low cortisol

sunshine44

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so a few years ago I had high cortisol...

I have been having horrific symptoms suggesting low cortisol after my August crash. Cardiologist thought it was addisons but was not.

When in hospital they only tested my pm cortisol which was fine but never am.

I don't want another thing to worry about, I am unable to comfortably leave house for now (bedridden)….

has anyone been here and moved their levels up without steroids?

I hate google sometimes.

Would love to hear from someone whom has been here...maybe all bedridden people are low on cortisol?
 

kangaSue

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One odd bod thing that can cause low morning cortisol level (as in, reduced, but still in "normal zone"), as well as causing chronic fatigue symptoms is an occluded left renal vein, Nutcracker Syndrome. This can cause increased venous pressures into the left adrenal to cause some adrenal insufficiency.
 
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so a few years ago I had high cortisol...
You might enjoy reading this about Cortene.
https://www.healthrising.org/blog/2018/02/17/cortene-chronic-fatigue-syndrome-hypothesis/
As noted in Part 1, studies indicate that chronic stress causes a progression from high to low cortisol and can result in the development of cortisol sensitivity – a situation in which the body becomes more responsive to cortisol. (When cortisol sensitivity occurs low cortisol can have the same or greater effects than high cortisol does in healthy individuals.) This increased cortisol sensitivity cannot be measured by cortisol/synacthen tests (which measure level not effect) but it does results from epigenetic changes that can be shown.
From my understanding it is common for ME patients to have normal evening cortisol but low-normal morning cortisol due to HPA axis dysfunction (thyroid and iodine inefficiencies can be causes too). Your doctor may be able to order a home kit where you provide 4 saliva samples throughout the day to test and then mail to the lab.
 

gabriella17

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I just got referred by my PCP to an endocrinologist because my morning cortisol was below the lowest end of the normal range. I've been trying to educate myself about this and it's just stressing me out even more (how to raise it naturally). A year and a half ago, it was at the low end of the normal range. I can't make heads or tails of it all yet... some doctors say do supplements, others say diet, and there's even controversy over what to eat and when. I've been trying to hard to overcome all of this myself that I'm just plain sick of it, quite honestly. I have been mostly housebound. Today, "couch"-ridden. Being bed-ridden/couch-ridden most of the day stresses me the hell out in and of itself. I don't know how to deal.

I do wonder about that too, whether all the bed-ridden folks here are low cortisol. After researching it, it's pretty evident I have adrenal fatigue issues, if not downright Addison's (I guess I'll find out). I have every single symptom, down to the dark skin patches (which I've tried to get an answer on for years), the pupil test, the restless mind, the sudden second wind at dusk (like clockwork), the wired-but-tired, hair loss, zero libido, heat and sunlight avoidance, etc. etc. A lot of the symptoms sure do overlap. I don't know what's what anymore.

My naturopathic physician put me on hydrocortisone in Oct. 2017. I stopped after a couple of months because I gained 25 pounds! Then it took me almost a year to lose the weight. I started taking it again over the last month or so because I felt such a downturn and felt like I needed it to function. And according to the blood work, I guess I was right. Now I'm right back to where I started, but worse.

I'm right there with you as far as trying to raise my levels on my own. I do not want to be on cortisone, and I'm going to talk to this new endocrinologist about weaning me off.
 

sunshine44

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You might enjoy reading this about Cortene.
https://www.healthrising.org/blog/2018/02/17/cortene-chronic-fatigue-syndrome-hypothesis/


From my understanding it is common for ME patients to have normal evening cortisol but low-normal morning cortisol due to HPA axis dysfunction (thyroid and iodine inefficiencies can be causes too). Your doctor may be able to order a home kit where you provide 4 saliva samples throughout the day to test and then mail to the lab.
makes a lot of sense.
 

Starlight

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I have recently had blood tests which show low cortisol. The endocrinologist has said that she thought that a steroid inhaler which I use for asthma may well be the cause . I'm waiting for a synactin test .
 

Crux

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I have every single symptom, down to the dark skin patches (which I've tried to get an answer on for years), the pupil test, the restless mind, the sudden second wind at dusk (like clockwork), the wired-but-tired, hair loss, zero libido, heat and sunlight avoidance, etc. etc. A lot of the symptoms sure do overlap. I don't know what's what anymore.
Hope you don't mind my comment, but many of these symptoms, though not all, are associated with iron dyshomeostasis. Iron can accumulate in organs and disrupt their function.

Iron often accumulates in the pituitary gland and can cause a similar low cortisol situation to Addison's. Iron can cause hyperpigmentation too.
 

Crux

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has anyone been here and moved their levels up without steroids?
I for one, haven't been able to increase cortisol without steroids. I did use huge amounts of progesterone cream for a time, which put my cortisol in the normal range, but the progesterone level was triple normal range.
 
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I've had the salivary cortisol test done twice now a few years apart - low range across the day in both tests. But my serum cortisol is within range. Anyone have any ideas as to why or suggestions as to what to do about it?
 

Wayne

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Anyone have any ideas as to why or suggestions as to what to do about it?
Dr. William Jeffries, who spent his entire medical career studying low-dose hydrocortisone, didn't believe any of the available tests were 100% reliable. He said cortisol levels fluctuate a lot throughout the day, depending any number of variables. He came to the conclusion that that the only way to truly know whether you need supplementation or not is to do a trial run, and see if things improve within a couple week period. -- I noticed dramatic improvements within 10-15 minutes.
 

sunshine44

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Dr. William Jeffries, who spent his entire medical career studying low-dose hydrocortisone, didn't believe any of the available tests were 100% reliable. He said cortisol levels fluctuate a lot throughout the day, depending any number of variables. He came to the conclusion that that the only way to truly know whether you need supplementation or not is to do a trial run, and see if things improve within a couple week period. -- I noticed dramatic improvements within 10-15 minutes.
this is exactly what I was wondering. I think its highly probable.
 
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Dr. William Jeffries, who spent his entire medical career studying low-dose hydrocortisone, didn't believe any of the available tests were 100% reliable. He said cortisol levels fluctuate a lot throughout the day, depending any number of variables. He came to the conclusion that that the only way to truly know whether you need supplementation or not is to do a trial run, and see if things improve within a couple week period. -- I noticed dramatic improvements within 10-15 minutes.
I've used prednisone is low doses (5mg) for a week when things have been really bad and it has helped (I'm asthmatic so always have some in the house for that reason). I wasn't sure if the benefits were from increasing cortisol or lowering inflammation - possibly both. But it definitely improves my level of function and perception of well-being.

My doctor isn't too impressed with my experimentation, and I have to say that knowing the long term side effects I'm not too keen on using it long term. I suppose it comes down to the quality of life now vs long term implications debate... Now to see if I can get another prescription....
 

Wayne

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I suppose it comes down to the quality of life now vs long term implications debate...
@Haley -- My understanding is that prednisone and other non-bioidentical cortisol steroids are in general about 4x stronger than bioidentical cortisol. The healthy body normally makes about 40 mg of cortisol per day, and my own supplementation of 20 mg is only about half that amount.

Staying under 40 mg. prevents the adrenal glands from shutting down, as the body is still telling the adrenal glands there's not enough cortisol, and so continue to make it to get to an optimal level. -- I would assume it would be somewhat the same with prednisone, where your 5 mg. would be roughly equal to 20 mg. of cortisol.
 

taniaaust1

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so a few years ago I had high cortisol...

I have been having horrific symptoms suggesting low cortisol after my August crash. Cardiologist thought it was addisons but was not.

When in hospital they only tested my pm cortisol which was fine but never am.

I don't want another thing to worry about, I am unable to comfortably leave house for now (bedridden)….

has anyone been here and moved their levels up without steroids?

I hate google sometimes.

Would love to hear from someone whom has been here...maybe all bedridden people are low on cortisol?
3 out of 4 of my cortisol tests were out of normal range - LOW but that only shows up when I do 24hr cortisol urine testing. I've got no idea at what time it must go extremely low to affect a 24hr urine reading as whenever I get blood tests done "during the day" its fine or even at middle range.

So anyway, due to this I suggest a 24hr urine collection (they have special bottles for this with a special perservate or something in the bottom of them to mix with the urine) and for that form of testing to be done if nothing showed up as being abnormal on blood test. (maybe I produce no cortisol or something when asleep?).

With my low coritsol, unfortunately low dose treatment for that did not help my symptoms. Dr was not willing to treat me with more than low dose drugs for the low cortisol.

I suspect skin may be darker then it should be due to the issues with cortisol. I hardly ever get out in the sun so should not have a good tan (I have no tan lines) as I spend most of my time in bed and only get taken out twice a week by a support worker for a very short time (about 1.5hrs each time) but I look tanned as i used to be when I spent lots of time in the sun (I used to work outside as a gardener and did outside sports).
 
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