Monthly Archives: June 2012

Parathyroid: Stalemate!

Today, my surgeon says to me, “I have some good news and some bad news, which do you want first?” As someone who is impatient in general and thus ready to get this over with, I was thinking he was going to tell me that my 4D-CT showed which of my glands is acting out (good news) and that now we’ll have to schedule the surgery (“bad” news).  No. He tells me that the “good” news is the 4D-CT didn’t show anything. “The bad news is that we still don’t know which gland is causing the trouble.”

Well, all right. Highly subjective terming of good and bad news there, but all right.

Then he tells me that because my calcium is only slightly elevated, because I am young—I’m coming up on my 26th birthday—and because I am what they term “asymptomatic “ (most of my symptoms are considered secondary, not primary—fatigue, excessive thirst, headaches, crankiness) he would recommend waiting. This is only the fifth or sixth thing he’s said to me to show how little experience he must have with hyperparathyroidism. Everything I have read that is of any worth has stated clearly: DO NOT WAIT.

From Parathyroid.com: “The advice to wait until your calcium goes higher makes no sense, and is advice from the 1970’s. We know much more now.  Parathyroid disease will ALWAYS get worse. It will never get better on its own, and it will never stay the same.”

And why would I wait anyway? He said, “You don’t have bone pain,” – yes I do – “so we’ll just monitor you closely.” Oh, so that you can wait until I, at 26 or 27, DO develop consistent bone pain? DO lose bone density? I already feel twice my age. Would you rather wait until I feel three times my age? Because I’m not particularly comfortable waiting. I already have joint pain in my knees, wrists, and elbows. And I DO get bone pain in my shins. At 25!

He said he would wait to talk with my endocrinologist when she’s back from vacation—a couple of weeks—and they would figure out the best approach from here. “Pretty much we’ll monitor you, closely, and maybe when you meet with her at the end of July we’ll have you get a bone density test.”

I walked out of his office confident I would find a new surgeon. So I called my insurance to find out my options for getting a second opinion and—none. The surgeons that I found in Boston who have significantly more experience in this are not contracted through my insurance company. (I’m a poor grad student—I get free health care, and the options are terrible.) The guy on the phone couldn’t find anyone in the area who is contracted and experienced in head and neck surgery, endocrine surgery, thyroid surgery. In the end he gave me the names of two more general surgeons, for what use I don’t know.

Temporary though it may be, I feel like I’m at a stalemate.

On the bright side, I’d been putting off visiting my family in Ireland due to all of the appointments, possible surgery, and possible recovery time. This morning, though, I looked up tickets. I think I’ll buy them.

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Hulking Out: The Parathyroid Saga Continues

After I met with the endocrinologist I was told I would be scheduled for some scans to try and identify which of the parathyroid glands is/are acting out. There seems to be a level of arrogance mixed with incompetence when it comes to all of this; several times appointments have just been made for me, last minute, without any concern over my own schedule, and of those times, twice now I’ve been given the wrong information or no information at all. Thankfully I’m a real pain in the ass and call until they finally answer me, otherwise I would have missed one of my scans.

I had two scans last week, an ultrasound and a parathyroid (sestamibi) scan. I’d researched enough to know the ultrasound was pointless—they almost never show anything in my situation—but no one had said I was getting that in addition to the parathyroid scan until I arrived at the hospital. It didn’t take long, though, and I was close to asking if the technician would just stick the thing on my side while I was there and find out what’s going on with all that. The technician I had for the parathyroid scan was delightful and entertained my jesting about hulking out when he injected me with the gamma rays. I’m not particularly comfortable with the idea of anything to do with medical treatments and side effects—drove my ex nuts with all my reasons that my body and Western medicine don’t get along—and the only way that I can deal with it all is to just joke about it. So I told everyone for the rest of the day not to make me angry. The test itself was terrifying; I had to lie down, and the thing that takes the images is a flat square that was lowered to about half an inch above by nose. I literally lay there with my eyes closed sing-songing in my head, “Happy place, happy place, happy place.”

Neither of the tests showed anything to do with the hyperparathyroid. Found that out when I met with the parathyroid surgeon a few days later. I love it when doctors act like you’re an inconvenience. I mean, he was nice, sure, but he was rushing. He just kept chattering at me and asking me questions really fast. He didn’t even ask if I had questions until the end of the appointment when I said, “So…” and whipped out the paper I had with all my questions on it. He sat back down and said, “Oh, you have questions?” Fuck yes (excuse my language) I have questions. You want to open up my throat, of course I have questions.

Anyway, I didn’t like him. First of all, he said something along the lines of, “Sometimes in these situations we see if increasing the patient’s vitamin D intake will help with the problem. Obviously it hasn’t in your case.” No, it hasn’t. Because vitamin D deficiency does not cause hyperparathyroidism. I was told to take vitamin D so that when my parathyroid is removed, my calcium doesn’t take a dive. Know your shit. He also doesn’t perform enough parathyroid surgeries in a year for me to be comfortable–125 thyroid and parathyroid, about 25% of those are parathyroid. Hm, no. And he said that if the next scan, a 4D-CT, doesn’t reveal which parathyroid is causing the problems then he’ll have to do an exploratory surgery and that in that case he tells his patients to “pick which side feels luckiest and start there.” Bite me!

I had my 4D-CT yesterday. That was fun. Can I just say that the little gowns and the robes they give you in the hospital are not completely uncomfortable? It was 94 degrees outside yesterday; I could have hung out in that thing in the air conditioned radiology unit for hours. Turns out I was only there for one. Put in the IV, inject saline. Get me in the machine, inject—ink? I think they said ink. Whatever it was it made me feel super warm for about 30 seconds. Take some pics of my glands, and then watch me for 20 minutes to make sure I don’t have some kind of adverse reaction to whatever stuff they’d injected me with. Sweet.

I have my second meeting with the surgeon tomorrow to see whether or not the scan shows anything. I was quick last week to decide I would be getting another surgeon, but I’m going to see what he says tomorrow before I call Mass Gen or Brigham and Women’s and demand appointments with people who do this more regularly.

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