  Shawn Louise Female Mount Vernon President of the North West Chapter for Hypo-Para-Thyroidism 501 (c) 3 org 2004 2010 current lic Washington State under Shawn L Blumenfeld President : Shawn L Blumenfeld Vice President : Matt Blumenfeld Secretary : Mike Noland Need information email shawnylou@gmail.com Base /Office/Information Location: Mount Vernon Washington Information help for areas Oregon,Alaska and BC,Canada Shawn is a Primary Hypo-Parathyroid and is on Rocaltrol and Forteo 2 injections daily plus 2500 mg calcium and magnesium you can get medical assistance through University of Washington Medical Center http://uwmedicine.washington.edu/Facilities/UWMedicalCenter They will go off your income and have an excellent endocrinology clinic available there. you have to fill out all the paper work and the wait for an appointment is a bit long but well worth the wait.They do have an emergency room if you are in dire need. Please call 911 not a doctor if you are not well at that horrible point anyway for the doctor cannot help you if you have a hard time standing because you are too dizzy or have severe tetany or chest pain. CALL 911. This is an information site and we are not doctors so get a DOCTOR *FYI*
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HYPO-PARA-THYROIDISM
PARATHYRIODS ,4 TINY ORANGE FOOT BALL LOOKING ORGANDS SITTING ON THE SIDE OF THE THYROID GLAND. 2 ON EACH SIDE. THEY PRODUCE PARATHYROID HORMONE http://www.medterms.com/script/main/art.asp?articlekey=4773 A gland that regulates calcium, located behind the thyroid gland in the neck. The parathyroid gland secretes a hormone called parathormone (or parathyrin) that is critical to calcium and phosphorus metabolism. Although the number of parathyroid glands can vary, most people have four, one above the other on each side. They are plastered against the back of the thyroid and therefore at risk for being accidentally removed during thyroidectomy. United States Primary hypoparathyroidism is rare. Familial cases occur with autosomal dominant, autosomal recessive, and X-linked transmission.1 in 100,000. in Primaries and in familials.United Stateshttp://emedicine.medscape.com/article/122207-overview Psychiatric studies for Primaries http://www.endocrine-abstracts.org/ea/0011/ea0011p169.htm Two cases of idiopathic primary hypoparathyroidism C Badiu1, D Cristofor2 & M Coculescu1 1C. Davila University of Medicine and Pharmacy, Bucharest, Romania; 2C.I. Parhon Institute of Endocrinology, Bucharest, Romania. -------------------------------------------------------------------------------- The clinical spectrum of chronic hypocalcemia mimics various neurological and psychiatric pathologies. Although infrequently encountered, the diagnosis of non-iatrogenic primary hypoparathyroidism has to be considered in order to avoid severe complications or at least to improve neurological manifestations. We present two unrelated cases of primary hypoparathyroidism clinically manifested in adulthood (case 1) and childhood (case 2). Very low-levels of PTH (3.1 and 0.11 ng/ml) during concomitantly hypocalcemia (6 and 6.6 mg/dl) with hyperphosphatemia (6.39 and 6.51 mg/dl) made for the diagnosis. However, the diagnosis was obvious only after developing known complications due to chronic hypocalcemia (subcapsular cataracts, cerebral calcifications). In one case, the long history of tetany crises was misattributed to a conversion neurosis despite repeated low serum calcium levels. Association with oral candidiasis not retractable after correction of hypocalcemia in the first case suggests the presence of polyglandular autoimmune syndrome type I. Early onset of symptoms and high calcium excretion levels in the second case raised the suspicion of a familial (autosomal dominant hypocalcemia) or sporadic mutation in the calcium sensing receptor. Remission of symptoms was achieved using calcium and 1alpha-hydroxyvitamin D as treatment, since PTH replacement therapy is not yet available in current medical practice. However, check-up revealed very high calcium excretion levels in the first case, calling for dose management and association of thiazide diuretics.that was back in the 80's now we have : Forteo : a medication which was a protocal study years ago , was researched for the use parathyroid replacement but was approved for osteoporosis patients instead. HP patients can be subscribed this medication on off label if their insurance companies will cover this . For a two week supply the medication can cost 945.00 if you need 2 injections a day . Wal-mart might be cheaper. --------------------------------------------------------------------------------  
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Harvard Questionaire This is a questionaire James sent out yesterday [exact text ] to one and all of us as a voluntary program being studied at Hravard regarding surgical Hypoparathyroidism.
I encourage ONLY SURGICAL HYPO-PARA-THYROIDISM onsets respond to this ONLY them no matter what Dr Dan .Ruan said. I feel that there is a HUGE enough difference that it needs to be separated because of the cancer issues and the way the patient is treated and ignored because of errogance on the physicians side usually by making the mistakes they made during the surgeries. Secondly: we as a separate group have many issues totally different in how we are perceived in the medical community and treated imo. Most Edocrinologists believe [especially in Emergency rooms ] that you can treat many of us out of ER [ I want Chronic clinics set up for chronic illnesses too ] most patients MD clinics are not set up for IV calcium fusions. This is for surgicals please take the time and go to Harvards site and fill out the questionaire please*This is from James Sanders news letter produced yesterday October 7,2009 Thanks ,ShawnLfprb Washington State HpTh President Hypoparathyroidism Association Special Bulletin October 7, 2009
Dear Friends and Associates, From time to time we have been asked to assist the medical community in medical research to help them understand Hypoparathyroidism, a rare medical disorder which has invaded our lives. Some of these requests are for patients to participate in a patient study involving new methods for treating the disorder, such as the patient studies being conducted by Columbia University College of Physicians and Surgeons and the National Institutes of Health. Others simply involve completing a questionnaire. The research, regardless of the method, serve to assist medical researchers in finding better regimes for treating the disorder, and to help them understand the impact the disorder has had on our lives. The Hypoparathyroidism Association has always endorsed the research and encouraged our members to participate. The new study by the Endocrine Oncology group at Harvard Medical School and the Harvard School of Public Health is one such study and only requires the participants to complete an on-line survey which should only take a few minutes to complete. While the survey is geared to surgical onset Hypoparathyroidism, your responses can be important. Please complete the survey by clinking on “HERE” below. Your time will be well spent. James Sanders, President Hypoparathyroidism Association, Inc.
An Invitation to Participate in an Important Medical Survey An Endocrine Oncology research group from Harvard Medical School and Harvard School of Public Health is conducting a study that compares the perceptions of hypoparathyroidism from surgeons and preoperative patients with people who actually live with hypoparathyroidism. The survey asks for your views about your health as an individual with permanent hypoparathyroidism. Your responses will indicate how you feel and how well you are able to do your usual activities. There are 28 questions that should take around 9 minutes to complete, including a series of demographic questions at the end. The information you provide is completely private and completely anonymous. There are no questions that involve identification. To take the survey, you have to click “HERE” . Some of the questions are not phrased perfectly, so please help by marking the one box that best describes your answer. Thank you for your participation. Dan Ruan, M.D. Harvard Medical School
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