Resources

COMPREHENSIVE INFORMATION PROVIDED BY PARATHYROID SURGEONS AND CENTERS WE FIND PARTICULARLY USEFUL (Listed alphabetically) 


RELATED ASSOCIATIONS / INSTITUTES/ SOCIETIES WE ARE AWARE OF


PATIENT SUPPORT AND SERVICES

Primary Hyperparathyroid Disease

  • PARAthyroid PEEPSPublic Facebook Page associated with this website where people can connect, learn and stay abreast of opportunities to advocate for improvement in diagnosis and standards for surgical treatment.
  • Parathyroid Disease Awareness Group Public Facebook Page hosted by Norman Parathyroid Center. Patients with hyperparathyroidism gather, learn, educate, and support each other regarding the diagnosis and treatment of parathyroid disease.
  • Hyperparathyroid UK Action4Change –  Closed Facebook Group – Send request to join this group managed by a layperson who is advocating for improvement in diagnosis and treatment in the UK.  U.S. members are also warmly welcomed and supported as are others from around the world. Make new friends…. internationally!  Blog Site plus New 12-18-15:  Educational Pamphlet for patients to share with their physicians to help educate: Final Version Hyperparathyroid UK Action4Change Leaflet
  • Hyperparathyroidism Support Group Australia Closed Facebook Group – Send a request to join this group managed by a layperson who,in addition to providing support to patients, hopes the group will become an advocacy group in Australia to lobby health and government officials should they decide to stop funding parathyroidectomies. The procedure is under scrutiny and has been labeled as not being cost effective according to this article.  Their claim is that patients don’t benefit from having surgery.
  •  Parathyroid REOP and Persistent Disease Support – Closed Facebook Group –  A place for those who have experienced failed parathyroidectomy, persistent disease after parathyroidectomy, or recurrent hyperparathyroidism (recurrence more than 6 months post-op.) It’s a place to meet, empathize, and strategize about next moves on the path to a cure. 
  • Lab Tests Online   Website – Offers patient education on blood, urine, and other lab tests to help healthcare consumers  better understand the many clinical lab tests that are part of routine care as well as diagnosis and treatment of a broad range of conditions and diseases including hyperparathyroid disease. Since its launch in 2001, Lab Tests Online has helped millions of users learn about lab tests and discuss them more clearly with their doctors.
  • Healthgrades.com  Website – To search or learn more about a doctor or surgeon.
  • CalciumPro ApplicationIf your doctor is being dismissive of your lab values, consider downloading this application created by a skilled parathyroid surgeon. By entering lab values the application indicates the likelihood of your having parathyroid disease.
  • Angel Flight  Service – “People flying people in need”. A non-profit charitable organization of pilots, volunteers, and friends who will arrange free air transportation for any legitimate, charitable, medically related need.

Hypoparathyroidism

Note: PARAthyroid PEEPS website focuses exclusively on primary hyperparathyroid disease.  However, we are providing the following resources for those who have developed HYPOparathyroidism after surgery,  This occurs if a surgeon intentionally or unintentionally removes all four parathyroid glands or complications occur that prevent the remaining parathyroids glands from functioning properly.        

  • Hypopara LodgeClosed Facebook Group – Creating a safe and “homey” place for people to share their experiences. 

 POSITIONS/GUIDELINES/CONTINUING EDUCATION PAPERS 

To aide us in determining the extent positions and guidelines may vary within the medical community and associations for the treatment of primary hyperparathyroid disease, we have collected the following:  

  • American Family Physician August 2013 – Parathyroid DisordersThomas C. Michels, MD, MPH,  Madigan Army Medical Center, Tacoma, Washington and Kevin M. Kelly, MD, MBA, Carl R. Darnall Army Community Hospital, Fort Hood, Texas. Am Fam Physician. 2013 Aug 15;88(4):249-257.
  • American Family Physician 2003 A Practical Approach to Hypercalcemia  Mary F. Carroll, M.D., Eastern New Mexico Medical Center, Roswell, New Mexico. David S. Schade, M.D., University of New Mexico School of Medicine and Health Sciences Center, Albuquerque, New Mexico

EDUCATIONAL ARTICLES 

  • Normohormonal Primary Hyperparathyroidism
  1.  The phenotype of primary hyperparathyroidism with normal parathyroid hormone levels: How low can a parathyroid hormone go? Wallace, Lucy B. et al. The Phenotype of Primary Hyperparathyroidism with Normal Parathyroid Hormone Levels: How Low Can Parathyroid Hormone Go? Surgery 150.6 (2011): 1102-112
  2. Primary Hyperparathyroidism with Normal PTH Levels: A modern Parathyroid Disease Entity.  Cleveland Clinic 2011, Mira Milas ,M.D. and Lucy B. Wallace, MD.