You MUST read this if your calcium level is 10.0 or higher! Otherwise, unless you know me REALLY well, this rather detailed account of my surgery a week ago today may be TMI. However, I promised my surgeon that I would help publicize hyperparathyroidism, because even though it is relatively uncommon, it is 70% undiagnosed so if you have a high calcium level you may have, as I did, a challenge in getting diagnosed. It took me nearly fifteen years!
Your calcium level is supposed to live in the 9's. As soon as any test results you have show your level is even once over 10.0 it is time to go to www.parathyroid.com and educate yourself. You will probably be educating your doctor as well. Don't let your physician tell you this is nothing to worry about, that prescription levels of vitamin D will fix it, or to just "wait and see." Because if, like me, you do that, you needlessly end up with some not so fun symptoms and permanent bone damage and increased risk for some cancers.
Hyperparathyroidism is caused by one of your parathyroid glands developing into a tumor. They are never cancerous, but secrete too much parathyroid hormone (PTH) which circulates in your blood, attacks your bones, and makes you feel bad. Remove it and you are cured. Sounds easy, right? Not so much.
Personally, my first workup that showed a high calcium level was fifteen years ago when I saw a reproductive endocrinologist. Over the years, I continued to have an abnormally high calcium level, kidney stones, osteopina, osteoporosis, fatigue, brain fog, and joint pain. The reason is that my lower left parathyroid, originally the size of a grain of rice, was growing what turned out to be a fairly large and robust tumor that soon obliterated it. Until I had it removed last Monday it was generating an extremely large amount of parathyroid hormone (936 - the range is 30-80) and causing my body to leach calcium from my bones. It seems counterintuitive that your body could produce too much calcium but when it does the body throws it off in kidney stones and can not use it so that your body actually depletes the stores you have in your bones. That is why when the doctor tells you this is not a problem, you should go to another doctor.
Or better yet, see a nurse practitioner. A friend and NP diagnosed my condition over the phone after I emailed her my blood work from one appointment. That was last year, and it took me another year to get the "real" diagnosis after my PCP referred me to endocrinologist who still took another year to say I "probably" had this condition. She referred me to a surgeon in her practice who said that the surgery I had last Monday was not only not offered anywhere in his health care system but was actually a "medical impossibility" which we now know to be a very uninformed statement. The surgery he offered me was the old fashioned kind for this condition where they make a huge cut in your throat that leaves a four to six inch scar and you have to stay in the hospital several days and risk some pretty scary complications. The surgery I had by Dr. Norman at the Norman Parathyroid Center at Tampa General Hospital (a fine ANCC Magnet designated facility) took minutes and left me with a one inch incision that probably won't even scar. I took motrin for pain and left the hospital under my own steam, accompanied by DH, with no restrictions.
I am hopeful that by exercising, light weight training, and close monitoring of my DEXA scans and with proper supplements,over the enxt two years that I can build back up the damage that was done to my bones.I can't get back the times I missed with family and friends because I was so tired I could not function or the years of brain fog where I made stupid mistakes at work and at home. There is no reason to endure this when this is a condition that is one hundred per cent curable so I am spreading the word. Dr. Norman is the best paratyhroid surgeon in the world. At his practice, this is all they do. If you choose to go to Tampa for this operation, your insurance will likely cover it. You will have to pay an out of network fee and your travel expenses but it will be worth it to have this condition cured.
Dr. Norman is kind and at the same time mortified that patients like me exist and present with a fifteen year old tumor (he can tell by the size and the PTH level ) that have lived with sometimes debilitating symptoms needlessly. He has a fantastic website that is designed to educate both patients and physicians. If your calcium level is 10.0 or higher, there is a 99.9 per cent chance you have this disease. If your doctor won't listen talk to a nurse. Or refer yourself. Get it taken care of and don't be like me - ignoring everything because you think that it is PMS, menopause (TAH/BSO 5/03), or you work too hard, or that in our sleep deprived nation it is "normal" to be incapacitated with fatigue. Become your own advocate and get it taken care of today! Call me or email me if you could possibly want any MORE information - inclduing a picture of my tumor. By the way, as value added, Dr. Norman sends a copy of the picture of the tumor along with a letter to all of your doctors who missed the diagnosis. Knowledge is power.
Diane Von Furstenburg
Dolce and Gabana $1750
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