So after my Wednesday of piss collection, I sheepishly handed in 3 litres of the good stuff to the PIU at Kings on Thurs. The cab journey there was possibly the most inwardly awkward experiences of my life. Damilola the Uber driver had no idea the sloshing sound he could hear every time he went round the corner was coming from a container full of piss I was hugging. He was trying to make conversation about my day, my studies etc but the entire time I was just thinking 'I'm carrying 24 hours worth of piss on my lap'.
Anyway so when I handed it in I asked for a rough estimate of when they next need me in so I can plan when I can go and pack up all my shit in Manchester (didn't use those exact terms). She just stared at my piss container on the desk in front of her and said it usually takes two weeks for 24 Urine-Free test results to come back and they'll only be able to know what the next step is once the results are in. So, I now have two weeks to wait! TWO WEEKS! I was having a lovely time in Manchester and I travelled back down to spend 24 hours pissing in a bottle and you don't need me again for another two weeks! I don't know why my consultant said she wants me to have surgery by Christmas... doesn't seem likely.
But that suits me just fine. I really dont want surgery before Christmas. I wanna be able to actually enjoy the celebrations. There are so many good things going on in December! I'll happily have it after though, knowing that I actually have the potential to be a normal person without all these ailments is making me restless and I'd to be normal as soon as possible please.
Anyway, so no developments, really, except for the realisation that surgery is most likely to be after Christmas rather than before (which I'm more than happy about).
Monday, 30 November 2015
Tuesday, 24 November 2015
Being Hit All At Once
I'm on the train back home from my Warehouse Weekend/Manchester holiday, and now that I'm on my own and I've only got the soulful sound of Adele's new album and my thoughts to listen to, the reality of leaving uni has hit me all at once and I am definitely feeling an emotional comedown.
Despite the high dose of Dexamethasone well and truly screwing my insides over (details of which are unnecessary), I had the best time being reunited with my home friends. And knowing I was taking an interruption from uni meant I was able to be completely carefree! It was so nice to not worry about work or budgets and actually enjoy the city and the time I had there... But now I miss them again *insert tears here*.
Then when home friends went home it struck me that I'm grasping on to time I have to spend with uni friends too... While I was there I selfishly but unregrettably discouraged any of them going into lectures and made them spend time with me instead. Heh. But there were so many times this week that we'd just be sitting watching something trashy on the tele (80% of the time) and I'd think 'you're not gonna have this little comforting home for much longer' which made me sad. I signed over the tenancy papers yesterday so tiny Coops can have my room (thank god, cause that rent is a bitch) and although it is all very exciting, I'm very jealous of them being together in our little house. I'm gonna miss decorating the Christmas tree, the annual ice skating trip, the christmas meal! I even feel sad about not being there at exam time when were stressed and under pressure and end up crying for no reason. Waaaaaaaaaaaaa
Before I was feeling all very (too) optimistic about taking a break from uni. It was just something that I had to do for practical reasons, it wasnt the end of the world... But now I'm on my fourth run of Adele's album and IT FEELS LIKE THE END OF THE WORLD.
I know I'll be going back up in a couple of weeks but knowing that that'll be the final trip and my journey back will mark the end of my year (already) and moving back to london hurts my heart. I really was starting to love uni. In the words of Hannah Powell- 'fucks sake...! Life...!'
Friday, 20 November 2015
Overnight Dexamethasone Suppression Test - Day 2
So, as expected, testing was extremely uneventful yet again. Same thing happened, turned up, got my blood taken (but by a lady called Lay this time, just to add a little excitement into the mix)
I did experience a little side effect of the Dexamethasone last night though. I don't know much about the drug but reading the leaflet they gave me it seemed like its serious risks were that it could turn you loopy. Either with depression and suicidal thoughts, manic highs, or hallucinations and 'disturbing thoughts'. I never reached any of those levels but after taking 1mg before I went to bed I experienced some funky dreams. I can't remember the ones about the foam finger or the new lip balm i just bought in detail but I do remember the one about my teeth. I had one where I was sitting on the sofa with my mum complaining that they were aching. So i was prodding them... they were rubbery like brown rice, and I could slightly bend them. Next thing I know they were popping out! So I leaned over the table and scooped them all out my mouth. Heard that dreaming about loosing teeth was a sign of losing control of your life. I hope I dreamt that because of the Dexamethasone and not because I am, in fact, losing control of my life. I have not got the energy for more shit to be thrown my way.
Next I have to take eight times the amount I did last night... I dread to think what kind of messed up shit my brain is gonna muster up this time.
Overnight Dexamethasone Suppression Test Day 3
Unfortunately and expectedly, another boring post. No messed up dreams last night (that I can remember anyway). All thats happened is that I went in and had two more vials of fresh blood taken. Can't remember what the name of the lady was called today but I liked her the most, she was the nicest. Told me i had a nice juicy vien. Which kinda compensated for the fact the injection hurt the most (not her fault, kinda expected when theyve prodded at the same spot 3 times in a row).
I keep having spots of doubt about whether or not I even have this disease, and keep getting paranoid that I've jumped the gun and made a big embarrassing hoo haa out of nothing because before they find the cause, no official diagnosis can be made... but last night, despite feeling lathargic and knowing I had a long day ahead of me today, the insomnia, caused by elevated cortisol levels struck again. If there's one thing underpinning this illness it's bloody inconvenience. In a normal person Dexamethasone would have an effect on cortisol levels, with 8mg of it and still getting an unwanted buzzing brain at night despite feeling drained, I'm pretty sure I've got a little friend growing on my Pituitary.
But lets not think about that bastard for a little while now. Despite having about 60% of the sleep I actually need, I'm on my way up to Manchester ready to let loose and spend time with my friends. Back on Tuesday night, ready to collect my piss on Wednesday and hand it in on Thurs. Brace yourself PIU, youre in for a treat!
Thursday, 19 November 2015
Overnight Dexamethasone Suppression Test - Day 1
I'll be writing day by day updates about this test but, based on today, I reckon the whole sagas gonna be a little anticlimactic, really. Today I went in at 10 to 9 in the morning, a little exicted to be taking my first steps to recovery but the appointment was boring. Unexciting and dry.... No funny stories, no Charlotte Cakebreads... Not even the smallest of anicdotes like a nurse with funky breath. I was just welcomed by a lady called Kemi who was given a sheet which told her to take my blood... So she did.
Then another man came in and asked me if I'd take part in a clinical trial. He explained it all to me and I agreed. It was to see if testing saliva was accurate enough for testing cortisol levels so in future they wont require to do so many blood tests and the whole experience can be made a lot easier and enjoyable (yeah, id rather not have to take 3 hours out my day for a 30 second procedure for 3 days in a row). All i had to do was suck on a little foam finger for a minute. I wasnt allowed to touch it though, so pointing it out my mouth and having to aim for it to go back into the tube while he was watching me was kinda embarrassing. He gave me 2 other vials with 2 more foam fingers to take home and have a good old chew on, one before I take the 1mg of Dexamethasone tonight and one in the morning before I brush my teeth.
So yeah, testing has been pretty boring and uneventful so far. Next test after this one is the 24 Urine-Free Cortisol Test next week. They gave me a FIVE LITRE bottle to fill up. I can't WAIT to make the journey to hand that one in.
Monday, 16 November 2015
November 16th: First Tests Booked!
I finally got the call scheduling my tests for this week (I know it's only been three days but I'm impatient). It was from PIU (Planned Investigations Unit) at King's and she began by saying I needed to come in for 3 days. Ru-oh. First thing I think is that if they need me for 3 days it's because the tests are gonna be intense and unpleasant and uncomfortable and bleugh. But the moons are re-aligning and my mind is put at ease when she says that it's only a Dexamethasone Suppression test (I'd tried to do some research on the testing process and I'd come across this one before). The only reason they need me for 3 days is because they need to take my blood for 3 consecutive days, not because i have to undergo any unpleasant procedures.
I'll need to go in on Wednesday morning, Thursday morning and Friday morning. Which means that I won't have to miss any of the Warehouse Weekend!!!! Win! I know I've become a bit obsessive about it but it'll probably be my last chance for a huge blowout for a long time. And it's a rarity that the little group we've got going are actually together. The moons are finally aligning again!
Compiling what I've read and what I've been told this is what I've got to expect this week:
Wednesday- blood test, given 1mg of Dexamethasone between 11pm and midnight
Thursday- blood test in the morning, given 8mg of Dexamethasone between 11pm and midnight
Friday- blood test in the morning
I'll need to go in on Wednesday morning, Thursday morning and Friday morning. Which means that I won't have to miss any of the Warehouse Weekend!!!! Win! I know I've become a bit obsessive about it but it'll probably be my last chance for a huge blowout for a long time. And it's a rarity that the little group we've got going are actually together. The moons are finally aligning again!
Compiling what I've read and what I've been told this is what I've got to expect this week:
Wednesday- blood test, given 1mg of Dexamethasone between 11pm and midnight
Thursday- blood test in the morning, given 8mg of Dexamethasone between 11pm and midnight
Friday- blood test in the morning
And friday afternoon- start the weekend!! *BBM dancing face*
The purpose of the Dexamethasone Suppression Test is to further investigate the extent of my Cushing's Syndrome. In a normal patient, small doses of Dexamethasone will reduce their levels of cortisol, in a patient with Cushing's syndrome, it won't.
Then, next week, I have to conduct a 24 hour Urine-free Cortisol test. I'll have to collect my pee in a bottle for 24 hours, keep it in the fridge and hand in the next day. Waaaaahey! Time to order myself a funnel. At the time of the phonecall, I was in a stuffy Sports Direct in central London standing directly opposite a useless till worker so trying discuss the logistics of collection and transportation of my pee discretely was very awkward indeed. Lucky they've started playing the tacky christmas music at about ten thousand decibels already though, otherwise the whole of central london may have had to hear me discuss my piss with a stranger over the phone.
I'm glad the tests this week are non-invasive and just to get a better picture of my syndrome, the one's investigating for the disease and looking for the tumour don't sound as nice. But I'm not gonna jump the gun or even think about them yet...
**Since writing this, I've learnt more about the Dexamethasone Suppression Test and on top of indicating the extent of my hypercortisolism, it can also indicate the cause of my hypercortisolism. Although low doses of Dexamethasone do not affect people with Cushing's syndrome, the high dose can indicate where the tumour will be:
-There will be no effect on cortisol levels if the cause is Adrenal or Ectopic Cushing's Syndrome (tumours in the adrenal or lungs)
-There will be normal suppression of cortisol levels if cause Cushing's Disease (a tumour in the pituitary gland)
The purpose of the Dexamethasone Suppression Test is to further investigate the extent of my Cushing's Syndrome. In a normal patient, small doses of Dexamethasone will reduce their levels of cortisol, in a patient with Cushing's syndrome, it won't.
Then, next week, I have to conduct a 24 hour Urine-free Cortisol test. I'll have to collect my pee in a bottle for 24 hours, keep it in the fridge and hand in the next day. Waaaaahey! Time to order myself a funnel. At the time of the phonecall, I was in a stuffy Sports Direct in central London standing directly opposite a useless till worker so trying discuss the logistics of collection and transportation of my pee discretely was very awkward indeed. Lucky they've started playing the tacky christmas music at about ten thousand decibels already though, otherwise the whole of central london may have had to hear me discuss my piss with a stranger over the phone.
I'm glad the tests this week are non-invasive and just to get a better picture of my syndrome, the one's investigating for the disease and looking for the tumour don't sound as nice. But I'm not gonna jump the gun or even think about them yet...
**Since writing this, I've learnt more about the Dexamethasone Suppression Test and on top of indicating the extent of my hypercortisolism, it can also indicate the cause of my hypercortisolism. Although low doses of Dexamethasone do not affect people with Cushing's syndrome, the high dose can indicate where the tumour will be:
-There will be no effect on cortisol levels if the cause is Adrenal or Ectopic Cushing's Syndrome (tumours in the adrenal or lungs)
-There will be normal suppression of cortisol levels if cause Cushing's Disease (a tumour in the pituitary gland)
Sunday, 15 November 2015
THE MOONS!!!
I briefly mentioned visiting my poorly pops (Grandma) in my last post but didn't expand on it because it's an entirely different issue and has nothing to do with Cushing's.
BUT HOW WEIRD IS THIS, RIGHT?
My Pops is 81, still works, does tai chi, climbs 3 flights of stairs up to her bedroom etc., a usually very active woman. But a couple of weeks ago she suddenly turned. She's been weak, nauseas, confused, not eating, in pain, dizzy, vomiting, dairrhea etc. but all the doctors and nurses detected and knew was that her sodium levels were low...
Trying to find the cause, it turns out she's got Addison's Disease. A cortisol deficiency. The opposite of Cushing's. What the hell are the chances?!?! Same week, same family, same hormone. One has excess and one is deficient. And there's nothing on the internet to say they're hereditary. There is something going on with the moons, I'm telling you.
It can be treated by taking cortisol supplements, of which they've started administering and she is already in much better health, by the way. My tai chi pop's will be out and back to being a badass in no time.
BUT HOW WEIRD IS THIS, RIGHT?
My Pops is 81, still works, does tai chi, climbs 3 flights of stairs up to her bedroom etc., a usually very active woman. But a couple of weeks ago she suddenly turned. She's been weak, nauseas, confused, not eating, in pain, dizzy, vomiting, dairrhea etc. but all the doctors and nurses detected and knew was that her sodium levels were low...
Trying to find the cause, it turns out she's got Addison's Disease. A cortisol deficiency. The opposite of Cushing's. What the hell are the chances?!?! Same week, same family, same hormone. One has excess and one is deficient. And there's nothing on the internet to say they're hereditary. There is something going on with the moons, I'm telling you.
It can be treated by taking cortisol supplements, of which they've started administering and she is already in much better health, by the way. My tai chi pop's will be out and back to being a badass in no time.
Saturday, 14 November 2015
Tweet Tweet
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| #soz |
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| ...given to me by the physiotherapist for my weak joints |
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| used to think it was the darkness of winter that made me sad |
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| the constant feeling of being drained has mentally aged me! |
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| my cognitive abilities don't come easily |
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| and in 2016 I won't have my body fighting against me! #achieveajawline2k16 |
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| the blurry days and weak muscles/ ankles dont work in my favour and I'm often on the floor |
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| I thought my inability to build up any fitness level it was me not working hard enough |
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| disturbed sleeps and needing to pee is a BAIN |
Friday 13th... A Big Day!
It's been a bit of a hectic few days so I'm gonna lay in bed, kick back and try and comprehend all of it (although I do need to stop myself from using Cushing's as an excuse to be lazy otherwise I'll only be able to document my journey in words because I won't fit in a camera screen anymore, and I'm yet to master the art of panoramic).
Journeyed home on Thursday evening (train was overcrowded, delayed, plug sockets didn't work and poor little Jackie was the only other member of staff aside from the driver), went to see my poorly pops and then came home and fell asleep.
The next day was appointment day... Nervous but excited... After this appointment I'll have a clearer picture of what I need to do, how I'm going to do it, what I have to expect really. It also said on the referral letter that I should allow two hours in case they need to do any tests there and then (maybe an MRI that would locate the tumour and then I'd be set to have it zapped out next week? naaaah... maybe a little too optimistic Hannah.).
So off we trot (but not really trot, cause King's College Hospital is a bitch to get to via public transport and its raining so we order an Uber, obviously) and arrive and sign in. The waiting room wasn't too bad actually, there weren't loads of stinky people coughing in your face, it wasn't ridiculously stuffy and there were swanky big screens that made announcements telling people where to go and who to see etc. There was a large woman called Charlotte Cakebread waiting with us... What a name! heh
I got called 20 in minutes late but meh, whatever, not really something to complain about when you're saving my life. The appointment started by basically profiling me, I got asked about symptoms and changes and what made me realise that something was wrong. But Cushing's is a disease is often described as 'constantly feeling cruddy' (maybe thats why I enjoy sleep so much), so I've only noticed all these changes and symptoms in hindsight. Its always just been normal to me. I've never had any pivotal moments when I've suddenly fallen sick to spark any concern. The exposure to cortisol debilitates you slowly so you don't really notice it happening.
I guess I could pinpoint where certain changes happened by looking back and making comparisons though, so we discussed the different symptoms and gave rough estimates of how long I'd been suffering from them. Pubey hair- 2 years, lack of energy- 6 years, intolerance to alcohol- 2 years (although the asian flush gene I was born with and shall be with me until I die. Fantastic.), excessive marks- 4 years. When it got to the emotional and mental symptoms it was a little harder though and yes, a few tears were shed (I'm only human). I do miss the old me.
Anyway, so good old Dr. Jackie said she probably had enough written up (I could have gone on forever, it literally affects every single thing about you that the symptoms are endless!) and she wanted to move on to talk about treatment.
I was still in a bit of an emotional stir up so the next bit was a bit of a blur... so I can't really remember exactly what she said. But to sum up all of what I can remember, she said Cushing's is treated as urgent, wants testing and investigations to start next week and ideally have the final treatment of surgery by Christmas.
SAY WHAT. Okay, I'll be completely honest and tell you that the first thing that crossed my mind (and came out of my mouth because I seem to have no filter) was Warehouse Project. I want to be in Manchester next week and spend time with my besties :'(, not in London having tests done. Second thing that crossed my mind was the fact I said my sister and her friends could stay at my house in Manchester for another Warehouse Project they're going to in December and chances are, if surgery is before Christmas I won't be there for them to be able to.
But then, I had to be realistic and actually get my priorities straight... (but I'm gonna be optimistic in the hope that the testing will be on Monday, Tuesday, Wednesday or latest Thursday and I'll still manage to have my weekend of shits and giggles in the north). I am actually grateful that they are pushing to get me better and so thankful that they're not wasting my time and the process isn't going to be dragged out.
So that was that, no train back up to Manc on Sunday anymore (typical, the one time I don't overpack I have to stay for longer). The ball is officially rolling as of next week. I don't want it to be a sensitive or awkward subject (can't' be arsed for any of that stress), so I came back home and posted the news and blog online (I didn't want to post it any sooner incase at the appointment they ran further tests and found out I was actually just making excuses for being a fatty and I was just a little bit odd). Thank you for all your support so far, sorry I haven't managed to talk to people personally, its been a bit of a whirlwind!
What does it mean for uni? It means I'm probably most definitely going to have to take a break. Frustrating because, besides academically starting second year and having already done loads of work for it, compared to last year I was actually really enjoying living there. My friendships have got so much stronger and there is so much going on that I want to do (got another email saying I'd reached the top of the list to be in the audience for Jeremy Kyle, can't do that now can I?! Gutted.). It took me so long to finally feel settled and comfortable so its annoying and I don't really want to burst my little Manchester bubble but I will be back and I can always pick up where I left off.
But looking on the plus side, there's a lot of good things about taking a break:
So now the next thing to wait for is my next appointment for testing and investigations date (keep your fingers crossed that its not at the weekend!)
I'm also doing a lot of googling surrounding the disease and seems like it's a big thing in the world of dogs and horses. Brilliant! Not only do I have a disease that's called 'Cushing's' (just to rub the fat aspect in a bit more), but when people talk of it its usually regarding their pet animal!
Journeyed home on Thursday evening (train was overcrowded, delayed, plug sockets didn't work and poor little Jackie was the only other member of staff aside from the driver), went to see my poorly pops and then came home and fell asleep.
The next day was appointment day... Nervous but excited... After this appointment I'll have a clearer picture of what I need to do, how I'm going to do it, what I have to expect really. It also said on the referral letter that I should allow two hours in case they need to do any tests there and then (maybe an MRI that would locate the tumour and then I'd be set to have it zapped out next week? naaaah... maybe a little too optimistic Hannah.).
So off we trot (but not really trot, cause King's College Hospital is a bitch to get to via public transport and its raining so we order an Uber, obviously) and arrive and sign in. The waiting room wasn't too bad actually, there weren't loads of stinky people coughing in your face, it wasn't ridiculously stuffy and there were swanky big screens that made announcements telling people where to go and who to see etc. There was a large woman called Charlotte Cakebread waiting with us... What a name! heh
I got called 20 in minutes late but meh, whatever, not really something to complain about when you're saving my life. The appointment started by basically profiling me, I got asked about symptoms and changes and what made me realise that something was wrong. But Cushing's is a disease is often described as 'constantly feeling cruddy' (maybe thats why I enjoy sleep so much), so I've only noticed all these changes and symptoms in hindsight. Its always just been normal to me. I've never had any pivotal moments when I've suddenly fallen sick to spark any concern. The exposure to cortisol debilitates you slowly so you don't really notice it happening.
I guess I could pinpoint where certain changes happened by looking back and making comparisons though, so we discussed the different symptoms and gave rough estimates of how long I'd been suffering from them. Pubey hair- 2 years, lack of energy- 6 years, intolerance to alcohol- 2 years (although the asian flush gene I was born with and shall be with me until I die. Fantastic.), excessive marks- 4 years. When it got to the emotional and mental symptoms it was a little harder though and yes, a few tears were shed (I'm only human). I do miss the old me.
Anyway, so good old Dr. Jackie said she probably had enough written up (I could have gone on forever, it literally affects every single thing about you that the symptoms are endless!) and she wanted to move on to talk about treatment.
I was still in a bit of an emotional stir up so the next bit was a bit of a blur... so I can't really remember exactly what she said. But to sum up all of what I can remember, she said Cushing's is treated as urgent, wants testing and investigations to start next week and ideally have the final treatment of surgery by Christmas.
SAY WHAT. Okay, I'll be completely honest and tell you that the first thing that crossed my mind (and came out of my mouth because I seem to have no filter) was Warehouse Project. I want to be in Manchester next week and spend time with my besties :'(, not in London having tests done. Second thing that crossed my mind was the fact I said my sister and her friends could stay at my house in Manchester for another Warehouse Project they're going to in December and chances are, if surgery is before Christmas I won't be there for them to be able to.
But then, I had to be realistic and actually get my priorities straight... (but I'm gonna be optimistic in the hope that the testing will be on Monday, Tuesday, Wednesday or latest Thursday and I'll still manage to have my weekend of shits and giggles in the north). I am actually grateful that they are pushing to get me better and so thankful that they're not wasting my time and the process isn't going to be dragged out.
So that was that, no train back up to Manc on Sunday anymore (typical, the one time I don't overpack I have to stay for longer). The ball is officially rolling as of next week. I don't want it to be a sensitive or awkward subject (can't' be arsed for any of that stress), so I came back home and posted the news and blog online (I didn't want to post it any sooner incase at the appointment they ran further tests and found out I was actually just making excuses for being a fatty and I was just a little bit odd). Thank you for all your support so far, sorry I haven't managed to talk to people personally, its been a bit of a whirlwind!
What does it mean for uni? It means I'm probably most definitely going to have to take a break. Frustrating because, besides academically starting second year and having already done loads of work for it, compared to last year I was actually really enjoying living there. My friendships have got so much stronger and there is so much going on that I want to do (got another email saying I'd reached the top of the list to be in the audience for Jeremy Kyle, can't do that now can I?! Gutted.). It took me so long to finally feel settled and comfortable so its annoying and I don't really want to burst my little Manchester bubble but I will be back and I can always pick up where I left off.
But looking on the plus side, there's a lot of good things about taking a break:
- I don't have to start two bitches of essays that I am clueless about. When it was put into my mind that I might have to start again next year I quickly became very complacent with how much work I did... if I wasn't going to complete the unit why bother staying up to do dryyyyyy readings? heh, worked in my favour.
- I'm a celeb starts this Sunday
- I'll be home to decorate the Christmas tree
- I can still visit everyone else at uni
- The recovery process is different for everyone and if I have the surgery soon it gives me plenty of time if I need it
- Maybe I'll have time to get a temp job and save some money for surviving back at uni
- My next door neighbour is having a baby and I can spend lots of time with it while its still cute. I love babies!!!
- and ill have time to spruce up the blog aesthetics, maybe change the picture to something that wasn't my first ever instagram selfie edit 4 years ago
So now the next thing to wait for is my next appointment for testing and investigations date (keep your fingers crossed that its not at the weekend!)
I'm also doing a lot of googling surrounding the disease and seems like it's a big thing in the world of dogs and horses. Brilliant! Not only do I have a disease that's called 'Cushing's' (just to rub the fat aspect in a bit more), but when people talk of it its usually regarding their pet animal!
Tuesday, 10 November 2015
November 10th- The Ball is Rolling!
I slept in again (but its my day off so I didn't feel too guilty). But when I woke up I woke up to 3 missed calls from an unknown number. I kicked myself. I just knew the calls were from the doctors. I'm so eager to get the whole process started or at least know what the process is going to be but i freaking missed my chance and now I have to wait for them to call again!
Doesn't take long for an incoming call from an unknown number to pop up on my phone...Kings College Hospital arranging an appointment for Friday morning with the endocrinologist. Yay! So soon! I'm a sucker for efficiency.
So the first thing to do is call the mother who is just as keen about finding out about everything as me to inform her (and get her card details to pay for my train home, obviously). Train home on Thursday booked. Then a couple hours later I receive a photo message from her - 'looks like they've referred you to St. George's too!'. It was a photo of a letter I had been sent confirming an appointment at a different hospital (I told her to open my post while I'm not at home). I'm confused. And it's scheduled for next Thursday- a time yes, I guess I can do. But would reeaaally rather not... its Warehouse Project (in Manchester) the next day! And my best friends are coming up to stay that weekend. Gimme a breaaaak, don't ruin my plans, I've been looking forward to this for so long! (But yes yes I am aware, my health should probably come first).
So in my confusion I call my doctors to find out what's going on and whether or not I have to attend both appointments. He seems confused too. He says he's not sure why I've been asked to go to St. George's and I should definitely be assigned to Kings College as he's been liaising and corresponding with their endocrinology team. (Wahey! They've been doing some behind the scenes organising and planning without me even pushing them to). Suits me just fine! I'd much rather have an appointment this week than next. A little win for Gin-Sing.
I'm even more eager for time to go by now so I'm finally clued up about what's going to happen. But it's looking promising seeing as I was told they weren't even due to have a meeting to discuss anything until Thursday. The letter St. George's sent me was also dated on the 6th and my tests were only taken on the 3rd so hopefully I'm with a team that's got their shit together.
I also didn't feel the terrible headaches, dizziness and tiredness I've been feeling from taking my blood pressure tablets (Amlodipine) today... Today was a good day :)
Doesn't take long for an incoming call from an unknown number to pop up on my phone...Kings College Hospital arranging an appointment for Friday morning with the endocrinologist. Yay! So soon! I'm a sucker for efficiency.
So the first thing to do is call the mother who is just as keen about finding out about everything as me to inform her (and get her card details to pay for my train home, obviously). Train home on Thursday booked. Then a couple hours later I receive a photo message from her - 'looks like they've referred you to St. George's too!'. It was a photo of a letter I had been sent confirming an appointment at a different hospital (I told her to open my post while I'm not at home). I'm confused. And it's scheduled for next Thursday- a time yes, I guess I can do. But would reeaaally rather not... its Warehouse Project (in Manchester) the next day! And my best friends are coming up to stay that weekend. Gimme a breaaaak, don't ruin my plans, I've been looking forward to this for so long! (But yes yes I am aware, my health should probably come first).
So in my confusion I call my doctors to find out what's going on and whether or not I have to attend both appointments. He seems confused too. He says he's not sure why I've been asked to go to St. George's and I should definitely be assigned to Kings College as he's been liaising and corresponding with their endocrinology team. (Wahey! They've been doing some behind the scenes organising and planning without me even pushing them to). Suits me just fine! I'd much rather have an appointment this week than next. A little win for Gin-Sing.
I'm even more eager for time to go by now so I'm finally clued up about what's going to happen. But it's looking promising seeing as I was told they weren't even due to have a meeting to discuss anything until Thursday. The letter St. George's sent me was also dated on the 6th and my tests were only taken on the 3rd so hopefully I'm with a team that's got their shit together.
I also didn't feel the terrible headaches, dizziness and tiredness I've been feeling from taking my blood pressure tablets (Amlodipine) today... Today was a good day :)
Monday, 9 November 2015
What is Cushing's?
Now I'm no medical expert but I'm going to attempt to explain in a black and white simple way so that non-medics are able to understand... here's what I've gathered:
Hypercortisolism, also known as Cushing's Syndrome is when your body has too much cortisol. Cortisol is a hormone that affects basically every part of your body and is responsible for handling stress. Being exposed to too much cortisol is what causes you to develop and suffer from all the annoying and inconvenient symptoms.
Hypercortisolism is a result of either (in order of how common they are):
...I think that explains it... I'll put my explanation to the ultimate test by reading it to my Dad and see if he understands.
Hypercortisolism, also known as Cushing's Syndrome is when your body has too much cortisol. Cortisol is a hormone that affects basically every part of your body and is responsible for handling stress. Being exposed to too much cortisol is what causes you to develop and suffer from all the annoying and inconvenient symptoms.
Hypercortisolism is a result of either (in order of how common they are):
- Long-term use of corticosteroids- a non-natural, induced cause
- Cushing's Disease- a benign (non-cancerous) tumour in your pituitary gland (located just below the brain) causing it to produce too much ACTH (adrenocorticotropin). ACTH is the hormone that in turn instructs your adrenal glands on how much cortisol to produce. (excessive ACTH = excessive cortisol)
- Adrenal Cushing's Syndrome- a benign tumour in your adrenal gland(s) causing them to produce too much cortisol
- Ectopic Cushing's Syndrome- a tumour (likely to be malignant) somewhere else that is excreting too much ACTH.
- most common amongst 20-50 year olds
- about 5 times more common in women than men
- only about 1 in every 500,000 people suffer from it (about 5 people diagnosed a year in the UK)
- often goes undetected for years (or entirely)
- the symptoms can vary from person to person
...I think that explains it... I'll put my explanation to the ultimate test by reading it to my Dad and see if he understands.
It All Makes Sense Now... (My Symptoms)
So yet again I'm the only one still up and my mind is suddenly buzzing with energy. I used to think this was just because I'd been too lazy in the day that I hadn't used up all my energy from my sleep the night before, but now I know it's a common symptom and actually my hormones having a nice little mess around with me. So I thought instead of doing any productive uni work that actually requires concentration and thinking, I'd channel my time and effort into another post.
Last year I moved to Manchester for university and found myself in a nice little flat of 3 girls. It was meant to be a flat of 4 boys and 4 girls but alas, the luck of Hannah strikes again and I was placed in the one flat in the corner of the block that only has one floor... above the warden (you'll soon get to know that if there's ever a chance to go down a path of normality, fate decides I don't have the option). Anyway, in the end it didn't turn out bad, I was placed with two other lovely girls and we got to know each other and grew quite close.
I'm still living with one of the girls and I just finished a conversation with her about my diagnosis and how things have all pieced together. Whilst living with me, throughout the whole of first year, she was exposed to all my ailments and little strange things about me and used to mock me because I never seemed to stop adding to the list (but this is coming from a girl who has never tried a noodle before, so the banter swung both ways). Now we realise that I'm not in fact weird (but I guess I kind of am), I'm just a victim of Cushing's Disease. We stayed up and thought about all the things we just used to laugh about in first year but were actually a result of my hormone imbalance:
Last year I moved to Manchester for university and found myself in a nice little flat of 3 girls. It was meant to be a flat of 4 boys and 4 girls but alas, the luck of Hannah strikes again and I was placed in the one flat in the corner of the block that only has one floor... above the warden (you'll soon get to know that if there's ever a chance to go down a path of normality, fate decides I don't have the option). Anyway, in the end it didn't turn out bad, I was placed with two other lovely girls and we got to know each other and grew quite close.
I'm still living with one of the girls and I just finished a conversation with her about my diagnosis and how things have all pieced together. Whilst living with me, throughout the whole of first year, she was exposed to all my ailments and little strange things about me and used to mock me because I never seemed to stop adding to the list (but this is coming from a girl who has never tried a noodle before, so the banter swung both ways). Now we realise that I'm not in fact weird (but I guess I kind of am), I'm just a victim of Cushing's Disease. We stayed up and thought about all the things we just used to laugh about in first year but were actually a result of my hormone imbalance:
- my skin getting worse and worse (when I came back from a weekend trip home and showed her acne cream I had to keep in the fridge we laughed about it just being another thing that I have wrong with me)
- my hair being EVERYWHERE. Falling out all over the shop (she once found one of my hairs in her baked beans and I wasn't even there. Drives her mad).
- my mood swings. I've always known I don't cope well with stressful situations so don't tend to put myself in them, so I don't really have a psycho reputation but I tend to have a really fired up moment and then suddenly switch off and numb myself to any kind of involvement and visa versa.
- staying up until about 5am doing nothing that can't be done during the next day (like now).
- sweating within about 4 or 5 seconds of change (I'm sure it grossed her out when I used to wipe sweat out my cleavage but she and I just had to suck it up and get on with it).
- my back and hip aches and pains (although this does overlap with Elhers-Danlos so I always told her that wasn't me being weird and it was actually a medical condition and she wasnt allowed to mock me)
- not being able to string a sentence together. Everyone else can bang out an essay overnight but it takes me about 15 minutes to be able to construct a sentence that actually reads what I mean for it to say.
- My constant and odd bruising- also put this down to Elhers-Danlos
- My hair feeling like a cross between a pube and an electrical wire (just thought hormones had changed and I'd been given the short straw again)
- Me being super heat sensitive and not being able to have hot showers
- My AWFUL hangovers/ migraines/ feeling like I'm on deaths door after one pint of less than 4%.
- My impaired peripheral vision and my 'blurry days' that caused me to trip up even if I was wearing my glasses (I also suffer from very sensitive eyes (to both physical things like water, chlorine, make up etc. and light exposure) but I'm not sure whether this has any relation to Cushing's)
- My forgetfulness
- My sudden urges of thirst (I only ever drank out of my bigger-than-pint sized tankard and always downed it in one)
- My sudden urges to pee
- Waking up at least three times a night to use the toilet
- My lack of sex drive (but being amidst the Manchester Freshers scene I wouldn't want a sex drive anyway)
And it probably explains my massive weight gain, buffalo hump, excessive marks (and stretch marks) all over my skin, hairy sideburns, lack of enthusiasm and energy and inability to endure any vigorous exercise to her but she's too polite to have bantered about them.
Saturday, 7 November 2015
The Story So Far
A little background info about me :
anndddd I think thats all the relevant information you need to know about me to understand the upcoming life posts.
SO. I'll start explaining what has happened so far at the beginning... it's quite long winded and involves a lot of non Cushing related tests but its funny how it all pans out.
I've applied to do Camp America next year (always loved working with kids, never had the chance to travel the US, right up my street, really), and to finish off my application all I need is to make a cringeworthy video and for my medical form to be signed by a physician. The doctors are pretty useless in Manchester because they have so many students to cater for that they don't really seem like they tend to care and are more interested in ticking you off the list so they can move on to the next hungover student. So I've stayed registered to my doctors surgery in London (who are always very helpful and I always feel comfortable with). Anyway, so off I trotted to get my medical form filled out and while I was there I thought I may as well get a once over to make sure everything was A OK. Long story short, there wasn't enough time to do all the examinations on the medical form to get it completed and I'd have to make another appointment and go back. Managed to get my blood taken though.
Back up in Manchester now and I receive a voicemail (was being a typical student and sleeping when he called) from my doctor asking me to come in and repeat the blood test because my potassium levels came back abnormally high and he wanted to check I wasn't having any palpitations. In my mind, for some reason I decided to take this as my sodium levels coming back high. Anyway, not too bothered, sodium = salt... I know I like my food salty, he'll probably just tell me to stop eating so many crisps. Back down in London in a few weeks, I'll get told off and do it then. (This was a very misinformed judgement by the way, eating crisps isn't what affects your sodium levels. I have a tendency to make 4 by putting 2 and 3 together.)
The message played on my mind a bit because after he mentioned palpitations I was suddenly aware that yes, I do get palpitations, I just tend to ignore them. So when I got back to London I booked an appointment to get my blood retaken and turned to my ever knowing mother for some health advice. Why do I get palpitations and what do high sodium levels mean? Her being a nurse is always reassuring because she seems to know everything about everything and can almost always answer your health questions. Anyway, so I told her about the test and the results coming back abnormal, but like I said, for some reason, I remembered the doctor saying sodium and not potassium. We Googled what high sodium meant (i know you shouldnt google but i just couldnt help myself) and then we came across our friend, 'Cushing's Syndrome'. When we looked at the symptoms it was kind of overwhelming at how many I fell victim to (I'll write another post about them) and we said yep, right there and then, I have Cushing's, I'll ask to be tested for that tomorrow. Then I went to bed.
The next day before I went to the appointment about my blood tests I wrote a list of all the indications I had of Cushing's to take to hear what he had to say. I turn up at the appointment and he quickly corrects me that it was my potassium levels that were too high and my sodium levels and everything else in between came back completely normal. He reassured me that the chances were I was either dehydrated or the results were spoilt because potassium is an electrolyte and the cells can become easily ruptured in transit, but he wanted to check my blood pressure anyway... High. Way too high for my age.
So alas, another problem! He told me he wanted me to monitor it over the next week or so and if I do have high blood pressure we'll need to arrange to sort that out. Now that discussion was done, I dropped in the mention of Cushing's. At first he was reluctant as he said the condition was 'extremely rare' but I whipped out my list and he caved. After having a little peek at my buffalo hump and abdominal stretch marks he went out the room and spoke to his senior. They both agreed I'd made a strong enough case for them to get some more specialist blood tests done to test my cortisol levels.
I had to get myself in for 8.30am to get my blood taken (because cortisol tests have to be taken in the morning, before or around 9am. Mine were taken at 8:50). For usual blood test results to come in it takes between 24 and 48 hours, but the doctor said that for the more specialist tests it may take a little longer, up to a week. This time next week I'll be in Manchester again! I'm not going to be around to discuss the results if they take a week! Annoying.
Anyway so off I trotted again back home, I guess I just had to sit and wait for my results (whilst monitoring my high blood pressure). During this time I google what Cushing's really is (medical explanations) and it scared me a little... it's more serious than I thought and its made me really eager to find out whether I've got it or whether I'm just self diagnosing and finding excuses for my fatness. Three days pass and even though he told me to monitor it for a week or so all my blood pressure readings have been consistently high, so, I decide to give the docs another call to 1. find out some results (if they have any) and 2. get my BP sorted before I go back up to Manchester.
I got told that my retest was completely fine, the original potassium readings were in fact spoilt and I don't have anything to worry about there, but there was nothing on the system concerning my cortisol tests. They mustn't have come back yet... annoying. After researching it, its the one hanging heaviest over my head. I book an appointment to discuss my blood pressure for 11.20am.
Turn up at 11.20 with my list of high BP readings and they proceed to tell me my appointment is actually scheduled for tomorrow (thanks for the inconvenience!) but they're able to schedule me in for an over the phone appointment at 2pm if I wanted it to do that instead. Yeah sure, doesn't really make a difference whether its in person or not. I left my list with them so the doctor could have a look.
2pm rolls around and I get my call. He's seen my list, he thinks the readings are too high and my BP needs to be managed. When he's talking to me about the particular drug he's prescribing me he mentions that he's spoken with the endocrinologist about which was the best form not to effect further test results. Eh? I thought my results hadn't come back yet! Why would you be talking to an endocrinologist if you didn't know if anything was even wrong? I picked up on it and asked him why he'd spoken to them and he let slip that they did in fact have the results and he didn't know I hadn't been given them yet. My cortisol readings were over four times the maximum average. My heart sank.
He said that he has a scheduled meeting with the endocrinologist to discuss it further on Thursday and will send out a letter (I'm not entirely sure what this letter will consist of). I wish Thursday was tomorrow and I'd know whats going on soon but alas, it's another 5 days, so at least another week of questions running around in my mind whilst waiting to see what the next stage is.
It's funny though, how I've found out about my hypercortisolism through so many accidents and chances. First the random blood test, second, the accidental spoil of results and need for repetition, third, the accidental mix up between sodium and potassium, fourth, the googling on a whim before bed and then the doctor mentioning the endocrinologist. If all of those things hadn't happened I'd probably still be piling on the pounds unbeknown to my actual disease.
- Im 21
- Live in London but go to uni in Manchester
- Study Theological Studies in Philosophy and Ethics
- Want to become a qualified teacher (primary/elementary level)
- Am the youngest of four (a brother and two sisters)
- I suffer from a condition called Elhers-Danlos
- My Mum is a big nosey nurse
anndddd I think thats all the relevant information you need to know about me to understand the upcoming life posts.
SO. I'll start explaining what has happened so far at the beginning... it's quite long winded and involves a lot of non Cushing related tests but its funny how it all pans out.
I've applied to do Camp America next year (always loved working with kids, never had the chance to travel the US, right up my street, really), and to finish off my application all I need is to make a cringeworthy video and for my medical form to be signed by a physician. The doctors are pretty useless in Manchester because they have so many students to cater for that they don't really seem like they tend to care and are more interested in ticking you off the list so they can move on to the next hungover student. So I've stayed registered to my doctors surgery in London (who are always very helpful and I always feel comfortable with). Anyway, so off I trotted to get my medical form filled out and while I was there I thought I may as well get a once over to make sure everything was A OK. Long story short, there wasn't enough time to do all the examinations on the medical form to get it completed and I'd have to make another appointment and go back. Managed to get my blood taken though.
Back up in Manchester now and I receive a voicemail (was being a typical student and sleeping when he called) from my doctor asking me to come in and repeat the blood test because my potassium levels came back abnormally high and he wanted to check I wasn't having any palpitations. In my mind, for some reason I decided to take this as my sodium levels coming back high. Anyway, not too bothered, sodium = salt... I know I like my food salty, he'll probably just tell me to stop eating so many crisps. Back down in London in a few weeks, I'll get told off and do it then. (This was a very misinformed judgement by the way, eating crisps isn't what affects your sodium levels. I have a tendency to make 4 by putting 2 and 3 together.)
The message played on my mind a bit because after he mentioned palpitations I was suddenly aware that yes, I do get palpitations, I just tend to ignore them. So when I got back to London I booked an appointment to get my blood retaken and turned to my ever knowing mother for some health advice. Why do I get palpitations and what do high sodium levels mean? Her being a nurse is always reassuring because she seems to know everything about everything and can almost always answer your health questions. Anyway, so I told her about the test and the results coming back abnormal, but like I said, for some reason, I remembered the doctor saying sodium and not potassium. We Googled what high sodium meant (i know you shouldnt google but i just couldnt help myself) and then we came across our friend, 'Cushing's Syndrome'. When we looked at the symptoms it was kind of overwhelming at how many I fell victim to (I'll write another post about them) and we said yep, right there and then, I have Cushing's, I'll ask to be tested for that tomorrow. Then I went to bed.
The next day before I went to the appointment about my blood tests I wrote a list of all the indications I had of Cushing's to take to hear what he had to say. I turn up at the appointment and he quickly corrects me that it was my potassium levels that were too high and my sodium levels and everything else in between came back completely normal. He reassured me that the chances were I was either dehydrated or the results were spoilt because potassium is an electrolyte and the cells can become easily ruptured in transit, but he wanted to check my blood pressure anyway... High. Way too high for my age.
So alas, another problem! He told me he wanted me to monitor it over the next week or so and if I do have high blood pressure we'll need to arrange to sort that out. Now that discussion was done, I dropped in the mention of Cushing's. At first he was reluctant as he said the condition was 'extremely rare' but I whipped out my list and he caved. After having a little peek at my buffalo hump and abdominal stretch marks he went out the room and spoke to his senior. They both agreed I'd made a strong enough case for them to get some more specialist blood tests done to test my cortisol levels.
I had to get myself in for 8.30am to get my blood taken (because cortisol tests have to be taken in the morning, before or around 9am. Mine were taken at 8:50). For usual blood test results to come in it takes between 24 and 48 hours, but the doctor said that for the more specialist tests it may take a little longer, up to a week. This time next week I'll be in Manchester again! I'm not going to be around to discuss the results if they take a week! Annoying.
Anyway so off I trotted again back home, I guess I just had to sit and wait for my results (whilst monitoring my high blood pressure). During this time I google what Cushing's really is (medical explanations) and it scared me a little... it's more serious than I thought and its made me really eager to find out whether I've got it or whether I'm just self diagnosing and finding excuses for my fatness. Three days pass and even though he told me to monitor it for a week or so all my blood pressure readings have been consistently high, so, I decide to give the docs another call to 1. find out some results (if they have any) and 2. get my BP sorted before I go back up to Manchester.
I got told that my retest was completely fine, the original potassium readings were in fact spoilt and I don't have anything to worry about there, but there was nothing on the system concerning my cortisol tests. They mustn't have come back yet... annoying. After researching it, its the one hanging heaviest over my head. I book an appointment to discuss my blood pressure for 11.20am.
Turn up at 11.20 with my list of high BP readings and they proceed to tell me my appointment is actually scheduled for tomorrow (thanks for the inconvenience!) but they're able to schedule me in for an over the phone appointment at 2pm if I wanted it to do that instead. Yeah sure, doesn't really make a difference whether its in person or not. I left my list with them so the doctor could have a look.
2pm rolls around and I get my call. He's seen my list, he thinks the readings are too high and my BP needs to be managed. When he's talking to me about the particular drug he's prescribing me he mentions that he's spoken with the endocrinologist about which was the best form not to effect further test results. Eh? I thought my results hadn't come back yet! Why would you be talking to an endocrinologist if you didn't know if anything was even wrong? I picked up on it and asked him why he'd spoken to them and he let slip that they did in fact have the results and he didn't know I hadn't been given them yet. My cortisol readings were over four times the maximum average. My heart sank.
He said that he has a scheduled meeting with the endocrinologist to discuss it further on Thursday and will send out a letter (I'm not entirely sure what this letter will consist of). I wish Thursday was tomorrow and I'd know whats going on soon but alas, it's another 5 days, so at least another week of questions running around in my mind whilst waiting to see what the next stage is.
It's funny though, how I've found out about my hypercortisolism through so many accidents and chances. First the random blood test, second, the accidental spoil of results and need for repetition, third, the accidental mix up between sodium and potassium, fourth, the googling on a whim before bed and then the doctor mentioning the endocrinologist. If all of those things hadn't happened I'd probably still be piling on the pounds unbeknown to my actual disease.
Hey There
Hey there, I'm Hannah. I'm 21 years old and yesterday my Doctor let it slip that I had hypercortisolism.
This time last week I'd never even heard of Cushing's Disease so I've decided to blog my experience to help people, like me, who don't really understand or know much about it.
As I said, I was only confirmed of having hypercortisolism yesterday, so the whole concept of this disease is pretty new to me. Its quite easy to find a medical explanation of what Cushing's is but what I want to know is what I have to expect in these upcoming months (or weeks? or years? I don't know!) - diagnosis, testing, treatment, recovery etc. The websites and blogs I have found all seem to be American so I thought I'd strike one up and write about the process in the UK.
I'll use this blog as a little release and a nice coping mechanism for however long this journey takes and hopefully documenting my journey will help people in similar situations.
All aboard, journey starts here!
This time last week I'd never even heard of Cushing's Disease so I've decided to blog my experience to help people, like me, who don't really understand or know much about it.
As I said, I was only confirmed of having hypercortisolism yesterday, so the whole concept of this disease is pretty new to me. Its quite easy to find a medical explanation of what Cushing's is but what I want to know is what I have to expect in these upcoming months (or weeks? or years? I don't know!) - diagnosis, testing, treatment, recovery etc. The websites and blogs I have found all seem to be American so I thought I'd strike one up and write about the process in the UK.
I'll use this blog as a little release and a nice coping mechanism for however long this journey takes and hopefully documenting my journey will help people in similar situations.
All aboard, journey starts here!
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