From Parathyroid to plain ol’ Thyroid

When I had my surgery in September, one of the parathyroid glands that was hyperactive was embedded in my thyroid. In order to remove it, half of my thyroid had to come out. Damage of any kind to my thyroid, whether intentional or not, was a major concern for me when this started, because it’s easy to slip into hypothyroidism. I was told before and after surgery, that being an otherwise healthy, young individual, the remaining half of my thyroid would likely kick in and I wouldn’t need any sort of hormonal supplement.

A month after surgery, I had my blood work done to see the status of a) my hyperparathyroidism and b) my now halved thyroid. The last parathyroid was doing fantastic – the little bugger picked right up, and my PTH and calcium levels were normal. My calcium was even a tiny bit high, and I was allowed to drop to one calcium supplement a day instead of the three I was supposed to be taking (though I had already dropped to two on my own gut). My TSH levels were at the high end of normal—4.5—when prior to surgery they had always been in the 1.5 range.

Because I had also put on weight (a symptom of hypothyroidism), my endo suggested I begin a low dose of hormone supplement. I declined. Although my surgeon said that my thyroid should kick in within 6 weeks of the surgery, I’ve also been told that the swelling in my throat and vocal issues may not completely disappear for a full six months after surgery. If that’s the case, then in my opinion my body is still healing and the thyroid may simply be taking its time. In addition, I have PCOS. That means that with the amount of sugary goodness that I was eating post-surgery and the lack of exercise, I was bound to put on weight. In fact, I was surprised it wasn’t more than it turned out to be.

Thankfully, my endo is not one of those doctors who gets to be pushy. She understood my concerns about lifelong supplements, and let me go with paperwork to have my blood retested four weeks later, and the warning to call her if I should experience heavy fatigue or any of the other major symptoms of hypothyroidism. So far, I’ve experienced fatigue. But that’s nothing new to me – my fatigue was my biggest concern regarding the hyperparathyroidism. Following surgery, I assumed my tiredness was to do with a multitude of things ranging from the obvious recovery, to the two colds I’ve had, to the fact that I’m a stressed graduate student. I’m not really ready yet to accept that it may be due to a hypoactive thyroid.

I went to the hospital on Tuesday to have my blood retested, and checked the results online yesterday. My PTH is still beautiful and indicates a successful parathyroid surgery. My TSH, though it hasn’t gotten worse, hasn’t really gotten any better. It measured at 4.49. My FT4 came in at 0.9, which I guess is low, also not a great sign.

My endo left me a message about the results and said that she would recommend starting treatment, but only if I’m suffering through symptoms. I have to see her again in February, and I’ve decided to wait until then to make a decision. Right now, I’m tired, but it’s not as though I can’t get out of bed; a lot of what I’m feeling could easily be stress and a very simple worn out feeling from all that’s transpired. My winter break start next week and I’m heading back to Ireland for the whole six weeks. Some downtime, away, will give me a better idea of what state I’m in.

That said, I had been considering a grain-free lifestyle to accommodate the PCOS, and from what I understand it’s beneficial for a hypoactive thyroid as well. Many people who don’t like the idea of a synthetic treatment have found that it can make a big difference for them. I think that will be more difficult while I’m away, but I’ll make baby steps and then perhaps launch into it when I return and see where it gets me. If it does nothing for my thyroid, at least I’ll know it’s doing something for the rest of me.

Here’s to 2013 and what I hope will be a better year health-wise!

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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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Lions, and tigers, and parathyroid glands!

OK, the title amuses me because I’m a Lion (zodiac), a Tiger (Chinese zodiac), and it seems that at least one of my parathyroid glands is enlarged and has taken control of the ship. You may be as amused or unamused as you wish.

I realize I haven’t posted in ages, but there has been a lot going on. Namely school, a brand new job, and a slew of health stuff. (I also just haven’t felt like I had a lot to say.)

I mentioned before that when I had my routine physical in January, my calcium levels came back abnormally high. The level was so little above normal that my doctor had me come back to retest it several times, thinking that it must be a dietary issue. The third (or fourth, maybe—I forget now) time I went in, I asked about thyroid/parathyroid issues, having Googled the hell out of “high calcium.” She assured me that my thyroid levels were normal. Thankfully I had researched well enough that I knew that thyroid levels being normal had nothing to do with whether or not the parathyroid hormone would be normal and asked again. Again she told me that because my calcium was so little above normal, it was unlikely that my parathyroid was involved, but she said she would check those levels anyway.

A week later I received a call that she was referring me to an endocrinologist because my parathyroid hormone levels were also elevated. Huzzah for being insistent, right?

This all happened at the beginning of March. I finally saw the endocrinologist last week. According to her, and to my records, I’ve apparently had high calcium levels since 2006. (Thank you, PCP, for neglecting to mention this for six years.) I also have significantly low vitamin D levels. Apparently, when one’s vitamin D is low, this effects the absorption of calcium, and calcium levels should also be low. The fact that mine was high (even just a little high), meant that my parathyroid gland(s) were overacting, and that should have been noticed.

The list of symptoms involved with this that I have and that people have been telling me are “just stress”: fatigue, trouble concentrating, memory troubles, aches and pains, frequent headaches, trouble falling asleep at night, lack of interest in going out, thinning hair. Um, hello! Apparently a lot of people with hyperparathyroidism also suffer changes in personality, notably becoming crankier, and a change in mood is noticed—more so by friends and family than the patient—after the gland is removed. Maybe I’ll turn into Mary-frickin’-Poppins!

There is one more test being done to rule out a rare kidney disease, but in all likelihood that will come back negative and I’ll be having surgery in August to remove the offending parathyroid gland(s). I’m not sure what this means, as I have yet to find out if I’ll be having traditional surgery or a newer, minimally invasive surgery. But for now I’ve decided that, as either way I’ll be on a diet of semi-solid foods during my recovery, post-surgery will involve daily ice cream parties. (I’m also trying not to think of the scar I’ll have on my neck as a scar, but as a battle wound.)

The great news is that for hyperparathyroidism, unlike hyperthyroidism, surgery is a likely cure (high success rate), not a treatment. Once it’s over, it should stay over. No complications or life-long medications. And I should go back to a fully-functioning 25-year-old. Well, since my birthday will have come and gone, a fully-functioning 26-year-old.

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