Endocrine Disorder, feeling alone

Wh

Whitney

I always knew that people with chronic illnesses dealt with depression and anxiety, but I didn’t really understand the severity of feeling so alone until it happened to me. My whole life I’ve had mental health issues (I’m starting to think it’s actually caused by my endocrine problems) and now I’m having an increasing amount of endocrine issues. I was diagnosed PCOS a long time ago because of my completely off the charts and out of balance LH/FSH levels, but no cysts showed on any ultrasounds. I’m seeing an endocrinologist, but I’m playing the waiting game and still doing diagnostic testing. I had about 20 vials of blood taken, plus a thyroid ultrasound. My WBC count was up and my platelet count went down. I’m probably going to go ice my doctor to do an MRI for my pituitary and a bone density test. I’m currently on FMLA/STD because my job is stressful and more stress=more endocrine problems and I already have an anxiety disorder. It makes the loneliness all more apparent. My mom is loving, but doesn’t understand. I have good doctors, but even my mental health therapist is completely out of loop with this kind of stuff. She said “why would you have growth hormone issues? You’re 30.” Like, what? I’m starting to think I have McCune Albright Syndrome (I also have huge cafe au lait birthmarks), a mild case. The G protein was officially discovered the year AFTER I was tested for endocrine issues as a child, so I missed the mark on being checked for a whole slew of disorders. I feel like I’m going crazy, but I know I’m not. Does anyone else deal with these endocrine issues? How long did it take you to get a good diagnosis (aka I’m not taking BC pills because I think that’s only covering up a symptom of the bigger picture)? How many specialists and second opinions did you get? This is really an open discussion, even if you have an adrenal issue, pituitary issue, etc.

173 views • 1 upvote • 6 comments

COMMENT (6)

Ki

Posted at
But if you ever need anyone to talk yo feel free to message me.

Ki

Kiara • Jun 29, 2019
Well at first they told me it was from being over weight but in 2017 I was diagnosed with MCTD. Which is basically lupus, RA, raynauds, MS. A mixture of autoimmune diseases.

Wh

Whitney • Jun 29, 2019
I will definitely do that. I haven’t been on this app long enough to DM, but I will. What was the fluid from? I have all sorts of random issues, that’s a possibility.

Ki

Posted at
My pituitary gland was out of place due to fluid.

Ne

Posted at
i have PTSD hypo adrenal hypo thyroid adhd and they are all ptsd related. a weighted blanket helped my nervous system and a puppy been 2 years off work disabled. im better a month now. you will get better but need to have a lifestyle change no stress no toxic people not tv etc just a zen life and new routine forever.

Le

Posted at
hi! i actually have CAH, which has very very similar symptoms to PCOS and leads a lot of women to be diagnosed with this. although i have the classic form, it wasn’t severe enough to be caught on my newborn screening, but they diagnosed me at 18 months because my older sister has the same thing. it can be a lot and i have mood swings, but i take medicine 3 times a day to regulate cortisol in my body. it’s a bit doubtful, but it could be a possibility you have non-classic, which is often diagnosed in adulthood. hope it helps :)