Panhypopituitarism
What is Panhypopituitarism?
Panhypopituitarism refers to the reduced secretion of all hormones produced by the anterior pituitary. The pituitary gland is a small organ in the brain, sitting behind the bridge of the nose. It releases different hormones that regulate many essential bodily activities by regulating the release of other hormones. A hormone is a messenger chemical that is released by a gland into the blood, travels to a target organ through the bloodstream, and affects the functional activity of that organ.
The pituitary gland is made up of an anterior and a posterior part. Another organ, the hypothalamus, controls the secretion of pituitary hormones through a process known as the negative feedback loop. The pituitary hormones are released directly into the blood. The hypothalamus has sensors that detect the level of pituitary hormones in the blood. If the level of pituitary hormones in the blood rises above normal levels, the hypothalamus inhibits their release until they reach normal levels. Below normal, the hypothalamus promotes their release to bring their levels back to normal.
The anterior pituitary hormones have an important function as they regulate the levels of other hormones by other glands. Important anterior pituitary hormones include growth hormone, thyroid stimulating hormone, adrenocorticotropic hormone, luteinizing hormone, follicle-stimulating hormone, and prolactin. The growth hormone (GH) acts on many cells and organs to promote bone and muscle growth and regulate fat, protein, and carbohydrate metabolism. Thyroid-stimulating hormone (TSH) signals the thyroid gland in the neck to release thyroid hormones which regulate the body’s metabolic rate. Adrenocorticotropic hormone (ACTH) signals the adrenal glands, located on top of the kidneys, to produce cortisol which regulates body’s response to stress. Luteinizing hormones (LH) and follicle stimulating hormones (FSH) act on the reproductive organs (ovaries and testes) to produce hormones (e.g. estrogen, progesterone, and testosterone) that regulate the reproductive processes in the body. Prolactin is the hormone that signals the breasts to produce milk in females.
Panhypopituitarism is a complete deficiency of anterior pituitary hormones. It can be due to a variety of causes that may be acquired or present at birth. The deficient hormones need to be replaced to maintain normal body function.
Synonyms
- PH
- PHP
Panhypopituitarism refers to the reduced secretion of all hormones produced by the anterior pituitary. The pituitary gland is a small organ in the brain, sitting behind the bridge of the nose. It releases different hormones that regulate many essential bodily activities by regulating the release of other hormones. A hormone is a messenger chemical that is released by a gland into the blood, travels to a target organ through the bloodstream, and affects the functional activity of that organ.
The pituitary gland is made up of an anterior and a posterior part. Another organ, the hypothalamus, controls the secretion of pituitary hormones through a process known as the negative feedback loop. The pituitary hormones are released directly into the blood. The hypothalamus has sensors that detect the level of pituitary hormones in the blood. If the level of pituitary hormones in the blood rises above normal levels, the hypothalamus inhibits their release until they reach normal levels. Below normal, the hypothalamus promotes their release to bring their levels back to normal.
The anterior pituitary hormones have an important function as they regulate the levels of other hormones by other glands. Important anterior pituitary hormones include growth hormone, thyroid stimulating hormone, adrenocorticotropic hormone, luteinizing hormone, follicle-stimulating hormone, and prolactin. The growth hormone (GH) acts on many cells and organs to promote bone and muscle growth and regulate fat, protein, and carbohydrate metabolism. Thyroid-stimulating hormone (TSH) signals the thyroid gland in the neck to release thyroid hormones which regulate the body’s metabolic rate. Adrenocorticotropic hormone (ACTH) signals the adrenal glands, located on top of the kidneys, to produce cortisol which regulates body’s response to stress. Luteinizing hormones (LH) and follicle stimulating hormones (FSH) act on the reproductive organs (ovaries and testes) to produce hormones (e.g. estrogen, progesterone, and testosterone) that regulate the reproductive processes in the body. Prolactin is the hormone that signals the breasts to produce milk in females.
Panhypopituitarism is a complete deficiency of anterior pituitary hormones. It can be due to a variety of causes that may be acquired or present at birth. The deficient hormones need to be replaced to maintain normal body function.
A rare disorder, panhypopituitarism affects fewer than 200,000 patients in the United States according to the National Institutes of Health.
| Name | Abbreviation |
|---|---|
| PH | PH |
| PHP | PHP |
Panhypopituitarism can result from an abnormality of the hypothalamus or the pituitary gland itself. It may also be present at birth as a congenital condition or may be acquired during the individual’s lifetime.
Empty Sella syndrome is a rare condition where the pituitary gland shrinks due to trauma, radiation, congenital abnormality of the structures surrounding the pituitary gland, etc. In some cases, the cause of the empty sella syndrome cannot be determined.
Sheehan syndrome is a condition that can arise in women who give birth. Large amounts of blood loss during childbirth can reduce the blood supply to the pituitary gland and damages this essential organ. Other conditions that reduce the blood supply to the pituitary gland can also lead to panhypopituitarism such as stroke and tumors that press on blood vessels that feed the pituitary gland.
Other causes of panhypopituitarism are infections of the pituitary gland or the brain or autoimmune conditions in which the body’s immune system attacks the pituitary. In some individuals who received radiation or surgery to treat a previous tumor, the pituitary may shrink leading to hormonal deficiencies. Surgeries to remove a cancerous pituitary gland or trauma to the brain can also damage the pituitary. Trauma to the hypothalamus, stroke, and tumors of the hypothalamus can also lead to panhypopituitarism when the hypothalamus cannot stimulate the release of pituitary hormones. Sometimes the exact cause of panhypopituitarism remains unknown.
Each of the pituitary hormones has essential functions. The deficiency of each of these hormones is associated with certain symptoms.
The deficiency of ACTH results in the deficiency of cortisol which is produced by the adrenal glands. Cortisol deficiency results in low blood sugar levels, racing heart (palpitation), nervousness, shakiness, weight loss, excessive sweating, hunger, pale skin, and visual impairment. In addition, individuals with low cortisol levels are more susceptible to infections.
TSH deficiency is associated with fatigue, cold sensitivity, loss of appetite, constipation, decreased heart rate, and blood pressure, dry skin, coarse hair, hair loss, and weight gain.
Growth hormone deficiency in adults leads to anxiety and depression, social isolation, fatigue, weakness, obesity around the waist, difficulty concentrating, and forgetfulness. Children experience slowed growth and short stature, slow hair and tooth growth, and increased fat around the face and the stomach.
FSH and LH deficiency exhibit different symptoms in men and women. In men, it results in erectile dysfunction, decreased body and facial hair growth, and fatigue. In women, it leads to menstrual irregularities or the complete absence of menstruation, and hot flashes. Both men and women experience infertility and decreased sex drive. In children, it results in delayed puberty.
The only symptoms associated with prolactin deficiency is the inability of women to produce milk after childbirth. Sometimes, there are additional symptoms present due to the main cause of panhypopituitarism. For example, if panhypopituitarism is caused by a tumor, the tumor may press the visual nerves and cause visual impairment and headaches.
The diagnosis of panhypopituitarism is based on clinical findings and low levels of pituitary hormones. Generally, a combination of low pituitary hormones and low levels of the hormones from their target glands indicate panhypopituitarism. For a panhypopituitarism diagnosis to be made, all anterior pituitary hormones must be deficient. Once the diagnosis is made, further imaging techniques are required to determine the cause of panhypopituitarism. Hormonal investigation is also required to determine if the deficiency is from the hypothalamus or the pituitary gland.
To diagnosis panhypopituitarism, blood tests are done to measure the levels of pituitary hormones in the blood. In addition, pituitary hormones act to regulate the hormones produced by their target organs. Thus, the levels of the target hormones must also be measured. Basal testing measures hormonal levels in the blood under normal conditions. However, certain pituitary hormones vary in concentration depending on the time of the day. In such cases, basal testing may not provide sufficient testing and dynamic tests may be required. In dynamic tests, the blood concentration of a hormone is first measured. Then, a substance that normally raises the concentration of that hormone is injected. After the injection of the stimulating substance, the hormone concentration is measured again. Hormone deficiency is confirmed if the hormone concentration does not increase as expected.
Basal testing of prolactin, TSH, LH, and FSH is usually sufficient. ACTH and GH require dynamic testing. Insulin tolerance test is a dynamic test that detects both GH and ACTH deficiency. Individuals are asked to fast overnight. A blood sample is first taken and insulin is injected. Insulin promotes the absorption of blood sugar into the cells. This decreases the blood sugar levels and triggers the body to respond and raise the blood sugar levels to normal. In unaffected individuals, ACTH and GH levels increase. If ACTH and GH levels do not rise, deficiency is confirmed.
Once panhypopituitarism is confirmed, imaging studies identify the underlying cause such as tumors. A magnetic resonance imaging (MRI) is used more commonly than a computed tomography (CT) scan. If a genetic cause is suspected, genetic testing can be performed.
The goals of treatment of panhypopituitarism are to treat the underlying cause when possible, replace the deficient hormones, and address other complications that arise as a result of hormonal pituitarism. The initial step in treatment is to identify and treat the underlying cause. For example, if the condition is due to the presence of tumor, the tumor needs to be treated.
Most affected individuals also receive hormone replacement therapy. The hormones produced by pituitary target organs can be replaced medically. This improves the symptoms associated with pituitary hormone deficiency.
Finally, complications can arise from hormonal deficiency. For example, low LH and FSH levels leads to low levels of sex hormones which may cause osteoporosis. Hormone replacement therapy and the treatment of the underlying cause can improve this risk. However, these complications often need to be treated directly.
If the cause of panhypopituitarism can be identified and completely reversed, the life expectancy and quality of life is not affected significantly. If the underlying caused remains unknown or cannot be reversed, hormonal therapy is often effective in restoring normal hormone levels. However, the quality of life is often reduced due to physical and psychological challenges. In such cases, lifelong hormonal therapy is also burdensome.
Gounden V, Jialal I. Hypopituitarism (Panhypopituitarism). In: StatPearls. Treasure Island (FL): StatPearls Publishing; 2019. Available from: https://www.ncbi.nlm.nih.gov/books/NBK470414
Mitchell-Brown F. Managing panhypopituitarism in adults. Nursing. 2017;47(12):26-31. Doi 10.1097/01.NURSE.0000526883.02682.22
Castillo A, Zantut-Wittmann D, Neto A, Jales R, Garmes H. Panhypopituitarism Without GH Replacement: About Insulin Sensitivity, CRP Levels, and Metabolic Syndrome.Hormone and Metabolic Research. 2018; 50(9):690-695. doi: 10.1055/a-0649-801
Last updated 4 Sep 2023, 05:39 PM
30 Dec 2014, 07:51 AM
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!
Last updated 20 Apr 2016, 03:45 PM
20 Apr 2016, 03:45 PM
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
Last updated 26 Oct 2015, 06:24 PM
26 Oct 2015, 06:24 PM
Anyone else here have the autoimmune version of panhypopituitarism?
Last updated 30 Dec 2014, 07:42 AM
30 Dec 2014, 07:42 AM
Hello! I'm new, but I hope I can help bring this forum back to life.
22 Jun 2014, 12:28 AM
Hi Nancy I'm still here. Nice to hear from you. I'm okay. I hope you're doing well too.
21 Jun 2014, 01:52 AM
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
Last updated 10 May 2012, 03:37 PM
10 May 2012, 03:37 PM
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.
10 May 2012, 02:07 PM
Hi Nancy Nice job. Hopefully I'll able to join you. Thank you for sharing. Be well.
8 May 2012, 06:29 PM
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
Last updated 13 Mar 2012, 05:11 AM
13 Mar 2012, 05:11 AM
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.
13 Mar 2012, 12:25 AM
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.
14 Dec 2011, 07:47 AM
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?
Last updated 14 Dec 2011, 01:25 PM
14 Dec 2011, 01:25 PM
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
14 Dec 2011, 08:37 AM
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
Last updated 1 Oct 2011, 11:02 AM
1 Oct 2011, 11:02 AM
Hi Nancy, Congratulations on your internship. You gonna be a Certified Life Coach ! Tks for sharing. Best wishes.
30 Sep 2011, 10:55 AM
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.
Last updated 30 Sep 2011, 10:34 AM
30 Sep 2011, 10:34 AM
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
20 Sep 2011, 12:10 AM
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.
Last updated 29 Aug 2011, 03:44 PM
29 Aug 2011, 03:44 PM
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.
6 Feb 2011, 02:00 PM
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 nancypat30@gmail.com. I'd be more than happy to talk to you more :)
6 Feb 2011, 05:41 AM
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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