Brain/Pituitary Tumors Community
2.19k Members
1076386 tn?1255967562

Could I have Cushings?

This November will mark the three year point that my symptoms have plagued me. I have an Endo that bases every decision on lab values.  During this time frame, I have had Amenorrhea - no menstral periods, not even spotting.  OB/GYN confirmed that it is NOT stemming from a Gynecological problem.  My hair has been falling out, and the last couple months it has gotten so bad that I rarely wash my hair, and never use a brush on it.  My family Doc does not believe this is a nutrition problem or anything else he can confirm.  I have daily headaches, exhautsed, horse voice, swelling in my face, my shoe size has gone up 2 sizes,

Some more concerning issues:

I have gained 110 pounds since onset, and I eat under 1200 calories, have never been overweight and there is no other medical issue that my Doc can attribute it to.  I sweat - All the time, mostly my face. My make-up slides off my face, and with any minimal movement, my face 'pours' sweat.  During this time, I have been diagnosed with Fibromyalgia, but I am thinking the pain could be due to this undiagnosed endocrine problem. The worst part of the weight gain is that it is all in my stomach.  EVERY DAY, I get asked when I am "due" as in, when am I going to have the baby.  It is very humiliating to say the least.  My legs, arms, but, - all skinny, upper back and stomach has all the weight.

ALL the symptoms for Cushing's reads like my health record.  Problem is, my lab values, while 'high' are not high enough to get my Endo wiling to test for this. He has agreed to run some more tests, but in the meantime I really need some answers.  I have already lost 3 years of my life.  I need guidance, because where I live, unless I hand the diagnosis to my Doc, I really can't get much done.

Last lab tests were two years ago. Sorry - This is all I have. I am trying to get a referral back to the Endo (I live in Canada and our health system makes it hard). My Prolactin was 34. Estradiol 77. FSH 8. LH 5.  Prolactin 5. DHEAS 1.9. Free T4 8.6. Free Androgen 2.2.

Additional Symptoms:

Neck & Back muscle spasms
Low libido, sexual drive or even interest
Hair loss (including Head, Legs, Eyebrows)
Skin feels cold, while I feel hot and will sweat profusely
Feeling overwhelmed/unable to cope - Cannot handle stress.
Excessive fatigue and exhaustion, chronic fatigue
Widespread Pain - Cannot be hugged due to pain.  Cannot walk without pain and stiffness, pain that wakes me up every two hours with muscle spasms.  Painful to roll over.  Have been unable to sleep in bed since.
Always 'Hot' or "Cold"- No in between
Difficulty concentrating,  brain fog
Anxiety - Shaking, Rapid heart beat, Nausea, facial sweating
Sleep disturbance, insomnia (Partially due to pain)
Very sore joint's (Dr. Diagnosed 'Carpel Tunnel Syndrome)
Frequent UTI's - Urinary Hesitancy
Hoarseness - Mild sore throat.  Feels as if there is a "lump",  Food, Meds, etc..get stuck.
Irritability, crying spells
Always 'Hot' or "Cold"- No in between

Hypothyroidism (Diagnosed 2007)
Amenorrhea - Since 2007
Hair loss (including Head, Legs, Eyebrows)

Any advice would be great.  As I stated, unless I tell the Doc what to test for, I am pretty much at the mercy of 'Lab Values'.  Thanks in advance!
2 Responses
Avatar universal
WIth the shoe size change, I would think acromegaly more than Cushing's at this point. Many of the pit tumors have overlapping symptoms, but you need to get yourself to a decent doctor, like a neuro endo, with pictures of yourself and get a good exam and get treated. But as I learned, you can have more than one endo disease, and I do know of someone with Cushing's and acromegaly together. You need a great doctor.

They now have meds for acromegaly now.

You need IGF-1, GH, ACTH, and Cortisol (serum and free, as in UFC and saliva) tests, and many of them, done properly, pronto, IMHO.
596605 tn?1369946627
I agree with Rumpled. But I wanted to add that the hair loss, fatigue and other symptoms point to hypothyroid.  If this is "lab value" type doc, ask him to run labs, lots of them including a complete pituitary workup.
TSH (thyroid stimulating hormone) along with a full thyroid panel, IGF-1, Cortisol and ACTH. If any of these point to a potential pituitary issue then there are more labs to do and an MRI would be logical. Get thee to a neuroendocrinologist like Rumpled said, ASAP.
Have an Answer?
Top Cancer Answerers
Avatar universal
Northern, NJ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.