Panhypopituitarism is a rare disorder characterized by the decreased secretion of hormones from the pituitary gland.
Any guys who have had children after being diagnosed? I have been trying to conceive with my wife and to no avail. I am seeking alternative treatment possibilities. Any advise? Chris
Anyone else here have the autoimmune version of panhypopituitarism?
While the diagnosis can be scary, the good news is this disorder is pretty manageable! I was diagnosed as a child, and I am 24 years old now. With hormone replacement therapy and routine check-ups with my endocrinologist, I've got it pretty well under control. I used to take Human Growth Hormone shots when I was little, but gave up on it. It was helping me a lot, but I was just a kid... and needles suck. Now, after so many years of not taking the injections, my health has declined enough that I decided to suck it up and get back on the regimen at the start of the new year. (I'm changing insurance companies, so I'll have to wait for the transfer to be completed.) Anyway, I decided that I should reach out and talk to some other people with my disorder, or parents of children who have been diagnosed. I'm no expert, but I can help ease your worries by sharing my experiences with you. As long as you can get treatment, panhypopituitarism is something you can live with. :) I'm going to start a video series explaining what I can about my experiences with this on YouTube here: https://www.youtube.com/user/NekoNoNyaan/videos I hope this helps somebody. ^^ I dis notice that this forum is essentially dead, but I came across it and I'm hoping others will, too! Let's get the conversation rolling again!
Hello! I'm new, but I hope I can help bring this forum back to life.
Hi Nancy I'm still here. Nice to hear from you. I'm okay. I hope you're doing well too.
I was wondering if anyone was still following this site anymore. Its been at least a year since I've been here. Hope you are all well. Nancy
I'm just trying to find more people. Sometime is good to reach out to others with Panhypopituitarism. It's hard because we all have the same condition, but in a way we're all different.
Hi Nancy Nice job. Hopefully I'll able to join you. Thank you for sharing. Be well.
Hi Everyone, Long time no see. I didn't know If I have ever mentioned this, but I have a facebook page dedicated to Panhypopituitarism. I wasn't sure if anyone was interested in getting updates from me, but the page www,facebook.com/panhypopituitarism Hope all is well, Nancy
Hi Jedwards I’m glad you responded. At least I know I’m not alone. I’m a bit scared with my condition now. I now write in my journal when I start with new bottle. I didn’t know about it being a vasoconstrictor. My endo never mention about it, even though I’ve been seeing them for many years. Wonder whether they know about this. On my last visit to endo recently, I asked her about this non-functioning thing. She said it’s okay to take extra doses if I need it. If symptoms worsening while I’m taking the extra doses, she asked me to call them. Thank you again.
Rose, Unfortunately, I have the same problem. I had a pituitary apoplexy in 2009 with secondary panhypopituitarism & diabetes Insipidus. Long story short...I was started on Desmopressin nasal spra, one spray each nostril before bed. This worked for a while and my body adapted and required more and more. Now, I am taking both the nasal spray ( 2 sprays each nostril in the morning and before bed) and oral Desmopressin morning and night. My Endocrinologist reports I have doubled the recommended dose and that for some individuals the body just metabolizes this medication more rapidly than others making it less effective. Unfortunately, since this is a vasoconstrictor...the medication is also dangerous...too much can constrict the blood vessels in the the major organs such as the heart and kidneys resulting in a greater of two evils: heart or kidney failure versus dehydration from the diabetes Insipidus.
Hi Nancy Ddavp is hormone made (synthetic) to replace natural hormone ADH. Also known as minirin. It is to replace vasopressin, the hormone to control urine. My body cannot contain water, no matter how much I drink. If not treated, we will have severe dehydration problem because all of the water will be passed out through urine. Extreme thirst and extreme urination are the symptoms. This disease is called Diabetes Insipidus. It caused either by pituitary failure or kidney failure ie the kidney fail to response to ADH hormone produced by the pituitary. I assume your pit still produce ADH. Is it?
Hi- Thank you for the reply back. I am currently working on this with my website guru lol. I added buddy press to my wordpress site. and now I just need to create sub pages. But until I do that you can go and check my facebook page out dedicated to panhypopituitarism. If you go to www.facebook.com/panhypopituitarism then I can update you more as I get it up and running 100% Thank you, Nancy
Hi Nancy, I am delighted that you created a website dedicated to panhypopituitarism. Many thanks for your great work! Unfortunately, I have not yet managed to access it, irrespective of which browser I use or which firewall settings I choose. To help me solve this problem would you please let me know if the site is up and running and freely accessible. If yes, then I really need to investigate more deeply where the problem in my setup lies. My browsers consistently return a 'server not found' message. Many thanks for any help you can offer. Best, BB
Hi Nancy, Congratulations on your internship. You gonna be a Certified Life Coach ! Tks for sharing. Best wishes.
Hi everyone. I've been a part of Rare Share for awhile now and I wanted to let you know that I am in training to be a Certified Life Coach. In the beginning of November I will be doing an internship where I will be able to coach 3 clients for free, for a period of 8 weeks. All I would need from you would be a testimonial at the end. So if you are having trouble getting your goals in order please feel free to email me at Nancy-Hill@live.com. I'm looking to hearing from you. Have a great week.
Hi Halee-- I think it depends on the person. I have been on Both pills, but have been on Hydrocortisone most of my life. You have to be careful with hydrocortisone, like most other steroids. If you're on too much It can cause mood swings and your mind can get in a fog, where you can't focus, and it can cause weight gain, like prendisone. You're active, so you shouldn't have many problems with that. I also had problems where I couldn't feel my fingers or toes. They were extremely cold and if I touched my niece or nephew they cry when they were babies. On Prendisone it was kind of different. I actually lost a ton of weight from being on it and if I forgot it for one day I my lips went numb and I wouldn't feel right. Prendisone almost killed me once, while I was visiting my dad in Vegas. Hydrocortisone works, but if you have any of those problems go see your doctor right away or trust yourself and lower your dose yourself. Have a great day! Nancy
hi everyone, i was just wondering what cortisol replacement most people are on and what works the best for them. I'm on 10mg of prednisone and i'm trying to run cross country. At the begining i was doing ok, but lately i've been having very low energy and basic low cortisol symptoms. It seems like i have a very long recovery and when i go back to run again, i repeate the cycle of run a few days, feel sick a week or more, run a few days (if i'm lucky), and so on. I'm starting to think that Hydrocortisone would be best or a mix between the 2. Just please reply, any info helps. Also if there's any athletes out there, i'd like to know how you manage everything. btw: my endo is a strong believer in prednisone, but from my research HC is best expecially for athletes.
hello, im 26 been off my hormones for 9 years because of insurance reasons and money. i though i felt fine and normal until i did some research. all the side affects are all me....it scares me. now im going to see a specialist next month in orlando. my life will change for the better. my mother told me that i dont know what life is when you cant live it! maybe oneday my life will turn on.
Hi Lost One-- What a great story. I have also been living with Panhypopituitarism since I was 10 days old which was 31 years ago. I don't call it a disease I call it a condition because we don't suffer like people with Cancer or other diseases. We can live a healthy normal life all we have to do is take some medication on a daily basis. That's it. They haven't found a way to put a new pituitary gland in our system. That's really the only thing that is wrong with all of us. Which they can't because that's a very sensitive area of the brain and we'll never get that chance, and if I was told they found a way for it all to go away I wouldn't take that chance. I went through a similar situation like you did last year. I thought I was immune to the medication and I was essentially healed. Boy was I wrong. I was getting migraines and having many other problems. Slow heart beat constipation etc,,, I completely got off my Synthroid, Cortisone, and other medications and Said I don't need this! 3 months later I was at my house and half dead on the ground in my living room. Thank God that my cousin found me or I would've been dead, If you were getting migraines and all that you were probably on too much. Have your doctor check your levels and enjoy your life with Panhypopituitarism. Feel free to email me at firstname.lastname@example.org. I'd be more than happy to talk to you more :)
Hi all, Havent told my story much and I think its time. At age 10 i was diagnosed with panhypopat. also Human growth hormone defencency and Hypo Thyroidism. Took real growth hormone shots, cortozone and synthriod. I was only 1 of 5000 people in usa that had it and 3 years later i broke world record growing 16 inches in 1 year. At age 16 There were bad batch of hgh's and people were getting a form of krydsfelt jakob disease and they stoped producing it. They said incubation period could be up to 20 years so untill i hit 36 years old i was always woried now and then if i would get it. At age 21 My body was growing immune to the meds. They were giving me migranes and it was time to stop taking it unless my levels went dangerously low. People with this disease take longer to heal. When sick it always took me longer to feel better. From 1992 to presnt i went through many jobs. I was always the great fast worker but to sick to much.. In 2008 My body collapsed. Was not generating enough electrolytes and energy crashed to an all time low. I became the first known person ever To File for Social Security Disability with this condition and it was a fight. After 3 years I won that fight and now am on SSD. To all the people behind me now 50,000 people in usa. Younger then me, I have a message for you. I understand your pain. I understand the lack of energy and geting sick easy and what it takes out of you. Just never give up hope that some day they will actually look into researching this disease and fight it . Always have hope.
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Created by LostOne | Last updated 29 Aug 2011, 03:44 PM
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