A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

So basically, how do I treat low cortisol problem?

Discussion in 'Adrenal Dysfunction' started by Jensen, Mar 30, 2016.

  1. Jensen

    Jensen

    Messages:
    7
    Likes:
    0
    I'm housebound/bedbound (don't know which one exactly),so I think my cortisol is low
    most of the times.I'm sick since 2 decades and certainly I'm in the late stages of the disease-
    so low cortisol.I am satisfied from the suma root and nettle leaf powders because they give me energy and stress relief.But is this the right treatment for low cortisol-with adaptogens? -
    "i have come to learn that low cortisol individuals and the usual "adrenal support" herbs like siberian ginseng, panax ginseng, schizandra, etc. do not go together. They are announced as "adaptogenic" which is true, but only for high cortisol or fluctuating cortisol levels. If you are all out low, these herbs act to lower serum cortisol even more or suppress the much need cortisol by your body and gives you "fake" energy or what the chinese would say, "excess yang, using up the kidney yin reserves". basically, you have no substance in your kidneys and yet are lighting the fire even more."
    So should I stop taking suma and nettle combo,despite giving me better energy, and take rehmannia as it raises cortisol?-
    "Rebuilding the YIN should be the primary treatment as the chinese say there can never be too much YIN. Rehmannia Six is apparently a good formula for this and it takes about 3 months to slowly nourish the body. "
    Also what about hydrocortisone for low cortisol?I think it's a good idea-20mg hydrocortisone per day-a dose
    which won't suppress the adrenals?
    What about rotating Prednisone/Medrol/Dexamethasone every day in order to avoid long term steroid side effects?
    Does coffee make my energy worse in long term?I can't stop the coffee because it gives me so much energy,I simply can not believe it's bad for my energy long term.I've read somewhere coffee helps with production of energy?
     
    Last edited: Mar 30, 2016
  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    1,947
    Likes:
    4,893
    USA
    There is no way to know if you have low or high cortisol based on how you feel. You could ask your doctor to order an 8 a.m. blood cortisol level or you could buy a saliva test kit that will test your saliva 4x over a 24-hour period (cost ~$120).

    I would hold off treating yourself until you know where your cortisol levels stand. You could make yourself worse if you are trying to raise your cortisol level when it is already high.

    I've had both low and high cortisol levels over the course of this illness (25 years) and I couldn't tell the difference by how I was feeling.
     
    Kati, Little Bluestem and South like this.
  3. WoolPippi

    WoolPippi Senior Member

    Messages:
    506
    Likes:
    1,361
    Netherlands
    The only remedy for low cortisol is hydrocortisone supplementation. I'm on it.
    1. First you do some blood tests to determine if you have indeed problems caused by low cortisol. The blood levels to be tested are not "cortisol" but the things it's supposed to do in your body: renin, acth, elecrolytes, thyroid, sex hormones etc. Go to AddisonsSupport.com for relevant information.
    2. You learn about which symptoms are indicative of too low cortisol and adrenal insufficiency.
    3. Then you educate yourself on hydrocortison and on how doctors see Adrenal Insufficiency. You learn how the research was done. How the hype of angst of too much supplementation came into being and is now widespread amongst medical en normal people alike. You'll learn there are as few doctors who know the ins and outs of HC supplementation as there are doctors who know the ins and outs of ME.
    4. Then you go to forums where people actual live with supplementation and learn how they live and how hydrocortisone acts in normal bodies. You learn about the symptoms they look out for. The blood tests they do to monitor they're well being.
    Then you do a trial for 1 week with Hydrocortison, applying all you have learned. You go by symptoms and you dose physiologically (meaning increments of 5 mg or 10 mg per dose + looking at a total daily dose of 20 to 50 mg per day + with 2/3rds of this dose taking before noon so you mimic the natural curve of someone with healthy adrenals.)

    This is how all HRT should be done: dose by symptoms, dose physiologically, monitor relevant blood levels every 6 months.

    One week of this "high" HC supplementation will not shut your adrenals down.

    I found it hard to distinguish between adrenal symptoms and ME symptoms. They are of course interconnected.
    I found the Wired & Tired to be solely ME. Also Methylation problems. Detox and heavy metals. Post-extertion malaise.

    Solely adrenals = the low blood pressure thing; nausea; crying at irrelevant things; not able to take a warmish shower or sit up for two hours on end. Light poo/no bile.
    Brainfog is both. Digestive problems too. Hormones too I guess. Fatigue too. Noise sensitivity.
     
    Ninan likes this.
  4. Mikee5

    Mikee5

    Messages:
    31
    Likes:
    9
    So what does one do when they're suffering with chronically low cortisol and supplementation ranging from hydrocortisone to adrenal cortex don't help? I always experience adverse reactions to supplements that are suppose to be relieving my symptoms and supporting my adrenals, and my adrenal fatigue is confirmed via a saliva test.

    Even micro doses of adrenal cortex (about 10g, 1/5th of the capsule) seem to induce neurological symptoms and aggravate my adrenal fatigue. How can this is be addressed? It makes treatment impossible.
     
  5. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,214
    Cincinnati, OH, USA
    I have this same issue:

    a) supplement with sodium (salt), magnesium and potassium as needed (this is not a fix but will help with symptoms from the loss of electrolytes caused by adrenal fatigue). I supplement 4 times a day, but only use salt if I'm having extra stress and craving salt.

    b) Dr. Wilson's Adrenal Rebuilder - this is glands with the hormones taken out. I've tried most all of the traditional treatments such as ACE, DHEA, etc. They're all too overstimulating. Dr. Wilson's Adrenal Rebuilder is the only thing I've found I can tolerate. Even then, at most 1/4 of one pill. And only if I'm having a period of extra stress which is impacting my adrenals. Otherwise, even that is too overstimulating.

    c) test for and remove mercury (or other toxic metals) - my adrenals were a flat line (almost zero) for many years. After getting my last mercury filling removed, they're now at about 50% of normal. This is still adrenal fatigue, but a great improvement. I definitely have mercury toxicity and am getting ready to do Cutler frequent dose chelation. I suggest doing only this type of chelation unless you want to get worse (learned from hard experience).

    I have links to Cutler's protocol and testing in my signature link.

    ps. there seem to be two types of people - those that respond well to hydrocortisone or glandulars and those that don't. I believe this is due to the cause of the adrenal fatigue. There are at least two types -

    Type 1 which is primary adrenal insufficiency - the adrenal glands are themselves fatigued.

    Type 2 which is secondary adrenal insufficency - the adrenal glands are fine - the problem is with faulty signaling from the hypothalamus and pituitary.

    There is no way to tell from an adrenal saliva test - they both look the same. I believe I am a Type 2 based on my poor response to ACE etc.
     
    Last edited: Apr 5, 2016
    Ninan and WoolPippi like this.
  6. WoolPippi

    WoolPippi Senior Member

    Messages:
    506
    Likes:
    1,361
    Netherlands
    I'm sorry, I guess I don't understand.

    Hydrocortison is not a supplement. It is a drug. You need a doctor prescribing it to you.
    It is converted into cortisol in the liver. It gives you higher levels of cortisol. It IS higher levels of cortisol.

    If you take hydrocortison and do not end up with cortisol in the body, there's something very rare wrong with your liver. You should have a dr. look at the liver enzyms that are responsible for the convertion, they are CYP3A4, CYP3A5, CYP3A7, CYP11b1, CYP11B2 and CYP2C8. source drugsbank.ca
    One or all of them must be working superslow. I'd say this is a life endangering condition. A rare one.

    Or it could be this: as a rule only 10% of a drug you take orally ends up in your blood stream. The liver filters out the rest. It can be your liver takes out even more and you need higher intake than usually prescribed. Perhaps it even destroys your own cortisol?

    I've got that case with one of the enzyms that converts drugs for blood thinning and Progesteron. It's CYP2C19. It will convert blood thinning drugs into active ingredients like crazy and I end up with too high levels (it will let through 60% instead of 10%.) I need serious lower doses than other people.
    But for an oral drug that doesn't need converting, like Progesteron, it also works on it like crazy and I only end up with 1 % in my blood stream instead of the expected 10%. For this I need higher doses than other people.
    It also destroys any of my own Progesteron it can get its hands on, I'm permanently low on Prog.

    So it depends on which enzym does what and whether it's upregulated or downregulated. It also depends what you put in your mouth: a bodily substance or a drug that needs converting before it can become active.
    Since Hydrocortison needs converting I'm thinking a slow enzym. But this is all theorizing, I know nothing.

    There's also cortisol that is not hydrocortison. It's any cortisol that gets injected. Solu-Cortef is one. Prednison injection is another.
    An upregulated enzyme will break down any and all it can get its hands on, lowering your blood levels faster than in any patient your doctor has ever seen. But it's not unheard of so this could be something to research.
    I do not know which liver enzym is responsible for the break down of cortisol though.

    As an aside: when you do need daily hydrocortison supplementation from 20 to 50 mg per day it means your adrenals are not working properly to begin with. They cannot give you the cortisol you need in case of an emergency.
    This means you are in immediate danger of going into shock should you ever encounter a trauma, dehydration or great stress. This is life threatening, it's called an Addisonian crisis, and you need cortisol from an outside source immediately to survive.

    This can be done by chewing on the hydrocortison tablets you should always carry with you, they enter the blood stream via the cheek, travel to the liver and get converted into cortisol.
    The alternative is an intra muscular injection with Solu-Cortef, 100 ml. This is pure cortisol, no liver needed. This is like an epi-pen for people with faulty adrenals: life saving and a big shock to the body when administered. Only for emergencies.

    I'm saying: when you find you need cortisol replacement every day in a physiologically doses (20 - 50 mg per day) to ease symptoms then your adrenals are indeed faulty and you have a documented disease. We're not talking supplements. We're talking a serious disease from which people can readily die. Just like from severe allergies.

    PS parrotting Caledonia's signage: Disclaimer: I am not a medical professional, and nothing I say should be considered medical advice.
     
  7. paul80

    paul80 Senior Member

    Messages:
    217
    Likes:
    184
    @WoolPippi or anyone else.

    Do you think this could be adrenal fatigue based on these saliva results:
    results.png
    i can't sit up for longer than about 90 minutes so i thought it might be my adrenals but i'm not sure based on these results.
     
  8. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,214
    Cincinnati, OH, USA
    Yes - you have three points low on the cortisol curve. DHEA is borderline low (DHEA tracks along with cortisol, so if cortisol is low, DHEA will be too).
     
  9. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

    Messages:
    252
    Likes:
    877
    @WoolPippi - your post was really interesting. Which type of doctor helped you with learning that information about your liver detox enzymes? Thanks.
     
  10. WoolPippi

    WoolPippi Senior Member

    Messages:
    506
    Likes:
    1,361
    Netherlands
    My GP who is genuinely interested in the Methylation Cycle.

    He picked up on the CYP2C19 on my Genetic Genie detox profile and explained to me what it means to be an "ultrafast metabolizer". It's mainstream knowledge in generic medicine now and it's something pharmacies in the Netherlands record in your file.

    Another famous one is CYP2D6 that makes codeine into morphine. For slow metabolizers codeine doesn't work and they are accused of drug seeking. Fast metabolizers make it into morphine straight away and get high from regular dose of codeine.

    Another one is a CYP that's for Warfarin and ends up poisoning people with too high levels in their blood because it doesn't clear the medicine. That's CYP2C9 I believe.

    I myself have an enzym that's supposed to clear excitatory neurotransmitters but it doesn't work. I'm on a permanent, build in MAO A inhibitor.

    my GP showed me http://www.drugbank.ca that lists all enzymes and targets and carriers for every drug on the market. You can search any drug in the search box on the top right.

    In colour, on the top left, you can skip to relevant enzymes. You can look up your own enzymes/polymorphisms using your 23andme data file and snpedia or somesuch to see what's considered regular and what not.
     
    Paralee, PatJ and GreyOwl like this.
  11. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

    Messages:
    252
    Likes:
    877
  12. Paralee

    Paralee Senior Member

    Messages:
    493
    Likes:
    536
    USA
    @WoolPippi , thanks so much for that website. I looked through it and of course didn't see any "rs" snps so maybe I can figure a few things out when I get my computer back from the puterpital again.

    MS10 is literally eating my lunch, I mean computer.
     
    WoolPippi likes this.
  13. drob31

    drob31 Senior Member

    Messages:
    1,192
    Likes:
    674
    Cortisol may be low because of another factor.

    Some factor (pathogen/autoimmune) > HPA-axis dysfunction/endocrine/CNS > low cortisol.
     

See more popular forum discussions.

Share This Page