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.
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.
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.
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?
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.
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...
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?
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...
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.
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...
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.
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?
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.
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 :(
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.
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.
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
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.
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?
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...
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?
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.
Aldosterone replacement is florinef - you have it on the aldactone - so yeah the dizzy... and low sodium can lower the potassium which you probably did not need - so the doc is really playing games here.
Saw my doc yesterday. He's completely baffled now. My heart rate has been elevated the last few months, and he finally took notice of it this time, and it seemed to concern him. So, I left the office with a new diagnosis on my report sheet: Tachycardia. I remembered to mention the hair loss this time (there are so many things wrong that I never remember everything at once when i go!) and he looked at my TSH level again. He said that from June to Jan when I did the second test, my TSH dropped a bit, so he's checking T3 T4 levels to double check for Hyperthyroidism, which he is suspecting will be normal. But he admits that for everything I'm experiencing, Hyperthyroidism wouldn't explain it all. So he's going to send me to a derm, and probably an endo as well. He said the derm because regardless of what this is, he wants a derms imput on it as well. Well he's not just throwing pills at me I guess. I'm happy he's at least covering everything trying to get an actual diagnosis this time.
Upon mentioning the near black out moments on the Aldactone, he said we're def gonna stop that med considering its not helping anyway. My reaction? THANK YOU!
So, just waiting to hear from him, probably monday, which derm he wants me to go to. And after he gets the opinion from the derm, he'll find which endo he wants to send me to....
Oh, he mentioned possibly if not an endo, then a gyno who specializes in endocrine issues...maybe even a reproductive endo....uh, is that good/bad? Are they as experienced as a full on endo? A bit worried about that!
If you are not getting preggers - the repro endo is not good good. I never saw one but my buds that have - no raves.
If you find something pituitary you want pituitary endo - the neuro-endo. A regular endo does a lot of diabetes and some thyroid and the thyroid in general, mostly badly - check out the thyroid boards. For instance if your doc now suspects hyper to do the antibody test would have been smart but duh... no... and he did the regular Ts not the frees which are much better.... and lots of stuff can cause you to be tachy - he should send you on to a heart doc after an EKG if he is so worried...
I am confused about the docs he wants you to see - I would think a super endo, cardio, etc - but he is thinking girly.
lol, yeah he's confusing me a bit too. i don't know. i honestly think that me seeing a derm would make me feel better. its like a fresh start in explaining everything to someone. plus derms are required to have a bit more of a endocrinology background. probably more of a background than my primary has. so we'll see. he'll probably be calling tomorrow.
My only hope is that this person will take into account that my primary already has given me antibiotics which haven't helped. I'm going to make sure I lay down the law when I go. I'll refuse to take any medication until someone tells me what's causing it, because this isn't happening on its own. There is definately an underlying problem, even my primary doc admits that, and throwing pills at the symptoms isn't what I'm interested in. I hope whatever docs I end up seeing will respect my decisions and resolve to get to the bottom of this.
So I'm convinced that the heartrate thing is only because of the Vyvanse.
I have to call tomorrow to make an appt. with the derm. And about the Accutane, rumpled, I entertained the idea at first when I just wanted to get rid of the acne over a year ago, but as the hair got worse, I know its more than just bad acne so I'm goin to refuse Accutane. If this derm disagrees, I'll inform my primary doc, because he is NOT a fan of Accutane and he'll back me up, probably sending me to the endo if thats the case. So we'll see. Crossing fingers that I don't have to wait forever for a derm appt cause my doc says sometimes it can take a while to see one.
Ok, update...I saw the Derm yesterday. He looked through my tests. He asked all the right questions. He looked at my skin. He was going to recommend a prescription and I immediately got defensive saying I wasn't liking the idea of treating the symptom...He assured me that what he was prescribing was only for breakouts and to help some of the acne. He said it wouldn't get to the root of the problem. So, he said that it was time for me to see an endocrinologist. I thought AMAZING! This guy gets it! Really this prescription is only to make my skin look a bit better while I'm in the process of getting diagnosed. He agreed, like my primary, that the test results were baffling, but he wasn't going to be like my primary and give me meds to eliminate the problem. Rather he's giving me a med to help me cope as the problem is solved.
I did mention my concern that should this ointment work and my skin look clearer, that maybe it would hurt my case to the endo...he assured me that the man he sends his patients to will go over me with a fine tooth comb and he ALWAYS gets to the bottom of things. Plus the medication wont clear the facial hair....he said I have a constellation of symptoms and the doc will take into consideration that I'm using a topical Rx....well, that being if the stuff actually works. I'm quite skeptical at this point.
Biggest problem right now. Can't get in till September. I like the sound of this guy, but I know that because there aren't many in my area, the wait list is long. So, I called up my primary and left a message for him, letting him know that I'm referred to this Endo and I will not be able to see him until september. I want to know his take on this, whether he thinks this is the right guy to see or not. Perhaps I should suggest that I'd be willing to drive an hour to Chicago to see someone else. It's not that bad of a commute really and I am thinking since there are way more endo docs there, the wait might not be so bad? Maybe? I dunno. I'm hoping he'll call back tomorrow to work on a game plan for this. Until then, I'll medicate my skin. Here's hoping.
Hello, I am in Adrenal Crisis and am so lost. I would love to join ur group and learn what I need to do to get well and me back to me. I haven't got to read all of the comments, but I will get there and thank u guys, for any input I can get on Adrenal crisis and Addison's disease, since that was the orginal diagnois back in May.
My Endo told me that I had been going through this for a while, told me that I had Addisons(Cortisol level of 1, ACTH is 2.4 and prolactin is low, as well).
He put me on Hydrocortisone(15mg in morning and 5 mg in afternoon), and I have to admit that I have improved some, but I want to give my new Accupuncturist all the credit. The very first visit to him and I limped in and walked out. He has changedd my life, for I never felt that good only after his treatment.
I would appreciate any info guys that u can give me. Thanks and God Bless always.:D<3 Karen
It is best to start another thread so that your story is by itself... that being said, just posting I think joins this community.
I also do acupunture and find it wonderful.
I see you are on HC - and that is fine. How is your blood pressure? How is your sodium and potassium? A crisis is usually an event that happens with illness or stress on the body - so it should not last over time unless not treated but can be deadly - so I hope your doc advised you on stress dosing, gave you extra meds in your script and an emergency shot, needle etc and advised on a bracelet.
You may need to up your salt and fluids especially for summer.
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