All posts tagged Cushing

While the jury is out, they hang the defendant.

by admin on February 8, 2010 in Health with No comments

It’s really been a bit of a shitstorm since the last post, where a lot has happened quickly. Faced with very few options, I asked my friend if he would see me at his clinic and help me to order tests. I saw him, he listened, and ordered me the tests, not because I am a friend of his, or because I am calling in any favours, but because he actually listened to me. He’s a good Doctor.

I am now awaiting a bunch of results and an MRI & CT scan next week, and I am going a bit nuts waiting, frankly, because I really just want it done with. I gave a stack of blood on Saturday and my Salivary test results should be arriving tomorrow. I am really nervous about what they’ll show.

I received a letter last week from the Endocrinologist to my GP, which, predictably, dismisses everything based on some normal urine results and a suppressed dexamethasone test. His letter was clinical, non-committal and quite obviously acutely aware that I am pissed off.

Of course, with me having nothing to lose anymore, I decided to write an email that clarifies said letter.

I received a final letter from Dr Endo to GP last week and I would like this email on both files again please. I used to be concerned about being labelled as a nuisance, but I don’t care anymore because it seems to be happening anyway.

–

I would like it noted that Dr Endo’s report to Dr GP is not my recollection (please note that my husband was present at this appointment too and can verify my account):

1. Cushing’s was never something I was “convinced” of. It is an idea, that I presented to my DOCTORS to exclude as a possibility. A single dexamethasone suppression test is not diagnostic for Cushing’s, and Australian Doctors are notorious for being backward when it comes to the diagnosis of it. This is exacerbated in cases of cyclical Cushing’s. I naively thought that Dr Endo would be open to an empowered, informed patient and suggested (at both the initial appointment and follow-up) to him that midnight salivaries (that I was self-funding) are often more reliable and that there are hundreds of proven cases of Cushing’s that showed normal UFCs and dex suppression. He interpreted this, quite clearly, as me being “fixated”.

To be fair to Dr Endo, he initially offered me a whole stack of 24hr urine jugs with lab forms to test when “high”. Unfortunately, the way that I cycle (having charted symptoms for 2 months) will make it difficult to catch and it can take years to get it. I suggested that either a) midnight salivary cortisol or b) midnight plasma cortisol would be a better indication (according to expert Cushing’s Doctors) for someone who cycles. I merely suggested something that would take 3 months over something that could potentially take years. I would think that I would get a say in how long I suffer with symptoms for, and that if there is an easier test that is quicker, I should be allowed to suggest it.

I am far too busy to be sick and want to minimise that time wherever possible. I have exams to sit, a business to run & 3 kids. I don’t have time to make up diseases.

2. In the appointment, Dr Endo specifically said that despite all of my ongoing symptoms, he was unwilling to do even the most basic of hormone testing, including thyroid antibodies, Vitamin D, Ferritin, Aldosterone etc. I also suggested an MRI & CT scan, which I said I was going to pay privately for with or without him. I have those booked next week, FYI. His answer was “then you’ll think you have Cushing’s”. I want to make it clear that I know that these tests are NOT diagnostic but add to the picture. I am merely collecting information so that the next time I see an Endocrinologist/Immunologist/Internal Medicine Specialist, I don’t waste my (or their) time, which Dr Endo clearly seems to believe I have done. I stated in the appointment that I am aware of the stats re: incidentalomas. But you know, if there’s a big fat tumour sitting somewhere that’s obvious… it might help.

3. When he said that I do not have Cushing’s, when asked, quite genuinely, what it could be, his words were “not my problem” “go back to your GP”.

I would like it noted that the appointment was demeaning and humiliating.

Now I am pursuing privately funded testing. I am ordering Midnight Salivaries & Adrenal Stress Profile Tests from Pathlab in Victoria. I am having a privately funded MRI & CT scan. And I am not seeing any other Specialists until I have the proof I need. It may not be Cushing’s, but it’s something. I am open to MS, Lupus, plain old Syndrome-X, or ANYTHING else that explains my symptoms.

I have a GP friend who knows & believes me and is helping with the testing, and a phlebotomist who can take my midnight bloods. I know a lot of Doctors & medical community folk and am finally pursuing Med School myself. I am not an idiot and don’t appreciate being treated like one.

GP, I will keep you updated. You are most welcome to call me about this if you need to or reply privately to this email.

Naturally, after the last appointment I was really, really upset and shaken and genuinely started to self-doubt. I actually spent 3 days, repeatedly asking Jason if he thought I was a hypochondriac and that it was OK if he thought I was. He insisted I wasn’t.

I also found out that someone I thought was decent was reading my Twitter feed and calling me a hypochondriac to anyone who would listen. Honestly? I don’t know what to think anymore. I know in my heart of hearts that it’s not true, but boy did it cut deep. I don’t blame her for being so nasty… at least she is brave enough to say it out loud, I guess. It makes me wonder just how many people are thinking it and not saying it, though.

But now, it really is just a process of exclusion. If the test results come back normal, then, for now, I am just going to give up. There are a couple of things we can test after Cushing’s, like for autimmune diseases and stuff, but after all of this stuff going on… I am just tired. I’ll just have to learn to live with it, and hope I get sicker so I get taken seriously.

I have no idea where this is going, but I needed to update.

by admin on January 24, 2010 in Health with No comments

Prior to all of this Cushing’s business, and after being treated abhorrently by an Obstretrician that resulted in the premature delivery of my 3rd baby… I was starting to head into a good place… or at least, an understanding with my body.

There were always just these "odd things" going on with my body that I could never explain. My body never responded to diet & exercise the way it does with other people; my body would always make sure I got postoperative infections; my body would grow extra electrical pathways in my heart causing an arrhythmia; I had trouble conceiving my children…. and you know… just…. other weird stuff that you don’t really think of until a picture starts to form.

Up until October 2009 (when my symptoms just hit and I headed on this major progression of disease), I really just thought I was doomed to a life of little ailments. You know, gall bladder removal here, catheter ablation on my heart there, lung collapse here, D&C for painful periods there… you know, just… lots of… ailments.

And then, all of a sudden and I was plunged into a year of severe, unrelenting stress and my body said "FUCK YOU I AM GONE" and my adrenal glands decided they had had enough and since then, they never call or email… and just pop around occasionally to punch me in the face and then leave again.

And it took a Doctor friend of mine saying in a social setting, that Addison’s disease can cause a lot of my symptoms that sort of led me to revisit it’s evil twin, Cushing’s.

And you know, there are days when I still majorly doubt my self diagnosis, despite a 20 year journey of finding out what the hell is wrong with my body that is causing all these "ailments"… I still default to the idea that Doctors actually know what they are doing.

But it’s not the fatigue. It’s not the weight gain. It’s not the preeclamptic pregnancies or the quite obvious muscle wasting that is going on. Those symptoms ARE easily explained away by at least 50 different illnesses. And honestly? if I walked away with a diagnosis of fibromyalgia, or Hashimotos, or Lupus, or whatever the hell else… and the Doctor actually had made the effort, then that’s fine.

Because you know what? It’s not easy at all but if I am fat for life, I am fat for life. I have reached a level of self-acceptance about it, that as long as the Doctor can backup his diagnosis, then I walk away, a little embarrassed at having self-diagnosed on the internet, but eventually getting over it and just learning to accept myself.

But like I said, it’s not the big, generic symptoms that have led me here.

Prior to this, I always just assumed that I had some form of SLE (Lupus) that was attacking various parts of my body. It was not even close to being a fit, and Lupus attacking the brain is even rarer than Doctors claim Cushing’s is… and it was never a full fit. There were things that I just didn’t have, but because there was not really any other explanation, I kind of just decided to see how it progressed.

But of course I knew it wasn’t.

Even 5 years ago, when I first started reading about all things endocrine, Cushing’s seemed like a better fit. It explained so much… but because I didn’t have what I thought was the definitive body type… it was always momentarily considered and then dismissed. Because noone wants to go to a Doctor claiming that they are an atypical case for a rare disease. That’ll just make them laugh you out the door with a script for sugar pills.

But, over time, it would keep popping up every time I tried to figure it out. No hump, no moon face, no thinning arms. Momentarily considered, dismissed.

See an Endocrinologist who suggests Cushing’s and then does not bother testing because I don’t have the Cushing’s body type. Dismissed.

And then I got sicker.

It started to feel more urgent, and then I read more and found the Cushing’s Community and it turns out you don’t actually HAVE to have those physical features and most Doctors, having no experience with Cushing’s, and generally having had 5 minutes dedicated to it in their whole medical training, tend to refer to images of 1 case, with all symptoms, in what would be considered Stage IV Cushings if it were cancer.

So for those at Stage 1, 2 or 3…. they are fobbed off for years until the disease progresses to the point where they can’t actually ignore it.

I was gobsmacked to find this out…. because comparing my body to ACTUAL REAL LIFE CUSHINGS PATIENTS, with confirmed pituitary tumours, instead of a diagram, HOLY SHIT BALLS THAT IS MY BODY.

But you know, I mentioned that it’s not just the big stuff. It is the tiniest of tiny little upsets, where altogether, they equal one thing… I gather little snippets of information and I am boggled at how upset my whole endocrine system is by this one tumour.

It’s why I can’t eat straight carbs without feeling sick, but if I balance it with protein or fat, I am fine. It’s why I can be handling stress so well for months that I am immune to it and even thrive on it one minute, and then plummet into an emotional wreck over the dumbest things at other times. It’s why I am dependent on Caffeine & other stimulants. It’s why alcohol makes me sick. Its why my face frequently feels like it is on fire. It’s why I go from craving social contact to not even wanting to be around my own children. It’s why my singing voice can be pitch perfect one day and completely off the next. It’s why my induction with my first pregnancy never worked. It’s why I have a sitting body temperature of 35.2 degrees and why I get infections & have slow healing sores at one time, but in times of stress (like said premature birth, I heal miraculously). It’s why my heart is having problems, it’s why my stomach conspires with satan to have a crap in my throat from the reflux. It’s why I suffer with acute liver pain that lasts for days, it’s why I get flank pain. It’s why I get angry in my sleep and scream. It’s why I get IBS symptoms. It’s why I gain weight despite best efforts. It’s why I have poor vision somedays, and good vision on others. It’s why my eyeballs twitch. It’s why I lose control of my hands. It’s why I can’t sleep, and when I do, it’s restless. It’s why Prozac, Lexapro, Citalopram, Effexor and the countless other crap that I have been given doesn’t reduce my anxiety. Because my anxiety is not neurological, it’s hormonal. It’s why Metformin didn’t work, and Duromine & Dexamphetamine still made me gain weight and make me sleepy. It’s why I have never had a sex drive to the point where my husband thinks I don’t love him.

And that is just 35% of the day to day crap that Cushing’s explains. But, you know, my arms aren’t thin so here I am, with a burden of proof that no patient should have to have. I am competing with a diagram of a Cushing’s patient from an ’80s medical textbook.

Because it’s not normal to have pain and this many ailments at 30 years old. It’s not normal to eat better than everyone else you know and be 3 times their size. And it’s not normal to be able to rattle off a list of shit like that that is 35% of your symptoms and have a Doctor go "it’s just cuz you are fat. You need to be less fat".

So yeah, I have another Endocrinologist appointment on Monday. I am requesting an MRI and a plan to catch the highs. I have recevied my salivery tests from Pathlab, with the intention of trying to get some midnight cortisol readings that help my case. i am going to the Doctor and asking him why he is so afraid of MRIing my pituitary gland and having a CT of my adrenal glands… and if he says "but 20% of people ave inactive pituitary tumours" I will say: FUCK YOU DOUCHEBAG and refer to the 80 or so symptoms and say GOT A BETTER IDEA?

I owe Google my life.

Onwards, upwards, forwards… and probably backwards.

by admin on December 1, 2009 in Health with No comments

I created this new blog so that I don’t bore my usual readers with “Cushing’s this, Cushing’s that”, “brain tumour this, bones hurting that”. I can tell it’s already becoming tedious to some people and so, I have separated it out so that those who are interested can read – and those that aren’t, well… I can write a bit more freely on a single-topic blog than on a general one.

Because I want to talk about it.  A lot. And whilst it may seem like I have a sense of humour about how much I actually talk about it… well… I kind of don’t. Because it’s scary. I just need to talk about it. Yes, I am boring. Yes, it’s all Cushing’s Cushing’s Cushing’s. But right now, I am somewhat pre-occupied with it, because I am in that lovely period of limbo we call “waiting to see a specialist”.

I do not yet have a formal diagnosis from an Endocrinologist, but at this point, I honestly believe that it is a technicality. For 20 years, I have suffered from the exact symptoms of a pituitary tumour, but a combination of parents-who-don’t-give-a-fuck and Doctors-who-hate-fat-women, it has been very hard to reach this point.

It just all fits. I either have 8 illnesses, or I have one. Occam’s Razor tells us that I probably have one, and nothing else fits.

And I am not at all alone in my struggle for diagosis. Cushing’s is rare. Probably not so much because it is actually rare, but more likely because it is so difficult to diagnose, even with a Doctor who is vigilant, empathetic, and treats weight gain as a symptom rather than a deviance.

So whilst a diagnosis of Cushing’s is not a foregone conclusion, by the same token, I have been on a journey for 20 years, trying to find out the source of my ongoing health problems. It has been raised before, but I was dismissed without testing because… well…. I don’t know why.

So after fighting for a long time, I finally got a test, and I failed it.

It is the first test of several that I will need to undergo over a period of months… but I have never been so sure of anything in my life… because when I read other people’s Cushing’s stories – they are describing me. Not in that hypochondriac way…. but uite literally in that — EVERY LITTLE THING THAT HAS EVER BEEN WRONG WITH ME IS EXPLAINED kind of way. Like… noone could ever possibly know about that little symptom that I have never ever mentioned because its too embarrassing… and guess what? There’s a reason for it.

And I failed the first round of tests…

And I wasn’t exactly surprised.

So right now, I cycle between too much cortisol and not enough – between waking up suddenly at 3am (even after taking sleeping pills that would sedate a horse!), and then other times, unable to stay awake in the middle of the day, with severe muscle & joint pain that nothing touches – all in the course of a 24 hour period. One thing I am sure of is that my Adrenal glands are fucked. Now, WHY they are fucked is still a mystery, but I hope to keep people updated here.

I’ll probably spend the next couple of weeks writing background posts, trying to document how I feel, talking about my history and just filling up some background for my appointment in 3 weeks.

So, my friends, buckle yourself in :)