Hypopituitarism – A Loss of Identity

As I write this I am sure there may be some other patients that will disagree with me.  One of my challenges throughout this illness has been figuring out who I am now.  I read a description of a person with a chronic illness as forever walking down a dividing line between the past and the future. Looking backward, he can see everything the illness has taken from him or has forced him to relinquish. Looking forward, he can’t see anything quite clearly. There’s no going back to the past, and the future is uncertain.

My story is my own and I accept that some of the things that define me now are not the same as others following their own path.  For me, my life changed a lot during this illness. Being misdiagnosed for many years, as many others have been, we either dealt with the symptoms, or we sought out medical advice to find the answers.  With a non functioning pituitary tumor that took years to grow, the changes in me happened so gradually that for most of my friends and family, they didn’t notice.  It wasn’t until the last couple years that people could say they actually saw the changes in me.  Changes that I didn’t notice myself.

Loss of aggression was one of the first major clues.  Which sounds OK but in the construction business world you need aggression to deal with consultants and contractors on a daily basis.  Loss of sex drive.  This happened really over a couple years on a slow decline until i felt I was no longer functioning as a man or husband.  It was the most difficult thing to admit  and what finally got me to see my doctor.  It was then that I was told at the age of 44 my testosterone was nil.  The good thing was my doctor did not just prescribe me testosterone and leave it at that.  He said to me, yes your testosterone is nil but we need to know why.  Thankfully he sent me to an endocrinologist that completed the testing and found the golf ball tumor on my pituitary gland.  Anyways you can read about all that in some of my previous stories.

For 12 years before being diagnosed I pushed my life to forward my career and provide for my family.  I spent 70% of my working life traveling on the road for many years.  In the last few years, I had worked my way to managing those people that would now spend their days travelling, and I had the chance to slow down and spend time at home.   I had built an addition on the home for my wife to build her own business.  Our future was planned and I had goals and dreams to pursue. We had been married for 22 years when the tumor diagnosis was found.

I wrote this to discuss the loss of identity. During the last, I would guess, two to three years before diagnosis, I made many mental mistakes with my life.  I began to lose who I was.  I can blame my hormone levels for being in the toilet if I choose.  Really I don’t know.  I gave up a career because I was struggling mentally but didn’t know why.  I assumed I needed a change after so many years so I decided to start my own business. My marriage struggled.  The mental challenges continued during this period until being diagnosed six months after giving up my career.  They say everything happens for a reason…I am still trying to figure out the reasons.

Six weeks after surgery to remove the 4 cm tumor from my head, my wife tells me she wants a divorce.  It destroyed me.  I would love to tell everyone that I took it like a man and sucked it up and moved on.  Truth is, being deficient on all hormones, adrenals, thyroid, growth hormone, sex hormones…I was a basket case.  It was at this point that I lost who I was. Along with my identity, many other feelings came across. A loss of comfort, sexual function, career, income, self-efficacy, freedom, cognitive function, intimacy, pride, joy, self-esteem, self-control, independence, mental health, hope, dignity, and certainty. Over the last couple years I have felt these over and over again.  Sorting though the grief alone is a tremendous challenge.

Until you yourself live through a complete hormone deficiency, you will never understand what those effects have on a person.  My endo tried to describe it when replacing all these hormones synthetically that it was like going through a medically induced depression, puberty, menopause, and a mid life crisis  all at the same time.

When you go through a tumor in your brain, many people you thought you were close to will step away.  They don’t mean to be rude or not sympathetic but they don’t understand and it puts them face to face with their own mortality.  They do’t know how to face you or what to say.  Going through this tumor, plus a divorce, seemed to disconnect me even further.  I went from the career guy with family and lots friends to the sick separated guy feeling alone and on my own to deal with this.  I know people going through divorce normally go through some of these feelings.  It was just magnified for me with the illness.

It was something that everyone I knew would never understand.  You tell them it’s hypopituitarism and you get the blank stare.  I was no longer the person that they used to know.

It has been almost three years now, since my original diagnosis.  Tumor was removed in Oct of 2013.  It has been two years of trying to synthetically replace all the hormones that others create on a regular basis but we have to balance and figure out correct dosages regularly.  As much as I have tried to explain to family and friends, they will never truly understand what we work through daily.  Yes…”I am fine”…I tell them.  “All good!”  What else can I say?  I don’t want their pity and I don’t want them to watch me struggle.  It’s written on the inside of my face.  For people who are hypopituitary, our losses are multiple and permanent and therefore difficult to explain. They are infinite losses that will effect our quality of life forever.

Well-meaning individuals, whether friends and family or even doctors can make it more difficult. Some may try to add a helpful perspective by saying, “It could be worse” or “You look fine!” All these statements do are invalidate our physical and emotional challenges.  It is very dismissive of the pain we are experiencing and the type of grief we are trying to manage. Everyone has a right to how they feel, and for us we just say, “It could be better.” There’s also a lot of pride in those of us with chronic illness and it makes us reluctant to ask for help from friends or loved ones.  Sometimes we live in denial about our own limitations.  We often retreat from our social networks, leading to poor social support. Our relationships will often suffer as we become more and more isolated. The depression can worsen to the point where some hypopituitary patients become actively suicidal or passively suicidal or just stop taking care of themselves in any meaningful way.

I gave up a while ago trying to explain the bad days because I really can’t explain them to myself.  I am glad they have become fewer and further between than before.  But how do you even try to explain when hormones are out of whack one day, but good the next?  You can’t explain what its like to have your brain in a fog, pain in your body, emotional disconnect from others, a want to just be alone and a want to just be with someone that understands.

I have forgotten much of the year during diagnosis and have been trying to rebuild since then.  I truly don’t believe all of the pieces are back in place yet. I am doing my best to move forward anyways but have yet to truly define or figure out who I am now.  I know I am no longer the same person mentally that I was before this tumor.  I seem to remind myself on a daily basis of this.  It doesn’t make me less of a person.  I probably help more people now that I ever did before because after going through this we find a connection with others that we never had before. My challenge is finding connection outside the illness itself.

In reviewing the psychology of this illness, I came across Maslow’s hierarchy of Human needs, he used the terms “physiological”, “safety”, “belongingness” and “love”, “esteem”, “self-actualization”, and “self-transcendence” to describe the pattern that human motivations generally move through.

What he says is there may not be any physical indications, but if a person is not meeting the most fundamental “physiological” needs as mentioned above,  and “Safety” we can go through anxiety, tension and depression. The next most basic level of needs, Maslow called “deficiency needs” or “d-needs”: love, belonging, esteem, friendship, and physical needs and finally self actualization.   Maslow’s theory suggests that the most basic level of needs must be met before the individual will strongly desire (or focus motivation upon) the secondary or higher level needs.

When you think about most of us that are diagnosed hypopituitary, we spend a countless amount of time searching and trying to understand our illness.  Trying to find answers to why and what is causing all of our challenges.  This is all part of the physiological state. Our next phase is security.  Whether that be in finally finding a balance with hormones or finding a doctor/endocrinologist that understands or is willing to listen or help.  Or having a partner or family member that is by your side for the duration and willing to love you no matter the challenges.  Or just a feeling of finally understanding our own illness and how to read our own bodies needs.

Finding the next step for me has been difficult.  A “love/belonging” or need.  The belonging or need came through the support groups.  I found peace and understanding with those going through the same as myself.  Helping others going through this illness as I have, became what drove me day in and day out.  But I am not fulfilled.

But I find myself still in this stage.  Somewhere trying to sort out love and passions.  What does it mean? What does it feel like? Why don’t I feel this?  Why is there such a disconnect? Somewhere between here and the next stage, working towards my own self esteem, is where I seem to be stuck.

The human mind and brain are complex and have parallel processes running at the same time.  Maslow said that the different levels of motivation could occur at any time in the human mind, but he focused on identifying the basic types of motivation and the order in which they should be met.  Once we find that level of esteem again, we can move into the Self Actualization stage.  Not everyone moves to this stage.  Some choose to stay at the point that they have great self esteem and that is an amazing place to be.

“What a man can be, he must be. This need we may call self-actualization…It refers to the desire for self-fulfillment, namely, to the tendency for him to become actualized in what he is potentially. This tendency might be phrased as the desire to become more and more what one is, to become everything that one is capable of becoming.”

Self Actualization. To me this relates again back to finding my own identity. It’s no longer about comparing myself to who I used to be and trying to get back there again. I can only hope that one day I will be happy and find that new identity.  I have to learn not to curse the storm but instead to learn to dance in the rain!


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.

42 thoughts on “Hypopituitarism – A Loss of Identity”

  1. Thanks. It is so hard to explain to people they just think oh it’s no cancer your good but they don’t get just how bad it is living like this. Thanks for telling your story as mine is pretty close to the same.

  2. Wonderfully written, and poignantly so. Very true, raw, and heartfelt. I thank you for sharing your reflection throughout your often painful, if not debilitating, journey through Hypopituitarism, a tumor, and the added personal crisis of a divorce. My heart goes out to you. I thank you for your willingness, desire and passion to share with us your insights. The psyche of a person who has a chronic illness can be so fragile, but can also be a spring for finding that strength within. Thank you for fighting, for living, and for sharing your wealth of knowledge with others who are so often plagued with similar conditions and emotions. God bless you for all you’ve done! Keep moving forward, Kevin!

  3. Well you’re not alone as you already must know. I myself struggle to do day to day functions at times. Counseling did help some but now I just force myself to be my best version of myself. I opened my business regardless of the paralyzingly anxiety, insomnia, low motivation, etc. I force myself to go out with friends even though I can’t drink with them because it makes me feel awful. I exercise, not like I once did, but gently not to stress my adrenals, and sometimes I overdo it and can’t sleep at night.

    With all of that being said I do think you should look into bio identical hormones. They have helped tremendously, I take natural desiccated thyroid, bio testosterone and other hormones and it is amazing how good you can feel when you get the dose right. Find a dr that will try them with you and best of luck on your journey ahead.

    1. I have struggled with hypopituitarism since 1994. I totally understand your plight and unfortunately identify with it. My hat is off to you for putting your struggle into words. Bless you. Now, last comment about bio identical hormones is true. They mimic your body’s own hormones and are better for you. However, I have been taking them for years and still struggle with debilitating illness. Yes, I have some improvements, but as for feeling good? No. We all do the best we can with what we have, but the medical profession has failed us all. For the powers that be, there are too few of us to spend the time to find out how to improve the quality of our day to day functioning. There are some drugs, such as Plenadren, used in the UK since 2011, to mimic our own circadian rhythm, that have helped our kind immensely. Of course, in the US, it is unavailable. It is considered an Orphan drug, but has been denied to physicians here who do care about their patients. Yes, you can purchase it online, but it is very, ridiculously expensive. That said….I am older now. I do not try to explain my issues to anyone anymore. I am too tired and too weary from years of hoping for new developments . I have decided I owe explanations to no one and will just be who I am, although I am still unfamiliar with “that”person. I used to be a bundle of energy. I laughed until it hurt, and was my perfect weight. I free dived, was a runner, and never slowed down. I still have literal dreams of running in a green forest with the wind in my hair. I feel my past energy in that dream. It feels amazing! Waking up , reality slays me and it all begins again. However, I never see a sunset, a newborn baby, or feel the love from my precious husband of 44 years, that I am not awed. In spite of all the bad , there is good. And life goes on. To all of “us” I wish you peace, love, and many sunsets.

  4. Hi there, I am in awe to hear the similarities of our journey. I was diagnosed 7 months ago. I too am losing my marriage of 20 years to a pituitary tumor. I’m struggling to find my purpose because although I am still a mom of 3 teenagers, they are doing their own thing. And I am just there. Thank you for sharing your story.

      1. kmuir2723, thank you for sharing your difficult journey. I admire your courage & transparency. Someone I care deeply about had a pituitary adenoma that was surgically removed several years ago. I think the tumor and/or the surgery have affected her moods & perceptions of things that people (including me) do & say. I have been searching online for information, but haven’t found much. She has been to an endocrinologist but tested normal. In your experience, can the tests an endocrinologist makes miss something? Can a tumor and/or surgery affect the pituitary in such a way that it alters a person’s perceptions so that they find small things highly offensive? Thanks in advance for your help.

      2. Hi Rick. Thanks for your comments. I think there are two parts to this question. First. Testing normal for hormones. When you say normal is this based on taking replacement replacements or based on pituitary function. Also I would be curious what all hormones have been tested. The other issue I see is what is normal for one person does not mean it is normal for another. Are any of the hormones at the low end of the range? Just a couple thoughts to start.

  5. Thank you for sharing and for your support too. This certainly helped me and surely will help many others. Keep writing – and fighting!

  6. Wow! Very well written article. Unfortunately, it reminds me of my old, post crainiotomy crazy self. Approximately 10 years after surgery, I began feeling like the old self. With God’s blessings and a friend’s introduction to nutraceuticalss, I have my life back.

  7. Thank you for sharing. I can relate. I am recovering from Cushings. I am mourning the loss of myself too and all that was. Blessings.

  8. Thanks for writing this Kevin. I was just diagnosed back in October 2015 of having Panhypopituitarism. I also suffer with Diabetes Insipidus. Even though this has been a short journey for me it’s been a difficult one. One that people that don’t have this disease don’t understand. I feel I battle every minute of everyday to make them understand how I feel. I have some good days but my bad days outweigh them. So reading your article will maybe shed some light on this illness and they may then realize that what I’m going through is real and a struggle for me.

  9. Thanksyou so muchfor putting into words what all of us with this condition is like to live with. Although I didnt have a tumor my pituitary has not functioned since I hit puberty an alway felt old growing up and was obese and not matter what diet I was put on by doctor was never able to lose weight . Now 48 was only diagnosed 3years ago

  10. They found my tumor when I was 36. I am 49 today and never the same, and will never be healed. I was diagnosed with Acromegaly. Today I am a loner mainly but… that’s a good thing not a bad thing. I get a lot of stuff done now.

  11. Sounds like my story with a few small differences. Well written. I have been this way since 1997. It has been a long road for me and certainly a loss of identity after the tumour. I lost my ‘physicality’ as an athlete and my self-esteem but gained an education with diplomas and degrees when I decided to go back and study and use the stuff that still worked. Admittedly it was a long road as mental ‘fog’ would come and go and it could be difficult to concentrate, but I got there in the end which was a bonus for my self-esteem (that I could do it despite my illness). Don’t get me wrong – I still question myself everyday and still have many limitations that really fry my eggs but I try to work around them. I guess I have become less ‘social’ as well and less tolerant of people in general. I have less tolerance of ‘plastic people’ and generally stick to my own circles. I have developed a few hobbies like photography and art and I work from home on my computer. These things tend to take less physical power and more thinking power and I get tired but at least I am doing something. I’m not sure I have found myself but I have found a different self. I’m not completely happy with it but I do the best I can. All the best to you on your journey. It is not easy for us but we are a resilient bunch.

  12. Wow….I’m in your shoes and feeling so so lost. I have a pituitary microadenoma they say is non functioning….yet I have milk and high prolactin and very low cortisol, Primary Immune Deficiency, Secondary Adrenal Insufficiency all since 2010. All rhe feelings you had I’m living and still fighting to get through. I need a new endo to help. God bless you for you sharing and I’m praying for you all.

    1. Hi there…I too got diagnosed on 2010 with the same tumor…..what you are suffering….I too am going through…..every day is hard…..

  13. I tend to think of this condition as a loss of personality, grace and style. It killed my looks, drove me half crazy, and 25 years later every day is an experiment in normalcy, which I scarcely know what that means any more. Great post.

    1. Thanks for your comment. There are certainly struggles but I know I have found a new normal in my life. It isn’t perfect but acceptance is an amazing thing.

  14. Thanks so much for the opportunity to share my experience. Your words and those of others who respond so accurately reflect the daily struggles that I have, too.

    In the summer of 2013, in a matter of days, in a matter of one particular event, life as I had known it changed. My feet were not communicating with my brain, and I literally lost my ability to walk.

    A stat MRI was ordered, and I wasted no time. Not only did I have a large pituitary tumor, but it surrounded my optic nerve and had attached itself to my hypothalamus. Additionally, I had a fluid blockage that was putting me in grave danger of a stroke. I went in for an evaluation, and was admitted immediately to have the pressure taken off my brain by rerouting the fluid to my stomach cavity. In a matter of minutes my walking ability returned.

    Summer of 2013 was a summer I really don’t remember. Removal of the tumor through my nose and closing the wound using existing tissue in my sinus area. The first surgery failed as the flap did not properly seal. Next up was my biggest risk yet, spinal meningitis. And another surgery using skin tissue from my shoulder. Thankfully it worked, but the recovery from the illness was slow and uncertain. I lost partial sight in my left eye which has failed even more as time goes by.

    I had both a super team of surgeons as well as an endocrinologist I have always trusted. She called it like it was.

    “Your goal in recovery is to get back to about 80% of who and what you were before. We do that with hormones, steroids, and other essential drugs to treat your diabetes insipidus.”

    I thought 80% sounded pretty good after all that I went through. What I didn’t realize was just how much I’d miss the elements of MY life that didn’t return.

    I’m 70 now, and I am thankful for every day. I love to write, and while I can do a pretty good job for a few minutes, I lose both concentration and focus. I stare at the screen. Or am distracted to other thoughts. Or just quit.

    My intent was to work full time until now. Diabetes insipidus alone prevented me from having any thoughts of a job. Not to mention the issue I still have with balance. Probably a mix of old age as well as lingering results of all the trauma. And while I tried returning to a gym to just do mild lifting and walking, I found myself at risk getting on the machines or even remembering how to set them correctly.

    I did pretty well walking in our neighborhood’s familiar territory for a while, but then found myself walking a couple blocks and not wanting to walk home. So my walks became shorter.

    Like many of you, I don’t know for sure if my hormone and drug levels are right. Some days pretty good. Some never come together at all.

    Earlier this year I attempted to build a website that would keep me focused and busy, and for a brief while I was able to make a few good things happen. But then I discovered it had grown stressful to try to interview people or craft and article that made sense. I gave up the idea in June of this year.

    Throw in the context that I was diagnosed with PTSD from my phsychologist. My family doctor and my endocrinologist both suggested I consider an antidepressant. I remain on it today because it does one thing that I couldn’t do by myself. It levels out the highs and the lows to a gentle wave each day as the hours go by and the calendar pages turn.

    I am thankful for all I have, but I am not at all sure what is left. After 34 years in management, I can’t even manage to find solace and peace; certainly not happiness. I have little interest in anything social. I am easily upset by noise or even a small distraction in my day.

    Like others on here, living with the new normal is a chance I am grateful for. But it is just not enough.

    I think I’m probably 70-30 in the recovery cycle after religiously taking medications. But that 30 I’m missing might as well be 100 some days. I have a relaxing vacation week coming up. I won’t tell my wife that I don’t want to go, but instead I will go and pick and choose the moments I can to enjoy. I want to be there, but I don’t want to be there like this.

    Many of you can get that.

    I wish you all the best, and I want to remind you that a laugh myself to tears over some of my grandkids’ antics. I count those as a bonus every time they happen.

    I have no thoughts of ending my life, but I also worry little about the peace that might come when my time here is done.

  15. Wow wow wow! Almost identical journeys! I can’t believe I came across your blog. I’m 6 months post op. It’s so so hard, you’re right, it’s hard for people to understand.

  16. Currently trying to find the new ‘me’ as I know life will never be the same as pre- tumour & Hypopituirism. The one thing I struggle to handle is the rapid shifts from feeling good and not remembering the condition to struggling to climb the same staircase you descended less than 10 minutes ago! I feel your pain of divorce, I experienced it too but years before diagnosis. I am very optimistic that my new me will bring happiness and fulfilment but it’s a scary place to be. I’d love to work from home as my levels of fatigue is very bad- I also have no growth hormone as well as no cortisol. The corisol is being treated but not the growth as yet. I can identify with you feeling as if you have lost your identity. All of a sudden you don’t know quite where you belong or fit in. People become impatient with you as they really don’t understand or care to understand- that’s how I perceive it at times. No matter how many times you try to explain only we can truly get what this means. Wishing all of us a bright new future! Let’s stay in touch, support from each other may prove to be a great choice 🙂

  17. I just stumbled upon your blog. I was doing a search for “hypopituitarism and ketogenic diet”, in hopes of rediscovering the blog I stumbled upon about two weeks ago. Just looking for more information on hypopituitarism and the ketogenic diet. I grew up with the belief that food has the power to heal. So naturally that makes this easier for me. I tried the autoimmune Paleo diet for about nine months I felt good for the first few weeks and then I was back to feeling crappy again. I think I have discovered why now. There were a few things in my diet that I was still eating relatively regularly that were very high in carbohydrates/sugars. That being said I have only been on the ketogenic diet for nine days now. I felt good for the first few days, however I have been feeling really cruddy the last few. And today I had to stress dose with my hydrocortisone. It makes me really nervous, as I had a scare with sepsis and adrenal crisis last February. So I would be really interested to hear any feedback on The moderate protein and fats Version of the ketogenic diet that I assume you are still on. Thank you so much for being so vulnerable/transparent it takes great courage to do that.

    1. Hi Jennifer. I did find the same thing early on on the ketogenic way of eating. It does pass it time as your body goes through the transition but you have to keep your electrolytes up. Keep in mind this is no cure for hypopituitarism. This is just to help those that want to feel better or lose some weight. For moderate carbs just keep below 100. Even better 20 to 50 grams per day. You still should try to stay away from sugars. They really mess with our system. After the carbs (depending on your body fat % and if you are trying to lose weight) I split my remaining grams 1/2 and 1/2 between proteins and fats.

      1. Thanks for your speedy reply. I never saw the notification in my email that you responded, I will have to check my spam. I am fully aware that there is no cure for hypopit. I am just trying to reclaim some energy and lose some weight…..the weight loss is so slow. I noticed the day after my stress dose I gained almost a pound! I lost it all back plus a few ounces the following day. I have no idea how anyone in our condition has the energy to work 9-5 with a family. I have been blessed to be a stay at home mom for 19 years. My youngest son was born with a rare condition that has had him hospitalized over 100 times in 16 years. I suppose that has been my job keeping him well. I have a hard time accepting my limitations. After my close call last February I am learning to make better choices. I have to say no to friends and family a lot more then I like. You really do find out who really loves you living with a chronic illness. I have lost friends, and I have been blessed with better ones. 🙂

      2. Hi, I just found your blog post on hypopituitarism and the keto diet. Did you find an endocrinologist who supports you with a keto diet and growth hormone replacement? I have growth hormone deficiency, hypothyroidism, and blood sugar/insulin issues and want to find an endocrinologist that understands all of these things along with a keto diet. I don’t want you waste my time with a typical MD who only wants to prescribe drugs. I am currently taking growth hormone though and will continue this. Where is your endocrinologist, and would you share their name please? Thanks!

      3. Yes my current endo sent for me for the Insulin Tolerance test and I failed it miserably. I have been on GH for 3 years now. It was a life changer. She also supports Keto but more from a reduced carbs and sugar but not the full fat way of eating.

  18. Omg….thank you everyone for sharing these stories…..I got diagnosed in 2010 with a 4cm tumor…..which cannot be operated on due to how it has attached itself….my marriage was already declining do to bad sex life etc….and detachment from myself towards other people. I got divorced in 2013……and to be honest I’m struggling with life…….depression….lack of emotion for anything or anyone….the few relationships I’ve tried to form since my divorce have all gone wrong due to my pushing everyone away. My underactive thyroid I’d playing havoc with me….and I’m on the highest dose of cabergoline I can take. I can’t see a way forward most of the time……and I feel alone even if I’m on a room full of people. I had no testosterone when I got diagnosed…..and a prolactin level that was through the roof. I’m in the middle of trying to get counselling…..but I live my life day by day…..I can’t look too far ahead….and most of the time now I am dragging myself through life. I was glad to find I am not the only person suffering side effects like mine….I no longer feel completely alone. Many thanks

  19. So grateful I found your site. I was diagnosed in 2011 with hypopituitarism. I also have oesto arthritis..knee replacements and fibromyalgia . I have been managing quite well until I found out in the cruelest way my husband was having an affair 2 months ago whilst I was in hospital. Feeling suicidal and broken hearted. I found your story very touching and very real and authentic. It’s helped me get through the night. Thank you

  20. This blog rings so true to me it’s scary .. a few small details changed and this is me .. although I am pre-diagnosis .. I had and MRI on the 24th Dec and just received a request (28th Jan) to go back for another MRI with Contrast .. so I assume they saw something on the first one (NHS UK) I am going through a divorce etc probably due to this and finding my world turned upside down from having a successful career 6 years ago .. I found an article on the web describing my symptoms of lethargy, fuzzy thinking etc which I had been experiencing for years being due to low Testosterone. So i booked an online blood test which showed low result (10) then took it to my GP who had further tests result (7) and then referred me to an endocrinologist. I have my next MRI in a week and although I have trepidations, am happy that perhaps I have found the cause of the last 6 years of feeling this way. Will update with findings. Kim

  21. Hi; Loved the blog. I have pànhypopytuitarism, caused by Cushing sindrome. At the moment I take GH (genotropin), cortisol, progesterone, estrogens, tyroid hormones. Im doing pretty well 😉 But…I d like to improve. Ex. find a diet which willl not make me fat easiy. Im reading lots about Keto. ANd I have a question for all of you: having hypotyroidism, does fasting have any sense? I mean, as our hormpoones are ruled by pills, does it hove any sense?
    Thanks for writting and a big hug to everyone in this journey.
    Amaia, DOnostia-San Sebastian (Basque Land) Europe.

    1. I cannot speak to fasting for sure. I would be concerned if you take Cortisol as cortisol should always be taken with food or it can cause issues with your stomach long term.

  22. I’ve read this article a few times now. It’s amazing when your searching through the internet for answers and trying to understand what the heck is going on. Not saying my situation but s idenyicle but dam it’s close.
    Before my crash it felt like I was being hit in the fore head with a brick for 4 days. Went after day 2 to hospital in tears and pain and was told to go home and take paracetamol. 2 weeks later crash, diagnosis then a slow process to replace each dificiency 1 by 1. It turned out my pituitary gland haemorrhaged and I have no tumour. It just broke. It’s amazing to the full of life and super soldier like energy I had to a person who can struggle to walk at times. It’s been a bit of a domino effect to. With deterioration of muscle others issues came to light. Arches collapsed being the worst. This plus fatigue is no picnic but hay it is what it is and I have to manage it. I to am in hydrocortisone, levothyroine, Testo gel and growth hormone. Growth hormone was the last to be treated. My body is not the same but at least my mind is closer to be sound than ever. Growth hormone has done wonders and moved me forward in my recovery. The up and down moods are insane. Like others say, no one really understands what we are going through and I am continually fighting work as they try to increase my duties and I try to explain I cannot manage what they are trying to get me to do. Everyday mornings are the worst and I just want to give up but once I get through the first few hours I seem to get bit better. I certainly guilty at times where I think ooh I feel good today and over do it to just suffer that evening and possibly the next day.
    Sorry if it feels like I am ranting a bit on here but trying to gind answer or others in similar situations is a night mare.
    Thanks for the article, reading it really helps me identify with someone know I am not alone in the way that I feel. To everyone else, take care of yourselves and keep going. I’m a stubborn guy and refuse to let this beat me but it’s certainly a challenge.

  23. This is so on the money for me. I had a non-functioning tumor as well, and for 6 yrs tried to find a doctor to listen to me tell them “Listen, something is off. We need to figure out what IT is” and then finding that one Neurologist who did. Watched the macro-adenoma for 3 months, to discover it had grown 20% and to have it removed, and the pituitary went along with it unknowingly to the surgeon. Then seeing the self I knew drift away farther and farther, day by day. You were able to write what I was feeling and still feel, to a “T”. My husband always supported me, but my surgery was in 2002, and for the past 14 yrs out of 16, he thinks the “illness” is over, and doesn’t why I can’t just get over it. He doesn’t understand, and I don’t think he will. But that’s ok, for the most part I understand. Sometimes I am treated as a Hypochondriac, or worse that I make excuses to get out of things. Couldn’t be more wrong. I long to feel normal, my normal, of what I used to be. So I have to accept the new me, which is very difficult. Thank you for the article, you understand !

    1. I’m not glad that others have a similar condition to mine as I would not wish on anyone but glad others understand what I’m going through. At times I question myself and try to work out if I’m faking it without knowing. Even immediate family at times treat in a way that I’m being treated so what’s wrong now!!! Reading others experiences certainly helps me keep kinda sane. I’ve only been managing the condition for the last 3 years but except it to a level that I will never be who I was before. Always going to be difficult. Luckily I do have support around me otherwise think I would be in pieces.
      Can’t do everything I used to but do try to keep some interests going to fight the depression. Find your strengths and strategise around them. Won’t always work but feel it makes me feel better when I contribute within my means

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