COMPREHENSIVE INFORMATION PROVIDED BY PARATHYROID SURGEONS AND CENTERS WE FIND PARTICULARLY USEFUL (Listed alphabetically)
RELATED ASSOCIATIONS / INSTITUTES/ SOCIETIES WE ARE AWARE OF
- The American Association of Clinical Endocrinologists (AACE) provides a tool to search a surgeon by zip code.
- The American Association of Endocrine Surgeons (AAES) and a link to their Patient Education Site
PATIENT SUPPORT AND SERVICES
Primary Hyperparathyroid Disease
- PARAthyroid PEEPS – Public 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 Application – If 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.
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.
- Hypoparathyroidism Association Inc. Website – A non-profit patient association working to improve lives touched by hypoparathyroidism through awareness and understanding. The organization also hosts Hypoparathyroid Association Inc – Public Facebook Group
- Hypopara Lodge – Closed 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 Disorders, Thomas 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.
- National Institute of Health, Laryngoscope. December 2009; When is Surgery Indicated for Asymptomatic Primary Hyperparathyroidism? Luc G.T. Morris, MD and David Myssiorek, MD
- The Endocrine Society 2008 – Guidelines for the Management of Asymptomatic Primary Hyperparathyroidism: Summary Statement from the Third International Workshop J Clin Endocrinol Metab. Feb 2009; 94(2): 335–339.
- 2005 The American Association of Clinical Endocrinologists and the American Association of Endocrine Surgeons Position Statement On The Diagnosis and Management of Primary Hyperparathyroidism. AACE and AAES Task Force on Primary Hyperparathyroidism. Confirmed by phone on 1/16/15 to be the most recent Position Statement.
- 2004 Annals of Surgery, The NIH Criteria for Parathyroidectomy in Asymptomatic Primary Hyperparathyroidism, Are They Too Limited? Monica S. Eigelberger, MD,* W Keat Cheah, MD,* Philip H. G. Ituarte, PhD, MPH,* Leanne Streja, BS,† Quan-Yang Duh, MD,* and Orlo H. Clark, MD*
- 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
- Normohormonal Primary Hyperparathyroidism
- 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
- Primary Hyperparathyroidism with Normal PTH Levels: A modern Parathyroid Disease Entity. Cleveland Clinic 2011, Mira Milas ,M.D. and Lucy B. Wallace, MD.