Aa
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?
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?
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...
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...
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...
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.
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.
Have you been tracking your blood pressure?
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?
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