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What Do I Do? Diagnosis? Help
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What Do I Do? Diagnosis? Help

So, I have some questions.... I have been suffering for a year and a half with a boatload of symptoms first shrugged off as fibromyalgia, then when I experiences visual and nervous system symptoms they did MRI and found Chiari malformation which I had surgery for, but through the entire process and my research I've requested hormone labs because I expected pituitary problems the entire time because its the only thing that fit everything. My doc told me No to hormone testing because we had done too many tests and he didn’t want to keep chasing nothing anymore… so instead I had brain surgery!!

I began deteriorating the worst a month before surgery and lost 30 lbs in 1 month and was so nauseated they thought it was severe brainstem compression, and I had surgery, was re admitted for high pressure and they put me in 4 Mg of prednisone 3 x  a day for like 3 days and a then a taper that only lasted  a total of a week and it was the first time in a year I felt normal and could stay awake past noon. But once I tapered of I didn't feel as good and then went right back to feeling how I did before surgery as far as fatigue and nausea. My main Chiari symptoms are now gone and I believe the surgery was a major success and no more severe headaches or blackouts…but I began losing weight rapidly again and not able to eat anything at all…So I again requested hormone testing and they finally did... I was still rapidly losing weight and nauseated and unable to eat..so I waited another month and lost 20 more lbs and took another lab same result Cortisol just very low...and same result in my progesterone all my hormones are low and haven't had a period in 4 months now and not pregnant, used to have normal periods..they did a stim test but lost it, and I was started on hydrocortisone to take all at once in the morning at 20mg but was not told why and it is definitely still not enough I take it and I crash hard at 2pm sometimes before then and can’t even stay awake or eat anything after that because I am so nauseated.
Before my symptoms began I had a grand mal seizure and hit my head on concrete very hard causing major concussion and contusion that I had to be monitored overnight, I had mris and this is when my symptoms began and when I'm thinking possible pituitary damage....
My endo today said he knows its my pituitary not working since my labs are as follows: My first plasma am Cortisol was 1.9 (6-24)
Acth <5 (0-45)
Progesterone <.1 no ref given
Testosterone 39 no ref given
Estrogen 62 no ref given
Fsh 5.7 no ref given
Lh 5.6 no ref given
Tsh 1.0(.4-4.0)
Free t4 .8 (.8-1.8)
this was before being put on any Cortisol replacement..the medications I was taking at the time of testing were Ms contin 2s per day 60Mg, levothyroxine .025mcg , topamax 100 Mg 1x day, and ritalin 10-20Mg to stay awake. Doc thought the Cortisol was low due to me taking a small dose of prednisone for 1 week a month prior and told me to wait and re test in a month... So I waited, now two months from my last 4Mg dose of pred and r tested... All same ref ranges.
Cortisol am 2.1
Acth < 5
Acth stim - lost the result and when they found it, it was too old to test.
Estrogen 58
Progesterone <.2
Prolactin 5.1 no ref range given
When I got my second labs the doc called in a script for hydrocortisone 20Mg to take in the morning he have me no extra to stress dose or gave me any further instruction on He thinks its temporary because he doesn't see anything wrong physically on my MRI with my pituitary that was done looking at my Chiari, and he thinks its due to me taking morphine daily due to my pain, which I think is actually caused by low Cortisol go figure because the only thing that helps the pain is injections and the Cortisol seems to help the pain also....I asked him well why then do you think I've had all of these symptoms BEFORE starting any steroids whatsoever and before starting any opioids? He said well there is nothing saying you had low Cortisol before... But I have been having the same symptoms and same weird thyroid labs for over a year and it seems quite a coincidence that it all started happening after my seizure and concussion, I asked about post traumatic brain injury and the pituitary and the studies out there and he said he was impressed with all my knowledge on the subject, and said I can go on birth control to replace my female sex hormones if I want, but I have a history of blood clots in the family and genetic factors that increase my risk of developing and was told by a hematologist not to take birth control....I asked him what to do and he said wait a month, stop taking your thyroid so we can re test that, talk to your primary about taking a stimulant so you can stay awake and hopefully magically all of you're problems including this exhausting and excruciating pain you are in will all go away by itself when your pituitary starts working. He says I will just not take the hydrocortisone that morning and then go to Lab and test to see if my Cortisol levels or acth levels have improved. I can't go to another doc because I can't find one that is accepting new patients with my insurance that isn't 3 months out....I want  to test and replace my other hormones so I can feel normal and function, I have a 2 & 4 year old at home and am a single mom, I can't just wait this out! what I do?
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Everyone has to wait for endo appointments. I would go ahead and get on the waiting list - but make sure it is a neuro-endo at a pituitary center!
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