Hello, my name is Rachel, and I am 31, will be 32 in 2 weeks.
I have been suffering from this medical condition, which I believe to be Cushing’s Syndrome, Adrenal Fatigue, or Pheochromocytoma, or maybe a mixture of all 3. I have had this for around 16 years, maybe longer, as I have had the classic “buffalo hump” on the back of my neck since I was 9 years old and have always had trouble with my weight. I have been on many diets since mid-childhood.
When I was around 13, I discovered a weight loss supplement, which I diligently took and lost 20 pounds over a 2-year period. I felt the best I have ever felt my entire life. I eventually had to stop taking it, though, due to not being allowed to bring any meds or supplements to my high school. I was not totally thin, but I looked pretty good. But during that first year of high school, my insomnia returned, and the rest of my symptoms started to emerge.
Autumn 1999 (when I was 14): I started getting daily headaches. Sometimes, they were minor, where I could ignore them, and other times they were so debilitating that I had to miss school. Because I wasn’t allowed to bring medication to school, I had to take Ibuprofen every morning as a preventative.
Autumn 2000: I suddenly gained 20 pounds in one month without changing anything in my diet. The fat was especially much around my face, neck, and torso.
Spring 2001: I developed fatigue, loss of concentration or “spacey-ness”, and being easily physically and mentally drained. I lost contact with many of my neighborhood friends, since I avoided lengthy times spent with them, and sometimes wouldn’t be when them at all because of not having enough energy.
Autumn 2001: Thinking I had hypothyroidism, I had my first doctor’s appointment over these symptoms, especially of the weight gain that was getting worse. Nothing showed up in tests, and the doctor wanted to put me on a 900 calorie diet. I never went back.
Summer 2002: My menstrual cycles became irregular, skipping sometimes 2 or 3 months at a time. Finally, they stopped altogether. I also gained another 20 pounds that upcoming school semester (16 weeks).
Summer 2003: I went to another doctor. She put me on birth control pills to get my menstrual cycles back. It helped a little, but they were very light with severe cramping. I gained an additional 20 pounds from the birth control pills and did not feel good. Once I got off of them, my menstruation stopped again, and I never lost those 20 pounds.
Autumn 2003: I went to another doctor from the University of Chicago. He tested various hormones and found that my androgen levels (mainly testosterone) were so high that it was off the charts. He thought that I might have Polycystic Ovarian Syndrome, so he entered me in several studies he was conducting for people with PCOS. I was given several test medications and had more tests done testing insulin resistance, glucose tolerance, and other things. Nothing came up positive. During that time, I also had an ultrasound done on my ovaries to check for cysts. Nothing showed up. After other tests were done, he concluded that I did not have PCOS, and that I might actually have Cushing’s Syndrome. I couldn’t go back to him, though, as his regular appointments without the studies were really costly. This whole time of the studies lasted till summer of 2004.
I also gained an additional 30 pounds during this time.
>My symptoms of fatigue and loss of concentration continued to worsen, so I had to become a part time student to avoid exhaustion with classes. I felt my worst usually starting around 1 or 2pm, and lasting till around 5pm.
Summer 2005: Diarrhea started abruptly and has been continuing ever since. A year later, I had discovered that caffeine could cause it, so I got off of all caffeine, which alleviated it for a few months. However, it returned shortly after, blossoming into 3 different kinds and becoming worse and more frequent over the years. I used to have it only at night, but now, I have it in the morning as well, and some at night, and sometimes some in the afternoon. I can have even 5 or more bouts of it a day, which makes it difficult for me in any public place. It slows me down in the mornings (as I sometimes have to spend an hour in the restroom) and often makes me late for things.
2006-2010: I have gone to many doctors over this time, each one testing my cortisol, TSH, T3 and T4, testosterone, DHEA, progesterone, and insulin levels, and each one coming up with nothing abnormal except high testosterone.
Spring 2009: I developed a candida skin infection that has been reoccurring since then. Antifungals do not take it away, only antibiotic ointments. However, even the antibiotic ointments do not take it completely away, as it keeps reoccurring and showing discoloration in spots where it had been previously.
Spring 2010: Episodes of light-headedness, shortness of breath, and rapid heart rate started appearing, ranging anywhere from 5 minutes to an hour in duration. They would come completely at random, sometimes 3 or more times a week, and sometimes not for several months.
2011: I developed slow motility, where it takes hours for my meals to digest. This made it hard for me to get to bed at a normal bedtime like 10pm, since I couldn’t lie down without getting horribly nauseous. This also affected my diarrhea, making it where I have to push to make it come out, since my intestines do not contract much to squeeze it out or they contract very slowly.
Summer and Autumn 2011: I went to 2 doctors in New York who also tested my cortisol levels and catecholamine levels to test for pheocromocytoma, which all came out normal. I also had an MRI done on my brain to check for growths on my pituitary gland. Nothing showed up with that, either. I also went to Mayo Clinic in Rochester, MN. My results in those tests also were all normal, and no diagnosis was made.
Spring 2012: My menstruation returned to regular monthly cycles.
Winter/Spring 2013: I suddenly started to become sensitive to cold, so winter became almost unbearable for me. This cold sensitivity has been increasing every year thereafter. Even temperatures in the 60-degree Fahrenheit range make me feel chilled and forced me to dress in double and triple layers of clothing.
Also, around this time, my fatigue reached a new level of severity, making my “dead” time duration between 12pm-6pm.
Spring 2014: My menstrual cycles suddenly changed again, where I had constant menstruation for over 3 months.
2015: My fatigue, again, worsened, making me so tired that I could fall asleep throughout the afternoon and most of the evening. This extreme tiredness would come especially shortly after I would eat a meal, particularly in the midday. This made studying for my classes very difficult and time consuming, since I was so slow.
I also started to notice I could feel a small lump on my upper left side, just below my ribcage. This lump started out the size of a golf ball and has increased to the size of a baseball. It makes me feel nauseous if it’s pressed on with little pressure and hurts when it’s pressed on hard.
My menstrual cycles became irregular again and have stayed that way ever since.
Spring 2016: After getting nowhere with endocrinologists, I went to see a gastroenterologist because of my diarrhea and lump. A CAT scan was done of my abdominal area showing nothing abnormal. In fact, the space where the lump should be in the pictures just shows empty blackness, no organs or growths whatsoever.
Over the course of these years, I have done a lot of my own research and have noticed that my symptoms all match 3 possible conditions: Cushing’s Syndrome, Adrenal Fatigue, and Pheocromocytoma. I am wondering if all these three conditions can coexist in the same body. I know that Cushing’s results from a growth on either the pituitary gland or the adrenal cortex of the adrenal gland, making the adrenal gland produce too much cortisol.
I also know that pheocromocytoma results from a growth on the medulla of the adrenal gland, producing high levels of catecholamines, which, for some reason, does not always show up in a blood test. And I know that adrenal fatigue results when the adrenal glands become exhausted from constantly producing high levels of cortisol during stress that lasts over a long period of time, so they don’t produce enough. So could it be that I have a growth on one of my adrenal glands that extends from the adrenal cortex into the adrenal medulla, causing the symptoms of Cushing’s and pheocromocytoma, while my other adrenal gland has adrenal fatigue? That would make sense why nothing shows up on the tests, because one adrenal gland is producing too much cortisol, and the other is not producing enough. So the two would cancel each other out, yet I could still experience symptoms.
I have gone to 12 doctors over these 16 years, and not a one has ever come up with a diagnosis or even cared about investigating the cause. They resist doing further testing and evaluating, because nothing shows up in the initial blood and urine tests. They don’t even believe me and think that it must be depression or that I am just making it all up. I have been criticized, rebuked, and laughed at by them. I even had a doctor chuckle as he told me, “You better get your periods back or you could get cancer of the uterus”. I have run out of doctors and have basically given up hope.
So where I am right now, spring 2017: My symptoms have gotten so bad that I am almost debilitated. Every day, I always wake up feeling just as tired as I did the night before. No matter how much sleep I get, I do not feel rejuvenated whatsoever. This makes it impossible for me to get up before noon, so often times, I am just eating breakfast/lunch around 3 or 4 o’clock in the afternoon. I have no energy all day long, and the fatigue makes me unable to do much of anything during the times I am awake. Most of the time, I feel like I am moving in slow motion, because time seems to pass by so quickly. I have to take frequent breaks from mental or physical tasks just to regain some strength and energy. I try to avoid social events, as I don’t have the energy to be with people and get easily stressed and drained. So I am alone much of the time. I can only take one class per semester in college now, as I don’t have enough energy to study.
I have acquired muscle weakness in my arms, hands and legs, that makes it incredibly difficult, and sometimes painful, to go up and down stairs, along with doing the process of going from sitting to standing or vise-versa. I appear as “lazy” since I can’t even get up from my chair to get something that is just a few feet away from me. The muscle weakness in my arms and hands makes it difficult to even do handwriting.
My memory if often foggy, also making studying difficult, as I can’t remember what I am reading. Many times, if a friend asks me what I have done during the last few days, I can’t remember. I can experience a fun event, and I still will forget and have to force myself to think about what it was. I feel like in a fog all day.
Almost every day, I will wake up with a headache, or I will get one over the course of the day. I have to take painkillers, such as Alleve, everyday just to keep my headaches under control. And sometimes, my headaches are so bad that they debilitate me. With those kinds of headaches, taking up to 12 Alleve in one day will not take them away.
Painful diarrhea keeps me in the restroom sometimes up to an hour or longer with each bout. I have to eat my evening meal earlier and earlier, so I don’t have to sit up late waiting for it to digest. I even have to keep from lying down for over an hour after drinking just water.
My immune system is also impaired, so I can get sick easily and have reoccurring candida infections. Colds and the flu hit me hard, often debilitating me for weeks. I take vitamin D3 to enhance my immune system to not get sick as often, since I have to ride the train and bus going to and from school. I have also acquired more allergies over these years. My nose has gotten really sensitive to perfumes and fragrances. I never used to be allergic to animals, but now, I can’t even go into a house that has pets without getting a bad sore throat and runny nose for 3 days after. And in general, I have noticed my lungs and nasal passages are producing more mucous, so I have to keep coughing and blowing my nose frequently, or I get a sore throat.
My menstrual cycles are very light and almost non-existent. I haven’t had one since January, and it’s now the beginning of April.
I am now 100 pounds overweight and can’t lose it, even with the same weight loss supplement I took before my first year of high school. The majority of the fat is around my face, neck, and torso, with some now accumulating on my upper arms and upper legs and pale purple stretch marks on my belly and upper arms. I have the typical fat distribution and appearance of Cushing’s Syndrome.
I still get the episodes where I experience a rapid heart rate, light-headedness, and shortness of breath. During those times, I have to breathe harder and just stop whatever I am doing. I have even almost felt like passing out at times.
I will be graduating in 4 weeks and am very afraid, as I don’t know how I will handle the stress and demands of a full time job, especially if I have to interact with people. I have very few friends, and half of my own family doesn’t believe me when I talk about my condition. I feel ugly and boring and have become very depressed. Is there ANYONE IN THE WORLD who will help me??? I hope someone (like a doctor perhaps) will read this bio of mine, and have compassion in their heart and be eager to help me.
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Apr 09, 2017 @ 04:24:02
Have you ever had your 11-deoxycortisol levels checked? Also, I’ve been told for blood tests, not sure which this applies to as it may not be all endocrine hormone tests, but that you should be tested on the third day you are menstruating, early morning before 9am and fasting. Have you done that?
Apr 09, 2017 @ 04:41:53
Have you ever had your 11-deoxycortisol levels checked? Also, I’ve been told for blood tests, not sure which this applies to as it may not be all endocrine hormone tests, but that you should be tested on the third day you are menstruating, early morning before 9am and fasting. Have you had your prolactin levels checked? Also, you said you had glucose tolerance test done was it the 5 hour glucose tolerance test and were both glucose and insulin levels checked? You mentioned you had an M.R.I. of your brain, did you happen to have a pituitary M.R.I. (which is different and would better focus on the pituitary)? ACTH blood test? ACTH stimulation test? Have you had a workup for Cushing’s at all (24 hour UFC, low dose dexamethasone suppresion test, and midnight salivary cortisol)? I am not a physician, a patient on my own medical journey who has learned a lot along the way and is still continuing to learn.
Apr 17, 2017 @ 23:05:16
Hi Sprout,
Wow, you have done alot of research. Yes, I have had all of the tests you mentioned, prolactin, ACTH, three 24 urine tests checking my 11-dioxycortisol levels, a 24 hr saliva test, 3 glucose tests, insulin resistance test, dexamethasone, pituitary MRI, and many other tests that I listed in my bio. They all came out negative. The dexamethasone test was the last test done at the University of Chicago. Yes, the MRI was of the pituitary gland, which there was no growth on it at all. The glucose tests were the 5 hour and an 8 hour one, and the insulin levels were checked with them. With all these tests, nothing abnormal showed up. I guess you can see why doctors would give up on me.
Thank you, though, for your input. I appreciate it that you care to get involved. 🙂
Apr 17, 2017 @ 23:12:54
Hi Sprout,
Wow, you have done alot of research. Yes, I have had all of the tests you mentioned, prolactin, ACTH, three 24 urine tests checking my 11-dioxycortisol levels, a 24 hr saliva test, 3 glucose tests, insulin resistance test, dexamethasone, pituitary MRI, and many other tests that I listed in my bio. They all came out negative. The dexamethasone test was the last test done at the University of Chicago. Yes, the MRI was of the pituitary gland, which there was no growth on it at all. The glucose tests were the 5 hour and an 8 hour one, and the insulin levels were checked with them. That is interesting about doing the testing the 3rd day after menstruating. With me, though, my menstruation stopped, so I lost touch with my cycles schedule. Every blood test I have ever had has always been in the early morning, around 8 am, after a 12 hour fast. With all these tests, nothing abnormal showed up. I guess you can see why doctors would give up on me.
Thank you, though, for your input. I appreciate it that you care to get involved.
Apr 18, 2017 @ 15:40:47
Do you know where they send the labs? (I get told the gold standard is a specific lab out in California) When I personally have had my worst symptoms in the beginning of my medical journey all my tests came back normal. 4 years later and more problems, new lab work tested 3rd day menstruating, prior to 9am, and it painted a different picture. Don’t lose hope, I believe symptoms tell a larger picture than any blood test can provide. There is way more about the body that is unknown than known.
If you are willing to make the drive I can recommend an endocrinologist in Cleveland to you. I have seen several, including one in Chicago who worked at North Shore, who was extremely unhelpful. I have a lot of similar symptoms and I would be more than happy to explain to you what has helped me thus far, but that was not until my labs came back abnormal 4 years later.
The fatigue is a nightmare I don’t even think the word fatigue does what happens justice. My fatigue ( I call it Zombie status) has been assisted with helping out my adrenal glands, because I know at the very least I have an issue due to testing. My blood cortisol has always come back normal but my 11-deoxycortisol has always been elevated. Due to elevated 11-deoxycortisol I have had several ACTH stimulation tests done, to check for late onset non congenital adrenal hyperplasia (CAH), but my “mild” ( I assure you the term mild for numbers does not equate at all to how you feel), elevation in the stim test, does not support that diagnosis. I do not have a definitive diagnosis, but at least I have 2 endocrinologists who I trust and can work with and who know something is wrong. Having doctors who actually believe you is incredibly helpful and once your labs supports that, makes a difference.
To me it really sounds like you have a hormonal imbalance of some kind. I would like to note I find it interesting how many endocrinologists are resistant to Cushing’s or Pseudo-Cushings diagnosis given the fact “rapid” weight gain does not come up in the literature with many diagnoses. If you look at some literature they will tell you to get a PET M.R.I. (which I haven’t had) to look for tumors. Also, Pseudo-cushings they will argue to continuously test your salivary cortisol. Look for an endocrinologist who is willing to order the tests and willing to help. I would request a standing order for all blood tests and if your menses does return, get results the third day you are menstruating. Keep track of your symptoms is the best advice. Write down the time, feeling, etc you will find this useful for yourself and you will probably find a pattern, not necessarily that a Dr. will care about your data, but if you are looking to catch something significant in labs the timing I believe is important, since hormones fluctuate, especially women’s.
In regards to your constipation I have not found much that works. Chia seeds help, flaxseed and psyllium husk I personally do not love because they bloat me, I take CALM ( a form of magnesium that assists), and just recently started taking activated charcoal which has helped with my stomach issues. It’s hard to say if it’s medication or the charcoal because of the timing what is helping, but I am pretty sure the activated charcoal has helped. Also, I would recommend if you have gastrointestinal issues, reflux, anything of the sort take a probiotic. I have taken a probiotic for years and am now sure it does assist with my issues. I previously took a probiotic that was 20 billion CFUS but I have since found that the 50 billion CFUS is helping me much better. Not sure if I just became tolerant to the previous probiotic or I needed to bump up the amount of probiotics due to medication or what, but I do know my body responds. There are probiotics that have 100 or even 200 billion CFUS so there are options.
If you are not having luck with endocrinolgists some medical literature will tell you to either find a young endocrinologist or an old endocrinolgist that has seen everything. The argument is that the young endo. will do what it takes, and the argument for the oldest endo is they have the most experience, so they have probably had a patient like you. Also, most people will tell you private practice endocrinologists are not good with complicated cases. I will add you will probably get the advice to go to a hospital that has a dedicated pituitary center. I went to a Dr., who is a member of the PNA, and although she was nice, she was rather unhelpful. I believe the doctor rather than the place they work is more important. Plenty of world renowned this that and the other thing unwilling to help complicated cases. I often get told my labs are “unremarkable” and I assure you my symptoms are anything but that.
If you have any questions about my journey that would help feel free to reach out I would be more than happy to e-mail and share what has worked for me. My problems started in 2008 and I have had problems now for 9 years. I do not have a definitive diagnosis, but I have had a few things assist, and am currently feeling the best I have felt in years with my current “plan.” Good luck; don’t lose hope. Find an endocrinologist who is willing to help and believes you, a lot harder task than you would believe.
Apr 18, 2017 @ 16:18:04
I also wanted to mention that the first thing that really tipped everything off for me was that I also had elevated androgens. My testosterone was normal but my free testosterone and free testosterone % were elevated. Testosterone Free My value 19.9 Range 1-9; Testosterone Free % My value 3.4 Standard range 0.3-1.9%. I have been diagnosed with PCOS 3 times by 3 different doctors. PCOS is often a SHAM diagnosis for a bunch of symptoms they do not understand. I had plenty of symptoms before this elevation showed up. Male pattern baldness, hirsutism, irregular menses, etc. Also they continue to change the definition of PCOS and how you diagnose it, what seems to be every year. So don’t get stuck on the PCOS bullshit train, especially if you do not have cysts. Clearly there are a lot of women who have issues that have a strong relation to how PCOS is diagnosed (or used to be), but that do not have a diagnosis that FITS. I have been told by the endocrinologists (2) I trust, that I do not have PCOS.
2012=Androgen Excess Diagnosis, the elevated Testosterone % and elevated Free Testosterone, I at the time also had elevated Hydroxyprogesterone, elevated Prolactin, elevated ACTH, elevated 11-deoxycortisol, elevated androstenedione-all 4 years after my first symptoms, previous #1 symptom RAPID WEIGHT GAIN and no abnormal labs other than PCOS diagnosis claim of LH/FSH over 2 to 1 ratio.
I’ve been told my body has a higher level of ACTH to keep me normal I don’t have enough reserve of cortisol ( remember my blood cortisol always normal in range, 11-deoxycortisol elevated), so we supplement with corticosteroids. This will also have to do with the overproduction of weak male hormones (androgens aka testosterone, etc). The elevated prolactin (hyperprolactinemia) basically gets treated separately with a dopamine agonist agent.
Do you find stress difficult? Anxiety, irritability, etc.?
Other notes, make sure your Free T4 has been tested I know you said you had thyroid testing, but you have to be specific because you would be amazed how many people miss a test or haven’t had that test done correctly, at the right time, etc.
These are just some of my tests and abnormalities the amount of symptoms and different symptoms I have had along the way are much more vast. I think the symptoms paint a different picture than the “mildly” elevated labs. Unfortunately, I am not sure you can find a doctor that will treat you without abnormal labs unless you were to look into homeopathic/alternative medicine. Again good luck on your journey I hope you find relief.
Apr 18, 2017 @ 21:26:42
It sounds like you have been through a lot, too.
All of my tests were done through Quest Diagnostics, which I believe is nationwide.
In my bio, I mentioned basically all the tests I have had, including the ones I told you about, too, and it’s only my androgens that are high, particularly, the testosterone. The endocrinologist at the University of Chicago said my testosterone was so high it was off the charts. Other than that, nothing else was abnormal and fails to show up on any blood test. I believe that it is a hormone issue, too. You are correct; it is impossible to find a doctor who will help me without abnormal test results. That is why I put my bio on this site, in hopes that perhaps a doctor will look beyond the blood results and focus on my symptoms. I have been to 13 doctors (most in the Chicagoland area, 2 in New York, and one at Mayo Clinic in Rochester, MN) within these 16 years, and every one of them has told me there is nothing wrong with me and totally resisted giving me any MRI, claiming that we all have lumps and bumps inside us. The one doctor in New York only gave me the pituitary MRI as a “favor” to get me to stop complaining and to prove me wrong. I had a CAT scan done by a gastroenterologist of my abdominal area to check for the lump I feel on my mid left side under my ribcage. Only blackness showed up in the scan images where the lump is supposed to be located.
I don’t really have constipation all that often. It is diarrhea that I suffer with most. So I am afraid of probiotics, as I have tried stuff like that before, and they just rip through me. Thank you for the suggestion, though.
I have run out of doctors and am kind of at a standstill with it all. My symptoms (especially the fatigue, headaches, and diarrhea) are progressively getting worse week by week. Yes, I do agree with you that there needs to be a better word to describe more accurately the debilitating symptoms we experience. Fatigue doesn’t seem to cut it. I like your word “zombie state”. I do feel like I am living in a dream most of the time. Sometimes I can’t even think straight, and I am stumbling around in my mind. It is as if I am pulling all-nighters night after night and feel totally sleep deprived, even though I get plenty of sleep.
Yes, in my bio I mentioned that I get exhausted from even just small amounts of stress. This weekend was a prime example. My friend put on a birthday party for me. She said it wasn’t a big celebration, just a picnic at the park. But my whole family was there, which made it a “big party” for me. It was fun, although I was extremely tired and headachy through most of it. But it’s the aftermath I hate suffering with. I was so exhausted that I couldn’t get up until 3pm the next day, and I was still exhausted yesterday morning, which made me miss school. I am still recovering from the party, even though it was just a picnic with my mom, dad, sister and her husband and two little girls (a 2-year old and a 4 month-old), and my friend. But because of my fatigue, I can only handle one-on-one times with friends, not times in whole groups, so I got drained.
Well, I am glad you are on the road to recovery and have found 2 doctors who care to help. I pray you will continue to receive the help you need and eventually get fully healed. Thank you for your kind wishes for me, too.
Apr 20, 2017 @ 12:10:42
What are your testosterone numbers? Has any doctor tried anything else other than birth control pills? One book that helped me understand hormones better was, “Androgen Disorders in Women” by Theresa Cheung copyright 1999. Some information may be outdated, but more helpful than any PCOS book I’ve ever read. If your testosterone is extremely elevated you should at least have a diagnoses of ANDROGEN EXCESS. From this book it basically says to combat androgen excess you can go a few routes. 1) oral contraceptive bill (birth control) 2) suppression of adrenal androgen (corticosteroids) 3) GnRH analogues (last resort) 4) hormonal therapy (monthly progesterone and/or estrogen related therapy) The book goes into detail about each method, but to me it would seem you need to do something to lower your testosterone if that is the only blood test showing up high. If you do not like the idea of birth control pills, I have had some success with a low dose corticosteroid, but that is because my doctor tells me he knows I have an issue with my adrenal glands. Talk to your endocrinologist about the other options and why they do not feel that is a good option for you. Many will tell you they do not like steroids, but is the doing nothing approach really working for you?
Apr 20, 2017 @ 21:05:11
I don’t remember what my testosterone numbers were. My mom has all that stuff, as I was just a teenager when I was having the first tests done. And each doctor had a different perception of my results. The one from University of Chicago said my results were off the charts. Another doctor from Mayo said that my testosterone wasn’t high enough to do anything about, and those results were at the levels as the ones that were done by the doctor at University of Chicago. I did not like birth control pills whatsoever when a doctor prescribed them for a while. They never cleared up my symptoms, and I felt awful taking them. They made me gain 20 extra pounds, which I never got rid of.
Right now, I do not have an endocrinologist. I don’t even have a primary care physician. So even if I wanted to take the corticosteroids, I couldn’t because I need a doctor to prescribe them. So right now, I have to do the “do-nothing_ approach until I find a doctor.
Aug 04, 2017 @ 11:02:50
Your experiences are almost identical to mine, except my follow through was not nearly as dilligent as yours.
I’ve been diagnosed with PCOS as well, but I just do NOT think that it is what is responsible for all of my symptoms, because of my buffalo hump.
I’m preparing for bariatric surgery now, but it also scares me quite a bit.
I’ve been lost with this for so long, I’ve had so many frustrated cries, I’ve tried diet after diet, every doctor blaming my symptoms on my weight and telling me I need to lose weight but I just can’t.
I can’t really give much guidance because I’m without a solution myself, but you’re not alone! And you’re strong as hell for being put through this.
Mar 24, 2018 @ 02:18:13
Hi Veronika, I just saw your comment now, even though I saw you wrote it way back in August of last year. I apologize profusely for my delayed response. I just want to thank you for your encouraging words. It’s nice to be thought of as strong, especially since I feel so weak all the time.
I totally know what you are going through, too. Doctors have blamed me for my symptoms, too. It is horrible when the person you are going to for help is the accuser. I have had many cries myself and have pretty much given up hope. So I try to just take each day as it comes.
But keep hanging in there. Has your bariatric surgery helped you at all?
Know that I am praying for you.
Mar 22, 2018 @ 14:31:08
Hi, I have just found this page while doing some cushings research. You sound very similar to myself, and I just wanted to recommend the facebook group Cushings Support Group. It is a phenomenal group that has a lot of knowledge and support. You might find some assistance there.
Mar 24, 2018 @ 02:21:54
Hi Lily,
Thank you for telling me about the facebook Cushings group. I will check it out. Thanks. 🙂
Apr 13, 2018 @ 00:09:48
Hello Rachel,
I work in the medical field. What I know is that pituitary-thyroid-adrenals axis is one of very important to regulate hormonal balance in the body. Many diseases come from hormonal imbalance that is related to this. You may also have undiagnosed hypothyroid problem just because all thyroid hormone levels are within normal limit in the test. However, there are 6 different kind of thyroid disease with different mechanism. One of them is that T4 is not converted to T3 for various reason. One of the causes is estrogen dominance even when estrogen level is normal. Excess testosterone can spill over and becomes estrogen. Too abundant estrogen keep T4 from being converted to T3 and makes person go through under the effect of hypothyroid condition. While there are much deeper mechanism, one simple way to try is to apply progesterone cream daily. Further researches are encouraged — Dr. John Lee, an leading pioneer in natural progesterone therpay. The relationship between hypothyroid and estrogen.
Hope this helps for you to get better. Never lose hope!
May God bless you.
Apr 14, 2018 @ 03:49:44
Hello Dongho Seo,
Thank you for your insight into my condition. Can you elaborate more on the pituitary-thyroid-adrenal axis and how that could affect the test outcome for Cushings? Also, are you saying that a person could have hypothyroidism and not have it show up on the blood tests, because the hormones are still in range, though their mechanisms are off? I have been tested for hypothyroidism several times, but they all came up normal. I do have many of the symptoms of hypothyroidism, including feeling cold all the time. I know I have high testosterone levels, as they have been tested and shown as high, and I have some of the affects of that, too, like increased facial hair and chest hair and deepening of the voice.
Where is Dr. John Lee located? How does one get access to his progesterone therapy?
Thank you for your encouragement and willingness to help me.
Rachel
Apr 14, 2018 @ 08:57:01
Dr. John Lee was a doctor who wrote extensively about progesterone therapy for women in menopause. This is one of his books on amazon: https://amzn.to/2JJ1JWw
Here’s a lecture on the HPA Axis.
You may have to sign up/log in to view this video but Coursera is free – and you might find other courses of interest!
https://www.coursera.org/learn/physiology/lecture/DceZ9/hypothalamus-pituitary-adrenal-axis
Dec 25, 2018 @ 21:00:10
Hi Rachel, I’m 27 and share very similar symptoms with you. I luckily have a great primary care doc who I can talk to about this during my next appt. I’d love to compare notes! Feel free to reach out.
Dec 30, 2018 @ 03:31:24
Hi Rachel, Yes, I would be interested in comparing notes with you, too. If you want to contact me directly, my email is leftypeep@gmail.com. I look forward to hearing from you!
Jul 02, 2020 @ 16:02:41
Dr. Findling Froedert Endocrinology Center in Milwaukee WI. One of the Top 5 endocrinologist in the nation. Any scans showing a tiny tumor on pituitary gland, adrenal gland or your lung?
Sep 16, 2020 @ 22:03:45
I am not a doctor, but I have almost the exact issues as well. Doctors “diagnosed” me with ibs-d, as that is the most obvious symptom, but the others are all true as well. I gave up on doctors about 10 years ago, and started doing my own research and self-experimentation. I discovered that I sometimes have high testosterone, and usually have extremely high dhea. But I also discovered that I have low estrogen and nearly non existent progesterone. The diarrhea is caused by low progesterone, and taking progesterone improves the pain of it. I also discovered that by taking Female Axis Endocrine Drops by Professional Formulas, combined with Natural Sources-Thyroid Complex, most of my issues dramatically improved. You may want to try them. I stopped taking them because I am going to try again to work with a doctor to try to solve this mystery, and actually get answers. But if it fails, I’m going back to that regimen myself, and just saying screw it. Hope you feel better!
Sep 21, 2020 @ 04:47:23
Thanks for your comment. Wow, I never knew low progesterone caused diarrhea. That’s good to know. I haven’t had my progesterone checked in years. That’s interesting you mention stuff related to the thyroid, as I have thyroid issues, too, that I just recently found out. My blood tests show high T4 and normal T3. And an ultrasound of my thyroid showed many solid nodules, which are most likely producing the overabundance of T4. However, I have the symptoms of hypothyroidism– hair loss, feeling cold, fatigue, hoarse voice. So I wonder if the stuff you take that improves your symptoms would help me. Can you order it online, or do you have to get it through a doctor?
It sounds like a good plan you have. I hope it goes well for you and that you feel better, too.