My Story / Timeline

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.

 

January 2007 – I was brought to the emergency room for severe pain in my right side. I inquired about appendicitis or kidney stones, as my parents experienced these around my age, and was told that neither was likely. No abdominal imaging was done. I was sent home diagnosed with strep throat, and told that I was likely experiencing muscle spasms in conjunction with the strep.

February 2009 – A standard lab panel done in conjunction with my yearly physical revealed mild hypercalemia. I was re-tested, and my results were a high-normal. No further testing was done.

March 2010 – I started to experience severe pain in my left side. The pain came infrequently, and rarely lasted more than a few hours at a time.

January 2012 – A standard lab panel done in conjunction with my yearly physical revealed mild hypercalcemia. I was retested several times, and told that I should watch my calcium intake. According to my nutritionist, my calcium intake would not be affecting my calcium levels. I inquired about the pain in my side and was told it was likely ovarian cysts, a common problem, and that it may be PCOS. We would investigate if it worsened.

March 2012 – After researching causes for hypercalcemia, I insisted on my parathyroid hormones (PTH) being tested, despite protests from my PCP. My PTH levels came back slightly elevated, and I was sent to an endocrinologist.

May 2012 – I met with an endocrinologist, who informed me that my lab results showed hypercalcemia as far back as 2006. Because my vitamin D levels were low (like most New Englanders), my PCP should have expected my calcium levels to be low as well. That they were high indicated a problem. Because I was still experiencing the pain in my side off and on again, and because PCOS is an endocrine issue, I inquired about the cause of the pain. I also asked if it could be kidney stones, as hyperparathyroidism most commonly causes kidney stones, and was told that my kidney function was fine and it was unlikely to be that.

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June 2012 – I met with an endocrine surgeon. Having done plenty of research on how to pick a surgeon and what questions to ask, I knew he was underqualified. Several scans did not reveal any parathyroid adenomas, and he suggested we go in blind. I decided to seek another surgeon.

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August 2012 – I met with a new surgeon who is significantly more qualified to perform a parathyroidectomy. He ordered another ultrasound to be done in the hopes of finding the adenoma; it was found within 2 minutes on the right side of my thyroid.

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September 2012 – I underwent my parathyroidectomy. During what should have been an hour and a half long surgery, three parathyroids were removed before my PTH levels finally dropped. The third was hidden in my thyroid, and so in addition to the parathyroidectomy, a thyroid lobectomy was performed. I was told I will need to take calcium supplements for 3-4 months to ensure I do not slip into hypocalcemia as my bones recover from the hyperparathyroidism.

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October 2012 – I went for my 6-week followup with the surgeon and was told my PTH levels are normal. My calcium levels were still slightly elevated, and I’m instructed to reduce my calcium intake. I also had a followup with my endocrinologist, who informed me that my TSH levels are now elevated following the thyroid lobectomy. Because they were only slightly elevated, she did not push me to take stimulant replacement hormones. Both her and my surgeon told me that the thyroid can take time to recover, and I decided to wait.

November 2012 – I went for lab work to check my PTH, calcium, and TSH levels. My PTH and calcium were normal and “beautiful” per my endocrinologist. My TSH was still high; again, I declined hormone replacement therapy.

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December 2012 – The pain in my left side became more frequent and increased in severity. I traveled to Ireland, and nearly passed out at a concert. The pain the following day was the worst I had ever experienced, and I began taking ibuprofen and Tylenol together to cope. I also drank a ton of cranberry juice, still believing this to be an ovarian issue.

January 2013 – I was taken to an emergency room while in Ireland. Due to funding issues, they were unable to perform any diagnostic imaging. I was told that there was blood in my urine, sent home with pain killers, and told to schedule testing and an ultrasound with my PCP when I arrived back in the U.S. The pain lasted up for four weeks without easing up. Upon arriving home, I began a grain-free diet to help with the hypothyroidism and scheduled an appointment with my PCP.

February 2013 – I had a followup with my endocrinologist. My TSH levels had risen. However, I had lost some weight and was not experiencing any other symptoms of hypothyroidism, so again I declined hormone replacement therapy. I also saw my PCP and had an ultrasound done that revealed one small ovarian cyst. My PCP told me this would go away, that cysts are common for women, and to take ibuprofen for the pain.

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April 2013 – Because “take ibuprofen” was no longer acceptable, I saw a gynecologist. He told me that the cyst on my ovary was not enough to cause the kind of pain I had been experiencing, and he believed I may have endometriosis. He wanted to perform a laproscopic procedure to investigate. Prior to that being scheduled, another ultrasound was done by his own tech; she is far more thorough than the one who had performed my ultrasound in February, and she discovered a kidney stone that is currently passing. Though she had no orders to do so, she checked both kidneys and discovered several bilateral kidney stones. My ovaries and uterus were normal, with no cysts. My weight also continued to level out due to the grain-free diet.

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May 2013 – I was referred by the gynecologist to a urologist. I didn’t like him (still don’t), as he immediately he told me that “they [the other doctors] are probably right about it being ovaries” and shuffled me off for yet another ultrasound by his tech. Shockingly, my kidneys were still full of stones. The urologist ordered a CT scan of my left kidney to get a better idea of what the issue may be. It revealed a particularly large stone sitting very close to the opening to the ureter, likely causing blockages that led to my on-again, off-again pain cycle. The urologist ordered a stent placement and ESWL to break up the stone at the end of the month. The procedure seemed to go well, and for a time I was pain-free.

June 2013 – At my followup I was told that although the surgery was in some way successful, the pieces were not small enough to pass and had fallen to the bottom of my kidney. The urologist recommended a uteroscopy, and I scheduled the procedure for the second week of July. Within a couple of weeks my left side started to hurt again; I visited my urologist’s office and it turned out that one of the other stones, likely unable to move with the larger stone blocking it, is now passing. The pain, though not worse than the pain I’d experienced previously, is not pleasant.

It was also at this time that I realized, following pre-surgery labwork, that my symptoms and lab results during my ER visit in 2007 indicated kidney stones, and were ignored.

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July 2013 – A uteroscopic procedure was performed to break up the rest of the stones in my left kidney and scoop out the pieces. I was told there will be some very small pieces left that should pass naturally and without discomfort. I experienced little pain following surgery, and was almost immediately energetic and bouncy. Unfortunately, at my followup I learned that because of this procedure, my urologist discovered that my kidney is abnormally shaped, with the opening to the ureter being narrow (UPJ obstruction) as well as sitting higher than usual–a congenital disorder. Because of this, the remnants from the uteroscopy have fallen to the bottom of my kidney and will stay there without intervention. I was given the option of either another ESWL procedure, or waiting for the pieces to reform into a stone and having another uteroscopy. (I chose the latter, and thus everything is now on hold.) I was also told there is a possibility that later in life I will need to have the UPJ obstruction surgically corrected.

During recovery, I felt particularly worn out and feared that I was fully experiencing hypothyroidism. I had labs performed, expecting to begin hormone replacement therapy, and learned that my thyroid levels have returned to normal. I am also, so far, still pain free following my uteroscopy. Happy days!

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August/September 2013At my (almost) one-year followup with my endocrinologist in August, my calcium, PTH, and TSH levels were all great. The pain from my left kidney was present due to the stent, but minimal. A week prior to my stent removal, I developed a UTI. The stent was removed, I received anitbiotics for the UTI, and my pain disappeared. At the end of August, I underwent a renal scan to evaluate my narrow UPJ and any possible obstruction. No obstruction was present, and with neither kidney causing any pain, I opted for no further treatment at this time. My urologist scheduled me a 6-month follow-up for March.

October 2013 – Given how poorly I felt my PCP had handled this entire situation, I finally found a new PCP. So far, so good! She seems to understand my frustration with all the health issues, and is taking my thoughts a lot more seriously than did her predecessor. I never understood how important it was to have a good relationship with your doctors until all this happened, and so I hope she continues to listen.

February 2014I had yet another follow-up with my endocrinologist. I was actually worried about this one, as I’ve been a bit lax in my grain-free dieting, and worried my thyroid may have been affected by it. But all of my lab work came back normal! This means that I don’t have to see my endocrinologist again for another year instead of every six months! Although I’ve had a few minor “twinges” in both sides, they’ve been rare, fleeting blips, and so I am also celebrating six months of being “pain-free” since my stent was removed in August.

March 2014 – The follow-up with my urologist was brief. The ultrasound showed an empty left kidney, and an unchanged right kidney. No surprise there. Thankfully, as I haven’t been in any pain, my urologist was fine with my decision to postpone surgical treatment.

August 2014 – I celebrated going an entire year without pain!

October 2014 – Small pains return, though nothing significant. This is reminiscent of how the pain started originally in 2010–dull at first, but increasing.

November 2014 – I had an appointment with my urologist. The pain had increased again, though he insisted it could not be kidney stones or an infection. I’m awaiting lab results.

My life, to be continued…!

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