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Re: Parathyroid disease with normal calcium levels
robmidi Views: 16,782
Published: 9 years ago
This is a reply to # 2,024,062

Re: Parathyroid disease with normal calcium levels

My wife just had surgery at the Norman Clinic in Tampa.  We live in Fresno, CA.  She had gastric bypass in 2007, so takes calcium citrate supplement (1,000mg daily).  After 3 or 4 follow-up labs, her gastric surgeon told her she was not absorbing calcium.  In 2011, finally found out what that could mean:  HPTD.  Found and did extensive research.  Gastric Dr. said "you're not absorbing your calcium"  and upped dose from 1,000 to 2,000 daily.  Finally changed to liquid as more absorbable.  Was sent to an Endo who did a Bone Density Scan (osteopenia) and a Sestamibi scan (negative.  Worthless, most are negative.).  Was sent to an Endo Surgeon who mis-diagnosed "secondary".  Said I can't diagnose primary as your "numbers are jumping all over the place." (which is typical with HPTD).  "You will feel worse if I do exploratory and find nothing than if I do not," so back to gastric surgeon who wanted to "monitor your PTH/Calcium levels - periodically" (in other words, wait and see). 

First aha moment:  "People live in the 9s, NOT in the 10s" (calcium), taken from  My wife's first six sets of labs were in the 10s with a general uptrend.  Her PTH was at it's lowest (82) when her calcium was at it's highest (10.9); and conversely her PTH was 189 when her calcium was 9.4.

Second aha moment:  You can NEVER cure HPTD by adjusting vitamin D and calcium supplements.  Period.  You have a tumor and it has to come out.

Third aha moment:  My wife had 12 out of 16 of the symptoms listed on and they were getting worse, especially the depression, bone pain and crankiness.  Due to these and a few other reasons, we took a trip to Tampa and got a tumor the size of a penny removed from her neck.  Came home a couple days later and can report:  Insomnia is on the wane.  Depression is 90% better.  Bone pain gone the next day after surgery.  Energy level gets higher all the time and mental "fog" starting to lift, and we're only three weeks out.  Due to the relative rareness of this illness, most doctors are unfamiliar with it and mis-diagnose it regularly.  Believe the testimonials you read on  Dr. Norman is a jewel of a surgeon.  Procedure took 16 minutes.  At 8 weeks out we get labs done and see where PTH/Calcium levels are and if any adjustment in supps needed. 

Don't go to any surgeon who does not do a "mini", as you will end up with an ear-to-ear scar.

Hope this helps.



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