Unclear Cushing's diagnosis

Hello, I am a type 1 diabetic (for 12 years) and I was recently diagnosed with "high cortisol levels" by my endocinologist. He says that my levels (blood and saliva) are high enough to investigate Cushing's disease. This was all happening in early May of 2009 and I still have no real diagnoses, my endocrinologist is referring me to a specialist in Maryland, but they are yet to respond. I have been very insulin resistant for almost a year now and my blood sugar levels are all over the place (mostly very high) of course making me feel terrible. I am having very strange and bizzare symptoms including, sudden onset facial redness, weight gain, hypothyroidism (for which I am now taking 50 mcg Synthroid), severe sudden bouts of facial sweating (especially when I start eating), severe nausea and vomiting, headaches and annoying joint and body pain,insomnia, recurrant infections (UTI, sinus mostly), moonface, extreme weakness and fatigue, and in April of 2009 I had a sudden change in my eyesight (it became blurry and difficult to see far away), severe swelling in my ankles and feet, and hair loss. These symptoms are only getting worse and I am still waiting to hear from a specialist. I am worried about myself, my diabetes has always been very well controlled and I am really scared of what is going on with my body. I just don't know what to do. Any helpful suggestions would be greatly appreciated. Thanks,

Arie

[rumpled]

You should be thrilled that your doctor even thought to test cortisol. Your symptoms are pretty classic and you need to see an expert. Let's hope that the doctor that you are going to see is one.

I had pituitary Cushing's and know a lot of people with the syndrome. You need to get into someone as soon as possible. You will probably have to take more cortisol tests as well as imaging tests to determine the source (adrenal, pituitary, ectopic) as well as other hormone tests to as well help determine source and other issues (ACTH and other pituitary hormones, all thyroid, male/female, adrenal, etc). It is best to get a lot of testing done.

A specialist should send you for a dynamic pituitary MRI - with and without contrast and taking pics while the contrast is being given in order to best make the tumor show, if there is one.

You should also see a neuro-opthomologist and get visual fields for a baseline.

If you have pituitary or adrenal surgery, make sure you get a very experienced surgeon as it really impacts the outcome. Cushing's tumors tend to be soft and can be harder to remove and experience is really needed.

I would research the doctor that your doctor is sending you to and make sure he/she is a neuro-endo as that is what you will need.

[Akathrynbyrne]

Wow , thanks for all of the helpful advice!! I didn't even know that imaging tests were an option!

[ladyT38]

When you say ectopic, what do you mean? I get adrenal, pituitary, are you saying it is somewhere outside those areas? and you seem very educated on this subject, and I am glad you are on the board. I have had (2) MRI with and w/o contrast to check my brain and pituitary, because I have increased prolactin @ 66 and I have been told that my most recent MRI shows nothing, and I have had the prolactin levels checked and been sent to breast surgeons back in 2001 for the leakage, and told that an overstimulation of the breast can cause this. Okay, my husband lays off of them for awhile, and here I am after having my son in 2003 and I breast fed with this problem still here, and I want to know can anything else besides an adenoma cause thirs. I have been told that my symptoms are anxiety, because I was having really bad headaches, and just last week I was told that I have optic nerve damage or open angle glaucoma, and I do not have  a family history of this at all I was suffering from daily headaches so excruciating, I couldn't take lights being on or noise. I was seen by a neurologist who told me that my EEG was abnormal and could be a mass possibly that would cause it. I had another MRI because the first one was done in an open MRI and was not strong enough to detect a carrot growing out of the ground! So this imaging center got paid for providing a service that they knew their equipment couldn't come close to supplying accurate info. I had trouble conceiving, had abnormal periods in my early 20's and very painful ones in my teens. I started gaining weight in my teens and have pretty much been heavy . I was in a car accident in my teens and I hit my head in the windshield pretty hard, when I was 17 and no ct scan or anything was done at the hospital. I was sent home with paperwork, that I had a concussion. I would like to have my ACTH, Cortisol, and DHEA checked. I have had my LH and FSH checked and the doc says I'm not menopausal, I cannot just leave it there. And any test you could recommend why I have increased prolactin levels would really help me.

[rumpled]

LadyT, in the case of Cushing's, the ACTH tumor, can, rarely, be anywhere. In that case, the ACTH will be very elevated and then the doctors will have to scan for it.

I also had a prolactinoma and like you, I was told it was incidental, not to touch my breasts, that is was my mind etc. I had not had children though. That tumor hide for 12 (!) years when a proper MRI showed that I had 2 lesions, not just one.

Abnormal thyroid, medications or a prolactinoma to my knowledge can raise prolactin. Find another doctor. The car accident you had could have contributed to the damage to your pituitary.