Disease progression - headed to Mayo Clinic

Well, the symptoms of the hyperparathyroidism are worsening. Spending two days a couple of weekends ago not able to work or move without being in extreme agony really made me question Mayo's idea to "watch and wait." When I sent the list of worsening symptoms to the doctor (listed below), I had a reply within 6 hours with surgery scheduled for January. FINALLY! God willing it will be a quick surgery (should last about 30 minutes) with a quick recovery (should be about two weeks).
Symptoms:
· Fatigue
· Generalized muscle aches that sometimes are quite bad – I call those time periods “flares” for lack of a better term
· Bone pain – especially in the hips, rib cage, arms, shoulders
· Right side flank pain (kidney pain)
· Sudden development of micro-cavities in my teeth (I never get cavities!!)
· General weakness
· Slightly worsening mood – mostly because I’m in so much pain and can’t do the things I would like to do - most of the time I remain upbeat and positive...but it's frustrating
· Constipation (I know, too much information - but it's a reality for us with Hyperpara)
· Osteopenia (pre-curser to Osteoporosis - significant bone loss)
· Tinnitus - I just learned that elevated blood calcium causes ear ringing - and mine is severe and sometimes impacts my ability to hear and sleep (just ask Bob).


If the surgery is successful, it literally reverses the bone loss! I'm on a Facebook support group for Hyperpara out of the U.K. and so many have said they wake up from surgery with no bone pain. WOW. I've been living with thyroid cancer for nearly 20 years and the pain of hyperparathyroidism is 100 times worse than anything I have had from thyroid cancer.


For those of you wondering, the parathyroids and the thyroid are not at all the same thing - they just hang out in the same neighborhood - the neck. In my case, when my thyroid was removed, one parathyroid was removed also - the surgeon found it and reinstalled it into the muscle wall of my neck. So technically I still have all four parathyroids. One of them has grown an adenoma or a tumor on it which is pumping out excessive parathyroid hormone. My theory is that this is due to significant neck radiation so I do blame the thyroid cancer for this part of my life's journey.  Parathyroid hormone controls blood calcium levels - mine are elevated thanks to the little adenoma. Since a "bad signal" is being sent out into my body that I need more blood calcium, it's leeching calcium out of my bones and teeth to satisfy this need. Dietary calcium adds to the bone pain.

As with every medical adventure, this allows me to give back!  I'm getting more involved with the hyperpara group out of the U.K. (they are far ahead of us with this disease in the U.K. vs. the U.S.A.) and I hope to bring more awareness to it around the world!

For a great (one hour) seminar on hyperpara - click here: http://endocrinesurgery.ucla.edu/webcast.html 

There's much to be THANKFUL for - Happy Thanksgiving everyone - gobble gobble.