the body. At first I was a little nervous, given that the labs were normal. But my mom, who is on Synthroid because she had her thyroid removed due to cancer, emphasized that Synthroid is very safe, the dose he had proposed was low, and if I felt bad I could always stop.

I started on Friday and within a day or two I am feeling so much better. My muscle pain and exercise intolerance is about 80% resolved (what's left is probably genuine Sprycel side effects); I actually worked out on Saturday for the first time in months. I am so much less tired and lightheaded. Shortness of breath (I guess the doctors call it "air hunger" not true SOB) is almost gone. My sleep is better, and I am not in a fog whenever I've been up and around for any length of time.

I feel like I have my life back again. I know it's early and the benefits could wane, but it's great not to be dragging myself through the activities of daily living.

Thanks for listening!


#2 Quincypp


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Posted 23 April 2012 - 09:46 AM

First let me state i have not been dx with any LLS type disease (still waiting for some kind of dx) but I have had thryoid for over 20 years (had Graves' disease) i have been on synthroid for over 20 years after they killed off my thryoid with radio active iodine. I am always told it is the safetest pill to have to take cause its very close to what our body produces naturally. That is a very low dose - I am on 225.

Only thing I can say is thryoid isn't always stable - your dosage can fluxuate - and it depends on stress - not all dr agree but it does!

Make sure you take it on an empty stomach and don't take any other pills around the same time - it can interfere with your asorbtion. It usually takes about 6 weeks to get the full effects of thryoid changes so that is great news you are already feeling better!


#3 Happycat


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Posted 23 April 2012 - 08:44 PM

Beth, thanks for posting. If I can't get things under control on my own, I might go see an endocrinologist, too!  I don't get the fatigue you had, so I'm not sure what to think just yet.  It could simply be that I'm too busy running kids around to focus on me. Heaven knows I don't get my time to exercise anymore.

Anyway, great to hear you're feeling better. I will echo Quincy that your hormone needs may change over time, but you probably know that from your mom.  My mom has had to have hers adjusted, both up and down, over the years.


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