Life threateningly sick... what can I do?? (aldosterone, adrenaline, food allergies, etc)

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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..
 
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I had some very similar symptoms when I was developing what I'm pretty sure was adrenal insufficiency (maybe autoimmune origin). My cortisol levels were dropping....still within the range of 'normal' (I think they were 9 at the lowest), but I had serious symptoms, like weight loss, nerve pain, joint pain, diarrhea. This all coincided with having mono, but getting on adrenal cortex extract (basically supplementary cortisol) was a life saver. I later used helminthic therapy to help heal my adrenals. I don't feel completely recovered yet, but my cortisol levels are back to normal and I gained much needed weight (and generally don't have the adrenal insufficiency symptoms anymore).

What are your cortisol levels?

*I'm not a medical professional. Just sharing my experiences.
 
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I had some very similar symptoms when I was developing what I'm pretty sure was adrenal insufficiency (maybe autoimmune origin). My cortisol levels were dropping....still within the range of 'normal' (I think they were 9 at the lowest), but I had serious symptoms, like weight loss, nerve pain, joint pain, diarrhea. This all coincided with having mono, but getting on adrenal cortex extract (basically supplementary cortisol) was a life saver. I later used helminthic therapy to help heal my adrenals. I don't feel completely recovered yet, but my cortisol levels are back to normal and I gained much needed weight (and generally don't have the adrenal insufficiency symptoms anymore).

What are your cortisol levels?

*I'm not a medical professional. Just sharing my experiences.
Unfortunately I am far beyond the point where adrenal cortex extracts work anymore... have been for roughly 7 years. At this point it just wreaks more havoc on my body, much in the ways that Dr Lam and other Adrenal experts say happens in severe cases. The problem being that it's not just my Adrenals that are out of whack, I have a whole slew of other issues that make it VERY delicate and very difficult to recover from. Particularly neurotransmitter imbalances... which the hormones play a huge role in.

I've never heard of helminthic therpay before though, could you tell me more, and how it helped you? I'm gonna do some research, but it'd be nice to hear some first hand about it.

As far as my cortisol levels go... they've been normal for most of my life, up until recently... about 7 or 8 months ago I did a saliva cortisol test and they were quite high in the morning and at night, and normal at the other 2 mid points of the day. I've been told by both an ND and a MD that I either already have adrenal hypofunction based on the curve, or they are already well on their way out, and will burn out completely very soon (again this was 8 or so months ago, so imagine how I feel now...). Haven't had it tested since then, unfortunately... because I can't get anyone to order the tests. But I am positive they're a great deal worse, and willing to bet I'm bordering on or already at adrenal insufficiency already.

I don't even think seeing an Endo would help me at this point either, especially if they only give me one hormone instead of a full blown hormone replacement therapy... I feel like my only chance is in seeing someone who is a true Adrenal expert, who can work some kind of miracle... someone who can do all the testing I need, and give consistent care and nutrition.
 

kangaSue

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I don't suppose they checked your urine osmolality if you didn't have hyponatremia?
What is your uric acid level like? If low, SIADH (Syndrome of inappropriate antidiuretic hormone) is a sodium wasting condition that can cause some of your symptoms but I don't know if it can be a transient thing. SIADH can be induced by a number of meds though.
 
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I don't suppose they checked your urine osmolality if you didn't have hyponatremia?
What is your uric acid level like? If low, SIADH (Syndrome of inappropriate antidiuretic hormone) is a sodium wasting condition that can cause some of your symptoms but I don't know if it can be a transient thing. SIADH can be induced by a number of meds though.
My uric acid levels are usually high tbh, but I have this issue even when they're not. I have all the symptoms of someone with low aldosterone levels though, so does my entire family (except my mom, but her side has the thyroid problems).

And all I keep reading about is how it can cause all of the issues I'm dealing with now, particularly that of issues with dealing with physical stress overloads where there shouldn't be a problem, considering it's called the "secondary stress hormone" next to cortisol. But of course... doctors don't want to hear what you've read about, even if it's truly what's going on.

She didn't do an osmolality test though, she basically did a handful of basic tests and a basic urinalysis for UTI, and then told me I was fine. "Maybe" there's a problem with what you're describing, but "probably not" from a kidney standpoint... even though she didn't really look into it at all. I'm still trying to determine what the heck my Aldosterone test results mean... to me a level of '1' seems low enough to be an issue, or warrant further testing, no matter what kind of doctor she is. Especially since it single handedly explains every single health issue I've had since I was 3 years old.

All of this despite me being in excruciating back pain, and having dark super concentrated urine that I burns like battery acid and comes out maybe a few squirts twice a day... I drink plenty of water too, and there's no swelling or water retention - which makes absolutely no sense at all.
 

kangaSue

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@DFams One other thing I know of that can cause secondary adrenal insufficiency and can account formany of your other symptoms is renal Nutcracker Syndrome (left renal vein stenosis).

The symptoms of this vary wildly between individual patients and I have this which causes me mostly severe GI dysmotility symptoms, but I know plenty of people who have severe back and leg pains with it and it can include breathing pains, headaches, brain fog, severe fatigue, urination problems and frequent UTI's that don't produce a positive culture and dysautonomia.

Most have Pelvic Congestion Syndrome (about 80%) with this. One doctor has coined the phrase "Midline congestion syndrome" when left renal vein compression is rerouting blood flow to the spinal tract which can then cause the symptoms from head to foot.

In the majority of Nutcracker cases, kidney function tests are normal other than maybe having blood or protein in the urine and about 20% of cases don't have either of these.

There's no Nutcracker Syndrome research for adults into the Addisonian-like symptoms that can occur as has been found in some children.
https://www.ncbi.nlm.nih.gov/pubmed/22573421
 

bertiedog

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@DFams Wouldn't any of the doctors that you have seen give you a trial of Fludrocortisone to see if that will help you to feel better? It's like a magic drug for me when my sodium levels go off due to too much sweating. I also loose salt and my body cannot correct this if its very hot weather. Also although I really benefit from just half a tab, my need isn't really reflected in a sodium blood test. That will tend to look ok, never high but maybe in the middle of the range.

I believe this is something to do with the way our cells are working, i.e. the sodium is in the blood but not getting into the cell but don't think many doctors understand this.

I have adrenal insufficiency and have to take 6 mg Prednisolone daily. The fact that you have had high readings this past year on a 24 hour cortisol saliva test shows that it cannot be an issue with the part of the adrenals that control your blood sugar production but it doesn't rule out issues with aldosterone because that is produced by a separate part of the adrenals. (This is all from memory so I hope I have got it correct but if not I am sure someone will correct me).

Also I wonder if you could be a carrier for the salt wasting enzyme, 21 OH adrenal hyperplasia? I actually am a carrier for this gene which seems a bit of a co-incidence that I waste salt and run into big problems in hot weather or if I get diahorea which happened to me recently. I was very weak for many days experiencing things like dizziness and weakness and generally feeling very unwell. The heart gets involved too when we are like this as we get lots of adrenaline as you know. It's a horrible situation.

I have had 2 adrenal crisis many years ago when I came off my steroid for a period when it looked like my adrenals had picked up a bit and could cope but it only lasted a few months until I had uncontrollable vomitting and diahorea and ended up passing out on the toilet and once on the floor couldn't really come too until I was given some hydrocortisone. Everything was black and I was very lucky I wasn't on my own or I think I could have died as I had no energy to move at all. It was very scary and I knew from that time I would have to be on steroids for life.

Do you experience periods of blackness and dizziness? I used to get those for a few years until I was diagnosed which wasn't by an NHS Endo but by a private Endo who went by my symptoms as well as other tests.

Hope you can find some help with this. As you probably know the thyroid is also extremely important but if the adrenals are off then it won't function as it should.

Pam
 

outdamnspot

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I'm sorry. I've been experiencing very similar symptoms, and it's completely terrifying, so I empathize but can't give much helpful advice. I am concerned about dying too, at the ripe old age of 32. A few weeks ago, I started to experience the exact same shortness-of-breath you describe -- my body has been running on adrenaline 24/7 since my CFS became severe, and it was like it couldn't even produce that anymore. I've found certain things like a Keto diet, time-release Vitamin C etc. helpful for 'damage control' but have not made any progress since I got very sick.
 

Hip

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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,
Have you been tested for POTS, or performed the POTS self test at home (details of how to do this self test in the POTS section of this document)? See the POTS symptoms in the violet box on this webpage. Quite similar to yours.

POTS might in part explain your salt cravings, as salt can ameliorate POTS. Lots of ME/CFS patients have POTS.



I have been sick for roughly 20 years now. Primarily with adrenal fatigue
If I were sick for 20 years, I would not want to pin that down on a non-medically recognized and dubious diagnosis like adrenal fatigue, which is a condition which may not even exist (I am not saying it doesn't, but there's no evidence for it).

Has any doctor looked at your overall symptoms and given you a diagnosis such as ME/CFS (not the symptoms that you are recently manifesting, but your symptoms in the 20 years prior to this recent episode)?

You might like to read the CDC Fukuda criteria for ME/CFS, or the more precise Canadian consensus criteria (see the 7 boxed criteria on page 2), or the nice and simple IOM criteria, and check whether your symptoms match those ME/CFS diagnostic criteria.
 
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Unfortunately I am far beyond the point where adrenal cortex extracts work anymore... have been for roughly 7 years. At this point it just wreaks more havoc on my body, much in the ways that Dr Lam and other Adrenal experts say happens in severe cases. The problem being that it's not just my Adrenals that are out of whack, I have a whole slew of other issues that make it VERY delicate and very difficult to recover from. Particularly neurotransmitter imbalances... which the hormones play a huge role in.

I've never heard of helminthic therpay before though, could you tell me more, and how it helped you? I'm gonna do some research, but it'd be nice to hear some first hand about it.

As far as my cortisol levels go... they've been normal for most of my life, up until recently... about 7 or 8 months ago I did a saliva cortisol test and they were quite high in the morning and at night, and normal at the other 2 mid points of the day. I've been told by both an ND and a MD that I either already have adrenal hypofunction based on the curve, or they are already well on their way out, and will burn out completely very soon (again this was 8 or so months ago, so imagine how I feel now...). Haven't had it tested since then, unfortunately... because I can't get anyone to order the tests. But I am positive they're a great deal worse, and willing to bet I'm bordering on or already at adrenal insufficiency already.

I don't even think seeing an Endo would help me at this point either, especially if they only give me one hormone instead of a full blown hormone replacement therapy... I feel like my only chance is in seeing someone who is a true Adrenal expert, who can work some kind of miracle... someone who can do all the testing I need, and give consistent care and nutrition.

Helminthic therapy entails inoculating oneself with helminths, which are basically a kind of parasitic worm. The therapy is based on the hygiene hypothesis/biome depletion theory which essentially states that the absence of certain organisms that we coevolved with is causing abnormal immune responses. The therapy is generally used to treat allergic and autoimmune disease. I specifically used human hookworm, necator americanus, and it has lessened allergies and improved adrenal function. However, the therapy has not improved my ME/CFS symptoms (post exertional malaise), and may have even made the fatigue somewhat worse. For more information on helminthic therapy, this website has an incredible amount of good information: https://helminthictherapywiki.org/wiki/index.php/Helminthic_Therapy_Wiki

There is also a facebook group called Helminthic Therapy Support with many members who are very knowledgeable and experienced.
 
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Sorry to hear about everything you have going on. I share a number of these symptoms and know how intolerable they can be. How is your blood pressure? Have you had a 24-hour urine test done? If not, you might want to consider a 24-hour fractioned catecholamine test, which if off would warrant a referral to an endocrine.

I know in my experience I've shown several abnormalities on 24-hour tests that appear normal on spot blood tests (cortisol, normetanephrine, and creatinine were high on 24 hour vs normal on blood)
 
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Sorry to hear about everything you have going on. I share a number of these symptoms and know how intolerable they can be. How is your blood pressure? Have you had a 24-hour urine test done? If not, you might want to consider a 24-hour fractioned catecholamine test, which if off would warrant a referral to an endocrine.

I know in my experience I've shown several abnormalities on 24-hour tests that appear normal on spot blood tests (cortisol, normetanephrine, and creatinine were high on 24 hour vs normal on blood)
What would abnormalities on the 24-hour fractioned catecholamine test indicate?
 
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What would abnormalities on the 24-hour fractioned catecholamine test indicate?
From my understanding, it depends on the abnormality but generally it indicates an adrenal issue that would warrant investigation by an endocrinologist. My results were suggestive of a possible pheochromocytoma, which after two imaging tests has since been ruled out.

I am now not any closer to a true diagnosis but this has been one of the only lab results that has shown out of range other than high blood pressure and low vitamin d.
 
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Where do you live in case anyone has any Endo referrals?
I live in connecticut, but like I said I would need to see someone who can work a miracle for me at this point. Not sure if an Endo would even help there, but maybe if I can get on Aldosterone at least it'd be a start.

Bartter syndrome?
I'm not familiar with that one, but from what I've read it's very clearly more of an aldosterone deficiency (especially since my test results show that to be true), but there certainly is a great deal more going on with me than just that. But my doctors are doing the bare minimum to look into everything, and just want someone else to do all the work... keep pawning me off on different docs/specialist, and they then in turn do the exact same thing.

I'm sorry. I've been experiencing very similar symptoms, and it's completely terrifying, so I empathize but can't give much helpful advice. I am concerned about dying too, at the ripe old age of 32. A few weeks ago, I started to experience the exact same shortness-of-breath you describe -- my body has been running on adrenaline 24/7 since my CFS became severe, and it was like it couldn't even produce that anymore. I've found certain things like a Keto diet, time-release Vitamin C etc. helpful for 'damage control' but have not made any progress since I got very sick.
This sounds EXACTLY like what I went through and am going through... constant state of fight-or-flight ever since puberty... always shaky, nervous, jumpy, even being bumped into or had my name called out my heart felt like it would explode out of my chest, with this terrible anxiety in the pit of my stomach. And now... somehow that's all mostly gone, replaced by these symptoms. I've also started passing out and everything is getting worse too fast for me to keep up with. It's becoming difficult for me to even get on here and make replies... even though I need to, in attempt to save my damn life.

I can't even handle any form of vitamin C though, nor have I ever been able to... since one of my major issues is gut/GI problems, and very poor digestion/low tolerance of most things that are supposed to be "helpful".

Let me ask you though... have you ever tried anything like Ashwagandha, or Rhodiola, and had any success? Everyone keeps suggesting these, but for me when I take them they just make me SO MUCH WORSE... more shaky/nervous, extremely jittery, and the worst stomach pain ever...

Sorry to hear about everything you have going on. I share a number of these symptoms and know how intolerable they can be. How is your blood pressure? Have you had a 24-hour urine test done? If not, you might want to consider a 24-hour fractioned catecholamine test, which if off would warrant a referral to an endocrine.

I know in my experience I've shown several abnormalities on 24-hour tests that appear normal on spot blood tests (cortisol, normetanephrine, and creatinine were high on 24 hour vs normal on blood)
Honestly... I THOUGHT my kidney doctor was ordering a 24 hour urine test to test my salt levels and catecholamines, especially since we talked about low adrenal function and aldosterone levels as a possibility... but apparently she just wanted to see how much I was urinating so she could tell me "it's within the normal range" (like she was proving it to me or something, for some reason, which is beyond me since I never argued that or about anything...) and that was the entire reason for the test... She's said repeatedly too, that it sounds like it "could" be a salt wasting issue, but absolutely refused for some reason to look into that further...

Even the ER supervising doctor told me I should be doing a 24 hour urine test to test exactly those things (salt/catecholamines), but once again... my kidney doctor did the absolute bare minimum and then sent me off to urologists instead - because she simply does not want to do the work to find out what's really going on, just like every single doctor I've seen my. entire. life.

And now here I am, feeling like death is right around the corner for me, and the only one suffering for my doctors' laziness, incompetence, and lack of knowledge, is me.
 
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@DFams Wouldn't any of the doctors that you have seen give you a trial of Fludrocortisone to see if that will help you to feel better?
God I wish my doctors were intelligent enough to do something like that... If I sound bitter, it's because I am. Extremely bitter beyond words at this point. It sounds like everyone else in the entire world's doctors have a pretty good handle on their cases, but somehow out of the DOZENS of doctors I've seen, every. last. one of them. has been completely irresponsible, lazy, incompetent, or lacking intelligence... they all REFUSE to do workups (despite even 3 other doctors requesting/referring this to be done), and instead send me to someone else... usually a completely different type of specialist... despite all saying "you clearly have issues, many layers of issues, not in your head, definitely physical, a lot of GI/immune related, not simply IBS, not just fatigue, etc etc etc"

I can't even fathom for the life of me why something like a trial of Fludrocortisone from a doctor who HERSELF suggested it was a salt wasting issue, and wanted to test my Aldosterone levels to see the above results and somehow came to the conclusion that "all was well there"

It's like a magic drug for me when my sodium levels go off due to too much sweating. I also loose salt and my body cannot correct this if its very hot weather. Also although I really benefit from just half a tab, my need isn't really reflected in a sodium blood test. That will tend to look ok, never high but maybe in the middle of the range.

I believe this is something to do with the way our cells are working, i.e. the sodium is in the blood but not getting into the cell but don't think many doctors understand this.
YES, PRECISELY. This EXACTLY what I've always said and understood since I was a freaking teenager! I understood this over 15 years ago, why is it so damned hard for my doctors to understand now? Normal blood levels of sodium/potassium do not always reflect normal levels in the cellular fluid and lymphatics!! That's what the POINT of the 24 hour urine test was supposed to be for that my nephrologist made me think I was doing, but never actually ordered! Even the ER doctor said this exact same thing to me! "Sodium levels in the blood can be normal, but you're still wasting salt" and my mom who's a nurse saying "but you're TAKING so much extra salt with every meal, of course you're going to make up for whatever is lost, in your blood..."

The entire reason I ended up in the ER that day was because I didn't get any salt at all that day!!

I have adrenal insufficiency and have to take 6 mg Prednisolone daily. The fact that you have had high readings this past year on a 24 hour cortisol saliva test shows that it cannot be an issue with the part of the adrenals that control your blood sugar production but it doesn't rule out issues with aldosterone because that is produced by a separate part of the adrenals. (This is all from memory so I hope I have got it correct but if not I am sure someone will correct me).
Yes, that very much seems to be the case and always has been... Although two doctors now have told me that with what my levels of cortisol were at, and what the curve suggested, was that my adrenals were "on their way out" as in full blown insufficiency eventually (which seems to be where I'm at now)... or at the very least, very very low epinephrine, and lower aldosterone than ever... with possible "normal-ish" cortisol, or low here also, for all I know now.

Also I wonder if you could be a carrier for the salt wasting enzyme, 21 OH adrenal hyperplasia? I actually am a carrier for this gene which seems a bit of a co-incidence that I waste salt and run into big problems in hot weather or if I get diahorea which happened to me recently. I was very weak for many days experiencing things like dizziness and weakness and generally feeling very unwell. The heart gets involved too when we are like this as we get lots of adrenaline as you know. It's a horrible situation.
Well the biggest problem that I have is... how exactly do I get tested for these types of things? Like I said my doctors just don't do the work. And they refuse to do most tests that I ask, despite saying how insanely sick I am (even going as far as to say "I can take one look at you and tell you NEED a full workup done, but someone else has to do it...")

How do I get my doctor(s) to order tests like this? sigh

As well... for me my heart has been involved for a while, and adrenal has always been an issue as I've been "diagnosed" with a constant state of fight-or-flight... so for me I guess, the adrenaline was ALWAYS on... and now it's gone, hence my new concerning symptoms from lacking adrenaline... which I am at a complete loss at what to do about... since I don't know how an Endo even treats low adrenaline levels... especially in someone who SHOULD normally have HIGH adrenaline, in order to function correctly... what happens in that case...?

I have had 2 adrenal crisis many years ago when I came off my steroid for a period when it looked like my adrenals had picked up a bit and could cope but it only lasted a few months until I had uncontrollable vomitting and diahorea and ended up passing out on the toilet and once on the floor couldn't really come too until I was given some hydrocortisone. Everything was black and I was very lucky I wasn't on my own or I think I could have died as I had no energy to move at all. It was very scary and I knew from that time I would have to be on steroids for life.

Do you experience periods of blackness and dizziness? I used to get those for a few years until I was diagnosed which wasn't by an NHS Endo but by a private Endo who went by my symptoms as well as other tests.

Hope you can find some help with this. As you probably know the thyroid is also extremely important but if the adrenals are off then it won't function as it should.

Pam
I do get periods of dizziness and very dim vision, that's one of my biggest concerns... not even a week ago I passed out for the first time. It wasn't a full blown faint, but my head almost smashed into my computer desk before I realized what was happening. And ever since then I've felt like it was going to happen again, almost every day.

I just don't know what to do about all of this though... everyone keeps telling me these recent symptoms are "anxiety related" but syncope and presyncope are most definitely NOT caused by anxiety. And my mom who's a nurse said my trip to the ER, she'd never seen "hyperventilating" like that... that was something else entirely, and not just a panic attak. And once again, the ER supervising doc himself said it was more, hence our discussions about "salt wasting". But none of my other docs will go any further than "it's anxiety, just relax, just do yoga". I'm beyond my wits end here, and beyond my patience, it makes me want to scream.
 
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Have you been tested for POTS, or performed the POTS self test at home (details of how to do this self test in the POTS section of this document)? See the POTS symptoms in the violet box on this webpage. Quite similar to yours.

POTS might in part explain your salt cravings, as salt can ameliorate POTS. Lots of ME/CFS patients have POTS.
I have not been tested for it, I didn't even know something like this existed and my doctors have certainly never brought it up as a possibility... but I'll look into it and try the self test if it's something I can do.

However, getting my doctors to look into it is a whole nother story, as I've mentioned that they are just as incompetent and lazy as humanly possible. And refuse to take almost all suggestions from me despite saying I'm VERY clearly VERY sick.




If I were sick for 20 years, I would not want to pin that down on a non-medically recognized and dubious diagnosis like adrenal fatigue, which is a condition which may not even exist (I am not saying it doesn't, but there's no evidence for it).

Has any doctor looked at your overall symptoms and given you a diagnosis such as ME/CFS (not the symptoms that you are recently manifesting, but your symptoms in the 20 years prior to this recent episode)?

You might like to read the CDC Fukuda criteria for ME/CFS, or the more precise Canadian consensus criteria (see the 7 boxed criteria on page 2), or the nice and simple IOM criteria, and check whether your symptoms match those ME/CFS diagnostic criteria.
I mean, how can you even say that it may not even exist? But I'm not here to argue that point...

The point is that every symptom I've had my entire life (intense salt needs, terrible potassium intolerance, constant state of fight or flight, abnormal aldosterone, abnormal cortisol, excrutiating back pain where the adrenal glands are, and literally dozens possibly hundreds of other symptoms) all point to my adrenals. Many doctors have said it, almost none have ever done anything about it, until just recently... since I'm finally gonna get to see an Endo, but who knows if it's too late now.

As for looking at my overall symptoms... no doctor has really looked at my overall symptoms and given me ANY diagnosis EVER (except for IBS and then later saying it was more than that, but then refusing to look into it more). This is the problem I'm facing, and I'm not sure if it's just where I live, or if I am literally the single most unlucky individual to ever walk the earth.

Really don't know what I can do or say to any of these doctors, I've been through so many primary cares, and see so many second and third opinions... but almost all of the time they just look at what the first one had to say and agree, or do the same thing and say "man you're really sick... your blood work/tests are crazy, but oop... not gonna look into it any more, lets send you to 4 or 5 other specialists to do that. Then they do the same thing.
 

bertiedog

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Well the biggest problem that I have is... how exactly do I get tested for these types of things? Like I said my doctors just don't do the work. And they refuse to do most tests that I ask, despite saying how insanely sick I am (even going as far as to say "I can take one look at you and tell you NEED a full workup done, but someone else has to do it...")
I found out about me being a carrier for 21 Adrenal Hyperplasia gene was through 23andme which you can order yourself. You might have to run the results through something like Livewello though as I believe they have changed how they report stuff.

I live in the UK so its obviously very different from the US but I sincerely hope you can get a doctor to take your case seriously.

Pam
 

Hip

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I mean, how can you even say that it may not even exist?
Well for example, this review concluded that adrenal fatigue does not exist, in that no cortisol abnormalities could be found in patients who had the symptoms of adrenal fatigue.

Now personally I remain open-minded about whether there might be a distinct condition of adrenal fatigue (and it's interesting that echovirus, one of the viruses linked to ME/CFS, can infect the adrenal glands), but I would suggest you also search for alternative diagnoses for you symptoms, in case you have some other treatable illness, and not just end your search on the adrenal fatigue diagnosis given by an alternative medicine practitioner, which as I say, may or may not exist as an illness.

POTS (postural orthostatic tachycardia syndrome) is one such alternative diagnosis. You can perform an accurate self diagnosis for POTS in you own home in less than 10 minutes, by doing the active standing test (sometimes also called the poor man's tilt table test). If you have POTS, you will often feel worse on standing up, or standing for some time.

POTS often involves low plasma aldosterone levels, 1 and people with low aldosterone have a craving for salt. POTS patients are sometimes treated with Florinef, an aldosterone analogue, which helps the kidneys retain more sodium. I tried Florinef myself for my own POTS, at doses of 0.1 mg daily. If you do try Florinef, be aware that when you want to stop, you have to taper off slowly.


POTS is one of three orthostatic intolerance (IO) conditions found in ME/CFS. Orthostatic intolerance means symptom that appear on standing. The other two are neurally mediated hypotension (NMH), which is also called neurally mediated syncope or neurocardiogenic syncope, and orthostatic hypotension. Both involve a drop of blood pressure on standing.

You may have had these, at least in the past, since you say:
I USED to get low blood pressure ALL THE TIME, along with dim vision upon standing,
POTS though does not involve low blood pressure, but does involve increased heart rate on standing.



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?
According to this lab test for aldosterone, the reference range varies depending on whether the test was taken with the patient lying down or standing. And also aldosterone levels will vary depending on sodium intake. So it look like it's quite hard to get a meaningful reading in such tests.
 
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