Low Cortisol Level 1 Year Later =(

I thought I was making more cortisol but nope... As a matter of fact my cortisol levels went down from my test from 3 months ago. It looked as if my levels were raising up probably because of residual medications. I am wondering why it's taking my right adrenal such a long time to work? Oh well. It still explains alot of why I feel nauseous, weepy and fainty often.

My Sister and I were Diagnosed With Cushing's: MALE Cushing's patient

Meet Gabriel

The year was 2007 I was age 16 I woke up like any other day went and played some games with my friends. That night, something happened. It began with a small pain in my side that grew stronger and stronger we went to the hospital thinking it was appendicitis. It wasn't after a few tests and the pain not going away they (doctors) were stumped as to what it was. I stayed in the hospital for about three weeks getting tests done and nothing was found the pain stayed the only thing that was wrong was my level of cortisol was slightly elevated.  A few months went by and many doctor visits later nothing was concluded. Doctors were doing random strange tests and nothing. One doctor wanted to start treating me for Addison’s disease which is the opposite for Cushings but they were on the right tracks. About a year went by and test after test being negative I was diagnosed with Fibromyalgia my body was exhausted and my mind was numb. After a year of testing to be told nothing's wrong really made me sick. But like always, I moved on from it. I rolled with it and I was treated for fibromyalgia with the help of sleep aid and the knowledge of certain things that can trigger intense pain episodes.  Around the year of 2009 my sister was diagnosed with a brain aneurism and had surgery. The doctors who were doing her tests noticed a small link between mine and her results .She recovered from her surgery. And began seeing an endocrinologist after a few months of testing she was diagnosed with Cushings. During this time of her surgery and testings I was trying to finish highschool and start college. The year was now 2011 I was living my life with fybromyalgia but I began getting sick I remember having an adrenaline rush and nearly passing out because of it something wasn't right we were for sure of it. I began seeing my primary doctor letting him know what was happening. I had weight gain, low immune system, blackouts and pain. The doctor’s response was I was depressed. Cool story right.

I sucked it up and dealt with it for another year. My sister was diagnosed with Cushing’s and my parents noticed we had similar symptoms and started and put two and two together. I made an appointment with my sister’s endocrinologist and she noticed right away that something was wrong. For me, I felt joy that someone was going to help. She noticed the straie on my neck and underarms and jotted down my symptoms which included bone pain, muscle weakness, excessive urination, thirst, fatigue, headaches, thin skin,  and bruising. I was text book Cushing’s.  They immediately started testing me for Cushing’s. My first urine test was the worst they have ever seen. My cortisol was sky high at a level over 70. Other family complications that happened through the year put my treatment on hold. Meanwhile my sister was able to participate in a cushings study with a medication that was new to the market called Signifor, it was a daily injection that had the chances of shrinking and stopping the growth of the tumor. After a year, her results were great; she lost weight and looked healthy. I began going back to the doctor and had more testing. My cortisol was really high around 60s. The levels made my body constantly tired and sent my body into over drive. I did an MRI and Dxa scan. They stuck a tube into my brain to see where the leak on the pituitary is. 3 months later my results came back and the conclusion reached was that I had Cushings Disease. I had multiple tumors but none were visible. That was why my body was shooting out cortisol. My life flashed before my eyes. Years and years of waiting, crying, and testing I finally had my answer. I got into the case study for CD.

 I was the only guy in my state to be diagnosed with CD at the age of 22 and my sister 19. We were the talk of the town. Unfortunately testing requirements were very complicated and I decided not to do the study and instead go for the medications. It took a few months to get the medications since they were new and pricey. It was okay to wait since I’ve been waiting for years. After 7 weeks I got my first order of Signifor. I began taking the injections. The first injection made me vomit and I continued to vomit after for two weeks. One morning I woke up smiling, I no longer felt a lot pain in my body and my mind felt clear.  I was on the road to recovery. After 2 months of taking the medication I feel great. My mind is right; I still have pain for fibromyalgia. I had my first adrenaline rush and didn’t pass out. My mental status is good I have always stayed positive despite what has happened. I keep my mind away from the depression. Now life is falling into place. The next thing I need to worry about is what to do in life without wondering if tomorrow will be my last day on this earth.

Sexy Pictures of My Test Results!

Haha jk about the sexy part. Some people like to post sexy "selfies" but I will post bloody test results! Hey, I put hearts to make it sexier lol <3 The blood test results are in and drumroll..... 

 

^^Lol nothing much to see here but last month I was .03 So that is something? Unless it's just residual medication I took the other day prior to drawing blood. Hope not. I was at .03 three months ago.. I get nervous before bloodtests not because of needles but I still feel iffy these days so if my adrenal gland was to normalize I would be dissapointed that "iffy" would be the new normal I have to live with.. But the test confirms the iffy feelings. Still long ways to go. I am feeling better than before so let's keep rolling with the good times & improving. Still got my patience socks on. If that is the only thing I learned from Cushing's then it would be a good lesson of patience. Yeah, for those who have experienced major illness ya'll know that getting sick is only the beginning. Now there are other concerns that are raising up. The doctors told me this would be expected to find underlying problems after since Cushing's masked alot of underlying problems with itself. For example my allergies came back. But that's the least of my worries. Sounds like a sad broken record but I'm sharing my truth and that's what's up.

The dizzy spells are still here. I feel light headed and numbness on my chest and face often. It's worse when I'm hungry or tired. My PCP told me my white blood count (WBC) is low so we are going to investigate.. Health is a tricky little equation..

 
I went to vacation last week and I could not be as active and snorkel or walk too much. But it was still a great winter escape nonetheless. Wish I could stay there forever! I'll post up some pictures next time but I'll preview a real sexy picture down here. =]

Sexy Paradise eh?

Oh Bloody Heck I'm still Young!

Today I went to get blood work done yay my favee!! My docs instructed  for me to not take my meds for 24-48 hrs. We will see the results next week if lazy lefty decided to wake up yet. But omg When will I ever get over the fear of needles?! The guy who took my blood had trouble finding a good  vein to stick the needle in and he said I have dainty veins. umm dainty?? lol I just told him to please please hurry up and get it over with. Anyways I was told to avoid stressful activities since I won't have the cortisol in my body to cope. but a bloodtest in my book is a stressful activity has now become my regular friend.

I mentioned some time ago my struggles of coping and  fearing the Cushing's will return. I don't want to go on anti-depressants or anxiety meds. So I went and talked to a behavior counselor and he told me it is often normal for an ill patient to feel that way though they are surgically "fixed". It's kind of hard to feel fixed when the symptoms are still there. Though my surgeon still reminds me that I am more than good lol Some people think it's just simple surgery and the problem will be gone which is not the case with the Cushing's patient. He did say that it is very rare for a young person to become this ill and usually it happens later on in life when people are wiser and can cope with a big stressor like illness, surgery, and death. He explained I'm still young and I was suppose to see my elders get sick first instead it was vice versa and he told me that this major event was equal to losing a limb or death of a family member. His advice was that I need to accept that it just happened and I did nothing wrong And like everyone else, he advised me to only do things that makes me feel good from now on. Yes I agree! Life is too short! I was already trying to do that but it is definitely easier to navigate and follow instructions from someone with this kind of insight. We talked for a long time and it did help me feel better even though some symptoms are still present. I am still learning about what I can handle. This week due to low meds: My joints are having sharp jolts of pain but manageable and the dry itchy skin is crazy, not manageable! I've been feeling more tired and have been sleeping a lot. I am so happy that I can take full naps now! Excitement due to good or bad stress leaves me feeling exhausted. But that is good I can take more naps! lol I cut myself chopping an apple and it hurt like hell! I have a headache but not as extreme as usual. The moments of mental clarity are still improving but  improving ever so slowly. Thankfully the people in my bubble aren't pressuring me to recover quickly even though I have wild expectations for myself. As the smart Dr. Seuss once said," those who mind don't matter and those who matter don't mind." =]

Strange Disease, free surgery, bad test subject

During the time we were looking for surgeons, another recovered friend refer me to contact The National Institute Health. NIH has been studying Cushing's disease and syndrome and offer free surgery to patients who fit their protocol. I sent in my medical records weeks ago and the other day they contacted me accepting me as a case study.  I would love to help others learn more about this disease and what causes it, but I already had the operation so I had to decline. I read up on the study and you get subjected to different tests for a week prior to surgery, I already didn't do well with the bloodtests and catheter experiences at the hospital. I would have been a terrible test subject! lol But it is good to know there is a place a Cushing's patient can go if they cannot afford surgery and I hope they can find the cause of this strange disease. I am working on a recovery entry and will post before/after pics soon! Here's a pic of my doggie showing his night time support <3

One day soon buddy...

Patience and support

Well another week of not feeling alive but merely waiting. On Wednesday we went to see the doctors at the endocrinology clinic. My endo referred me to them to help expedite the surgery. When we got there, many doctors came into the room and examined me like I was a new species or alien lol. They kept coming in and out and told me it's rare for them to see an adrenal tumor cushing's patient and each one of them asked if they can examine me. I found it amusing so I let them poke and pinch me. This one lady kept pinching my cheeks haha. She told me "remember the depression you're feeling is not you but the cushing's, keep that perspective!" The good news is they will request for urgent surgery. The bad news is there is only one specialist endocrine surgeon on staff who was not there so they are referring me to go see him sometime next week. They also ordered more tests. Sighh more Lab testing and waiting... At this point I just feel like i'm at the end of the race but I cannot get enough steam to pass the finish line.

Then I was looking at the Cushing's book they gave me and all the symptoms listed I'm going to rate the symptoms (1-10) of what i'm experiencing:

• Fatigue -9 (hell yeah)
• Muscle weakness -7
• Depression -6
• Anxiety -10 (yup)
• irritability -7
• Loss of emotional control -6
• Cognitive difficulties -9 (like a goldfish)
• Poor short term memory -9
• New or worsened high blood pressure -8
• Glucose intolerance that may lead to diabetes -7 (pre diabetic)
• Headache -8 (24/7)
• Bone loss, leading to fractures over time -8
• Thicker or more visible body and facial hair (hirsutism) -6
• Balding -0
• Irregular or absent menstrual periods -10 (since I was 17)
• Weight gain in the face (moon face) -8 (chipmunk status)
• and between the shoulders (buffalo hump) -0
• Upper body obesity and thin arms and legs -5 (gained 10 lbs in 6 months)
• Pink or purple stretch marks -0
• Thinning, fragile skin that bruises easily -8
• Slow healing of cuts, insect bites and infections -8
• Acne -8
• Increased thirst and urination -10

Yep that's the wonderful gifts all wrapped up into this condition. The symptoms come on rapidly so everyday I struggle with finding balance and controlling what I can and cannot do. The mental disturbances are the worst and I find the anxiety very challenging to control. For now I try to find the "happy" in my day to fight off this stupid syndrome. I count my blessings and remember what people tell me, that this is only temporary and very much reversible and I am lucky my tumor is on the adrenals rather than pituitary. I'll try to be patient as much as I can and know that everything happens for a reason. I am thankful for the people who are supportive and making me feel loved through this process. I don't think I would make it through this time without my support system. The other day I woke up to a sentimental text from my SO that made emotional.

Muffin has been so supportive and loving than I could ever imagine during this time. To know that he will stick by me through sickness and love me at my worst is a sure validation of our relationship. There are stories of husbands leaving their wives because they could not handle their wives cushing's manifestations and that is the saddest thing. I can't even imagine the hurt, especially with the deep depressions one can experience. To leave when someone needs you the most is heartbreaking and those type of men who try to take the easy way out deserve to go to zombie hell. They will regret that very much one day and their recovered wives will have moved on, happy, out living their brand new lives. There was more I wanted to blog about but I forgot. Alright I think I'm done for today my brain is tired. Here's to patience and support.