Re: Panhypopituitarism and Early Death
--- New Message on Pituitary Chat --- From: Willard1H Message 26 in Discussion I had to check Wikipedia to even find out what panhypopituitarism is. Even Wikipedia only has an entry for hypopituitarism, which it says is very rare. The pan- kind must be even more rare.There's a web page for The MAGIC Foundation, which says it is the world's largest organization for growth related disorders. Incorporated in 1989, it seems to focus mainly on children with PanPit. One can download PanPit pdf and browse pages by the mom of such a child. Also featured are sections on both panhypopituitarism and hypopituitarism. The site seems to have dozens of other categories, many of interest to us. They discuss hypothyrodism (hey, I've got that!). Topics cover much more than just subjects of interest to those of short stature. --- To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. http://groups.msn.com/PituitaryChat/_emailsettings.msnw Need help? If you've forgotten your password, please go to Passport Member Services. http://groups.msn.com/_passportredir.msnw?ppmprop=help For other questions or feedback, go to our Contact Us page. http://groups.msn.com/contact If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. mailto:[EMAIL PROTECTED]
Re: Panhypopituitarism and Early Death
--- New Message on Pituitary Chat --- From: cat Message 22 in Discussion I sill have my tumor even tho I had surgery and radiation..I think a lot of it has to do with the dosage the Dr puts you on...My Dr started me high which made my gh too high and then went lower as I started having all kinds of problems. My GH was practacly non existent then with what should have been a normal dose to start with made it jump way high...So in my opinon that could give it a chance to start growing again...No real proof yet either way tho :( Cat --- To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. http://groups.msn.com/PituitaryChat/_emailsettings.msnw Need help? If you've forgotten your password, please go to Passport Member Services. http://groups.msn.com/_passportredir.msnw?ppmprop=help For other questions or feedback, go to our Contact Us page. http://groups.msn.com/contact If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. mailto:[EMAIL PROTECTED]
Re: Panhypopituitarism and Early Death
--- New Message on Pituitary Chat --- From: Iris Message 21 in Discussion Yeah, I was told also that GH can make things grow. After my pit tumor resection, the doctors found another mass near the top of my head. I doctor who works with my godsister told me I probably should not take GH since that has been detected. Iris --- To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. http://groups.msn.com/PituitaryChat/_emailsettings.msnw Need help? If you've forgotten your password, please go to Passport Member Services. http://groups.msn.com/_passportredir.msnw?ppmprop=help For other questions or feedback, go to our Contact Us page. http://groups.msn.com/contact If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. mailto:[EMAIL PROTECTED]
Re: Panhypopituitarism and Early Death
--- New Message on Pituitary Chat --- From: liltrubin Message 20 in Discussion I have heard of it and personally I think it is a bunch of hog wash and here is why. If you do not have enough GH and you are replacing it to be "normal" then you should function at a normal level. If you are "normal" and you add too much of good thing then everything can go nutty! It is a really simple concept. I was on GH for awhile and my tumor did not grow at all during or after that time. I do not think there is anything wrong with getting your hormone that are low into a normal range and believe me I had a lot that were not normal. GH does not normally go back to normal if deficient before surgery after surgery but mine did!!! I got lucky on that one and I know it GH is a personal choice. I am just glad that we can all make that choice People that abuse GH screw it up for those of us who really need it! HUGS, Tina On Feb 8, 2008 3:26 AM, Aussie_Lil <[EMAIL PROTECTED]> wrote: New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 18 in Discussion From: Aussie_Lil Hello again I have never taken GH and my endo tells me that he doesnt like it as it can make verything grow... Cancer etc. has anyone else heard of this? View other groups in this category. To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from Pituitary Chat. --- To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. http://groups.msn.com/PituitaryChat/_emailsettings.msnw Need help? If you've forgotten your password, please go to Passport Member Services. http://groups.msn.com/_passportredir.msnw?ppmprop=help For other questions or feedback, go to our Contact Us page. http://groups.msn.com/contact If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. mailto:[EMAIL PROTECTED]
Re: Panhypopituitarism and Early Death
--- New Message on Pituitary Chat --- From: cat Message 19 in Discussion I am taking GH shots for about a year . Had lots of side effects but now that my dosage is lower (started at .6 and now @ .3) I have been doing better . My energy level and strength , balance a little better and started to loose weight. The past few weeks tho I have been feeling weaker and more like I felt before..I'm thinking maybe the dose needs to go up.1 now that my body is use to it..dont know. Cat --- To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. http://groups.msn.com/PituitaryChat/_emailsettings.msnw Need help? If you've forgotten your password, please go to Passport Member Services. http://groups.msn.com/_passportredir.msnw?ppmprop=help For other questions or feedback, go to our Contact Us page. http://groups.msn.com/contact If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. mailto:[EMAIL PROTECTED]
Re: Panhypopituitarism and Early Death
--- New Message on Pituitary Chat --- From: Aussie_Lil Message 18 in Discussion Hello again I have never taken GH and my endo tells me that he doesnt like it as it can make verything grow... Cancer etc. has anyone else heard of this? --- To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. http://groups.msn.com/PituitaryChat/_emailsettings.msnw Need help? If you've forgotten your password, please go to Passport Member Services. http://groups.msn.com/_passportredir.msnw?ppmprop=help For other questions or feedback, go to our Contact Us page. http://groups.msn.com/contact If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. mailto:[EMAIL PROTECTED]
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 12 in Discussion From: MinnieChat Hi Grampas, I forwarded your post to Charlie! She's been so busy, she missed your post! I just wanted to thank you so much for sharing your post, and offering to share your time and your ear. " People say I am a good listener so if their is a need for any of you to vent your feelings and frustrations or to seek prayer support renenber where you can find me .. under the screen name, Gampa60 or my email addresss with Yahoo and AOL, [EMAIL PROTECTED] and [EMAIL PROTECTED]. Helping people as a good listener is actually a tonic for me." Many blessing to you, and thank you so much for stopping by to say hello! Minnie View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from Pituitary Chat.
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 11 in Discussion From: Grampas60 Hi Folks I am writing inquiring about the next chapter in Charlie's story and her recent surgery for an adenoma related tumor. Her very positive message with reference to her return to work in a demanding nursing career after two operations and her positive approach to her current situation should not be overlooked, I was married with three small children, the fourth having passed away in October, 1973 when I experienced loss of peripheral vision, hearing, and mobility in early January, 1974. My supervisory position with Health and Welfare Canada - Incoime Securities Program was taken on by someone else, we had to look for help from outside to operate MacCallum's Fishing Tackle Service Centre, The Trading Post and the Universal Bookkeeping and Accounting Services franchise for Eastern Ontario and Western Quebec as I lay in that hospital bed or sat up in a chair, wasting away for the first six months of 1974. I was totally disabled, my wife was destraught with the death of our first born daughter, Theresa Anne, born with spinal bifida and cystic fibrosis and I was gradually becoming a vegetable, everyone lost as to the reason for my losd of vision, hearing, mobility and health. Everyone was at a loss as to what to do with me when the staff at the Royal Ottawa Hospital, Ottawa, told my wife that I was being discharged from the hospital to her care the last week of June, 1974. Rather than going home to my wife and three young children, Mary Colleen, 6, Raymond, 4, and Phillip, 2, my parents and grandparents invited us to go up to their cottage, where it was felt that between the three of them, all nurses by trade, they could care for me until an answer presented itself. My wife, Mary Louise opted to flee the marriage and my battle with life, keeping the children out of my life through July 28, 1978, when she lost her battle with cancer. In the interim, Dr Embre, a next door neighbour on Grande Lake heard about my situaion, arranging for me to be admitted into the Ottawa Civic Hospital over the Canada Day Weekend, (July 1, 1974) , surgery being commenced around 7 am July 6, 1974 for the removal of a pituiatary adenoma.and a second tumor, not identified until into the surgery, an acoustic neuroma. I gradually regained my hearing, vision and equiplbrium over a period of about a year but to my dismay, Health and Welfare Canada and the Public Service of Canada would not allow me to return to work in an accounting situtation where I would be enhaiing fumes from such toxics as correcting fluids, inks from ballpoint pens, magic markers and specially treated carbonless papers. I was not so much of an invalid though that my doctors would stand in my way as I accepted a calling from God to dedicate my life to Him, commencing my studies towards my Bachelor of Theololgy, specializing in Volunteer Administration. I think that the experience I had leading up to my surgery in 1974, then the deaths of my wife, July 28, 1978, mom's parents, October 17, 1978 and dad, November 19, 1978 should have been enough to kncok me down completely but . our family had God with us, uniting mom, the children and I in a way that would not otherwise have been possible. I completed my Bachelor of Theology in Volunteer Administration in the spring of 1979, a miracle in the eyes of all who had cared for me before and aftert my surgery of July 1974. In June, 1983, I completed my Master of Christian Education, specializing in Communicative Arts while at the same time working part-time in an Administrative Services 4 position with Health and Welfare Canada: Health Protection Branch My studies towards my Doctorate of Christian Education, as well as my career in the federal government came crashing to a hault February 16, 1984 when I slipped on black ice, on the NCC Pathway, leading to the Regional Municipality of Ottawa Carleton's Rapid Transit Station serving the Northwest section of the Nation's Capital. I was the 7th of 8 victims to fall on the stretch of black ice, between the hours of 6 pm, February 15, 1984 and 7 am, Feburary 16, 1984, when I went down. I will conclude by sharing the fact that 31 years after my initial surgery, July 6, 1974, I have retired to a retirement home in Owen Sound, Ontario, knowing that Gpd had and has a plan for me. It is just 21 years since my fall on the black ice left me with a Class III separation of my right shoulder, a compund fracture of my
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 10 in Discussion From: MinnieChat Actually, another concern is Adrenal Insufficiency with Panhypopituitarism, as without adrenal corticosteriods, the body cannot respond to stress and death could happen. I found this discussion about GH deficiency in children: III. PEDIATRICS Growth Hormone Deficiency and Risk of Death Growth hormone deficiency results from a failure of the pituitary gland to make sufficient amounts of the hormone. Individuals who lack growth hormone are abnormally short. Growth hormone is also needed to maintain normal blood sugar and its absence may result in potentially fatal drops in blood sugar (hypoglycemia). According to the 1994 Utah Growth Hormone Study, growth hormone deficiency occurs in 1 out of every 3,480 children. Patients who can't make their own growth hormone may also lack other hormones produced by the pituitary, including the hormone that regulates the adrenal glands. The adrenals, located atop the kidneys, secrete cortisol, a hormone that protects the body in stressful situations. In times of illness or other stress, individuals who lack adrenal hormones are subject to an adrenal crisis - a potentially fatal loss of salts and fluids. However, an adrenal crisis can be treated and sometimes prevented with the drug hydrocortisone. In addition to those whose pituitaries fail to make the proper hormone to regulate the adrenal glands, adrenal crisis may also result from other medical conditions. While it is known that patients who received pituitary-derived growth hormone (GH) are at excess risk of mortality from Creutzfeldt-Jakob disease, it is not known if these same patients were at increased risk of death from other conditions, particularly preventable conditions.Note... Creutzfeldt-Jakob disease was a threat when GH was processed from GH from cadavers. The GH sources that we receive now is recombinant GH. As a result, a study, published in the Journal of Pediatrics (2004;144:430-435), followed a cohort (N=6,107) from known US pituitary-derived GH recipients, who were treated between 1963 and 1985. Deaths were identified by reports from physicians and parents and the National Death Index. Rates were compared with the expected rates for the US population standardized for race, age, and gender. Results of the study showed that over the course of the observation period (1963-1996), there were 433 deaths. Based on epidemiological data, there should have been 114 deaths (relative risk [RR], 3.8; P<.0001). Risk was increased in subjects with GH deficiency caused by any tumor (RR, 10.4; P<.0001). Surprisingly, subjects with hypoglycemia treated within the first 6 months of life were at extremely high risk (RR, 18.3; P<.0001), as were all subjects with adrenal insufficiency (RR, 7.1; P<.0001). A quarter of all deaths were sudden and unexpected. Of the 26 cases of Creutzfeldt-Jakob disease, four cases have died since 2000. According to the authors, the death rate in pituitary-derived GH recipients was almost four times the expected rate. It should be clearly noted that replacing pituitary-derived GH with recombinant GH has only eliminated the risk of Creutzfeldt-Jakob disease and that hypoglycemia and adrenal insufficiency accounted for far more mortality than Creutzfeldt-Jakob disease. The authors added that the large number of potentially preventable deaths in patients with adrenal insufficiency and hypoglycemia underscores the importance of early intervention when infection occurs in patients with adrenal insufficiency, and aggressive treatment of panhypopituitarism. Reference Link For adults, there is alot of information out there on the benefits of Human Growth Hormone Replacement. I encourage you to research and discuss with your doctor. It is true that insurance companies give patients alot of grief with medically necessary GH. You may seek out programs directly from the manufacturer, research studies, and may become your own best advocate for insurance reimbursement.Interesting topic! View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services.
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 9 in Discussion From: MinnieChat Oh, I forgot! Silly me... also meant to thank Charlie for telling her story here. I think it is really great to hear successful pituitary neurosurgery stories. It is so important to be seen and treated by experts in this field. Success stories give us alot of encouragement! Thanks so much Charlie , and we will have you in our thoughts next week while you are having surgery for your adrenal tumor. Big hugs! Minnie View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from Pituitary Chat.
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 8 in Discussion From: MinnieChat Just wanted everyone to know that Charlie will be having her adrenal tumor removed Jan 11th. Please keep her in your thoughts and prayers! Minnie View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from Pituitary Chat.
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 7 in Discussion From: JonasB74 I have started to take GH as an adult in 1997. It was approved for adults in the US in 1996.I run a survey once a year on Adult Growth Hormone Deficiency (AGHD) and provide results in MAGIC STAR newsletter and online. To fill out the new survey, stop by the site:http://jonasbilenas.com/aghdsurvey05.htmYou can fill it out even if you are not taking GH.Jonas View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from Pituitary Chat.
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 6 in Discussion From: 53Lawana Charlie, I do wish you luck with your surgery. If they just take one will you have to be on any medication? What is a null cell pit tumor? I really don't think they did any kind of pathology report on mine except to tell about the fragments they found in it. I have been on the growth hormone 9 weeks and so far not much I can tell. The strange thing with me is I will be sick all day and be in bed but late at night I fell alot better, not much nauesa or weird fellings. I am curious to know if my cholestrol has gone down or not. My heart doctor told me a year ago that a pituitary tumor had nothing to do with cholestrol. He needs to read what I have read. Good luck on your surgery. Thinking of you, Lawana View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from Pituitary Chat.
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 4 in Discussion From: 53Lawana Jean, I can vouch for the high lipid levels. I have had my second heart stint put in where the old one in 2001 did not take. I am now on GH but only for 9 weeks now and I cannot tell a difference in the way I feel. I am very sick and in bed most of the time but the worse is the nauesa. The last endo said he could not make me feel any better so I will have to find another doctor, just to keep taking the GH. Lawana View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from Pituitary Chat.
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 3 in Discussion From: tumorout2000 I started taking GH about 2 years ago for a mutitude of reasons. The main one for me was my mental confusion. I read a message on another bulletin board that said that GH can help (for those who are not at a normal level of GH for an adult). In addition, I had read that adults who do not have a normal GH level suffer from higher lipid levels which can lead to premature death due to cardiovascular problems. In my case my lipid levels dropped from above average to below average once on GH. The help to my mental skills was amazing, I am disabled without GH. Jean in Oregon (58 yrs) View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from Pituitary Chat.
Re: Panhypopituitarism and Early Death
New Message on Pituitary Chat Panhypopituitarism and Early Death Reply Reply to Sender Recommend Message 2 in Discussion From: basekid Well im ony 16 but im definitly going to take growth hormone when im an adult. I asked my docter about it and he said it will be no problem taking it as an adult, and the insurance is covering it. View other groups in this category. Also on MSN:Start Chatting | Listen to Music | House & Home | Try Online Dating | Daily Horoscopes To stop getting this e-mail, or change how often it arrives, go to your E-mail Settings. Need help? If you've forgotten your password, please go to Passport Member Services. For other questions or feedback, go to our Contact Us page. If you do not want to receive future e-mail from this MSN group, or if you received this message by mistake, please click the "Remove" link below. On the pre-addressed e-mail message that opens, simply click "Send". Your e-mail address will be deleted from this group's mailing list. Remove my e-mail address from Pituitary Chat.
