MY TEENAGE YEARS

I had always been a healthy child, but in my teenage years I started to feel like something was off. This feeling was accompanied with a few fainting spells and so my doctor at the time decided to run some blood tests. My blood tests showed I had slightly high calcium for my age, but because I had low blood sugar at the time, I was diagnosed with hypoglycemia without diabetes instead of hyperparathyroidism. It is important to note that hyperparathyroidism is often associated with older women and hypoglycemia occurs more often in young females. According to http://www.parathyroid.com, parathyroid disease is extremely rare for those under twenty and is often only diagnosed after some sort of “event” like kidney stones or a broken bone. (https://www.parathyroid.com/age.htm), Therefore, I went into my early adulthood without a diagnosis or a doctor even mentioning hyperparathyroidism.

INTERSTITIAL CYSTITIS AND KIDNEY STONES

In 2012 I started to have issues with my bladder and for the first time I met with a urologist. The urologist did a scope of my bladder and found damage on my bladder walls. The urologist diagnosed me with Interstitial Cystitis and gave me recommended books to read about changing my diet for this disease. The reading made me believe I had some sort of gluten or wheat allergy that I thought flared up my Interstitial Cystitis. For years I was on a wheat-free diet thinking I was helping my bladder issues, but it was only a couple years after my Interstitial Cystitis diagnosis that I ended up at the hospital for a kidney stone that needed to be broken down. 

Sadly, my hospital visit was only the beginning of a gradual decline in my overall health. I had always been a very energetic person, but I progressively started to feel exhausted all the time.

I was seeing a new doctor from the one I saw in my youth and I kept asking the doctor what to do about my severe fatigue. The doctor chalked it up to my being overly stressed about my studies, as I was in graduate school at the time. I would find out later that I did not have Interstitial Cystitis, but that my bladder had been damaged by the kidney stones due to my underlying and undiagnosed hyperparathyroidism.

MISDIAGNOSED AND TREATED FOR LUPUS

My struggles with fatigue persisted. Eventually my doctor ran tests which led the doctor to believe I had Lupus. I was put on Lupus medication. Regrettably, I never met with a rheumatologist to get a second opinion nor did my doctor order further blood panels to check for false positives.

I cannot even begin to describe the level of sick I felt on the prescribed medication. I was so sick that I was unable to hold down food for a couple of months and my professors encouraged me to take a break from school to focus on my health. My weight ballooned and I gained 40 pounds in a short amount of time. This was the first time in my life that I had ever struggled with a weight problem and my self-esteem plummeted to new lows. Along with the weight gain, I started to lose my hair; I lost hair on my head, eyebrows, arms, and on my legs. I was miserable. Eventually the doctor who put me on Lupus medication left the practice. This doctor’s replacement did another blood panel that revealed that I did not have Lupus after all, and I was taken off the Lupus medication. 

SYMPTOMS OF HYPERPARATHYROIDISM

In 2017 my blood pressure and heart rate spiked, but my doctor and I thought this was because of my rapid weight gain. I was told to lose the weight and come back. I lost some of the weight, but my blood pressure and heart rate only elevated. Plus, time only made everything worse. I was very irritable and had little to no patience. My memory was suffering – I could not remember things I did 10 minutes ago. I was passing tons of kidney stones a month, I was starting to faint frequently, and my body severely ached. I thought all my symptoms were psychosomatic and I felt crazy. I tried confiding in friends and family but was reduced to “being dramatic” or “wanting attention”. Thus, I started hiding all my symptoms from people out of fear I was crazy, and I was hopeful that I could heal myself privately without anyone knowing or seeing what I believed to be psychosomatic.

REFERRALS AND TESTS 

Of course, the symptoms never got better, and someone finally questioned me in 2018. While my husband and I were dating, I passed out a couple times and told him it was just hypoglycemia. (Remember, this was one of the original hypotheses regarding my poor health.) My reasoning for fainting only “bought him off” for a couple of months and it was not long until he had me meet with his general physician. The doctor really listened to me and did another blood panel. The blood panel suggested I had an auto-immune issue, but the doctor eased my ongoing fears about potentially having Lupus, because he said that a full blood panel is needed to get a good read on the issue which I found out my previous doctor did not do. 

This GP noticed my calcium being high (see Table #2, 2018) and suggested hyperparathyroidism as a possible reason for my symptoms, but because I was so young, he wanted to test if I had neurocardiogenic syncope first and did not run a parathyroid hormone (PTH) test. I later learned that if a doctor suspects a patient to have hyperparathyroidism, they will test the calcium and PTH levels from the same draw, as it is the relationship of the two values that enables a proper diagnosis.  But I assume, because I was young, hyperparathyroidism was deemed unlikely so my PTH was not tested. Instead, I was referred to a cardiologist who had me on a heart monitor for a week to test my heart from day to day. In addition, I had an echocardiogram and a tilt table test. The test revealed that my heart had no homeostasis and would fluctuate regardless of my postural position (like sitting or standing). However, this was not indicative of an underlying heart problem, and so I was referred to a rheumatologist. 

ADVOCATING AND FINDING ANSWERS!

In 2019, my husband (who has a PhD in psychology and has a lot of experience in the medical field) did some researching of his own, and was convinced my issues were calcium related.

When we went to the rheumatologist, my husband pushed for the focus to be on the high calcium value of 11.5 mg/dL rather than the auto-immune issue. This led the rheumatologist to make a referral to an endocrinologist. 

When we visited the endocrinologist, Dr. Serhal at the Cleveland Clinic (https://my.clevelandclinic.org/staff/4750-dina-serhal), she looked through my charts, instantly noted my high calcium and said there was no doubt that I had hyperparathyroidism. 

Table 1  Parathyroid Hormone (PTH) Value 2019

I know this is weird, but I felt such relief to be diagnosed. It had been such a long time to get to that place and I was more than ready to just get better. Dr. Serhal had me look up at the ceiling and swallow and this revealed a golf ball-sized lump in my throat. I had never noticed that before and it felt bizarre to see for the first time, and my husband’s mouth dropped.This was also the first time my PTH was tested. My PTH was incredibly high as shown in Table 1 below and my blood calcium was 12.3 mg/dL (see Table 2, 2019)

Unfortunately, I was not able to obtain my calcium records when my symptoms first started but I was able to acquire my calcium records from 2014 on. The chart below indicates my calcium levels and the standard range of calcium listed on my labs from 2014 to 2021, as provided by my physician. 

Table 2. Blood Calcium Levels (Note: Scroll through table to see all values from 2014 – 2021)

2014	2015	2016	2017	2018	2019	2020 (After Surgery)	2021
10.0 mg/dL	10.0mg/dL	10.8mg/dL	10.4mg/dL	11.5mg/dL	12.3mg/dL	10.2mg/dL	9.4mg/dL
Standard Range 8.6 -10.4mg/dL	Standard Range 8.6 -10.4mg/dL	Standard Range 8.6 -10.4mg/dL	Standard Range 8.6 -10.4mg/dL	Standard Range 8.5 -10.2mg/dL	Standard Range 8.5 -10.2mg/dL	Standard Range 8.5 -10.2mg/dL	Standard Range 8.5 -10.2mg/dL

REFERRAL TO AN EXPERT SURGEON

In the same appointment we talked about surgeons and I knew I wanted Dr. Siperstein from the Cleveland Clinic, as he is well known for his expertise in hyperparathyroidism (https://my.clevelandclinic.org/staff/3299-allan-siperstein). Dr. Serhal sent over my information to Dr. Siperstein and, while I was in the appointment with the endocrinologist, his office called to set up an appointment. I first met Dr. Siperstein in late 2019 and had my surgery in early 2020. Dr. Siperstein was absolutely wonderful and answered all my questions! He was very thorough and did a scan of my parathyroid in his office where I was officially diagnosed with primary hyperparathyroidism.

Later I found out I was in the two percentile for bone density. The percentile was based on a z-score, which is an appropriate measure for a female of my age. Z-scores are based on the number of standard deviation units that a value is from the mean (average). For example, if the average number of hours worked in a day is 8 and the standard deviation is 1 hour, then a 7-hour workday would be 1 standard deviation below the mean or a z score of -1, likewise if it was a 9-hour workday then it would be a z-score of +1. So, the z-score will tell you what percentage of values are above the current one, so a z-score of -2.3 (which was the z-score of my left forearm) would be about the 2^ndpercentile, meaning that 98 percent of values would be higher than that.

At the time Dr. Siperstein believed one of my four parathyroid glands and thyroid were diseased, but surgery revealed something different. My thyroid was not diseased, but I did have a parathyroid adenoma; a noncancerous (benign) tumor of the parathyroid gland removed. 

For context, a typical parathyroid is about the size of a small grain of rice. My parathyroid weighed 3.007 grams and was 5 cm, thus slightly bigger than a golf ball. My PTH and calcium were taken before and after the surgery as shown below in Table 3.

Table 3 Calcium and PTH Intact – Before & After Surgery

	Before Surgery	After Surgery
Calcium Value	12.3 mg/dl(8.5 -10.2 mg/dl)	11.1 mg/dl (8.5 – 10.2 mg/dl)
PTH Intact Value	562 pg/ml(15 – 65 pg/ml)	11  pg/ml (15 – 65 pg/ml

Some of my earliest calcium values were in normal range for a young adult. What was a possible reason for that? I have learned that water consumption plays a bigger role in calcium values than one would think. My surgeon, Dr. Siperstein, advised me to drink a lot of water as I waited for my scheduled surgery date to arrive, to help mitigate the symptoms of hyperparathyroidism. Harvard Health notes that drinking at least six to eight glasses of water each day lowers the chances of kidney stones in patients with hyperparathyroidism. (https://www.health.harvard.edu/newsletter_article/so_you_have_primary_hyperparathyroidism) 

Plus, in severe cases of hyperparathyroidism, one may experience increased thirst. https://my.clevelandclinic.org/health/diseases/14454-hyperparathyroidism

I used to be the kind of person to consume a lot of water, the longer I lived with the undiagnosed hyperparathyroidism, the more water I drank. At one point I was drinking fifteen 16 oz. water bottles a day! Since I was drinking so much water, Dr. Siperstein suggested that my calcium values were most likely higher. However, the increased consumption of water diluted the calcium. In simple, the high calcium made me thirsty, and the thirst made me drink more water which lowered my calcium levels temporarily. 

POST SURGERY

After the surgery, I INSTANTLY felt better. If felt like a whole new person and it was as though this fog had been lifted!

I was walking around the same day I had the surgery and my levels started to drop into normal range. The next couple months were amazing because my hair started to grow back, my memory got better, I did not pass out, I did not have kidney stones, I did not feel so irritable, my body did not ache, I lost weight without trying, and I actually felt like myself again. 

I met back with my husband’s general practitioner (who is now my general practitioner) and my blood work was the best it had ever been. However, I did still come up positive with an auto-immune disorder and, after a lot of testing, my doctor diagnosed me with Raynaud’s Phenomenon as part of CREST Syndrome. Currently, I am asymptomatic for the other components of CREST Syndrome. A couple months after that I went in for a check-up and my heart rate and blood pressure were normal! My heart rate and high blood pressure were the biggest things to me because they were the source of my fainting spells. When I finally had that under control, I felt like I could finally enjoy my life again!

There has been some time since my surgery in 2020, and I have not had any of the symptoms I had before! I cannot believe it took so long for someone to really help me.

I cannot believe how many times I was written off because I was a young girl. I feel so lucky I was finally put in front of the right people because that has made all the difference.

I know that my story is not unfamiliar to young sufferers. As noted, diagnosing hyperparathyroidism in those under twenty is often done after an “event” and slightly elevated calcium is often left unchecked or in a “let’s see what happens” mentality. With that said, the impact of hypercalcemia does not know age and can be detrimental to any person’s life; young or old. I hope that by sharing my story I can further educate people about the importance of high calciumand illustrate to people suffering from this disease that there is light at the end of this parathyroid fog.