1. < Autoimmune Diseases

Low cortisol yet only saliva test done: What to do next?

Posted by Garygirl @taftst1, Oct 16, 2023

Starting last year, low cortisol 0.69. Now after 6 tests, 11.00. Endo is doing nothing just telemed. Pcp is doing the same. Shaky, weak high and low Bp. Cardio has me on Dilitizem 120ER. Saw interventional doc, did saliva test. Peak at 3 pm and 10 pm. Could not handle the DHEA spray or adrenal pill. Taking ashwagandha and it went up. In pain from bad knee replacement 2 .5 years ago, not a revision candidate. Went through 6 cardio’s have tachycardia. First test was 200 bpm, 2 mins at a time 11 events in 8 days. That’s when the heart med came in. Still shaky, weak pounding heart. No help. New cardio and intervention med doc stated it’s from the pain. But even on pain meds, low dose of 7 mg per day not 20, still having floating feeling, shaky and weak. Getting another monitor next week from new cardio as the others stated it’s the pain meds!!!! Had this before the med! Lost here. Could be POTS. Anyone go this long and have cortisol levels like this and have Bp, tach? Frustrated. In Florida, Gods waiting room. Thank you.

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Garygirl | @taftst1 | Oct 18, 2023

What I saw on the list, gathered that but would not entertain a visit to those listed just by research. Some day one will find out either alive or dead. Been 5 years total. If it’s anxiety I sure would not be able to perform like I do. It’s a garbage can diagnose. B

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 18, 2023

@taftst1 and @marilynredder2367, allow me to clarify. Mayo Clinic has three primary locations in the US in Arizona, Florida and Minnesota, as well as 2 international locations in the UK and United Arab Emirates. Serving communities in southern Minnesota, western Wisconsin, and northern Iowa, is also our network of clinics, hospitals, and health care facilities called the Mayo Clinic Health System.

All of these locatioins, including the Jacksonville location, which was named #1 hospital in Florida by U.S. News & World Report 2023-2024, are "real" Mayo Clinics.

Learn more about our locations and rankings here: https://www.mayoclinic.org/locations

The Mayo Clinic Care Network are not primary Mayo Clinic facilities, however network members are hospitals that have the ability to tap into Mayo Clinic's expertise. The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See the member hospitals here:
– Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

@taftst1, let's turn back to you. Reading through this discussion, I understand that you are concerned with persistent low cortisol levels and that you would like to confirm or rule out Addison's disease, also called adrenal insufficiency, and get to the bottom of the symptoms you're experiencing. I'm tagging @dawn_giacabazi who sought answers for years and years related to adrenal issues. She ultimately found care in Florida and may be able to share more.

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2 replies
Garygirl | @taftst1 | Oct 18, 2023
In reply to @colleenyoung "@taftst1 and @marilynredder2367, allow me to clarify. Mayo Clinic has three primary locations in the US..." + (show)
@colleenyoung

@taftst1 and @marilynredder2367, allow me to clarify. Mayo Clinic has three primary locations in the US in Arizona, Florida and Minnesota, as well as 2 international locations in the UK and United Arab Emirates. Serving communities in southern Minnesota, western Wisconsin, and northern Iowa, is also our network of clinics, hospitals, and health care facilities called the Mayo Clinic Health System.

All of these locatioins, including the Jacksonville location, which was named #1 hospital in Florida by U.S. News & World Report 2023-2024, are "real" Mayo Clinics.

Learn more about our locations and rankings here: https://www.mayoclinic.org/locations

The Mayo Clinic Care Network are not primary Mayo Clinic facilities, however network members are hospitals that have the ability to tap into Mayo Clinic's expertise. The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See the member hospitals here:
– Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

@taftst1, let's turn back to you. Reading through this discussion, I understand that you are concerned with persistent low cortisol levels and that you would like to confirm or rule out Addison's disease, also called adrenal insufficiency, and get to the bottom of the symptoms you're experiencing. I'm tagging @dawn_giacabazi who sought answers for years and years related to adrenal issues. She ultimately found care in Florida and may be able to share more.

Jump to this post

I personally know individuals who have been to the Fl location, they ended up In Minnesota. That’s a possibility right now. I get tested each month and watching that cortisol. Main factor throwing things off is the replacement that was a botched job. Being careful than ever before. Know a patient who ended up at USF. She has secondary. But nothing is off the table.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 18, 2023
In reply to @taftst1 "I personally know individuals who have been to the Fl location, they ended up In Minnesota...." + (show)
@taftst1

I personally know individuals who have been to the Fl location, they ended up In Minnesota. That’s a possibility right now. I get tested each month and watching that cortisol. Main factor throwing things off is the replacement that was a botched job. Being careful than ever before. Know a patient who ended up at USF. She has secondary. But nothing is off the table.

Jump to this post

It is possible that patients may travel between locations. For example, Mayo Clinic in Florida's proton beam facility is not yet completed and patients may have to travel to Arizona or Minnesota for treatment. More often however, the patient does not need to travel to benefit from the team approach at Mayo Clinic. Clinicians and specialists can consult with peer experts between campuses for the benefit of the patients.

@taftst1, I'm glad to hear that nothing is off the table and that you are exploring your options. I hope that you will be able to find care close to home, but knowing that you're able to travel gives you additional options. I just found this in my searching for you. The Carling Adrenal Center https://www.adrenal.com/ is located in Florida. I know nothing about it, so I can't endorse it or make a knowledgeable recommendation. I just want you to know there are options to explore including Mayo Clinic.

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Garygirl | @taftst1 | Oct 18, 2023
In reply to @taftst1 "I personally know individuals who have been to the Fl location, they ended up In Minnesota...." + (show)
@taftst1

I personally know individuals who have been to the Fl location, they ended up In Minnesota. That’s a possibility right now. I get tested each month and watching that cortisol. Main factor throwing things off is the replacement that was a botched job. Being careful than ever before. Know a patient who ended up at USF. She has secondary. But nothing is off the table.

Jump to this post

Appreciate everything! Next Monday is my 3 rd heart monitor for Tachycardia. Here we go!

Then Friday epidural for sympathetic nerve going to knee.

Asked pcp to run. CBC w/wo diff and morning cortisol as last month, went down 2 pts and prior to that it was up. Done with my current endo. Will be calling for appt. If I can’t get in quick with Mayo then off to USF. Something has to give. I wonder if all the pain from the TKR is not connected to low cortisol. My first test last December was 0.069. Now 10 was 12.

It’s Florida, being a women, post menopausal. The stories I can tell you about health care. Hubby was diagnosed with Guillain Barre by my phone photos that went to Indiana University. They were intending to just put him in a nursing home! I am a fighter, they hated how I stepped in after 4 days and no diagnosis.

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Dawn, Alumni Mentor | @dawn_giacabazi | Oct 19, 2023
In reply to @colleenyoung "@taftst1 and @marilynredder2367, allow me to clarify. Mayo Clinic has three primary locations in the US..." + (show)
@colleenyoung

@taftst1 and @marilynredder2367, allow me to clarify. Mayo Clinic has three primary locations in the US in Arizona, Florida and Minnesota, as well as 2 international locations in the UK and United Arab Emirates. Serving communities in southern Minnesota, western Wisconsin, and northern Iowa, is also our network of clinics, hospitals, and health care facilities called the Mayo Clinic Health System.

All of these locatioins, including the Jacksonville location, which was named #1 hospital in Florida by U.S. News & World Report 2023-2024, are "real" Mayo Clinics.

Learn more about our locations and rankings here: https://www.mayoclinic.org/locations

The Mayo Clinic Care Network are not primary Mayo Clinic facilities, however network members are hospitals that have the ability to tap into Mayo Clinic's expertise. The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See the member hospitals here:
– Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

@taftst1, let's turn back to you. Reading through this discussion, I understand that you are concerned with persistent low cortisol levels and that you would like to confirm or rule out Addison's disease, also called adrenal insufficiency, and get to the bottom of the symptoms you're experiencing. I'm tagging @dawn_giacabazi who sought answers for years and years related to adrenal issues. She ultimately found care in Florida and may be able to share more.

Jump to this post

Thank you for the tag @colleenyoung
@taftst1 I'm going to cut straight to the chase. Dr Carling and his team are straight forward, simple. I had one consultation appointment after I spent over seven years searching for answers. He had me do cardiac rehab for 3 weeks and then I was scheduled for surgery. I was on the beach at Tampa Florida Recovering the next morning! None of my doctors over those seven years did anything wrong. It just is something that was under experienced and under studied. Dr. Carling had a personal invested interest in adrenal tumors, which is why he focused his career on adrenal health. Only one in the world that I'm aware of, that specializes his entire practice on adrenal health . He's a phenomenal educator and surgeon. He works closely with your physicians . You have the option of an online consultation or you can go there and have one in person. https://www.adrenal.com/adrenal-gland/common-problems
It is 100% absolutely unnecessary to endure all of the struggles He can direct on what proper testing. He will review all your medical records and tell you if he can help or not.
Praying for answers,
Dawn

REPLY
Garygirl | @taftst1 | Oct 19, 2023
In reply to @dawn_giacabazi "Thank you for the tag @colleenyoung @taftst1 I'm going to cut straight to the chase. Dr..." + (show)
@dawn_giacabazi

Thank you for the tag @colleenyoung
@taftst1 I'm going to cut straight to the chase. Dr Carling and his team are straight forward, simple. I had one consultation appointment after I spent over seven years searching for answers. He had me do cardiac rehab for 3 weeks and then I was scheduled for surgery. I was on the beach at Tampa Florida Recovering the next morning! None of my doctors over those seven years did anything wrong. It just is something that was under experienced and under studied. Dr. Carling had a personal invested interest in adrenal tumors, which is why he focused his career on adrenal health. Only one in the world that I'm aware of, that specializes his entire practice on adrenal health . He's a phenomenal educator and surgeon. He works closely with your physicians . You have the option of an online consultation or you can go there and have one in person. https://www.adrenal.com/adrenal-gland/common-problems
It is 100% absolutely unnecessary to endure all of the struggles He can direct on what proper testing. He will review all your medical records and tell you if he can help or not.
Praying for answers,
Dawn

Jump to this post

THANK YOU! Going to contact! So … med free too?

Appreciate your help!

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lisanewell68 | @lisanewell68 | Oct 19, 2023

Listen, I have had this "low cortisol" condition for 2 years. Myocardial Infarction x 2, tachy, hypertensive, panic upon waking, just a cascade of misery. I hope you find this. I began taking dried bovine adrenal gland, because nobody locally had any answers, besides daily steriods, and channel blockers. My symptoms stopped after starting it. I now, can feel it when I'm low on cortisol- so, I take an extra. If you get a supplement for adrenal support, make sure it contains dried bovine gland, or it won't help. I was sure I would die, so I took a leap of faith. Hope and pray this works for you-because it is hell.
I'm looking for a more permanent solution, and if you find one, please share.

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lisanewell68 | @lisanewell68 | Oct 19, 2023

when we found this low cortisol, it was a 0.6 - to keep my level up to about 11 or 13, I take 900 mg in AM and PM.

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lisanewell68 | @lisanewell68 | Oct 19, 2023

I applied to the Mayo clinic months ago, got a letter back saying because my cortisol level had improved, I was considered stable. My endocrinologist told me I was healed. Like I mentioned, I am looking for a more permanent fix- because if I miss that AM or PM dose, I get in an unstable mess for a few hours.

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