Really need some help on trying to sleep, cortisol is highest at 12am

[Everydaystruggle]

I’m a patient of Defy and Dr. Saya. Little over 2 months ago we did a saliva test to check my cortisol levels and was told it was quite a complex case, and so much so that he wanted to make sure that intact i labeled my containers right, which I assured him I did. And that my cortisol at its highest was also at 12am. I was put on 500mg of rhodiola in the morning to help give me a boat because my cortisol was low at 8am. And the at dinner time taking 30mg of pregnenolone and 200mg of Phosphatidylserine. Unfortunately I believe this whole cortisol issue is extremely effecting my sleep quality and my health. I have zero problems falling asleeping but every night around 12-1 I wake up. And am up off and on through the old night. And also in a very very light to sleep. To the point where it doesn’t even feel like I sleep. I’ve tired melatonin, time released melatonin, magnesium as well, Benadryl, zquil (which worked the best but far from great) just to try and get some sleep. I know if I could get some quality sleep I would feel so much better then I do now and be able to function. Every now and then when I’m able to for whatever reason, get a tiny bit better sleep at night, although not great, I feel so much better. I just don’t know what to do. My next blood work is in about a month but my appointment probably isn’t for another 2 months due to the cortisol test taking longer to get results and then depending on how far Dr. Saya is booked. I really don’t want to take any prescription medication like ambien or anything as I feel that’s not treating the underlying issue but I really need to sleep. And even though I’m absolutely exhausted, I still can’t sleep. And that’s part that really baffles me is for my whole life I’ve never had an issue sleeping, in fact I was the person that could sleep 12 hours a night with no problem, be up for 3 hours and go back to sleep another 8 if I wanted. I slept to much. And now I’m the 100 percent complete opposite. Any help is greatly appreciated.

 

[Vince Carter]

A lot of people have similar issue though you typically read about as 2 to maybe 4 am that we wake and then either have trouble getting back to sleep or can't get back to sleep. Its an interesting thing.

 

[Everydaystruggle]

A lot of people have similar issue though you typically read about as 2 to maybe 4 am that we wake and then either have trouble getting back to sleep or can't get back to sleep. Its an interesting thing.

But those people are probably at least getting quality sleep from the time they go to bed till that 2-4am. I get maybe 2-3 hours if I’m lucky where I w thallus feel like I slept. Other then that it just feel like rest of the nest I’m just resting and not actually sleeping. It’s an extremely light sleep. And then I’m wake up a good 8 times a night.

 

[Deleted member 16042]

Re: apppointments w Dr saya, you can schedule now based on anticipated time when next results will be in. You have to pay up front, but you get put on the schedule when you need it. If you wait, he gets booked up far ahead.

When I have a consultation with Dr Saya, I put my next lab date on my calendar and as soon as I hang up with him, call scheduling to book the next consultation (usually 8 weeks ahead.)

 

[Vince Carter]

But those people are probably at least getting quality sleep from the time they go to bed till that 2-4am. I get maybe 2-3 hours if I'm lucky where I w thallus feel like I slept. Other then that it just feel like rest of the nest I'm just resting and not actually sleeping. It's an extremely light sleep. And then I'm wake up a good 8 times a night.

I presume but I'll ask have you thought about doing the 4 tube saliva through the night I see you ran one at midnite which I think is standard for those tests but maybe thinking the first one at 9pm, then midnite, then 3am, and so forth?

 

[a_crossfitter]

I am just like you.

I have been on trt since 2014. Have changed things a lot. Am taking thyroid hormones. NOTHING helps.

-Drained+Fatigued all the time.
-Wake up feeling worse than when I went to bed.
-I don't have issues falling asleep either; however, I don't get quality sleep.

What was that drug Michael Jackson overdosed on? Maybe I need some of that!

 

[ratbag]

Good article on the 7 stages of adrenal fatigue/insufficiency. I had the same thing when I was younger. When it was time to sleep I was wide awake and by the time it reached 6:00am I was ready to fall asleep (just about the time my alarm would go off) the rest of the day I was exhausted and could fall asleep in a flash. It wasn't until late in the evening that my cortisol would go too high. So I was producing all the right amounts of cortisol but they were at the wrong times. So they said my cortisol rhythm was off. I guess that was stage 3 or 4.

https://stopthethyroidmadness.com/seven-stages/

 

[HarryCat]

I am just like you.

I have been on trt since 2014. Have changed things a lot. Am taking thyroid hormones. NOTHING helps.

-Drained+Fatigued all the time.
-Wake up feeling worse than when I went to bed.
-I don't have issues falling asleep either; however, I don't get quality sleep.

What was that drug Michael Jackson overdosed on? Maybe I need some of that!

I am in a very similar situation except I have no ability to fall asleep spontaneously, I have to use Ambien, and I usually describe the way I feel when I get up in the morning like I've been hit by a bus.

I actually went on TRT to try to help with my sleep problems, it hasn't helped. It appears that my low T was due to my sleep problems and not the other way around.

I also have RLS which is caused, at least in part, by low dopamine. The one time in the past couple of years when I did actually get a good night's sleep was when I started wellbutrin, which is a norepinephrine-dopamine reuptake inhibitor. The benefit only lasted a couple of nights though.

Funny that I think about Michael Jackson's insomnia problems too, he overdosed on propofol.

 

[Everydaystruggle]

I'm not sure really what's going on with my body. I am happy that my t levels have raised, my igf1 levels are good now, so is my dhea. It's just this cortisol issue that I feel is the main culprit to my struggles at this point. I don't know what stage my adrenal issue would be. Here is a picture. Midnight being the highest. And yes I have thought about seeing what my cortisol levels are during the night. At this point I'm putting you trust into Dr. Saya.

 

[Everydaystruggle]

Also I can’t remeber what Dr. Saya said about my acth. tumblr image hosting

 

[Vince Carter]

How are you doing with Vitamin D? Supplementing or getting some sun as weather and temps allow? I'm thinking about your circadian rhythm.

 

[Everydaystruggle]

I do remeber Dr. Saya mention something about the circadian rhythm. Also I was taking 5000iu of vit d3 a day but after around 3 months it made me have a sick stomach. So I backed down to 3000iu daily and so far have been fine.

 

[a_crossfitter]

I believe that my endocrine system is messed up due to not getting restful sleep.

Going to ask my Dr for propofol!

 

[ratbag]

This doesn't make any sense. Has Dr. Saya looked at this? Despite that it says normal it clearly is not. Your results show you are in bad shape. According to STTM..
this is what they say. https://stopthethyroidmadness.com/lab-values/

24-HOUR CORTISOL SALIVA: This is an at-home test to evaluate your circadian and cellular cortisol levels at key times during a 24 hour period. It's more accurate than blood cortisol, we saw repeatedly, since the latter measures both bound and unbound cortisol, not cellular levels like saliva, and thus blood can give a false idea of what is really going on.
We noted repeatedly that those will healthy adrenal function will have the following saliva results:
8 am: at the literal tip top of the range
11 am-noon: in the upper quarter
4-5 pm: mid-range
11 pm to midnight: at the very bottom (literally)



#1.) Midnight is way above range and yet it says normal?
#2.) 8:00am cortisol should be your highest cortisol of the day and should be at the top of range... it's not even close.
#3.) Noon is very close to bottom of range (but just in range) should be upper quarter
#4.) 4pm is bottom of range (but just in range) should be mid-range

You need to talk to Dr. Saya about this. It's no surprise you cannot sleep.

 

[Everydaystruggle]

It’s saya normal but he knows that it is NOT normal and is very well aware. In fact he thought maybe I labeled the bottles wrong because of how my levels are all over the place. I wish I had labeled them wrong but I’m 100 percent that I labeled them right.

 

[Dr Justin Saya MD]

It's a goof up from LabCorp. I caught it when I first reviewed the results. It's "specimen 1" so they automatically (and erroneously) reported "normal" based on the AM reference range...yet with attention to detail one can see that "specimen 1" was actually the midnight specimen.

Everydaystruggle- as we discussed, your circadian/diurnal rhythm is off kilter. This is a multipronged problem of which we need to continue to peck away at the underlying problems and, if next labs justify, progress to more aggressive measures. I'll be interested to see your next lab results and look forward to our chat!

 

[cleverusername]

It's a goof up from LabCorp. I caught it when I first reviewed the results. It's "specimen 1" so they automatically (and erroneously) reported "normal" based on the AM reference range...yet with attention to detail one can see that "specimen 1" was actually the midnight specimen.

Everydaystruggle- as we discussed, your circadian/diurnal rhythm is off kilter. This is a multipronged problem of which we need to continue to peck away at the underlying problems and, if next labs justify, progress to more aggressive measures. I'll be interested to see your next lab results and look forward to our chat!

Curious if mine has this same goof up. I took my first swab upon waking up at 2:45am and all throughout the day, that 2:45am swab seems to be my highest point. Here I am currently sitting at 2:10am posting, another long and tiresome day ahead. Ive begun taking pregnenolone 2 times during the day. It has helped me to remain calm, and also seemed to provide just enough energy to keep me from falling asleep at red lights.

 

[LTChris]

I have been doing mouth taping lately. with some surprising results. I sleep better (wife likes the lack of snoring). I don't think that is the answer to your issues but as things more forward for you it might be a good addition to your night time regime.

 

[ratbag]

cleverusername, your saliva results are all very low. Yes they are in range but don't be deceived by them saying it's Normal. It's is far from optimal and surely you are suffering because of this. You'll need to work on this.

 

[Dr Justin Saya MD]

Curious if mine has this same goof up. I took my first swab upon waking up at 2:45am and all throughout the day, that 2:45am swab seems to be my highest point. Here I am currently sitting at 2:10am posting, another long and tiresome day ahead. Ive begun taking pregnenolone 2 times during the day. It has helped me to remain calm, and also seemed to provide just enough energy to keep me from falling asleep at red lights.


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Well here's the defining point of that discussion: the "first sample" is considered the first sample UPON AWAKENING. Thus, if the 2:45AM swab was upon awakening from your night's sleep then it should indeed be compared to the "first sample" reference range. However, it is also preferred that the swabs be collected on a day when you are as close to your normal circadian rhythm as possible (same time to bed and same time awakening).

Everydaystruggle, if I'm not mistaken, was a different scenario as I believe the midnight sample was the LAST sample of his day (e.g. before he went to bed). However, because this was technically the AM hours LabCorp automatically referenced it to the "first sample" range.