Tag Archives: health


Two good things, health-wise:

1. As of yesterday, my left kidney is completely stone-free. Once the stent is removed next week, I should also be pain-free.

2. I had new labs done last week, and my thyroid function is finally picking up. My TSH levels have dropped from 5.52 to 2.92. Still not back to where they were before the lobectomy in September, but the fact that my levels are lowering is a really good sign.

I will have to take care of my right kidney at some point, but because it’s not causing any discomfort right now, I can wait. And hopefully once recovery from this surgery is over, my brain will start working again and me and my thesis can start bonding again. Yay!

Tagged , , , , , ,


I had surgery at the end of May to help with the kidney stone situation. And it did help, to an extent. While it didn’t break up the problem stone into small enough pieces, it broke it up a little bit and moved it so that it is no longer causing a blockage. Unfortunately, where it is now, it is unlikely to pass on its own, so I am having another surgery in a couple of weeks in which they will actually go in and remove the pieces (and hopefully the other stones, too). In addition, after a week of blissful pain-free almost-back-to-normal living, one of the other stones, which had probably been unable to pass with this larger one blocking the way, has decided that with the passage clear it wanted to move out of the kidney. So I’m back in agony.

(On the bright side, if I ever want to have children, they say that this pain is way worse than that pain, so I should be well-prepared.)

Once the surgery is over and this stone passes, then, hopefully, I will be better. At least until they decide to take on the right kidney. Which I have told my doctor will not be for a long time because I want my life back and my right kidney is currently not a problem. So there.

Unfortunately, this whole thing has put a major stall in my thesis process. I thought it would all be over by now. Between the pain and the pain meds, I find myself unable to focus most of the time. I feel fuzzy. I’ve started to forget things that I should know–like a password at work that I’ve typed several times a day every day for the past three months. I know it’s because I’m exhausted, and from the pain meds, but it’s like I’m going crazy. It’s disheartening, and because of it I have made no headway on my thesis. I was really hoping that once I had recovered from the last surgery I would be able to get my momentum back and finish this guy up.

And now? Now I have e-mailed the head of my program and my advisor to find out what my options are if, in the month of what I hope will be clearheaded-ness after this next surgery, I am not able to finish my novel.

Between my health, my thesis, and some personal things I’ve had going on, I feel like there are just too many pieces of my life that I have no control over right now. There are times I feel like I’m just sitting on a panic attack, just waiting. And it’s frustrating.

I still want to graduate in December. That’s my goal. So cross your fingers for me that this next surgery works and I get my brain back.

Tagged , , , ,

Nice degree, can I have a copy for myself?

On at least three separate occasions over the past few years, I have asked doctors if the pain that I get through my left side and lower back could be kidney stones. Kidney stones can be a direct cause of hyperparathyroidism, and given how far back this pain has been going on and how long my blood calcium had been high (six years pre-surgery), it made sense to me. My mother also had them when she was only a few years older than me, and having a parent who has experienced kidney stones means the child has a higher chance of experiencing them his or herself.

After three years of being told I have PCOS, that the pain I felt was likely from ovarian cysts, and that I should “take a couple ibuprofen,”  I was growing weary of the “wait and watch” approach my PCP had enacted. My six weeks in Ireland between December and January was marred by several bouts of severe pain, including one that landed me in the ER.

So with the pain becoming worse and more frequent and lasting significantly longer than it ever had, I finally made an appointment with a gynecologist. This was at the beginning of April. The gyno told me there was a good chance that I had endometriosis and that I would suffer for the rest of my life. To be sure, he wanted to do a laparoscopy, which is the only way to confirm the presence of endometriomas. His nurse, after he left the room, decided to relay her story to me in which she had surgery after surgery after surgery, each one making the symptoms worse, until she, “finally just had a hysterectomy to get it over with.”

I shouldn’t have to tell you that I went home utterly devastated. I spent the weekend in a messy heap of darkness. And I mean that. I mean I reached a point at which after three years of this “mysterious” side pain, and over a year of all this shit with blood tests and scans and doctor after doctor, I believed I would never be healthy again, that there was nothing to look forward to beyond this point in my life if at twenty-six years old I felt so horrible all the time and there was no end to that in sight. And I cried. Like, really cried. A lot. For the first time in years.

The following Monday, after the emotional takeover eased up, and after much contemplation, I decided I did not buy the doctor’s diagnosis, and that I was not going to undergo the suggested procedure. I don’t have a degree in medicine, but I know my body well, and this didn’t feel right. I had acupuncture for the first time in the hopes of helping with the pain. That Tuesday, I also had a followup ultrasound to investigate the ovarian cyst on my left ovary, to see if it had grown and could possibly be adding to the pain.

Instead of the usual ultrasound techs who quickly look at what they are supposed to and send you off, I had one who investigated a little further. She found a stone in the ureter, and though she did not have an order to do a scan of my kidneys, she did one anyway and found, in addition to the stone in the ureter, four other stones, two in each kidney. Three of the four measured over a centimeter, and my left kidney showed signs of renal colic and a backup of fluids.

As in, not ovarian cysts.

As in, not endometriosis.

As in the very thing that I had asked about several times over the course of several years, INCLUDING during a trip to the emergency room in January 2007, when I woke at 6AM with the worst pain I had ever felt tearing through my right side (had actually forgotten all about this until I was told I have stones in both kidneys). This was before I even knew I had hyperparathyroidism. By the time I was seen, the pain had eased and no scans were ever done because it was never even considered a possibility.

Now, I started this blog to chronicle my writing path. I don’t like sharing too many personal details from my life, and so you’ll probably notice that my friends and family tend to be, for the most part, kept out of it. But the health stuff I’ve always wanted to share 1) as an outlet, and 2) because I think people sometimes need the real-life experience as opposed to the WebMD explanation. And my experience is  exactly why we must be in tune with our own bodies and be our own advocates. Not only did I have to be the one to push for my PTH (parathyroid hormone) levels to be checked last year, but had I not gone to see someone without a referral from my PCP and had this followup ultrasound, who’s to say how long I would have been in pain while we continued with the “wait and watch” approach?

When the gyno called a week later to apologize for his assistant’s over-share re: endometriosis, I asked if he had been told yet about the results. He hadn’t. He looked at the scans while I was on the phone with him and quite literally said, “Whoa” and “You know they say that’s the one pain worse than child birth?” I can’t do a comparison, but, um, yeah.

Everyone seems surprised, too, that I have them at such a young age. But again, I had hyperparathyroidism. My calcium was elevated for at least six years that we know of, and I wasn’t told about it until last year. It shouldn’t be a shocker that someone who had a condition that causes kidney stones has kidney stones! At some point, with my constant reminder of, “Hey, so there’s this pain in my side?” someone should have checked for kidney stones–it’s the easiest, most logical answer. The good thing is that because I’ve already had the parathyroidectomy, the condition is corrected and this should hopefully not be a recurring problem once fixed.

A friend who suffers with kidney stones passed along a home remedy that’s meant to help stones pass, or at least ease up on the pain. It’s absolutely horrifying, but since I started doing it, I haven’t taken any pain meds, and I’ve barely needed the comfort of my heating pad to get to sleep. A shot of apple cider vinegar (organic!), a shot of extra virgin olive oil, a good dose of lemon juice, followed by a TON of water, twice a day. I spend about 45 minutes nauseous and cursing the gods of all religions, but it’s worth it.

Unfortunate though it is that I now I have to be referred out to yet another doctor (I have an entourage!), I am absolutely thrilled to finally have an answer. And one that is so very, very fixable! I’d also love to get this done and over with as soon as possible so that I can enjoy my summer and perhaps enjoy a visit from a certain Irish fellow.

“Take a couple ibuprofen.” Puh-lease.

Tagged , , , , , , , ,

Six Months Post-Op

It’s been six months since having Tex and two other parathyroid glands removed. With regards to my post-op scar, I was told that by six months it would be nearly invisible. This is not the case, but that may be due to the need to expand the cut during surgery when they found they needed to explore further. Still, it’s not terribly hideous and is fading and breaking up–sort of. My parathyroid hormone (PTH) levels have returned to normal, as have my blood calcium levels. (Yay!) Unfortunately, my thyroid levels (from where half the thyroid had to be removed to take out the last adenoma) have worsened. I’m still not suffering any of the major symptoms of hypothyroidism (except perhaps fatigue, but I’m engaged in stress and another health battle that I think is a bigger problem there) and so I’m still refusing my endocrinologist’s recommendation that I begin hormone replacement therapy.

One of the major factors for this recommendation in November was that I had put on about five pounds following my surgery. I have, however, since lost those five pounds and then some. In fact, I’m only a pound more than I was this time last year, which is within a healthy BMI. When I returned from Ireland in January, I began a completely grain-free diet–no wheat, barely, rice, oats, etc., and even no corn. I had made a decision toward this before my trip, after reading up on the benefits of grain-free diets in lowering blood sugar levels and lessening (even curing) the symptoms of PCOS over time. The decisive moment came after a rather painful six weeks in another country, many tears, vomiting, an emergency room visit due to a burst ovarian cyst, an ultrasound, and my doctor, upon my return home, telling me, “Well, yeah, there’s a small cyst still there but let’s wait it out.” The “let’s wait it out” is the same response I had a year ago, but apparently my case is not considered severe enough yet despite the worsening of my pain due to the cyst regrowing over and over again. (Kind of like my high calcium levels hadn’t been considered severe until I insisted on my PTH levels being tested.)

So I’ve gone rogue and am handling things myself. The grain-free diet has been a biggie, proven already by the weight loss. Both hypothyroidism and PCOS are major culprits of difficulty to lose and keep off weight, which in turn makes the symptoms of both disorders worse. The weight loss is the only thing that kept my endocrinologist from really pushing for hormone replacement therapy when I saw her in February. But it should also be helping the ovarian issues. Along with the diet, I’ve started using natural progesterone cream and nascent iodine supplements. Both help with PCOS, both help with thyroid issues.

My next followup is in August. I’m crossing my fingers that by then things will have started to change–I know that ovarian/hormonal issues tend to take four to six months to reverse and get better, and I’ll be just over the six month mark at this appointment. I’ll be eleven months post-surgery at that point, too, so fingers crossed the same is true for thyroid. It would make for a nice birthday present.

Tagged , , , , , , , , ,

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!

Tagged , , , , , , , ,

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.)

Tagged , , , , , , ,

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.

Tagged , , , , , , ,

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.

Tagged , , , , ,

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.

Tagged , , , , , , , , , ,

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.

Tagged , , ,