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Old 05-04-2013, 04:20 AM   #1
Junior Member
Join Date: May 2013
Posts: 14
verycomplicated HB User
Question Am I the Only One With Unsuppressed TSH?

I had a total thyroidectomy & 12 lymph nodes removed 4/2012. 4 lymph nodes were malignant & primary nodule was 2.6cm at age 53, so I was diagnosed with stage 4 papillary carcinoma, follicular variant.

Here's the weird T4 was running 2.3 and is now 1.8 after going from 150mcg to 137mcg in the past 2 months, BUT my TSH has never suppressed close to zero. I think the lowest it got was .35; the last value was .8 and it is now 1.36 I was up at 175mcg levothyroxine previously & my last thyroglobulin went up a little, but my doctor said it was in relation to the T4 or TSH value being higher.
At my 6 month ultrasound, a 3cm lymph node was biopsied & they did a thyroglobulin wash that came out ok, but the lymph node is still enlarged on my ultrasound last month. Being hyperthyroid, made me feel hypothyroid, like a block of cement and I could not function whatsoever. I feel a little difference now that I'm on 137 mcg, but the real concern is that my TSH won't suppress and my doctor reached out to various thyroid specialists and none of them have any answers and do not have any patients in this predicament. I know I'm concerned, but when your doctor is really concerned, then it's really scarey. The only possibility the other specialists came up with was if someone stopped taking thyroid hormone and then doubled up on it, this could possibly happen. I have never missed a dose and would be afraid to ever double anything and I'm very diligent about all my medications and take them exactly as I'm supposed to. All I could do is cry because I'm doing everything I'm supposed to. I always seem to be the complicated patient who reacts the wrong way to things or is the exception to the rule, but the cancer issue is a little daunting. Has anyone heard of this happening or does anyone have any feedback?

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