What about Cushing Syndrome
February 22, 2024 11:30 AM Subscribe
Could I have Cushing Syndrome? I have a PTSD diagnosis and have gone through relatively succesful treatment, but since summer, my symptoms have flared back up, with chaotic consequences. Could there be a whole other thing going on, on the side?
Wall of text to follow. Don't even open if you don't have knowledge or experience, because it is boring.
Things are not going well, I won't go into details but I need help, and have a doctor's appointment in two weeks (he's on holiday, and this definitely needs my regular GP).
I was diagnosed with PTSD some time ago, and I have received excellent help. Both my doctors and I felt I was ready to be discharged, but at the very final talk with my psychiatrist, we talked a bit about the mystery of my excessive weight-gain and dramatic rise in mental health issues in 2001, long after the events that caused the PTSD. There was no conclusion, but the conversation has been lingering in my mind. The psychiatrist encouraged me to examine wether any events could have triggered the PTSD back then, but though some weird stuff happened at the time, it doesn't really add up.
Now I'm going to put in a few facts about the weight gain that I have never really discussed in detail with my doctor, but that seem significant:
before gaining weight, I was within normal BMI, but I was very skinny. I wore boy's size 14 years from H&M for my jeans and all my women's wear was altered to fit me. So smaller than model sizes. I could eat all the food and drink all the (not diet) coke I wanted. I was fit, after a life-time of enjoying outdoor life, including horse-back riding, biking and hiking. The reason my weight was up to normal was that I had very dense bones and a high percentage of muscle, due to all that activity.
Suddenly, within 18 months, with no changes in lifestyle, I put on more than 10 kg, enough to put me on the verge of overweight, but still not enough to make me or the doctor worry, it is quite normal at the end of your 30s and after two child-births to put on weight. But one thing I wondered about but never discussed with the doctor, was that I developed a fat lump on my neck, what I now know is called a buffalo lump, and that most of the weight was centered on my belly. I had gained weight in puberty and during pregnancy, and that was all evenly spread mostly below my navel and disappeared again rapidly.
Since then I have gained further 20 kgs, and I am now officially obese. . I do look very different than I did before, I have a round face that reddens on all occasions, and a very big bulge on my stomach. I look unhealthy and fat, but my arms and legs are skinny. Almost all the fat is on my stomach side, face and neck, with only a little on my butt and thighs.
I have been trying to loose weight because I also have the BRCA2 gene, and am opting for a mastectomy, but can't be operated while obese. I eat mostly vegs and keep count of my calorie intake, and it is at about 1800 a day on average. I don't feel hungry or deprived, I enjoy my food.
Then yesterday, I clicked on a YouTube link by accident. I thought I would be getting Max Millers history channel, but I got a video about Cushing, with a drawing that looked exactly like me. Since then I have googled and realized that my symptoms over the years tick almost all the boxes. I'm not putting in all the symptoms here, to limit the wall of text.
Again, I have made a doctor's appointment. But I understand that Cushing is extremely rare, and also that there is a significant overlap between Cushing and PTSD in symptoms. So my doctor might not know a lot about it. What if I have both? What if I don't have PTSD, but it is all Cushing? (Though that wouldn't explain everything before 2001). I feel I need to be prepared for my consultation. Is there something I'm missing? Could there be other explanations? What now?
The internet tells me that Cushing is a serious disease, so I feel I need the best of help. I'm not in the US, economy is not an issue, but GPs won't send you off to a specialist with no clear indications.
Oh, my boyfriend at the time said he experienced a significant change in my character at about the same time I began to gain weight. I don't think any of us could really explain what that meant, though I understood what he was saying. We are still friends, and there is absolutely no reason to think he could have triggered the PTSD at the time.
Things are not going well, I won't go into details but I need help, and have a doctor's appointment in two weeks (he's on holiday, and this definitely needs my regular GP).
I was diagnosed with PTSD some time ago, and I have received excellent help. Both my doctors and I felt I was ready to be discharged, but at the very final talk with my psychiatrist, we talked a bit about the mystery of my excessive weight-gain and dramatic rise in mental health issues in 2001, long after the events that caused the PTSD. There was no conclusion, but the conversation has been lingering in my mind. The psychiatrist encouraged me to examine wether any events could have triggered the PTSD back then, but though some weird stuff happened at the time, it doesn't really add up.
Now I'm going to put in a few facts about the weight gain that I have never really discussed in detail with my doctor, but that seem significant:
before gaining weight, I was within normal BMI, but I was very skinny. I wore boy's size 14 years from H&M for my jeans and all my women's wear was altered to fit me. So smaller than model sizes. I could eat all the food and drink all the (not diet) coke I wanted. I was fit, after a life-time of enjoying outdoor life, including horse-back riding, biking and hiking. The reason my weight was up to normal was that I had very dense bones and a high percentage of muscle, due to all that activity.
Suddenly, within 18 months, with no changes in lifestyle, I put on more than 10 kg, enough to put me on the verge of overweight, but still not enough to make me or the doctor worry, it is quite normal at the end of your 30s and after two child-births to put on weight. But one thing I wondered about but never discussed with the doctor, was that I developed a fat lump on my neck, what I now know is called a buffalo lump, and that most of the weight was centered on my belly. I had gained weight in puberty and during pregnancy, and that was all evenly spread mostly below my navel and disappeared again rapidly.
Since then I have gained further 20 kgs, and I am now officially obese. . I do look very different than I did before, I have a round face that reddens on all occasions, and a very big bulge on my stomach. I look unhealthy and fat, but my arms and legs are skinny. Almost all the fat is on my stomach side, face and neck, with only a little on my butt and thighs.
I have been trying to loose weight because I also have the BRCA2 gene, and am opting for a mastectomy, but can't be operated while obese. I eat mostly vegs and keep count of my calorie intake, and it is at about 1800 a day on average. I don't feel hungry or deprived, I enjoy my food.
Then yesterday, I clicked on a YouTube link by accident. I thought I would be getting Max Millers history channel, but I got a video about Cushing, with a drawing that looked exactly like me. Since then I have googled and realized that my symptoms over the years tick almost all the boxes. I'm not putting in all the symptoms here, to limit the wall of text.
Again, I have made a doctor's appointment. But I understand that Cushing is extremely rare, and also that there is a significant overlap between Cushing and PTSD in symptoms. So my doctor might not know a lot about it. What if I have both? What if I don't have PTSD, but it is all Cushing? (Though that wouldn't explain everything before 2001). I feel I need to be prepared for my consultation. Is there something I'm missing? Could there be other explanations? What now?
The internet tells me that Cushing is a serious disease, so I feel I need the best of help. I'm not in the US, economy is not an issue, but GPs won't send you off to a specialist with no clear indications.
Oh, my boyfriend at the time said he experienced a significant change in my character at about the same time I began to gain weight. I don't think any of us could really explain what that meant, though I understood what he was saying. We are still friends, and there is absolutely no reason to think he could have triggered the PTSD at the time.
Just outside the edit window - forgot to mention that my friend's doctor thought about Cushing's exactly because she had been under an avalanche of stress, just a multi-year cavalcade of pressure and constant catastrophes. Guess what's the stress hormone. Guess what tends to go out of whack in PTSD sufferers and abuse victims. So suspecting Cushing's or another cortisol-related disorder is deeply logical in your case. It doesn't have to be either-or, it can be and may well be both.
And honestly if you can wrangle an endocrinology consult based on your inability to lose weight (which is totally an endocrine thing and their bread and butter), it's worth checking out the other usual suspects. Feel free to admit your symptoms may also be related to a malfunctioning thyroid, insulin resistance, low vitamin D, low ferritin, whatever your ovaries are doing or not doing at the moment, high testosterone, hypoadiponectinemia or one of a dozen other different factors. You know your GP best and pick your tactics, but I've had doctors much more willing to write referrals when I rattled off a list of words they last heard in residency.
posted by I claim sanctuary at 12:58 PM on February 22, 2024 [6 favorites]
And honestly if you can wrangle an endocrinology consult based on your inability to lose weight (which is totally an endocrine thing and their bread and butter), it's worth checking out the other usual suspects. Feel free to admit your symptoms may also be related to a malfunctioning thyroid, insulin resistance, low vitamin D, low ferritin, whatever your ovaries are doing or not doing at the moment, high testosterone, hypoadiponectinemia or one of a dozen other different factors. You know your GP best and pick your tactics, but I've had doctors much more willing to write referrals when I rattled off a list of words they last heard in residency.
posted by I claim sanctuary at 12:58 PM on February 22, 2024 [6 favorites]
Best answer: Hey there. A friend sent me this link knowing about my experience. I had Cushing's Disease caused by a microadenoma on my pituitary gland. Cushing's can be from endogenous causes or exogenous. Endogenous is usually a pituitary or adrenal endocrine tumor that messes with the hypothalamic–pituitary–adrenal axis and basically tells your adrenals to produce cortisol 24/7. The exogenous cause is usually from being on steroids like prednisone or hydrocortisone for prolonged periods of time but major depression/trauma can also cause similar symptoms.
The description of what you've experienced the past couple years sounds exactly like a typical Cushing's story. A lot of doctors dismiss Cushing's as a possibility because it's supposedly so rare. I question if it's actually that rare and just goes undiagnosed most of the time. I don't know what your PTSD symptoms were but I had a pretty significant mental state change. I was paranoid, had major anxiety, got very angry about minor things which is something that was especially weird for me as I'm usually pretty chill, and depression was completely overwhelming. I completely doubted myself and even questioned if I was making it all up. Turns out that's a pretty common scenario for Cushing's patients, especially because of the gas lighting from doctors. The moon face, buffalo hump, and large abdomen with skinny limbs are all textbook.
I've talked to tons of people with Cushing's or suspected Cushing's on various online support groups and the most common frustration is not being taken seriously by doctors so they won't even run the tests. One thing that a lot of people have said gave them credibility was to bring a series of photos with dates to their appointment that show the dramatic changes. If you can put together a timeline, I highly recommend it.
I'm happy to share more of my experience if you're interested. The most important part is that the tumor was removed and I'm mostly back to normal now.
posted by usagi at 9:46 PM on February 22, 2024 [9 favorites]
The description of what you've experienced the past couple years sounds exactly like a typical Cushing's story. A lot of doctors dismiss Cushing's as a possibility because it's supposedly so rare. I question if it's actually that rare and just goes undiagnosed most of the time. I don't know what your PTSD symptoms were but I had a pretty significant mental state change. I was paranoid, had major anxiety, got very angry about minor things which is something that was especially weird for me as I'm usually pretty chill, and depression was completely overwhelming. I completely doubted myself and even questioned if I was making it all up. Turns out that's a pretty common scenario for Cushing's patients, especially because of the gas lighting from doctors. The moon face, buffalo hump, and large abdomen with skinny limbs are all textbook.
I've talked to tons of people with Cushing's or suspected Cushing's on various online support groups and the most common frustration is not being taken seriously by doctors so they won't even run the tests. One thing that a lot of people have said gave them credibility was to bring a series of photos with dates to their appointment that show the dramatic changes. If you can put together a timeline, I highly recommend it.
I'm happy to share more of my experience if you're interested. The most important part is that the tumor was removed and I'm mostly back to normal now.
posted by usagi at 9:46 PM on February 22, 2024 [9 favorites]
I just remembered this article from a few years ago. It really resonated with me.
posted by usagi at 3:32 PM on February 23, 2024 [1 favorite]
posted by usagi at 3:32 PM on February 23, 2024 [1 favorite]
Here's another article. USian comedian Amy Schumer recently got diagnosed with Cushing.
posted by mareli at 5:37 AM on February 26, 2024 [1 favorite]
posted by mareli at 5:37 AM on February 26, 2024 [1 favorite]
This thread is closed to new comments.
This friend didn't have as many symptoms as you, and has scoliosis / one protruding scapula rather a buffalo lump, but the endocrinologist was still enthusiastic about making sure (and proposed it - my friend had no idea about Cushing's). She turned out to have normal cortisol suppression so they went on to second and third guesses (including untreated inattentive ADHD, natch), but Cushing's very much something endocrinologists are familiar with. It's rare - estimated new diagnoses are under 10 people per 1 million population - but that still works out to 50-something people in Denmark each year, so either the endocrinologist you get referred to or someone they know have run across it in their career, especially if you end up in a bigger hospital.
posted by I claim sanctuary at 12:41 PM on February 22, 2024 [5 favorites]