How do you diagnose Cushing's syndrom and how do you treat it (long post)?

In early December, I had a 24 h saliva test which revealed high cortisol levels throughout the day:

7.30 am 11.12 (ref 2.68-9.30)

noon 3.50 (0.75-2.93)

5 pm 4.83 (0.36-1.88)

midnight 1.21 (<0.94)

I emailed these results to the doctor who has been responsible for my thyroid treatment in the past eight years, but she saw no cause for alarm and did not think any treatment would be warranted.

However, I have several symptoms of high cortisol such as weight grain (+20 kg in a few months), abdominal fat, high blood pressure difficult to get under control even on meds (I've been on perindopril 10 mg daily for the past five months), newly diagnosed diabetes 2, thyroid meds no longer working. After NDT stopped working (strange hyper symptoms with lowish free Ts; FT4 0.7 (0.7-1.5), FT3 2.7 (1.7-3.7), I switched to levo only, but felt equally bad so have not taken any thyroid meds for the past six days. Of course, I still have T4 left in my system from those meds but, once that's gone, I doubt I will continue to feel fine. I was diagnosed with Hashimoto's 20 years ago so doubt I will be able to continue without meds indefinitely. I suspect my high cortisol levels are to blame. I have read that high cortisol decreases T4 to T3 conversion, while increasing T4 to rT3 conversion but, first of all, new research suggests rT3 does not block the action of FT3 (as was previously thought). Also, if on NDT, so getting some direct T3, would this be as problematic compared to someone on T4 only...?

My body seems to be rejecting thyroid hormone lately.

All my current symptoms started after being treated with high doses of steroids for an autoimmune condition in late 2018. I was on steroids for six weeks, swelled up like a balloon, started putting on weight and noticed increased cravings, but expected symptoms to subside once the treatment had been discontinued. However, that did not happen, and my doctors were clueless, saying that usually, the side effects disappear when you go off the drugs. Unfortunately, it took me a whole year to order the 24 h saliva test and, during that time, I saw all the symptoms previously kept under control with NDT return with a vengeance. It's almost like thyroid hormone is no longer working for me since weaning off the steroids...so I suspect there is a connection, I just have to figure out which one...!

I had previously managed to lose almost 30 kg using berberine, but suddenly I was unable to control my blood sugar and insulin levels without drugs. I have been on Victoza for the past few months, but the side effects are pretty nasty and don't seem to be subsiding. The most bothersome one is nausea.

I have come to suspect that my high cortisol levels are responsible for all the symptoms that have appeared in the past year, and also explain why I no longer feel well on NDT (or T4).

Some alternative/holistic practitioners in the US advocate the use of T3 only for people in my situation, but they do so on the assumption that rT3 dominance is responsible for their symptoms, and that high cortisol levels are responsible for that. If rT3 is not as problematic as once believed, taking T3 only would make no sense.

Also, I have been rereading Paul Robinson's book "Recovering with T3", but his method focuses on treating adrenal fatigue. My problem is the opposite, so I suppose taking T3 at 4 pm would make matters worse for me...? Apart from that, his theories make a lot of sense.

One thing I have been wondering is the following: high cortisol levels are said to be stage 1 of adrenal fatigue. Meaning the adrenal glands won't be able to continue overproducing cortisol indefinitely, but will one day end up exhausted. That condition is caused by stress (emotional or brought on by disease such as chronic inflammation). However, that must be very different from overactive adrenal glands where a pituitary or adrenal cortex tumor is causing them to overproduce cortisol...? Which brings me back to my first question: how do you know if you have Cushing's??? Or, rather, can Cushing's be transient, in case of stress rather than cancer...?

I have been on PS 100 mg three times daily along with 500 mg of ashwagandha daily since late December, but so far don't notice any difference. If anything, my inability to handle any kind of thyroid hormone seems to have worsened in the past few weeks, to the point of making me go off them altogether. For the time being, I feel better off them, but doubt that will last.

One problem is that I am seeing a so called Hertoghe doctor who is basically a GP specialising in anti-aging medicine. Which is why I have been wondering lately if it would be wise to see an endocrinologist.

However, the very idea of seeing a conventional endocrinologist who would no doubt freak out at the sight of my suppressed TSH makes me hesitate...even if I can never go back on NDT, for whatever reason, my TSH may very well never normalise (it's been suppressed for well over 15 years), but how many endos are OK with that...?!

If anyone here has any experience when it comes to treating high cortisol when hypothyroid, especially if on any form of unconventional treatment (NDT/T3), I'd love to hear about it.

Is it unrealistic to expect adaptogens to work wonders in a little as a month?

The most common advice is to lower stress, but not being able to get your cortisol levels under control is a big stressor in itself, making that almost impossible at the moment...also, the thought of having to see more doctors makes me heart race and my blood pressure go up. I have seen enough doctors to last me a lifetime, and most have not been of any use; if anything, they've made me worse. So, I would only see more doctors if absolutely necessary.

Or, to put it differently: when is there a reason for concern?

[greygoose]

midnight 1.21 (<94)

Should that be (<0.94)?

[Hidden in reply to greygoose]

Yes, below 0.94! Sorry, will correct it in OP!

[greygoose in reply to Hidden]

You had me worried there! lol

[Hidden in reply to greygoose]

[humanbean]

Your results are not wildly different to those I've had in the past. I don't think they would be sufficiently high to suggest Cushing's Disease or Cushing's Syndrome.

Hidden might be able to help.

The following link isn't intended to be taken seriously it is more like a cartoon than anything else. But it will give you a very rough idea of what shape a cortisol graph is in someone with healthy levels of cortisol and in someone with Cushing's.

armandoh.org/wp-content/upl...

Your levels of cortisol would still show a fairly healthy shape - but the graph would just be too high.

I take Holy Basil to reduce my cortisol, although I am now taking only one capsule a day at bedtime. Previously I took a lot more. Specifically I take this product :

swanson.co.uk/p/swanson-ful...

Other things I've taken to try and reduce my cortisol are :

ashwaghanda - made me nauseous

Seriphos - I've taken this for two separate stints of about two months each several years ago. I was very, very unwell when I took it, so it probably wasn't a fair test. It made me feel even worse than usual, but it did give me relief from insomnia for a short time.

Rhodiola Rosea - I took this for a couple of years and I loved it. It seemed to give me a tiny boost of energy, which was in very short supply for me at the time. But then, out of the blue, it suddenly made me feel very jittery and anxious. I had to give it up. I wish I could still take it.

The Holy Basil is the one that has helped for the longest with the fewest problems.

[Hidden in reply to humanbean]

Thanks a lot, Humanbean, it's great to know that holy basil in particular works so well for you! I have been reading about it, but did not want to try anything before I got my saliva results back as symptoms of high and low cortisol can be very similar.

I read that rhodiola rosea can have both a calming and an anti-depressant effect which could explain why you reacted differently to it after a while.

Swanson is a great brand so now I know where to look!

I would really hate having to see more doctors and taking more drugs if not absolutely necessary. I´m especially wary of endocrinologists who always tend to interfere with my unconventional thyroid treatment and tell me I risk all sorts of horrible side effects if I don't take levo only and have a normal TSH...I've been through this discussion so many times I cannot stand the idea of having to do it again...!

[humanbean in reply to Hidden]

I've never seen an endocrinologist. I have no plans to ever agree to see one. I'm convinced, based on info from this forum, that one of their compulsory university courses before graduation is entitled "empathy removal".

[Hidden in reply to humanbean]

I agree 100%! Few endos seem to know anything about the thyroid, and they could not care less about how patients feel. I don't know who coined the expression "Tyranny of the TSH", but that is basically what it's about..so the only thyroid patients likely to recover under an endo's care are those lucky enough to convert enough levo to T3 while maintaining an in-range TSH...I never fell into that category so I always end up arguing with endos and boycotting them.