My 1st Blog
Hiya everyone! How are u all doing? It's great to be back - it's been a year since I last visited here. At that time I was suspicious I had Cushings Disease from all my symptoms.
I am so glad I've come back because there really is no support like this forum. I would love to hear from u all.
My story is I am 23 years old, female, robust health up until 2 years ago. I first noticed the weight gain, the anxiety/depression and stretchmarks. It is not in my nature to be pessimistic so I assumed OK I've gained a bit of weight maybe from not eating as healthily as I could. I began exercising more, eating that bit healthier though I am not bad already, but things got gradually and slowly worse - my skin wouldn't heal the same, insect bites took forever, and I bruised easily. Particularly on my breasts the skin became thinner. I noticed an accumulation of fat behind my neck, sometimes sensitive teeth when I walked and the worst headaches imaginable on a regular basis. All of these symptoms I searched online when Cushings Disease came up straightaway, I read about it, felt a strong feeling I had it but didn't say a word to anyone. Made an appointment with my Doctor. I thought I might have some sort of immune disfunction and it's actually the differences in my skin which were proof there was 'something going on'. My GP is a wonderful lady, she sat me down, she looked over all my symptoms and let me explain how I felt. I said that Im feeling depressed a lot but I dont have depression, big difference. & I said its just not 'me' to be like this. I have no real reason to be. I also exercise/healthy eat, not fanatically sure, but I said to her I'm not a lazy person who eats and sits around all day. Without me mentioning a word, she said Cushings to me. Gobsmacked I told her I'd been reading about it the previous night online. We talked more about it and how I'd need to see an endocrinologist, but that we'd run a few general blood tests and urine before meantime. The words brain tumour were mentioned which was scary but all along I've always felt that I 'knew' something was wrong, and that I just want to get better no matter how frightened I am.
The GP's blood/urine tests came back NORMAL. I'm just putting Normal in capitals there because in my story I just want to stress what a range of meanings that word actually has.
After some weeks of waiting, I met with my endocrinologist - a lady Doctor. She listened to me, looked me over, took my blood pressure, sat me down to chat. OK - well my blood pressure was high initially then normal the 2nd time she took it - "white coat syndrome" she put it down to. She said I certainly have the symptoms of Cushings but that when a person gains weight and if they aren't eating right all these other symptoms come with it like I have. I argued with her that how can nothing change in my lifestyle but somehow I'm getting all these problems. I cried. I told her that I didnt mean to be rude but that I was telling her there is definitely something going on and it is NOT a simple case of eating too much rubbish and headaches. She was quite dismissive. My legs apparently were "too strong" looking for a Cushing patient. OK at this point I didn't know for sure it was Cushing's but what frustrated me was here was I unwell looking to this Doctor for answers & it was like having an argument whether the sky was blue or green. I wouldn't let her not investigate it further so I looked her straight in the eye and I asked could we do more tests. She agreed.
Blood was taken, urine samples were collected. All NORMAL. I couldn't believe it. How could I be feeling like death's door a few weeks of the month & be getting NORMAL results. Everytime I saw my endo she would battle it out with me and have an answer for everything I questioned. She even suggested referring me to neurology or ENT, that it might be another disease such as Lime Disease etc. I was quickly losing hope and gaining weight at the same time. I still felt like 'me' but just me on a really bad PMS day.
I have to give my endo credit though - she always did agree to do more tests at my request though I had to seriously persuade her.
At another follow up appointment of hearing my NORMAL results, I begged her for an MRI scan of my brain. I was conscious of coming across like a mental patient and tried not to cry infront of her everytime I saw her but it was so frustrating to be shot down. I begged and begged her and she said "if it will REASSURE me she will order me a scan". She said something about how she will have to lie to get me the scan. I thanked her. I got my scan within 2 weeks.
2 days later she phoned me to say they found something - an 8mm pituitary adenoma. She said she thinks its INCIDENTAL as a lot of them are. Meaning it has nothing to do with what's going on with me and that many people live to old age with them not knowing. She actually repeated these words to my Mum at a later appointment. It was not incidental to me. I felt so STRONGLY that my body for some reason was not showing the biochemistry but if they removed that tumour I would go back to being healthy. I've heard a lot of people say this and I agree - getting the news of having that brain tumour was a RELIEF. Now I had something to work with when talking to her.
My next appointment with her was unbelievable. She had a junior Doctor (male) in under her care so he was there for the appt too and it seemed she was doing anything she could to look good infront of him. I challenged her over many things on my results. My urines would be just over the normal and she would blame it on other reasons like a stressful day at work. That appt actually gave me a migraine and I went home to my parents to say I want a 2nd opinion from a new Dr.
I went back to my GP to ask her advice and she said to wait for the results of my bloods/urine with this Endo - I agreed.
It took 2 months of doing blood and urine tests when finally 2 of my urines showed up with ELEVATED cortisol. It couldn't have come at a better moment - I was on the point of giving up completely. I've never had the sort of thoughts I was experiencing during those times, just dark, miserable...horrible.
My endo phoned me, almost excited, to say she thinks we've 'caught it'. It was like talking to a different Doctor! She actually sounded really happy and she said that she wanted me to come into Hospital for a 5 day dexamethasone suppresion test. WOO HOO!!! Since my parents work in the hospital too they came to visit me and I generally felt completely well during my stay. It was obvious to me we hadn't got me in on my cylical days. I wasn't suffering at all - was like staying in a hotel with all the ammenities. My Endo would come round in the mornings with my previous day's results and she said "as suspected your results are NORMAL so its likely we havent caught you in your cycle". Sent home........
...with 60 bottles to fill up with urine!!!
Which takes me up to now. I've already handed in 3 weeks worth of urine which is overlapping what I believe to be my 'cylical dates'. The doctor has gone from completely dismissing me to being incredibly interested, including her team. I still haven't been diagnosed officially though my GP did tell me my Endo phoned her to confirm its Cyclical Cushings. My Endo has mentioned surgery with the Neurosurgeon in my nearby City but no date yet. It's is incredibly frustrating.
I know I'm on the right path now but it's been an entire year of tests and more tests. I know I'm one of the lucky ones though - some people here have had much longer periods of not knowing.
So today I am just waiting for her call saying we have the essential 3rd ELEVATED cortisol. Though she is still referring me I think. I think the problem with Cushings disease is it's not rare but its rarely diagnosed because Doctors want to investigate and investigate sometimes at the patient's expense I believe. They seem to think we don't know our own bodies which we've lived with for many many years. My symptoms are getting worse - I've started to grow hair more on my arms and now starting on my face. I'm wondering how much longer they're going to leave me, it's a living hell some days.
I just can't wait to go back to how I was. I checked out my buffalo hump in the mirror tonight - enormous as if I have a ball under the skin. I've had to give up work because my excruciating headaches and mood are so temperamental that I was phoning in sick to my job on a regular basis.
What angers me about my entire experience with this so far is - I had to push the Doctor. OK I cant be angry with her because she was simply delivering ME my results which were NORMAL as we'd not caught the cycle. But if someone has all the symptoms they could well have it CYCLICAL so she should have taken more initiative to test me further. She did but the momentum wasn't there on her part and I felt totally by myself. THANK GOD I AM A STRONG MINDED PERSON WHO TRUSTS HER GUT.
Some thing I've noticed which is different about me too (which is embarrassing) but I can't not include it. Are any women noticing their sexual orientation altering slightly? No joke. All my life I've thought I was straight but since the onset of Cushings (it could be absolutely nothing to do with it) I've noticed I'm developing girl crushes. & I dont know if hormones is anything to do with sexual orientation - perhaps that is an arrogant statement but I was thinking if its extra testosterone or something. It's very very odd. I almost felt like asking my Endo but I was too scared to.
Thank u to anyone who reads this and replies xxx
& I just wanted to say at the end for everyone to please watch this clip on youtube of a remarkable lady who is so inspiring
When I speak for myself, she has been through so much more pain that I can ever imagine but yet she is so unbelievably positive. She is amazing to me and she makes me think that there is nothing to worry about in life. I thank her.