Tag Archives: PCOS

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 , , , , , , , ,