Health | Téa Brennan's Stuff.

Health

August30th

Coeliyuck

Posted in: General, Health
It’s 4:40am and I have been up all night. Not a terribly uncommon occurrence for me, but still, I was tired and hoped to go to bed around 2. The thing is, I actually can’t, because I am doubled over in pain every 5 minutes, gasping for air, while my small intestine spasms and seizes in response to accidental exposure to gluten.

It sucks balls. Like, really, really sucks balls.

The thing that upsets me is that I am pretty vigilant about these things. I am careful about cross-contamination, careful about what I eat… because I can’t afford to be unwell. But every so often, BAM! and I am down.

Jason was going out so I ordered pizza from Dominoes. They’ve exposed me to gluten before – the last time we ordered in fact – and I put it down to a one-off. There have been some odd reactions before, but because I had wine with it, I assumed that was the cause.

So, I ordered pizza for the kids. I had half a slice (I have no appetite) and that was it.

I haven’t eaten today, there is absolutely no other possible source.

And now, for the second time, the Dominos “Gluten Free” base has me in so much agony I can almost imagine dying rather than tolerate it. I came very close to having a dose of Morphine, the pain is so bad. I am going to have arthritic pain for 2 days, all because Dominos can’t seem to take gluten contamination seriously. It’s not a joke. Sure, it’s a bit of a fad thing for many, but geez… noone is going to compensate me for the 2 days I now lose because I need to be in bed, are they? But, who cares, right? It’s just a little dietary thing anyway… I can just go back to eating wheat next week if I want. Sigh.

It is now 5:20am and it has taken me 40 minutes to write this. Because it has literally been in between massive waves of excruciating pain, breathing through, and trying to distract myself and not end up on the floor. It’s just not good enough. It’s one thing to make a mistake, but it’s an ongoing problem. I know where I won’t be eating again… even if it is only half a slice.
August18th

Weekly Doses of WTF: Getting Better, slowly.

Posted in: General, Health
It has been ages since I wrote properly about my health issues, primarily because my Grandma’s brain cancer & the aftermath got in the way of it all and I spent months just getting by, trying to get on with the important things, like looking after her. I have titled this Weekly Doses of WTF, which is an improvement from Daily Doses of WTF…. but… the WTF is still there, simmering in the background.

I saw a GP, who is the brother-in-law of a friend. He had offered to run a bunch of tests on my behalf to figure out what was going on… and there were a few whacky results and I was put on T4 (Eutroxig). My hair started falling out and I saw minor improvements, but it was still not… right. I started the coeliac journey not long after and that made a HUGE difference to my well-being, but I still was not right. I had my MRI & CT Scan and I haven’t seen the reports. But, that friendship got complicated and I didn’t feel comfortable with it all.

So, in May, I saw a new GP. He’s a little… umm… offbeat… but I can’t deny that there has been some improvement. It was a little funny because it’s traditional medicine, fused with complementary medicine, fused with western Medicine… and I tend be a little… skeptical. He felt my pulse and diagnosed me with hypopituitary. Now of course, the bloods reflect that too, as well as my clinical history, so I am not going to be dismissive of the method… but… lo and behold… he actually listened. He actually examined me. He looked at my hairline and my eyebrows and my mouth and my shoulders. And yes, a diagnosis of coeliac to boot. I decided against having the colonoscopy to confirm the coeliac diagnosis – primarily because I am all-procedured-out. So despite me clearly being a raging coeliac, there’s a question mark on it and right now, the gluten free diet helps so that’s all I need to know.

I have across the board deficiencies in hormones, in combination with an absorption problem. But it cycles. Still. Whether the source of these problems are related to an underlying tumour is still unknown… mostly because I haven’t been back for a follow-up since Grandma died (must remember do that!) and I have been feeling somewhat OK. And for someone who has had chronic problems for many years, 90% is a miracle.

I was prescribed a bunch of medications, including Dessicated Thyroid. This stuff has changed my life. I have also been put on low-dose steroids and a few other bits and pieces. In combination with the Cymbalta and the Dexamphetamine… lo and behold… I have lost about 12kg. It’s actually quite amazing, because I have never, ever lost weight. EVER. Even when I don’t eat. Even when I exercise… NEVER. I have also had a diagnosis of Body Dysmorphic Disorder, which has brought a lot of self awareness about my eating disorder, the triggers, the reasons why I behave in certain odd ways socially… and it’s been a massive growth period for me. I seem to have a lot of co-morbid issues, and I deal with them bit by bit, day by day. It sounds like a whole list of crap, but they are all so related, and dependent on each other (eg, BDD as an offshoot of my weight issues) that it is just about trying to feel better rather than a list of problems.

One thing we know for sure is that I am deficient in a whole bunch of pituitary hormones, which means my whole HPA-Axis is out of whack. So that, in combination with the hormonal changes of tubal ligation, plus God knows what other things, and my body is often a bit… hectic.

Generally, I still have zero libido, but I think that is more related to how I feel about my body (and my face) than about hormones… but again, I’ll go through phases of intense “hormone” rushes where I could easily take 30 men on at a time, so there is obviously something underlying going on there. Major hormonal surges of cortisol that will keep me up at night, then crashes that have me in bed all day. The medications I am on temper the severity of the cycling, and for the most part I am doing pretty well, but I would not say I am fighting fit. I have a fair amount of random abdominal pain too, that I have just put down to stress but is probably just scar tissue from all the surgeries over the years.

I saw my other GP (the one I initially wrote the letter to) and he asked if I was going to pursue diagnosis. My answer was, basically, that the issues remain and I have pretty much given up. I said to him that I intend on putting out spotfires, and that if/when things escalate again, I’ll be an Endo myself, and I’ll deal with it then. He seemed disappointed in that, but that is the reality of the situation – there’s just not enough information at the moment. I still have either excess cortisol or none; excess testosterone or none; excess prolactin or none – the list goes on – and there is a quite clear pituitary & hypothalamic disease of some description. But, thanks to Modern Medicine, I can at least put out some spot fires while we figure it all out.

What do I say when people ask what the diagnosis is? It’s hard. People like to have a label for you and define you in terms of your chronic disease. Having lupus, having MS, having Addison’s – they’re not easy but people like to have a path. At this point, it is actually unknown and I am going to 4 different Doctors for various aspects of my problem. So rather than come to a conclusion, I just say that it’s chronic, autoimmune, and a complex dysfunction. That’s about all we can figure out at the moment, but we are making some progress, albeit slowly.

But the fact of the matter is, that a year ago, I needed a cane to walk some days. Now, I am able to move, I can go on a brisk walk, and I don’t have joint pain most days. Even if I haven’t got a clear diagnosis or future, I feel it is worth pursuing ad hoc treatments just to have some quality of life back. I am a work in progress, I’ll figure it out eventually (I suspect some time around menopause!), but in the meantime, I’ll take 20 tablets a day, because no answer and some treatment is better than nothing.
July24th

The Big D.

Posted in: Health, Introspectives
I am going to a charity ball on Friday night for Lifeline. It’s the inaugural Black Diamond Ball and it is going to be great fun. But I wanted to take a moment and just acknowledge my amazing community of Twitter friends, a lot of whom are going to the ball, but who have also courageously shared their stories about their struggles with depression in the last few weeks. I want to particularly single out my friend Seb, who has set up this brilliant blog where he pours his heart out. Tell me you aren’t instantly smitten with this man. I dare you.

Which, sort of makes it my turn. I blogged last week about being diagnosed with ADHD and how weird that is. And obviously with the stresses of the last 2 years (premature baby, financial problems, health problems, Jason’s injury, grandma’s death) it is understandable that even the most rock solid person would be tested. And I am still very much in grieving mode. I am still aching inside whenever I think about my dear Grandma and how much I miss her already.

People spoke to me through this process as if I was coping well, when inside, I really, truly, was not. I am good at pretending everything is OK, but of course Jason bears the brunt of it. I take Cymbalta to help me get through the day and sometimes it is not enough, and so sometimes I smoke or drink to numb when things are stressful.

I have been depressed for many, many years. In fact, if you held a gun to my head I would probably say that I have been depressed for most of my life. Part of it was the curse of being “gifted” and always feeling different to other kids, but part of it was always how I had such a low opinion of myself that I was my own worst enemy.

I am going to confess something to you. It’s hard work. Without a combination of anti-depressants, stimulants, painkillers and hormones, I am a babbling, crying, screaming, irrational mess. This cool, calm, fairly snarky but otherwise quite together person is not only expensive to maintain, it’s hard work some days. I suffer from clinical depression. I need to be on medications for the rest of my life. And I am forever thankful that I live in 2010 where a) I can get the appropriate treatment and b) people, for the most part, don’t judge.

I find it hard to talk about because people still misunderstand. They think that because I am depressed that I am not happy with my life. My Grandma was a big one for never truly understanding that suffering depression is not about being unhappy with your life. She never understood that you could be miserable and suffering even if you didn’t have a reason for it. In fact, it’s really only clinical depression if there is no reason… but she found it hard to believe.

I find it hard to experience real joy. And my mood often cycles. I assume that every single person that meets me hates me, or finds me a nuisance, or whatever. I don’t take compliments. And despite my bravado, I truly aim very hard to please others because I never feel good enough.

I have a lot of anger and resentment about my “parents”, and as much as I try not to be a mean person, sometimes I am. I lose my temper a LOT. I sabotage friendships, I get paranoid and jealous and have been known to hurl things at my husband’s head. It’s certainly… tumultuous.

But, I do OK. I try to be positive and take pleasure in the little moments, and the medications help a lot. But, I just felt like with a few other friends being open about it and me going to the ball, that it might help others to talk about it as well.
July17th

Shiny.

Posted in: General, Health, Introspectives
I have been meaning to write a blog post about this for ages, but with the craziness of the last few months, I haven’t had a chance to write it. I was already going to ages ago, but some recent discussions with friends have made me feel like I need to say something.

It’s actually really embarrassing. And it shouldn’t be. I can talk openly about so many things. My depression and how Cymbalta has changed my life. My health and weight gain and thyroid/hormone problems and pour my heart out… and yet, because of ridiculous, baseless stigma, I am embarrassed to talk about it.

A year ago, I was diagnosed with ADD. It was such a life-changing, paradigm-shifting moment in my life – to realise that I was not lazy, or flawed, or neurotic – I just process information differently to other people around me. It’s embarrassing because so many people think (for better or worse) that ADD/ADHD is not real… or that those “true” ADD people are low achieving, wall & furniture climbing, jittery messes.

Some are. In fact, many of them are. 40% of kids with ADHD have a concurrent learning disorder. It is usually these – the boys – the furniture-jumping, skin crawling, acting out at school kids that get the most attention. It is also the predominant reason why kids who act out are mis/over diagnosed.

I was actually someone who did not believe that ADHD was a real problem. I too had a stereotype in my head of a bad parent failing to discipline their kids, using drugs as a convenience, failing to get to the bottom of the kids problems. It’s a stereotype that most people hold, and it’s often why so many kids are over-diagnosed – and a whole other subset of kids are under-diagnosed.

ADD often manifests differently in girls. They fit into the Inattentive subtype. Most of them are not hyperactive or fidgety. Many of them are not only not struggling, but are actually very intelligent. They daydream. They procrastinate. They are easily distracted and have exactly the same troubles with focus that ADHD kids do – but they often sit under the radar, and it isn’t until they are older that the strategies for getting through the school system start to unravel.

Because it’s one thing to turn up to school on time and another to manage the multiple stresses of being a grownup.

I did well in school because I was ‘gifted’ and coasted. And I’ll be honest with you, I never actually did anything. I skim read, used my photographic memory and gift for language not only through high school, but through my Undergrad degree and my Masters. And also made use of ability to hyperfocus on things I am interested in. But, when I think about it, I don’t think there was one prescribed text I read all the way through. I would say that I have a Masters in Bullshit.

I am one of the lucky ones. But it only makes sense now because of an accidental diagnosis, a whole bunch of testing, and a bucketload of reading, that all of these “personality flaws” really did just come under a banner. Drugs treat about 60-70% of it, but I have to make up the difference.

The thing about ADD is that a lot of the problems of the disorder, much like anything in the DSM-IV, occur in normal people to some degree. I mean, look at the definitions for most personality disorders and we can all relate on some level. However, the difference between a normal person and a person with a disorder is with functioning.
- Everyone procrastinates. I am a chronic procrastinator to the point where it damages my functioning. The only thing that motivates me is fear, shame, or being broke.
- Everyone gets bored. I cannot listen to someone talk about anything I am not interested in without drifting off. Every. single. time.
- Everyone runs late. I consistently run late & fail to allow proper travel time.
- Everyone gets distracted. I am perpetually distracted and lose days.
- Everyone gets annoyed by noise. I cannot handle even small amounts of noise without it stressing me out.
- Everyone is tired. I am exhausted because I cannot switch my brain off at night.
- Everyone has trouble finishing things. I very rarely completed anything 100%.
- Everyone is excited about the future. I move so quickly and am so focused on the future I find it hard to see what is directly in front of me.
Ticking clocks, traffic noise, children noise, buzzing lights, radios, airconditioners annoy me to the point where I have to wear ear plugs. I have to have software that kills all social media, all websites, email, games, and all other possible tools, including Photo Booth, when I need to read or write.

Now of course, this used to just be “Téa”. Cranky, unbearable to be around, haha-so-funny-how-she-procrastinates. The famous “death stare” (which was really that moment where I’d drift off mid-conversation). But it stopped being funny and started causing me severe anxiety and depression…. because I just couldn’t function.

And yet, I am still embarrassed to talk about it. I have heard stories of young girls in private schools being prevented from doing TEE subjects because of their ADD. I have seen the press openly mock ADHD kids. I have seen this myth that ADHD = perpetual fuckup for so long that I even believed it.

It’s really just a difference. It’s given me understanding of why I find every single day so overwhelming and stressful – why I hate my mobile phone with a passion – why things that I know I am capable of are a struggle. And it’s just because I am different. I am also gifted in many ways – my memory and reasoning and other tools I have adopted to compensate are quite remarkable.

It saddens me that there are a whole generation of people who are told they are fuckups, or have an invented disorder, or suffer from depression and anxiety, who may not feel comfortable in either seeking diagnosis or talking about it. Because yes, I take stimulants to concentrate, and as a result I am a force to be reckoned with! I am not high, I am most certainly not “speedy”, and I am nowhere near “hyperactive”. I am a fairly quiet, smart, capable woman who has a different way of processing information.

I hope that others can eventually start to speak out against the stereotypes associated with ADD/ADHD, mental illness, Autism, Asperger’s – any of these things. Because it is only when we identify ourselves that people realise things aren’t as clear cut. And they may think twice before judging, or a parent may reconsider taking their kids off ADD drugs because of misconceptions or stigma. Or they may not feel like they have failed. And everyone has something that makes them different. I have medicine and tools for mine, luckily, and as a result I can go on to study Medicine. And yeah, I may occasionally wander off, or get distracted by shiny things, but, you know, that’s fun. When it’s healthy.

So as embarrassed as I am, I am writing this here that I have ADD. I am a flake. I struggle to focus on a daily basis and that’s OK.

Who’s next?
May1st

We are all stronger than we realise.

Posted in: Health, Introspectives
I always knew it was coming, and I frequently worried how I would cope when I got that call. My Grandma Chris is 79 years old in December… and as much as I hoped she’d live forever, I knew that every year she was getting just that little bit more frail and that it would come eventually.

But not like this.

My Grandma Chris is the single greatest influence in my life. She is the woman who raised me in my formative years; the woman who laughed with me when there wasn’t much to laugh about; the woman who filled my school lunch box with so much food I was able to feed half of my class. The woman who was there for me when my mother wasn’t. Who bought me my first sanitary pads, bought, washed & ironed my clothes, lent me money, screamed at me, sometimes quite mercilessly tortured me. She was always that one constant in my pretty tumultuous upbringing. She is the source of my world view – that person who keeps me humble and who I am more like than I care to admit.

So when I say “my Grandma is sick and I need to be at the hospital every day”, I get this look, like… “it’s not your Mum“. She’s just my Grandma and Grandmas are old and Grandmas die. But to me, this is not just a Grandma. She is my rock.

She is the toughest, most hard working and kindest person I have ever met. And honestly, while I knew in the back of my mind that she was getting old, and Jason and I had often had discussions about how I will deal with her death… now that I am facing it’s inevitability, I am a little bit mad at the world.

Grandma was born in Tipperary the week before Christmas in 1931. Her mother was unmarried. In Catholic Ireland. In the THIRTIES. She had 2 older brothers and a younger sister, Josephine, who died from a tonsillectomy when she was 7. Around the same time, her mother died in childbirth. Her father didn’t give a shit, so her uncle paid for her education at a convent in Cork.

My Grandma grew up in an Irish Catholic Convent during the Second World War. She worked her whole life. She worked 2 jobs, often cleaning offices. Never smoked, never drank. Never did anything but work and raise her 2 sons. She doesn’t talk much about her childhood – her memories are always positive and usually avoid nun-dodging.

She is the toughest, proudest, most stubborn old bird you could ever, ever meet. She can be ferocious – and it would be a disservice AND a lie to not acknowledge that I was often afraid of her. But holy fuck, is she funny. She has that Irish “oddness” about her, and noone can make me laugh like my Grandma. Even now as she lays in her hospital bed, we laugh.

But the thing that makes me angry is that despite all of the shit-on-a-plate that she has been handed in her life, her faith in God is unerring. God and Mary and Jesus and rosary beads and Catholic ritual are all so important to her, she is so genuinely hurt and afraid for my mortal soul. Because I don’t believe in God. I believe in God so much less now, if that’s possible, than I did a week ago.

Because now, this woman, who has led one of the most virtuous lives I can think of, is faced with either pancreatic cancer that has metastasised to her brain and lungs; a primary brain tumour that is inoperable and advanced; or a benign brain tumour that will still only give her a year tops. The woman who worked hard; never smoke, never drank, saved every single cent beyond what was necessary – lived a very humble and faithful life – is being rewarded with a painful and potentially undignified end. So FUCK God and his plan. But I don’t say that to her.

We have been waiting 8 days to get an MRI so we can find out the prognosis. The only thing that keeps her lucid is the dexamethasone, but she is on a downward spiral. How fast it’ll happen remains to be seen, but if she can she’ll come home with us. I feel that it is the least I can do. She looked after me when she didn’t have to. She never lets her guard down with anyone but me – and for that I feel privileged. I know that she is embarrassed but she lets me help her. And it is not an obligation, it’s an honour.

And I am dealing with it much better than I thought I could. I visit the hospital every day for a minimum of about 4 hours, I do her washing, make sure she’s eating, chat to her, fuss over her, remind her again that we have taken care of everything… and in a weird way I am enjoying the time I get alone with her. And now, facing her death is not so scary. Through trying to be positive for her, I end up holding it together.
March16th

The benefits of actual diagnosis? I’m wondering.

Posted in: General, Health
You may have noticed that the Daily Doses of WTF blog was amalgamated into this one… I just thought it was more economical and it has roughly the same amount of readers anyway… so… yeah.

With all the hoopla that has been going on, I haven’t been able to write or update much about the health/diagnosis/treatment situation.

I’ve been on thyroid meds for a while, and they are working a little. I think that it’s going to be a bit of a journey of finding an optimal dose, and I am going to try my luck at getting a script for natural thyroid… which apparently for subclinical Hashimoto’s, anecdotally, seems to work better.

I have noticed some pretty bad depression sneaking in, lately, too… but SSRI’s have never been very effective. The only thing that has ever touched the depression was the Duromine and Dexamphetamine. Again, there seems to be some evidence that a Dexamphetamine/Fluoxetine combo is a more effective treatment for thyroid patients. That’s going to be a really hard sell, what with Dex being a controlled substance… but after things stabilise I think that may be the next thing to address. Apparently some Doctors prescribe Zyban off-label with similar effects… but it lowers the seizure threshold… and given my propensity for seizures, I don’t know if they’ll be willing to take that risk.

But all in all, I think we are on the right track with the thyroid treatment. It’s just a matter of getting the right combo of treatment, isolating a proper cause (ie the rate that antibodies are affecting things, if there is a hyper/hypo cycle, if there is also adrenal fatigue, basically just watching, tweaking, waiting… which drives me crazy).

I still need to see a decent Endo who can help me with the finer details.

The biggest change, though, has come from my decision to try a gluten free diet. Between Hashimoto’s and Coeliac, all of my symptoms are pretty well explained. It also came as a bit of a surprise to learn just how many members of my family have a similar auto-immune combo happening. So, it almost seems obvious now that I think about it.

My Doctor advised me to try the thyroid meds first, before trying a gluten free diet. It is also harder to get a diagnosis of coeliac if you go on a gluten free diet, because everything starts to heal (and you need to consume gluten for 6 weeks prior to testing). But 2 weeks after starting the thyroid meds, I started to become more aware of the quite severe gastrointestinal issues and honestly? I just got sick to death of being sick.

So last week, I started a gluten free diet. My improvement was noticeable. Not remarkable, but very much in line with what other coeliacs I know have experienced – an initial relief around 36 hours, and then a gradual feeling of wellbeing when the diet kicks in. I keep making some mistakes, like assuming that there is no gluten in chicken stock ( the risotto was still yum…haha), and I am eating more carbs than I ordinarily would (just because I am learning and rice crackers are a safe option), but I think I am on the right track.

Which leads me to the question: is it worth pursuing the diagnosis of Coeliac Disease?

There are a couple of reasons why I wonder this, but the main one is that all I ever wanted to do was feel better and have an answer for it. I am some way towards having an answer, and for that I am happy. Our whole family is going gluten free, we plan to make it a non-issue (given the genetic component of Coeliac, the kids will probably benefit), and, you know…

To be able to get the diagnosis, I have now basically committed myself to 6 weeks of eating gluten again (with all the gut pain and stuff that goes with it), plus a general anaesthetic, a biopsy, test results and all that crap… and the lottery of possibly not getting a Doctor that is half decent… and that whole mousewheel turning thing.

The fact of the matter is, I am PETRIFIED of any more medical procedures. I have been way too sick way too many times – been poked, prodded, stripped naked, lungs collapsed, complication after complication including sepsis and coma… and you know, I just don’t want any more if I can avoid it.

Should I just be happy that I am on the right track, or should I pursue the formal diagnosis? I know in Canada that they give some concessions & tax benefits for gluten free products… is it like that here? I finally feel like there might be an answer, after over 23 years of not knowing how I would feel every single day… and I just want to move on.

Do you have any advice? Should I go through all the testing? What would you do?
February24th

Test Results Back

Posted in: Health
Well, it’s been a hectic few weeks, what with moving house, MRIs, CTs, bloods… all that stuff…. that I have neglected my blogs. I thought I had better update everyone here, seeing as I am asked a lot how it’s going.

So, I had an MRI of my Pituitary Gland. And I had a CT scan of my Adrenal glands. But by the time I had finally gotten in to have them, my mind had somewhat shifted… because I received my blood results back.

I am Iron Deficient.
I am Vitamin D deficient.
I am Vitamin B12 deficient.
My TPO Antibodies are 4 times too high.
My Free T3 is in the upper normal range.
My Free T4 is in the low-normal range.
My TSH was 3.02.
My Potassium is looking high, but needs retesting.
My Reproductive hormones are not consistent with my cycle dates (possibly to do with my tubal last year).

When you add this to the other symptoms, it points towards Hashimoto’s Thyroiditis with possible Coeliac Disease.

So it looks like I am a plain old horse.

To be clear, I have in no way self-diagnosed this and I am working with my new GP to pin down a formal diagnosis, but in my travels I learned a few things:

1. Amphetamine use can artificially mask TSH bloods to look better than they are.
2. Metformin use can artificially mask TSH bloods the same way.

I have been on both drugs over a period of years to treat the vague symptoms associated with what now appears to be a screwed up thyroid. The “normal” TSH was always the puzzling part, but learning the subtleties of Thyroid blood tests means that I now know a whole lot more than I used to. And I know that those? Well, they are some rather abnormal bloods.

Cushing’s is certainly not off the table 100% yet, but it makes a lot of sense. Especially seeing as:

1) I have a strong family history of autoimmune thyroid disease, both Grave’s and Hashimoto’s
2) Strong family history of other autoimmune disease, including “irritable bowel” and “rheumatism” (those lovely generic terms the older generations use :))
3) When I was 9 and first started to feel severe fatigue and unwell, I had a large mysterious lump appear on my neck. Well, yes, that might be because it was a GOITER? That bit I can’t prove, but hey, it adds to the picture, right?
4) My crazy list of chronic symptoms that very much mirror cyclical Cushing’s, can also be explained by HYPERthyroid and HYPOthyroid phases that have happened recently in response to an increasing autoimmune attack on my thyroid.
5) I’ve been on thyroid meds before and they helped.

The Coeliac thing? Well, that’s because of lots of gross reasons noone needs to know about… but let’s just say, I have always suspected that I am intolerant of… well…. FOOD. But have never been able to pinpoint it. And the deficiencies and quite common association between the 2 diseases accounts for about… 99% of my symptoms.

And the other 1%? Well, maybe I am just a bit fat and womany and tubal-y.

I am going to the Doctor tomorrow and will be discussing this with him and hoping that we trial thyroid meds to see if it helps with the symptoms.

I still, obviously, have a failed Dex suppression test and Adrenal style crashes… but I am going to wait and see how we go.

NEIGH.
February8th

While the jury is out, they hang the defendant.

Posted in: Health
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.
January25th

Half full glasses, self doubt and… arseholes.

Posted in: Health
I am crushed.

There is no other way to describe the appointment with my Endocrinologist today, except to say that I will never forget this day for as long as I live.

Remember how I said I had lap-banding and nearly died? Remember how I said that my Obstetrician nearly killed my baby? Remember how I had a whinge about my GP? Well, let me tell you. I don’t think I have ever felt more humiliated and let down by the medical profession than I was today.

I am starting to think that the problem is me. That I have some sort of persecution complex with Doctors and I am somehow suffering from a delusion that I am sick. I really, honestly, am starting to think that I might be a hypochondriac and not know it. I am sitting here, thinking how, with all of these doctors treating me SO badly, the only common denominator is me. I’d have to be crazy to not start to think that *I* am the problem, right?

But I am lucky, because my lovely husband was with me today and can’t believe the way I was treated today either. I did absolutely NOTHING wrong, and I was shot down in flames so fast that I walked out at 2pm and haven’t stopped crying since.

I actually went into the appointment feeling quite optimistic. I mean, the test results were not helpful, but there were a few little weird things that at least warranted investigation. As much as I have a whinge, I am generally an optimist, and in the car on the way there, we talked about the things I needed to remember (I am having trouble remembering things lately) and I was generally optimistic that the doctor was open and looking to actually help me out.

And this, kids, is why optimism can sometimes be a bad thing.

It was the TOTAL OPPOSITE. It was demeaning.

He sat me down and straight away said "Your tests were normal"

"Uh huh". (I expected that because I had received the results and they would be with the test he did). "So, what next?"

"You don’t have Cushing’s, but if you want we can order some 24 hour urines for when you think you’re high", which, with the tone in which he said it, basically implied that he was happy to hand me piss jugs to appease my hypochondria.

I tried not to overreact to this, and was prepared for it. The last time I heard "if you want" it was from the Obstetrician refusing to do growth scans on my baby who hadn’t moved substantially in 13 days.

I said that 24 Hour Urines will show normal for someone who cycles like I do. I am low in the morning and high at night, and therefore it won’t show up (this is true and documented in Endocrinology journals, not just anecdotally).

The second I had finished speaking I knew that I was going to get nowhere. I was also prepared for this.

I said to him that "It’s nothing personal, but I am being proactive and have ordered midnight salivaries from Pathlab, because salivaries are a better way to catch midnight cortisol peaks (again, documented in journals) for me – because my symptoms are worse at night".

At which point he pretty much lost all reasoning and lost his cool. I showed him the Pathlab forms and asked if he would sign for them so I could claim the tests on Medicare and he point blank refused, but said that he’d be willing to look at the results. OK then.

So I also mentioned that I was going to seek a second opinion in either Melbourne or LA. He said he was friends with the one in Melbourne and bascially then implied that even though he wasn’t bothered by me seeking a second opinion, that it would be a waste of time. Of course, I was still being a bit dumb at this point, thinking that I could somehow appeal to him. From this point on he pretty much made it clear that he didn’t want to see me anymore.

I got upset and asked him if there was anything else he can do. I also said that I am the one who has to live with this, not him, and that I am NOT pissing in jugs for a year when there is an easier way. All bets were off at that point. He became very aggressive.

"I think you are fixating on this ONE disease that I don’t think you have."

Now I have never, EVER been fixated on it being this one disease. I mean, in this blog yesterday I even SAID that if its not Cushing’s, then there is something ELSE that is similar, that I am OPEN to the idea that it isn’t, and I have never once suggested otherwise. In fact, I had come to the appointment today, ready to ask him for other tests to rule other, more common conditions out.

I said that my thyroid should probably be checked, plus other levels. He POINT BLANK REFUSED to do any more testing on anything other than Cortisol.

He kept saying "You don’t have Cushing’s". I finally snapped and said "THEN WHAT THE HELL DO I HAVE?"

At this point I burst into tears, and then said to me, sarcastically, "WELL THEN WHAT WOULD *YOU* HAVE ME DO?!"

"I would order midnight salivary tests and an MRI/CT". I told him that I have the cash to pay for an MRI and I was going to do it with or without him.

He then said "I am not imaging you because 20 % of people have tumours. And if we find a 5mm tumour you might think you have Cushing’s".

I snorted a little bit at this point…

"So, what do I have then and why aren’t you prepared to do any tests?"

He sat there for about 5 seconds, quiet, and then finally said "not my problem".

Quiet again.

"Look, chances are, we probably won’t know what you have.".

At this point I was SO angry at what I was hearing. I finally lost it and said "NOONE HAS EVER BOTHERED TO TEST ANYTHING! No ANA, No hormones, NOTHING. So how can you POSSIBLY tell me you don’t know what I have when you haven’t even bothered testing anything?"

I then asked if he could suggest a Doctor for me.

He said "go back to your GP, I am writing him a letter."

At which point I said that my GP was useless, he was useless, and I walked out. And paid the $115 bill.

So now, I am in a position where ALL MY FAITH IS GONE.

So not only did he deny I had Cushing’s, he flat out refused to test for any other Endocrine disorders despite a long list of symptoms which include me blacking out with seizures (3 weeks ago) and my heart showing problems again.

And now, I am just defeated.

Yet another doctor. Yet another session where I end up crying because noone is listening to what I am saying. I keep asking Jason if he is sure I am not a hypochondriac – and that I would be ok with it if he said I was. He insists I am not.

I am now in a position where I think my daughter has asthma, and I am too afraid to go see my GP because it all starts again.

What on earth did I do to deserve this?

But despite all of it, I am trying to retain my optimism. I am trying to see if there is a way to ensure that it doesn’t happen to other people… and I am trying to get more actively involved in Participatory Medicine campaigns. I have friends who are going through the same thing as me and you know, enough is enough.

I have money – I can pay for MRIs and tests out of pocket if I need to. Many can’t. Worst case scenario, I can go to Los Angeles and see Dr Friedman. Others can’t. Which gave me an idea to set up some sort of fund or group that helps patients like me to get to see good specialists. I will eventually be able to run this organisation, but also have a clinic. So it crystallises my future a bit more… but you know… right now, I just want it all to be cured.
January24th

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

Posted in: Health
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.