Has anyone else gone through a cushing’s fear?

[UserName20]

Hi,

On my other post that was back from 2016 I had been taking about a hump on my lower neck/ upper neck. I was 16 at the time and I know it was there before I was 16 because after I noticed it I looked at pictures from when I was 15 and I had it then too. It is what doctors call a “Buffalo hump” looking at pictures online.

When I was 16 and first noticed this I panicked, thinking it was a huge tumor growing there. I remember crying and begging my parents to take me to a dr, but they did not see the need to. I eventually had calmed down about it, accepting it must be a part of my body. I’m going to be honest and this is SO embarrassing to admit. My younger years through middle school/ high school I went through a time of really bad depression. My hair was in a pony tail literally every single day. I only messed with it to take basic care. One day I cut it all off, and that is when I noticed the fatty pad/ hump on the back of my neck. My hair was so heavy on me and i also always had my head down at school because I was so worried my head was too big for people to see. So I wonder if part of it really was my posture, I’m sure the extra weight on my head and constantly having it downwards couldn’t have helped. When I cut my hair off I couldn’t believe how light my head was.

Anyways, Flash forward to 5 years later I suddenly was reminded of it. I have been on google for the past few days and I have found that this is common with cushings disease. I looked up the symptoms and I have a LOT. My gynecologist had thought that I had PCOS, which causes similar symptoms. ( irregular periods, excess hair growth etc) which I DO have. But.. she wasn’t able to see any cysts on my ovaries when I had an ultrasound last year. My thing is.. this hump on my back is making me think it’s cushing’s disease which apparently is caused by a tumor in your brain. Apparently 10 to 15 people per million are diagnosed with it per year. And I am so scared that I will be one of the rare cases.

I know it’s rare. And I know that I had a lot of heavy hair on my head for a couple of years and I constantly had my head down and I hear a chiropractor say that fatty tissue can develop there from bad posture, but I have so many symptoms of this cushing’s disease. I have 100% convinced myself that I have this and will either suffer my entire life with a low quality of life and/or have to have risky brain surgery. I’m going to make an appointment with a dr soon, in the mean time I just am driving myself into a hysterical mess. I have so many plans for the future for myself. My boyfriend and I are talking about getting engaged, I’m trying to figure out a career path and I feel like my life is just about over right now and I think that’s the hardest part. My anxiety is telling me I’ve already been diagnosed and I won’t ever get to live out my life. My boyfriend tries to contort me, and when I hear him talk about our plans anymore I feel like I will break down in tears and I have to hold them back because I’m so scared I won’t be there.


Has anyone else gone through this fear? I feel so terrified to even call and make an appointment. Especially since I just recently stopped seeing my pediatrician who’s known me my entire life. If I do have it and have high cortisol levels always maybe that explains my anxiety... but how will they know if mine is high due to constant anxiety and stress or cushing’s?

I read online that if this goes untreated the median age of survival is 5 years. I had this hump at least since I was 15 and since I’m 21 that’s been 6 years. I don’t really think I gained any crazy amount of weight in a short amount of time. I’ve been a bit heavier the majority of my life. I also don’t really think I bruise easily or have abnormally thin arms or legs for my weight. It also said it’s hard for people with this disease to lose weight, but I went on a diet last year before covid hit and I was doing pretty well with losing pounds.

I have also re-enrolled in an online therapy as I can tell I’m spiraling. I really thought I had kicked it this time. And I know it’s normal to have concerns over health things, but reading this back to myself I think I’m a little over the top. ( as usual)

[AbyssalStars]

Yep, I've been there. After I was diagnosed with PCOS when I was 17, I was convinced that it was a misdiagnosis and that I really had Cushing's instead. I had gained a massive amount of weight on only 2 months (50 lbs. Yeah, that's a LOT). Because of this incredibly rapid weight gain, I had insane bright red stretch marks across my belly from navel to nether region and even down across my thighs. Accompanied with this, I completely stopped having my period and started developing facial hair along my side-burns/chin. Needless to say, I was convinced that the rapid weight gain and red stretchmarks and fuzz on my face was due to Cushing's rather than PCOS. I even noticed that fatty hump. I went to doctor after doctor convinced that this was what I had for a good year, and all that ever came up was elevated testosterone (from PCOS), NEVER cortisol (which would point towards Cushing's).

Eventually, my worry lowered once I realized that my rapid weight gain had stopped and that my stretch marks were turning to a normal skin color. With Cushing's weight gain doesn't stop, you keep gaining until you are obese/ morbidly obese and the stretch marks never fade into a healthy skin tone, they remain a livid red/purple because of cortisol. I also realized that my fatty hump is probably the result of poor posture when reading/looking at my phone. I am still alive today at 23 and my worry about this began when I was 17. All of my symptoms were due to PCOS and poor lifestyle choices, NOT Cushing's.

Also, I know a few people with fatty humps, and none of them have Cushing's. A fatty hump can definitely be caused by poor posture + weight gain (or just being slightly heavier at all). I think that you are probably fine!

[UserName20]

Thank you SO much! Your response really helped put my mind more at ease! It’s so comforting knowing others have felt the same way in a situation like this. I know they say cushing’s is hard to diagnose because the symptoms can go along with other things too like PCOS. It’s strange. I didn’t have cysts on my ovaries but the dr said that didn’t rule out PCOS especially with all of the other symptoms I had. I take comfort in knowing that I’ve had this hump for about six years and that losing weight was not a struggle for me when I began my diet last year. I lost 30 pounds right in the beginning of dieting and going to the gym. I’ve been on YouTube looking up videos for a fatty hump on the neck, with how many views it has I know that more people than I thought have this too. ( and a lot of the videos are chiropractors talking about posture )

I take comfort in knowing that cushing’s disease is rare and that from what I’ve read it is usually treatable. ( not sure about curable completely I get different answers on that )

I think at this point I will make an appointment once I have the braveness. I’m sure he will want to run tests and I know that I can’t panic when he orders them assuming this means he believes I have it. I also think I’m going to get back on weight watchers and start going to the gym again. ( when covid started that’s when my diet stopped and going to the gym stopped too since it was closed)

[AbyssalStars]

Yeah, I don't have any cysts either, but I definitely have high testosterone, ergo PCOS. It's really about the hormone dysregulation more than anything. It's awesome that you've been able to lose weight. I have too, but for much less healthy reasons (I'm currently on a liquid diet because of acute pancreatitis).

Agreed. Getting an appointment to check hormone levels would be great, at the very least to see where yours are currently at. I'm assuming they would check testosterone, Thyroid (TSH), and cortisol if you asked. With PCOS, exercise and balanced low-refined carb diet can greatly improve symptoms and hormone levels, so it's a great idea to get to the gym!

Elevated testosterone can exacerbate anxiety in some individuals. A lot of videos I watched of people coming off of testosterone said that their main complaint was increased anxiety/panic attacks (I was watching transitioning and de-transitioning videos to get a feel for what hormones can do to the body, I am not transgender myself, but it was very informative). Elevated Thyroid hormone has a similar effect.

Also, anxiety can naturally elevate cortisol on its own, so elevated cortisol does not necessarily indicate Cushing's. For a proper Cushing's diagnosis, I think that cortisol levels have to be nearly off-the-charts high.

Hope everything goes well! :yesyes:

[UserName20]

I thought my doctor was crazy when she said not having cysts did not rule out PCOS, I am so glad you told me you didn’t have any either! I was so confused and thought “then what was the point of the ultrasound.” Lol! I looked it up and it turns its pretty common to have PCOS without cysts! Not that having PCOS is the best thing ever, but I would be happy to know that’s all that I have and that it’s manageable and also common for us women!

I think I finally have the courage to make the dr appointment. It’s a brand new doctor so I’m not sure how his mannerism will be. I know some doctors run lots of tests and others don’t as much. I guess if he isn’t a good fit I will find another ( but not for the same issue, I need to work on accepting a diagnosis )

I have been googling a bit more ( I’m ashamed to admit ) but I am more so looking for symptoms I don’t have. I think cushing’s has so many symptoms that are related to PCOS or just being overweight in general. For example for things I don’t have - I don’t think my arms or legs are thin for my body size, I don’t bruise easily, I read that with cushing’s losing weight is almost impossible with diet alone because of the cortisol, but I lost 30 pounds last heat pretty easily! My doctor was even more impressed with me.

I think PCOS in my situation makes perfect sense. I think the one thing holding me back and weighing me down ( literally lol ) is the fatty hump on my upper back / lower neck. I’ve been watching videos from chiropractors on YouTube about this. I read through all of the comments and see the thousands or even millions of views and it bring me comfort knowing others have this too. And I know for a fact my posture is bad. That is an absolute fact. Then there’s always the few comments urging everyone to get checked for cushing’s which raises my anxiety back up a bit.

I have definitely felt more calm about this the last day or so. I know that when that appointment rolls around I will be panicked all over, but in the mean time I think I will focus on eating healthy and making my way back to the gym. 😊

[nomorepanic]

I have been tested for cushings for many years and still am being.

It is done with 24-hour urine collection tests.

[UserName20]

Oh wow you have?? It must be a more common thing that doctors look for than I initially had thought! I have set up an appointment, but they couldn’t get me in until June 7th which is 19 days away.. my anxiety is going to be so bad for the next few weeks as I wait.

[nomorepanic]

I really don't think I have it but the urine tests keep coming back borderline so they keep repeating them.

[UserName20]

I am back in therapy. However, it has almost raised my anxiety. I was explaining to my therapist how I am convinced I have this and how it’s taking over my life. She said “you do have a disease but probably not cushing’s.” I do have a disease?? I’m not sure why she would say something like that. Now I’m worried what disease she is saying I have. She was also going into detail saying people who have diabetes in their family will get it almost for sure no matter what they do. I don’t know how to feel about that?? She also told me to Google my symptoms on Mayo Clinic because that will give me accurate information...?

[Fishmanpa]

I am back in therapy. However, it has almost raised my anxiety. I was explaining to my therapist how I am convinced I have this and how it’s taking over my life. She said “you do have a disease but probably not cushing’s.” I do have a disease?? I’m not sure why she would say something like that.

The disease she's speaking of is a mental health illness called HA.

FMP

[pulisa]

I am back in therapy. However, it has almost raised my anxiety. I was explaining to my therapist how I am convinced I have this and how it’s taking over my life. She said “you do have a disease but probably not cushing’s.” I do have a disease?? I’m not sure why she would say something like that. Now I’m worried what disease she is saying I have. She was also going into detail saying people who have diabetes in their family will get it almost for sure no matter what they do. I don’t know how to feel about that?? She also told me to Google my symptoms on Mayo Clinic because that will give me accurate information...?

I recommend changing your therapist to someone who has experience of treating HA.

[UserName20]

I was thinking she may have been trying to talk about anxiety, but I just found it strange she said I have a disease. The comments about having family members with diabetes makes the other members likely to get it no matter what they do or eat kind of drove my anxiety up. I also was mentioning a fear I have of going to the dentist. ( I have some cavities to be filled ) and she told me that I don’t want to have to get dentures so I better go. And that raised my anxiety too.

[Fishmanpa]

I was thinking she may have been trying to talk about anxiety, but I just found it strange she said I have a disease. The comments about having family members with diabetes makes the other members likely to get it no matter what they do or eat kind of drove my anxiety up. I also was mentioning a fear I have of going to the dentist. ( I have some cavities to be filled ) and she told me that I don’t want to have to get dentures so I better go. And that raised my anxiety too.

Definitely a different approach from a therapist but one that I'm familiar with as many of my replies are quite similar as I don't pull any punches.

FMP

[Bindie77]

I’ve had exactly the same hump for at least ten years. I was told when I loose weight it will shrink but I also think it’s down to posture too. I’ve been tested for Crushing disease too and it was clear. My osteopath says it’s very common . I hope that helps

[UserName20]

Thank you so much for your reply! It really makes me feel better and not alone in having this.

I just got back from the doctor. It was not exactly the easiest appointment I’ve had. It was a brand new doctor. My heart rate shot up ( as it always does ) my blood pressure shot up too and they had to double check it and it only slightly lowered. He pretty much gave it to me straight and told me that cushing’s disease is a possibility and was going on to tell me I have the hump on my neck and some other symptoms. After a minute though he just kind of shrugged and said “but I doubt that.” He explained that having extra weight can cause that and all of the symptoms that I’m having.

He got ahold of my fasting blood sugar levels from another doctor I had. He told me he wanted to rerun the test to ensure I’m not diabetic and he’s ordering all basic tests as well. I don’t think he’s testing my cortisol yet though? He seemed to want to work on losing some weight first but he told me if he can’t help me he will send me to an endocrinologist.

I am aware that I am some overweight. I started a diet a little over a week ago and am trying to lose some. I just feel like it’s always hard to hear. I left pretty embarrassed and upset at myself. Now just to schedule those lab works

[UserName20]

Well. I got my blood tests. They checked my cortisol level and told me it was normal? So does that mean I don’t have cushing’s? I’m going back to the doctor Monday. They didn’t want to tell me my results over the phone. They said the dr would prefer to talk over it in person and they would move my appointment up.

That obviously made me panic. I kind of argued until the nurse got on the phone and told me to calm down. She told me my blood sugar levels were okay ( the dr thought for sure I was diabetic and was even talking about starting me on insulin ) he had me all worked up before I even had the test done.

However they told me my cbc test was a little off. They said something about my liver levels being off? The nurse said it can just be from carrying some extra weight but the doctor may order a CT or ultrasound.

I just feel sick with worry.

[UserName20]

My doctor told me there was no evidence of cushing’s in my tests. He said that I’m not diabetic either because my fasting blood sugar was almost borderline too low. But I’m worried I am diabetic and it’s just because I hadn’t ate much the entire day before the test that it was that low? I think it would take more time than two weeks of eating healthy to lower my resting blood sugar though?

I think my mind is trying to poke holes in the results and what he told me and find something wrong. I am getting an ultrasound because my liver count was a little high. He told me he’s doing it just in case and he’s sure it’s nothing that’s a big deal.

[AbyssalStars]

Hey there, I am sorry that you have been so stressed about this. The key word in fasting blood sugar test is fasting. Before you take this test, you should not eat anything at least 8 to 12 hours prior in order to get the most accurate results. If you eat something, your levels might be more elevated than they should be, and give a false positive reading. So the fact that you didn't eat anything the entire day before shouldn't have screwed you up that badly, since you were technically doing a prolonged fast. In fact, it should make the test a bit more accurate. I doubt that eating healthy would be enough to lower your readings into the low normal range if you had diabetes.

About the high-ish liver count; it is possible that you have non-alcoholic fatty liver. This is actually really common and is not a death sentence (approximately 50% of US adults have it). You can reverse the fatty liver by weight loss (losing the visceral abdominal fat) and by incorporating moderate exercise and a diet change into your lifestyle. By diet, I mean reducing added sugars and processed carbs and increasing whole foods/vegetables/fruits. Fatty Liver in and of itself is asymptomatic, but it can on occasion progress to liver cirrhosis (liver damage). Which is why it is a good idea to reduce the amount of fat stored in your liver by losing weight.

So weight loss is good both to manage possible fatty liver and to lower your risk of diabetes. Not to say that weight loss is a magic cure-all (there are people with fatty liver and diabetes who are normal weight), but it can help. Incorporating exercise and a healthy diet should help even more. I am in no way trying to fat shame you; sorry if it sounds like I am. I have been there, and just recently got back to an "average" bmi range.