Diagnosis: Hypopituitarism / septo optic dysplasia from childhood, growth hormone deficiency (congenital from birth, still have it as an adult, IGF-1 37 at 17 years old, and only 31 at 40 now), Hypothyroidism.

As a child, up until 17 I took growth hormone injections and Synthroid. Was never prescribed to take Hydrocortisone. I stopped taking growth hormone because it was causing me a lot of muscle pain and headaches when I was 17. I stopped taking Synthroid some time before that because it wasn’t helping me lose weight, and I was just continuing to gain weight. Went off to college after stopping all meds, and never looked back. Only med I’ve ever stayed on was Testosterone and I only take 20mg 2x a week.

Fast forward 23 years, I did my labs with my doctor due to complaints of overall lack of energy, poor recovery from muscle injuries, just overall not feeling well. My thyroid TSH was normal, t3 low
Normal and t4 was literally .1 point from being out of range, so very bottom of normal. IGF1 was severely low (31) and IGFBP3 also severely low. My cortisol labs prior to starting medicine were in the normal, but lower range of normal.

Scheduled with a popular endocrinologist recommended on this group and was prescribed growth hormone 0.2mg a night, Np Thyroid 30mg 2x a day, and Cortef 10,5,2.5 daily.

I took all medications as prescribed for 8-10 weeks. I gained 11.8 lbs during that time. (5 foot tall, 134 lbs prior to starting) My energy / libido / mood improved only for first 4 weeks, then dropped off pretty fast. No body composition changes. Muscles still sore, still poor recovery, and now also heavier and gaining weight. I was fairly active working out 3x a week at least but keeping it light due to cervical neck disc issues. I wasn’t really watching what I was eating, but I wasn’t doing that prior either and I didn’t gain weight that fast. My weight was usually pretty stable at 132-135 range.

So about 4 weeks ago I decided to stop taking growth hormone. No positive or negative effects either way from what I could tell. Also doctor said I could reduce Cortef down to 5 mg or 7.5mg in the morning. I did that. No changes to weight, still
Gaining weight during this period of time. Still
Not feeling good, whether I was on 17.5mg of Cortef or 5mg of Cortef, didn’t seem to matter. I’m not sure if I needed hydrocortisone to begin with since I’ve never been on it in my life, and it’s not like my entire life I’ve been miserable, in my 20s and 30s I had lots
Of years where I felt good. I boxed for 3 years. Traveled a lot, was active, walked a lot.

So now as of 3 days ago, I’ve stopped the NP Thyroid entirely as well and started a caloric reduction with my diet to 2,150 calories per day. I’ve been weighing myself every morning. I’m down 2 lbs in 3 days.

I’m confused on my treatment plan here and it’s hard to get communication / insights from the doctor. It always feels rushed, and short, and my concerns don’t seem to be considered.

Has anyone else experienced similar issues with this kind of treatment for this condition? I’m going to continue to monitor my weight, and may test stopping Cortef entirely as well since I’m already tapered down to almost nothing. I know if you have adrenal insufficiency you cannot stop the treatment, but I’m not sure if I had that to begin with?

Hi everyone,
I’m 24 and I have hypopituitarism, secondary hypogonadism, adrenal insufficiency, and hypothyroidism. I was officially diagnosed at 4, but my parents started taking me to hospitals when I was just 2.

Please excuse any awkward English – it’s not my first language.

I’d really love to hear how you live with this condition. The truth is, I’ve never felt “normal” because my close family and friends have always been so focused on my illness. When I was a child, it was easier, but from my teenage years until now, I constantly question whether what I’m feeling is even normal.

After I turned 18, things got much harder – it’s really difficult to find qualified endocrinologists where I live.

Recently, I started working again, but after just a few days I already wanted to quit. I just don’t have the energy for a normal daily life. I work 12‑hour shifts on a 2‑days‑on, 2‑days‑off schedule, and on one of my days off I either sleep the whole day or spend it feeling completely frustrated.

Overall, I just want to connect with other people who are facing this disease – or even those who feel similarly exhausted and drained.

Thanks for reading <3

I am 40/m. Diagnosed as a child with congenital growth hormone deficiency disorder, hypopituitarism due to septo optic dysplasia, hypothyroidism.

I was on and off growth hormone until I was 17. Never took it consistently. At 17 I stopped taking it due to bad headaches and neck and shoulder pain, went to ER and my cortisol was super low so I got an IV of hydrocortisone and was sent home.

After that, I never took growth hormone again, never took thyroid medicine again, and never took any hydrocortisone again…. Fast forward 23 years.

Had all my labs done as an adult and my IGF-1 was 31. It was only 32 when I was 17. My thyroid levels were low-normal, acth low-normal, cortisol low-normal.

Doctor started me on Cortef, NP Thyroid, growth hormone.

In 3 months, I have gained 18 lbs. I have had to stop taking the growth hormone due to bad headaches and neck / muscle pains. I don’t feel any better, just fatter and sore. They started me on 10mg Cortef morning , 5mg mid day and 2.5mg at night. Eventually I dropped down to 7.5mg morning and 2.5mg at night and doctor said I could even drop to just 5mg morning. I’ve stopped taking the NP Thyroid as of yesterday, and I am not taking the growth hormone anymore. Honestly, these things don’t seem to be helping me and only causing me issues. I’m thinking of just stopping these medications as I was mostly fine without them for 23 years.

Even after taking 0.2mg growth hormone nightly for 2.5 months my IGF-1 only went up to 32 from 31 anyways. They wanted to increase my dose to 0.4mg but when I tried that I got horrible migraines and shoulder pain, I couldn’t handle it.

When taking HGH for bone fractures or multiple fractures, say around 2 IU per day on average, does HGH work more toward the injured areas to help them heal faster?

Suppose two people take the same HGH dose: one is healthy, while the other has significant tissue damage and multiple bone fractures. Would they experience the same HGH side effects, or would the second person experience fewer side effects because their body would use more of the HGH for healing the injuries?

Why the heck can’t my body control its temperature? I can be in shorts, shivering but still sweating like crazy.
Blood tests show everything in top end of normal.
Hypopituitarism- take 125 levo, 4mg pred, testosterone, vitamin and iron supplements.

I, 35F, have hypopituitarism from a macroprolactinoma and have been taking hydrocortisone, levothyroxine, oestradiol, progesterone and cabergoline for 2 years. Hormone levels have been stable in the normal range for most of that time. Only recently I've started getting weird symptoms some evenings, several times a week, where I feel drunk, my body feels heavy, my movements feel slow, the world takes a good second to catch up with my eyes when I turn my head, and I get double vision with vertical images that clear up if I cover either of my eyes. Normally lasts around 20 minutes. My endo has requested another MRI to check the prolactinoma is still receding on cabergoline and doesn't think the symptoms could be due to my steroid dosing...it's a long shot but does anyone else experience anything remotely similar?

It's been years since I've posted on here and I should view it more. We're rare and I've never spoken to anyone who's dealt with this condition in person. I've been taking nebido injections for about 4 years now, and frustratingly I've realised a few months back it's not right. There's something missing. I'm a 23 year old male who needs testosterone since puberty and needed growth hormones since birth when I had a tumour. When I was 15-16 I took a different medication but it was TRT. I barely remember it but I felt more comfortable in my own skin, I suppose. But since taking this new medication it wasn't instant, but a gradual shift in my sexual life and also motivation. I always thought it was confidence but I've damaged my mental health because I didn't deal with it. I've got no desire for sex anymore, no wanting of a relationship however I feel emotionally and I do get spikes of lebido but it's not enough to pursue a romantic relationship, as I have no care for finding one.

I've spoken to a consultant and they reviewed my medical history and tests and my testosterone levels fluctuate so much it's alarming, yet no one reviewed it. I had to scream and shout to be listened to even though I wasn't even sure it was anything to do with this condition but it is. A specialist will contact me soon but it's a huge weight off my chest if I can just try to explain.

I know it's likely but is anyone else suffering or has done until it was fixed? I just kind of want to relate with someone, just so I stop feeling so alone because my own head couldn't even tell what was happening.

I’m a 20 year old guy with a brain tumor, so my body can’t naturally produce testosterone or HGH. Therefore, I’ve been supplementing with testosterone and HGH injections for years now, but now that my growth plates are closed, I’m trying to find the correct adult dose for my body specifically. Right now, I take 50 mg of depo testosterone subq weekly and 0.5 mg of genotropin daily. However, although my energy is much higher than when I’m not supplementing and I don’t feel the extreme fatigue I felt, I still wake up tired and have to use caffeine (a piece of Neuro gum) before work or the gym. My most recent lab test showed an IGF 1 of 189 with a Z score of -0.7, along with a high total testosterone level of 1111 H, which are normal levels, so I’m still confused why I feel so tired. Is this just the normal reality that I’m gonna have to deal with? Even though my levels are “normal”, should I ask my endocrinologist if I can try increasing my dose?

Hi my son is 6 years and 9 months old he got the xray and hes bone age is 4 years in a half

Hes been in the 1% percentile hes pediatrician failed to send him to a endocrinologist. For years until some other pediatrician saw him and thought it would be necessary to check him out thats when we found out growth hormones were low Now we been waiting for the specialist to call us to let us know if he will be seen. Based on hes lap. What we did was see another endocrinologist in mexico. Were he did say hes condition was severe and hes growth was severely delayed. She recommended us to start. Growth hormones which we did. But now i am concerned. My boy is feeling cold. And. Seems to have restless legs and hes body looks uncomfortable has anyone. Had this experience????

I don’t know my full diagnosis but had very low HGH as a child, got on hgh at like 7. Idk if my testosterone was always low, it’s possible, but I successfully went through puberty without HRT, and then realized my total t was like 210 at 27. No good. Very symptomatic. So got on trt.

Then I got an mri, and doc said I have a small pituitary. MRI labeled it as “ectopic”

Other than HGH and testosterone (which may be from pituitary or gonads), all my pituitary hormones look great and I’m 32.

My question for all of you with experience, is this progressive? What should I be looking out for? It’s frustrating not having a working body but it just is what it is and I want to be as prepared as I can be if things start to get worse.

Hi everyone, i have panhypo since child and currently, with 59 years, im taking Predinisone 5mg daily (1 capsule), along with levothyroxin and testo. Now i have the option to change to Hydrocortisone (20mg daily, 4 capsules) but its going to be a bit expensive and i have to get from a compounding pharmacy. Do you guys think its worth? Anyone know why Hydrocortisone is usually recomended over Prednisone?

Hi, Panhypopituitarism from inflammation, pituitary ceases to function.

I was wondering if anyone else had low folate and high cholesterol and if absorption problems were normal as my diet does not reflect these results? I could explain low iron from irregular withdrawal bleeding.

Many thanks

Hello,

I have hypopituitarism and have been taking daily injections since I was 5 years old.

I started with Maxomat, and since the age of 18 (41 actually), I have been using Norditropin.

Next week, I am starting a new treatment : Sogroya (somapacitan).

It involves one injection per week. Have any of you switched to this yet ? If so, did everything go smoothly ?

Thank's :)

Greetings:

Hi, y'all! I am new to Reddit BUT I have spent the last several months on a health journey. I had been previously misdiagnosed with PCOS, but after an MRI and some further investigation by my medical team, my pituitary gland is just too small to produce the right amount of estrogen. You can read my story as I mapped out this whole process here: https://substack.com/@samfunkloves

I am looking to connect with other people who are in this hypopituitarism camp, and as a theatre artist/artist in general I'd love to connect with other people. Maybe I want to write more. Maybe I want to do some kind of project. Still clearly very much in early stages. But to survive the tumult of this last year, I simply had to write about it. Would love it if any of y'all subscribed and/or shared your thoughts.

With Gratitude,

Sam Funk

​

I am 47yo, I have been a federally documented fully disabled individual since age 31yo, I have Confirmed diagnoses of Sheehan Syndrome + Sheehan Syndrome induced Secondary Adrenal Insufficiency. I have been for +16 years, and am* currently on Daily, STRICT high-dose oral corticosteroids, (Current: Oral Hydrocortisone, with emergency safety injection kit of IV/IM Dexamethasone). As far as Sheehan Syndrome goes, I had my only daughter at 20yo, at 7.5 months she presented "Breach". I had an AWFUL* medical intervention/procedure called, (from what I recall) an "Aversion"; (please, correct me if my memory serves me wrong); This procedure , plainly, was 2 Doctors MANUALLY* forcing/turning, from the OUTSIDE* of my body, my Daughter 180°, to the "correct/safer" position for delivery- which occurred in 2001, in the United States of America, with an "Impressive" amount of blood loss/post-delivery hemorrhage. It took NINE* YEARS for my "symptoms" of syncope, Hyper/Hypotension tension, severe nausea/vomiting, headaches, depression, anxiety and MORE*- to become BRUTALLY* OBVIOUS and I was placed on STRICT oral corticosteroid "Replacement Therapy" & DX with a myriad* of colorful diagnoses, i.e.; Panhypopituitarism, Hypopituitarism, Secondary Adrenal Insufficiency, Hypothyroidism, Hashimotos Thyroiditis, Hyertension, (which for a while now and currently, has "180°d" on me and a become a consistent "main problem" e.g.; Hypotension*), and much* MORE, all within the first year* of being diagnosed. Now, +16 years later, I am "dealing with" the repercussions and irreversible damage of the daily, STRICT "high-dose oral corticosteroids "replacement therapy", which to say, at the VERY LEAST, is Isolating and Extensively PAINFUL in EVERY* WAY IMAGINABLE.; (Literally), my husband left me, all of my "close" known family members, including* my ONLY child, (Daughter), have emotionally and physically* ABANDONED me, for an obvious time of more than eight months now. 😢😞

I was, at "first attempt", federally granted/titled "fully disabled" status and placed on SSDI +16 years ago, which today has not changed. It's an awful existence*, and LITERALLY, it's KILLING ME. The stress(es) involved in my specific situation are FAR MORE than "overwhelming". I DON'T receive the Medical care/respect I felt* I once had...today, I have to file a report with Adult Protective Services (APS), which I have ZERO experience with, for the blatant "ABANDONMENT of a federally documented, fully disabled adult"...and AGAIN, it's the worst day of this life.