I APOLOGIZE FOR THE SIZE OF THIS THREAD, BUT I REALLY REALLY NEED HELP... PLEASE BARE WITH ME.
I have been sick for roughly 20 years now. Primarily with adrenal fatigue (only diagnosed by NDs, 3 of them so far) and severe GI/digestive issues. It's gotten to the point where it's so bad that I am positively terrified for my life, and do not know what to do anymore. I've already tried everything under the sun, every diet, supplement, etc - stimulative things never helped, only made things worse - and the only things that have helped, were neurotransmitter rebalancing (gaba/glutamine, etc mostly for my GI issues, but eventually drained my adrenals worse, particularly because of my uncontrollable food allergies).
Over the past few months I've developed symptoms of "adrenal crisis": constant nausea, vomiting often (mostly in the middle of the night), tremors throughout the day, severe back pain (pinpointed exactly where the kidneys are), very infrequent urination that burns like crazy (used to be very frequent, years ago) severe lower back pain, pain in legs and arms, shortness of breath - which is probably my most concerning symptom by far, almost seizure-like shaking whenever i wake up - be it morning, or a nap, or even just from nodding off for 5 minutes, dimming vision, absolutely nonexistent memory, positively debilitating fatigue, excruciating throat pain where thyroid is, to the point where some days I'm bed ridden for almost the entire day. Can't even walk anymore without feeling like I'm going to pass out or have some kind of lung attack.
In fact, just 2 weeks ago I had to be rushed to the hospital from some kind of attack. At first the doctors told me it was a panic attack... but after doing some blood work and listening to my symptoms, the supervising ER doctor came to the conclusion it was something else. "Sodium levels dropped too low for a bit possibly" he said, even though my blood electrolytes were fine - many things on the blood tests were not fine though. Then he mentioned salt wasting to me.
And just like what he said - most prominent symptom I've had, by far, my entire life... is a CONSTANT need for large amounts of sodium. With physical stress/pains, and fatigue, and headaches, and all kinds of health problems if I don't get it. Along with the absolute worst intolerance to potassium foods ever... doesn't even have to be a high potassium food, can just contain a moderate amount and wreaks havoc on me... I also get this very salty saliva, sometimes for hours or all day, often it will be like ocean water in my mouth, and usually when my body is very cold when it shouldn't be - as if my body is just completely unable to metabolize and utilize properly both sodium and potassium.
Everyone keeps telling me though, that I'm just "too stressed, have anxiety, worrying because of my other problems, etc etc" - but it is so very clearly something else. I can be 100% destressed (I'm very good at it, after living a life of "constant fight-or-flight" as some doctors have diagnosed me with), not worrying at all, and be on a completely positive wavelength as far as my state of mind... and I get this shortness of breath, heart palpitations, lethargy, etc. I'm not right now ofc lol, cus I'm writing this all out.
Recently I saw a kidney doctor too, who did some testing and found my parathyroid levels to be elevated, vitamin d levels low (cannot correct this no matter how much I take, sister has the same problem, whole family has thyroid problems too, and seemingly some kind of genetic aldosterone deficiency), and tested my Aldosterone and Renin levels at my request, and based on what I told her about my symptoms and sodium/potassium issues. She got the results back and told me they were "normal" but that absolutely freaking cannot be right. I have the results here, which I'll post...
Aldost SerPI-mCnc - 1 ng/dl
see note
*** Unable to flag abnormal result(s), please refer to reference range(s) below:
Adult Reference Ranges for Aldosterone, LC/MS/MS:
Upright 8:00 - 10:00 am < or = 28 ng/dl
Upright 4:00 - 6:00 pm < or = 21 ng/dl
Supine 8:00 - 10:00am 3 - 16 ng/dl
Renin Plas-cCnc 0.71
0.25-5.82 ng/mL/h <-- (normal range)
Aldost/Renin SerPI-Rto 1.4
0.9-28.9 Ratio <-- (normal range)
Now, first of all... the tests were not done properly, because this was done at 11:30am, and I never did any lying down version of the test either. No one discussed any of this with me, no one told me I needed to go at any specific time or times, and no one has given me a "low range", all the reason why it says "unable to flag abnormal results". My doctor is telling me the results were "normal" but is she going by the fact that nothing was flagged, or the fact that ONE aldosterone out of a, I guess, 0-28 range... isn't considered LOW?? How is ONE aldosterone out of 28 NOT LOW?? Especially with all my complaints about desperately needing salt, bad kidney pains, fluid balance problems (in my GI as well), symptoms specifically related to the Adrenal glands and particularly Aldosterone...
She said "you could have a salt wasting problem, but all your other labs are fine, so probably not" (my electrolytes again, which btw... I've been doing every freaking thing in my power, my entire life to make sure my electrolytes, and everything else stay normal so I DON'T end up in the damned hospital!!). She then refused to do further testing to find out, and instead referred me to a urologist. Literally exactly what I've dealt with hundreds of times, my entire life.
The need for sodium though has gotten to the point where any kind of salt that I use is like crack cocaine, and I'm a full blown addict. I can't get enough, it tastes better than any food I've ever had in my life, and it's actually AGONIZING if I don't get enough of it... my whole body get this strange sensation if I only eat a small amount, and even after I've had way more than anyone ever should with one meal, I can be full... but still need to eat to get more salt. Every meal, of every day.
I have been trying to get in to see an Endo, FOR A DECADE. Every single time my adrenals or thyroid come up though, my primary cares do a simple basic cortisol, tsh, and/or electrolyte test, tell me they're fine, and send me to see some other type of doctor instead... I finally managed to get my current primary care to refer me to see one, because every other doctor I've seen has thrown their arms up in the air saying "there's clearly something VERY wrong with you, a lot of things, but we don't know what... except that it's probably not what YOU think it is. ::excruciatingly frustrated::
Anyway, not to get off on the biggest tangent ever... now that I do have a referal to see an Endo, I have to wait at least 3-4 months to even see them because they're all insanely backed up. They say it's possible to see them earlier if my doctor will do some more testing for me and see some issues - like an ultrasound of my thyroid, CT scan of my abdomen (for my adrenal glands I guess), newer cortisol, tsh, tri thyroid, or some other stuff... but he won't do it. Cus he never does. And I can't get anyone else to. I'm certain that if my thyroid or cortisol levels were checked right now they would be absolutely lower than normal.
I also can't keep vomiting all the time, shaking like crazy, feeling like my kidneys are going to implode, thyroid going to explode, pass out, or have these attacks that send me to the ER... And despite how positive I make my frame of mind or doing meditation etc, it is getting so very much worse on a daily basis, and I feel I have VERY little time left. I'm doing absolutely everything I can just to barely stay afloat, and it's not working anymore...
On top of which I'm allergic to every single food that I'm eating currently, because after 10 years of doing a very strict elimination diet (which worked the entire time) I eventually ran out of foods due to being too sick to manage it and avoid foods from becoming new allergies... something that no doctor, even any ND, has been able to help me with. My allergist just keeps telling me to "take my prednisone if it gets bad". It IS bad, and prednisone would probably put me in a coma at this point!! With how bad my reaction to it was the last time.
I'm only 33 years old, and I really don't want this to be the end of my life... I'm willing to do absolutely ANYTHING, even drive across the country (US) if I can see a doctor who can give me consistent, closely watched care, whether it be hormone therapy or something else (not even sure if hormones would work at this point)... and can do constant testing... and actually gives a ****. I'm out of options though and I need something FAST. I cant wait til august/september to MAYBE get something out of these Endos, cus I honestly and truly don't think I have even half that long.
The questions I have... after this giant wall of text, are as follows...
1) Most importantly... is an Aldosterone level of 1, considered low? How exactly do they determine what the low amount is if it ranges from 0-28?? Where is the low number in the range, and how do all the people who are on Florinef even getting diagnosed?
2) Can I have salt wasting problems that are causing all of these issues that I mentioned, and still have normal electrolyte levels in blood tests? The supervising doctor in the ER told me so, but my Nephrologist is telling me no...
And can I have low Aldosterone problems without having low blood pressure, etc? I USED to get low blood pressure ALL THE TIME, along with dim vision upon standing, migraines from potassium, and so on... and now, according to my recent Hair Mineral test, I'm extremely deficient in BOTH sodium and potassium, with lower sodium than potassium.
3) Can I have severe Hypofunctioning adrenals, with normal cortisol levels? Actually... they were abnormal on the one saliva test I did, but they were elevated in the morning and at night, normal during mid 2 points. My ND told me it seems paradoxical, but this can actually be a sign of hypofunction. However, it seems like it's every OTHER function of my adrenal glands that are out of whack... particularly aldosterone, epinephrine, and neurotransmitters. And I get the feeling my cortisol levels should also be much much higher than they are, for the physical stress load that I'm dealing with, especially with every meal giving me an allergic freaking reaction.
4) I know that shortness of breath, attacks that "seem like panic attacks but aren't" (even my mom is a nurse and said the breathing I had when I went to the ER was not like normal hyperventilating at all) - is related to Adrenaline/Epinephrine.
I've been told by many doctors that I'm in a "constant state of fight or flight" my entire life (isn't that reason enough to be able to see an Endo?? apparently not) - and it seems that I'm finally "burning out" of said Adrenaline/Epinephrine, and no matter what I do, what precursors for dopamine and epi i take, I cannot seem to stabilize this issue... What can I POSSIBLY do here?? Can't even get my doctors to test it!
5) I've tried places like Dr Lam, BHRTs, Naturopaths... and even my own ND, who has a tremendous reputation for saving lives, has said I absolutely NEED to see an Endo and get on hormones. But like I said, I'm going through absolute hell getting in to see them... and even the clinical staff, the woman who sets up the appointments and asks my doctor to do some tests and stuff, is giving me grief... keeps giving me an attitude, acting like I'm being pushy (I'm not), she keeps "forgetting" to talk to my doctor, putting bare minimum effort in despite clear cut and urgent symptoms, etc. So I haven't even gotten a chance to set up the appointment yet, until she does her job.
What else can I possibly do in the meantime, in general?? Are there any kinds of facilities with researches who are "adrenal/nutrition experts" like Dr lam or Dr Wilson, where I can go and even be a test subject or something? I would do this in a HEARTBEAT if I could get day to day care, testing, support. But that's clearly asking way too much... are there any facilities like this at all, that do Adrenal/Nutrition based consistent care? Even if I have to drive across country and pay thousands of dollars... I'm so desperate...
I would take absolutely any advice at this point, but I don't know what can even help me... I can't even handle the smallest amounts of my supplements and barely any food anymore... they all completely burn me out beyond belief or make me nauseous. What can I do? Really..
I have been sick for roughly 20 years now. Primarily with adrenal fatigue (only diagnosed by NDs, 3 of them so far) and severe GI/digestive issues. It's gotten to the point where it's so bad that I am positively terrified for my life, and do not know what to do anymore. I've already tried everything under the sun, every diet, supplement, etc - stimulative things never helped, only made things worse - and the only things that have helped, were neurotransmitter rebalancing (gaba/glutamine, etc mostly for my GI issues, but eventually drained my adrenals worse, particularly because of my uncontrollable food allergies).
Over the past few months I've developed symptoms of "adrenal crisis": constant nausea, vomiting often (mostly in the middle of the night), tremors throughout the day, severe back pain (pinpointed exactly where the kidneys are), very infrequent urination that burns like crazy (used to be very frequent, years ago) severe lower back pain, pain in legs and arms, shortness of breath - which is probably my most concerning symptom by far, almost seizure-like shaking whenever i wake up - be it morning, or a nap, or even just from nodding off for 5 minutes, dimming vision, absolutely nonexistent memory, positively debilitating fatigue, excruciating throat pain where thyroid is, to the point where some days I'm bed ridden for almost the entire day. Can't even walk anymore without feeling like I'm going to pass out or have some kind of lung attack.
In fact, just 2 weeks ago I had to be rushed to the hospital from some kind of attack. At first the doctors told me it was a panic attack... but after doing some blood work and listening to my symptoms, the supervising ER doctor came to the conclusion it was something else. "Sodium levels dropped too low for a bit possibly" he said, even though my blood electrolytes were fine - many things on the blood tests were not fine though. Then he mentioned salt wasting to me.
And just like what he said - most prominent symptom I've had, by far, my entire life... is a CONSTANT need for large amounts of sodium. With physical stress/pains, and fatigue, and headaches, and all kinds of health problems if I don't get it. Along with the absolute worst intolerance to potassium foods ever... doesn't even have to be a high potassium food, can just contain a moderate amount and wreaks havoc on me... I also get this very salty saliva, sometimes for hours or all day, often it will be like ocean water in my mouth, and usually when my body is very cold when it shouldn't be - as if my body is just completely unable to metabolize and utilize properly both sodium and potassium.
Everyone keeps telling me though, that I'm just "too stressed, have anxiety, worrying because of my other problems, etc etc" - but it is so very clearly something else. I can be 100% destressed (I'm very good at it, after living a life of "constant fight-or-flight" as some doctors have diagnosed me with), not worrying at all, and be on a completely positive wavelength as far as my state of mind... and I get this shortness of breath, heart palpitations, lethargy, etc. I'm not right now ofc lol, cus I'm writing this all out.
Recently I saw a kidney doctor too, who did some testing and found my parathyroid levels to be elevated, vitamin d levels low (cannot correct this no matter how much I take, sister has the same problem, whole family has thyroid problems too, and seemingly some kind of genetic aldosterone deficiency), and tested my Aldosterone and Renin levels at my request, and based on what I told her about my symptoms and sodium/potassium issues. She got the results back and told me they were "normal" but that absolutely freaking cannot be right. I have the results here, which I'll post...
Aldost SerPI-mCnc - 1 ng/dl
see note
*** Unable to flag abnormal result(s), please refer to reference range(s) below:
Adult Reference Ranges for Aldosterone, LC/MS/MS:
Upright 8:00 - 10:00 am < or = 28 ng/dl
Upright 4:00 - 6:00 pm < or = 21 ng/dl
Supine 8:00 - 10:00am 3 - 16 ng/dl
Renin Plas-cCnc 0.71
0.25-5.82 ng/mL/h <-- (normal range)
Aldost/Renin SerPI-Rto 1.4
0.9-28.9 Ratio <-- (normal range)
Now, first of all... the tests were not done properly, because this was done at 11:30am, and I never did any lying down version of the test either. No one discussed any of this with me, no one told me I needed to go at any specific time or times, and no one has given me a "low range", all the reason why it says "unable to flag abnormal results". My doctor is telling me the results were "normal" but is she going by the fact that nothing was flagged, or the fact that ONE aldosterone out of a, I guess, 0-28 range... isn't considered LOW?? How is ONE aldosterone out of 28 NOT LOW?? Especially with all my complaints about desperately needing salt, bad kidney pains, fluid balance problems (in my GI as well), symptoms specifically related to the Adrenal glands and particularly Aldosterone...
She said "you could have a salt wasting problem, but all your other labs are fine, so probably not" (my electrolytes again, which btw... I've been doing every freaking thing in my power, my entire life to make sure my electrolytes, and everything else stay normal so I DON'T end up in the damned hospital!!). She then refused to do further testing to find out, and instead referred me to a urologist. Literally exactly what I've dealt with hundreds of times, my entire life.
The need for sodium though has gotten to the point where any kind of salt that I use is like crack cocaine, and I'm a full blown addict. I can't get enough, it tastes better than any food I've ever had in my life, and it's actually AGONIZING if I don't get enough of it... my whole body get this strange sensation if I only eat a small amount, and even after I've had way more than anyone ever should with one meal, I can be full... but still need to eat to get more salt. Every meal, of every day.
I have been trying to get in to see an Endo, FOR A DECADE. Every single time my adrenals or thyroid come up though, my primary cares do a simple basic cortisol, tsh, and/or electrolyte test, tell me they're fine, and send me to see some other type of doctor instead... I finally managed to get my current primary care to refer me to see one, because every other doctor I've seen has thrown their arms up in the air saying "there's clearly something VERY wrong with you, a lot of things, but we don't know what... except that it's probably not what YOU think it is. ::excruciatingly frustrated::
Anyway, not to get off on the biggest tangent ever... now that I do have a referal to see an Endo, I have to wait at least 3-4 months to even see them because they're all insanely backed up. They say it's possible to see them earlier if my doctor will do some more testing for me and see some issues - like an ultrasound of my thyroid, CT scan of my abdomen (for my adrenal glands I guess), newer cortisol, tsh, tri thyroid, or some other stuff... but he won't do it. Cus he never does. And I can't get anyone else to. I'm certain that if my thyroid or cortisol levels were checked right now they would be absolutely lower than normal.
I also can't keep vomiting all the time, shaking like crazy, feeling like my kidneys are going to implode, thyroid going to explode, pass out, or have these attacks that send me to the ER... And despite how positive I make my frame of mind or doing meditation etc, it is getting so very much worse on a daily basis, and I feel I have VERY little time left. I'm doing absolutely everything I can just to barely stay afloat, and it's not working anymore...
On top of which I'm allergic to every single food that I'm eating currently, because after 10 years of doing a very strict elimination diet (which worked the entire time) I eventually ran out of foods due to being too sick to manage it and avoid foods from becoming new allergies... something that no doctor, even any ND, has been able to help me with. My allergist just keeps telling me to "take my prednisone if it gets bad". It IS bad, and prednisone would probably put me in a coma at this point!! With how bad my reaction to it was the last time.
I'm only 33 years old, and I really don't want this to be the end of my life... I'm willing to do absolutely ANYTHING, even drive across the country (US) if I can see a doctor who can give me consistent, closely watched care, whether it be hormone therapy or something else (not even sure if hormones would work at this point)... and can do constant testing... and actually gives a ****. I'm out of options though and I need something FAST. I cant wait til august/september to MAYBE get something out of these Endos, cus I honestly and truly don't think I have even half that long.
The questions I have... after this giant wall of text, are as follows...
1) Most importantly... is an Aldosterone level of 1, considered low? How exactly do they determine what the low amount is if it ranges from 0-28?? Where is the low number in the range, and how do all the people who are on Florinef even getting diagnosed?
2) Can I have salt wasting problems that are causing all of these issues that I mentioned, and still have normal electrolyte levels in blood tests? The supervising doctor in the ER told me so, but my Nephrologist is telling me no...
And can I have low Aldosterone problems without having low blood pressure, etc? I USED to get low blood pressure ALL THE TIME, along with dim vision upon standing, migraines from potassium, and so on... and now, according to my recent Hair Mineral test, I'm extremely deficient in BOTH sodium and potassium, with lower sodium than potassium.
3) Can I have severe Hypofunctioning adrenals, with normal cortisol levels? Actually... they were abnormal on the one saliva test I did, but they were elevated in the morning and at night, normal during mid 2 points. My ND told me it seems paradoxical, but this can actually be a sign of hypofunction. However, it seems like it's every OTHER function of my adrenal glands that are out of whack... particularly aldosterone, epinephrine, and neurotransmitters. And I get the feeling my cortisol levels should also be much much higher than they are, for the physical stress load that I'm dealing with, especially with every meal giving me an allergic freaking reaction.
4) I know that shortness of breath, attacks that "seem like panic attacks but aren't" (even my mom is a nurse and said the breathing I had when I went to the ER was not like normal hyperventilating at all) - is related to Adrenaline/Epinephrine.
I've been told by many doctors that I'm in a "constant state of fight or flight" my entire life (isn't that reason enough to be able to see an Endo?? apparently not) - and it seems that I'm finally "burning out" of said Adrenaline/Epinephrine, and no matter what I do, what precursors for dopamine and epi i take, I cannot seem to stabilize this issue... What can I POSSIBLY do here?? Can't even get my doctors to test it!
5) I've tried places like Dr Lam, BHRTs, Naturopaths... and even my own ND, who has a tremendous reputation for saving lives, has said I absolutely NEED to see an Endo and get on hormones. But like I said, I'm going through absolute hell getting in to see them... and even the clinical staff, the woman who sets up the appointments and asks my doctor to do some tests and stuff, is giving me grief... keeps giving me an attitude, acting like I'm being pushy (I'm not), she keeps "forgetting" to talk to my doctor, putting bare minimum effort in despite clear cut and urgent symptoms, etc. So I haven't even gotten a chance to set up the appointment yet, until she does her job.
What else can I possibly do in the meantime, in general?? Are there any kinds of facilities with researches who are "adrenal/nutrition experts" like Dr lam or Dr Wilson, where I can go and even be a test subject or something? I would do this in a HEARTBEAT if I could get day to day care, testing, support. But that's clearly asking way too much... are there any facilities like this at all, that do Adrenal/Nutrition based consistent care? Even if I have to drive across country and pay thousands of dollars... I'm so desperate...
I would take absolutely any advice at this point, but I don't know what can even help me... I can't even handle the smallest amounts of my supplements and barely any food anymore... they all completely burn me out beyond belief or make me nauseous. What can I do? Really..
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