I can’t even begin to explain how furious I am with UPMC’s idiotic and disorganized endocrine group! Last Thursday I called the office explaining that I needed to have labs done before the weekend and that I would like to do them at the hospital near me, and I asked if they would fax them over. They gladly agreed. Fast forward to Monday, when I go in to get the labs drawn: I arrive at the hospital, park and what not… I even have a friend on alert if I were to be unable to return home because I was light headed. I walked into the over crowded waiting room, announced my name, and the nurse there just looks at me funny. I explained to her that my prescription for the lab work had been faxed over on Thursday. This was obviously not the case. I thanked them, and moved on with my day, stopping to call my endocrinologist and ask her to re-fax it… this too was highly ineffective. I finally had someone else call for me– and he even got them to fax it to our house. So I went in yesterday uneventfully for lab work.
I know that it takes about 3 hours for the panels to come back… but that they don’t usually tell the patients until about 20 hours later– so I called, asking if my blood work had come back. The woman who had answered the phone says “yes, they’re in… please hold a moment. I’ll connect you to a nurse”. I then spend the next 7 minutes on hold, while I am connected to some nurses’s voicemail. I leave my message, knowing all the while that I wouldn’t get a response. I then called back, told the woman that she was not available and that I need to talk to a real person. She then connected me to another nurse, who said, “your results are in, but I can’t tell you what they are until your doctor reviews them”. Psht! Fuck that! Luckily I had a doctor’s appointment today anyway to meet with my PCP– he told my my TSH was 9.26. This is very very BAD. My TSH is even too high for a normal person’s TSH, let alone a thyroid cancer patient– my TSH has to be kept below 0.1, so it was almost 1000X the amount it should’ve been. This is very bad, because TSH stimulates your body by urging it to produce more T4 (thyroid hormone), which in turn can spark new thyroid cells to grow. My PCP decided it was time for a strong course of action and prescribed me (I was on 125mcg of Synthroid QD) 150mcg for one week and then 175mcg for two weeks, and then I’m supposed to get a blood test and my heart checked out so that it can be increased to 200mcg. He says he expects it to need to be over 200mcgs… which is a lot. Synthroid actually only makes increments up to 200mcg, the next one is then 300mcg… so if I need more than 200mcgs, I’m going to be taking two pills in the morning!
My PCP also got me an appointment with the best ENT surgeon in the region for tomorrow to check out what he thinks is some scar tissue building up in my throat– just so the dysphagia doesn’t worsen.
I then called my endocrinologist since they had yet to call me back, the nurse answered again and says “Oh, I was just about to call you– your TSH is still elevated, so your doctor has suggested to up your dosage to 150mcgs and get repeat labs in 6 weeks. She says she doesn’t understand why your TSH continues to rise, and she wants to make sure you’re taking your medication first thing in the morning not with any other medications and an hour before breakfast.” She then asked me if I needed a prescription, I said no, and she asked if my doctor had given me one before and I said no, my PCP gave it to me. Thanks! And hung up. Well UPMC endocrinology, sorry, but I’m done with you idiots. Obviously my internist can do way better than you, and since you’ve never gotten my TSH regulated and under 5, you lose. Go fuck yourself please.
In other news, I leave the day after tomorrow for Heidelberg! I’ll update when I am there.
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