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
- International Association of Endocrine Surgeons (IAES)
- European Society of Endocrine Surgeons (ESES)
- National Institutes of Health (NIH – US)
- National Health Service (NHS – UK)
- The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
- National Endocrine and Metabolic Disease Information Service
PATIENT SUPPORT GROUPS
OUR PRIMARY HYPERPARATHYROID SUPPORT COMMUNITY ON INSPIRE
PARAthyroid PEEPS support community on INSPIRE.- With more than 100 national patient organization partnerships and over 1.5 million members, Inspire has created one of the largest platforms for patient engagement. Inspire is a community where patients are able to receive and provide support, share experiences and information. At the same time, Inspire provides the life science industry access to the true, authentic patient voice with the goal of accelerating medical progress. Learn more. Join the community
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: Norman Parathyroid Center –Public Facebook Page hosted by NPC at Tampa General Hospital in Florida. Patients with hyperparathyroidism gather, learn, educate, and support each other regarding the diagnosis and treatment of parathyroid disease.
Hyperparathyroidism Support & Information – Public Facebook Page – Like this page to connect with people from around the world! Originally started to support and advocate for those suffering from hyperparathyroidism in Greece & EU, interest required expanding the focus. This group also hosts a Closed Facebook Group you can request to join. Read the founder’s guest blog here.
Hyperparathyroidism Support 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.
Hyperparathyroid UK Action4Change – Closed Facebook Group – Founded by a layperson who is advocating for improvement in diagnosis and treatment in the UK group offers insight and support. Additional UK Action4Change Resources: Blog Site & Educational Pamphlet.
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.) to receive support from those who have experienced the same. It’s a place to meet, empathize, and strategize about next moves on the path to cure.
Parathyroidectomy After Surgery – Cured but Unwell – Closed Facebook Group. Many times surgery is the cure, but here patients struggle with health issues after they are cured. Those who struggle AFTER surgery are welcome.
Parathyroid Disease Analysis Tool – This application, developed by the Southwest Parathyroid Center and available on the center’s website, helps patients evaluate their labs and determine whether they may have parathyroid disease. Parathyroid disease is diagnosed with lab tests, and can often be determined by blood calcium and PTH levels alone.
CalciumPro APP– If your doctor is being dismissive of your lab values, consider downloading this application created by the Norman Parathyroid Center. By entering lab values the application indicates the likelihood of your having parathyroid disease.
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.
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 Association of Endocrine Surgeons Guidelines for the Definitive Management of Primary Hyperparathyroidism, August 10, 2016 . These guidelines replace the 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.
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.
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.