Discussions By Condition: I cannot get a diagnosis.

cortisol insufficiancy?? adrenal dsyfunction??

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: taniaaust1
  • March 1, 2008
  • 03:35 AM

Seeing i know that CFS people (Ive got CFS) in studies have shown to have low morning cortisol levels, causing some of us to have more morning tiredness, (a symptom i used to have, worst tiredness in mornings, real hard to like wake up and I wouldnt come good till lunch time or just after).

So I asked my doctor to check my cortisol levels. He thou didnt listen to me properly and got me to do a 24 hr urine cortisol test (rather than just the morning one) so i wasnt expecting an abnormal reading, as I'd read that the 24 hr urine test..isnt enough to pick up the cortisol issue..being only morning which is affected so hence morning testing is usually done).

Anyway.. being a 24 hr test with all the urine from that period mixed up .. my 24 hr cortisol reading is only 46 nmol/L instead of in the normal range of 50-350 nmol/L! (so i wonder just how low mine is dropping at times.. no wonder im struggling to deal with any stress at all.. cortisol is meant to help the body cope with stress).

Im under a ton of stress (thinking i may just drop dead due to my abnormal completely wacked out BP stuff going on, im getting quite scared cause of my medical stuff.. had a near passout in bed the other night which woke me up and that is scaring me as i've never nearly passed out in my sleep before.. (on the occassions Ive actually passed out, Ive been able to put it down to something eg stayed in heat too long, stood for too long, did too much etc). Due to all the severe symptoms now, im feeling like Im going to be one of those rare people, who the chronic fatigue syndrome (or CFIDS) actually kills.

I also have almost depression right now. I feel like im in deep sh*t as my body systems seem to all be malfunctioning and doctors can only put it down to the CFS and my systems malfunctioning (ANS etc) cause of it..thou really have no idea why)..
One would kind of expect my cortisol to be going high at times (depressed people have higher cortisol)..cortisol is meant to increase in response to stress.. so im shocked it's so low.

What does this reading indicate?? (my doctor said thou my reading is abnormal, he dont understand at all what this means). Does it mean I have adrenal insufficiancy? and if so.. should this be treated????

Im a little concerned that it could be the start of Addison's disease now developing in me which ive read is slowly progressive... as i researched and saw that in the few signs of addisons, are low sodium and low glucose.
In the past ive had out of the normal ranges/abnormal tests.. come back both low in both those areas (only just out of the normal ranges thou, but the whole thing is seeming almost too coincidental)..

I havent been on the Marshels Protocol at all. (an experiemental treatment for CFS which many are now trying.. but Ive heard a few CFS people say it's lead them to getting Addison's disease).

Should this low abnormal cortisol be followed up? or thou being out of the normal range.. it's not low enough to really worry about?????

Im just really feeling confused about what to do right now. Ive spoken to a couple of other CFS people and they told me that their GPs just ended up dimissing their abnormal cortisol results..due to not knowing what it all meant.

Would the sympathetic nervous system dysfunction i have which is causing my BP to widely swing.. could that also be affecting my adrenals?????

Does anyone here know about any of this stuff?
thanks..

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14 Replies:

  • This is from Mosby's Manual of Diagnsotic and Laboratory tests, 2nd ed, pp 863-4:Things that can interfere with the 24-hour urine cortisol test include:-pregnancy-physical and emotional stress can elevate it-drugs that can lower it: dexamethasone; ethacrynic acid; ketoconazole; and thiazides...So it doesn't really sound like you have any of these...Here are things that would lead to decreased levels (also from Mosby's, including the explanations in parentheses):-Adrenal Hyperplasia (congenital absence of important enzymes in the synthesis of cortisol prevents adequate serum levels... and then low urine levels)-Addison's Disease (As a result of hypofunctioning of the adrenal glands, cortisol levels drop)-Hypopituitarism (ACTH is not produced by the pituitary gland that is destroyed by disease, neoplasm, or ischemia. The adrenal gland is not stimulated to produce cortisol)-Hypothyroidism (Normal cortisol levels are not required to maintain the reduced metabolic rate in patients with hypothyroidism)There may be more reasons than the four listed in this book, but at least it's a start. It really sounds like you should be referred to an endocrinologist who can figure out the low cortisol for you. Or maybe they can explain how it appears in CFS patients.Keep us posted.Best Wishes!
    Anonymous 42789 Replies Flag this Response
  • i also have these symptoms you mentioned in your post.will you please give me any kind of suggestion to rule out the disease.does it also cause weight gain???plz reply
    Anonymous 42789 Replies Flag this Response
  • This is from Mosby's Manual of Diagnsotic and Laboratory tests, 2nd ed, pp 863-4: Things that can interfere with the 24-hour urine cortisol test include:-pregnancy-physical and emotional stress can elevate it-drugs that can lower it: dexamethasone; ethacrynic acid; ketoconazole; and thiazides... So it doesn't really sound like you have any of these... Here are things that would lead to decreased levels (also from Mosby's, including the explanations in parentheses):-Adrenal Hyperplasia (congenital absence of important enzymes in the synthesis of cortisol prevents adequate serum levels... and then low urine levels)-Addison's Disease (As a result of hypofunctioning of the adrenal glands, cortisol levels drop)-Hypopituitarism (ACTH is not produced by the pituitary gland that is destroyed by disease, neoplasm, or ischemia. The adrenal gland is not stimulated to produce cortisol)-Hypothyroidism (Normal cortisol levels are not required to maintain the reduced metabolic rate in patients with hypothyroidism) There may be more reasons than the four listed in this book, but at least it's a start. It really sounds like you should be referred to an endocrinologist who can figure out the low cortisol for you. Or maybe they can explain how it appears in CFS patients. Keep us posted.Best Wishes! pretend like i just posted this comment. because i agree with this and i think elke is right
    LymeTime 65 Replies Flag this Response
  • I have the same symptoms when not taking enough Hydrocortisone. It is worth checking into. Find the best Endocronologist you can that believes in you.Teresa
    TeresaC 41 Replies Flag this Response
  • Have you had any more possible seizures?Some say, people with CFS develop adrenal fatigue. just google the two. also wondering if you were on the Innerhealth powder?
    TerryG 120 Replies Flag this Response
  • Terry..no i havent had any more possible seizures.. Those occur in response to things eg when i exercise etc. My CFS specialist, who i saw yesterday is going to redo a whole heap of blood and urine tests.. including my adrenaline one. Apparently if things are going wrong there adrenaline wise, by what he said, that could cause seizure when i get active if it spikes then... eg like over dose on it. That spiking could also explain my recent severe mood swinging. Nods yeah.. i have previously heard that many people in the natural health fields diagose CFSers with adrenal issues eg adrenal burnout... but in the past i just thought that was probably just crap..and not being based on scientific testing. But that does now seem to be the actual case. No i havent taken the innerhealth powder.. but in the past have been on so many different supplements (which im meant to take, but arent currently taking as im sick of all pills). elke..thanks for that info. Im not pregnant..nor currently on any drugs so that just looks like it leaves the other things there. On further research (following your post etc), Ive found out that CFSers usually have pituitary gland problems going on which lead to adrenal problems.. so i guess this mystery is now solved. I still dont know what on earth is meant to be done about it thou. The specialist is having me redo the 24 hr urine cortisol test..but this time having me being active while on doing it to see what then happens (to see if me being active will affect my cortisol). Also as i didnt drink much when i did it, he doesnt know if that could affect test results. (my fluid output for the 24 hrs was only 520 ml .. due to me not having any thirst sensation any more (many of my body sensations are messed up)..so i often forget to drink... it's not that which has caused me to pass out on occassions thou.. as ive passed out on days when ive been carefully monitoring my fluids). Thanks everyone for the posts. blaze said If you think about it, chronic fatigue and fibromyalgia (fibrous muscle pain) are merely symptoms anyway with just a fancy name. "chronic fatigue" ISNT the same problem as "chronic fatigue syndrome"! They are two different medical things. Blaze.. is there anywhere online about cortisol deficiency (which is related to CFS), being a normal symptom of lymes??? Im curious about why you are suggesting lyme.. in regards to the cortisol symptom.
    taniaaust1 2267 Replies Flag this Response
  • I'd be interested to know how your cortisol test goes.
    TerryG 120 Replies Flag this Response
  • If your cortisol is low then it really does sound like your Adrenals. Have you considered that maybe you don't have CFS but actually Adrenal Insufficiency. A lot of doctors refuse to accept this as a diagnose only believing in Addisons disease - this is when over 80% of your Adrenal Glands are no longer working. So what's wrong with you if 60% of your Adrenal Glands don't work - according to the doctors you are perfectly healthy then. It did read an article comparing this to not diagnosing heart disease until after someone has a heart attack and ignoring all the signs and symptoms leading up to it. You should consult a good endocrinologist as soon as you can for more comprehensive testing.
    Larkenn 20 Replies Flag this Response
  • If your cortisol is low then it really does sound like your Adrenals. Have you considered that maybe you don't have CFS but actually Adrenal Insufficiency. A lot of doctors refuse to accept this as a diagnose only believing in Addisons disease - this is when over 80% of your Adrenal Glands are no longer working. So what's wrong with you if 60% of your Adrenal Glands don't work - according to the doctors you are perfectly healthy then. It did read an article comparing this to not diagnosing heart disease until after someone has a heart attack and ignoring all the signs and symptoms leading up to it. You should consult a good endocrinologist as soon as you can for more comprehensive testing. Nods.. thanks everyone. I just now need to get one of my doctors to agree to send me to an endocrinologist. (since this thread.. ive developed more obviously hormonal issues, this time more with my menstrational cycle including scary gushing of bleeding and now im bleeding when it isnt even my period)...................... The second cortisol test when i was drinking a good amount of fluid.. and also exercised that day (which then threw me into pain most of the day i was taking my urine sample for the cortisol testing :( .. which obviously due to much stress that day..one would expect cortisol to go up). Was 51 (so this time just within the normal range). Thing is I cant be expected to exercise daily to the point Im hurting all day, completely maxed out on my stress level.. just to have cortisol level just entering into the normal range.
    taniaaust1 2267 Replies Flag this Response
  • I don't think you're supposed to get yourself stressed out for the test. I was told to do very little the day before the test and stay nice and relaxed. This gives a clear result of what your cortisol level is. The more stressed you are the higher it rises so you might test low normal but you are really low. The saliva test is far more accurate - you test yourself 4 times during the day and the results are supposed to be clearer than with the blood or urine test. I'm trying to get my doctor to refer to an endocrinologist aswell. I tested very low normal (normal range for blood is 5-23). I tested 6.6 so she says that my result is in the normal range. But I've read that anything thats low normal needs to be treated too considering my adrenals are making less than 1/3 of the cortisol I need to get through the day. I'm going to push her for that referral, I can be very persuasive. If she won't give it to me then I'll go somewhere else. Don't you just hate doctors and their egos. If I'm right about my cortisol levels then she has to admit being wrong about her 'stress induced IBS' diagnosis and she's not gonna do that without a fight. I feel I'm fighting the doctors as much as fighting this mystery illness. Anyway enough of my rant, I hope you have some luck with your referral.
    Larkenn 20 Replies Flag this Response
  • I don't think you're supposed to get yourself stressed out for the test. I was told to do very little the day before the test and stay nice and relaxed. This gives a clear result of what your cortisol level is. The more stressed you are the higher it rises so you might test low normal but you are really low. The saliva test is far more accurate - you test yourself 4 times during the day and the results are supposed to be clearer than with the blood or urine test. I'm trying to get my doctor to refer to an endocrinologist aswell. I tested very low normal (normal range for blood is 5-23). I tested 6.6 so she says that my result is in the normal range. But I've read that anything thats low normal needs to be treated too considering my adrenals are making less than 1/3 of the cortisol I need to get through the day. I'm going to push her for that referral, I can be very persuasive. If she won't give it to me then I'll go somewhere else. Don't you just hate doctors and their egos. If I'm right about my cortisol levels then she has to admit being wrong about her 'stress induced IBS' diagnosis and she's not gonna do that without a fight. I feel I'm fighting the doctors as much as fighting this mystery illness. Anyway enough of my rant, I hope you have some luck with your referral. If normally done tests (which are done the right way) came back in the "NORMAL range" .. i personaly wouldnt worry about. Normal ranges have been set for a reason..as they are usually normal (representing no issue). Labs too can have different normal ranges with various tests as some labs may be more sensitive with their tests or be done a little differently than other labs (so it's always important to check out what is "normal range" for the lab due to labs varying). Ive been concernedd as my tests are not even coming in at that normal range at all (even when my life is usually stressful).. but outside of the normal range.. hence below normal. and yes.. I dont think it was correct that my doctor tried to force my levels to get within the normal range .. by having me purposely stress out and hurt which is known to raise the level. With all the days stress i was forced to do for the test.. well finally after that the abnormal reading of 46, was made normal as the reading did come back of 51 (normal lab range is 50-350). (Doctors dont seem to like me having abnormal readings..as they then dont seem to know what to do about them! forcing my reading into a normal level by having me do abnormal things.. well it leaves them then able to ignore it) You really shouldnt worry about all you read online... if you are worried about if your result which is normal.. could still indicate an issue.. why dont you contact the lab and ask??? Thank you for the post.
    taniaaust1 2267 Replies Flag this Response
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  • If normally done tests (which are done the right way) came back in the "NORMAL range" .. i personaly wouldnt worry about. Normal ranges have been set for a reason..as they are usually normal (representing no issue).quote] Actually I don't agree with this at all. Any level under 10 should be investigated further and possibly treated. This information has not come from websites I have been reading but from other doctors who have commented on my issues. Check out the ask a doctor section of this website who have made similar comments. I may be in the NORMAL range but I am in the very low normal range with less than 2 hours sleep which pushed up my stress levels - as I said above you are supposed to be nice and rested before doing a test like this. If you read any of my other posts you will see that I have many health issues and am far from NORMAL and have plenty to worry about. And as for you - your doctors an idiot, get yourself a new doctor before you drop on the street. Forcing up your levels so he can just ignore the result is negligent and dangerous. Find a new doctor to do proper testing and push for that referral to an endo. One thing I've learnt from my dealings with doctors is that they don't like their diagnosis to be challenged and are never keen to refer patients on even when it is blindingly obvious that they need it. Keep pushing him on it or go elsewhere.
    Larkenn 20 Replies Flag this Response
  • If normally done tests (which are done the right way) came back in the "NORMAL range" .. i personaly wouldnt worry about. Normal ranges have been set for a reason..as they are usually normal (representing no issue).quote] Actually I don't agree with this at all. Any level under 10 should be investigated further and possibly treated. This information has not come from websites I have been reading but from other doctors who have commented on my issues. Check out the ask a doctor section of this website who have made similar comments. I may be in the NORMAL range but I am in the very low normal range with less than 2 hours sleep which pushed up my stress levels - as I said above you are supposed to be nice and rested before doing a test like this. If you read any of my other posts you will see that I have many health issues and am far from NORMAL and have plenty to worry about. And as for you - your doctors an idiot, get yourself a new doctor before you drop on the street. Forcing up your levels so he can just ignore the result is negligent and dangerous. Find a new doctor to do proper testing and push for that referral to an endo. One thing I've learnt from my dealings with doctors is that they don't like their diagnosis to be challenged and are never keen to refer patients on even when it is blindingly obvious that they need it. Keep pushing him on it or go elsewhere. Thanks ... I dont think i have come across any of your other posts yet so didnt realise you had a lot more going on.... and yeah if ones telling you things are actual doctors, i'd be worried too. Im having to leave all the hormone stuff for the time being as Ive now developed some serious mental health issues, a mental health condition from all the stress ....so now are having to arrange therapy for that. I just are unable to keep up with all my health issues. As soon as Ive got things sorted out for my mental health (suicidal mood swinging etc, i had to spend several days in mental ward a couple of weeks back. Im completely unable to deal with any stress).. i'll then get stuck back into trying to get a referal to endocrinologist like i need. i hope you get your stuff all sorted out too... (and yeah..doctors dont often like patients who cases are too difficult for them and they just often dont like to admit that either). best luck
    taniaaust1 2267 Replies Flag this Response
  • I too have a huge problem dealing with stress or any change to my setout routine. If there's even a slight change such as someone showing up on my doorstep unexpectedly, I instantly feel panic, dizziness and feel faint. This isn't an anxiety issue and has only happened since I have been sick. I put this down to adrenal issues which causes these exact symptoms. You should definitely follow up with your endo appointment when you are well enough to do so. I am consulting a new doctor in the next few weeks so I will post if I get any kind of a diagnosis from him. He specialises in weird causes so it will be interesting to see what he can come up with. About my previous posts - my mistake they're on the MedHelp.org website so you couldn't have known about them sorry. You might have a look at their forum, its pretty good and they have an 'ask the doctor' section where real doctors will answer your queries.
    Larkenn 20 Replies Flag this Response
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