Med Changes

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Med Changes

by Swifty on Thu Jan 09, 2020 01:03 AM

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Hello,
I received my second round of lab results after a TT November 5. Papillary, no lymph node involvement, clean margins, all in all a successful surgery they say.
TSH: 0.05 uIU/mL 0.34 - 3.00 uIU/mL
T4: 1.4 0.6 - 1.6 ng/dL
Thyroglobulin Antibody, S: 2.5 IU/mL <4.0 ng/dL
I think they messed up and didn't order the Thyroglobulin test. I heard from the Surgeon through the online portal and based on these tests they said not to worry about the antibodies because they are low. I have been feeling pretty good overall but they are lowering my Synthroid from 100 mcg to 88 mcg.
I wrote back and am waiting to hear why the change but wondered if anyone knows why they would do this? I thought these numbers looked good??

RE: Med Changes

by ToddlerFather on Thu Jan 09, 2020 04:05 AM

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On Jan 09, 2020 1:03 AM Swifty wrote:

Hello,
I received my second round of lab results after a TT November 5. Papillary, no lymph node involvement, clean margins, all in all a successful surgery they say.
TSH: 0.05 uIU/mL 0.34 - 3.00 uIU/mL
T4: 1.4 0.6 - 1.6 ng/dL
Thyroglobulin Antibody, S: 2.5 IU/mL <4.0 ng/dL
I think they messed up and didn't order the Thyroglobulin test. I heard from the Surgeon through the online portal and based on these tests they said not to worry about the antibodies because they are low. I have been feeling pretty good overall but they are lowering my Synthroid from 100 mcg to 88 mcg.
I wrote back and am waiting to hear why the change but wondered if anyone knows why they would do this? I thought these numbers looked good??

A possible reason to lower the T4 intake is that your TSH is almost supressed. So, one thing to know is whether your TSH should be supressed or not... in my case, TSH needs to be supressed, so any deviation from that and my T4 intake has to change. I recently increased from 188 to 200 mcg to keep my TSH supressed. 

And yes, they messed up by not measuring Thyroglobulin. It's a key tumor marker for those that went thru TT. But sometimes it takes time for the lab to process, perhaps it's still on its way ? 

RE: Med Changes

by Swifty on Thu Jan 09, 2020 11:45 AM

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Thanks Toddler Father! Nice to hear from you again and I hope you are doing OK. I was the "watch and wait woman". That didn't last. I am certain they didn't do the test. I had the orders in hand and there was a duplicate TGaB. I called the office and questioned it and was told to just do the three. I am also certain that person didn't check with the Doc. I had at least one small node w/Papillary, encapsulated with no lymph node involvement (from all they took and tested while I was on the table so he stopped at some point)  and clean margins. They found a much smaller bit of cancer at final pathology on the interior of the gland that was a follicuar variant. The gland was severely damaged from Hashi's also. I was told to get new labs in a month and include the Thyroglobulin.  So that I understand, the reduction will increase my TSH? Am I correct that a reason to supress would be for metastases? Or genetic marker? I had no genetic testing.
Thank you for staying here to help people!!

RE: Med Changes

by ToddlerFather on Fri Jan 10, 2020 10:36 PM

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Yes, the reduction of T4 intake makes the pituatary gland produce more TSH, trying to compensate. 

The reason for supression was the detectable thyroglobulin. At that point it wasn't known that the tumor metastasized, but it was known there were residual cells, somewhere. So the management procedure was to increase T4 intake to supress TSH, and that proved to be right when the metastases were discovered. 

I've only had genetic testing years after the surgery, using the tumor from the surgery. That's why I always suggest to keep informed of where it is stored and for how long it is supposed to be in good condition, so you might get it tested with Foundation One or similar if things go south. 

RE: Med Changes

by Swifty on Sat Jan 11, 2020 12:09 AM

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Great info. I should contact the surgeon to find out where my gland is. I read many have the testing. Picked up the new meds today so time will tell how I feel and what the new labs show. I need to find am endo closer to home to manage my case as the trips to the city are almost 5  hours each way. My sister is halfway in between so that is a huge help.
Yes it is a good thing you were supressed early on as it turns out. Glad for that much.

RE: Med Changes

by ToddlerFather on Sat Jan 11, 2020 03:23 AM

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While I like that I had genetic testing, I don't think that there is a need for everyone to do it. Being able to do it if it becomes clear that there is still something, like when Tg levels are still detectable, is a good middle ground IMHO. 

RE: Med Changes

by butterfly501 on Sat Jan 11, 2020 04:12 AM

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On Jan 09, 2020 1:03 AM Swifty wrote:

Hello,
I received my second round of lab results after a TT November 5. Papillary, no lymph node involvement, clean margins, all in all a successful surgery they say.
TSH: 0.05 uIU/mL 0.34 - 3.00 uIU/mL
T4: 1.4 0.6 - 1.6 ng/dL
Thyroglobulin Antibody, S: 2.5 IU/mL <4.0 ng/dL
I think they messed up and didn't order the Thyroglobulin test. I heard from the Surgeon through the online portal and based on these tests they said not to worry about the antibodies because they are low. I have been feeling pretty good overall but they are lowering my Synthroid from 100 mcg to 88 mcg.
I wrote back and am waiting to hear why the change but wondered if anyone knows why they would do this? I thought these numbers looked good??

Because your TSH is too low.  ATA professional guidelines call for TSH lowest limit to be 0.1.

RE: Med Changes

by Swifty on Sat Jan 11, 2020 04:16 PM

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Thank you. BTW you were right last year when you asked me basically "WTH" are you waiting for. when I was all about the active surveillance. Thankfully I stayed on top of my follow-ups and reality hit before it was too late. I was in denial. I don't know your story but I am grateful that you stick around here and help people.

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