Monday, March 28, 2016

Cushing's Frequently Asked Questions (FAQs)

Happy Spring! Hope you guys are doing well, and if you are not.. You've come to the right place to read and connect with my struggles and experience with Cushing's. Remember to check my 2013-2014 blog archive here: My surgery and recovery experiences to read posts I made during my sickness about diagnosis-recovery.
                                     ------> SCROLL DOWN FOR FAQs
So this year I've been so busy with moving on from all things Cushing's now that I have recovered, I finally finished school and I also have a job now. It's quite nice to push myself out of my comfort zone and seeing myself grow and living a fuller life than when I was sick. I still have low days and working long hours can be very tiring to the point I will sleep all day on my off days but so far I have tried my best to balance it all. I have also been pushing myself to socialize and try new experiences and it feels great. Let's get into the main point of this entry..

Ever since I have made my Cushing's story available online, I have been getting a lot of people contacting me whether cushies or people who think they might have Cushing's asking me questions about my experience. And as my schedule is more demanding these days, I don't get back to my emails, direct messages etc as quickly as I use to and often I don't give in depth answers when I am busy or I forget so I will make a frequently asked questions (FAQs) here. I hope this answers most of your questions and if I am missing something you want to ask, feel free to email me at yumnguyen07@yahoo.com


                             Frequently Asked Questions

Q) How long have you been sick with Cushing's Disease/Syndrome?
A) My doctor told me he thinks I've been sick with Cushing's Syndrome for about 4-5 years. I can almost pin point the time was when I was around 18 years old was when I started having irregular absent periods. and started to feel the mood changes like depression and bouts of crying over little things in life. I started to feel withdrawn and socially awkward and had a lot of racing anxious thoughts. Every year symptoms grew stronger and I grew more confused about myself and my life til the breaking point of the year I got diagnosed which I was 24 at the time. 

Q) What were your symptoms?
A) my symptoms were depression, anxiety, rapid heart beat, high blood pressure, weight gain, moonface, severe acne, no menstrual cycle, orange hands, muscle loss, fatigue, heavy eyes, suppressed allergies, weakness, hirsutism, bruising, poor wound healing, hairloss, short term memory loss, belly fat, small buffalo hump,insomnia, restless, PCOS, frequent debilitating panic attacks.

Q) What doctor did you see?
A) Before getting diagnosed, I went to see several family doctors who ignored my complaints and told me I had  depression and needed antidepressants and some told me I had PCOS and needed to get on birth control pills. Overall, most tried to treat my symptom but not the root cause. Some just told me I looked fine and sent me away. I finally went to see a endocrinologist aka hormone doctor and he was still skeptical but I pushed him to test me for everything under the sun and he agreed. Upon seeing my cortisol results were high in a blood test he decided to further test my cortisol.. My doctor works at houston thyroid and endocrine specialist his name is Dr. Elhaj.

Q) What tests were taken? How did you get diagnosed?
A) Diagnosis for me was in the course of 3 months of testing, results, retesting.. I took a Hormone blood Panel, Blood cortisol test, 2 dexamethasone suppression test, saliva cortisol test, 24hr urine test, and lastly when my doctor found out where my tumor was secreting from, he ordered me to get a CT scan of my adrenals and found a tumor on my right adrenal gland. (Some patients may have to get a pituitary CT scan if that is where your tumor is as majority of cushies get pituitary tumors and some rare cases lung tumors.) Also it's always good to start off with a simple cortisol blood test but even better to get all your hormones evaluated to rule out other conditions.

Q) How did you cope with Cushing's and while waiting for surgery?
A)  I think the most challenging part was before getting diagnosed and just struggling internally wondering why I felt terrible and looked terrible. I blamed myself a lot and felt so much shame. I was terrible to myself and drank alcohol as a way to cope. During diagnosis I was impatient and annoyed for having to take so many tests, spend money and wait what felt like long weeks until I got my results. The feeling of not knowing would eat me up inside for months.. When I got diagnosed, I accepted my fate and felt like a huge weight was lifted off my shoulders. I learned the lesson of patience and gratitude and how grateful I am for my doctor making me take all these tests. I started to tell myself that it was not my fault that I am sick. I gave up on fighting myself and decided to love myself more. I took a break from socializing and school since it was too stressful getting panic attacks in public. I told my family and friends but needed space so I took time off from everyone to just be on my own.

Q) What type of surgery did you have? When was it?
A) So after getting diagnosed, I worked with my endo to schedule surgery and find a surgeon. (Always work with your doctor to find the best treatment route for your situation) You basically can shop for the lowest price surgeon and choose who you want to perform your surgery. You can also contact NIH Cushing's research in Maryland if you want them to take on your case and sometimes they will offer help if you qualify for their Cushing's research. I found a surgeon named Dr. Suliburk and he has been experienced in doing tumor removal for Cushing's patients. He performed a Adrenalectomy and removed my whole right adrenal gland since removing the whole gland guarantees the tumor will not come back. It was performed May 8th, 2013
 you can read about it here: My adrenalectomy

Q) How did you feel Post Op?
A) I felt nauseous and like someone punched me 1000 times in the stomache. Hard to eat due to nausea a few days and still very swollen since they injected me with more steroids just in case my body goes into shock from having no cortisol in my body. I was sad and disappointed because I had no patience in myself. I felt worse and wondered when I would start feeling and seeing improvement.

Q) How long til you Recovered from Post Op?
A)  I was in the hospital for 3 days because I had some bladder issues that needed to be resolved before they could release me. Day 1 was hard to walk or eat. Day 2 I walked and ate a little bit still very nauseous. and when I was released from hospital I was at home laying around eating soup  About 2 weeks I started to feel better and 8 weeks my wounds healed and I went swimming. I tried to walk 15 minutes daily and had bouts of nausea throughout. So healing from surgery is easy part, recovering from Cushing's is the hard part..

Q) How long til you recovered from Cushing's Disease?
A) Approximately 18 months til my remaining adrenal gland started producing cortisol again

Q) What was your Recovery like? How was your Adrenal Insufficiency?
A) Very challenging.The first 2 weeks post op I could not do anything because I would feel dizzy, nauseous and want to faint. I started off on hormone replacement therapy with 30mg of hydrocortisone to supplement for morning and afternoon. If I missed a dose, I would feel terrible and start showing signs of a adrenal crisis aka my body shutting down from no cortisol hormone.. I also tried to cut down my steroids too soon and had a adrenal crisis filled with faintness and trembling. I had night sweats and loss of appetite. My depression felt more severe and I cried often. I no longer had the moods associated with Cushing's but I was always just very sad and had low energy.. I had highs and lows throughout and til this day I still have side effects of fatigue some, acne scars, tiredness, irregular periods, low moods.

Q) You seem to recover fast, When did you notice symptom improvements during recovery?
A) Trust me when I say I did not recover fast! Doctors said I was not extremely overweight because I also was an athlete most of my life, young and was on a strict diet for years prior to getting diagnosed so I had more muscle mass and bounced back easier. but it took me a full 2 years to fully recover. The first 3 weeks I noticed my moon face was shrinking. At 3 months there was a huge improvement on my moonface and I started seeing weight loss. At 6 months I started to look like myself and had more energy and adapted to adrenal insufficiency and was at my lowest weight since highschool. In one year my depression and anxiety improved but still had not gone away. My insomnia improved and I started taking naps which I never did before. My period returned even though still irregular I got it every 3 months or so. started getting restful sleep. Joint pains still happened but mainly during the cold. In 1.5 year Muscle mass increased. I continued school and started socializing. Acne was gone, had severe scarring. Hair growth started. Blood pressure improved. fatigue was improved. Better moods. less hirstutism aka body hair, it literally just become thinner and less noticeable. My allergies returned which is suppose to be a good thing since cushing's suppressed it for a very long time. Increased energy. Everything improved all the way until the 2 year mark was when I felt almost fully like a better version of myself.

Q) How did you cope during recovery
A) As hard as it seems, you have to be nice and love yourself. You have to avoid stressful situations at all cost. Cut out all the negative people in your life who are neither supportive, encouraging or too selfish and only looking out for themselves. Don't let bullies get you down. If people talk shit to you or put you down, that means they are an ignorant ass hole for putting down a sick person. Surround yourself with supportive people even if that circle is very small. Animals help you feel better by offering unconditional love. Remind yourself that even though you feel terrible, there will be lots of highs and lows during recovery. nothing worth having comes easy.  Be patient, laugh often, watch funny movies, do things you enjoy. You don't have to be okay for anyone just do what makes you feel good. People don't have to "get it" so don't waste your time proving anything to anyone. Take lots of progress pictures and compare before and after pictures to see how much better you are and it helps remind you that you are getting better. Try to sleep and drink lots of water and eat your vitamins. You will have bad days lots of bad days but as time goes by you will have more good days and it will start to feel consistently good. Don't get in the way of yourself and  Let yourself heal.

Q) How did you taper/ wean off steroids (hydrocortisone)
A) SLOWLY and small increments being tapered off. I was on hormone replacement therapy on Hydrocortisone. I started at 30mg and after a month I went to 25mg then another 3 months I went to 20mg then another few months I went to 15mg. At 15mg was where i struggled to lower the dose and started feeling very sick with adrenal insufficiency. So I stayed there for a while and during my last 6 months before I recovered, I went down to 10mg then at 5mg was when my remaining adrenal gland woke up and started producing low amounts of cortisol. Still I was taking hydro on and off when my levels felt too low. I still feel like I have low cortisol days but I try to adapt without the use of steroids now.

Q) You look skinny, Did you go on a diet/ exercise routine?
A)  I may look skinny but I still have belly fat which I do a good job of concealing in clothes and photos but my stomach and overall body fat has decreased greatly. I did not diet post op but did lose a lot of bloating, water weight and fat overall since I was no longer producing high amounts of cortisol and was adrenal insufficient. I ate whatever I wanted however I had loss of appetite so did not eat big portions. I also took 15 min walks everyday and slowly worked into 30 min walks. As a past athlete, I no longer have any stamina or endurance so I don't really do high strenuous/high impact activities like running. Maybe eventually I will train my endurance again. Also in my previous answer, I had more muscle mass than the typical cushie and my doctor credits it to youth, healthy eating, exercise and being an athletic most of my life. So I did not gain as much weight during my sickness I was about 20-25lbs overweight. Now I go for hour long walks my dogs, go to the gym twice a week mostly weight training. And though I am not eating the healthiest diet right now I avoid sugar on weekdays carbs and try to cut back calories when I over indulge the day before. I think portion control and watching sugar is the most important thing for me. But everyone is different so do what works best for you and make sure everything is in balance.

Q)What can your friends, family or spouse do?
A) Before I was diagnosed, I felt like I was being misunderstood often and was judged for how I looked and my anxiety ridden behaviorFriends said I was acting weird and sometimes gave me weird looks as if they were trying to figure out what was wrong with me, some family members called me fat, my aunts and grandma tried to give me advice on how they cured their acne. They even started making theories of why I got sick. All of that stuff really adds up stress and made me feel ashamed and I would react by anger, having panic attacks or feeling more depressed. Once I did get diagnosed, it seemed that everyone started to be a lot kinder to me but at the same time they still had to give me advice on how to be... I told most of them I needed my space and to support me if they wanted to but don't tell me what I should be doing to help "fix" myself. The only person who was very supportive to me was my boyfriend. At first we fought a lot because he didn't understand my issues but he became a full time care taker once I was diagnosed. I know being the spouse or caretaker is not easy. And So I asked my small support system what they want other spouse, family or friends to know, in their words they said, "to have your caretaker/spouse/family be educated on your condition and be very patient with the recovery. There will be times that its too much but understand you cannot break down. You have to be strong for them and support them til they recover. Be positive in the recovery and don't be negative. If you see signs of a negative enviroment or people remove your loved one away from it. Seek help to those who will support not criticize every decision you make." 
I am very thankful that my support system decided to stick around and be my rock and shoulder to cry on. They were selfless and now we have gotten through this hurdle together. Now our relationships has gotten better and we thrive on new experiences together. They would not have changed a thing and were glad they stuck around through the bad times so now we can have great times together. They are shocked of how well things turned out and even how much my physical/psychiatric improvements progressed in recovery.

Q) So after all that happened, How do you feel today?
A) Overall I feel great. I am back to living a fuller life. I still have days of low energy and other non related health issues but the most important thing is that I have my mental clarity back so I cope with problems much better. I have come to terms with all the loss and grief I felt during my sick cushie days. I learned many lessons and have gotten stronger as a human being. I have more compassion for others and find much fulfillment making others feel better with beauty, health, cushie advice, blogging, and being positive. I learned to be more patient in life and that nothing is always what it seems. I judge less and embrace every soul that comes into my life. I am grateful to have been through this journey and met some awesome cushies and new people along the way. I want to thank all the recovered cushie patients who shared their story, replied to my emails and helped me during my time of struggle. The reason I am so public about my journey is because I have a theory that this disease isn't so rare and more people have it that are going undiagnosed because it's still a mystery and unknown. Thank you guys for reaching out and telling me your story and using me as a tool in your journey. I will always be here to talk and help you go through whatever struggle you are going through. I have been through it and know you are not alone.

Q) Do you have any other advice?
A) As far as those having trouble getting a doctor to listen, make a list of your symptoms. Show them a photo of how you looked when you were healthy so they have a point of reference and can visually see how your features changed. Never take no for an answer and keep fighting for your health. Get second opinions if the first doctor is not being useful. Find the root cause of your health issues. Find a endocrinologist with experience with Cushing's patients. Also I always remind others to take lots of progress photos to remind yourself you are recovering. Remember always that there will be bad days and good days ahead but you will get better. Also remind yourself of the the things you'll be able to do once you recover. Plan a trip, go to the beach, train for a marathon, start a hobby, do something you've always wanted to do but was afraid to. Be kind to yourself and do not blame yourself for anything. Let go of anything you have been holding onto that hurts you. Forgive yourself and others. Don't be ashamed of being sick. I didn't know then but during all of my  hard times were the times I had the most personal growth that helps me cope with life better today. Embrace the whole process and keep looking forward.
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My severe Cystic acne. I have a blog post about acne in 2014 archives
The right pic was when I was about 15 months into recovery still adrenal insufficient and lost alot of weight/muscle



Me Today! :)

9 comments:

  1. Very informative. Thanks for sharing sweetheart.

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  2. I just wanted to say hi and I'm glad you're doing so well! I need to catch up with you one of these days, I have been staying pretty busy myself. I'm doing well but still not 100 percent and still searching for answers. Keep in touch!

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  4. Thanks for sharing of your cushing story sissy sweetheart I learned from it, i have cushing syndrome too

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  5. I'm having Cushing's disease which caused by pituitary gland. This is my 2nd tumor 😥

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