December 31, 2014
Adrenal, In Memory, Pituitary, Steroid-Induced, Success Stories, Undiagnosed bios, cushing's, review Leave a comment
The WordPress.com stats helper monkeys prepared a 2014 annual report for the Cushing’s Bios blog.
Here’s an excerpt:
The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 44,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 16 sold-out performances for that many people to see it.
December 11, 2014
(SLE) Systemic lupus erythematosus, Fibromyalgia, Other Diagnosis, Steroid-Induced Adrenal, Buffalo hump, cortisol, dizziness, fatigue, Fibromyalgia, flushing skin, headaches, insomnia, leg pain, marajuana, migraines, MJ edibles, Percocet, Prednisone, rheumatologist, saliva, Systemic Lupus Erythematosus, Tramadol, tremors, weight Leave a comment
Hi! My name is Helena (hummerbird). I am going to be 60 next week, Nov 16. I have come full circle with this.
I knew I had adrenal problems 12 years ago when I got stuck in the ‘fight or flight reflex’. I paid to have saliva tests done and it showed that I was dumping cortisol into my system early evening with my lowest point being 6am in the morning. I showed my allopathic doctors the tests but none would put any stock into saliva testing and just blew me off (this was 2002).
Some of my first signs were extreme insomnia yet when I did sleep I would still feel extremely fatigued, flushing of the face, neck, chest, and back, weekly migraines and daily headaches which started after I was 45, unexplained weight gain, crazy buzzy internal tremor adrenaline smacking (I could actually taste it!) jitters that would not go away, hypersensory (especially to light and sounds), feeling painfully sunburned even though I had not been out in the sun, pain in my legs going way beyond restless leg syndrome, totally fearful of everything, developing a hump between my shoulders and a host of other symptoms.
I was first diagnosed with fibromyalgia 03, then SLE Lupus 09 (positive ANA but no markers).
We moved to Colorado in 2012 and then back to Oregon 2014 and when I saw my rheumatologist again after 2 1/2 years (Oct 2014), he said it looks like you have Cushings? So at the moment I am suspected to have Cushings. I have been reading up on it and I am totally textbook (including the fact that I could literally step into the profile of the picture of the woman with Cushings).
Not sure if this is drug induced or if the prednisone finally brought out the demon that’s been tormenting me. My rheumie wants me to slowly wean off the prednisone. My dosage was 5mgs per day unless I was flaring (dealing with horrible muscular pain and internal tremors) then I was to do a step down starting at 30mgs back to 5mgs. I probably do a step down every other month.
My internist in Colorado wanted me to get off my Percocet 10/325mgs 4 times a day and try to deal with the pain. For the first time in my life I used MJ edibles to get off the Percocet with only a week of hard withdrawals. I was on the MJ edibles for 3 weeks until I realized I was allergic to it! I now take 2 Tramadol 50mgs 3 times a day to control pain. On the negative side this is not working because I have too much breakthrough pain but on the positive side I have a clearer head (I’m able to focus and read again!).
Over the years my days have gone from one ‘down’ day a week to a whole month of down days. I have lost my quality of life and pretty much my social skills. My venturing now is from my bed to the bathroom, kitchen, and possibly my recliner if I’m not feeling too dizzy.
I have three saints in my life, my husband and my two girlfriends who take care of me. I know that God has a plan for my life and I have faith in knowing that I’m going to feel well again some day. It has been a long and expensive road to travel to get to this point. I am not looking to have Cushings but it is a diagnosis that finally fits completely. I’m looking forward to meeting the support group.
Love you all and thanks for taking the time to read my post.
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December 8, 2014
Hashimoto's, Hypothyroidism, Other Diagnosis, Steroid-Induced, Undiagnosed ACTH, cortisol, epidural, Hashimoto's, hypothyroidism, pre-diabetic, steroid, undiagnosed Leave a comment
Hello. my name is Lauren. I am currently being tested for Cushing’s and am scared.
I have hypothyroidism/ Hashimoto’ s auto immune disease. Also my sugar is pre-diabetic.
I am 53 years old. I don’t have a lot of the symptoms. I had gone into my endo and told him how rotten I feel. So he started with some testing. My ACTH number was 278 and my cortisol was 19.
This was around the middle of November.
However, in August i herniated a disc. I have been on oral steroids for 5 days in August, a epidural steroid shot in my back in August, had back surgery end of September and put on a steroids for 5 days and had a steroid shot in my knee in October. Also on a lot of pain killers and meds. I am off all meds for the last 4 weeks, off pain killers since October.
Also, I have had a very stressful and sorrowful last 10 years. I buried my 22 year old son 2.5 years ago.
I am hoping this is causing the reading.
I am glad I found this site. Thank you for reading this. I pray we all get well.
Thank you,
Lauren
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December 6, 2014
Pituitary, Pituitary Surgery, Treatments 24-hour urinary free cortisol, ACTH, adenoma, anxiety, cortisol, depression, endocrinologist, hirsuitism, kidneys, pain, pituitary, saliva, sciatic nerve pain, testosterone, tongue, tumor, UFC 2 Comments
Hi! My name is Tiffiny. I am 34 years old. I was diagnosed with anxiety and depression back in May because of weird pains in my back and on the right front of my stomach. I thought something was wrong with my kidneys and sciatic nerve. I kept getting weird tingling in my legs and face. I was told it sounded like anxiety attacks, which I am sure they were. I am stressed all the time and I don’t know why. I am also very short tempered. I was prescribed meds but I didn’t think I was depressed or have anxiety, so I didn’t take them.
About a year ago I started having weird things going on with my tongue. Every time I would eat anything my tongue would burn and wouldn’t quit bothering me. I noticed that I had white, longer looking taste buds too. I thought it was something I was eating so I kept cutting out foods. Nothing was helping, is it anxiety, is it my imagination, what is wrong with me? I googled burning tongue and lots of things came up, geographic tongue, burning mouth syndrome, and thrush. I decided on August 17, 2014, to go have a doctor take a look at it. He diagnosed me with thrush. I was treated for two weeks. The meds seemed to help but the burning was still there. A month later, one of my kids had a doctor’s appointment. At that appointment, I asked the doctor then if he thought the thrush went away. He said “no it looks like you still had it.” I mentioned to him that I also have major peach fuzz on my face, lots of darker hair on my belly, and darker pigmented spots on my face. I thought I had too much testosterone. He thought my body was for sure out of whack because of the thrush and ordered a bunch of hormone tests. I came in the next day and had my labs done. This is when I found out I had high cortisol!! My results were 28.5 should be between (6.2-19.4). Okay, what the heck is cortisol?? He referred me to an endocrinologist to have it checked out.
The endocrinology appointment was scheduled for November 3, 2014, three months later, really! I put myself on the cancelation list and got in rather quickly, September 30. Thank goodness because I am a severe stress case! At the endocrinologist visit, the doctor walked in and said “wow, you are not what I was expecting.” He started talking about the symptoms of Cushing’s syndrome. I am 5’3, 110 pounds, an avid runner and I eat pretty well. I do have very thin arms with bulkier muscles. My veins do poke out on my lower arms and are very visible, very dry hands and red fingers. The red hands/fingers started about two or three years ago which I was told it was Reynold’s disease or some skin condition. The red hands bother me very much, they look very old for my age and it is embarrassing. The doctor then ordered me an ACTH test and two 24 hour urine tests because my blood cortisol results were very concerning to him. Both tests have confirmed Cushing’s. My ACTH levels indicated that it most likely is a pituitary tumor. I was ordered to have an MRI a week later and they found a 6.5mm to 7mm. tumor in my pituitary gland. At this point I was referred to a neurosurgeon.
I met with the neurosurgeon a week later. Their pituitary clinic happened to be the following Friday and they only do it once a month, which happened to be on Halloween. He ordered two more night time saliva tests, a week a part, and the results where two and three times past the limit. I am now scheduled for surgery on Dec. 9th and I am totally freaking out. I do notice weakness in my muscles and have an achy body sometimes. My hair on my head has been falling out a ton for many months. I thought it was from nursing and a bad hair coloring! I keep finding more symptoms I really didn’t notice. Face is getting rounder on one side, I am shaky, cold all the time and believe I am losing feeling in my fingers. It is very hard to distinguish between hot and cold, I have to use my arm. My memory is horrible! I do get acne under my chin and on the sides of my jaw. I get obsessive about everything! I am very antisocial, think everyone is judging me or looking at my face hair, hands, etc. I feel so bad for my girls and husband! My obsession with my tongue and peach fuzz has hopefully saved my life! Trying to be POSITIVE for the steps forward!!
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