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ask: Could I still have Cushings?

By Anonymous
 
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Hi, I have had two UFC done and both showed elevated Corticol levels one 645 and the other 684. I had a dexamethasone suppression text done and that was 81 (over night test) I then had a 48 hour test done and that came back as 20. I am awaiting results from a ATCH test but my endocrinologist was adamant that everything is fine and there is nothing more she can do. Sounds great I know but I am so tired, I have put on a lot of weight and can't shift it despite eating very carefully and being very active. I can sleep for up to 15 hours and lack energy. My hair is thinning I take ages to heel from cuts and bruises. My thyroid has been tested and that's fine! I am vitamin D deficient and was given a weekly 40,000 unit dose to take for four weeks. I am an insulin dependent diabetic but my last H1bac test was 47 so my control is good. But I am needing to inject more than I ever have before sometimes up to 80 units just to keep my levels at an acceptable level.

Help! My endo says there is nothing more she can do! I'm needing some guidance. She said I need to speak to my gp to get a referral to someone else but when I asked who I should be referred to she didn't know. It was a very frustrating phone call and I honestly feel I am getting no where. My memory is aweful, I am not depressed! what should I do!?

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EmpowHER Guest
Anonymous

Hello Maryann and thank you for your quick response! I have many of the symptoms of Cushings but an endo who is adamant I am fine. I'm 30 years old and sleep far too much! I tend to have to drag myself out of bed. I'm really just wondering if it is possible to still have Cushings (of either variety) despite having a blood test from a 48 hour test come back as boarderline normal. I know it sounds daft but these symptoms seem to fit me. My cortisol levels have been high but despite three high test results the fourth one that was normal-ish is the one they are going with. Yet when I asked why there were three false positives my Dr could not answer. I will deffinately ask to see someone else as the last consult I had she left the room three times to ask the consultant! Anyway I guess I was just wondering if I could have Cushings and have my cortisol level suppressed by taking 48 hours worth of dexamethasone tablets!?!

Thank you for your quick response!

Sara

June 14, 2013 - 4:14am
Maryann Gromisch RN Guide (reply to Anonymous)

Hi Sara,

I looked up some more information regarding a dexamethasone suppression test and hope this might give you some answers.

It is important to point out that the normal value ranges may vary slightly among different laboratories. Some labs use different measurements or may test different specimens.

Cortisol levels should decrease after you receive dexamethasone.

There is a low dose test and a high dose test. The low dose test looks to see if your body is producing too much cortisol. The high dose test helps determine whether the problem is in the pituitary gland.

Standard low dose overnight method: you are given 1 mg of dexamethasone at 11 pm and blood is drawn at 8 am. Urine is collected over 3 days. On day 2, you take 0.5 mg of dexamethasone by mouth every 6 hours for 48 hours.
Normal results are less than 1.8 mcg/dl overnight and less than 10mcg/dl urinary free cortisol on day 3.

Standard high dose overnight method: your blood is drawn in the morning. You receive 8 mg of dexamethasone at 11 pm and your blood is drawn at 8 am the next day. Urine is collected over 3 days. On day 2, you receive 2 mg of dexamethasone by mouth every 6 hours for 48 hours.
Normal results are greater than 50% reduction in blood cortisol overnight and greater than 90% reduction in urinary free cortisol.

I hope this is helpful,

Maryann

June 17, 2013 - 5:09pm
Maryann Gromisch RN Guide

Hello Anonymous,

It is apparent that you are frustrated and understandably upset.

Your endocrinologist can best interpret the test results and tell you if have Cushing's disease or Cushing's syndrome.

Cushing's syndrome can be difficult to diagnose. The classic physical signs of Cushing's syndrome include rounding of the face or moon face, a pad of fatty tissue between the shoulders and neck or buffalo bump, and thin skin with bruises and stretch marks.

Cushing's disease is a specific form of Cushing's syndrome. It occurs when a noncancerous tumor on the pituitary gland produces excessive amounts of ACTH or adrrenocorticotropic hormone.

Since Cushing's disease is a form of Cushing's syndrome, many of the symptoms of Cushing's disease are the same as those for Cushing's syndrome.

Patients with Cushing's disease will have streaking or stretch marks that appear on the abdomen, thighs, buttocks, arms and breasts. They will quickly gain weight despite controlling diet and being active, just as you are experiencing. Women experience excessive hair growth on their faces and bodies.

If you are not satisfied with the level of care that you are currently getting with your present endocrinologist, I suggest that you get a second opinion. Ask your general practitioner for a referral. Be honest about your experience.
If two medical professionals agree on the diagnosis and prognosis, then you will at least have some answers.

All the best,

Maryann

June 13, 2013 - 5:08pm
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