ENDO says - part 7

I had an ENDO appt this morning, so he could answer some of my questions. 

My first question was about my mystery tissue: My ENT and ENDO both agree to wait and see what my mystery tissue does. If it is scar tissue, it could go away or it could still be healing from the two surgeries. If it is thyroid tissue, the RAI therapy could still be working. So, as much as I would prefer to find out what it is now, both of my docs don't want to jump into anything too quickly and give me any unnecessary procedures. As my ENDO put it he, he didn't want to 'radiate or surgerate' it. Are those even real words?!? So the plan is to keep an eye on it. He ordered another ultrasound in six months, so my next follow up ultrasound is in July, plus a follow up appt.

The one year WBS ('from head to toe'), will be done with Thyrogen (two shots on consecutive days) so I don't have to go off my meds. He wants a stimulated Tg reading, so the day I get my 5 mCi pill, I also need to have my blood drawn. I think the WBS follows the next day. He said there shouldn't be as many restrictions, for isolation, as there were with my ablation therapy dose last year, but I should check with the Nuc Med dept. Cool. He also said we could schedule my WBS around my life, so I asked if it could be in June instead of May.

My super suppressed TSH: He said that my thyroid levels are the inverse of my TSH level, so a very low TSH means very high thyroid levels. Still not really sure what he means by thyroid levels - is this the amount of T4 and T3 in my blood? He said most patients feel better when they are very suppressed and it is good to be there at least for the first year. But I said shouldn't it be more in the .5 to .1 range? He said he would be fine with that.

The results from my blood draw on Monday: TSH = .01, FT4 = 1.7
So my FT4 is still above range, lower than last December, but still .2 above the top of the range. Any ideas why I my FT4 isn't going down? No.

My thyroid brain fog: He said it is a good idea to add Cytomel (T3), to my Levoxyl (T4) dosage. He said T3 is very potent, so he would decrease my T4 down to 88mcg, from 125mcg, and add 12.5mcg of T3, which is half of what I was taking post completion thyroidectomy. Did he say half of a 25mcg pill twice a day, or just half a pill each day?!? We may have to tweak it a bit, so he only prescribed a 30-day supply. My next blood draw, to see how my levels are with the new prescription, is in two months, so in April, the week before my next ENDO appt. I now remember that the 25mcg dose after my second surgery did give me headaches, and if I have to take two doses each day, I wonder how it will affect my eating schedule. Will have to wait and see what my prescription says.

My misc. test results: He referred to the latest ultrasound, from last month. He said sometimes the ultrasounds pick up lymph nodes, other things in the thyroid bed. There were more identified this time around, but they were all unremarkable. He said not to worry about it. Well, I had originally asked about something I saw on my RAI/WBS (lymphadenopathy) and on the first ultrasound (two lymph nodes on the left, one on the right side of my neck) results, but I guess this is Ok, especially since nothing was identified as being 'not benign'. 

Overall, I felt better with his answers to my questions. Was not sure what he'd say about adding Cytomel for my brain fog, so I'm glad he's adding it to my meds. I can live with the 'wait and see' approach on my mystery tissue, unless my second opinion ENDO has a different opinion. And, I at least know for sure that I don't have anything to worry about for the next couple of months. Yay!