Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Low Cortisol

Discussion in 'General ME/CFS Discussion' started by Cubbies2016, Aug 25, 2016.

  1. Cubbies2016

    Cubbies2016

    Messages:
    19
    Likes:
    6
    Hello,

    I recently had a saliva cortisol DHEA cortisol test and my results were scary. Very low AM. Low the rest of the day and normal at bedtime. Have any of you had low cortisol and if so did you try anything that helped ?
     
    Cyndia likes this.
  2. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Hi @Cubbies2016 i had a critical low AM serum cortisol. It was right before Christmas, one year. I was started on Cortef and that didn't changed anything for me, felt horrible. Even a few weeks later, despite decent amount of cortex my AM cortisol was a bit better but still critical low. The endo decided to taper me off the steroids to do ACTH challenge test (to rule out Addison) and that was normal. The taper of the steroid was one of the worst part of the whole ordeal.

    It is not unusual for us ME patients to have deficiencies on that level but it is not well understood. Personally I think it is a downstream effect of HPA-axis dysregulation. I have asked my dr to assess pituitary function but she has not been helpful.

    I am simply sharing my experience, yours might be quite different.

    Best, Kati
     
    TrixieStix, Sandman00747 and Ninan like this.
  3. Groggy Doggy

    Groggy Doggy Senior Member

    Messages:
    1,127
    Likes:
    4,134
    I think many of our issues can be traced back to the pituitary gland. It's only the size of a tiny pea , but has a large role in maintaining our hormone homeostasis: (it is small but mighty)

    "HGH (human growth hormone)
    TSH (thyroid stimulating hormone)
    ACTH (Adrenocorticotropic hormone)
    hypothalamic corticotropin-releasing hormone (CRH)
    Beta-endorphin
    Luteotropic' hormone (LTH)
    Follicle-stimulating hormone (FSH)
    Gonadotropin-Releasing Hormone (GnRH)
    Melanocyte–stimulating hormone (MSH)
    Antidiuretic hormone (ADH)
    arginine vasopressin (AVP)
    Oxytocin

    Hormones
    Hormones secreted from the pituitary gland help control the following body processes:

    https://en.wikipedia.org/wiki/Pituitary_gland

    http://www.yourhormones.info/glands/pituitary_gland.aspx
     
    Cyndia likes this.
  4. Cubbies2016

    Cubbies2016

    Messages:
    19
    Likes:
    6
    Kati,

    Thanks for replying. Can I ask how long you were on Cortef? Did it make you feel worse ?
     
  5. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Only about 6 weeks. It did not make me feel better, nor did it made me worse. I was on 20 mg in morning and 10 mg in the afternoon. It was the tapering off that was so absolutely horrible.
     
  6. Cubbies2016

    Cubbies2016

    Messages:
    19
    Likes:
    6
    Sorry for all the questions but trying to understand as I'm considering HC as my cortisol is extremely low. If it increased your cortisol how come you came off of it? Was your low cortisol caused by stress or a thyroid issue? I'm assuming that your still struggling with low cortisol. Is that correct ?
     
  7. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    My Cortisol while on Cortef, was stll critical low. Not as low. We tapered off the Cortef so I could get an ACTH challenge test, which was normal.
     
  8. Cubbies2016

    Cubbies2016

    Messages:
    19
    Likes:
    6
    Im not a Dr but maybe they took you off it to soon. You showed small signs of improvement. Maybe if you stayed on it longer you would have improved more. What do you think? What kind of symptoms did you have coming off Cortef? Are you still as ill or have you improved at all using other methods ?
     
  9. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    My AM Cortisol recovered all by itself. It is not a drug you want to stay on for a long time. Long term side effects which include osteoporosis are not good.

    In general it is well known that steroids are not a treatment for ME.
     
  10. Cubbies2016

    Cubbies2016

    Messages:
    19
    Likes:
    6
    Thanks Kati. Though I was diagnosed with CFS/ME after dealing with all the symptoms in their severest state for 8 months I often wonder if I instead have Adrenal Fatigue. Aside from supplements, hydrocortisone is often prescribed in severe cases of low cortisol which is what I have.
     
  11. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Adrenal fatigue is not a medical diagnosis. It is more of the realm of alternative medicine.

    However it would be interesting to consider cortisol and hormones in the grand scheme of metabolomics.

    In your case i hope they ruled out Addison's disease.
     
    Last edited: Sep 11, 2016
  12. Cubbies2016

    Cubbies2016

    Messages:
    19
    Likes:
    6
    Thanks Katie. Addisons has been ruled out. Adrenal Fatgue does exist and one day standard medicine will recognize it just like they are starting to recognize CFS/ME. If someone has low cortisol yet passes the ACTH stimulation test they still need to be treated one way or another. There are to many people suffering from both for it not to be recognized. I don't want to take hydrocortisone. Based on my extremel low cortisol levels and what I've found online, supplements and a healthy diet might not be enough to restore my cortisol. I'll see what the doctor says tomorrow.
     
  13. Cyndia

    Cyndia

    Messages:
    28
    Likes:
    33
    Hi Cubbies2016 I also just got my saliva cortisol levels checked and they are very low. My naturopath recommended I continue with Ashwaganda 500 mg 3X/day and start with Pregnenalone 25 mg with breakfast and a week later start DHEA 5-10 mg sublingual once daily. These are cortisol precursors.

    Other things she's recommended overall for my current status with ME/CFS are: Licorice tea, an anti-inflammatory diet with emphasis on maintaining bloodsugar, & to add Rhodiola 200 mg am and noon, continue Theanine 100 mg 3x/day, Methylfolate with b-complex and D3 - 10K/day (my level was low).

    We'll see if any of this helps.
     
    Mary likes this.
  14. Cubbies2016

    Cubbies2016

    Messages:
    19
    Likes:
    6
    Hi Cyndia,
    Thanks for the reply. When my naturopath goy the results from my flatlined low cortisol, he suggested a couple of supplements. I then spoke to other dr's and also did some online research. Based on my results, I should have been prescribed hydrocortisone, which I just started today. I realize it's risks, but not being able to move for 2-3 years healing from supplements is not an option for me as I was in severe fatigue.
     
    Cyndia likes this.
  15. Mary

    Mary Senior Member

    Messages:
    2,779
    Likes:
    6,214
    Southern California
    Hi @Cubbies2016 - I've been wrestling with the same issue, how to raise my cortisol - my levels were slightly low - and was considering Cortef (recommended by my doctor) but have read so many negative things about it and have read about how difficult it can be to get off of. So I'm using licorice now. It's quite potent. Here's one article: http://www.adrenalfatiguefocus.org/using-licorice-root.html

    I also like what @Cynthia is doing - my doctor has had me on DHEA 25 mg. and pregnenelone 50 mg. a day for several years. Maybe this has helped prevent my cortisol from going even lower.
     
    Ninan and Cyndia like this.
  16. Ninan

    Ninan Senior Member

    Messages:
    511
    Likes:
    313
    Same situation here. Posted my hormone panel in General treatments. My doctor will probably propose DHEA and cortisol and/or pregnenelone but if I'm going to try it it's low dose. Scary stuff.
     
  17. Grigor

    Grigor Senior Member

    Messages:
    409
    Likes:
    916
    Amsterdam
    Old thread. But is anyone taking Dhea even when it's not low??
     
  18. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    311
    Likes:
    512
    Australia
    I took DHEA for several weeks (made by a compounding pharmacy on prescription) & got absolutely no benefit whatsoever. Ironically, on the afternoon I picked up my prescription, I'd already had one of most energetic days in years.
     
    Grigor and Sandman00747 like this.
  19. Cyndia

    Cyndia

    Messages:
    28
    Likes:
    33
    My update is that I'm taking a holiday from DHEA and Pregnenalone so I can retest my cortisol levels in 2 weeks to see if I've made progress. I found that I would crash from being overstimulated by rhodiola, same if I take B complex or the DHEA and Pregnenolone every day. I think if you aren't symptomatic don't take hormone precursors because it's one more thing your body has to manage. Or if you do, just take a couple mgs and not daily. I just ordered all of Dr Michael Lamb's books on adrenal fatigue to learn more.
     

See more popular forum discussions.

Share This Page