HP  is short for Hypo-para-thyroidism  is the least known within the endocrinological field and because of this the National Institute of Health started studies on this very rare disease years ago. To clarify rare let me allow to clarify myself .
 the incidents of what they call [ surgical onset ]  is usually brought on by either removal of the parathyroids or they fail during the removal of the thyroid itself . The thyroid may be removed for  for various reasons from a tumor to cancer . The parathyroids and a common disease of the parathyroids  is HYPER -PARA-THYROIDISM .
http://www.medicinenet.com/parathyroidectomy/article.htm
AS SEEN HERE ON medine.net 

The following explanations were written by Dr. Norman who is an advisor on James
Sanders Organization. Remember Mr. Sanders has a team of Doctors now to confer with . Liz in the UK has an outstanding 502(c) 3 in which she fights for more research on this . NOW..

Karen Winer originally started the studies that is now seen on the shelf known as Forteo , The FDA only approved it however for Osteoporosis and for short term use due to its high rish of bone cancer later on.
I am on Forteo 2 x a day morning and evening . I give myself one shot either in the inside of my thigh or on my belly. -6in  needle and it goes in easier for me. personal preference.I am now on 8 Rocaltrol a day 0.25 mcg  and 2500 mg calcium . I buy the calciul from the health food store it goes in fast when I have tetany and the cramping is outragous . I take magnesium  2 tabs a day and Viatmin D D3 D2 
I am still running a border low ionized calcium  [ blood ]   1.11  not bad for me really .
b ut my total calcium is 9 normal  always remember that most labs vary but are also very close. so at my lab normal is : total blood calcium  8.7 - 10.5  anything over that 10 mark  I am not feeling worth a damn. anything under 8.2 I am starting to feel funny , but it is usually 7.9 or lower that drags me into the hospital for IV calcium carbonate .
Calcium is hard on an IV line even when attached to that pole going in with koolaide I swear ! 1. I always ask with huge eyes "do ya know how to put in a really good IV? My veins are crap , they will roll callapse and they hate calcium"
some believe me and some blow me off .. it is the ones who blow a patient off that are always sorry . the IV line fails , my hand swells up, I burn and complain and one nurse one time told me this " you are not a cancer patient so shut up . You could be much worse!"  true words .
words to the wise .. never compare your patients to other disease .. especially regarding the dying . that is a no compete and really .. a Hypoparathyroid really is miserable once they have gotten to the hospital .. any way I am.I am an Idiopathic I was DX in my 4th decade .. age 40 and was always a hard kid growing up . I had learning disabilities . hard time reading and lousy in math.I need spell check and my health started to decline  about age 11. No one knew why .. no one. I always had one thing or other wrong with me.
I had one nurse at one time try to do a straight push of calcium carbonate into my vein without it attached to saline solution a bag .. I was out of it from a migraine and 7.6 low and suddenly my heart felt weird.. well hell she was killing me. I screamed stop and said I need that attached .. i left that hospital and went to my docs.the nurse almost damn well killed me. her and that doctor did not know how to treat a Hypo parathyroid it was bad.

The doctor I have works for VM and he is the best of the best . He has never worked with an idiopathic . there are plenty of hyper's and on-sets [ that seems bad to me .. yikes ! ] but not someone who is like me and he wants to learn the difference because there is a difference . the treatments so far the same .. but there are some things that have happened to my body that are connected that I need for calcium to absorb .. one is the stomach [ gastric poresis ] the other intestine .. cannot nave one without the other . Will write more soon as further testing is done.

I am going to be changing my Non-Profit  status to exclusively provide information towards Idiopathic Familial Hypohypoparathyroidism and attempt to provide a direction folks can go to seek correct compassionate care and not be confused with thyroid disease.
However  I know and the medical students reading this know this is a major endocrinology illness.

I shall always provide the base information to Mr. Sanders location and to the UK locations but I am no longer associated with them due to differences in our beliefs.

I will be back with what has been going on with the forteo and what might be some side effects using chemo medication for breast cancer,
 see you soon.

I am going to be sending out a formal letter to all physicians in the local states same, exact letter and form. NO HIPA laws shall be broken by this form .


the form and questionaire is asking basic questions


1. In your medical practice how many patients do you treat who are Primary
Hypo-para-thyroidism
 
2. Familial Hypo-Para-thyroidism

3. Psuedo Hypopara-Hypo-parathyroidism


all the physician has to do by each category is put a number of each he has or a zero

I am going to attempt to get this to doctoes this side of the USA first. It will take me some time. IF you would like to help me get doctors list for area at a time , address , stamp and get things sent I would really appreciate your help in volunteering *
remember we are trying to get an idea of numbers on the people who are the rare ones.


thank you , President of Washington State  Division :shawn L Blumenfeld  Hypoparathyroidism

I am looking for actual diagnosed  Primaries ,Familials, Psuedo HP folks
NOT SURGICALLY induced or Trauma induced in any way . 
I am trying to get numbers for the Northwest region, meaning Washington State , Oregon,California and If Alaska wants to pipe in I will be more than happy to take them and put them on my list as well as Canada . I will need
your general location , age , when diagnosed , you do not need to give out name , address.

If you are a parent of a HP child did you or do you have anyone in the family that you know of who has or had HP ? [ this is hard to figure out because of diagnose issue's ]

I am trying to see exactly [ as best as I can] how far apart we are from each other  in distance . I know the closest primary that I am aware of is over 100 miles a way . There are an abundance of surgicals.
Now I am talking RARE . the Primaries  the people born with this diagnosed with this for no /unknown cause or reason.
Please get in contact with me
shawnylou@gmail.com

I am going to attempt to start a news letter just for us  and attempt to see if there are physicians who will do research for us because we are the very rare "breed" { disease ]
Thank you ,and get back with me asap Shawn l Blumenfeld 

idiopathics  are very rare , famililias are the very same 1 out of 100,000 no two ways about this we are very rare .Psuedo paras are so rare their numbers are 1 out of 250,000 this is an issue that needs to be clarified . They should be handled differently and my doctors who have been handling me are clarifying this COMPLETELY! I AGREE and have.

this number is NOT NOT the same for surgical hypo-para-thyroidism , surgically induced by whatever means it happened either surgery or radiation/cancer .car accident  /trauma of some sort ,etc..
this is not rare.
Happens far more [sadly ] than we know of. also it is not uncommon for arm parathyroid  transplants to be done into surgicals and they work. AS a matter of fact they are far more successful right after surgery [ immediate ] than any other surgery.

What is a tragic and  horrible error on the surgical community IS for ignoring the impact HP has on the Cancer community [thyca] when they loose their ability and function of that para hormone.They have ,they do and shame on them [ the surgeons and specialists ]

I am speaking from a research level and being a person who has known many surgical onsets in my area BUT I am the only Primary in my area in which I am aware of.
Another issue is forming a support group in a local area for primaries. Why? because Thyca has a huge group and they take on most of the HP folks in my area because it was caused by their surgerons in the first place. I know 3 lawyers who have HP patients suing their doctors because of Parathyroid removal or damage.
The chances of these patients winning are so slim that would make you weep.

I believe in all sincerity this subject needs to be addressed asap at head quarters and fast . There is a huge difference in numbers and in the support Thyca gets vs. the rare Primaries, Psuedo,Familials..HP's.

We are fortunate to have studies and doctors out there who have done some studies on this disease known as Hypo-para-thyroidism. As we all know we have to look hard on the internet or go to our own [ James Sanders ] who lead us to places like NIH or other hospitals who might be doing a protocal in hopes of finding a solution or answer to help in retaining the parathyroid hormone.
We here do not give answers, instead I provide others articles , web sites and thoughts because that is what we have now. The people who have done studies on this disease have worked hard on their papers and gave as much information that they had at their hands for that time ,OF COURSE some of the matterial is now dated and we are seeing a few improvements as far as probably being able to inject a parahormone similar to that of insulin like a diabetic does. problem right now however is expense .
James has a questionaire going on right now for surgicals and there is a protacal going on at NIH in October 2009 for 8 folks . I do not qualify. I have gastric issues . Look up on their web site and call the folks there regarding what the qualifications are.
We are a very good bunch of folks who fight a good arguement for honor that is sure. The UK chapter amazes me . I read Liz's web all the time. I need to go visit her sometime soon.  James of course is our founder there are no words there. Indiana chapter is always doing something . ALL of us wait and all of us provide what we have in front  of us ,, the knowledge of a doctor or student that hopefully will write a paper taht we can put up on one of our web sites and say "look he/she saved us" I will always put up all their knowledge no matter what .. because they matter and we need them  and we absolutely are the key to whatever is the answer.. so we will wait.

Hi Fellow HPTH'ers
is that how I say that? Ok I need to ask all of you as to how many of you on this exact site are my group .. will you please email me at  shawnylou@gmail.com
when you do this please  tell me you first and last name address and if you are in my branch. I am here in the NW , I am the president of the NW chapter for Hypoparathyroidism so I am simply trying to get this all figured out in numbers and organization.. JOY! confidentiality is mine and NO we do not solicite.. we are a non-profit for a rare disease .. I do not want to sell you a vaccum cleaner's *

thank you and have a great night

Shawn L F. R. B.
Washington State Chapter  President
shawnylou@gmail.com

www.hpth.org.uk

Go to the UK site  for information on the work they are doing and what studies are happening in the UK.

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

Please email me  and tell me of any new information from your state /province /territory or country on anything you might have heard on any new Protocols that might be beginning in your area or comments you may have, questions ,ideas .

shawnylou@gmail.com

do not forget that James Sanders and Carol Sanders in Idaho have been going through a very hard year with health in their home . carol has been in and out of the hospital . Send Carol good thoughts ,well being,love and many of gods blessings. Carol has supported James through the organization since it inception and she has stood by this disease and her children and learned so much about it,I admire Carol Sanders. She has all 5 adult boys with Familial HPTH and her wonderful Husband who of course has this and as a whole unit they have worked together to find solutions hope and did not sit back to allow this to defeat them.If it had not been for James Sanders in starting the Organization in Idaho Falls ID none of us would have found each other , especially the primaries and familial.

The life of Halla Ruth has been followed since she was a little girl and now her mother has her own None profit organization as Halla grew up and is alive and smiling vibrantly ; because of James .. he made it all possible to bring that story to my heart so I could read that very article when I signed on to his chapter his home base in which I call the MOTHER SHIP.

So here is to James and to Carol . love and many blessings GET WELL SOON CAROL * The lady who stood by the huge mountain and showed many none HPTH folks how to climb it.

Thank you .Shawn L. Blumenfeld /PRESIDENT

HPTH  WASHINGTON STATE