High Cortisol Levels & Overnight Suppression Test

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High Cortisol Levels & Overnight Suppression Test


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Old 04-24-2018, 11:11   #1
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Join Date: Mar 2014
Location: Long Island, New York
Posts: 25

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Type 1
Diagnosed in 2016

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Default High Cortisol Levels & Overnight Suppression Test

Hello, everyone! My apologies if this post is in the wrong forum. Please move if necessary!

Ever since I changed my lifestyle based on advice from users on this forum and have completely gotten my diabetes under full control, it has given my Endocrinologist something else to focus on.

JUNE 2017

Around this time lab results showed very high cortisol levels.

Code:
CORTISOL, FREE, URINE: 75.5 [Range: 4.0-50.0]
CREATININE, URINE: 3.16 [0.63-2.50]
Nurse practitioner was concerned and she shared my results with the Endocrinologist. He suggested an Overnight Suppression Test.

SEPTEMBER 2017

I took .5MG of Dexamethasone at midnight one night, flushed upon waking up, collected for 24-hours. That's it, one pill.

This steroid caused the WORST insulin resistance ever. I got my diabetes under control around March of 2017, first under control A1C was 6.1, and getting better.

I was only taking 15-units basal daily and less than 10-units bolus daily.

Well, from this one single dose of Dexamethasone, I needed about 60-units bolus daily. Keep in mind, I consume less than ~100G of carbohydrates daily! This lasted for nearly a week! I need very little insulin and it's likely due to my C-PEPTIDE.

The results were as follows:

Code:
CORTISOL, TOTAL: 3.8 [AM Range: 4.0 - 22.0, PM Range: 3.0 - 17.0]
I believe I was AM as I remember having to go to the lab at around 6AM after my last morning collection.

I guess this was considered the Low-Dose Overnight Suppression Test.

Based on the results, my Endocrinologist wanted me to go for the High-Dose Multi-Day Suppression Test with another Low-Dose. He told me he suspects that I have a tumor, which is causing the high cortisol. He also mentioned Cushing's Disease.

Seeing as my diabetes was only under control for 6-months, I was fixated on lowering my A1C even more and really did not want to take more Dexamethasone.

I expressed this to my nurse practitioner and she told me the test could wait, continue to focus on improving my A1C.

So, life went on, A1C improved, met with my nurse practitioner a few times, and she never pushed the High-Dose Multi-Day Suppression Test. She eventually left on maternity leave. Plans were to see her when she returns in May of 2017. I figured all was good.

About a month or two ago, to my surprise, I received a letter from my Endocrinologist's office, which indicated they were firing me as a patient. By law they have to give 30-days notice and I was able to make an appointment to meet with the fill-in nurse practitioner. She called the Endocrinologist into the room, she did not know why I was fired as a patient.

They were firing me because I never followed up on the High-Dose Multi-Day Suppression Test.

I expressed my concerns and told him that the .5MG single dose of Dexamethasone was the worst and really didn't want to deal with the high-dose. Asked him to just send me for an MRI if he thinks I have a tumor. He said insurance would not approve an MRI without these tests prior. He also said that the Dexamethasone isn't as bad as I described it and to focus on maintaining a blood glucose of ~200 throughout the week. I told him that's nearly impossible because I have no idea how much insulin to take for blood glucose that high and he said to "do your best".

So I spent the week taking Dexamethasone and collected for three days. The schedule was as follows:

Code:
Monday: 24-Hour Collection, no Dexamethasone
Tuesday: .5MG Dexamethasone Every 6-Hours [12AM, 6AM, 12PM, 6PM]
Wednesday: .5MG Dexamethasone Every 6-Hours [12AM, 6AM, 12PM, 6PM]
Wednesday: 24-Hour Collection
Thursday: 2MG Dexamethasone Every 6-Hours [12AM, 6AM, 12PM, 6PM]
Friday: 2MG Dexamethasone Every 6-Hours [12AM, 6AM, 12PM, 6PM]
Friday: 24-Hour Collection
I dropped three collections off to Quest on Saturday morning and they drew blood as well. The technician was confused as to why the doctor didn't have me go draw blood three times so she noted that the blood was post-collection on the third day.

This was the WORST WEEK EVER! Constant blood glucose readings of 400+, 100-units bolus daily with less than 50G carbohydrates daily! Not to mention if I over-shot insulin I'd go low. My worst low ever was a 22 during this week! I could hardly make it downstairs to get something to eat. I'm often going as low as 50 and I can deal with that, but 22 is another ballgame. The worst feeling ever.

I received two results back from Quest so far, which I guess is for two collections; unless they combine Wednesday and Friday, I really have no idea.

Results are as follows:

LIKELY MONDAY'S COLLECTION [NO DEXAMETHASONE]

Code:
CORTISOL, FREE, URINE: 48.0 [Range: 4.0-50.0]
CREATININE, URINE: 2.44 [0.63-2.50]
LIKELY WEDNESDAY or FRIDAY'S COLLECTION or BOTH DAYS COMBINED [DEXAMETHASONE]

Code:
CORTISOL, FREE, URINE: 3.0 [Range: 4.0-50.0]
CREATININE, URINE: 2.30 [0.63-2.50]
My next appointment is on the 15th of May with my current Endocrinologist.

Anyhow, I have phone consultations with Franziska Spritzler, a CDE based out of California, and have been doing so for a little over a year. When I came to this forum for advice, those that helped suggested LCHF, and I wanted a second opinion as my Endocrinologist didn't agree with that, which is how I found Franziska Spritzler via Google. She is AMAZING!

Long-story-short, she thinks it was wrong of my Endocrinologist to put me through this testing if he suspects I have a tumor and Cushing's Disease. She feels that insurance would have covered an MRI as having blood glucose of 400+, the risks are too high for a type-1 diabetic. The whole ordeal didn't make much sense to her.

In her defense, she is not a Endocrinologist or a doctor, doesn't give me medical advice, so really can't comment on the High-Dose Multi-Day Suppression Test. She just doesn't think the risks associated with the test make sense.

She's been suggesting I find a new Endocrinologist since my first consultation with her, which I finally did. While I am going to follow-up with my current Endocrinologist on the 15th of May to discuss the current lab results, I have an appointment with a new Endocrinologist on the 4th of June.

I never bothered to check HealthGrades before, but, my current Endocrinologist is rated 2-star of 100+ ratings, and the new Endocrinologist is a 5-star based on 100+ ratings. That could be meaningless, reviews can be spoofed, but, I just don't see a Endocrinologist doing that, but who knows.

I would love some opinions on my recent results, the High-Dose Multi-Day Suppression Test, and cortisol in general.

Thank you all so much for reading. Sorry for the long post. Figured more information was better than not enough!

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