It's been a tough journey. 40/m with Septo-optic dysplasia (SOD) + panhypopituitarism + Congenital GHD + Hypothyroidism
I am 40 years old now and I'm just starting to go back down this rabbit hole. I just obtained my Childhood medical records in the past two weeks after being under-treated and not properly diagnosed for the last 23 years.
I remember as a kid always being very small. I always looked younger than I was. Mostly blind in my left eye except for peripheral vision. I was in and out of the hospital a lot doing lab work, various tests, etc.
I was diagnosed by All Childrens Hospital at the age of 3 with Congenital Growth Hormone Deficiency Disorder / Septo-optic Dysplasia, panhypopituitarism, hypothyroidism, hypogonadism. I went through all the MRIs and scans which came back clear. From the age of 3 to 17, I am almost certain my Mother was supposed to give me Growth Hormone Injections, but I remember only getting them a handful of times, as she sold them to wrestlers and body builders instead. I also remember taking Thyroid medication, but wasn't consistent. My mother was never consistent. I believe she stopped having me take thyroid medication all together when I was around 11-13 years old. My records show that my bone age was always 1-3 years behind but then it caught up at 17.
At the age of 17 years old, I had a medical emergency. Reported headache, dizziness, pain in neck, etc. I went to the hospital and they re-did all my labs. My IGF-1 level was only 39. My cortisol level was 1. They gave me some IV cortisone and sent me home. They re-confirmed in my medical records all of my previous diagnosis.
Shortly after this, I left my mom (finally) and went off to Arkansas to go to College. I wasn't taking anything, no meds of any kind. I remember going to see a doctor, and I mentioned Thyroid issues when I was a kid since it was mostly all I could remember, he gave me a lab test for TSH, said it was normal, and that I didn't need to take Thyroid medicine.
Fast forward many years later. I was struggling with depression and anxiety, especially after my son was born (Surprisingly I was able to have 1 child, he is 12 now) I go to a new family doctor, he checks my Testosterone, and says I have low T (Low 300s) this is when I was 28 years old. They put me on TRT 100mg every 2 weeks. It did help with my very severe depression and anxiety around that time.
I continue to take TRT supplementation all the way up to the present. I never really change much physically. I notice a slight increase in energy maybe, but nothing substantial. Body wise... I still look like i'm younger than 21, I never really lose visceral baby fat, grow patchy/fuzzy facial hair. I just never feel 'good.' Over the last few years... All of my cardiovascular labs have continued to worsen. Apob is high, cholsterol is high... Eating better, working out 3-4x a week, no matter what, they continue to get worse. Inflammation is high, sore joints, muscles, I still deal with depression and get very easily upset when I'm stressed. It's like my body is in constant fight or flight. They have tried me on different dosages and variations, and I will notice small changes, but never to the point of 'Oh I feel great.' I would also be very sensitive to TRT, so if they bumped me up to let's say 100mg a week, instead of bi-weekly, my total testosterone would shoot way up to 1200-1600 range.
So I had my labs drawn again 2 weeks ago, for the first time in 23 years, I had my IGF level tested. It was 31! Severe growth hormone deficiency. I pulled my childhood medical records and realized that I have been diagnosed with all of these things since the age of 3, and I may have spent the last 23 years under-treated, not being properly tested, and suffering when I may have been able to do something about it. Now I am trying to sort through getting the right specialists to see where everything is at now, and what all I can take to get my life as close to normal as possible. I don't even know what it's like to feel 'good.' I have stopped taking the TRT as of 4 weeks ago just to try and get my body back to a baseline so that I can talk to a specialist and get on the right track across the board.
Should I be taking Cortisol?
Thyroid medication?
Testosterone?
I'm now trying to figure all of this out and it's pretty overwhelming.
I suffer from lots of back pains, achy joints, digestive issues (for the last 15+ years), depression, anxiety... You name it. Just constant fight or flight.
Happy I found this subreddit as it feels good just to vent all this out. 🙏