Hi,
FYI, I am a woman. To be honest I find reading the men’s hair loss forums to sometimes be a little more useful than the women’s. I am part of a group on FB for female hair loss, it mostly centers around wigs, toppers, why me posts, and blind acceptance of Androgenetic Alopecia without digging deeper when things just simply don’t add up. I find the men’s groups sometimes are more up to date on research and also think more outside the box when it comes to unusual hair loss. So, I hope you all don’t mind a female here. Apologies if I'm overstepping any boundaries.
I have posted before on these boards earlier in the year. My journey is a weird one. It started a few years back and unrelated to hair loss. It may have started at the very beginning of my existence, in utero, but we'll get to that later. I started developing some unusual symptoms and blew them off as job burnout, depression, chronic stress, you get the idea. Depression, lethargy, increased anxiety, hypervigilance, sleep disturbances (middle of night awakenings and constant REM stage), zero libido, hyperhidrosis, intermittent muscle and bone pain, mood swings, rage episodes and irritability, body composition changes, night sweats, hot flashes, chronic headaches and migraines, fatigue, weight gain, and...wait for it...thinning hair. These were my symptoms in a nutshell, I literally have a four page list. They sound very vague and could be suggestive of many things. For years I went to various doctors with my complaints only to find all labs are normal and no one believed my hair was thinning. No thyroid issues, no nothing.
Fast forward to 2017, sick and tired of gaining weight and losing hair (never was considered that overweight, I started out skinny but gained around 30 lbs) I became convinced I had signs of early perimenopause. All my symptoms seemed to align, except for, you know, being like 29 at the time. I went to my gynecologist and asked for hormone testing. She kind of half-assed cherry picked what tests to run, which was dumb on her part, but overall everything came back normal, except for my total testosterone however my free testosterone, which is what effects your tissues was normal and in range. I was found to have high prolactin, but only mildly so and on the retest it came back into range. Told nothing was wrong.
Eventually went to an endocrinologist because I kept getting worse and I was planning to start trying for a baby so I wanted to sort some issues out and check my prolactin again. Prolactin was high again so I was booked for a pituitary MRI since it could be caused by a benign pituitary tumor called a prolactinoma. Before my MRI, I took a vacation in January 2018, but caught the flu and was very sick with a high fever. Came back and took a month to fully get over the flu, which was odd for me. March comes along and all of my headaches, rage issues, hot flashes, etc. are way worse and then my hair started falling out. Now, it was thinning on the sides of my head from around at least 2016-present time, but this was just wads and clumps of hair falling out. See a derm, who tells me Telogen Effluvium from the flu I had two months back and the sides may be unrelated and possible early Androgenetic Alopecia. Had my MRI, it came back clear.
More hormone tests, all continue to show normal free and bioavailable testosterone but borderline and high total testosterone. High-normal to high out of range sex hormone binding globulin, this is the opposite feature of PCOS, women with PCOS have low SHBG and high free and bioavailable T. My DHEA-S was in range and aside from prolactin, nothing was out of the ordinary. My A1C and fasting glucose were perfect and also my fasting insulin. I wasn't getting any answers from this endo so I decided to see a reproductive endo. He told me right off the bat, PCOS, even without running his own labs. At this point I noticed my hairline was receding and my temples were balding. I accepted the pcos diagnosis blindly and was referred for a two hour oral glucose test. I bombed it, I was diagnosed insulin resistant and pre-diabetic. This is odd. No one in my immediate or extended family have diabetic issues and also no one in my family history either. I was also losing weight at this point and was being accused of anorexia from doctors, which was not true. I now weigh 100 lbs, which is my old weight and I was able to get back here easily after cutting out sugar and carbs and eating low GI foods. I'm 5'0, so I'm very short. 100 lbs is totally normal for my build, which is why I was so upset at 136 lbs.
Despite doing everything they tell pcos women to do, nothing helped. I was put on low androgen birth control, metformin that I had to stop because it made me sick, spironolactone 150 mg. I was doing strength training with a personal trainer and only eating low GI. Hair was still falling out in clumps and receding. I joined a Reddit sub for pcos and no one there had any of my other symptoms. It was around then that I also started developing more body hair, not hirsutism style but more like hypertrichosis. It was like all the blonde vellus hair all over my body just increased and grew crazy long, I used to be virtually hairless before. I started freaking out that I had something worse than pcos after googling sudden hair increase late in life and the pop-up noted adrenal cancer. I had ask my old endo to test cortisol because I had suspected Cushing's Syndrome in the past when I started getting my odd symptoms and she told me I didn't look cushingoid, but it does take year to take on the appearance so she gave me an AM cortisol blood test. I was borderline. She gave me a 24 hour urine, I was again borderline. She ran another blood and again, borderline. She eventually told me to forget it and that I was the most anxious and stressed patient she had ever had and I needed psych help. I pushed for an abdominal ct scan to check my adrenals and that was normal.
At this point I was getting severely sick. Was getting unexplained diabetic glucose readings some days, but normal readings on others eating the same foods. I developed hypoglycemia episodes, got cellulitis in my ear that took two heavy antibiotics to cure, developed severe muscle and bone pain from around June-August that never left me and I could hardly walk, rapid tachycardia for no reason, my heart rate resting would be at times 160! I developed hypertension as well. Lots of issues going on with no explanation. I had my primary care doctor run my cortisol and dheas again and both jumped way up. My cortisol was over 2x the upper limit of normal, dheas was still in range but jumped almost 200 points. I was getting weird white blood cell readings too, of high neutrophils and low lymphocytes, also immature granulocytes in my blood. Saw a hematologist a few times, no blood cancers, no lymphoma. Still losing hair and devastated.
I faxed my results to an endocrinologist who specializes in Cushing's at Memorial Sloan Kettering. She accepted me and with her I have been doing 24 hour urine free cortisol tests, midnight salivary cortisol tests, dexamethasone suppression tests, ACTH blood tests, etc. My cortisol ranges anywhere from 3x the upper limit of normal to in range. It was determined that I meet the diagnostic criteria for Cushing's Syndrome....but I don't look anything like a Cushing's patient. I could have it and be an atypical presentation, but I'm leaning towards it being pseudo Cushing's or a different type of cortisol issue that is not Cushing's at all and is not being caused by a tumor. I still am testing with this doctor and also with my second opinion doctor at Weill-Cornell also in Manhattan. With that doctor I will soon be doing a test call the DDAVP stim test to try to determine if this is a case of cyclical pituitary cushing's or pseudo cushing's. (FYI - high cortisol and Cushing's causes hair loss, but I'm sure most of you all know that with the research being done linking cortisol to hair loss). In Cushing's however, once the cortisol is regulated, the hair returns. I would never have believed it, but I've seen the photos from women and men in my Cushing's support groups. I even met a new friend who lives right near me and she had her pituitary surgery in April of this year, her hair is all growing back.
I believe that my HPA axis is off-kilter. I'm not so certain this is from a tumor, but more a problem that may have started in utero. I have a very early history of OCD, anxiety, and dysthymia. Eventually developed body dysmorphic disorder and mild eating disordered tendencies alternating between restrictive eating and binge eating. I don't know where these issues stem from and there is the belief in the Cushing's community that many cyclical patients have had tiny pituitary tumors since birth, thus explaining their issues. Oh yeah, tumors that cause Cushing's can be too tiny to show up on MRI, about 48% are missed and a procedure called IPSS is required. However IPSS can be misinterpreted as pituitary based if there is not an ectopic tumor and I have noticed a string of failed pituitary surgeries where no tumor is ever located.
One theory out there is that cortisol issues can be developed in utero if the mother uses steroids to treat an illness or from a natural rise in cortisol. In my case, my mother experienced the death of her father in the third trimester, research shows in mice that damage from excess cortisol is heightened in the third trimester. I do not regulate stress well and my cortisol shows it. Fetus's that are exposed to excess cortisol are known to develop anxiety disorders as well, which throw off the HPA axis.
I believe many people are suffering with high cortisol issues and not in the sense of "adrenal fatigue", but more along the lines of the connection between the mind and the endocrine system. Cortisol is not a frequently run test, we do not have a wide enough baseline to determine the levels in the general population. Who knows how many psych patients have issues with cortisol regulation? We aren't walking out of the GP or psychiatrist office with lab slips for cortisol along with our CBC and metabolic panels. It just doesn't happen. There is hardly any research in this area when compared to what we know in regards to other more common health issues.
The endocrine system is linked with our mental health, most top notch endocrinologists know this, we just don't have all of the knowledge yet on how to integrate the two. This is why there are more and more people being diagnosed with type 2 diabetes with zero family history and these people are not obese. It is chronic stress. I'm currently reading a book that touches on this topic, how the HPA axis can be thrown out of whack from trauma. The book is "The Body Keeps The Score". It touches on PTSD and cortisol regulation issues.
Before my high cortisol and hair thinning began, I developed PTSD like issues stemming from being mugged at knifepoint and then a month afterwards being hit by a messenger bike in the city and left unconscious by the side of the road. Symptoms got worse when a young coworker unexpectedly died and going through an awful on and off relationship with a man I believe to be a narcissist and who also turned out to be schizophrenic. This was my boyfriend up until recently, when I got sick and started losing hair, I totally had a major embarrassing freak out. Like, I was hysterical. Nuts. He bailed. I get it, I was hard to deal with, but it still hurts because I did really love him and thought we were going to be there for each other, in the way I stood by him through a schizophrenia diagnosis. Oh well.
I believe there are different forms of Androgenetic Alopecia. I find a lot of women in my hair loss groups who develop an unusual pattern of hair loss, similar to mine. A mixture of male pattern balding, DUPA, retrograde, nightmare hair loss. I do not have high androgens and neither do many of these women. They are told is is just genetic, but many, myself included, do not have family history of hair loss. Many women I've talked with have chronic stress issues, psych issues they are afraid to treat because they are afraid to take meds or afraid anti-depressants will worsen hair loss, they have traumatic pasts, suffered abuse, etc. I, personally, see a link.
My dheas has never been caught out of range and I consistently have normal to low-normal free and bio T. However, cortisol and dheas work together. When ACTH signals the adrenals to release cortisol, dheas is also released. We have cortisol receptors in our brain, dhea helps to protect our brain. Overexposure of cortisol can cause the brain to shrink over time, similar to the way anti-psychotics will shrink the brain with prolonged use. Dhea helps to protect the brain. Any time my cortisol is high, my dheas shoots up. Dheas is a precursor hormone, it converts to estrogen and testosterone. I don't have pcos so my liver produces more SHBG to soak up the excess T, which is why I will have high total T but normal free and bio T. The high cortisol is causing my hair loss. I just need to figure out a way to regulate it.
Whenever I take the dexamethasone suppression test, I usually feel great. For those who don't know, the dex suppression test is when you take 1 mg of the steroid dexamethasone, it is basically synthetic cortisol. In healthy individuals, taking this steroid will tell your pituitary to stop sending ACTH signals to the adrenals for the release of cortisol. The body knows it has enough of this steroid from the medication and there is no need to produce more. In someone with Cushing's from a tumor, they will not suppress cortisol or acth, the dex will just add to their cortisol and it will rise even higher. I have suppressed on this test. I took it again this morning, but do not have results yet.
If I suppressed again, yet have high cortisol on my labs before taking the dex, I want to propose an experimental treatment plan to my doctor. I'm going to start a psych med to help with my OCD and anxiety issues as I have never tried any medical treatments yet despite suffering since I was a child. I'm going to do a gene test first to determine if any types of psych meds are kind of off limits for me, like SSRI's. Once I have an idea of what will be best suited for me, I want to see about taking a very small tiny dose of dexamethasone to work in combo with the psych med.
Dexamethasone is the line of treatment for women suffering with late onset congenital adrenal hyperplasia, I don't have this but there are similarities between this and cortisol regulation issues. For example, fetus's exposed to higher levels of cortisol are found to enter puberty prematurely. I had my first period when I barely turned 10, also developed pubic and armpit hair at a younger than normal age and had breasts develop earlier as well. I believe if I can reset my hpa axis with the help of the dexamethasone, I might be able to solve my cortisol issue and thus my hair loss. I have a friend who's son was tested for Cushing's and does not have it, but does have cortisol regulation issues as well. She has her son on a very low dose of dexamethasone and it is helping, she took her son to NIH and they are the ones who approved the idea to trial treat with dex. Oddly enough, when chatting with her tonight, I mentioned why can't they just give me dexamethasone and I'm thinking about asking for an Rx and she told me her son was on it for the same reasons! If cortisol is the true root cause of my hair loss and my hair loss pattern follows what is seen in Cushing's patients and I technically have the diagnosis of Cushing's Syndrome, I see no reason why it can't regrow, even if just a little, and stop falling out once I regulate my high cortisol.
Of course one cannot take doses of dexamethasone forever, it will only cause more issues and you certainly don't want to run into the issue of having your adrenals atrophy, but my experiment would be to run a trial for a set period of time, I don't intend to stay on the dex. I hope with time the HPA axis can re-balance itself and I can come off the dex.
Apologies for the long post, I'm just sharing my story and journey and also hoping I can meet others with similar stories and backgrounds. I do know that sometimes Androgenetic Alopecia is just an expressed gene that you have and I do realize I can also have this gene and the cortisol issue is only speeding up the process, but there is zero family history of hair loss in my immediate family and extended family. No trace of female hair loss in anyone, not my mother, sister, grandmothers, aunts, cousins, second cousins, great grandmothers and aunts. Also most of the males in my family have hair. It doesn't add up. The high cortisol, the hair loss, the glucose issues, all of my other weird symptoms, and of course all of my pre-existing psych issues. There is a link. Other women with unexplained hair loss, normal androgens, no family history, etc. may not have the drive to keep pushing to find that root cause (at least in my observation they all seem to just move on and accept it) but I am losing my quality of life. Not only because I am losing hair, but I can't even eat the foods I enjoy anymore, I don't even have a sex drive, my muscles are wasting away! Something is WRONG.
Oh yeah, and when I take the dexamethasone, my hair stops shedding! Here are some pics of my hair. I used to have beautiful thick hair and I always took care of it and always had long hair down to my lower back my entire life. It was super healthy and normal up until the development of the above symptoms.
I also use women's 5% rogaine, but only started recently after giving up on the spironolactone (which will never work for me because it is an androgen blocker....but I don't have high androgens). Also, I stopped the birth control pill back in June to do proper cortisol testing, I was only on the pill from April-June, for the first time in my life. Never needed it before as I had normal cycles and no signs of hair loss or androgen excess.
The entire sides of my hair and temples have receded, and have literally got this bad in a matter of months. When I posted photos on here back in May, I was told no one would ever notice my loss, it's only gotten worse since. I do have some areas of what looks like regrowth and I do have some hairs sprouting up all over my head nut not that much considering how much hair I lost. I lost like 70% of my hair's density. My hair thinned diffusely, but the entire hairline is receding. I also see a hair specialist, he is waiting to see how my cortisol issues play out before jumping to any conclusions. If this never resolves, I wish I could get a hair transplant from him, but like I said, I'm thinning diffusely so that would mean no donor area. Also, my center part and bangs are all still intact though, which is why for a long time doctors insisted I wasn't losing hair as most women lose it in those spots.
FYI, I am a woman. To be honest I find reading the men’s hair loss forums to sometimes be a little more useful than the women’s. I am part of a group on FB for female hair loss, it mostly centers around wigs, toppers, why me posts, and blind acceptance of Androgenetic Alopecia without digging deeper when things just simply don’t add up. I find the men’s groups sometimes are more up to date on research and also think more outside the box when it comes to unusual hair loss. So, I hope you all don’t mind a female here. Apologies if I'm overstepping any boundaries.
I have posted before on these boards earlier in the year. My journey is a weird one. It started a few years back and unrelated to hair loss. It may have started at the very beginning of my existence, in utero, but we'll get to that later. I started developing some unusual symptoms and blew them off as job burnout, depression, chronic stress, you get the idea. Depression, lethargy, increased anxiety, hypervigilance, sleep disturbances (middle of night awakenings and constant REM stage), zero libido, hyperhidrosis, intermittent muscle and bone pain, mood swings, rage episodes and irritability, body composition changes, night sweats, hot flashes, chronic headaches and migraines, fatigue, weight gain, and...wait for it...thinning hair. These were my symptoms in a nutshell, I literally have a four page list. They sound very vague and could be suggestive of many things. For years I went to various doctors with my complaints only to find all labs are normal and no one believed my hair was thinning. No thyroid issues, no nothing.
Fast forward to 2017, sick and tired of gaining weight and losing hair (never was considered that overweight, I started out skinny but gained around 30 lbs) I became convinced I had signs of early perimenopause. All my symptoms seemed to align, except for, you know, being like 29 at the time. I went to my gynecologist and asked for hormone testing. She kind of half-assed cherry picked what tests to run, which was dumb on her part, but overall everything came back normal, except for my total testosterone however my free testosterone, which is what effects your tissues was normal and in range. I was found to have high prolactin, but only mildly so and on the retest it came back into range. Told nothing was wrong.
Eventually went to an endocrinologist because I kept getting worse and I was planning to start trying for a baby so I wanted to sort some issues out and check my prolactin again. Prolactin was high again so I was booked for a pituitary MRI since it could be caused by a benign pituitary tumor called a prolactinoma. Before my MRI, I took a vacation in January 2018, but caught the flu and was very sick with a high fever. Came back and took a month to fully get over the flu, which was odd for me. March comes along and all of my headaches, rage issues, hot flashes, etc. are way worse and then my hair started falling out. Now, it was thinning on the sides of my head from around at least 2016-present time, but this was just wads and clumps of hair falling out. See a derm, who tells me Telogen Effluvium from the flu I had two months back and the sides may be unrelated and possible early Androgenetic Alopecia. Had my MRI, it came back clear.
More hormone tests, all continue to show normal free and bioavailable testosterone but borderline and high total testosterone. High-normal to high out of range sex hormone binding globulin, this is the opposite feature of PCOS, women with PCOS have low SHBG and high free and bioavailable T. My DHEA-S was in range and aside from prolactin, nothing was out of the ordinary. My A1C and fasting glucose were perfect and also my fasting insulin. I wasn't getting any answers from this endo so I decided to see a reproductive endo. He told me right off the bat, PCOS, even without running his own labs. At this point I noticed my hairline was receding and my temples were balding. I accepted the pcos diagnosis blindly and was referred for a two hour oral glucose test. I bombed it, I was diagnosed insulin resistant and pre-diabetic. This is odd. No one in my immediate or extended family have diabetic issues and also no one in my family history either. I was also losing weight at this point and was being accused of anorexia from doctors, which was not true. I now weigh 100 lbs, which is my old weight and I was able to get back here easily after cutting out sugar and carbs and eating low GI foods. I'm 5'0, so I'm very short. 100 lbs is totally normal for my build, which is why I was so upset at 136 lbs.
Despite doing everything they tell pcos women to do, nothing helped. I was put on low androgen birth control, metformin that I had to stop because it made me sick, spironolactone 150 mg. I was doing strength training with a personal trainer and only eating low GI. Hair was still falling out in clumps and receding. I joined a Reddit sub for pcos and no one there had any of my other symptoms. It was around then that I also started developing more body hair, not hirsutism style but more like hypertrichosis. It was like all the blonde vellus hair all over my body just increased and grew crazy long, I used to be virtually hairless before. I started freaking out that I had something worse than pcos after googling sudden hair increase late in life and the pop-up noted adrenal cancer. I had ask my old endo to test cortisol because I had suspected Cushing's Syndrome in the past when I started getting my odd symptoms and she told me I didn't look cushingoid, but it does take year to take on the appearance so she gave me an AM cortisol blood test. I was borderline. She gave me a 24 hour urine, I was again borderline. She ran another blood and again, borderline. She eventually told me to forget it and that I was the most anxious and stressed patient she had ever had and I needed psych help. I pushed for an abdominal ct scan to check my adrenals and that was normal.
At this point I was getting severely sick. Was getting unexplained diabetic glucose readings some days, but normal readings on others eating the same foods. I developed hypoglycemia episodes, got cellulitis in my ear that took two heavy antibiotics to cure, developed severe muscle and bone pain from around June-August that never left me and I could hardly walk, rapid tachycardia for no reason, my heart rate resting would be at times 160! I developed hypertension as well. Lots of issues going on with no explanation. I had my primary care doctor run my cortisol and dheas again and both jumped way up. My cortisol was over 2x the upper limit of normal, dheas was still in range but jumped almost 200 points. I was getting weird white blood cell readings too, of high neutrophils and low lymphocytes, also immature granulocytes in my blood. Saw a hematologist a few times, no blood cancers, no lymphoma. Still losing hair and devastated.
I faxed my results to an endocrinologist who specializes in Cushing's at Memorial Sloan Kettering. She accepted me and with her I have been doing 24 hour urine free cortisol tests, midnight salivary cortisol tests, dexamethasone suppression tests, ACTH blood tests, etc. My cortisol ranges anywhere from 3x the upper limit of normal to in range. It was determined that I meet the diagnostic criteria for Cushing's Syndrome....but I don't look anything like a Cushing's patient. I could have it and be an atypical presentation, but I'm leaning towards it being pseudo Cushing's or a different type of cortisol issue that is not Cushing's at all and is not being caused by a tumor. I still am testing with this doctor and also with my second opinion doctor at Weill-Cornell also in Manhattan. With that doctor I will soon be doing a test call the DDAVP stim test to try to determine if this is a case of cyclical pituitary cushing's or pseudo cushing's. (FYI - high cortisol and Cushing's causes hair loss, but I'm sure most of you all know that with the research being done linking cortisol to hair loss). In Cushing's however, once the cortisol is regulated, the hair returns. I would never have believed it, but I've seen the photos from women and men in my Cushing's support groups. I even met a new friend who lives right near me and she had her pituitary surgery in April of this year, her hair is all growing back.
I believe that my HPA axis is off-kilter. I'm not so certain this is from a tumor, but more a problem that may have started in utero. I have a very early history of OCD, anxiety, and dysthymia. Eventually developed body dysmorphic disorder and mild eating disordered tendencies alternating between restrictive eating and binge eating. I don't know where these issues stem from and there is the belief in the Cushing's community that many cyclical patients have had tiny pituitary tumors since birth, thus explaining their issues. Oh yeah, tumors that cause Cushing's can be too tiny to show up on MRI, about 48% are missed and a procedure called IPSS is required. However IPSS can be misinterpreted as pituitary based if there is not an ectopic tumor and I have noticed a string of failed pituitary surgeries where no tumor is ever located.
One theory out there is that cortisol issues can be developed in utero if the mother uses steroids to treat an illness or from a natural rise in cortisol. In my case, my mother experienced the death of her father in the third trimester, research shows in mice that damage from excess cortisol is heightened in the third trimester. I do not regulate stress well and my cortisol shows it. Fetus's that are exposed to excess cortisol are known to develop anxiety disorders as well, which throw off the HPA axis.
I believe many people are suffering with high cortisol issues and not in the sense of "adrenal fatigue", but more along the lines of the connection between the mind and the endocrine system. Cortisol is not a frequently run test, we do not have a wide enough baseline to determine the levels in the general population. Who knows how many psych patients have issues with cortisol regulation? We aren't walking out of the GP or psychiatrist office with lab slips for cortisol along with our CBC and metabolic panels. It just doesn't happen. There is hardly any research in this area when compared to what we know in regards to other more common health issues.
The endocrine system is linked with our mental health, most top notch endocrinologists know this, we just don't have all of the knowledge yet on how to integrate the two. This is why there are more and more people being diagnosed with type 2 diabetes with zero family history and these people are not obese. It is chronic stress. I'm currently reading a book that touches on this topic, how the HPA axis can be thrown out of whack from trauma. The book is "The Body Keeps The Score". It touches on PTSD and cortisol regulation issues.
Before my high cortisol and hair thinning began, I developed PTSD like issues stemming from being mugged at knifepoint and then a month afterwards being hit by a messenger bike in the city and left unconscious by the side of the road. Symptoms got worse when a young coworker unexpectedly died and going through an awful on and off relationship with a man I believe to be a narcissist and who also turned out to be schizophrenic. This was my boyfriend up until recently, when I got sick and started losing hair, I totally had a major embarrassing freak out. Like, I was hysterical. Nuts. He bailed. I get it, I was hard to deal with, but it still hurts because I did really love him and thought we were going to be there for each other, in the way I stood by him through a schizophrenia diagnosis. Oh well.
I believe there are different forms of Androgenetic Alopecia. I find a lot of women in my hair loss groups who develop an unusual pattern of hair loss, similar to mine. A mixture of male pattern balding, DUPA, retrograde, nightmare hair loss. I do not have high androgens and neither do many of these women. They are told is is just genetic, but many, myself included, do not have family history of hair loss. Many women I've talked with have chronic stress issues, psych issues they are afraid to treat because they are afraid to take meds or afraid anti-depressants will worsen hair loss, they have traumatic pasts, suffered abuse, etc. I, personally, see a link.
My dheas has never been caught out of range and I consistently have normal to low-normal free and bio T. However, cortisol and dheas work together. When ACTH signals the adrenals to release cortisol, dheas is also released. We have cortisol receptors in our brain, dhea helps to protect our brain. Overexposure of cortisol can cause the brain to shrink over time, similar to the way anti-psychotics will shrink the brain with prolonged use. Dhea helps to protect the brain. Any time my cortisol is high, my dheas shoots up. Dheas is a precursor hormone, it converts to estrogen and testosterone. I don't have pcos so my liver produces more SHBG to soak up the excess T, which is why I will have high total T but normal free and bio T. The high cortisol is causing my hair loss. I just need to figure out a way to regulate it.
Whenever I take the dexamethasone suppression test, I usually feel great. For those who don't know, the dex suppression test is when you take 1 mg of the steroid dexamethasone, it is basically synthetic cortisol. In healthy individuals, taking this steroid will tell your pituitary to stop sending ACTH signals to the adrenals for the release of cortisol. The body knows it has enough of this steroid from the medication and there is no need to produce more. In someone with Cushing's from a tumor, they will not suppress cortisol or acth, the dex will just add to their cortisol and it will rise even higher. I have suppressed on this test. I took it again this morning, but do not have results yet.
If I suppressed again, yet have high cortisol on my labs before taking the dex, I want to propose an experimental treatment plan to my doctor. I'm going to start a psych med to help with my OCD and anxiety issues as I have never tried any medical treatments yet despite suffering since I was a child. I'm going to do a gene test first to determine if any types of psych meds are kind of off limits for me, like SSRI's. Once I have an idea of what will be best suited for me, I want to see about taking a very small tiny dose of dexamethasone to work in combo with the psych med.
Dexamethasone is the line of treatment for women suffering with late onset congenital adrenal hyperplasia, I don't have this but there are similarities between this and cortisol regulation issues. For example, fetus's exposed to higher levels of cortisol are found to enter puberty prematurely. I had my first period when I barely turned 10, also developed pubic and armpit hair at a younger than normal age and had breasts develop earlier as well. I believe if I can reset my hpa axis with the help of the dexamethasone, I might be able to solve my cortisol issue and thus my hair loss. I have a friend who's son was tested for Cushing's and does not have it, but does have cortisol regulation issues as well. She has her son on a very low dose of dexamethasone and it is helping, she took her son to NIH and they are the ones who approved the idea to trial treat with dex. Oddly enough, when chatting with her tonight, I mentioned why can't they just give me dexamethasone and I'm thinking about asking for an Rx and she told me her son was on it for the same reasons! If cortisol is the true root cause of my hair loss and my hair loss pattern follows what is seen in Cushing's patients and I technically have the diagnosis of Cushing's Syndrome, I see no reason why it can't regrow, even if just a little, and stop falling out once I regulate my high cortisol.
Of course one cannot take doses of dexamethasone forever, it will only cause more issues and you certainly don't want to run into the issue of having your adrenals atrophy, but my experiment would be to run a trial for a set period of time, I don't intend to stay on the dex. I hope with time the HPA axis can re-balance itself and I can come off the dex.
Apologies for the long post, I'm just sharing my story and journey and also hoping I can meet others with similar stories and backgrounds. I do know that sometimes Androgenetic Alopecia is just an expressed gene that you have and I do realize I can also have this gene and the cortisol issue is only speeding up the process, but there is zero family history of hair loss in my immediate family and extended family. No trace of female hair loss in anyone, not my mother, sister, grandmothers, aunts, cousins, second cousins, great grandmothers and aunts. Also most of the males in my family have hair. It doesn't add up. The high cortisol, the hair loss, the glucose issues, all of my other weird symptoms, and of course all of my pre-existing psych issues. There is a link. Other women with unexplained hair loss, normal androgens, no family history, etc. may not have the drive to keep pushing to find that root cause (at least in my observation they all seem to just move on and accept it) but I am losing my quality of life. Not only because I am losing hair, but I can't even eat the foods I enjoy anymore, I don't even have a sex drive, my muscles are wasting away! Something is WRONG.
Oh yeah, and when I take the dexamethasone, my hair stops shedding! Here are some pics of my hair. I used to have beautiful thick hair and I always took care of it and always had long hair down to my lower back my entire life. It was super healthy and normal up until the development of the above symptoms.
I also use women's 5% rogaine, but only started recently after giving up on the spironolactone (which will never work for me because it is an androgen blocker....but I don't have high androgens). Also, I stopped the birth control pill back in June to do proper cortisol testing, I was only on the pill from April-June, for the first time in my life. Never needed it before as I had normal cycles and no signs of hair loss or androgen excess.
The entire sides of my hair and temples have receded, and have literally got this bad in a matter of months. When I posted photos on here back in May, I was told no one would ever notice my loss, it's only gotten worse since. I do have some areas of what looks like regrowth and I do have some hairs sprouting up all over my head nut not that much considering how much hair I lost. I lost like 70% of my hair's density. My hair thinned diffusely, but the entire hairline is receding. I also see a hair specialist, he is waiting to see how my cortisol issues play out before jumping to any conclusions. If this never resolves, I wish I could get a hair transplant from him, but like I said, I'm thinning diffusely so that would mean no donor area. Also, my center part and bangs are all still intact though, which is why for a long time doctors insisted I wasn't losing hair as most women lose it in those spots.
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