How I Dealt with Cushing’s Disease Before, During, and After Diagnosis
Hey, everyone!
This week, I want to get a little more personal. Many readers have asked how I dealt with Cushing’s disease. So, I want to share that part of my story with you.
Me in 2014. (Photo by Catarina Louro-Matos)
In some ways, dealing with Cushing’s was easier once I received a diagnosis. Before I knew what Cushing’s was, I thought I was going crazy. For nearly two years, I continued gaining weight while regularly going to the gym and eating well. There was no explanation or sound reason why it was happening. Once I met my endocrinologist, however, it all made sense.
In October 2014, I started becoming incredibly tired all the time. In January 2015, I noticed I had a little bulge growing on my lower abdomen. I didn’t think much of it at the time, but after my diagnosis in August 2016, these occurrences in my life started to make sense. That tiny bulge kept growing and growing, and my exhaustion went to an entirely new level. I couldn’t sleep at night, and I was always hot and sweaty.
January 2015 when I noticed the bulge starting. Super small but still a difference I noticed
Fast-forward from January 2015 to October 2015. My gut was getting larger and I had acne all over my chest, back, and face. I never had an issue with acne, so I thought it was strange. I also started growing a lot of hair on the sides of my face, belly, and lower back. People started suggesting I wax my face without me soliciting their opinion — as if my facial hair personally bothered them. Of course, this made me feel bad. A manager at a former job even told me to get the medication Accutane (isotretinoin) for the acne on my chest. That comment continued to bother me until I received my diagnosis.
By June 2016, I had full-blown moon-face, and my gut was somehow still growing. I didn’t fit into any of my clothes. My memory was shot. I was aching all over. And I was lucky to get three hours of sleep each night. At this point, I was feeling lost, hopeless, and scared.
October 2015. (Photo by Catarina Louro-Matos)
Everything that was happening to me didn’t stop, no matter how many food-sensitivity diets I followed, how much exercise I got, or how much I wished for it all to go away. I felt as if I was losing my mind. People around me couldn’t believe it. Some doubted I was following my diet or exercising. This made me feel ashamed and I hated showing my face and body in public. I would go to work and then go home. I never went anywhere else.
All this changed when I met my endocrinologist, who mentioned Cushing’s disease. I promptly searched the term immediately after leaving his office. I knew that’s what I had. Before he explained it, and before he discussed the difference between polycystic ovary syndrome (PCOS) and Cushing’s disease (PCOS is what my naturopath thought I had), every fiber of my being told me that I had Cushing’s.
Of course, I was scared. But receiving an official diagnosis on Aug. 15, 2016 provided me relief. A huge weight was lifted off my shoulders. I knew that I had Cushing’s, and I knew it was a pituitary tumor that had caused it. My attitude completely changed, and I became a more positive person after diagnosis.
December 2015 to December 2016, a month before surgery. (Photos by Catarina Louro-Matos)
Positivity and being honest with those around me about my situation is how I handled Cushing’s. Before diagnosis, I was ashamed of myself, so I was negative and constantly down. Most people are surprised that I didn’t continue to be negative, because when they hear my story, they assume they would’ve been negative in that situation.
Positivity with myself was so incredibly important and a huge reason I think I’ve been doing well, according to my doctors. I was glad to have a diagnosis, amazing doctors, and a chance to live life again after surgery and a lengthy recovery. The road to surgery and recovery was a long one, and it wasn’t easy. But I still kept my spirits up.
And that, my friends, is how I dealt with it. It wasn’t easy. I wasn’t always positive. But you’ll eventually find your way if you haven’t yet. It’s OK to not be OK.
Until next week.
XOXO, Catarina
***
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Cushing’s disease.
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Comments
Mary-ann Rogers
Wow Caterina,
Your story is my story. This is so good to read. I am just about to head into Pit surgery and I am so looking forward to getting my body and brain back. A lot of what I read on the internet is full of negative stories, so good to read a positive one. I can't wait for 2019.
Thank you
Catarina Louro-Matos
Hi Mary-Ann,
Thank you so much for reading!
It'll take time, so be patient with yourself! I'm still struggling and each day I learn something new about myself but it definitely gets better. No one has the same timeline so don't get discouraged! I wish you the best!
- Catarina
Bob
I have it, I can not find on the internet, simply, the diet plan, what did you eat, after finding out, and, what did you eat, and any suggestions on what to snack, what to sooth the pain. No fat diet?
lili
hi bob
good questions...i just had my pituitary tumor removed 3 weeks ago and was wondering about what pain meds people are on, what they're eating to lose the weight and help repair all the damage the cortisol has done to our muscles etc...
any answers or suggestions?
lili
Kim
Did anyone find the link for a good diet plan?
Rachel
I went to the endocrinologist after blood work from my dr showed tsh and t4 low and glucose high..he ran so many test and called back saying my blood work was within normal range..but my vitamin D was low (even though I have been on 50000iu once a week for last 6 months) so now adding a 2000iu daily..so think the endocrinologist tested for Cushing's or should I ask ..is is possible to still have it.. my body hates me..thanks for reading I dont know what is causing the rapid weight gain and other symptoms. I was the same weight for like 5 years and now boom..my boss said I should get tested for crushing if I havent already so who knows
Kelsey
Hi Catarina,
Thanks for sharing your story! I'm a 25 year old female who just moved to Colorado from Wisconsin. After about 2 years of trying to tell people there was something wrong with me, I was diagnosed with Cushing's in July of 2019 (thank you to my amazing endocrinologist who finally decided to believe me and do something about my complaints!). My story is almost exactly like yours, which of course I'm not happy that you had to go through something like that, but it definitely makes me feel less isolated. It was super frustrating that no one believed me and everyone just kept giving me diet and exercise advice, even though I eat pretty healthy and get plenty of activity and exercise. I've gained nearly 50 lbs in the past 2 years and it's so embarrassing to see people I haven't seen for a long time because I've gained so much weight. I also have acne all over my back, I sweat all of the time, and I'm exhausted every single day. I'm in the middle of an internship at a children's hospital so I have to wait to get surgery until December. It's frustrating that I have to live with these symptoms for a few more months, but I'm just glad we're finally taking some action. How long did it take your symptoms to start going away after surgery? I know it will take a long time to recover and I'm just afraid I'm going to get frustrated if the weight doesn't come off as quickly as I expect it to.
Gina
Hi Kelsey,
I’m in the same boat as you. I found out in May that I have a tumor on my left adrenal gland. The past year has been the worst of my life not knowing why I was gaining weight, depressed, mentally/emotionally erratic and overall feeling like I was going crazy. I’m now 20 lbs up, and can’t stand looking in the mirror, which has led to a life of total seclusion outside of work. None of my clothes fit but I refuse to buy bigger clothes since I see that as giving up. After months of testing and waiting for appointments (had to wait two months just to get in with an endocrinologist who was covered by my insurance), I was finally diagnosed with Cushings, and got the green light for adrenal removal surgery. September 23rd is the day, but I’m like “wow another week and a half of my brain taking a cortisol beating”... I’m figuring out taking it one day at a time and remaining as positive as possible, preparing myself for what seems like it will be a long recovery period is all that can be done.
Before finding out the diagnosis, I noticed that my short term memory and ability to retain information are nearly non-existent now. I used to be sharper than an arrow. Hoping the cognitive effects will regenerate over time.
My main struggle is dealing with my thoughts on body-image. I’ve always been overly self-conscious, but now it’s another level. The thought of running into someone I know at the store makes me want to hurl. I don’t even want my family to see me, and I know that is ridiculous. No amount of working out, and eating just chicken breast and broccoli every day makes a difference in the fact that I could pass for being 6 months pregnant.
On that note, I’m going to go for a long walk and get some fresh air. September in Chicago is our one month of perfect weather. I’m not going to let hormones dictate and control my life! Thanks for listening to me vent :)
L.
Any chance you can share the Dr.s name? I’m 23 & not one doctor believes my symptoms. I’ve seen 2 “top” endocrinologists & I am desperate for a real recommendation. I’m at the end of my rope. Thank you.
Tee kay
Try Theodore Friedman in Los Angeles. His bedside manner is not great but he’s passionate about helping people with cushings.
Cindy Carrington
I can relate to All of this!
I'm so glad I read this.
Cindy
Hi what size was your tumor they did a CT scan on me and they found a small tumor on my right side adrenal gland I have all the symptoms I can stay in bed all day nothing motivates me I will be seeing the endocrinologist at the end of the November
Arlene Olsen
Jeez, I have read all your stories and desperately hope that I do not have Cushings. I have been diagnosed with Dercums Disease. What a pain in the butt that is. But now my Endo Dr.is running more tests for Cushings. I feel like I just need to trade this body in and get a newer and better model. You all seem so courageous, determined and positive as you battle this awful disease. I have quite a few of the symptoms some are crossovers that Dercums share. I am only praying that my tests results come back negative.
Good luck to you all.
Jen
Did they ever test you for CAH or NCAH? I have NCAH and concerned I may have cushing also
Nicole Mott
Hi!
My name is Nicole and I have a lot of similar symptoms and the Cushing's hump, I am going through testing now but wondered how exactly the Dr. diagnosed you and what were your Cortisol levels when tested?
Kayla
Hello, I’m not sure if anyone will respond to this by now but I’ve been having all these systems since I was 16 when I gained 80 Lbs for no reason and got the buffalo hump and everyday feels like you’ve already ran a marathon before you even get out of bed...pretty much if it’s a symptom I have it minus high sugar and blood pressure and my body looks identical to the drawings you see of the typical body shape for cushings. Anyways I’m 29 now and have never found anyone with the knowledge to test me and a couple years ago I started having different forms of seizures and I wasn’t sure if any of you or anyone you know has seizures from whatever form of Cushings they had? Another thing to add is at one point I lost most of the weight for no reason or life style change then after having my first kids I gained 100 lbs back instead of just the 80 that was bad enough and it’s impossible to lose it.
Rey
Hang in there folks! No special diet needed to lose the weight gained from cushings. Once the cause of cortisol over production is removed you will deflate like a balloon no matter what you're eating. I went through all of this in 1995 when I had the surgery. The hardest part of it all was before the diagnosis. Fast forward to today, I'm on cortisol hormone replacement therapy. My pituitary stopped producing ACTH. Best advise I have is stay fit, continue to exercise as much as possible - it makes all the difference. I run, bike, kayak, skate and ski - living life and loving it.
Tip - I take collagen supplements. Cortisol destroys collagen.
Be well take care
Rey
Alexis
Wow Catarina - your story gives me hope. I recently started to see a endocrinologist after a battle to get a referral to one.
I gained about 50 pounds 4 years ago after an accident and several coritco shots. I was also on prednisone and had so many wierd things happening.
I've reached out to doctors in tears with a list of symptoms, one even suggest I go to a psychiatrist for being obsessive. The others suggested diet and exercise even if I mentioned having juiced a week and my calorie count being below 1200 consistently for a lengthy amount of time.
The endocrinologist turned me away twice until I sent my list to her and asked if she would please just read it for anything that might stand out.
Surprisingly she called back and suggested the possibility of cushings. Now that I read up about it, that hump that formed on my neck (the far from sexy one..) that is actually a symptom too. So, it looks like we are on the right track. She will be seeing me for another physical exam in a couple weeks and more labs.
She didn't acknowledge the photo I sent of the bulge.....my husband apparently saw it and thought it was just a compressed neck or that I needed to go to a Chiro. I felt like it was swollen but it actually pops up and out. :(
I feel like this is what I have and would feel good to know and on the road to treat whatever is wrong.
Thank you for sharing your story!
Rebecca Heady
I’m 60 years old, in nov 2016 I had gastric sleeve surgery. I lost 100 lbs, I was so proud! but little by little things cropped up, I couldn’t remember easy things. I was a secretary at a nicu unit, I had to start wearing my jacket all the time. My arms were bruised all up and down. (I didn’t want patients seeing them)I started gaining weight. No matter how much I went to the gym. I was baffled. I started falling a lot, got 6 fractures in my pelvis. I couldn’t get any dr to listen to me for months. It took a long time to find out I had a pituitary tumor. By then I had gained 70 lbs back. I was depressed and crying all the time. I’m fighting to get back, but still having problems with depression and feeling cheated. I am finally starting to be in less pain, and I’m going to start with a trainer, I will not give up! I hope you fight till you get someone to listen. Don’t give up!
Leah
Wow! I’ve never known anyone with Cushing syndrome other than myself!! I was 4 years old when I was diagnosed With Cushing syndrome but some of my first memories of my life were being in hospital with it. It’s extremely rare in children. I had a round chubby like face, I stopped growing for a year before my tumour was removed, i grew dark thick hair on my back legs arms face, my hair on my head was ridiculously thick (is still now to this day). My mum took me to the drs because she just had a feeling something wasn’t right with me, it took me over a year and to go to 3 main uk hospitals before they actually diagnosed me with Cushing syndrome as is so rare especially in children. I had my tumour removed which was on my adrenal gland and within a few weeks I was growing again and my face was loads thinner (in a healthy way) I have a huge scar on my stomach even now from when I had my operation. Like I said, I was 4 years old and completely oblivious of what was really going and I was always happy even though I was attached to lots of wires having scans and blood tests every day. I still went to see a dr for check ups until I was 16, im 23 now. All good and I’ve been discharged completely. I just wondered if anyone on here has experienced problems getting pregnant or infertility after having cushings? Me and my partner have been trying for a year, he’s got 2 children I’ve not got any but I’ve never fell pregnant either before. I’ve had blood tests to check thyroid and hormone levels they’re all normal but I have a feeling it’s all because I had Cushings when I was younger. I’m being referred to a fertility clinic for a unltrasound and IVF if it comes to it. I have tried googling but nothing had come up to do with pregnancy AFTER cushings. Glad everyone on here is well!
Kerry Tunnicliffe
Have my endocrinologist appt fri this week been waiting for ever as my GP says all fibromyalgia related high cortisol levels after the dexamethazone test was done HBP constantly . Fatigue swollen belly and swelling in neck hot sweats constantly worse on a night . Puffy Arms and feet . Feeling so unwell like I’m going mad . GP mentioned cushings but then said prob just obese .11 stone . Can’t loose it . have been reading lots about it scared just want answers
Angela
I know i'm a bit late to the discussion on this, but I was doing some research on Cushing's for my SIL and found your website. I was diagnosed with Cushing almost 12 years ago. I had my pituitary tumor removed on Valentine's Day, 2010.
Your story sounds so much like mine. I was so grateful to my endo for asking me about Cushing's. I did the same thing: googled it and almost cried when I realized that was what I had!
I will say it took my body almost 4 years to get back to "normal" (whatever that is :-) ) I had Cushing's for almost 10 years before I found out. I was so relieved to know it was not "all in my head" or that I was "just being lazy." At the time, I was told Cushing's was "incredibly rare." Not sure how true that is thoughn since I seem to see more and more about it online. Which is a very good thing! The more people know the better!
Thanks for the great article and reminder to be positive and keep the faith!
Jo Worbetz
Hi Catarina....I realize you can't answer everybody but wanted to share. I gained 50 lbs in 2 years (after two ankle and a shoulder surgery). I kept telling anyone who would listen that this body isn't ME. (Always been an athlete.)
I just turned 60 and found a compassionate Endocrinologist- currently going through all the necessary tests to confirm a diagnosis. I'm scared but I need to know!
I just hope and pray that the surgery will be successful and recovery will be quick, although I realize it will take time. To EVERYONE- Don't ever give up. I am seeing this to the end. Stay positive! I hope to come out of this even stronger than before.
Randy Meier
My wife who is 67 years old recently had a
Large tumor removed from her pituitary gland. She was diagnosed with Cushing disease. Her weight around her stomach was growing continuously. Her balance and walking was getting worse each day. She became diabetic and had high blood pressure. We had the tumor removed on Friday the thirteenth August 2021. She stayed in the hospital for only 2 1/2 days. Due to COVID patients everywhere. She was more afraid of catching COVID than just having had brain surgery. They let her come straight home. Her improvement has been amazing. Today is September 18th and she has lost over thirty pounds. All from her stomach. In a month and one week. However, she is starting to have balance and walking problems again. And seems to be getting tired a lot again. She tells me it is not the same kind of tired tho. Just wondering does anyone else had these problems. I feel we just have to take it slow and sometimes there will be setbacks but it is very concerning. We will be talking to our neurosurgeon next week. Maybe get some answers. Thank for listening
Sherri
Hello, I’m glad to hear all the improvements people are experiencing once Cushing is diagnosed.
I started having significant health problems in 2018. I had scan done to check kidneys, mine are small, covered in small cysts. Have nephro who says acquired cystic kidney disease stage 3a. Also found cysts on ovaries. High bp, cholesterol, not diabetic but told close. I’ve just noticed in last month my face is getting round. I’ve been putting on weight rather fast. I’ve had sort of a “hump” for few years but I chalked it up to bad posture. I should mention I’ve also got hashimotos but thyroid med was increased this past winter so t4 is 1.7. A lot of my gained weight is around middle, lower stomach. I’ve never had issue gaining there in past. I’m in menopause, 56, so I know how a hot flash feels, but I’m always too hot, trying to sleep is tough as I sweat all over. It’s the same during day, just get hot all over, sweat. The only thing I don’t seem to have are red or purple striations. My face also is little ruddy. I see my endocrinologist as well as nephrologist next month. Does this sound like Cushings?
Janet Toews
Found out Cushing is not just an animal disease. I’m just surprised no doctor (have 2 in the family) has thought of Cushing when they look at me. Is there such a thing as there being times that are worse than other times? I gained and lost 30 lbs. a year, for years. Now in my 70’s it has stayed especially in the areas shown. My friend used to mention my swollen face. Of course everyone thinks I eat fatty foods all the time which I don’t. I walk a lot but it only helps my legs not to be so tired. I tell my doctor I am really skinny inside. Don’t have the memory loss but have a very strong ‘startle reflex’ that I can’t control when my husband drives. Please tell me what you say to your medical doctor in order to be referred to an endocrinologist.
Lauren
Did surgery hurt for you?
james kingsway
Hi I see a great many symptoms that I have in these posts. I am yet to be diagnosed but pretty sure I have Cushings. Getting dex suppression test soon. I have the buffalo hump and fat pads above my clavicle. Chronic pain, lethargy and gained two stone in last 4 months. My main concern though is memory and concentration. Hoping I do have pituarity tumor or adrenal tumor as this has been a nightmare. Does anyone know if after surgery has your cogntive function been reversed and returned to normal.
Every night I want to go to hospital for help because of the body pain and sleep deprivation. A distressing part of all this is how long it takes for diagnosis and treatment plus the not being believed by friends, family and Doctors who are supposed to help. Doctors tend to accuse patients of being hypochondriacs rather than admit they are clueless.
Wishing you all well