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Avatar universal

I just want answers...

I've posted a couple things about this, and if you want to read a more detailed history, its in my posts in my profile.

Basically, I've been suffering from bad, unrelenting cystic acne, facial hair, BAD hair on my chest, abdomen, all over my inner thighs, thinning hair on my head, irregular periods, joint pain that flares badly then disappears, a couple numb toes on each foot, extreme fatigue that no amount of sleep can cure, memory problems, easy bruising, slow healing wounds, muscle spasms...

My doctor has tested me for PCOS and is baffled because my test results showed no signs of it and i only had one cyst on my ovaries.  He tested me for a bunch of other things like lupus, RA, and metabolic disorders but all of it was negative.  BCP didn't work.  He had me on doxycycline to fix the acne and after 2 months, switched me to cephalexin which upset my stomach and still didn't work.  When I went in to see him again last week, he put me on aldactone to help with the hair AND acne and told me to stay on the cephalexin as well.

Before the appt was over, I mentioned cortisol levels.  He looked through my tests and said that he never ordered one and it couldn't hurt, although he DOUBTED that it was cortisol because i don't have the striae and i'm not obese/oddly proportioned. (If you read my prev post, youll know that i was almost at 200lbs at one point and i'm now down to 148, but mainly because of vyvanse for my adhd which suppresses my appetite....and as far as proportions, almost ALL my weight is carrie in my upper back.  i don't have the fatty hump on the neck for cushings, but the fact that i carry it in my face and my back drives me crazy because no one in my family carries weight like that but me.)  He said to measure the cortisol, the 24 hr urine test is the best (which is somethign I knew) but he said it would be "easier" to just stick a needle in me and get some blood cause the lab girl was still there.  That was at about 5pm.  

The next day, his nurse called to tell me my cortisol was normal and my dr wants me to keep taking the aldactone and cephalexin and see him in a while if the acne/facial hair doesnt get better.

Im sick of him just throwing pills at me.  Even if it works, am I paranoid or something for still wanting to know what's causing this?  And what will giving me these pills do to help my irregular periods?  From what I'm reading on aldactone, this has a side effect of making women irregular.  He doesn't seem to think my numb toes/joint pain/muscle twitches are a big concern.  He did say that if it doesn't improve, he'd refer me to a derm or endo.

I'm about ready to cry now.  I mean, I could have sworn, after all the other neg tests that this had to do with cortisol.  Is it possible that the blood test for the cortisol wasn't right?  I mean, I do work odd hours...all hours of the day really cause I'm flex...so maybe that is screwing up my body's time clock for when it should be measured.  And regards to my weight, I was having insane trouble dieting.  I would never lose more than a few pound here and there, but then I'd gain it back, and I don't constantly eat unhealthy either.  I know the current weight loss is attributed to my medication, so can someone tell me if its feasible for me to have high cortisol and lose weight simply because I'm hardly eating (not often more than one thing a day).  Otherwise, I'd definately still be closer to 200 which for a 5'2 25YO woman isn't good.

There is SOMETHING not right.  Can anyone help?
37 Responses
Avatar universal
The time of your cortisol test wasn't right, that is one thing that is "wrong".

Serum cortisol is best measured at 8am when it is supposed to be at or near it's highest point of the day. It can also be measured and compared to an 11pm draw, when it is supposed to be at its lowest point of the day (diurnal pattern). Since there are few labs open at 11pm, doctors will often order a salivary swab test that you can do at home to check the 11pm level.

I'd push for the 24 hr urinary free cortisol (UFC). It might be less convenient to collect urine over 24 hours, but it will show an average of your cortisol production over time,  instead of a single point in time draw. 5PM draw just isn't that diagnostic.
Avatar universal
COMMUNITY LEADER
Yup, a 5pm cortisol test is pathetic.
Just because you don't have the straie (I can point to people that do not) and other symptoms - does not rule the disease in or out. One test does not rule the disease in or out. Heck the pathetic guidelines even say to do three different tests but at least do them correctly.

Just having weird proportions is a clue that something is up - and you need to get to a better doctor and get on it.
Avatar universal
Yes, I agree, and I really do think I'm oddly proportioned.  But my doctor made a comment that I wasn't.  But he didn't really look at me.  I wasn't wearing the right clothing or something I guess.  Even my mom has commented on how it was odd that I was loosing all this weight, but nothing seemed to be coming off my back.

About a month ago, I was feeling good about how I looked.  I bought a new top that hid the upper body weight pretty well.  Then a week and a half later, I wore it again to another night out with friends.  The thing is, my face had ballooned.  And in pictures, my trunk area under my breasts (which also has an odd 'love handle' kind of collection of fat) grew, my back seemed bigger, my acne went psycho on my, the hair is even worse, and even my father commented on my face breaking out.  He hadn't said anything like that since I was in high school.  I felt very self conscious.  I have asked my friends to delete the pictures because I look like I gained 20 lbs, but the thing is, I didn't gain one single pound from the last time I had worn that outfit.

And the thing is too, my arms arn't thin, but can't that be attributed to the fact that I have been heavy my whole life.  So if it is cushings that has cropped up in the last few years, is it possible that I don't have the thin arms as well?  Plus, I was a swimmer.  I did have some muscle in those arms.  And since I've lost weight, my arms have really lost some mass because tops that were tight in the arms have a TON of breathing room now.

My doc also says its not cushings because I'm losing weight.  Well, if I don't eat regardless of what disease it is, wouldn't it be obvious that I'm going to lose?  Or am I wrong?
Avatar universal
COMMUNITY LEADER
You could be cyclical/episodic and in that case, you can lose weight.

He is not an expert. I have met thin cushies, moderately fat, super heavy and weirdly made ones - some can lose, some cannot.

I was a cyclical one - I went through eras where I was fat, thin, fat, thin, fat, thin, and it was all bizarre as I never changed my eating habits. Finally though, I just started to gain gain gain. Ugh.
Avatar universal
So update.  Basically, I've taken the Aldactone for a week and a half now and granted my doctor says it would take about two weeks before seeing results of my face clearing, I still expected that maybe breakouts would at least be suspended before that 2 weeks hit.  Well, guess what.  It broke out again.  And sure, I have a few days before two weeks, but my hair is growing in overnight.  I plucked all the stupid hairs yesterday, late in the evening.  I woke up today, and it doesn't look any different.  I want this to go away...
Avatar universal
Oh, and rumpled,

I agree with possible cyclical/episodic cushings.  It would make sense because I lose weight, and a lot of it....then there are periods of about 2 weeks were I will bounce up and down 3 lbs.  I'm pretty sure that if I wasn't on the vyvanse, I'd be gaining a TON.  So that's my theory on it.

And do you or does anyone else know much about androgens?  I know that the reason he put me on aldactone is because it suppresses the androgens responsible for acne/hair growth...that would make sense....IF levels were high.  Then again, it would point to PCOS if they were high too.  Fact of the matter is though, my androgen levels were almost as far to the low end of the "normal" range as you could get.

My uncle, who is a nurse and the ADON where I work, said that maybe they "normal" range isn't "Normal" for me.  Which doesn't make sense.  How much freaking lower androgens have to be then for me to be my own "Normal" and why do health care workers bother having a "normal" range if when something doesn't make sense, then they just claim that everyone has a different "normal".  Either its normal or not.  I don't see a grey area to be honest.

Could this drug cause my levels to get too low?  And if so, what would happen?
Avatar universal
COMMUNITY LEADER
Ah - they tried that with me - I was on the aldactone too - it was horrid.

Symptoms from hormones come from too high or too low - so too low and you should, in theory, feel awful from that.

The whole range thing is ... ah - you made me laugh - they said that to me too! Sad.

I am not an expert with androgens - all I know is that they come from the adrenals, the pit, the ovaries and the testes and the docs rarely test the whole loop as well as the binding hormones and all the testosterone types.

3lbs - they are going to cry water weight I bet...
Avatar universal
actually, my doctor attributes going up and down 3lbs as well as a major outbreak i had a couple of weeks ago to my period which I had FINALLY gotten...He seems to dismiss the fact that I have outbreaks when I don't get my period.  Plus my periods when I actually DO get them, they are really odd anymore.  its like, one light day, super heavy day, then the third day super light.  every once and a while i spot in between....  A month an a half is the soonest I get the next one...usually its 2-3 months.  But hey, I've gone 7 months before.  So, I don't know how he can attribute things like that to my period, when THAT's not even right.
Avatar universal
COMMUNITY LEADER
That is just... I don't have words.
That reminds me of the story of when I called the doc one when I had a period lasting 30 days and she yelled at me that is was not long enough to bother her with so I just let it go to the 45 days and when I had the appointment and she say the records that it lasted 45 days she asked why I did not call!

Yeah - I don't consider that regulated or even normal and how that makes the doc happy - not sure...
Avatar universal
Update:

The last year I've been having short of breath moments.  Kinda where regular breathing doesn't cut it and I really need to take a DEEP breath to get in enough air to make me feel satisfied.  I never really bothered mentioning it at first but in the last several months I've noticed it happening more often and for longer periods of time.  This last week, its been happening every day now, and sometimes it's hard to get to sleep because of it.  I'll check my O2 at work at its 99 to 100 percent.  But still, this is annoying.

And now I'm getting dizzy upon standing whether from lying down, sitting in my bed, or sitting in a chair...Yesterday, the woozy/dizzy feeling came when I just turned my head.  Its starting to freak me out a bit.  My dad thought I was close to passing out at one point.

I'm sure if I bring it up with my doctor he'll just say it's the Vyvanse probably....even though the breathing problems started before the Vyvanse, and the dizziness, well, I've been on it for a while and never had these problems.  I feel stuck.
Avatar universal
COMMUNITY LEADER
Have you been tracking your blood pressure?
Avatar universal
yes.  it spiked to 140/84 when i went to my psychiatrist to get my vyvanse refilled.  he checked it because vyvanse can cause increase in BP.  But he said that one occurence isn't enough to get worried about just yet.  He told me to keep checking it in the following days.  I had an appt. with my Primary the next day and it was 117/72.  Then work the next day it was 114/67.  My systolic before taking vyvanse WAS high nineties/low hundreds.  So yeah, its gone up a little, but I haven't gotten any readings like the 140 again.  I'll admit.  That particular day I WAS stressed a bit, so I understand when he tells me not to get anxious over one reading.  But my resting heart rate is ALWAYS high anymore.  I was usually high sixties/low seventies for resting, but now its over 100 everytime.  And that too I am going to attribute to the vyvanse because it occured when I was bumped from 60 to 70.  And I know I'm talking a lot about vyvanse, but I just want to make people aware what is/is not a side effect of medication because that plays a big part in diagnosing.  I have a feeling that if I do see an endo, i'll end up having to stop it for a week or so.  The short of breath thing has been happening a lot longer than I've been taking vyvanse though.  Maybe it has something to do with my heart...my psych did say he would perform an ekg sometime.  But if it isn't, could high cortisol be the culprit for breathing difficulties?
Avatar universal
I had an afternoon cortisol test. last Fall that came in low. My doc sent me to an endo with a prescription for a stim test. She said she was not going to do it, because the afternoon tests are nothing and even though I had symptoms, I probably was OK.

I continued to feel miserable. She knew I was having major surgery. A week before the surgery, she calls and tells me to get an 8 am cortisol test. She called the next day saying she was"shocked". My family doctor told me it was zero.
Avatar universal
Oh, so you'res was low?  what were your symptoms?  Because I keep thinking that mine might be high even though that test he did said it was "normal".  I never got print offs of it, but i'm thinking i'm gonna go ask.

I know with another test my doctor did, my estrogen levels were high.  According to what I've learned through rumpled in other threads, or at least to how i understand it, high estrogen levels bind cortisol, so i'm wondering if that's the case with me.

But this just goes to show...If she considers those afternoon tests to be 'nothing' then it makes me skeptical of my own results.

The only thing that I'm sure of is something isn't right.  And I hate making so many appointments, but I just want this fixed :(
Avatar universal
COMMUNITY LEADER
Estrogen binds free cortisol - not serum so it will not effect blood tests. It will effect saliva and urine tests.

High cortisol can cause a variety of symptoms - I am not familiar with breathing issues but I know about heart issues so an EKG would be prudent.

It helps to test at different times of day.
Avatar universal
Another update.  I know I mentioned before that the hair on my head was thinning aside from my facial/body hair which is growing rapidly....but now, I'm really losing hair on my head.  Seriously, its everywhere anymore.  All stuck to all of my clothing...all over the bathroom...my bed...my car seat...I'm getting really upset over this and its not even time for me to make an appointment with my doctor yet.  Hate this waiting game while taking pointless pills.
Avatar universal
COMMUNITY LEADER
When I had it (that is gone due to removal of my adrenals - have new problems now :) ) I had lots of hair where I did not want it and less hair where I did want it... It made me feel so pretty... not.
Keep a cover over the drain - I had a lot of plumbing issues until I did that.
Avatar universal
Update...sorta

Over the years, I thought my mother believed me to be paranoid in saying my hair was thinning...but in the past few weeks, its really become noticable.  In fact, last night, I was close to wanting to cry when a coworker, who was once a hair dresser before becoming a nurse, commented that I was getting the breakage of hair at the base of my neck which when people "extreme diet and lose a ton of weight quick it happens" he said, "and yours really has thinned out".  (Bear in mind he was not looking to be mean in pointing it out.  I appreciate his observation because now I know I'm not crazy.)

He proceded to say it happened to his daughter when she went on some liquid diet and lost 25 lbs quickly but she eventually grew her hair back just fine.  Now, to make it clear, my friend TOm understands the meds I'm on and its side effects of weight loss and he doesn't view me as a "Extreme dieter" but was explaining how losing as much as those people have in short time regardless of it being "extreme" or not, it isn't uncommon to lose hair or risk some damage to it.  

Then I smiled, and I pushed past the urge to cry as I told him "I've been losing my hair for the last FEW YEARS...its only gotten worse in the last two months."  His smile then faded and he instead looked perplexed and rather baffled.  I mean, I had been losing hair for a few years now.  The weight was a new thing.  Before, I'd lose 20 lbs, put it back on, lose 20, put it back on....He concluded that if it wasn't the losing weight making this happen, then there was something not right, possibly even something serious, and I knew I needed to get it checked out if it was worsening from Tom's perspective.  Considering he knows a lot about hair, I trust him when he says that there is something not right.

Just to let you know, in the past, my hair was not EXTREME thick, but I had plenty of it.  It was a fairly thick pony tail.  For the last few years, my ponytail has shrunk to LESS than an inch thick at the holder.  The hair at the base of my neck no longer grows right.  It grows in several directions, is fairly course, and it curls up in a fluffy tuft right under my ponytail....it's been getting increasingly noticable lately hence why Tom commented last night.  And now, I've got these short flyaways all over my forehead hairline...It's starting to look like my body decided to give me bangs for the heck of it, and I haven't cut bangs in a LONG time.  

Speaking of, the last time I got it cut, I noticed the stylist had her face up to my hair and appeared to be studying it.  She was doing it the entire time she was blowdrying and combing it into place.  She finally saw me looking at her confused, to which she said.  "This might sound weird, but I've been looking at all of these short ones you've got up here...and considering the light, delicate, soft and downy texture...I do believe that's baby hair growing in..."  My eyebrows lifted high and I was completely boggled (this was before I had suspected a cortisol problem).  "I didn't know anyone COULD grow that," I replied.  I just thought it was a phase....but its becoming a never ending nightmare.

And my skin!  I wash, I scrub, I just leave my skin alone at times, I'll go for a few days without make up, I have tried about five different scrubs, over a dozen different cleansers, rubbed on the repairing lotion, and attempted a facial mask....NOTHING has improved my skin.  It's oily, full of blemishes, and is peeling, then I scrub with a facial scrub pad (like a brillo pad for your face) it removes the flakes, but my skin is no longer moisturized.  I moisturize my face, and suddenly I see skin peeling away again...like a damn onion.  My doctor can take the aldactone, keflex, and doxycycline and shove it.  To hell with his diagnostic technique.  NO ONE can listen to everything I've been through (even just the hair and skin alone) and tell me it's in my head or its not as bad as I think.  I feel so alone in this!

Sorry...I just had to rant.  I understand if no one wants to read this update.  Thanks guys... -Christina
Avatar universal
COMMUNITY LEADER
The baby hair is called lanugu. I know that word because I have the same hair around my hairline almost all the time still.

That being said, I don't have as much now but my hair dresser noticed the same.

I used to have the same really oily skin. I even tried accutane! (sp?) and nothing helped which to me is a giant clue that my body is really fighting everything and hello - yo! is anyone listening? Clue!

It will get better once the source of the issue is found - once the determine it is a symptom and not a condition all its own.
Avatar universal
So, I made an appt. to see my doc on friday, where I'll pretty much have to tell him to just send me to an endo cause I'm done.  When I went, I asked for a copy for all my labs I've had done since Dec.  My cortosol (Which was drawn at 5pm remember) was listed at 9.  It says the normal range for an AM spec is 5-25.  The PM range says its half the value of the AM.  I don't understand.  Do people with high cortisol levels have high levels all day long?  What if my cortisol was high, above 25 at 8 am then dropped down to 9 by 5pm?  How can he assume anything on this?  Plus, I work random hours....a lot of nights...sometimes PMs.  Sometimes, (a combination of me not sleeping well the last few years and because of my vyvanse keeping me awake during the day after I work) I just don't get sleep.  A lot of times when I don't work for a few days, I stay up until 4am.  Would my internal clock for cortisol production be screwed up too?
Avatar universal
Oh, here are some other lab results.

DHEA Sulfate:  403    /Range 35-430
Testosterone:  30    /Range 0-80
FSH:  4.8    /Range 2.8-11.4
LH:  7    /Range 1-12
TSH:  1.06    /Range .47-4.68
Sodium:  137    /Range 137-145
ESR:  1    /Range 0-20
Glucose:  76    /Range 70-99
WBC:  5.2    /Range 4-12
RBC:  5.07    /Range 3.8-5.3

Now, the DHEA, its still in the range but at the high end.  Does this mean anything?
Avatar universal
COMMUNITY LEADER
Oh... if you work nights - you are in a different ballpark! And yes, that can and will screw with your cortisol... Dang it.

People with high cortisol levels can be high all day long or all night long - what some smart docs look for is a loss of diurnal rhythm which is going to be hard with your schedule. So when you test, you are going to have to let them know if it is after sleep or not. That whole thing is going to be a mess and your doc has to be good.

Weird that your sodium is so low - that may mean a renin/aldosterone issue too... How is your BP? Your dhea is higher and  your FSH and LH are low side...
Avatar universal
My BP has generally been normal...systolic has been between 110-120 for the most part BUT, it has spiked to 140 once before (I am questioning whether that one was accurate cause my Psych's BP machine is ancient and I wonder when it was last calibrated).  The last time I did take it, it was 107/80.  Now, I know those are "normal" however my BP in the past was generally high 90's low 100's for systolic.  I used to be low as MY normal.  It ***** because I wish I could be more accurate because I don't know if the reason it stays in the 110-120 ballpark is because of cortisol, or because of the Vyvanse, which a rise in BP can be a side effect.  Also, my HR is elevated.  I've been attributing that mainly to the Vyvanse as well because the only started when my dose was upped from 60 to 70.

As far as Aldosterone.  Isn't Aldactone supposed to block that?  Or do I have that wrong?  If Aldosterone was low, what would be the side effects?

As for sodium, yeah I thought that was weird too.  I don't add salt to everything I eat, but its not like I am careful about it either.  Although, I do add a lot of soy sauce those few times I eat Chinese, hah hah, and that is definately a sodium filled meal.  What would cause low sodium?
Avatar universal
OK.  So I did a bit more looking.  Fabulous.  Aldactone decreases of absorption sodium and water....lovely.  And those test results where my sodium is low was BEFORE I was taking that.  Which means if it was borderline before, it might be lower than that now.  On top of that, I was looking up the side effects of low sodium.

"...Examination should include orthostatic vital signs and an accurate assessment of volume status...."  

Uh, would that include orthostatic hypotension?  Because ever since I've started taking this, when I stand I get dizzy at times.  About five times in the last 2 months, I've had bad enough of a spell were I had to lean against the wall after taking about three steps because everything moved and my vision briefly got dark and my ears got really quiet.  But then it was alright again as suddenly as it came.
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