My primary care doc, Giove, made me an appt with an endocrinologist. My appt with Dr Alele is not until July 17, so he wants to start the testing he knows will be necessary to get things moving along.
Sent for an ultrasound. At this point I was extremely anxious, reading way too much Internet. I was practically an expert! So, I made it through the visit alone. Of course the little girl would not give me any indication what she was finding. Once the radiologist read her report, The determination was not normal... well... that's not quite what I was expecting.... I really expected a little scare to find out all is well. BUT-
Ultrasound indicated one solid nodule in right lobe 1.3x1.5cm, and one exophytic solid nodule 1cm with cystic components in left lobe. Said thyroid enlarged and exceeding 2 cm and heterogeneous echo pattern. OMG I HAVE CANCER?!?!?!?! Does anyone know what all of that means?? From Giove, I got the big line of 95% of nodules come back benign and he's sure there is nothing wrong. We now want to do a nuclear scan to see what part of the thyroid is hyperactive. If the nodules are hyper they could take just those parts, etc etc etc. So, what I read online, this scan can be helpful diagnostically for cancer. But also read they want you with no meds for this scan... I call Giove to verify if I should be on or off the meds but am instructed to continue to take them.
June 8th the hospital calls to confirm instructions for my scan on Thursday and Friday. I've already been waiting 3 weeks for this test, and its finally here. I will soon have closure! But, they figure out I'm on my methimazole (meth), and notify me that we must reschedule to get the meds out of my system. You can imagine how mad I am. I discontinue the meth, and wait yet another 2, almost 3 weeks for the new appt June 24, 25. After 3 weeks of agonizing mental torture, the days arrive. I wish I had thought to blog while going through this because there were days I just knew my husband and I were not going to make it through this. This Graves, Hyperthyroid, whatever you want to call it had officially made me crazy! If its making you crazy DO NOT beat yourself over it. It truly effects your ability to be rationale! I was constantly thinking of the effects of RAI ablation, Total Thyroidectomy, taking hormones for life. I was constantly reading on the Internet, hearing of horror stories of people taking years to get their bodies back to the levels they should. This disease was making me crazy!
Uptake Scan was at 28% at 4 hours (normal 5-15%), 52% at 24 hours (normal 15-30%). There were no focal areas of increases or decreased radiotracer activity to suggest a hot or cold spot. I agonized over this test thinking it would be the end all of answers I needed. I thought this was a very necessary test. But it really did not do much more than confirm the hyperactivity. It did not see any of the nodules that were found in the ultrasound, meaning they were operating at the same hyper level as the rest of the thyroid. So, I guess it all had to go. I think if asked today, I would opt out of this scan, and go straight to the biopsy. It just did not serve much purpose.
Now time to get back on my meds... or is it?
The week after my RAIU Scan Giove's nurse called me Monday to "give me my results". Says scan showed me having Graves and to continue my meds and come back in 6 months to have levels re-checked. First of all, no, should NOT have to wait that long to be rechecked... Second of all, now that I've been off the meth for almost 3 weeks, the hives were going away. So, I was being a little rebellious. But then, three days later, she called me again on Thursday (as if I never spoke to her) to "give me my results" saying the doc wanted to see me in the office because he wanted me on a beta blocker because I was so extremely hyper he knew I needed some help with symptons. At this point I'm ready to come out of my skin and quite disturbed. So which phone call did I receive the wrong information? I'm thinking I'll just wait to get on anything until I see my endo July 19.
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