The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Low cortisol

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by LSLJ, Mar 14, 2017.

  1. LSLJ

    LSLJ Lara

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    I had a blood test that had low cortisol. The doctors originally said I had Addison's disease and for the 6 weeks I was waiting to see a specialist I believed I had Addison's and needed cortisol injections.

    Once the specialist said I did not have Addison's they pretty much turned a blind eye and expected me to go back to work and get on with my life. That id 'imagined' my symptoms.

    What are the normal abnormalities that show up on blood tests to indicate ME/CFS?
     
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  2. TrixieStix

    TrixieStix Senior Member

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    @LSLJ unfortunately there are no accepted bio-markers for ME/CFS. There are some tests that are useful, but even those do not that hold 100% true for every person with ME/CFS. That said a blood test called "Natural Killer Cell Funtion" is found to be abnormally low in many people with the disease. The problem is this is not always an easy test to get as only a few labs do it and the blood must be run within so many hours of it being drawn, and even if it is low that alone is still not enough to diagnose ME/CFS. What country/state are you in?

    In my case to get an ME/CFS diagnosis I went to various specialists (neurologist, MS specialist, rheumatologist, gastroenterologist) to rule out/exclude all the other potential causes for the symptoms. In my case I did not develop ME/CFS immediately after a viral infection like many do and instead my onset was slow and developed over a few years at the same time I was going through other unconnected health issues which made it harder to suss out. How did your symptoms come on?
     
    Last edited: Mar 15, 2017
  3. LSLJ

    LSLJ Lara

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    I knew something wasn't right as my energy was low and my digestion was poor - but no doctor could find anything stand out in my blood tests so nothing was done. I did get much worse after a kidney infection and taking antibiotics, they made me feel very ill and so the doctor took me off them. I still didn't feel well like I still had a kidney infection and the doctor said I was fine. They said maybe I was pregnant and that's why I was tired. (I wasn't) and I wasn't able to get out of bed for days on end.

    I then gradually improved a bit, enough to go to work but still felling this drag of no energy. I upped my exercise routines, gym, running, diet and then collapsed.

    I was in bed then for about 3 weeks and assumed I was crazy, around that time I broke up with my boyfriend so I convinced myself it must be a bit in my head. Tried to go back to work but after a couple of weeks I literally couldn't move. My body was in pain and my heart raced to the point of making me sick if I'd try to walk for more than about 30 seconds. I thought I was dying, I had no idea what was happening and the doctors - when someone could drive me to see one as I couldn't go alone (and loved alone at the time) they misdiagnosed Addison's as I said previously as I lost 7 kilos in 2 weeks and had pigmentation on my cheek and low cortisol blood test. It was only after seeing an autoimmune specialist she suggested ME and then my GP chased it up with a neurologist, and occupational therapists and psychologists from a specialist Chronic fatigue clinic.
    I was 'assessed' for 6 months before they'd let me on their self management course.

    That's all really, I have seen some other doctors and specialists but not much has come of it other than now being prescribed homeopathics and an acidophilus mix for my stomach/gut related issues. Like leaky gut.

    I hope that answers your questions? ☺
     
  4. charles shepherd

    charles shepherd Senior Member

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    Basic information from the Investigation section of the MEA purple book (2016 edition) on the assessment of hypocortisolaemia (low cortisol levels) and cases where Addison's disease (severe cortisol deficiency) needs to be excluded:

    ·Short synacthen (ACTH) test if plasma or urinary cortisol is low with symptoms (i.e. weight loss, nausea, pigmentation of non-sun exposed areas) and if routine screening tests suggest Addison’s disease (i.e. hypotension, low serum sodium, raised potassium).

    The short synacthen test may fail to identify people with ACTH deficiency due to hypothalamic or pituitary disorders.

    The insulin tolerance test remains the gold standard for diagnosing ACTH deficiency, with the other tests in reserve and to be interpreted in the light of clinical context.

    The basal 9am cortisol is also of contributory value.

    Cortisol is secreted in a pulsatile manner and has a diurnal variation (a peak in the morning and a trough at night) so measuring cortisol at random gives a poor indication of adrenal function in most cases.

    Cortisol measured at 9am can be used as a crude indicator.

    A measurement of > 500nmol/l suggests normal adrenal function and a measurement of < 165nmol/l suggests adrenal insufficiency.

    A measurement of < 100nmol/l at 9am is diagnostic of significant deficiency and requires urgent referral.


    Dr Charles Shepherd

    Hon Medical Adviser, MEA
     
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  5. LSLJ

    LSLJ Lara

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    Thank you!!!! Everything you've just written describes me. I also was re:tested for addisons at hospital at 8:45am - they just did one blood test. Wild this suffice? They ruled out Addison's and then had no answers and didn't keep testing. My energy levels follow that pattern.
    What country are you based in? I'd love to talk more or hear more on ACTH? Are you saying from my description above that it sounds like I have ACTH?

    Thank you,
    Lara
     
  6. LSLJ

    LSLJ Lara

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    Can you please let me know what tests you suggest I ask for by my GP and do you know of a specialist doctor based in London or England that you'd reccommend as I've been misdiagnosed for Addisons twice although my symptoms match?
     
  7. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    Your adrenals may be functioning very poorly.

    @LSLJ Dr.Michael Lam, M.D., M.P.H., A.B.A.A.M., is a specialist in adrenal and HPA axis issues. Unlike most conventional medicine practitioners (generally endocrinologists) who sadly just wait for the adrenals to fail and then put one on corticosteroids for life consequently leaving the adrenals non-functional;
    Dr. Lam actually specializes in trying to nurse and restore the adrenals and HPA axis back to health.

    Your body sounds as though it desperately needs rest and you may be pushing yourself well past capacity hence the collapse. I strongly urge you to avoid any and all stimulants - caffeine, etc. ... and exercise which demands too much from your body right now can make your health much worse.

    You want to avoid an adrenal crisis which can quickly become fatal and is definitely an emergency.
    Familiarize yourself with the warning signs online. An adrenal crisis is also known as an Addisonian Crisis although one may not have Addison's Disease. http://www.healthline.com/health/acute-adrenal-crisis#Overview1

    A Naturopathic (ND) or Functional Medicine Doctor may be more familiar with how to restore your adrenals - which are essential to life. You definitely need a practitioner who can address your particular issues especially with the problems that benzodiazepines create. Perhaps you can find one who is familiar here:
    http://www.naturopathy-uk.com/resources/practitioners-directory/

    An ND may want to monitor your cortisol patterns through salivary testing which can perhaps give a better picture of what is going on throughout the day and night with your cortisol production patterns.

    Dr. Lam has a website with a huge amount of free information, with no need to register or subscribe. Over time you may be interested in reading much on his site:
    https://www.drlam.com/articles/adrenalexhaustion.asp

    I have had serious adrenal and HPA axis issues and found no other doctor available who had enough knowledge essential to nurse adrenals to recovery. While I have not engaged his services as a client, the information he has provided has largely saved my life and adrenals. However I have long been dealing with known adrenal issues. This is not something to play around with on your own. I found most helpful his books: https://www.amazon.com/Adrenal-Fati...031066&sr=8-1&keywords=dr lam adrenal fatigue
    Also see:
    Adrenal Fatigue Syndrome - Reclaim Your Energy and Vitality with Clinically Proven Natural Programs, Advanced Symptoms of Adrenal Fatigue Syndrome, Adrenal Fatigue Syndrome Cookbook.

    All the best. :hug:
     
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  8. LSLJ

    LSLJ Lara

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    Thank you so very very much I will have a read through the links. Definitely sounds right for my symptoms and how I'm feeling.
     
  9. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @LSLJ One can have adrenal insufficiency which is not properly called Addison's Disease. The skin discoloration of Addison's is usually not seen in those with secondary or tertiary adrenal insufficiency.

    Before an adrenal crisis occurs, however, symptoms tend to come on gradually. There may be chronic fatigue, poor appetite, weight loss, weakness, cravings for salt, and frequent urination. Low blood pressure can lead to dizziness on standing. And many people have nausea, vomiting, or diarrhea. Pain deep within the back in the area of the kidneys (just below the rib cage) is possible.

    If you crave salt it may be extremely important to drink some water with salt added. When someone has an adrenal crisis it involves a particular kind of electrolyte imbalance. One usually needs salt and water and it is important to avoid potassium which may be too high, a state which is known as hyperkalemia.

    Likewise If you find that you have problems when eating a high potassium food such as potatoes, perhaps as in bowel upset, etc. you'd be wise to observe closely and possibly cut out all high potassium foods. There are many food lists online showing foods by potassium levels.

    Notice if your nose is getting dry inside, like hard as a beak, rather than the normal pliable moist state. That may mean you need more salt water. If you notice these conditions an adrenal crisis may be imminent in those with dysfunctional adrenals.

    It is important to eat regular meals and avoid hypoglycemia. Fasting could be disastrous.

    Avoid being around anyone with infectious diseases and crowds to reduce exposure to disease as contracting a disease could be disastrous.

    Illnesses, medical procedures, and surgery — The adrenal glands normally increase cortisol output when the body is stressed by illness, major medical procedures, or surgery. People with adrenal insufficiency do not have the ability to produce the cortisol demanded. But the adrenals will valiantly respond until they cannot. The risk of adrenal crisis increases as the adrenals try to respond to overwhelming demands. Rest and sleep are vital. Avoiding all stress is essential.

    Avoid drinking common sports electrolyte drinks like Gatorade because they usually have potassium in them.
    http://www.uptodate.com/contents/adrenal-insufficiency-addisons-disease-beyond-the-basics
    http://www.uptodate.com/contents/cl...renal-insufficiency-in-adults?source=see_link
    http://www.uptodate.com/contents/hyponatremia-and-hyperkalemia-in-adrenal-insufficiency
    http://www.merckmanuals.com/profess...c-disorders/adrenal-disorders/addison-disease

    Keep a log of what meds, supps, food and drinks you are consuming along with your reactions to observe patterns and determine potential causes. In an adrenal crisis you may not be able to communicate well and lose consciousness. This log may be helpful to those trying to diagnose you. Have some one check in with you regularly to make sure that you get emergency care as soon as possible if needed.

    It takes a while for the adrenals and HPA axis to recover - months to years. Adrenals need some particular nutrients to function and recover, which is well covered in Dr Lam's book: Adrenal Fatigue Syndrome: Reclaim Your Energy and Vitality with Clinically Proven Natural Programs

    I am not a doctor, but speak from unfortunate personal familiarity about this problem. I'm glad to hear you are researching this as it is quite a serious predicament. I do hope you find a good nutritionally oriented practitioner who will nurse your adrenals/hpa axis back to health.

    The consequence of adrenal failure is pretty grim. One will be dependent upon corticosteroid and other meds for life, which do not come close to providing the many steroids which the adrenals normally produce and in the ways and times that the adrenals provide. Corticosteroid meds are very damaging but those with true Addison's Disease require them to survive since their adrenals are essentially non-functional.
    Nursing adrenals back to health is the best possible outcome.

    There are some medications which suppress adrenal function resulting in low cortisol, such as opiate drugs. It would be wise to check on any medications and drugs you have taken to see if this is a cause of adrenal suppression.
    :bouquet:
     
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  10. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @LSLJ If I were in the UK, I might check out young Naturopath Marek Doyle, as I have found some of the articles on his website to be of interest in regard to poor adrenal/HPA axis function. These articles are free to view on his website: http://www.blueprintfitness.co.uk/category/adrenal-health/
    and at: http://www.adrenalfatiguefocus.org/
    Marek Doyle specializes in adrenal/hormonal balance, brain health, epigenetics, methylation, sleep and digestive function.

    There may be others in the UK who are even better equipped to handle these problems, but I do not know of them and have only run across Doyle in doing online research of poor adrenal function.
     
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  11. LSLJ

    LSLJ Lara

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    Thank you I'll check him out.
     
  12. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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  13. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Things to consider:
    How was this blood test performed and what level was it for them to say it was low?
    Was it 9am Fasting? This is the 'standard' way to show a true low result.
    They need to repeat it, many factors can cause a false low result such as the sample is affected by heat or it's not processed in time.

    Get a 24hr urine cortisol test, hospital based (or buy one online then your hospital can repeat it themselves) so there's absolutely no issue with postage and samples sitting in a queue causing false low results.

    What doctors don't understand is in ME CFS (genuinely ignorant), it's usually the brain that's dysfunctional not your adrenal glands. Either way to investigate this thoroughly you need a Short Synacthen Test in Hospital (you need one to rule out Addison's or similar) does not suffice. After this test, to be sure that your brain works correctly (which it won't if you have ME CFS) you need a Glucagon Stimulation test to stress your pituitary gland to produce cortisol, not your adrenal glands alone. In other words injecting you with synthetic ACTH is not the same effect on your brain in injecting you with Glucagon.

    Make sure you remember this. It's usually a neurological (central) low cortisol issue, not a primary adrenal failure issue. That's why the doctors give up on you, as they're lazy and cannot be bothered to investigate the next cause.
    Especially if you're paying for the tests and they know you can't afford them.

    In ME generally if someone put a lion in the room you'd produce masses of adrenaline (fear response), which is good, your wheelchair will suddenly become turbocharged!

    But.. on a day to day basis, the average levels of 9am (first morning) cortisol in an unstressed, non stressed state (NB: low blood sugar can false the cortisol test and make your cortisol go really high!) is low normal cortisol or borderline low - which isn't normal.

    Yet if you become mentally stressed (simply going to a hospital appointment) I imagine most ME patients cortisol would then be normal or even high - hence most doctors don't believe your story because they're lazy and give up at the first hurdle. Money is a good incentive for them, with endless customers coming through the door. What I've learnt is don't give up and do your research.

    Also don't rely on 'Micky Mouse' tests, make sure they give you Hospital based tests. I do all my tests on a stretcher. I've even had outpatients appointments on a stretcher - so if you or others are housebound or bed ridden they can and should accommodate your disabilities, after all ,it's a hospital where you need tests and the people are meant to be caring so if needed, gently remind them of this if they start blocking you on diagnostic tests that need to 'rule out' causes of potential reversible disability.
     
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  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This test is only done to rule out Cushing's disease/syndrome, a condition of consistently high cortisol. It should not be used to diagnose adrenal insufficiency.
     
  15. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hi there. Unfortunately in this instance, you're only 1/2 correct and have perhaps forgotten of the full spectrum of the usefulness of a person producing a 24hr urine sample for analysis for their clinician. Cushing's is indeed one condition the test is useful for suspicion of raised cortisol, such as from a pituitary adenoma.

    However, in the OP's post, we were introduced to a story of possible Addison's disease thus we are thinking along the lines of a lower level of cortisol which 'low normal' is a not uncommon result in ME CFS and as a first line, affordable test can be associated to the use of a 24hr urine cortisol test, hence I recommended it for the OP as they appear not to have had one.

    A reliable source, (Medlineplus a US Government website) confirms my original claim: That a 24hr Urine Cortisol test is indeed relevant to cortisol deficiency states:

    Also I hopefully made it clear in my post to the OP that I wasn't suggesting a final diagnosis by a urine 24hr cortisol test alone, as I wrote:

    ''Either way to investigate this thoroughly you need a short synacthen test in hospital''.

    Just wanted to make that clear in case people reading your message,think that a urine 24hr cortisol is not a useful diagnostic first line tool, when it is, especially if folks are housebound or bedridden and cannot get access to better tests due to the predicament our ghastly illnesses cause.

    Peace and only love. :hug:
     
    Last edited: Apr 2, 2017
  16. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    In any case, an 8 a.m. serum cortisol or ACTH stimulation test will be necessary to diagnose adrenal insufficiency due to Addison's disease. A 24hr urinary cortisol will not provide a definitive diagnosis for adrenal insufficiency, no matter how convenient it might be for someone at home.
    True, but it is not a definitive diagnosic tool, and the patient will still have to go through the steps in the algorithm below in order to get a yes/no answer as to whether they have any type of adrenal insufficiency.
    A 24hr urinary cortisol is not a starting place nor does it provide a definitive answer to whether one has any type of adrenal insufficiency.
    [​IMG]

    http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=C&unit_code=8546
    https://www.labcorp.com/test-menu/23246/cortisol-urinary-free
     
    Last edited: Apr 3, 2017

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