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Guest Amanda

Advice/encouragment.

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Guest Amanda

I'm going to make a very long story somewhat short here.... I have had all kinds of health issues over the last 10-12 years that has lead me to many Dr's, mis-diagnosis and giving up on figuring it out.   Nov. 2018 my normal nausea and vomiting turned into turned into vomiting everything I ate or drank and by early Feb 2019 I ended up seeing my PCP.  She sent me for an abdominal CT scan as well as to a Gastroenterologist.   Blood work found nothing, gastric emptying study was only half completed because I got sick (but was normal).  The CT scan however showed a 4.4CM adrenal adenoma on my left adrenal gland as well as a few small nodules in my left lung.  I was sent for a follow up CT scan with contrast related to the adrenal nodule- adrenal mass 4.4cm  HU13 washout 79%.  I'm told this means that it's most likely not cancer or functioning.  I really don't know anything and I move on.  Still no relief to issues going on.   I go to see an acupuncturist and during the consult they mentioned Cushings syndrome.  I bring that up and my Dr blows me off.  I requested a referral to an endocrinologist, and am told no. A few months pass with no change  other than less control for diabetes.  Dr. says I should see an endo, however the endocrinologist denied the referral.   HMO's can be so horrible.   So I appeal it, they decide to test my blood cortisol 8 am.  It's normal.  Appeal was denied, followed by two more appeals.  The final appeal goes to an independent review board and they overturn HMO's ruling and I get to see an endo (this was just a couple weeks ago).  Due to Covid they are only doing phone appointments so no exam, endo was nice but didn't really think too much of all my symptoms or anything.  Kept referring back to radiology stating that it isn't cancer/functioning, but decides to run tests.

His notes related to tests, as well as results are below.  He was honestly irritated when I asked questions (mainly on ACTH, I asked what is considered low. He said there is no low ACTH), he mentioned he went to school an additional 6 years to be an endo..blah blah blah.   I am taking dexamethasone tonight, hoping that will help.   Am I crazy to keep pursuing?  Dr's and honestly family make me feel like I am losing it, making symptoms up. etc.
 
Screening overall negative
- 24 hour urine free cortisol minimally elevated -
- equivical results < 2 x ULN and not consistent with cushing's syndrome.
No change in her symptoms
Overall based on past work up and imaging - suggest this is a benign, non functional adenoma.
Given size - would merit annual biochemical screening and 1-2 imaging....
 
TOTAL TESTOSTERONE
4 ng/dL
DHEA SO4
24 mcg/dL
CORTISOL
7.9 mcg/dL
ACTH
7 pg/mL
24 hr URINE FREE CORTISOL
96.3 mcg/24hr (H)
TSH
2.17 mcIU/mL
NORMETANEPHRINE, 24 HR URINE
469 mcg/24hr
METANEPHRINE, TOTAL, 24H, URINE
505 mcg/24hr
METANEPHRINE 24 HR UR 
36 mcg/24hr (L)
ALDOSTERONE
5 ng/dL
RENIN ACTIVITY
2.63 ng/mL/hr
ALDOSTERONE/RENIN RATIO
1.9 ratio
 

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Hi Amanda,

Based on what you posted, this is a slam dunk. If they don't diagnose you quickly you should go elsewhere. The lit recommends removing anything over 4 cm. You actually have convincing biochemical evidence with a rather high UFC and concurrent low ACTH (<10 pg/mL). I'm assuming you're using Quest for the UFC since he said it's not 2x high. Most people don't get to 2x on LC/MS-MS with mild/adrenal Cushing's.  Let us know the dex results. The cutoff is 1.8 ug/dL.

 

Edited by nighthawk
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Guest Amanda

Thanks!.    Dex test came back 8.4.   Dr. Had me do another 24 hr urine with cortisol and acth the morning I dropped off.  Acth was 9.  Cortisol was 12.3. And 24hr cortisol just came back today-95.9.  Kaiser generally use their own labs (HMO is not fun when it comes to diagnosing).    i have a phone appointment tomorrow - fingers crossed I am getting somewhere.  

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I hope your phone appointment went well and- you got some answers!

Please keep us posted!

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Wow 8.4 on the first try. These are textbook adrenal numbers. I hope your doctors come to their senses.

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