Tag Archives: parathyroid

Welcome!

DISCLAIMER: The purpose of this blog is for me to share my experience with my health problems, as I found comfort in the experience of others when I first started to research what I was going through. No post or information offered on this blog is meant to take the place of proper medical advice. If you have questions about your health and what measures to take, I suggest arming yourself with knowledge. That means researching the matter thoroughly so as to be better able to discuss it with your doctor and understand what is happening and how to proceed.

 

This blog covers my experience with Hyperparathyroidism and, subsequently, Kidney Stones from the struggle with being properly diagnosed, diagnosis, and then several surgeries and follow-ups. If you’re looking for specific information, I suggest starting with My Story / Timeline, which explains the experience starting in 2007 and highlights related blog posts. I’ll update this page as new information becomes available.

You should also check out the Resources page for websites I found helpful during the process, and grain-free dieting which helped me during my recovery process.

If you have any additional questions or feel like chatting, just comment! I’m happy to answer as I can.

Kayleigh

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Parathyroid: Game Over

I finally had my parathyroidectomy on Thursday. I am returned to you now shy not one, not two, but three parathyroid glands. My surgery was longer and more complicated than expected, with the first two “suspicious” parathyroid glands removed in the first hour and a half. My surgeon had closed me up and been ready to send me to recovery when my lab work came back to say that my PTH levels hadn’t dropped, meaning there was another bad gland.

And it was hiding.

My surgeon had to do a full exploration, going down as far as my thymus to look for the gland. My adenoma was actually residing within the right side of my thyroid, and so I had to have that removed as well. My surgeon said that when this is the case, the adenomas usually pop out easily, but not mine. It had burrowed nice and deep. As soon as the half of my thyroid was removed, my PTH levels plummeted.

I was in surgery for five and a half hours total and ended up having to spend the night in the hospital. My time in recovery was the worst of it. I literally felt as though someone had slammed me into a cement wall again and again and again. I was expecting the neck pain and the shoulder pain. I’d prepared for that. I had not prepared for the bruising through my chest from the exploration. It was like I had severe whiplash and bronchitis rolled into one. AND they must have had my right heel up against something during the surgery because it was very red after surgery, very sore, and on the surface is still numb to the touch three days later.

Anyway, the good news is that the problem should be fixed. I have to take calcium supplements for a while—possibly for months—to make up for all of the calcium my bones have lost in the (likely) years that I’ve had this. My body also has to adjust to working off of a normal calcium level. While my levels were normal leaving the hospital, my surgeon explained that my body has gotten used to functioning off of levels a good two points above where I’m at now. So it’s all going to be an adjustment. I also have to be careful that my bones don’t suck up so much calcium that I go into hypocalcemia, thus the supplements. (And ice cream. Lots of ice cream.)

I’m doing okay today, although feeling a bit foggy. The stiffness is still present in my neck and shoulders, but my chest is finally starting to ease up a bit. I can breathe without feeling like some fat kid is sitting on my chest. I’m also sleeping at night. Like, actually sleeping. As in falling asleep within a reasonable amount of time of lying down and then staying asleep until morning. It’s pretty amazing, and I can’t wait to see what else changes over the next few weeks and months.

The mental/emotional aspect is what I’m having the most difficult with at the moment. I won’t look at myself in the mirror because it terrifies me to see the mark on my neck. And when my mum was explaining to my aunts on the phone how the procedure went, I had to block my ears and walk away because it made me nauseous. Wasn’t really expecting that so I’m not sure how to deal with it.

Follow-ups in a month with the surgeon and endocrinologist. My surgeon said he hopes my concentration issues clear up by then and I can present him with the next great American novel. Harhar.

(P.S. This is apparently my 100th published post. It’s a pretty good one to be #100.)

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Parathyroid: Surgery scheduled!

I’m going to cheat and take this from an e-mail I wrote earlier, with a few edits and additions…

I went into Boston today to meet with the new surgeon. He was lovely, much more personable than the last one, and so much more knowledgeable about parathyroid disease and the parathyroidectomy–he also does significantly more of them in a year than did the other fellow I saw. He said that he did understand where my last surgeon was coming from on the waiting thing, that that is usually the stance they would take with someone who is young, has only slightly elevated calcium, and is asymptomatic. He also agrees that being so young, there’s a greater risk of another adenoma becoming a problem later on, which factors into that desire to wait. But, unlike the other surgeon, he believes from what I told him that I am, in fact, experiencing too many symptoms to ignore this. Like he said, “You’re a writer and you can’t concentrate? So really I’m all that stands in the way of the next great American novel.” Ha ha. (No, I don’t think I’m on my way to writing the next great American novel. Far from it. But I was amused nevertheless.)

So I am having my surgery on September 20th! (Bar any emergency surgeries on his part.) I am so happy, excited, relieved, and terrified all at once. He said it is going to be tricky–people like me without positive scans may just have had a bad scan (scans, in my case) done, or it could be some rarity like an extra gland, or an adenoma that’s hiding in my chest or in the thyroid itself. I’m going to have another ultrasound done by someone more experienced in hyperparathyroidism either on the same day as or close to my pre-op procedures. I also had a lot of blood taken today (I think I counted somewhere around 10 vials!), because he wants to check my levels and to test for signs of the MEN1 gene, just in case.

For a week pre-op, he also wants me to stop taking all medications and vitamins, except the vitamin D. I guess there’s still just too much back and forth on the D issue. Like my endocrinologist, he believes that taking the D is important because without it balanced post-op, the calcium levels with drop too low instead of evening out. So I’ll do that. My issue is with ceasing things like ibuprofen and Excedrin—they’re how I survive my (almost) daily headaches. I may very well be one cranky little thing the week leading up to this surgery.

Regardless, this phase of my life is hopefully coming to a close in less than three weeks. Fingers crossed I don’t have any of those pesky rare complications.

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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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