I wasn’t overly concerned at first; after all, my doctors weren’t worried.
After routine blood tests, my calcium had been determined to be “a little high”: 10.7. “Don’t worry about it”, I was told. “Let’s wait and retest in about 6-8 months”, they said.
When my calcium level went up to 10.9 on retesting, I was told the same thing, by both doctors. “It’s not high enough to cause your symptoms”, they said, “It could just be a lab fluke. All your other labs are fine.”
By the time retesting revealed that my blood calcium had crept to 11.0, I was seriously ill with the very same symptoms that were allegedly completely unrelated to this labwork anomaly: crushing fatigue so profound that just driving home from work had become an actual daily challenge; all-over pain which made even the smallest task seem overwhelming; and, perhaps most unsettling to me, an ever-increasing distinct change in my normally easy-going, optimistic personality.
As just one example, I frequently found myself lacking both patience and empathy for blog/Facebook commenters and fellow Tweeters. I started wanting to (rudely!!) give everyone a piece of my mind at the slightest provocation. (I usually refrained from doing so, but the desire was there for the first time in my life, and this bothered me, because it just wasn’t me).
I felt as if I had aged 10++ years in a relatively short time. I probably looked it too, but, quite frankly, I simply didn’t have the energy to care. Getting through the work week became my sole goal, my Everest.
I tried to distract myself from the pain and fatigue, and Dirt was as wonderful as always at helping me in every way. I would occasionally succeed in momentary distraction, but as time went on, the good moments were becoming increasingly fleeting, vastly surpassed by sheer misery on an everyday basis.
In desperation, I finally did what I should have done much, much, MUCH sooner, but had been too busy, tired, overwhelmed, sick, stressed, and preoccupied to do:
I googled “high calcium” and voilà! The clear and obvious answer had been there all along if I (or my doctors!) had taken the time to look…
I had a parathyroid tumor!!
The road to confirming this self-diagnosis would take several months, but, to make a long story a bit shorter, I had surgery a few days ago, which successfully removed the rogue parathyroid tumor which had hijacked my entire existence.
Please help me in passing along the word. I don’t want anyone to ever suffer needlessly as I did.
So please tell your friends, your relatives, your neighbors, your coworkers, and pretty much anybody else who will stand still long enough to listen:
1). High blood calcium (hypercalcemia) is not normal, and therefore always needs follow up. If the high calcium level persists, realize that:
“Over 99.8% of all people who have a blood test that shows too much calcium will have a parathyroid problem…
It must be fixed. It cannot be “observed”…
Most adults have calcium levels somewhere between 9.4 and 9.9 mg/dl, which is why we like to say that “adults live in the 9’s”…
It is typically not normal for adults to have frequent or persistent calcium levels in the 10’s…
If you are an adult over 40 and your calcium is over 10.0 mg/dl (2.5 mmol/l) on several occasions, then you are very likely to have a parathyroid tumor…
Be careful, many labs don’t give the normal range for your age–they give the normal range for teenagers to everybody! And your doctor may not be aware of this.“
2). The symptoms of hyperparathyroidism are generally vague and/or could be mistakenly attributed to other causes. Therefore, these symptoms are often overlooked and/or misattributed by both doctors and patients.
Please take a moment to review the typical symptoms:
“Symptoms of Parathyroid Disease (Hyperparathyroidism):
Loss of energy. Don’t feel like doing much. Tired all the time. Chronic fatigue. (#1 symptom)
Just don’t feel well; don’t quite feel normal. Hard to explain but just feel kind of bad.
Feel old. Don’t have the interest in things that you used to.
Can’t concentrate, or can’t keep your concentration like in the past.
Osteoporosis and Osteopenia.
Bones hurt; typically it’s bones in the legs and arms but can be most bones.
Don’t sleep like you used to. Wake up in middle of night. Trouble getting to sleep.
Tired during the day and frequently feel like you want a nap (but naps don’t help).
Spouse claims you are more irritable and harder to get along with (cranky, bitchy).
Forget simple things that you used to remember very easily (worsening memory).
Gastric acid reflux; heartburn; GERD.
Decrease in sex drive.
Thinning hair (predominately in middle aged females on the front part of the scalp).
Kidney Stones (and eventually kidney failure).
High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).
Recurrent Headaches (usually patients under the age of 40).
Heart Palpitations (arrhythmias). Typically atrial arrhythmias.
Atrial Fibrillation (rapid heart rate, often requiring blood thinners and pacemakers).
High liver function tests (liver blood tests).
Development of MGUS and abnormal blood protein levels.
Most people with hyperparathyroidism will have 5 – 6 of these symptoms. Some will have lots of them. A few people will say they don’t have any… but after an operation they will often say otherwise. In general, the longer you have hyperparathyroidism, the more symptoms you will develop.”
3). If you have a parathyroid tumor, as I did, the ONLY treatment is surgery. It needs to get OUT of your neck as soon as possible, so you can get your life back.
4). The success of parathyroid surgery will depend HUGELY on the skill and experience of the surgeon.
For that reason, I decided to fly to Tampa to have the surgery by Dr. Politz of the Norman Parathyroid Center.
Dirt’s view from the waiting room during my surgery at Tampa General Hospital
I am 100++% thrilled with that decision, despite having to pay out-of-pocket. (I had to pay myself simply because my insurance company is a jerk; note that other/smarter insurance companies do cover this surgery, so always check).
Dr. Politz, everyone at Tampa General Hospital, and everyone else who I have encountered through the Norman Parathyroid Center have all been consistently friendly, reassuring, professional, caring, concerned, competent, honest, and helpful.
They also didn’t flinch when I introduced Dirt as my wife; they treated us and our relationship with the same kindness and respect as they did the rest of their patients.
I felt better mere hours after surgery than I had in a very long time. Less than a week after surgery, the bone pain is gone, the fatigue is gone, the acid reflux is already significantly decreased, I am sleeping better, and I feel much more alert and interested in life.
Most importantly, I am starting to feel the presence of something I haven’t felt in a long time…the old me…the real me.
5). If you suspect a parathyroid problem, please thoroughly read the www.parathyroid.com website, run by the Norman Parathyroid Center. It is packed with a plethora of information in an accessible and easy-to-read format.
6). The moral of my story is: Trust yourself. Take charge. Doctors don’t know everything. If you feel that something is wrong with your health, listen to your body and listen to your intuition. Be your own advocate, do your own research, and don’t ever accept a casual brush-off of your concerns from your doctor. Find the right doctor.
Your life depends on it.