Can you really see me? – The Face of Hypopituitarism

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Can you really see me?  We have all seen the look.  You tell someone you are hypopituitary and they get this look of confusion on their face.  “But you look fine”. Most people have never heard of it before.  Honestly I had never heard of it until being diagnosed.  It is an invisible illness that we feel on the inside.  The chains, ropes and cables that hold us back from who we used to be. Hypopituitary means our Pituitary Gland is no longer functional so we don’t create all or most of the pituitary hormones that people need in their daily lives.

For me this is still all very new.  Diagnosed almost a year ago with a golf ball tumor inside my head that was crushing my pituitary gland.  Surgery to remove the tumor in October.  It is June now as I am writing this and it has been a battle with the medical system to get all of testing required to get to where I am today.  You see, we have to artificially try to replace all of the hormones we used to have now.  It is a forever balancing act with our hormones and will be for the rest of my life.

So what exactly do people not see in us from this illness?  What is it?  Maybe you have heard of Addison’s disease, or Adrenal Fatigue.  How about Hypothyroidism or Hypogonadism?  Possibly Growth Hormone Deficiency.  Have you heard of Diabetes Insipidus? Maybe you know about Beta Endorphins, Melanocytes, or Oxytocin deficiencies (which even our medical system does not fully understand yet).  You see, all of these illnesses are each caused by one hormone being deficient in your body.

For some people living with just one of these conditions is challenging enough. For those of us that are hypopituitary, we live with all or most of them every day.  Every hour of every day we analyze how we feel and have to think which hormone is causing the issue today that needs to be medically adjusted to help us feel better.  The symptom list is massive and can change depending on which hormone is causing the symptom that day or what life challenges we face.  In people who do not have this illness, your body makes these adjustments hundreds of times per day automatically.  The tree of symptoms above that I created gives you a rough idea what we may go through. Sometimes these symptoms go away only to come back again stronger than before.  Its a forever balancing act.

We hear it all the time.  “At least it’s not cancer”.  “There is always someone worse off”.  Yes you are right but in our minds that belittles the daily struggle we have.  I have heard it from others like myself.  If it was cancer at least we could make the choice to fight it.  We may win or we may lose but we can fight.  We have to deal with what we cannot fight.  We wonder every day if the tumor some of us had removed is going to return or regrow.  For many of us the tumor grew so gradual over years we did not see the changes it made to our health, our personality, our mental state.  Now we look back and wonder who we used to be and when did we really change?  When was I actually the normal me?  How will I ever know if I am normal again?  What is it even like to feel normal?

For many of us with this illness we become obsessed.  I see it in the forums and Facebook groups every day.  We obsess about everything we feel, every new symptom, and wonder if it is related or how to fix it.  The obsession is part of the illness and many don’t even know they are distancing themselves from the family.  The want and need to feel better is powerful.  Feeling exhausted and tired of fighting every day wears on a person.  The problem is the obsession we have drives us away from our family, friends, new relationships and our lives.  We hide from the world in hopes we get back to some reality of normal.  Many live with fear, anger, anxiety and depression.  Because our illness is invisible, many of our friends and family will distance themselves because they don’t understand.  In reality this is the time that we need these people the most.  We need them to understand and we really need their help.

To use me as an example, I wake up every morning and take my thyroid meds first thing on an empty stomach.  I go for a shower and after I apply my Testosterone. I will be switching to injections soon so I will also have to take another medication to ensure the testosterone is not converted to estrogen. An hour after waking up I take my large dose of adrenal system medication with food.  I need this one to survive daily.  Without it I would fall into adrenal crisis, a coma, and then possible death without emergency treatment.  This medication has an eight hour life in my body so I know when I start to get low.  This medication I take three times a day.  At night before bed I inject for growth hormone.  This is the standard day for me not including vitamins that have to be carefully sorted around meds to not interfere.  I use alarms on my phone to remind me of each.  Luckily for me I no longer have Diabetes Insipidus so that’s one less medication off my list.  In the last six months I cannot even count how many blood tests and medication dosage or brand changes I have done. There will be eye testing and MRI’s consistently for a while to watch for growth.  

Through the forums I have met many people that have had to change careers because they can longer function at the same capacity they used to.  There are those that cannot be around groups or out in society because of anxiety.  I have met those being treated for depression.  Patients that this illness has caused separation and divorce. People who are lost in the medical system fighting for a proper diagnosis or just for basic medications because they have not found the right doctor.  Those that are fighting their insurance companies because they will not cover the cost of the medications we need so they go without.  And I have seen the face of death and suicidal thoughts from some because they cannot take it anymore. 

I chose to advocate and spend time listening and helping those going through this illness as best I can.  

These are faces of the people with Hypopituitarism.  Can you really see us now?

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Author: kmuir2723

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 getting 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. 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) eventually. Since my surgery I have become separated after 23 years. It was hard 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 in February. He was there for me during my rough time this year 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.

48 thoughts on “Can you really see me? – The Face of Hypopituitarism”

  1. Well done. Truly, brought tears to my eyes. You put to words many of the feelings I have had and I am only two months into this journey. Thank you for this. I am going to share it.

  2. I am happy to say, some 14 years after my last radiation treatment that eventually your pituitary tumor is not the first thing you think about when you wake up. You do get used to taking your medication. I personally take 7-9 tablets in the morning depending on what vitamins I decide to take, three needles (I have diabetes) and another tablet at night. I see two endos – one for pituitary issues and one for diabetic issues. I am not in a relationship because of lack of libido although I am a loving and committed person. The lack of a sex drive is a killer to many partnerships. I don’t try to explain my illness to people any more – their eyes glaze over or they don’t care. Not because they are mean people, they just don’t understand after you say “brain tumor” because it sounds complicated. Nobody likes complicated. Good things? – I am stronger emotionally, I don’t sweat the small stuff, I do what I want more, (I learned to play the guitar and to paint) I learned to say no, I dropped my soul sucking “friends” and got new ones, I nap in the afternoon, I learned to ask for help when I need it. That’s not a complete list because new things happen every day. I have never said why me? because why not me?

    1. Thanks for your response Suzanne. It is great to see people functioning better after years of this illness.

  3. As a lifelong patient of pan hypopituiarism I can relate to all your problems. The story is well written and describing so many aspects of the disease.
    I live in Norway and my story started the day I was born. After a few years search for help by my parents, they managed to find a doctor back in 1970 who helped me with treatment. The problem I’ve experienced here is that they counted centimers
    growth but not how I developed as a person.
    Now I am in the fifties and I must struggle again to
    get help from the same hospital.
    My life have changed and medicines
    does not offer me the help they used too.
    I feel life is pretty much an eternal struggle.

    So keep on fighting for a better tomorrow.
    It’s worth trying.
    I wish you luck with getting it all worked out.

    1. I very much enjoyed reading your story Halvor. You English was probably better than mine. I also struggle with the stress issue which unfortunately cost me my career. I changed careers and was recently laid off so starting again. Always concerned what will be the next challenge to overcome. My endocrinologist (third one) has been very good for me though and I am mostly back to normal. I know there is some things missing but it has been so long it’s hard to know or remember what it was like before. Thank you again. The more we discuss this illness the more the world will know of it. Take care.

    1. I whole heartedly agree with Suzanne. then if we could get it in front of the GOs, Internist, Pediatritions, FPs, and Psychs, Marriage and Family Counselors who are often the first contact and first misdiagnoses or first symptom focused treatment without causal investigation.

  4. This is good. For myself I have found this condition to be isolating too, in local circles, but because there is simply no adrenal strength left over to keep up the “Going & Doing” required by all those former relationships…naturally they couldn’t understand why I seemed to drop off the face of the earth.

    Locally, I spend my limited energy on our large family and a few friends — but the best real support and likeminded understanding comes from fellow Pit patients online in some private groups and email, many who have become lifelong friends around the world. Can talk (type) any time while resting, rather than stressing, adrenals — with those who can truly relate, and share helpful information too.

    At the beginning it was an online hypopit group who saved my life when I was dying without any adrenal treatment; they directed me to an Endo who diagnosed me and took it from there, thank God. So our online circles are a pretty good deal and I’ve been very thankful for them! Thanks for your willingness to advocate for fellow hypopits, much needed.
    -Deb, panhypopit for 18 yrs since birth of my last child (but it took the first 7 yrs to seek diagnosis & treatment)

    1. Thank-you Deb. I have also found understanding in the online groups and they have been so valuable. I hope to actually meet some of them one day. I have yet to run into anyone like me in my area although I am sure they are out there.

  5. Wow! You described me better than I could describe myself! People ask me how I feel all the time, or how Im doing, I might need to copy this and hand it to them when they ask. Good read

  6. Thankyou from the bottom of my heart. I have a 7 yr old grandson born with this . He has no pituitary gland. He also is completely blind. It is a miracle they found his disease before we lost him. He did code twice. He can not articulate how he is feeling much of the time, unless he needs his DDAVP. He can be irratable , as well as many other things. Your arrival give us insight thankyou for that.

    1. You are very welcome Melinda. I can certainly understand the challenges you and your grandson face. It can be difficult for the family. Do not be afraid to get family therapy from someone experienced with this illness.

  7. This is Fantastic illustration and expressed in words the feelings and challenges I have been experiencing for years having gone through 2 surgery. Really good Kevin.

  8. Exactly what I’ve experienced, perfectly said. Loved the tree and information it holds. Will share. Know that you are not alone. Many of us truly understand.

  9. Kevin, thanks for the time and effort you put into this brilliant article and the PHP Tree is brilliant! Will show this to anyone who doesn’t understand what I/we are coping with every second of our lives. I have congenital PHP and although don’t have all the symptoms on the tree can identify with people that do!

    1. Thank you Richard. Yes the symptom tree took a lot of work and the symptoms are exhaustive. Most people seem to have some similarities and then the odd ones start to pop up. Hope you are doing well.

  10. Hi, my name is Daniel I’m 19 and glad to finally have someone who truly understand how I feel. Thank you for your message.

  11. This was wonderfully said. I have had some pretty bad doctors through the years. After surgery I have traveled to different states and no one could help me until years latter I found a doctor who was going to help me with the pain. She ran the blood work which I have had done for years and found me to be adrenal insuffient and low thyroid. When I got started on it I felt so much better. Now I am a bad diabetic and I take shots through the day and a different one at night. I take two different types of pills. Just like you said I take lots of pills all day long. My insurance is not like it used to be and it cost alot for my medication. My heart has been really bad for years from this. I have been in the hospital for around 5 times to have stints put in my heart. There is a long list of health problems. Thank you for putting this out for people to read.

    1. Thanks for your comment Lawana. Just for curiosity you didn’t mention sex hormones or growth hormone. Have you been tested for those deficiencies as well?

      1. Perfectly said, well done. I found out July/2015 that I have a Macroadenoma causing Panhopituatarism, surgery was in September, therefore I can relate completely. Kingston General Hospital was a great experience, medical staff was great. I found a highly respected Endocrinologist here, starting to get the medications adjusted.

      2. That’s great news. I am so happy for you. Getting everything balanced is the only way to get our lives back.

  12. I have been panhypopit for 19 years. I lost my job as a sleep technician three years ago due to the midnight shift was too hard on my body. I now raise puppies for leader dog and puppies for people with disabilities. Since being unemployed I am pretty much invisible and looked down on by my family and friends. I am extremely depressed by this and honestly everyday is a battle to go on. I keep wondering how much longer do I have to live on this planet of people that only judge your worth by your income? I am so tired of people judging me.

    1. That’s where I found so much love and understanding in the Facebook support groups. We all are going through this in our ways. I like to write how I feel some days in hopes it helps others and they see they are not alone. Hang in there. You are a gift to the animals and people you are helping.

      1. Thank you. I needed that. I am trying to hang in there. I really enjoy helping people and giving them a gift of Independence with a dog. I sometimes think maybe this all happened to me to let me do what I truly love. Thank you for your support. I am glad I found your wonderful article. Thank you for taking the time to write it.

      2. The graphic is brilliant! Thank you for your blog. I am still working although my pituitary tumor and its effects, including 3 1/2 years of misdiagnosis and mistreatment, have cost me my career, my marriage, and a lot of pain. I promised my 4 kids after my partial resection that I would see them all through college whatever it took. My oldest Barb graduated 3 years ago, my special needs daughter Terri and my older son John will graduate this year, and my youngest Duncan is a Junior in high school.

  13. In 2014 i found out that i had pituitary tumor. I had surgery. My Neurologist and Endocrinologist are awesome.After the surgery every 6 months i had MRI and blood work done. I was told tumor can come back.I have been feeling better after the surgery no more mood swings.I used to get angry so quickly over little things.After a year of surgery everything looked good so my doctors told me they will yearly MRI and blood work. This Apirl i had my MRI there is a small growth again. My Neurologist told me i have to do another MRI in four months. He said they want to see if grows bigger. He said could be just a scar tissue or maybe tumor is back. So end of July i will have MRI again. My doctor said if its scar tissues can grow bigger and affect pituitary gland functions too.i might have to have surgery and radiation too.My thyroid has been up and down since the surgery. But recently it has been low. My Endocrinologist put me on thyroid medication now.I gained weight and feel overly tired all the time. I have been on the medication for a month now.i have starting to feel better little bit. End of July i will have my MRI done again.Lets see what the results shows.I my doctors has been so amazing. They are on top of everything.

  14. I just completed 6 weeks of radiation treatments for a large reacurred nonfuctioning tumor. I had apoplexy 11mm non functioning 10 years previous. I can completely relate, 2 divorces, lost relationships, appearance changes, depression, anxiety, lost career. So many losses is hard to cope with.

  15. Would it be possible for you to email be a high resolution image of the panhypopituitarism tree to my email? I think it is so inspiring!!!!! I feel that way- every day! I would love to be able to blow it up on a canvas for my own personal use and put on my wall, if you would not object.

    It’s not just symptom, or in my case even one condition that takes us down. When Sheehans killed my pituitary during the birth of my third child (the hospital didn’t give me a transfusion), I also developed a debilitating pain condition that was later relieved with seizure meds. Turns out there was other small brain damage during the blood loss. Another unfortunate side effect of the blood loss, while I was losing my pituitary, is that I have developed stage 4 AVN of both hips and left knee. I’m currently awaiting transplants.

    Your picture reminds me to take our condition a day or even an hour at a time! ☺️👍

  16. Hello, Mr. Muir,

    I lost the place where your post stated the name of your closed group on fb. Could you e-mail it to me?
    Also, I was really psyched to understand that my lack of certain desires and diagnosis of depression could just be a lack of posterior Pituitary endorphins, but my Endo’s office says there is no test for them. I pass the Dex tests, though the first one at a low dose threw me off kilter way worse than the second w 8 pills. I passed both. I am a true Reactive Hypoglycemic, so no ITT tests for me! Just getting a GTT used to cause me to experience a cold, crying breakdown from low sugar. My defining test was an Argenine challenge of 60 ml. Any blood draw under a 3ng was a fail, and ALL of mine were under a 1 ng, even the control draw before they ran the Argenine into my vein.

    I have to eat higher Protien than the average person. Sugar always causes me to gain weight, etc.

    In your answer by e-mail please include all medical tests recommended for someone like me. My ACTH is fine, so my Endocrinologist no longer tests it, however I do take 12.5 to 15 mg of Prednisone every morning which, along w the Somatropin, over 200mcg (I think there is something wrong w that!) of Thyroid daily, an SSRI called Trintellix (that I notice, by feeling low/depressed is missing if it is not filled in time), and Vyvanse which gives me get up and go without the jittery, nervous negative or bad side-effects of Adderall, plus seizure meds, migrane med, and added pain meds on my period, not to mention Acyclovir to keep a nasal/sinus fever blister away, plus allergy & asthmma and muscle relaxers from TMJ and tension. I take my meds as prescribed, so to the untrained eye I seem okay, but I am not and because Pan-hypoPit and PMDD are both rare, combined w Epilepsy and migrane, plus Lumbar & Cervical, would you believe that the State & SSDI continue to say I am NOT disables? Lol Oh, yeah, Plantar’s Fasciatis-I just popped my ankles while I was typing w my third finger…so it reminded me, plus the EMG confirmed that both of my wrists have carpel tunnel. But an 80+ year old lady today called me “Cathy 18!”, even though I told her that I am 53.

    Please accept my compliments on your fine mind having deciphered so many things that are related to the Pituitary, and for being an example in not giving up! I hope to hear from you soon.

    1. You can find me in Hypopituitary Support Group on Facebook. An yes you are way over medicated in my opinion. Something is wrong there.

  17. Thank you for this excellent post. I am a brain cancer survivor of 10 years and have been dealing with hypopituitarism since then. I can absolutely relate to everything you mentioned, and follow many of the same procedures/medications. It really is a never ending battle.. in my experience, there are good days, and then there are days where I don’t feel like moving. It’s hard to maintain a social life out of work and feel like a normal human being. I’m happy to know that I’m not alone in my struggles with this.

  18. Hi, thank you for sharing your experience. I relate to 5 or 6 branches of that amazing tree. I just found out that my cortisol is out of whack and I just had an acth test yesterday, no results yet. I’m trying to find out if it’s primary/secondary Addison’s disease, but after reading your blog I fear there is a better chance of there being an adenoma. I had a brain CT last August because I was diagnosed with a non-operable chiari malformation but there was no mention of any tumors. What are the odds they could have missed it? I am waiting to see an endocrinologist as well, any tips for the first visit? I’m tired of feeling the way I do but I’m also scared of the test results. I hope by now that you and everyone else are feeling better and that your quality of life has improved.

  19. I have read many articles about medical marijuana and how it can help you in terms of chronic pain, bone injuries, eating disorder/anorexia, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this article about a marijuana strain from http://www.ilovegrowingmarijuana.com/cherry-diesel/. Cbd and thc are also new to me and I don’t even smoke. Alternatively, they’ve also found new ways to infuse cannabis on food and beverages. If this is true I can’t find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks

    1. Thanks for your comment. I am not sure in what regards you are asking for me to provide a response. Chronic pain, eating disorder/anorexia, anxiety disorders and panic attacks, and to assist with side effects of chemo treatment for cancer are certainly benefits. But as to treating effects of Hypopituitarism, it would depend on the symptom you are trying to relieve. There is no evidence it cures any illnesses at this stage. Much more research needs to be done. Now that it is legal in Canada I am sure there will be some additional studies and testing.

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