Cushing's Info

Now where do I start? My Dr's and I think I probably had Cushings from the time I was a teenager. I had anger issues for a long time and seemed to fly off the handle more easily than other teens my age, the normal teenage stuff but "more". I wasn't overweight until I decided I was going to go on the contraceptive pill at 16 then the weight flew on, in 2 years I gained 4 stone (56lbs) and went from a 8 and a half stone (112lbs) to 12 and a half (168lbs) and my blood pressure was getting high, I was getting headaches and was told to stop taking that particular brand and changed to another. I had to stop taking the new one after a week as I became psychotic and paranoid - of course I was told that the pill couldn't possibly have anything to do with that but I stopped taking it and mentally I was fine again - still moody, but otherwise back to "me". Only problem was, the weight wouldn't shift, but my bp did go down to normal.

I left home at 18 to move in with my husband (boyfriend back then) and the weight kept on coming, before I knew it I was another stone (14lbs) on top of the rest I had already gained so I tried diets - nothing worked but the weight stayed steady. We decided we were going to try for a baby and at 19 I was (mis)diagnosed with Polycystic Ovarian Syndrome and told I'd never have children without medical help. We decided to wait but it meant we could stop all forms of contraception. I had my first major abscess which required hospitalisation to drain it at 21, a couple of months after I got married. It took over 6 months of daily packing before it finally healed. I then had lots of different kidney/urine infections which got me referred to kidney specialists who said there was nothing wrong - so I was peeing blood for no reason? So I was dismissed. Every 2-3 years I would another horrific abscess which was the same routine, hospitalisation followed by months of getting it packed before it would finally heal. Noone could explain any of this to me or why it was happening to me. (Now I know that steroids can CAUSE abscesses - it never even entered their heads.)

At 26 I was suffering from deep depression, the kind where you feel you're standing still and the whole world is moving at 100miles an hour around you and you're just on the outside, looking in. I was put on Venlafaxine (Effexor) and it was marvellous - I felt good about being me again and got the motivation to try and shift the weight, which by now had gone up to 14 and a half stone (196lbs). I exercised like a maniac, 10 hours a week of heavy-inpact aerobics and a very strict diet of aorund 1100 calories a day - it toook almost a year to lose just 2 stone (28lbs)- but the benefits of being fitter were great. A "normal" person would have lost a lot more weight than that with what I was doing. By now I found I couldn't sleep well at night, but could sleep VERY well during the day.

At 27, 8 years after being told I'd never have kids without intervention, my miracle happened - I was pregnant! There was something wrong from the beginning - in the first few weeks I looked about 5 months pregnant and I knew there was something not right with me but noone would listen - it was my 1st pregnmancy, what did I know? By 17 weeks I was in agony - inch wide stretch marks appeared literally overnight, they were itchy and very painful and started to bleed - I was told it was normal!!! I don't think so! My face was swelling up, I was an emotional wreck and then my bp started to rise. All normal in pregnancy I was told. By 25 weeks I was inpatient, at risk of premature labour with their diagnosis of pre-eclampsia. I was told I was going to have a very premature, very sick baby which I'd be lucky to see survive and was asked to look around the special care unit to prepare myself. I KNEW they were wrong but I had to go along with what they were telling me. I had 100mg dexamethasone injections to help the baby's lung development, funny, after every injection (2, 12 hours apart) the baby would go berserk and I would weirdly start to feel a little better for a few days. I was in and out of hospital so many times I lost count as my BP was scaring the Dr's it was so high but I didn't have any of the other classic symptoms of pre-eclampsia. At 30 weeks they'd had enough and said I wasn't going back home until the baby was born, I was treat really badly as they knew I didn't agree with the diagnosis and again I was severely depressed and began to hate the one thing I had always wanted to happen.

They gave me more steroid injections on a Friday and a funny thing happened - the next day I peed something and I knew this was the turning point. It was over a weekend that I was yet again stuck in hospital so didn't get to see a dr until the Monday but they were shocked when they came to see me and I was smug....I had lost over 3 stone (42lbs) in fluid AND my bp had come down - not to normal but enough so they could halve the amount of BP meds I was taking...that was the first time I was told by a dr "You're not a normal woman - you're not doing what the textbooks say you should be doing, we should be raising your meds, not lowering them - in fact you should have had this baby a long time ago, maybe it's a kidney problem." Back to kidneys again! I got let out of hospital the next day and stayed out until I finally had my baby girl at 38 weeks. At this point I HATED the consultant for what they put me through - but at the same time I did believe they saved the baby by giving me the steroids.

I never lost the baby weight afterwards, and I slept even less than before. I started having trouble walking up and down stairs and would fall over for no reason. My knees and hips were hurting. By the time my daughter was one I didn't have the strength to carry her around. Then I fell pregnant again. This time I ended up on BP meds by the time I was 10 weeks gone but otherwise everything seemed fairly ok - after the first time anything was better. We moved house when I was 26 weeks and at 28 weeks I felt ill, but my phobia of hospitals from the previous pregnancy stopped me from going to see the midwife. I was sleeping 20 hours a day and was very ill. I decided on May bank holiday Sunday that I was going to buy some things for baby - something that had been taken away from me the first time around. I thought I needed the toilet  while I was out and told my husband, the next thing I Knew My waters had broken and my husband said "There's blood EVERYWHERE!" - we were in the middle of a shop. I was taken in and had an emergency ceasarian section, but had to have a massive blood transfusion as I'd lost so much blood...my baby girl only suirvived for half an hour while they tried to help her. I lost the plot after that and was put on Prozac within a week, within a further week I took myself off it as it made me want to throw myself off a bridge - it's a horrible drug. That was May 2004 and when I went back for follow-up I was told I should really get "sorted out" before trying for another baby - having another baby after that was the last thing on my mind - though I did want more.

Life was a rapid downhill descent after that. I hated everyone and everything, I hated myself for not having a normal body - either to look at or to function. The the sweating started, it's not normal sweat like when you've exercised really hard, it's starts at the back of your head and the top of your back, then the face lights up and you're dripping. You can't get clean, as soon as you've had a bath or shower you're sweating all over again. I was wearing vest tops with no coat in the middle of winter and STILL I'd be sweating over everyone, so bad that strangers would pass comment on the fat chick being sweaty. I became more reclusive and made exuses to not go out - I've always been a bit of a party animal so it was completely out of character. I'd verbally assault you if you just glanced at me in the wrong way - I got violent too. I kicked out my huisband for a few months who I'd been with since I was 15.The came the acne, I'd never had the best skin in the world but this was something else - it was my arms, shoulders and chest - I was covered! It was so itchy and sore that when it first arrived I thought I was getting chicken pox for the third time so went tt see the GP. I got referred to a dermatologist who gave me treatment for 6 months, the last time I saw him he was annoyed that nothing had made any difference and told me to "Go away and get your hormones sorted out!" and that was that with him.

My Best friend and my husband nagged me for months to go back to the Dr. They'd seen how bad I'd gotten. I could barely walk much distance, I was dizzy most of the time, the acne was horrific, I was pushing everyone away from me - even my precious little girl. One day I caught myself screaming at her to go away and leave me alone - she was 3 years old and that was when I decided enough was enough and went to see another one of my GP's at the same practice. I had a bp monitor at home and knew it was high and had been for a long time so I landed in her office and began my ramble - telling her most, not all, of my symptoms. I told her I knew I was obese but noone should have to do what I had to do to lose weight, I told her I wanted more kids but had been told to get my hormones sorted out first, I told her what the dermatologist had said, I told her about my bp and the sweating. She took my bp and was horrified - 170/117, once I told her about the sweating she immediately mentioned Cushings and booked me to get some blood as she couldn't find a vein. I went back for the results and I didn't get a seat -she told me I'd be going into hospital the next week for 3 days of tests as my results were all over the place, she looked worried.

The next week I told my consultant (Dr Andy James - Newcastle RVI) my story and symptoms and he mentioned that I might be cyclical and the tests began. Before I left on the third day they must have some resuklts back as I was told by the nurse who took my last lot of bloods "we'll be seeing you again - regularly." On Friday 13th October 2006 i had a phone call from my consultant telling me that results were showing I was pregnant - but I had been bleeding the week before so I assumed the worst, as did he. The baby wasn't planned but I was determined to try and see it through and had weekly hospital appointments - at every visit I was asked if I'd like to abort as I never really stopped bleeding but it was manageable so I kept refusing. At 15 weeks I was hospitalised with suspected miscarraige, they couldn't see the baby on scan as there was so much blood and I lost over a pint of blood in a few hours. The next day they came to give me the bad news, mobile scanner trolley in tow but they were stunned to find the heartbeat immediately and walked away - abortion papers in hand, shaking their heads. A midwife had looked through my computer records and told me they'd never had a pregnant woman with Cushings before - that's when I knew for certain that's what I had. I was discharged once the bleeding calmed down a bit more but finally lost him to a strep-b infection at 19 weeks.

Then the Cushings tests started in earnest - women supposedly can't get pregnant with Cushings and I was told they needed to find the source of the excess cortisol. I did almost every Cushings test you can think of, mostly blood and urine but it became very obvious that I had adrenal based Cushings syndrome as my ACTH was undetectable every time it was tested. I had a bone-density scan which showed better than average bone density which surprised them as my cortisol results were so high. I had a CT scan of my adrenals which was supposed to be with contrast but they struggled for 45 minutes to find a vein to give me the contrast injection but failed. There was blood all over the table, all over the floor but still no vein so they had to give up and give me it without contrast, while there was a queue of patients outside, waiting. The radiologist said it was normal and it was shelved.

In the meantime Dr James was getting input on my case from several Cushings specialists around the UK and they had a meeting about my case to bounce ideas around. I provided him with a picture timeline of my symptoms which he said was very useful for the discussion. He came back with ideas on giving me a variety of tests for research if I'd agree to them - I said I'd do anything if it meant someone else down the line might have an easier time being believed and diagnosed. So I started tests for abberent adrenal receptors and they knew exactly which ones ot test because of my medical history and what I had told them. That was another 6 months of tests before they finally agreed I would get to surgery. Professor Grossman from Barts, London reviewed my CT scan and told them I had a small adenoma on my left adrenal gland so to remove that one. I went into hospital to start Metyrapone treatment which was supposed ot stabilise my levels before surgery when Dr James came to see me and said they'd also looked at my scan using a new program which turned it into a 3D image and they saw what at first they thought was a "seperate entity", behind my left adrenal gland and then they realised that it was actually attached to the gland, which looked very large and very unhealthy - pretty good for the same scan read as normal 6 months earlier! I agreed to the one removal with the proviso that if it was hyperplastic that I'd get the other one removed asap afterwards. By this time I was gaining 1lb a week, in pain all the time, with so many things wrong with me I dn't know where to begin - I had also got up to 15 stone 11lbs (221lbs)which is extreme when you're only 5' 3 and a half!

So November 2007 I had my left adrenal gland removed. I remember waking in the recovery room in absolute agony, I was almost throwing myself off the table as the nurses panicked around saying I'd had all the painkillers I was allowed and I wasn't due any more steroids for another hour and a half - I was in tears and probably scaring the other people in recovery! After a discussion with a Dr they agreed to give me my steroids early and the relief was immediate - my body was screaming for it's favourite drug. It was even written on my notes - in capitals "AMAZING REACTION TO 100mg HYDROCORTISONE IV"...they hadn't seen anything like it before and didn't understand why, because we all know it's not a painkiller - but it worked! I was out of hospital after 2 nights and many interviews with medical students.

As well as a 5cm X 4cm adenoma hanging off the gland, it DID have hyperplasia but found I still had to argue my case to get the other one removed. Finally, on Christmas Eve 2007 I got the email from my endocrinologist that I'd been waiting fro - he was booking me in with the surgeon to have my right gland removed. February 2008 I was back in surgery, but didn;t wake up in recovery this time - this time I woke up in Intensive Care, I'd decided to stop breathign in recovery room when they took the breathing tube out so had to quickly reintubate me. As I woke I was aware of a pain and not beign able to breathe quite right but asked to sit up. My husband came in to see me, wires everywhere, tubes still down my throat and unable to talk. They decided I could have one of the tubes removed so I could at least talk, just as well because I started getting a horrific pain in my back on the right side and my breathing got worse, I managed to gasp at my husband that I thought my lung had collapsed which he relayed back to the nurses who looked at me like I was mad but ordered an emergency chest x-ray and gave me more pain relief. My right lung HAD collapsed, not only that - they had put a chest drain in but too far and had punctured my diaphragm which had caused my lung to collapse. Still, after all that I was back home after a 3 night stay! Both times the operations were done laporascopically - in amongst the stretch marks you don't really notice the scars.

I recovered well, my GP got me signed up to free sessions at the gym 3 months out, and I began to work on the muscle weakness. The best machine for that was the Power Plates machine - it was amazing the difference it made. I could go for walks again - I started being able to walk up and down stairs without my knees, hips and back screaming at me, but I couldn't (and still can't) use the elliptical machines - they put way too much stress on already damaged knees. We decided that as the cause of my pregnancy misery was gone that we'd try for another baby and I got pregnant and had a baby boy in October 2009 - his middle name is Andrew after my consultant, he wouldn't be here if he hadn't "fixed" me. It was the most normal pregnacy I've had and it proved to my obstetrician that I was right and she was wrong with my first pregnancy. She did eat her words and is thinking of doing a medical paper on my case - after this many years of knowing she was wrong that at least gives me satisfaction that next time if she ever comes across someone like me again, she may think outside the box.

I've now lost 6 stone, 2lbs (86lbs) - normal weight for my height -and I've grown half an inch too - though noone can explain that to me. I still have other issues - my memory will never be the same again, I still struggle getting my thoughts to come out in an orderly manner, I still forget words that used to roll of my tongue in general conversation, but better than I was. I still have pain and for the last year I've had a lot of stomach issues so going for an endoscopy next month -I don't know what normal feels like  - but I know this is better than I could have ever dreamed of before. My left adrenal gland has been shipped off to Atlanta, Georgia for research purposes and I know that my own consultant is writing a paper on my case in conjunction with Paul Stewart in Birmingham - my final diagnosis was LH/HCG induced Cushings syndrome of which there are only 4 or 5 documented cases worldwide, so my Dr has put me in the "Super-interesting" group of Cushings patients. Like others-I've been told I can have reduction surgery to tie up the loose ends so to speak, which I plan to ask him for the referral sometime this year. He has his "before" pictures - it's about time he had the "after" ones for his paper.

I know I've given you too much information in some portions here, and I also known I've skipped over a lot of the tests and frustrations I had along the way - but I feel my story needs to be told in a context or you don't understand how they came to the final, precise diagnosis I got. I hope I haven't bored you to tears!!!

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