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Hormone disaster- 20yr old female
Hey guys! So I've been chasing my symptoms in a circle for about a year now, the pituitary/adrenal/thyroid circle to be precise. I have been taking Medicin for ADHD since I was about nine and have been suspicious about the long term effects for quite some time as I have been trying to ween myself off. I am wondering if that is related to my current issues. Also, as a child I was diagnosed with a somewhat unidentified fainting disorder that we decided to call vasovagol syncope because I faint when my ears/back of head gets fondled. (Also wondering if that ties in)
Anyways, I am currently not taking birth control though I have in the past (not in well over a year- I always reacted horribly to it). I have been showing signs of what seemed like a pituitary tumor (weight gain, acne, excess hair, hunched neck thing, face getting round and deeper, brain fog, depression, ... Ect.) so I went to my obgyn and she immediately misdiagnoses me with PCOS and gave me metformin and spiralactone. But, I felt that this was not an accurate diagnosis as I have been thin and healthy all of my life so I went to another doctor who did a scan and confirmed that I had no cysts. However, my symptoms seemed like a pituitary tumor and the lab results confirmed multiple high cortisol in 24 hour urine samples over the course of two months (some were normal but most were high... The highest was around 100) and elevated ACTH in the blood. But then I got an MRI and it came back all clean. So my doctor told me to go to a med school since I am not a smoker and only 20 years old so she didn't feel it was nessasary to check for ectopic lung tumor. In the mean time, I have had a hard time battling with the weight and acne in addition to developing really unpleasant food allergies to wheat, dairy, eggs, and soy (all things I used to eat daily). In the last six month I have made extreme efforts to stabs like a decent sleep schedule as well as I am fatigued 24/7 without stimulants.
My new doctor did a 24 hour cortisol saliva test which revealed a pattern of high cortisol that crashes at night, suggesting that I am not getting restful sleep though my adrenals are hyperactive and my thyroid (T3) came back low indicating fatigue. Does anyone have any thoughts about this or suggestions for what to do or what test to requests next? Could stress alone cause all of this? Thoughts on the drugs? Anything is helpful! Thank you!
Anyways, I am currently not taking birth control though I have in the past (not in well over a year- I always reacted horribly to it). I have been showing signs of what seemed like a pituitary tumor (weight gain, acne, excess hair, hunched neck thing, face getting round and deeper, brain fog, depression, ... Ect.) so I went to my obgyn and she immediately misdiagnoses me with PCOS and gave me metformin and spiralactone. But, I felt that this was not an accurate diagnosis as I have been thin and healthy all of my life so I went to another doctor who did a scan and confirmed that I had no cysts. However, my symptoms seemed like a pituitary tumor and the lab results confirmed multiple high cortisol in 24 hour urine samples over the course of two months (some were normal but most were high... The highest was around 100) and elevated ACTH in the blood. But then I got an MRI and it came back all clean. So my doctor told me to go to a med school since I am not a smoker and only 20 years old so she didn't feel it was nessasary to check for ectopic lung tumor. In the mean time, I have had a hard time battling with the weight and acne in addition to developing really unpleasant food allergies to wheat, dairy, eggs, and soy (all things I used to eat daily). In the last six month I have made extreme efforts to stabs like a decent sleep schedule as well as I am fatigued 24/7 without stimulants.
My new doctor did a 24 hour cortisol saliva test which revealed a pattern of high cortisol that crashes at night, suggesting that I am not getting restful sleep though my adrenals are hyperactive and my thyroid (T3) came back low indicating fatigue. Does anyone have any thoughts about this or suggestions for what to do or what test to requests next? Could stress alone cause all of this? Thoughts on the drugs? Anything is helpful! Thank you!
Stress can raise cortisol for a short moment... But not overall for say a urine test.
A Cushing's friend of mine found it interesting that her mom who was terrified of needles, like screaming baby, faint type (which was horrible when she got cancer) got a cortisol test and the needle stick was a disaster with many sticks and her mom totally stressed out so my friend totally expected it to be high. It was normal.
Your current doctor is not an expert. Sad. Find one.
A Cushing's friend of mine found it interesting that her mom who was terrified of needles, like screaming baby, faint type (which was horrible when she got cancer) got a cortisol test and the needle stick was a disaster with many sticks and her mom totally stressed out so my friend totally expected it to be high. It was normal.
Your current doctor is not an expert. Sad. Find one.
She said that I can go to emory if I want to but I may not need to since the only concrete evidence I have of something being wrong is proof of elevated cortisol (which she says can be stress) and somewhat elevated ACTH, aside from weight gain, acne, constant hunger, ect.
It's like I have the signs of cushings and PCOS but don't have the labs to support either diagnosis.
It's like I have the signs of cushings and PCOS but don't have the labs to support either diagnosis.
I went back to my endo and she did the dex suppression test which came back totally normal. As you said, upon getting normal results she no longer suspects cushings. She suggested that I see a new psychiatrist to discuss whatever concerns I have about the ADD Medicin.
I know that normal labs are supposed to be good news but this really feels like bad news. I feel crazy and like everyone thinks I am making this up.
I know that normal labs are supposed to be good news but this really feels like bad news. I feel crazy and like everyone thinks I am making this up.
The ACTH is moderately high, and given that the test is rarely done well (chilled tube, spun immediately) the level can drop just from lab handling.
The pituitary clinic can look at the films and may pick up on other things than the radiologist did.
I hope they accept you. Keep us posted.
The pituitary clinic can look at the films and may pick up on other things than the radiologist did.
I hope they accept you. Keep us posted.
Interesting.
My ACTH blood test came back 65 pg/mL (reference 6-50) So I know that it is high but I do not know how high that is considered. The decision I have to make now is what to do next. My options are to either go to a pituitary specialist (Emory pituitary clinic) despite having a clear MRI or to try to manage my stress on my own with supplements.
I am not sure what to do.
My ACTH blood test came back 65 pg/mL (reference 6-50) So I know that it is high but I do not know how high that is considered. The decision I have to make now is what to do next. My options are to either go to a pituitary specialist (Emory pituitary clinic) despite having a clear MRI or to try to manage my stress on my own with supplements.
I am not sure what to do.
I actually like a mix of blood tests and urine and saliva. The reason is the urine and saliva are the "free" form of cortisol and more prone to issues with medications and cortisol binding globulin. Only a few docs test for that and know the impact on testing. It also works that sometimes point in time testing is hard, and averages may work better for some, and vice versa. There are pros and cons in all the testing so it is good to have a mix.
The only test I despise is the dex suppression test as the docs use it as a test of exclusion when it should be a test of source logically. But no test is perfect. I failed all suppression tests (still do) and so most docs will dismiss just on that.
I asked about the tan as ectopic rumors pump out high amounts of ACTH. It is that hormone that causes the tan as the first fifteen molecules of the ACTH is the same as melanin. I have high ACTH due to my tumor so I have a tan and age spots. Lovely.
I did/do accupucture. Love it.
The only test I despise is the dex suppression test as the docs use it as a test of exclusion when it should be a test of source logically. But no test is perfect. I failed all suppression tests (still do) and so most docs will dismiss just on that.
I asked about the tan as ectopic rumors pump out high amounts of ACTH. It is that hormone that causes the tan as the first fifteen molecules of the ACTH is the same as melanin. I have high ACTH due to my tumor so I have a tan and age spots. Lovely.
I did/do accupucture. Love it.
I actually like a mix of blood tests and urine and saliva. The reason is the urine and saliva are the "free" form of cortisol and more prone to issues with medications and cortisol binding globulin. Only a few docs test for that and know the impact on testing. It also works that sometimes point in time testing is hard, and averages may work better for some, and vice versa. There are pros and cons in all the testing so it is good to have a mix.
The only test I despise is the dex suppression test as the docs use it as a test of exclusion when it should be a test of source logically. But no test is perfect. I failed all suppression tests (still do) and so most docs will dismiss just on that.
I asked about the tan as ectopic rumors pump out high amounts of ACTH. It is that hormone that causes the tan as the first fifteen molecules of the ACTH is the same as melanin. I have high ACTH due to my tumor so I have a tan and age spots. Lovely.
I did/do accupucture. Love it.
The only test I despise is the dex suppression test as the docs use it as a test of exclusion when it should be a test of source logically. But no test is perfect. I failed all suppression tests (still do) and so most docs will dismiss just on that.
I asked about the tan as ectopic rumors pump out high amounts of ACTH. It is that hormone that causes the tan as the first fifteen molecules of the ACTH is the same as melanin. I have high ACTH due to my tumor so I have a tan and age spots. Lovely.
I did/do accupucture. Love it.
Yes, it was four samples. I really like the doctor I have now, kudos to him indeed.
It is hard to monitor the effectiveness of the ADD medicine. I have been on it for most of my life. Because of this and the accumulation of all these health issues I don't really have a good grasp of how I am supposed to feel anymore. (for example, I didn't know brain fog was a thing. I thought brains were just very foggy places for everyone so they give mind clearing pills to the especially cloudy children, like myself) However, I am going to look into dopamine and glutamate. I will say that my ability to keep up with the pace of life itself is declining. I am doing the best I can however, I am frustrated because I feel useless when I do not take my adderall or vyvance but overwhelmed and anxious when I do take it. It is such a violent swing to take over and over again. I am so exhausted by it.
Interesting about vagus nerve and reiki and acupuncture. When I first started to suspect I had a hormone imbalance, I tried acupuncture to attempt to regulate my menstrual cycle. I really enjoyed the deep sleep.
Thank you for the kind words!
It is hard to monitor the effectiveness of the ADD medicine. I have been on it for most of my life. Because of this and the accumulation of all these health issues I don't really have a good grasp of how I am supposed to feel anymore. (for example, I didn't know brain fog was a thing. I thought brains were just very foggy places for everyone so they give mind clearing pills to the especially cloudy children, like myself) However, I am going to look into dopamine and glutamate. I will say that my ability to keep up with the pace of life itself is declining. I am doing the best I can however, I am frustrated because I feel useless when I do not take my adderall or vyvance but overwhelmed and anxious when I do take it. It is such a violent swing to take over and over again. I am so exhausted by it.
Interesting about vagus nerve and reiki and acupuncture. When I first started to suspect I had a hormone imbalance, I tried acupuncture to attempt to regulate my menstrual cycle. I really enjoyed the deep sleep.
Thank you for the kind words!
Kudos to your doctor for doing 24-hour cortisol saliva test instead of relying on blood tests. Was it 4 samples of saliva?
Did the ADD medication work for you previously?
I used to take Adderall. When I started to have lots of medical issues, the Adderall was no longer effective. I was hyper all day long...wired, but tired. Under-active adrenals & thyroid. Low dopamine, high glutamate.
I believe I had vagus nerve sensitivity as well. Did energy work (including Reiki & acupuncture) to calm it.
I feel for you. I wish for you lots of patience. Stay connected here to help you keep your sanity and know that you are not alone in your experiences.
Did the ADD medication work for you previously?
I used to take Adderall. When I started to have lots of medical issues, the Adderall was no longer effective. I was hyper all day long...wired, but tired. Under-active adrenals & thyroid. Low dopamine, high glutamate.
I believe I had vagus nerve sensitivity as well. Did energy work (including Reiki & acupuncture) to calm it.
I feel for you. I wish for you lots of patience. Stay connected here to help you keep your sanity and know that you are not alone in your experiences.
Thank you so much for responding. It's nice to not feel so crazy. This whole experience has been quite isolating, I'm sure you understand.
I used to not sleep at night and then couldn't get out of bed for even noon classes. It's strange, it almost feels as though I have slipped from Addisons to Cushings.
I have never taken any steroid anything although adderall/vyvance certainly feels like a mental steroid. Does that count? I worry that there is a connection between the long term effects of ADD medicine, combined with a brief use of antidepressants (plus abilify) a few years back, plus some sort of vagus nerve sensitivity, that could have created a perfect storm by manipulating the dopamine receptors and causing something kinda sketchy up there or at the very least, explaining sympathetic dominance. But then again, what came first; chicken or the egg? I keep being told that the brain chemicals and the hormones are separate but I know that is some kind of relationship between the two I just haven't quite gotten there yet. I said something about prolactin to my OBGYN and she asked me if I was lactating and before I could finish the word "no" she told me I didnt have a pituitary tumor. ha..
I am considering making an appointment at Emory Pituitary Center over the summer once I get through finals. My mom suggested that I go away for a yoga retreat thing to help manage my stress. Will probably do both..
I do not currently have a tan but I would love to know why you asked.
I used to not sleep at night and then couldn't get out of bed for even noon classes. It's strange, it almost feels as though I have slipped from Addisons to Cushings.
I have never taken any steroid anything although adderall/vyvance certainly feels like a mental steroid. Does that count? I worry that there is a connection between the long term effects of ADD medicine, combined with a brief use of antidepressants (plus abilify) a few years back, plus some sort of vagus nerve sensitivity, that could have created a perfect storm by manipulating the dopamine receptors and causing something kinda sketchy up there or at the very least, explaining sympathetic dominance. But then again, what came first; chicken or the egg? I keep being told that the brain chemicals and the hormones are separate but I know that is some kind of relationship between the two I just haven't quite gotten there yet. I said something about prolactin to my OBGYN and she asked me if I was lactating and before I could finish the word "no" she told me I didnt have a pituitary tumor. ha..
I am considering making an appointment at Emory Pituitary Center over the summer once I get through finals. My mom suggested that I go away for a yoga retreat thing to help manage my stress. Will probably do both..
I do not currently have a tan but I would love to know why you asked.
Stress does not cause it, but the high cortisol can cause a lot of anxiety and depression .
Normal sources are a pituitary tumor, adrenal tumor or ectopic being rare. The most common is just taking steroids like for other disorders such as asthma. Ectopic would be signaled by super high ACTH. Do you have a tan?
I would find a good endo, a different one that knows Cushing's. You need a pituitary center. You have enough tests now to go. The normal MRI should not hold you back. Many times they smaller rumors don't show up as they fall between MRI slices or are missed.
I had it myself. I had the opposite. I crashed during the day and was high all night. I never slept.
Normal sources are a pituitary tumor, adrenal tumor or ectopic being rare. The most common is just taking steroids like for other disorders such as asthma. Ectopic would be signaled by super high ACTH. Do you have a tan?
I would find a good endo, a different one that knows Cushing's. You need a pituitary center. You have enough tests now to go. The normal MRI should not hold you back. Many times they smaller rumors don't show up as they fall between MRI slices or are missed.
I had it myself. I had the opposite. I crashed during the day and was high all night. I never slept.
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