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Adrenal Fatigue, Suggestions Where to Turn?

Discussion in 'Hormones' started by lavonia, Dec 18, 2013.

  1. lavonia

    lavonia

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    Hello new friends. I was hoping I could post some information and you could share some of your wisdom.

    Firstly, I'm having trouble getting diagnosis and proper testing and I'm not sure what or where to go next. My CBC, blood counts, organs, and everything is pretty much normal, glucose, blood pressure. Thyroid tests have always come out normal. I ordered a diurnal cortisol test and the results are low in the morning. My vitamin D is also low and I can't get it to come up, even with supplements and sun.

    Test Name Result Units Range
    **Cortisol (saliva) 2.0 L ng/mL 3.7-9.5 (morning)**
    Cortisol (saliva) 2.0 ng/mL 1.2-3.0 (noon)
    Cortisol (saliva) 1.4 ng/mL 0.6-1.9 (evening)
    Cortisol (saliva) 0.8 ng/mL 0.4-1.0 (night)

    What does it mean to have low cortisol in the morning but normal in the day?

    I have many of the same symptoms as fellow CFSers. I can barely move all day and have trouble getting anything done. Symptoms flare with eating, I have trouble with a variety of foods. I seem to have no stress response. I basically get weak or pass out if I get upset. Weakness standing. I have severe atrophy in the legs, not sure due to tumor (see below) or fatigue. However, I seem to not be able to stand when I feel weak or tired. It ceases when I am feeling better. I might have one good day a week where I'm fairly active, otherwise I loose weeks at a time to fatigue.

    Sun helps. Exercise does, but I'm so tired I can hardly get up in the first place. If I do and can stay on my feet for say 10 mins, it'll help the weakness for a couple hours. Again, it's nearly impossible to get moving in the first place and the atrophy doesn't help.

    I have a rare inter spinal tumor, it can't be cut out due to nerve inclusion. There is a cyst in the spinal cord too. When the surgeon went in and popped the cyst or relieved the spine pressure, the CFS symptoms nearly stopped. However, to keep the tumor from growing any more I underwent radiation, that's when the symptoms started back.

    Radiation was suggested to stop tumor growth, but the side effect has been severe fatigue (cyst pressure came back with radiation and caused a second cyst). I do NOT have the issues on corticosteroids. My energy is up and I move around okay. Weight drops, skin is clear and hair thick. I was fine while I was going through the radiation, but after the med drop I've have CFS symptoms since. I think there is a probability that the cyst pressure could compress the adrenal nerve and be causing issues.

    I'm not sure where to turn. My surgeon looks at my MRI only. If there's no tumor growth, he is disinterested in anything else. My GP and neurologist aren't equipped to deal with it. Does anyone have any suggestions as to some research or places to get started getting resolutions or answers? Best wishes!

    PS I'm in the Phoenix AZ area, if anyone knows a good doc there.
     
    Last edited: Dec 18, 2013
  2. Ema

    Ema Senior Member

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    Hi lavonia and welcome to the forum!

    You've got lots of things going on that complicate the picture (as you well know!).

    From first glance, your cortisol results are too low in the morning and then get to be too high at night. Ideally they should be at the top of the range in the morning and drop down in a nice curve shape to the bottom of the range at night.) It looks like your circadian rhythm is reversed which can happen and is a sign of HPA axis dysfunction.

    From this, it is likely that your adrenals are structurally sound but are not receiving the proper signals from the brain.

    Your symptoms sound like a more severe form of HPA axis dysregulation than your cortisol results suggest.

    What dose/type of steroids were you taking and for how long? How long had you been off the steroids when you did the saliva cortisol test?

    I sympathize with you on the difficulty of getting specialists to take a more holistic view. Have you tried going to a DO neurologist instead of an MD? They are fully licensed doctors as well but the type of medical school education is different and takes a more holistic approach than the MD. Sometimes people have better luck with them but it depends on the individual of course.
     
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Hey Ema what is a DO neurologist?
     
  4. lavonia

    lavonia

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    Thanks Ema. I had spinal surgery in March 2012, followed it up with radiation until the end of July. I was hopeful, felt good after surgery. Was on 4-5 mg of dexamethosone during radiation, biking 2 miles a day and feeling good but still had right leg weakness. He dropped steroid immediately after radiation, so I've been off the steroid for quite some time. I was waiting on stabilization and healling, but not all my blood work is normal and functioning. I'm back to the same old symptoms I had before surgery, only 3 or 4 times as worse.

    I feel like Cortef therapy might help. It might be an issue of getting some of the strain of the adrenals. However, I have no idea when it comes to dosing, and as someone in the forums mentioned, getting too little or too much can be problematic.

    I believe the adrenals are functioning, but stressed. Like you said, I think there's a disregulation issue. I think it could be caused by the cyst pressure (fluid pressure) in the spine. If so, I don't know if the pressure can be relieved without major surgery, but I guess my next step is to see what can be done.

    About the DO neurologist, no I haven't and I've been searching for someone who can combine practices. I do not like how western medicine does not value prevention and whole body health and I'm looking for someone who can bridge the gap. Will do some google searching and see what I can come up with. Thank you so much.
     
  5. Ema

    Ema Senior Member

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    http://www.osteopathic.org/OSTEOPATHIC-HEALTH/ABOUT-DOS/WHAT-IS-A-DO/Pages/default.aspx

    What is a DO?
    If you're like most people, you've been going to physicians ever since you were born, but you're unaware that some or all of them could have been osteopathic physicians, also known as DOs. You may not even be aware that there are two types of complete physicians in the United States—DOs and MDs.

    The fact is that both DOs and MDs are fully qualified physicians licensed to prescribe medication and perform surgery.

    DOs and MDs are Alike in Many Ways
    • Students entering both DO and MD medical colleges typically have already completed four-year bachelor's degrees with an emphasis on scientific courses.

    • Both DOs and MDs complete four years of basic medical education.

    • After medical school, both DOs and MDs obtain graduate medical education throughinternships, residencies and fellowships. This training lasts three to eight yearsand prepares DOs and MDs to practice a specialty.

    • Both DOs and MDs can choose to practice in any specialty of medicine—such as pediatrics, family medicine, psychiatry, surgery or ophthalmology.

    • DOs and MDs must pass comparable examinations to obtain state licenses.

    • DOs and MDs both practice in accredited and licensed health care facilities.

    • Together, DOs and MDs enhance the state of health care available in the U.S.
    While DOs and MDs have many things in common, osteopathic medicine is a parallel branch of American medicine with a distinct philosophy and approach to patient care. DOs can bring an extra dimension to your health care through their unique skills.

    The Osteopathic Approach
    For more than a century, osteopathic physicians have built a tradition of bringing health care to where it is needed most:

    • Approximately 60% of practicing osteopathic physicians practice in the primary care specialties of family medicine, general internal medicine, pediatrics, and obstetrics and gynecology.

    • Many DOs fill a critical need for physicians by practicing in rural and other medically underserved communities.
    In addition, these modern-day pioneers practice on the cutting edge of medicine. DOs combine today's medical technology with their ears to listen caringly to their patients, with their eyes to see their patients as whole persons, and with their hands to diagnose and treat patients for injury and illness.
     
    Beyond likes this.
  6. Ema

    Ema Senior Member

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    So you've been off steroids now since July? I truly don't think that's enough time to tell where your adrenals will end up. It's common to take a year or more to recover fully from being suppressed. If it were me, I wouldn't try for cortisol replacement to treat adrenal dysregulation until it had been at least a year.

    ETA I'm not sure I'm reading the timeline correctly...is it July 2012 or July 2013?

    The other thing that occurs to me is that dex reduces intracranial pressure somehow in a way that other steroids do not. It's possible that this was what was providing you with the beneficial effects by reducing the pressure of the tumor on your spinal cord.

    http://www.jci.org/articles/view/118927/files/pdf

    What do you mean by "not all my blood work is normal and functioning"?
     
  7. lavonia

    lavonia

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    Ema, I've been off of steroids since July 2012. I was aware it'd take time to stabilize, but now it's well over a year and a half. I am weakening and I've noticed the muscles affected are specifically those that affect the adrenals. The low back pain in the precise area that affects adrenals. Docs may chalk it up to tumor, but the tumor hasn't changed and I never had low back pain before, nor nearly the level of weakness. Weakness also follows stress patterns.

    With the pressure reduction, yes, it is something I'm considering. MRI has been stable and he sees no changes with tumor, I suspect its the fluid in the cord. It's also something I'm going to bring up to my neurosurgeon next visit. Then I'm going to go for several other opinions, because I really feel like there's a chance my adrenal nerve is being pinched and causing some sort of problems. My weakness goes up and down and tends to follow a diurnal clock. So it could be one or a combination of both, I suppose.

    I found a DO Neuro here in Gilbert, AZ. So I think I'm going to see if I can get in to see him. Have an appointment setup Monday for my regular neurologist.

    Sorry, the blood work, I meant to say is I had some more coming in, so not sure if that was off. However, she said it was normal, will go into tomorrow to grab a copy, but tests included thyroid and cortisol which both came up normal at the time.

    With a waking cortisol number of two, is that enough to be causing the level of fatigue?
     
  8. Ema

    Ema Senior Member

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    Yes, get copies of the bloodwork because there is a distinct difference between "normal" and "optimal". I'd be curious to see what those look like.

    Your low cortisol in the AM is surely causing you fatigue but it may not be the only thing. I'm reluctant to offer supplement advice because you are not a "typical" sort of situation. But if you were typical, I would suggest you consider an adrenal glandular or licorice (if no high BP) in the AM and then an adaptogen and/or phosphatidylserine in the evening and at bedtime to try to coax your cortisol rhythm back to the circadian rhythm. You'll have to do some research and work with a good doctor to see what might work best for you.

    If it were me, I would also make sure to have good amounts of all the standard vits but especially Vit C and a good B complex along with some supplemental methyl B12. Zinc may also be important for you.

    Do anti-inflammatory drugs do anything to relieve the pressure?
     
  9. lavonia

    lavonia

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    Thank you, that will help me get started for sure.

    I do believe anti-inflams help. The steroid helped the most. I felt the most "normal" on it though was definitely getting too much at night at the time. I'd been on a high dose of ibuprofen, 1800 mgs for a year after the steroid drop. I felt like it was the only thing that helped for a bit. Was afraid it'd been hurting my ability to make prostaglandins, so I cut it. I'm probably overall weaker now, but more up and down. So it's hard to say for sure.

    Nuero suggested Tramadol, so I'm on 100 mgs of that, 50mg at night and 50mg in the morning. Afraid it could be affecting me, though I know reducing it would stress my body and I can't afford. I read one study of adrenal weakness in tramadol, but it was the only one I could find.
    Tram was good at first, but I think my adrenals quickly weakened and now it might be causing touble.
    I seem to have trouble with most everything (meds). Assuming anything that stresses my adrenals is making me weaker, so I avoid it for the most part. They've tried me on the standard rounds from Nuerotonin, Lyrica, etc. Then naturals like the glandulars, vitamin c, b, etc. No relief. My diet is mostly vegetable and some fruits, nuts, some fish and tofu. I don't really have any room to not get the best nuitrition.

    I'm not sure where to go, whether to push for Cortef or try ibuprofen at night or what to do. I've got a bottle of dexamethosone, .05mgs from last year. I'm tempted to use the conversions from Teitelbaums book and try a low dose in the morning and at noon and see what happens. (Using a cortef to dex conversion). Then talk to doc monday if steroid helps and see about switching to cortef. See what it is that is helping and weather it's just the adrenals or possibly a cord pressure issue.
    I'm not sure what to do, sitting on the fence about it. Will probably wait and see doc.

    Took a large dose of D, as my GP suggested. I did not realize D and cortisol fight for the same receptors, believe that is what has caused this severe of a flare today/yesterday. Legs are buckling completely with my walker and low back pain is presenting, in the pelvic area related to adrenal weakness.

    Thank you again for reading all of this. I honestly didn't put it together about the adrenals until a couple weeks ago and ordered tests. I have so much to learn and so much ground to cover.
     
  10. Ema

    Ema Senior Member

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    I would personally want to have more testing before starting back on steroids, specifically an AM cortisol and an ACTH stim test. You might need the low dose stim test as well if you are presenting as more secondary (brain problem vs adrenals problem) as it is somewhat better at catching this. These tests may still be inconclusive as they often are, but at least you will have had them done and not be on steroids years later wishing that you had tested but unable to get off steroids to do so at that time.

    If it is indeed the dex reducing the edema, you won't get those same benefits from Cortef. So there is also that to consider. Also keep in mind that patient experience has shown us that the dex conversion chart is typically too low. Most of us feel that .25 mg of dex is approx equivalent to 10-15 HC. The conversion chart doesn't seem to take into account the extremely long half life.

    In general, many people who take dex for AI find that dosing at bedtime works well because it takes 6-7 hours to peak so that coincides nicely with wake up. Some may find an additional morning dose necessary as well. I personally took a combination of dex at night and HC during the day and that worked really well for me as a balance. Multiple dosing isn't usually required with dex because the half life is so long.

    I have to admit, I'm a little flummoxed about a couple of things you've written. I'm not sure what "adrenal nerve" you are referring to exactly. I do know that obviously the adrenals are enervated by nerve plexuses but I've never really thought about their function being reduced due to physical compression since the adrenals work by hormone diffusion and not nerve transmission. I don't have anything to offer here unfortunately because it is just not something I am familiar with at all. I just wonder if the nerve was compressed and the adrenals weren't being enervated, wouldn't the adrenals not produce much at all, rather than being too low and then too high? That seems typically to be a brain signal problem rather than a structural problem. But maybe it is possible.

    Also, I'm confused about why the Vit D would affect your cortisol. I know there are studies showing that excess steroid downregulates the VDR but I've not seen where the opposite is true. I'd like to see the studies here to learn more if possible because I'm always interested in Vit D and how it affects AI.
     
  11. lavonia

    lavonia

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    I want to read over a bit more and reply. Wanted to post this for you, the nerve chart of the spinal cord. I'm not sure how the adrenal nerve works in relation to spinal column, will have to study it. However, I know the other corresponding areas that have pressure are where I have problems as well:

    http://cnx.org/content/m46582/latest/?collection=col11496/latest

    So my tumor stops at the T10, but the cyst starts right there and goes up between the shoulder blades. I was thinking it might be possible to be presenting problems from the pressure of the cyst. I can ask my neuro when I go back to explain more about what that adrenal nerve does precisely. When he did surgery, he went in and opened the spinal column at 4 vertebre (T10-L2). Nothing was removed, just enough tissue to biopsy. However after surgery my fatigue symptoms abated and I got a good bit of feeling back in the legs. So I believe some nerve pressure was relieved perhaps from cyst pressure being relieved or possibly for other reasons I just don't understand. Radiation brought back a lot of pressure, cyst returning and one small additional cyst in addition.

    Dex immediately relieves symptoms, even in small doses. Say 1/2 of a .5 pill makes a huge difference. I'm not sure why or what is going on. At this point fatigue is so bad I am having trouble getting to doctor in first place to get the tests. So I'm not sure how to handle it. I think Dex and Cortef probably needs to be explored, if the dex relieves symptoms but cortef doesn't at same dose, I wonder if I should consider a pressure issue. So far it's the only thing to help the problem and as bad as the fatigue has been, don't know that I have a lot to lose.
     
  12. lavonia

    lavonia

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    Blood Labs are all within the last week and month:
    Cortisol (saliva): http://lavoniamorris.com/Personal/cortisol.jpg
    Blood counts 1: http://lavoniamorris.com/Personal/blood_counts1.jpg
    Blood counts 2: http://lavoniamorris.com/Personal/blood_counts2.jpg
    Blood counts 3 (thyroid/cortisol): http://lavoniamorris.com/Personal/blood_counts3.jpg

    I specifically asked my GP to run all hormone related tests, I'm disappointed she didn't run additional tests like DHEAS. The blood counts are all in the morning, before eating or drinking. Tests about 8:30 to 9 am. My cortisol stabilized even in the morning but is so low on waking. Not sure what that means. Have had B12 run before, it always shows normal. Iron too. The Vit D has been consistently low, even with supplementation of 2000 iu daily and sun exposure daily (30 min in phoenix).

    I could order the additional tests from ZRT but I'm not sure what is reliable to be tested, so I'd have to check.

    Overall symptoms: Crippling fatigue (usually worse in the mornings, can't move until 1 or 2 pm at all), weakness, weakness when standing (bp had been normal until i added more salt, now is running to high side), feels like blood sugar drops all of a sudden (again sugar tests have all been normal), weakness in adrenal specific legs and back pain in left pelvis region, salt cravings, swelling of hands at night, low back pain in the night, inability to tolerate most foods or get energy from a meal, no stress response (inability to handle stress or cope with it, pass out or fall asleep to cope with high stress). With sleep, I pass out about 10, I fall asleep as soon as I hit the bed. Have to wake up to pee, but fall back asleep until 7:30 or so. Wake up exhausted. Standing and short exercise bouts help, 10 mins or so, but it's hard for me to get moving.
    These are nonspecific to tumor, as they were gone until after radiation. I do have pain as well specific to legs that could be causing added stress to the body. Done quite a bit of nutrition study, diet is balanced and healthy (though my caloric intake is low, 800-1000 max; can't tolerate more).
     
  13. lavonia

    lavonia

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    Dear Ema, I would like to thank you for all your information. It helped me get moving toward the right direction.

    Doc found that my prolactin is running high. There is no way I can be pregnant. I'm going in for a pituitary MRI Wed. Will try to update. Think they may be looking for tumor.
     
  14. Soundthealarm21

    Soundthealarm21 Senior Member

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    I know of a good doctor in Tucson if that is an option.

    I just got my salivary cortisol test back and have the same results as you. Low in the morning and normal the rest of the day.
     
  15. xks201

    xks201 Senior Member

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    You need to be put on HC...
     
  16. lavonia

    lavonia

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    What is HC? :)

    MRI is clear, no pituitary Tumor. I started Cabergoline (dopamine agonist) recently. Will have to wait longer before I can comment on that. I am having fluid problems at night, much more urine than I should have, some swellings in the hands. My pain level is high, with low dopamine it's been hard to control. I suspect pain level itself could be causing more imbalance as symptoms have risen as pain has risen. I know something is off at night but I guess i need to do more research on how the body and hormones at night.

    Have D deficiency still as well, and Iron, but supplementing those.
     

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