adrenal fatigue

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  • parfia
    parfia Posts: 184 Member
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    aylajane wrote: »
    Just curious for those who are saying adrenal fatigue is not real... I am just starting to do some research on this after having been to an endocrinologist who said that while my cortisol is low, my testosterone is way low, d is low and b12 is super high - nothing is outside "normal" range except testosterone, but that "rarely causes issues in women". This is a very highly regarded endo. I actually could not stay awake while he was talking to me. But his final result for me was "not endocrine related" and sent me back to my primary doc.

    Someone suggested I look up adrenal fatigue and I almost fell over - EVERY SINGLE SYMPTOM on their list is why I went to my primary doc in the first place.

    In my limited research so far, I see two very different camps - it is real but unrecognized, or - like here - it is made up and you should go see a "real" doc.

    So I am a little lost on what to do now. I am excited that my symptoms correspond with other peoples, but i am not a "snake oil" type person and I firmly believe there must be a cause (diet, perimenopause, etc). I have tried the doctor route and am now desperate for help or something to try - but I am on my own as doctors say I am fine.

    Do you all have any other insight on this? I.e. if people who seek these naturopaths are suffering from a condition that is not real, but all have very common collection of symptoms, what is the "other" diagnosis that is being missed? Other options to look into that would mimic this?

    My thought right now is simply to try what I can that doesnt require paying someone and I already know is healthy - Ie. following an elimination type diet, using the AFS guidelines on what to eat. Getting more and better sleep, etc. But I dont want to spend months on this and still have same issue because there was an actual medical cause everyone missed.

    Any insight is appreciated.

    But the endocrinologist did NOT diagnose you with adrenal fatigue, right?

    The only way you actually have such as thing is if you have a primary diagnosis of Addison's, panhypopituitarism, etc. A real endocrinologist would be treating you for these things. You would be taking daily injections, tons of pills, and perhaps steroids.

    The rest is woo.

    As someone with a real, serious, life-threatening set of endocrine disorders, I really don't appreciate people who make up their own diagnoses.

    ^This, my 3 year old daughter is under Endocrinology for a series of hypoglycemic attacks in which her sugars hit 1.4 and she was unresponsive, if you really are suffering from true symptoms of adrenal fatigue, go and see a doctor but please do not self diagnose because you think that your symptoms fit with a googled list!!
  • aylajane
    aylajane Posts: 979 Member
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    parfia wrote: »
    aylajane wrote: »
    Just curious for those who are saying adrenal fatigue is not real... I am just starting to do some research on this after having been to an endocrinologist who said that while my cortisol is low, my testosterone is way low, d is low and b12 is super high - nothing is outside "normal" range except testosterone, but that "rarely causes issues in women". This is a very highly regarded endo. I actually could not stay awake while he was talking to me. But his final result for me was "not endocrine related" and sent me back to my primary doc.

    Someone suggested I look up adrenal fatigue and I almost fell over - EVERY SINGLE SYMPTOM on their list is why I went to my primary doc in the first place.

    In my limited research so far, I see two very different camps - it is real but unrecognized, or - like here - it is made up and you should go see a "real" doc.

    So I am a little lost on what to do now. I am excited that my symptoms correspond with other peoples, but i am not a "snake oil" type person and I firmly believe there must be a cause (diet, perimenopause, etc). I have tried the doctor route and am now desperate for help or something to try - but I am on my own as doctors say I am fine.

    Do you all have any other insight on this? I.e. if people who seek these naturopaths are suffering from a condition that is not real, but all have very common collection of symptoms, what is the "other" diagnosis that is being missed? Other options to look into that would mimic this?

    My thought right now is simply to try what I can that doesnt require paying someone and I already know is healthy - Ie. following an elimination type diet, using the AFS guidelines on what to eat. Getting more and better sleep, etc. But I dont want to spend months on this and still have same issue because there was an actual medical cause everyone missed.

    Any insight is appreciated.

    But the endocrinologist did NOT diagnose you with adrenal fatigue, right?

    The only way you actually have such as thing is if you have a primary diagnosis of Addison's, panhypopituitarism, etc. A real endocrinologist would be treating you for these things. You would be taking daily injections, tons of pills, and perhaps steroids.

    The rest is woo.

    As someone with a real, serious, life-threatening set of endocrine disorders, I really don't appreciate people who make up their own diagnoses.

    ^This, my 3 year old daughter is under Endocrinology for a series of hypoglycemic attacks in which her sugars hit 1.4 and she was unresponsive, if you really are suffering from true symptoms of adrenal fatigue, go and see a doctor but please do not self diagnose because you think that your symptoms fit with a googled list!!

    Once again, no one is self diagnosing. Just seeking relief. Suffering is suffering, just because it is not on the same level of someone else, please dont belittle it. I found this thread simply because after several doctors told me nothing was wrong with me, someone suggested "adrenal fatigue" . I had never heard of so I started researching it . I was surprised at how spot on the symptoms listed were with what I had experienced. Usually after researching something, I email my doctor questions like "do you think it could be this" and she writes back "no your tests did not indicate that". Basically doctors are telling me I am "fine" but i am not "fine" and rather than sit back and accept that this is my new "life", I am seeking out symptom relief.

    I have no doubt people suffer life threatening illnesses related to endocrine, cardio, nervous and every other system in the body. That does not mean that those who "suffer" from non-life threatening illnesses of your particular variety are not "suffering".

    So because I am not literally dying of this, I should not try to find relief? I started with my doctor, I followed all directions and did all tests and referrals. They tell me I am "fine". So I should just accept that so that I dont risk "self-diagnosing" myself by googling? If you were in pain every day and unable to continue on your normal life and your doctor said there was nothing they could do for you, you would not google or research or trial and error anything on your own?! Seriously?
  • evileen99
    evileen99 Posts: 1,564 Member
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    Since you seem to be medically oriented I would suggest looking for a functional medicine doctor (they are MD's) in your area. *Most* people do not feel well if their hormones are not in the upper 1/3 of the range the AMA uses and it sounds like yours are quite low. A functional medicine doctor will treat based on how you feel, not just what your numbers say. Low testosterone will most certainly cause a woman to not feel well. Testosterone is only one of the hormones that helps to provide energy. Like I said, you probably need to look for a functional medicine doctor.


    Functional medicine isn't a real specialty. In fact, it's been criticized for continuing to push disproven treatments. The institute for functional medicine was founded by a "nutritionist" and to become certified as one all you have to do is take a 10 hour online course.

    https://www.sciencebasedmedicine.org/fuctional-medicine-fm-what-is-it/

    It's woo with a better sounding name.
  • aylajane
    aylajane Posts: 979 Member
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    evileen99 wrote: »
    Since you seem to be medically oriented I would suggest looking for a functional medicine doctor (they are MD's) in your area. *Most* people do not feel well if their hormones are not in the upper 1/3 of the range the AMA uses and it sounds like yours are quite low. A functional medicine doctor will treat based on how you feel, not just what your numbers say. Low testosterone will most certainly cause a woman to not feel well. Testosterone is only one of the hormones that helps to provide energy. Like I said, you probably need to look for a functional medicine doctor.


    Functional medicine isn't a real specialty. In fact, it's been criticized for continuing to push disproven treatments. The institute for functional medicine was founded by a "nutritionist" and to become certified as one all you have to do is take a 10 hour online course.

    https://www.sciencebasedmedicine.org/fuctional-medicine-fm-what-is-it/

    It's woo with a better sounding name.

    Lovely, so still nothing. Basically if your "real" doctor(s) doesnt have any ideas, you just live with it? Assume you are imagining it? Just being lazy? I have never been "lazy" in my life - I am the ultimate overachiever. This is truly killing me.

    I certainly dont want to chase down the wrong paths into unproven or skeptical "medicine", but if there is no "cause" (that they can find anyway), I think treating symptoms is about the best I can do. uNtil whatever it is is bad "enough" to show on their tests.

    Kind of like hearing a knocking sound in your car engine and ignoring it until it blows a hole out the side. So much better to catch things early...

    Sigh - thanks all for the discussion.
  • Colorscheme
    Colorscheme Posts: 1,179 Member
    edited March 2016
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    aylajane wrote: »
    parfia wrote: »
    aylajane wrote: »
    Just curious for those who are saying adrenal fatigue is not real... I am just starting to do some research on this after having been to an endocrinologist who said that while my cortisol is low, my testosterone is way low, d is low and b12 is super high - nothing is outside "normal" range except testosterone, but that "rarely causes issues in women". This is a very highly regarded endo. I actually could not stay awake while he was talking to me. But his final result for me was "not endocrine related" and sent me back to my primary doc.

    Someone suggested I look up adrenal fatigue and I almost fell over - EVERY SINGLE SYMPTOM on their list is why I went to my primary doc in the first place.

    In my limited research so far, I see two very different camps - it is real but unrecognized, or - like here - it is made up and you should go see a "real" doc.

    So I am a little lost on what to do now. I am excited that my symptoms correspond with other peoples, but i am not a "snake oil" type person and I firmly believe there must be a cause (diet, perimenopause, etc). I have tried the doctor route and am now desperate for help or something to try - but I am on my own as doctors say I am fine.

    Do you all have any other insight on this? I.e. if people who seek these naturopaths are suffering from a condition that is not real, but all have very common collection of symptoms, what is the "other" diagnosis that is being missed? Other options to look into that would mimic this?

    My thought right now is simply to try what I can that doesnt require paying someone and I already know is healthy - Ie. following an elimination type diet, using the AFS guidelines on what to eat. Getting more and better sleep, etc. But I dont want to spend months on this and still have same issue because there was an actual medical cause everyone missed.

    Any insight is appreciated.

    But the endocrinologist did NOT diagnose you with adrenal fatigue, right?

    The only way you actually have such as thing is if you have a primary diagnosis of Addison's, panhypopituitarism, etc. A real endocrinologist would be treating you for these things. You would be taking daily injections, tons of pills, and perhaps steroids.

    The rest is woo.

    As someone with a real, serious, life-threatening set of endocrine disorders, I really don't appreciate people who make up their own diagnoses.

    ^This, my 3 year old daughter is under Endocrinology for a series of hypoglycemic attacks in which her sugars hit 1.4 and she was unresponsive, if you really are suffering from true symptoms of adrenal fatigue, go and see a doctor but please do not self diagnose because you think that your symptoms fit with a googled list!!

    Once again, no one is self diagnosing. Just seeking relief. Suffering is suffering, just because it is not on the same level of someone else, please dont belittle it. I found this thread simply because after several doctors told me nothing was wrong with me, someone suggested "adrenal fatigue" . I had never heard of so I started researching it . I was surprised at how spot on the symptoms listed were with what I had experienced. Usually after researching something, I email my doctor questions like "do you think it could be this" and she writes back "no your tests did not indicate that". Basically doctors are telling me I am "fine" but i am not "fine" and rather than sit back and accept that this is my new "life", I am seeking out symptom relief.

    I have no doubt people suffer life threatening illnesses related to endocrine, cardio, nervous and every other system in the body. That does not mean that those who "suffer" from non-life threatening illnesses of your particular variety are not "suffering".

    So because I am not literally dying of this, I should not try to find relief? I started with my doctor, I followed all directions and did all tests and referrals. They tell me I am "fine". So I should just accept that so that I dont risk "self-diagnosing" myself by googling? If you were in pain every day and unable to continue on your normal life and your doctor said there was nothing they could do for you, you would not google or research or trial and error anything on your own?! Seriously?

    The problem is that symptoms are so vague it could be caused by anything from autimmune disorders, CFS, etc. But endocrinologists DO agree that adrenal fatigue is not real. Does that mean you're fine? no. It just means you have something else.

    In 2008, I started feeling tired, having headaches, high blood pressure etc. I was in my early 20's and I knew it wasn't normal to feel so tired, but my family thought it was all in my head. After some testing and labs, I was diagnosed with POTS. I had a tilt test to prove it. Since then, I've been diagnosed with fibromyalgia and AVNRT which resulted in ablation. Now I am on permanent disability and will never get better.

    Now as far as testing went, my bloods for electrolytes, thyroid etc was good. But my catecholamine levels are severely abnormal, so sometimes it takes specialized blood testing to reveal something. You'd think extra adrenaline would make me feel like I have a ton of energy but it's quite the opposite.
  • Cherimoose
    Cherimoose Posts: 5,210 Member
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    @aylajane You might see an Internist for it. They tend to better diagnosticians than general doctors.

    It does sound like it might be related to the sleeve surgery. How long ago was that?

    Do you take any medication?
  • caffeinatedcami
    caffeinatedcami Posts: 168 Member
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    aylajane wrote: »
    evileen99 wrote: »
    Since you seem to be medically oriented I would suggest looking for a functional medicine doctor (they are MD's) in your area. *Most* people do not feel well if their hormones are not in the upper 1/3 of the range the AMA uses and it sounds like yours are quite low. A functional medicine doctor will treat based on how you feel, not just what your numbers say. Low testosterone will most certainly cause a woman to not feel well. Testosterone is only one of the hormones that helps to provide energy. Like I said, you probably need to look for a functional medicine doctor.


    Functional medicine isn't a real specialty. In fact, it's been criticized for continuing to push disproven treatments. The institute for functional medicine was founded by a "nutritionist" and to become certified as one all you have to do is take a 10 hour online course.

    https://www.sciencebasedmedicine.org/fuctional-medicine-fm-what-is-it/

    It's woo with a better sounding name.

    Lovely, so still nothing. Basically if your "real" doctor(s) doesnt have any ideas, you just live with it? Assume you are imagining it? Just being lazy? I have never been "lazy" in my life - I am the ultimate overachiever. This is truly killing me.

    I certainly dont want to chase down the wrong paths into unproven or skeptical "medicine", but if there is no "cause" (that they can find anyway), I think treating symptoms is about the best I can do. uNtil whatever it is is bad "enough" to show on their tests.

    Kind of like hearing a knocking sound in your car engine and ignoring it until it blows a hole out the side. So much better to catch things early...

    Sigh - thanks all for the discussion.

    I really can sympathize with feeling awful and wanting a diagnosis. No one is calling you lazy or saying that you are imagining your symptoms. Your symptoms fit a variety of conditions and settling with a false diagnosis of Adrenal Fatigue could prevent you from finding the actual source of your symptoms (and the proper course of treatment). You should advocate for yourself and seek second opinions from doctors.

    That said, a lot of your symptoms could be caused by depression. Clinical depression is a real medical condition caused by an imbalance of neurotransmitters. It can cause extreme fatigue. I know it did for me and treatment helped. I am NOT saying you have depression. I am just explaining that mental health issues can cause physical symptoms. That doesn't make those symptoms any less real.
  • Sued0nim
    Sued0nim Posts: 17,456 Member
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    I just popped in to say that whilst I have to accept that adrenal fatigue does not exist, and do not believe that nutritionists offer anything but a placebo affect I have NO DOUBT at all that your symptoms are very real

    You're not mad

    You are just in that intensely vulnerable and frustrating place where you don't have a diagnosis, a working hypothesis or a treatment plan

    I do feel for you but I also admire your resilience and refusal to accept something that specialists have actually come out to refute

    Sorry I have no solutions
  • aylajane
    aylajane Posts: 979 Member
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    Cherimoose wrote: »
    @aylajane You might see an Internist for it. They tend to better diagnosticians than general doctors.

    It does sound like it might be related to the sleeve surgery. How long ago was that?

    Do you take any medication?

    Surgery was over 4 years ago. Until the past 6 months I was the picture of health, and other than D being low (has been especially in winter since before surgery) and B12 being super high (over 2 years went from 800 to 1200 to 2000+ with no supplementation), all my other micronutrients are fine (protein, C, A, etc.). I do believe my serum B12 is high because of not having the intrinsic factor in my stomach to metabolize it, so I am probably actually deficient - which is why I tried to have my doctor prescribe the B12 shots. She refused because the levels are too high and she thinks I am eating foods that will do that. She wouldnt consider testing my "active" levels or just giving me the shots as an experiment (since you cant really overdose). I did look into buying them on my own (vitamins do not require prescriptions) but the preferred form (methyl) is prohibitively expensive and the cheap version not nearly as effective. So I havent decided what to do there. In the meantime I am using B12 and D subliquals and sprays trying to avoid needing my stomach to do it.

    Its possible that the extra B12 and D just need more time to "help". The numbness in my hands and feet is significantly better than before I started, so I do think that was part of it. But it has not helped with energy or dizziness or some other symptoms.

    I do not take any medications or other vitamins. I have a hard time remembering the sublinguals now... lol.
  • aylajane
    aylajane Posts: 979 Member
    Options
    aylajane wrote: »
    evileen99 wrote: »
    Since you seem to be medically oriented I would suggest looking for a functional medicine doctor (they are MD's) in your area. *Most* people do not feel well if their hormones are not in the upper 1/3 of the range the AMA uses and it sounds like yours are quite low. A functional medicine doctor will treat based on how you feel, not just what your numbers say. Low testosterone will most certainly cause a woman to not feel well. Testosterone is only one of the hormones that helps to provide energy. Like I said, you probably need to look for a functional medicine doctor.


    Functional medicine isn't a real specialty. In fact, it's been criticized for continuing to push disproven treatments. The institute for functional medicine was founded by a "nutritionist" and to become certified as one all you have to do is take a 10 hour online course.

    https://www.sciencebasedmedicine.org/fuctional-medicine-fm-what-is-it/

    It's woo with a better sounding name.

    Lovely, so still nothing. Basically if your "real" doctor(s) doesnt have any ideas, you just live with it? Assume you are imagining it? Just being lazy? I have never been "lazy" in my life - I am the ultimate overachiever. This is truly killing me.

    I certainly dont want to chase down the wrong paths into unproven or skeptical "medicine", but if there is no "cause" (that they can find anyway), I think treating symptoms is about the best I can do. uNtil whatever it is is bad "enough" to show on their tests.

    Kind of like hearing a knocking sound in your car engine and ignoring it until it blows a hole out the side. So much better to catch things early...

    Sigh - thanks all for the discussion.

    I really can sympathize with feeling awful and wanting a diagnosis. No one is calling you lazy or saying that you are imagining your symptoms. Your symptoms fit a variety of conditions and settling with a false diagnosis of Adrenal Fatigue could prevent you from finding the actual source of your symptoms (and the proper course of treatment). You should advocate for yourself and seek second opinions from doctors.

    That said, a lot of your symptoms could be caused by depression. Clinical depression is a real medical condition caused by an imbalance of neurotransmitters. It can cause extreme fatigue. I know it did for me and treatment helped. I am NOT saying you have depression. I am just explaining that mental health issues can cause physical symptoms. That doesn't make those symptoms any less real.

    Well I definitely believe this as well... I have taken meds for depression in the past, but not for long. I found that regular daily exercise completely negates the need for it - I am almost euphoric when feeling physically good and active (after years of being overweight and tired). My issue here is more the cart and the horse syndrome - I definitely was not depressed when this started - my life is busy but better than it has been in a very long time. But after 4-6 months of steadily declining activity and feeling like I just need to try harder but being unable to, and no answers after many tests (and a lot of money on them), I am definitely not euphoric anymore. Not only can I not exercise like I want to, but I am frustrated and most days just do not feel good.

    I could take depression meds for mood, but since the depression is a result of my "condition" not a cause of it, I would rather fix the condition and let the mood restore itself when I can move again. I wont rule it out, but it seems very backwards right now.

    I thought about second opinions but it has cost me a lot of money for the first ones, and since everything is based on interpreting blood tests - I dont see that changing unless my test results change? If it is an objective judgment and not subjective interpretation, then more opinions from mainstream medicine probably are not going to vary much. I still have one appt with gyno coming up, and if nothing comes out of that I may have to reconsider that and make some really educated decisions on which second opinions might be worth pursuing.
  • aylajane
    aylajane Posts: 979 Member
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    rabbitjb wrote: »
    I just popped in to say that whilst I have to accept that adrenal fatigue does not exist, and do not believe that nutritionists offer anything but a placebo affect I have NO DOUBT at all that your symptoms are very real

    You're not mad

    You are just in that intensely vulnerable and frustrating place where you don't have a diagnosis, a working hypothesis or a treatment plan

    I do feel for you but I also admire your resilience and refusal to accept something that specialists have actually come out to refute

    Sorry I have no solutions


    Thank you :) I am a very logical person, and am trying hard to be objective. In the meantime, while waiting on another doc visit, I am doing some trial and error on "harmless" things like sleep, stress, diet. Things that do not hurt even if I was not in this position - basically things everyone could work on. Even if it doesnt fix everything, if it makes every day even a little more bearable it is certainly worth it.

    I have also found correlations in the past with certain food type ingredients - specifically certain artificial sweeteners - but only after months of trial and error and mapping things out. 10 years ago I was (mis) diagnosed with fibromyalgia. My doc was very quick to continually offer me that as a "name" for what I had. I guess he thought I wanted that somehow. All I wanted was to stop it. After a year of different fibro meds that did nothing for me, I was googling for just relief of specific symptoms when I came across a website of the side effects sucralose can cause and a light bulb came on... I evaluated my diet and realized I was WAY overdosing on it. I assumed it was a "free" food (this was back when it first came out, and I was not into moderation :) ). I cut it out completely and over the next 2-3 months all my symptoms disappeared and life was back to "normal". My doct or never asked about diet, and it didnt occur to me that any kind of "food" could cause something like that.

    Then after 10+ years of drinking a case of Diet Mtn Dew Code Red every day (remember I didnt believe in moderation :) ) I switched to tea for a month. And found that almost all my knee pain (I actually had a handicapped parking sticker from it, and dozens of shoes and orthotics and doc visits over many years) completely disappeared. Still not sure why or how that was caused by it, but I have done very specific tests to confirm it - it is only the Code Red kind, not the regular Diet Mtn Dew.

    And then I was drinking tea... it took me months to switch to stevia - I didnt like the taste, but I knew better than to use Sucralose again... And everyone said Stevia is "natural" so I thought it must be fine. I found a brand I could tolerate, drank it in my iced tea water bottle several times a day for a few months. Very gradually over those few months, I starting noticing I was getting dizzy a lot. I was hiking often, and several times I would get to the bottom of a big hill or across a few miles (all while drinking my trusty tea with stevia) and then nearly black out. I would stand there desperately trying to figure out how i was going to get home. I was seeing stars every day at work after lunch. Finally figured it out with a blood glucose meter experiment over a few days - stevia is great for diabetics because not only does it not raise blood sugar for most people, but in some people it actually lowers it. I am one of those. But I am not diabetic - my blood sugar is normally very low end (70-80 most of the time). During these "episodes" (not long after drinking my tea), it was dropping to 40-50. Eventually I figured out that I can have stevia IF it is mixed in something that has a little carbs to raise my blood sugar and counteract it, but for the most part I avoid it.

    So I firmly believe there is a cause for all this, but I have been trying to figure it out for months, and so far nothing other than a little dehydration - working on the water aspect now as well.

    But a little help for a doc for a direction would certainly help, and I dont want to spend months trying to figure it out if it turns out NOT to be something I am doing to myself unknowingly...

    Anyway, thanks for the discussion everyone - the ideas really do help, and I am reading every one with an open mind and making some notes so I have things to try and questions to ask the doc.