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Seeking help w "Adrenal Insufficiency" and low cortisol

Discussion in 'Hormones' started by Rrrr, Dec 17, 2016.

  1. Rrrr

    Rrrr Senior Member

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    Hello PR community!

    I am looking for help with my new diagnosis of Adrenal Insufficiency. Any treatment input you can offer, I would be quite grateful.

    Background
    - I've been sick with ME for 27 yrs. Much of it spent homebound/bedridden.
    - Recently my exhaustion became so extreme I did not know if I would survive, literally. It was likely an "adrenal crisis" (as described here: https://www.niddk.nih.gov/health-in...ciency-addisons-disease/Pages/fact-sheet.aspx).​

    Test results (via Quest Labs)
    - My sodium & chloride levels are way below ref. range, which happens w/ Adrenal Insufficiency.
    - Potassium level is in the normal range, but low.
    - Calcium level is in the ref. range but high (it always is).
    - EBV is active (it often is, and has been for 27 yrs).​

    Adrenal saliva test results (also via Quest Lab)
    0.06 at 6:30 am (8-10 am: ref range: 0.04-0.56 mcg/dl)
    0.04 at 11:30 am (noon-2 pm: ref range: < or = 0.21 mcg/dl)
    0.03 at 4:30 pm (4-6 pm: ref range: < or = 0.15 mcg/dl)
    <0.03 at 10:05 pm (10 pm-1am: ref range: < or = 0.09 mcg/dl)
    (Note: < or = means “less than or equal to”)​

    Why don’t they have something that says what is TOO low instead of just what is too high?

    After seeing my test results, my doctor said I have Adrenal Insufficiency. He wanted me to do a saline IV ASAP, but I'm homebound and can't get one at home.

    So my treatment regime for the Adrenal Insufficiency is as follows, and this is what I'm hoping to get your input on:

    Currently taking
    - Salt and water (lots!)
    - Licorice root extract (by Allergy Research Group)
    - Adrenal Health (by Gaia Herbs: Siberian Rhodiola root extract, Holy Basil extract, Oats milky seed extract, Ashwagandha root extract)
    - Adrenal (by Pure Encapsulation: Cow adrenal)
    - Kava Kava and/or Ativan on an "as needed" basis for the heart pounding and shaky feeling (anxiety?). These really help, though I'm trying to limit how often I take them.
    - Coconut water (lots) to get potassium and electrolytes up
    (I am also on other meds and supplements not related to Adrenal Insufficiency, such as Famvir and more.)​

    Suggested by doctor, but not yet started
    - GABA Calm (by Source Naturals)
    - Theanine (by Jarrow)
    - Cortef (a hydrocortisone): My doctor said I could hold off on this, as I react badly to most meds, and also I heard how hard it is to get off of Cortef once you start it. If you have experience with Cortef, I'd welcome hearing about it.​

    Confusing and complicting things
    - In the past, my blood pressure was always to low. But now with this episode my blood pressure (BP) is very high, and the weird thing is that usually with Adrenal Insufficiency blood pressure is low. Taking in more salt and licorice will make my BP higher, one would think. But so far it is not making my BP higher all the time, just sometimes.
    - My potassium is low. In the reference range, but on the low end. Usually with Adrenal Insufficiency potassium is high.​

    Any other ideas about what I should take to remedy the Adrenal Insufficiency?

    Thanks in advance for your thoughts!
     
    Last edited: Dec 18, 2016
  2. Mary

    Mary Senior Member

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    @Rrrr - I agree, your saliva test results are confusing. When I've had the Adrenal Stress Index Test done, it always shows upper and lower limits, not just what is too high.

    Re low potassium - that's something many of us deal with. I have to take 800 - 1000 mg of potassium gluconate daily (in divided doses), as well as low-sodium V8 (900 mg in 8 oz). Low potassium also can contribute to high blood pressure, so that may be why it's higher right now. I have taken licorice in very small doses and I react very quickly to it, usually within a day or 2 my BP is up with it.

    Your regimen looks pretty good, I think, overall. An adrenal glandular helped me the most with my adrenals and I see you are taking one. I had to take a pretty high dose initially - about 3 or 4 times the recommended dose, for probably close to 2 weeks (it's been a long time since I needed that much). My chiropractor who does muscle testing determined the dose and it worked really well for me, and then I gradually lowered it. I'm petty sure that if I'd just taken the recommended dose initially, it would not have done much for me, my adrenals were too weak.

    A good B complex is important. Pantothenic acid, one of the Bs, is crucial for adrenal health; I've taken extra pantothenic acid for years - 500 mg., as well a B complex, and some of the other Bs.

    I would hold off too on the Cortef.

    GABA and l-theanine are good. I also take niacin at night for sleep - it enhances the effect of GABA. Niacin can slow down methylation and taken during the day it makes me tired, so I don't take it then.
     
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  3. JaimeS

    JaimeS Senior Member

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    A little too high in the morning, low in the afternoon is classic for adrenal dysfunction.

    But -- and we've discussed this before, a few times on PR -- I don't find saliva tests reliable. If you can find a way, I would get this measured in the blood, not the saliva. For example, I had saliva tests and then later, blood tests. They brought back wildly differing results. In ME, though, it could be that they were changing. I also had Addison's-like symptoms when I was moderate-severe, down to the skin pigmentation differences in folds of the skin (in my case, under each arm and behind my knees).

    Your first three things in the 'currently taking' list all look okay, though Rhodiola makes my heart race and impairs my sleep at what most consider to be a reasonable dose. I've found it very helpful taken two or three drops at a time for exhaustion, but even then the efficacy wears off. At a regular dose I had hyperexcitatory symptoms followed by crashes. This was reliable, as I tried it several times. Be cautious with this one. In fact, I'd ditch that adrenal blend and go for this one instead. Note that Rhodiola is still in it, but it's one of the last ingredients, not the first. In this blend, the first is Siberian ginseng, which is more supportive / less excitatory than Panax ginseng or Chinese ginseng.

    Be cautious with Ashwaghanda, too; I don't tend to fool w/serotinergic stuff. But because you have such frank adrenal insufficiency symptoms, it might be a good idea.

    I've tried GABA calm -- didn't like it.

    I would also hold off on the Cortef.

    Thanks for the A2A! And as always, not a physician, not medical advice, etc.

    J
     
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  4. Rrrr

    Rrrr Senior Member

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    @Mary and @JaimeS THANK YOU so much for your input!!

    The Adrenal Health supp (by Gaia Herbs) has helped me before, but that was years ago. All new cells in my body by now. :)
     
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  5. Rrrr

    Rrrr Senior Member

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  6. Rrrr

    Rrrr Senior Member

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    @JaimeS do you know what the blood test is that i should do? i suggested an adrenal/cortisol blood test to my doc and he said there is none, that i had to do saliva.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Pregnenolone and or dhea is an option. Start low go slow with doses. Ebv probably contributing to it avs like famvir is another option to talk over with dr.
     
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  8. Rrrr

    Rrrr Senior Member

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    Thanks @heapsreal! i am actually already on Famvir 500 mg BID (twice per day). before this crash i was on it once per day, but when this crash started, i added the 2nd dose.

    regarding pregnenolone: I once tried this about 20 years ago and hallucinated! first and only time that has ever happened to me. so i tend to keep away from that specific hormone/med. but i have never tried DHEA. (@JaimeS what do you think of these two supps?)
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Can take a while for avs to get on top of things. I sometimes jack the dose up if i feel worse with viral symptoms and painful lymph nodes.

    Pregnenolone some cant tolerate and it took me awhile. I started to high at 50mg and over hyped me and had terrible insomnia. I started with 5mg every few days and slow upped it to where i now tolerate 50mg. Dhea was similar but not as strong stimulation wise. Now if i stop using them i lose a certain sense of wellbeing.
     
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  10. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Has your doctor told you whether you have primary or secondary adrenal insufficiency? They are treated differently. Primary adrenal insufficiency (AI) is known as Addison's disease.

    http://www.clevelandclinicmeded.com...inology/diseases-of-the-adrenal-gland/#cesec2

    It looks to me like you need a morning ( 7 a.m. to 9 a.m.) serum cortisol test. If that is low, then you should next have an ACTH stimulation test, which is also done using blood. This will differentiate between secondary adrenal insufficiency and Addison's disease. They can be further differentiated with a serum ACTH measurement. See the following algorithm:
    [​IMG]

    The standard cosyntropin stimulation test (CST) MAY be used as the FIRST-line test for evaluation of adrenal function, if your doctor would allow it. That way you could skip the preliminary 7 a.m.- 9 a.m. blood test.
     
  11. Rrrr

    Rrrr Senior Member

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    @CFS_for_19_years VERY helpful! Thank you for taking the time to write all that.

    @heapsreal Thanks for your thoughts. I'll share with my doctor. I did try increasing the Famvir more, and I ended up throwing up. I may try again, but slower. I really appreciate your help!
     
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  12. JaimeS

    JaimeS Senior Member

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    I'm afraid it does. If you limit what you can take to glycerites, you're going to limit what you are able to take by quite a lot. I'm sorry to hear it -- most of the herbs above are roots, and extracting them in a tea is going to be much less effective than a tincture or a glycerite.

    @Rrrr -- I'm sorry to say that my body was like the Wheel of Fortune of Endocrine Disorders at onset. One week, symptoms of diabetes insipidus. The next week, Addison's. A good metaphor: I felt like a sputtering engine. Levels would drop of this-or-that hormone or neurotransmitter, and my body would go into panic mode and produce a burst of what-have-you before choking out again. Incredibly uncomfortable and awful, and symptoms were so variable! This lasted about 4 - 6 months before I saw significant improvement. After I found the right supplements, it all went way faster, though -- at first I had this ridiculous idea that I couldn't take anything to alter my condition or doctors would never figure out what was wrong with me. Pffft!

    What.

    Yes, you can absolutely measure cortisol in the blood. It's a pain in the butt because you have to have it taken several times, or have a line put in. All 'provocative' testing of the HPA axis requires that you be able to measure these in the blood. I don't know if you want or even should have provocative testing because it's hard on the body, but it sure would be helpful to know if it's your hypothalamus, pituitary, or adrenals that are falling down on the job. For example, if your pituitary isn't producing ACTH, you'd probably have screwy cortisol. By just measuring the cortisol, there's no way to tell which is to blame.

    I see someone beat me to the punch, there. Exactly!

    Re: pregnenalone, I've heard what you've heard, @Rrrr -- that people have wildly differing reactions -- and never tried it. I rely on Vitex to stabilize my hormones, and sometimes black cohosh.
     
  13. Rrrr

    Rrrr Senior Member

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    @JaimeS and @CFS_for_19_years My doctor mentioned Addisons, saying he wondered if I might have it, then in a later email he told me I do not have Addisions disease. But no new test results had come in in between those two comments. So how did he come to that assessment with the test results (the same ones I put in my first post on this thread)?

    In terms of the blood test for coritsol: I am pretty sure my doctor's nurse said there is no blood test for it. But maybe I misheard them? Or maybe they mean a saliva test would tell us more?
     
  14. caledonia

    caledonia

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    I don't know if I have that much to add, but if your cortisol is low at all four points, consider taking salt, magnesium and potassium (electrolytes) four times a day.

    This works well for me, as they deplete rapidly.
     
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  15. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    It's possible that your doctor looked at your low-ish potassium (and/or other results) and thought it was inconsistent with Addison's disease. Have a look at this:
    https://www.merckmanuals.com/profes...c-disorders/adrenal-disorders/addison-disease
    https://www.merckmanuals.com/profes...nal-disorders/secondary-adrenal-insufficiency
    Secondary Adrenal Insufficiency
    I have no clue what your doctor's nurse meant. Blood tests for cortisol are considered the gold standard for measuring cortisol and have been around a whole lot longer than saliva tests. I'm not sure more saliva tests would tell you any more than you already know. You're obviously low across all time points.

    :confused: See above.
     
    Last edited: Dec 18, 2016
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  16. smartin

    smartin

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    You need to get yourself tested for adrenal autoantibodies asap!!!. And the ACTH test - in an inpatient testing centre! Just in case you need immediate medical care. These are the proper tests for Addison's Disease.

    And the number for the first result of the morning is right at the bottom of the normal range - if the numbers you have posted are correct.

    You have given a range of 0.04 to 0.56 mcg/dl (for the 8 - 10 am ref range)

    Your result is 0.06 - which is 0.02 above the bottom of the normal range. Please look closely at the numbers.

    If your result was 0.6 (not 0.06), then it would be high.

    The other three results are all BELOW the respective reference range.

    By all means, do an 8 am cortisol blood test - (ensure that you have fasted). However, in other countries (UK), they are not considered reliable indicators of blood cortisol levels (but the NHS won't do saliva tests!).

    You should consider finding an endocrinologist who is knowledgeable and experienced in treating Addison's Disease. A simple infection will be critical to you because, in Addison's Disease, it is the infections which are the most dangerous. Furthermore, your recent 'adrenal crisis' may have been just that - an adrenal crisis!!

    Cortef or hydrocortisone is absolutely necessary if you have Addisons. You would be taking a physiological (replacement) dose NOT a theraputic (immune system suppressing) dose. Also given would be fludrocortisone acetate (Florinef).
     
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  17. Rrrr

    Rrrr Senior Member

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    @smartin thank you! you said to test right away for "adrenal autoantibodies". is that test the same as the Addisons test everyone is talking about, or a separate test?
     
  18. Rrrr

    Rrrr Senior Member

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    @JaimeS you wrote that my morning saliva was a bit too high, but you must have meant low??
     
  19. Rrrr

    Rrrr Senior Member

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    @smartin I heard from my doctor (on a Sunday!) via the clinic's email (called a patient portal). His answer to how he knows I don't have Addisions Disease is that my blood pressure is not low. He is right. In fact, with this whole episode, it is often too high (and I'm not sure why? Anxiety?)
     
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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Do you have diabetes insipidus type symptoms ie large urine output?

    Vasopressin which is apart of adrenal function can be low or just not effective in controlling fluid and electrolyte balance. Its another hormone that may need replacing in addisons and adrenal dysfunction.
     
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