Hypopituitarism – The Missing Puzzle Pieces

There has been a lot of talk in the support groups about the hormones that our pituitary glands create that science and medicine have not studied for our condition yet.  Extensive studies have been done on replacement hormones for Adrenal, Thyroid, Sexual Function, Antidiuretic, Prolactin and Growth hormone,  but no tests with hypopituitarism patients in regards to Beta Endorphines, Oxytocin and Melanocyte Stimulating Hormones.  All of these come from the same gland. This of course surprises me as who else is better to do research and trials on but those of us with non functioning pituitary glands.

I ask you my readers to comment if any of you have any experience or knowledge of replacing these hormones that can be shared with other patients like myself.

Beta Endorphines

Endorphins are a natural body chemical produced in the central nervous system and anterior pituitary gland. They produce the feeling of happiness and are released during exercise, danger, pain, excitement, an orgasm, or even by eating spicy food. They also work as a natural pain-killer. The term endorphin is an amalgamation of endogenous and morphine, which suggests that it is a naturally produced morphine. In terms of pain, endorphins are released in order to prevent nerve cells from releasing more pain signals.  Endorphins are the primary regulators of the immune system, representing 90% of immune system hormonal control. Ninety percent of the day’s endorphins are produced by the pituitary and adrenal glands between 2 a.m. and 4 a.m.

A deficiency of endorphins causes depression, chronic unexplained pain, and a low tolerance for pain. In many instances, low endorphin levels are misdiagnosed as depressive disorders.. Also known as endorphin deficiency disorder (EDS), a deficiency of endorphins can be difficult for doctors to diagnose initially until testing shows the lack of endorphins. Many of the symptoms associated with EDS are similar to the symptoms that occur in depressive disorders, such as manic depression and bipolar disorder. Depression, chronic or intermittent, and general body aches are the two most common symptoms, and a person may also have a tendency to cry without a logical reason or feel pain more easily. EDS makes it difficult for people to be generally happy in their lives.

I have read of depression patients utilizing opiates to stimulate levels of beta endorphins and reducing depression and anxiety symptoms.  Unfortunately the medications I read about only increase the existing and are not a replacement in those that possibly don’t create endorphins anymore. I have not found any replacements for us in the works or studies being done at this time.

Oxytocin

Oxytocin is produced by the hypothalamus and stored and secreted by the posterior pituitary gland. Oxytocin creates intimacy, trust, and builds healthy relationships. It’s released by men and women during orgasm, and by mothers during childbirth and breastfeeding. Studies on Oxytocin have shown an increases fidelity; men in monogamous relationships who were given a boost of oxytocin interacted with single women at a greater physical distance then men who weren’t given any oxytocin. The cultivation of oxytocin is essential for creating strong bonds and improved social interactions.  In addition, low oxytocin has been linked to depressive symptoms and it has been proposed as a treatment for depressive disorders.

Scientific research has uncovered brain oxytocin’s specific ability to modulate social behavior, including effects on motherly care and aggression, bonding between couples, sexual behavior, social memory, and trust. Brain oxytocin also reduces stress responses, including anxiety – and these anxiolytic effects have been demonstrated in a number of species.

A new study has found that higher levels of the “cuddle” hormone oxytocin are linked to stronger social skills in both healthy children and in children with autism. The research is published in the journal Proceedings of the National Academy of Sciences.  It was previously believed that low levels of oxytocin were the cause of autism. The new study reveals that a deficiency in oxytocin does not cause the disorder but that the hormone’s ability to increase social skills may still help treat a subset of autistic children.  The researchers found that higher oxytocin levels were linked to better social functioning in all three study groups.

A study was published in the International Journal of Psychology in August of 2013 that provides the first evidence that Oxytocin increases people’s willingness to share their emotions. Importantly, Oxytocin did not make people more talkative (word counts were comparable across the two groups) but instead increased the willingness to share the specific component that is responsible for the calming and bonding effects of social sharing: emotions. The findings are all the more remarkable because they were obtained among men, who may be less inclined than women to express their emotions.

There have been no studies that I can find on Oxytocin deficiency in hypopituitarism patients.  There are few patients that I have talked with that have found doctors willing to prescribe it in either nasal spray or tablet form although none know for sure if there will be any long term effects.  So in essence, we as patients become guinea pigs in order to try to find solutions. A 24-hour urine test is required to capture a full day’s secretion.  This 24-hour perspective is critical because oxytocin secretion can be highly situational, triggered by social and sexual activities.  A 24-hour perspective therefore affords a more comprehensive oxytocin assessment compared to other methods that only measure an isolated snapshot in time.

Melanocyte Stimulating Hormone

Melanocyte-stimulating hormone also called intermedin or melanotropin is a collective name for a group of peptide hormones produced by the skin, pituitary gland and hypothalamus in response to ultraviolet radiation.  It plays a key role in producing colored pigmentation found in the skin, hair and eyes.  It does this by inducing specialized skin cells called melanocytes to produce a pigment called melanin; melanin protects cells from DNA damage which can lead to skin cancer (melanoma).

Although known for its stimulation effect on pigment cells, studies have shown that melanocyte-stimulating hormone can also suppress appetite by acting on receptors in the hypothalamus in the brain.  This effect is enhanced by leptin, a hormone released from fat cells.  Its is also thought to affect a range of other processes in the body; it has anti-inflammatory effects, can influence the release of the hormone aldosterone which controls salt and water balance in the body and is also thought to have an effect on energy homeostasis and sexual behavior.

A deficiency in melanocyte stimulating hormone results in a lack of skin pigmentation and subsequent loss of natural protection from UV rays of the sun.  In secondary adrenal insufficiency, damage to the pituitary gland prevents release of adrenocorticotropic hormone and melanocyte stimulating hormone and there is reduced pigmentation of the skin.  Melanocyte stimulating hormone deficiency can cause increased inflammation, pain, and sleeping problems as well as a reduction in the levels of antidiuertic hormone which causes thirst and frequent urination.   Melanocyte stimulating hormone deficiency may also result in increased food intake and obesity.  Apparently it also plays a critical role in the ability of our gut to function properly and is being studied as a treatment for celiac disease and bowel disease because of its anti inflammatory effects.

Synthetic versions of MSH have been developed for human use. Two of the better known are afamelanotide (melanotan-1), developed at the University of Arizona and is in testing by Clinuvel Pharmaceuticals in Australia.  Clinuvel has warned consumers against the use of what it terms are “counterfeit”, drugs sold as “melanotan I and II” that are promoted by citing research on afamelanotide.

In the US. Bremelanotide is being developed by Palatin Technologies in New Jersey.  The strange thing with Bremelanotide is it was also effective in treating sexual dysfunction in both men (erectile dysfunction) and women (sexual arousal disorder).  It is still in Phase studies and not available to patients yet.

Melanocyte Stimulating Hormone can be measured measured by direct radioimmunoassay. Reference Ranges:
Children: Up to  25 pg/ml
Adults: Up to 5.0 pg/ml

So there is a quick rundown on the three missing pieces to the Hypopituitarism puzzle as I know it at the moment.  As i mentioned earlier, if anyone has more information, is taking them or has been tested I would love to hear your comments.

And I am sorry I did not link or show references to the studies mentioned.  I am not a professional writer and have not figured out how to do that yet.  But if anyone wants them I am happy to share.

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Author: kevsnewlife

My journey started in February of 2008 when I was rushed to emergency with blinding pain in my head. I was taken by ambulance to have a CT scan and when it came back negative I was misdiagnosed with Ice Pick Migraines. Over the years I would return to emergency a few more times for the same issue and they would just treat it as a migraine because that is what they treated it as before. Since then my body and personality has been through many changes and many more misdiagnosis. From carpel tunnel, computer elbows, rheumatoid arthritis, Gluten Intolerance and erectile dysfunction just to name a few. My memory and concentration levels were fading. I had little to no energy most of the time and I was losing interest in things I used to enjoy. My social skills diminished and I struggled to be around groups of people without anxiety. When I could no longer function properly sexually, I convinced my doctor to run more tests. The results showed an extremely low testosterone level. I thought to myself, no big issue, they make medication for that but my doctor chose to send me to an endocrinologist to find out why. In August of 2013 I met with my endocrinologist and after numerous tests, a 4 cm Macroadenoma (pituitary tumor) was discovered. The tumor was putting pressure on my Pituitary gland which in essence shut down most of the hormones in my body. I no longer had a functional adrenal system also. We will never know how long the tumor was growing but the neurosurgeon estimates up to 20 years. The MRI showed evidence of scare tissue formation on the tumor from previous hemorrhages over the years. Upon review of the 2008 CT scan he pointed out the quarter size tumor that was missed. The migraines I was having was actually pituitary apoplexy or hemorrhages. I was very lucky to be alive. The surgeon informed me they lost a patient on the table the day before for the same apoplexy. My tumor was removed transsphenoidally on Oct 7th. 2013. They could only remove about 80% of it because of the proximity to the carotid arteries and optic nerves. There is a high probability it will grow back and if so, Radiation therapy is our next weapon against it. My hormones may never return to being created naturally so I am on medications for Cortisol (Adrenal system), Thyroxine (Thyroid Gland), Testosterone, (Sex Glands) and Somatropin (Growth Hormone), DHEA and a few vitamins that hypopit patients do not metabolize so well. 3 months after surgery, I became separated after 23 years of marriage. It was a difficult time but this thing changed me as a person and I cant go back to who I was before, even if I could remember who that was. I also lost my best friend of 30 years to a brain Tumor 4 months after my surgery. He was there for me during my rough time and I will miss him deeply. My goal now is to help others going through this challenge and help to educate people to fight our medical system for their health. Never assume no news is good news when you don't get results of test back from your doctor. Be your own advocate. My fight continues but every day is a blessing and I chose to live it happy.

17 thoughts on “Hypopituitarism – The Missing Puzzle Pieces”

    1. At this point I do not think endos would even be looking at them since they have not been widely studied. But we should always ask to get these things into their minds more often than not.

      1. Reading up to this point makes me want to cry…really. It’s ALL all me. My secondary DX Endo HAS spoken and possibly even written “panhypo..”. It kills me that AFTER what should have been the best young years of my life your blog has given me answers in three subjects that cover over half of the pills in my prescriptions list. Pills that treat the symptoms but do not treat the cause and therefore do not, I repeat, do not give me hope for improving my quality of life the way replacement hormones would. Treating symptoms, such as anxiety or high BP and water retention or chronic inflammation or having ” active freckles” & sincerely MOST of the other things in the blog’s description is coming at my body like a put down rather than an enhancement. Oh, I can’t wait until my next Endo appt. I can predict that he will be adding another choice to the 24-hour urine collection test. Lord, Jesus! Even an AGHD Priest told me that in his opinion Endocrinology iuis still in diapers.

  1. Kevin- Good info, thanks for sharing! I am starting Oxytocin next week. Nasal spray compounded with FDA approved ingredients, my endo was on board after my 24-hour urine came back at 216 in a range of 250-1300.
    I’m curious about Prolactin. What extensive studies have been done? They only know of its use in breastfeeding and the current replacement doesn’t have good results. But men and non-lactating women produce it. I believe with more research, prolactin replacement could be a missing puzzle piece as well.
    “Extensive studies have been done on replacement hormones for Adrenal, Thyroid, Sexual Function, Antidiuretic, Prolactin and Growth hormone”

    1. If you follow endo journals and pubmed online you can find many studies of prolactin over the years and it’s effects on us. I do not know of a prolactin daily replacement at this time. I am sure they are still learning many things about our hormones. My concern is mainly the ones I cannot find any studies. Thank you for your comments.

  2. I’m on Humotrope for empty sella syndrome..anterior pituitary doesn’t produce enough growth hormone. Your paragraph on ocytocin was interesting. My endo doctor, Theodore Friedman in L. A. wrote a bit about it in his latest newsletter to his patients.

    1. Dr. F. Yes I have heard much about him. There is a great FB page called Oxytocin for Oxytocin that had mentioned him before. Thanks for your comment.

  3. hi, i’m a 28 year old female. i just got diagnosed with hypopituitarism this year- i had TBI- a head injury/concussion 11 years ago and shortly after that began experiencing secondary amenorrhea and had osteoporotic bones, weight loss, hair loss, tinnitus and the list goes on, . i had an MRI, substantial endocrinological tests, and obgyn tests that ruled out chromosomal abnormalities, had no irregularities in my MRI, and my reproductive system was in good shape. i was diagnosed with hypothalamic amenorrhea of unknown origin and put on birth control and i stayed on that for several years, and finally decided to stop taking it to see if my body would kick into gear…. no luck. i decided birth control for the rest of my life didn’t seem like a good option, and i wanted to know what was really going on…. from that point i went on and off various hormone treatments, both traditional and bio-identical. then last year was feeling really terrible, had started gaining weight for no reason… had my thyroid tested, and had very low TSH, T3, and T4. based on the fact that i produce basically no sex hormones (estrogen, progesterone, testosterone) and my thyroid levels are almost non existent/TSH is not functioning, my Endo said i have Hypopituitarism. my cortisol was normal and i don’t think i had any other irregularities in the hormones that were tested. i’m really hoping to find another person out there who has had experience in a similar situation. i’m still not at a level on current hormone dosing (estrogen, armour thyroid, progesterone, and just added dhea to convert into testosterone) where i feel like i am functioning well, and i have a pretty decent new Naturopath who is pretty awesome, but the endocrinologist i see is very dated in his knowledge and has been of very little help. thanks for making this blog and i hope to hear from you!

    1. HI Maya. Thanks for sharing your story. I have a closed group called Hypopituitary Support Group on Facebook too if you want to join and meet many others with this illness.

      1. hi Kevin, thanks I have just sent a join request via facebook, i generally am opposed to having a facebook but i made one just now specifically to join the group. my facebook name is May Road- i would prefer to give facebook as little factual information as possible : ) thanks and please accept my request!

  4. Hello. I am interested in joining the Facebook group too. I had a prolactinoma tumor removed resulting in panhypopituitarism. Would love some support re: HRT. Tks.

    1. Hi Julie, some good ones on Facebook are:
      “Adult Hormone Deficiencies”
      “Adult Growth Hormone Deficiency”
      “Oxytocin for Oxytocin Deficiency”
      “Who needs Oxytocin”
      Do a couple searches, you’ll find more. Good luck!
      – Melissa

    1. The best support resource I have found is through the group’s on Facebook. There are a few hypopituitary closed groups where he or yourself can share or ask information. They have been a great resource for me.

  5. I AM IN THE UK. I HAD AT CRANIOPHARYNGIOMA IN 1974. I WAS 14 YEARS OLD. RADIOTHERAPY FOLLOWED. I AM ON HYDROCORTISONE, THYROXINE, TESTOGEL, SOMATROPIN. I HAVE NOW GOT OTHER PROBLEMS CAUSED BY THE CHRONIC CONDITION. DEPRESSION HAS PLAGUED ME ALL MY LIFE. I HAVE BEEN ON MANY DIFFERING ANTI DEPRESSANTS. THE WORST BEING SERTRALINE. CURRENTLY I AM COMING OFF THEM AS THEY COMPLETELY DEPERSONALISED ME. ZOMBIEFYING ME. IN THE UK, THE SAME PROBLEM EXISTS IN REPLACEMENT HORMONES. ALL MAIN REPLACEMENTS ARE GOOD,NOT BRILLIANT, GOOD. OTHERS ARE NOT EVEN CONSIDERED FOR REPLACEMENT. I CRIED WHEN I FOUND THIS ARTICLE. I HAVE SURVIVED FOR 44 YEARS SINCE MY OP, BUT MY QUALITY OF LIFE HAS BEEN SAD AND BAD FOR MANY OF THOSE YEARS. THE PITUITARY FOUNDATION UK, NEED INFORMATION ABOUT THESE OTHER REPLACEMENTS THAT COULD MAKE A HUGE DIFFERENCE TO SUFFERERS LIVES. PLEASE CONTACT US WITH ANY RESEARCH AND INFO. I AM GOING TO COPY THE LINK ABOUT THIS AND FORWARD IT TO MY ENDO IN LEICESTER UK AND THE FOUNDATION. PETE

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