Don't know what to think

[Guest Pam]

I recently saw an endo because I have been dealing with several issues for the past 10 years and haven't gotten any results. After I had my 2nd son I had lost my "baby" weight then about 1 year later quickly put over 70 lbs. on, I am extremely fatigued and have no energy, I wake up in the morning and have to drag myself out of bed, when I get home from work if I sit still I fall asleep, at around 9 pm I get a burst of energy and cannot get to sleep until about 11 pm or later. In addition to that my hair mysteriously became curly, I feel like I am disconnected and I have had kidney stones and issues with my period being cyclical (frequent and heavy during the winter and lighter and infrequent in the summer) as well as my temperature gauge being out of wack - either I am too hot or too cold, very rarely do I feel comfortable and usually everyone around me does not feel the effects of the temperature as greatly as I do. I have been told it could be PCOD, perimenopause and that it is all in my head. I had ablasion for my heavy periods and now I am not experiencing the flooding that I did have. I am trying to take control of my life and I need to find out why I feel like I am 80 years old and I am only 41.

 

When I went to the endo she listened to my list of issues and did a physical exam and brought up Cushings, which I had never heard of. I was thinking that it was a hormone issue and was leaning towards thyroid. She ordered a battery of tests and here are the results that were close to or out of the normal ranges:

 

Chloride: 107 range 98-107

BUN: 19 range 7-18

Creatinine: 1 range .6-1

BUN Creatinine Ratio: 19.6 range 10-20

Calcium (just because I think this may be important) 8.8 range 8.5-10.1

HDL: 30 range 40-60

Direct LDL: 104 range <100

Cortisol 10:00 am blood test: 9.3 range 7 am to 9 am 4.3 - 22.4 (note: the ranges for 3 pm - 5 pm are 3.1-16.7)

Midnight Cortisol Saliva: .10 range 10 pm to 11 pm < or = .09 (note: the ranges for 8 am - 10 am are .04-.56)

Midnight Cortisol Saliva: .13 same range

Dex Supression Test (8 am blood draw): .70 range 7 am to 9 am 4.3 - 22.4

Vitamin D, 25 Hydroxy Total: 11 range 30-100 (Endo immediately has put me on 50,000 IU of Vit. D 3 x's/wk)

 

TSH .806 range .358-3.74

Free T3 2.87 range 2.18-3.98 Free T4 1.02 range .76-1.46

CBC all within normal range

 

The doctor did the Dex Test suspecting Cushings and after researching the symptoms I feel that it could be a possibility. After the Dex test she sent me a message that said it is not Cushings Disease and we would discuss at the next appointment. I am not sure what to think; is it possible that I could have Cushings Syndrom and suppress? Any ideas what it could be? Since the blood test and the midnight cortisol test ranges are different I am not sure what to think since she had these results when she ordered the Dex Test; my theory is that the cortisol isn't going up and down like it is supposed to, could it be cyclical - especially considering my cyclical periods? Any suggestions and advice would be much appreciated, I am so tired of the medical establishment and am tired of feeling like an old lady.

[JenS]

The dex suppression test is a lousy test of exclusion. Most of us have failed it (myself included) and found later we did have the disease. So I am not a fan of the test.

 

The blood tests should have been 8am fasting - so that is incorrect. You are actually a bit low.

Midnights are supposed to be much lower than a morning reading. Your midnights were higher than your morning reading. The doc should have picked that one up.

[BDen13]

hmm, 2 out of 2 high Midnight Cortisols is getting close enough for diagnosis by a proper endocrinologist. I would ask for a 24 Hour Urinary Free Cortisol - if that comes back high too that should definitely be enough for a diagnosis.

 

Your current doctor is not using or interpreting the Dex Suppression test properly - if you did suppress, that just rules out adrenal cushing's. You could still have pituitary cushing's, which is more likely anyway.

[patvytpit]

Welcome Pam. Please join us. I love the curly hair thing. Mine has not only become curly but the color has darkened. I would suggest that you do some reading. It will help you. Read up on the dex suppression testing and why it is not the be all end all for cyclical cushings. Research the best testing methods for cyclical cushings. No offense bden13, but I have never had a positive 24 hour urine and I have had cushings a long, long time. Print out some of your research if you think this endo will be receptive. Don't be afraid to ask for the tests you would like to have done. If this doctor wants to help they will usually be open to that.

Get and keep copies of all test records.

Good luck,

Pat

Make sure to have your testosterone checked to rule out PCOS. You can have them both.

[BDen13]

I only suggested the 24 Hour UFC since it's a different test and if both Midnight Salivaries came back high I'm guessing the 24 Hour UFC would too. Even endocrinologists who know the disease like at least two different types of tests to come back abnormal before giving a diagnosis. I don't think it's a be-all-end-all test either because it doesn't take into account the lack of diurnal rhythm (you could be normal in the morning, then high in the evening and the 24 hour total could still come back high-normal, yet still have cushing's).