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doxyjune
@doxyjune

Posts: 41
Joined: Jan 23, 2018

Adrenal Saliva Cortisol High at Night and High in the Morning

Posted by @doxyjune, Fri, Mar 9 12:14pm

Hi everyone. I have been struggling with thyroid and adrenal issues for 20 years. I am a 60 year old female. I have fibromyalgia which manifests via chronic pain in calves which they are now saying fibromyalgia , hypertension, depression, thyroid and adrenal problems — now very bad insomnia My thyroid goes from regulated to not regulated as I am on Natural thyroid since I can't convert synthroid. When there is a bad batch of natural thyroid every 5 or 6 years my thyroid is then out of whack and takes quite some time to get it back on track. Now my adrenals which were so low that I was flat lined on the saliva chart for many years and was even taking hydrocortisone for about 3 years – well somehow my adrenals have rejuvenated themselves – now I am under a different kind of stress but didn't think things were so out of sorts till I got my recent results of the saliva test. My evening level is 1.2 (range .4 to 1.0) The morning level is much worse 15.2 (range 3.7 to 9.5). The 2 daytime levels are within normal range.

Due to being on natural thyroid, 99% of endo's won't work with me so I am left with self medicating myself. But I have not seen this kind of variation ever. I am very lost and need help – Any ideas or suggestions would be greatly appreciated. Thank you.

REPLY

Hello, @doxyjune — sounds like it's been a long time of struggling with the thyroid and andrenal issues.

Some members who come to mind as potentially having some insights for you on your adrenal saliva cortisol being high at night and high in the morning include @vdouglas, @retiredteacher, @sierrawoods, @@jigglejaws94. @oldkarl and @annedodrill44.

Are there any other types of medical professionals — perhaps who work with alternative medicine — who might oversee your levels?

I wonder if you have a dysautonomia going on.

@doxyjune I have had several tests on my adrenals recently because I have had tumors on both for quite a few years. Mine are thought to be non-functioning, but the results of the tests we have undertaken have led to non-sensical results. My Endo wants to perform another test to verify that the previous ones were simply unreliable because there is nothing wrong with my hormone production from my adrenals. Has the recent results of your salivary tests been verified with a repeat or another test that verifies an adrenal issue? I would like to know more, because this is one part of my personal health that I don't think has been probed as thoroughly as needed. Thanks, Gary

Hi Gary, I just got the results on Friday – My endo, who is not reliable has not returned any phone calls and I am trying to find any doctor who will treat me – Long Island has sub standard doctors and the health care here stinks. I have had saliva tests before and they have been very reliable. When I was heading towards adrenal insufficiency the saliva levels were very low – toward a flat line. That was many years ago. Now they are showing high at nite and very high in the A.M. – I didn't think they could rebound like this and now they are too high. You are lucky that you have an endo that will treat you.

@gman007

@doxyjune I have had several tests on my adrenals recently because I have had tumors on both for quite a few years. Mine are thought to be non-functioning, but the results of the tests we have undertaken have led to non-sensical results. My Endo wants to perform another test to verify that the previous ones were simply unreliable because there is nothing wrong with my hormone production from my adrenals. Has the recent results of your salivary tests been verified with a repeat or another test that verifies an adrenal issue? I would like to know more, because this is one part of my personal health that I don't think has been probed as thoroughly as needed. Thanks, Gary

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Sounds like you need venous sampling on both of your adrenal. This test will tell the doctors (and you!) what your true hormone levels are. It's really a vital, albeit expensive test.

@doxyjune , I am really fortunate that he treats me for so many things. I have had a partial thyroidectomy, a distal pancreatectomy (leads to type II D), adrenal issues that have to be monitored, empty cella syndrome. For insurance purposes, and his wallet I suspect, I usually have a diabetes appointment with him and an "everything else" appointment. Maybe it is bred into their training because mine does not show any urgency about anything.

@gman007

@doxyjune , I am really fortunate that he treats me for so many things. I have had a partial thyroidectomy, a distal pancreatectomy (leads to type II D), adrenal issues that have to be monitored, empty cella syndrome. For insurance purposes, and his wallet I suspect, I usually have a diabetes appointment with him and an "everything else" appointment. Maybe it is bred into their training because mine does not show any urgency about anything.

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Hi Gary, the endo got back to me and told me to repeat the midnight saliva sample. She said that is how we double check high cortisol in saliva tests. Thank you for your feedback. Also to @valb68, I have no idea as to that type of procedure and if this dr. would even order it if it is an expensive test as my health insurance is medicaid.

@lisalucier

Hello, @doxyjune — sounds like it's been a long time of struggling with the thyroid and andrenal issues.

Some members who come to mind as potentially having some insights for you on your adrenal saliva cortisol being high at night and high in the morning include @vdouglas, @retiredteacher, @sierrawoods, @@jigglejaws94. @oldkarl and @annedodrill44.

Are there any other types of medical professionals — perhaps who work with alternative medicine — who might oversee your levels?

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Hi Lisa, Yes 20 years is a long time. I am looking for an alternative or functional doctor – I live on Long Island NY and I have not been able to connect with any. Is there any chance that you might know of one to refer me to. Thank you for any help you might be able to offer me.

@lisalucier

Hello, @doxyjune — sounds like it's been a long time of struggling with the thyroid and andrenal issues.

Some members who come to mind as potentially having some insights for you on your adrenal saliva cortisol being high at night and high in the morning include @vdouglas, @retiredteacher, @sierrawoods, @@jigglejaws94. @oldkarl and @annedodrill44.

Are there any other types of medical professionals — perhaps who work with alternative medicine — who might oversee your levels?

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@doxyjune finding a doctor is beginning to seem like a common plight. Today I tried to get an appointment with a urogynecologist and the soonest opening she has is in September!
JK

@lisalucier

Hello, @doxyjune — sounds like it's been a long time of struggling with the thyroid and andrenal issues.

Some members who come to mind as potentially having some insights for you on your adrenal saliva cortisol being high at night and high in the morning include @vdouglas, @retiredteacher, @sierrawoods, @@jigglejaws94. @oldkarl and @annedodrill44.

Are there any other types of medical professionals — perhaps who work with alternative medicine — who might oversee your levels?

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Hi, @doxyjune — as a moderator on Mayo Clinic Connect, I'm unable to refer or recommend a particular physician or practice. However, I'm tagging @judyem, @128128terry11t, @mrsdeecee, @ehliny, @23susan and @glutenfree555, as they may be familiar with the area and have more information and insight.

@doxyjune, I am glad they are repeating the test before jumping headlong into solving a problem that may not be there. Besides your thyroid, do you have any other symptoms going on? I would guess that NY has much higher office space costs and I don't think medicare and medicaid reimburses based on location, so I could see why there may be a shortage of docs in your area. You also live in an area where the distinction between incomes is as large as anywhere in the US and there may be a lot of docs there who have gone to the "concierge" medical route. People often talk about how medicine is better in dutch countries and one of the primary reasons is that their docs do not go to med school to become millionaires as they earn an above avg. salary, but nothing exorbitant. OK, off the soapbox.

@gman007

@doxyjune, I am glad they are repeating the test before jumping headlong into solving a problem that may not be there. Besides your thyroid, do you have any other symptoms going on? I would guess that NY has much higher office space costs and I don't think medicare and medicaid reimburses based on location, so I could see why there may be a shortage of docs in your area. You also live in an area where the distinction between incomes is as large as anywhere in the US and there may be a lot of docs there who have gone to the "concierge" medical route. People often talk about how medicine is better in dutch countries and one of the primary reasons is that their docs do not go to med school to become millionaires as they earn an above avg. salary, but nothing exorbitant. OK, off the soapbox.

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@gman007 Long Island may be different than being in NYC. I have only been there one time but it was a pretty normal type of area. I guess it's much different if you get out to the far reaches where all the celebrities have homes.
I agree totally with the way doctors are these days. I don't think typical PCPs are extremely wealthy but surgeons are. I really resent the current system too where the doctors wash their hands of you if you go into the hospital, you only see hospitalists. If you are sick in the hospital, who do you want to see? The doctor who knows you or some hospitalist who is a total stranger. The PCPs basically have 9 – 5 jobs now and I think as such they don't have the caring or connection to their patients that most patients expect.
I know that some PCPs will call their patients when they are in the hospital just to check in on them but mine did not and I was hospitalized locally three times while waiting for my transplant and two times in Boston while waiting, and then of course when I had my transplant. I did not hear anything from my PCP. I assumed that he must not know so after I got home from the transplant I called him to let him know I had it and he told me he knew the day I was transplanted!
I believe that concierge doctors are not employed by hospitals, they are your doctor even if you go into the hospital. Unfortunately there is only one up here and he has stopped taking new patients. Of course maybe the upfront charge to be one of his patients would be prohibitive anyway.
JK

@gman007

@doxyjune, I am glad they are repeating the test before jumping headlong into solving a problem that may not be there. Besides your thyroid, do you have any other symptoms going on? I would guess that NY has much higher office space costs and I don't think medicare and medicaid reimburses based on location, so I could see why there may be a shortage of docs in your area. You also live in an area where the distinction between incomes is as large as anywhere in the US and there may be a lot of docs there who have gone to the "concierge" medical route. People often talk about how medicine is better in dutch countries and one of the primary reasons is that their docs do not go to med school to become millionaires as they earn an above avg. salary, but nothing exorbitant. OK, off the soapbox.

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I am sure it would be more in NYC, but my PCP who decided to become a concierge practice wanted $1500 up front. Since I am doubly insured, my out of pocket for docs and hospitals is far less than that.

@gman007

@doxyjune , I am really fortunate that he treats me for so many things. I have had a partial thyroidectomy, a distal pancreatectomy (leads to type II D), adrenal issues that have to be monitored, empty cella syndrome. For insurance purposes, and his wallet I suspect, I usually have a diabetes appointment with him and an "everything else" appointment. Maybe it is bred into their training because mine does not show any urgency about anything.

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Hi, @doxyjune — wondering what happened with your repeat of the midnight saliva sample? How were your levels?

Hi, @doxyjune — how are your adrenals doing lately? Thinking of you.

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