how did i get so far behind?

Jul 16, 2010

 WELL it looks like i haven't posted in a while.  I haven't been by OH as often since my old computer died.

My weight is still hanging around 165.  I have picked up my activity level some, but still nothing like vigorous exercise.  My sense of fatigue and general malaise is still an obstacle.  Yes, I know that exercise is supposed to make you feel better.  In my case, I feel physically better, but it knocks me out energy-wise for days, something I can't really afford when I'm working.

However, I haven't given up on finding a solution to this problem.  As my prior entries indicated, I have discovered I likely have a problem with hyperparathyroidism, meaning one (possibly more, but likely just one) of my parathyroid glands is enlarged and malfunctioning.  This leads to "moans stones and groans" which pretty much describes how i've felt for the last ten years or so.  Older than my age, which is frustrating especially when I have a very active and healthy husband.

Well, since discovering I had "mildly" elevated calcium levels even before surgery (hovering around 10.5, dropping down to 9.5-9.9 when i stop supplementing, whereas it should be much lower due to malabsorption), i've been to two endocrinologists, had a "sestami" scan to identify the offending gland, met twice with a surgeon, and now have surgery scheduled for July 30th, just two weeks away.  YAY!!!!!  it may sound wierd to be excited about and look forward to surgery, but i feel the same way about getting this gland out as i did about RNY - going to solve problems in my life.  the risk (which is not great in this case) far outweighs the potential benefit.  Could these powerful chemical

One of the reasons i switched endocrinologists - and insisted on seeing one, period - is that i could not get my regular treaters to look past the fact that my PTH hormone levels were normal.  They see high calcium (and to the untrained eye, 10.5 doesn't seem very high) and test for PTH (parathyroid hormone) and if it looks normal (as it does in my case) they shrug and say, we'll check i in a year and see if it's gotten worse.  WHich is a horrible idea.  The fact is, IF your calcium levels are high (and remember, for RNY the "normal" range is unpredicably lower), your parathyroids should be *downregulating* to try to reduce the calcium levels, so your PTH should actually be abnormally low.  Dr. Norman, who developed the parathyroid surgery now in widespread practice, is very clear on this point and it makes complete logical sense, but try talking logic to a doctor who doesn't want to hear it.  Hence my 2nd endocrinologist.  I had  to argue (logically) with the surgeon a bit, but her reticence to do surgery had some reasonable cause (if she can't find the malfunctioning gland, scarring could make a 2nd surgery harder and riskier) i felt i could work with, and ultimately once she scanned my neck she felt 80-85% confident that they had identified the gland that was enlarged.  Not greatly enlarged, but definitely not right.

She also asked me if there was a sudden change a few years ago.  Well, i haven't felt really right since my late 30's and to some degree that's been progressively getting worse.  She said well that probably isn't your parathyroid, usually there is a sudden shift, maybe after a shock to the body.  Then I realized days later - I started interferon therapy (for the uninitiated, a form of chemo) around 2005 which I was taken off almost immediately because I had such a strong adverse reaction to the medication.  And ever since then many of the symptoms I experienced have never left me.  Namely - extreme fatigue, migraines (which I had before but never as many or as often), and chronic pain (basically fitting the description of fibromalgia).  I've been diagnosed with a few different problems since then, several of which almost certainly predated the interferon (sleep apnea being one, hypothyroidism being another) but my body took a definite and so far permanent turn for the worse after 3 weeks on pegulated interferon and ribaviron.  Could these powerful chemicals have thrown my parathyroid(s) for a loop?  It seems entirely possible to me!

Dr. Norman says that while 70-75% of patients presenting with hyperparathyroidism (try typing that twice) complain of symptoms, up to 90-95% report feeling significantly better once their parathyroid is removed.  Seems like pretty good odds to me.  Hence my excitement.

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