Hormones, dating and other facts of life

Well the news since the last post regarding my health, is that I underwent the Insulin Stress Test (IST) and got my results. The IST is a test during which you are placed in hypoglycemia and blood samples are collected every 30 minutes for two hours, to check your body's hormonal response when placed under stress. It was a fairly unpleasant experience as anyone who has ever been hypoglycemic can relate to. The target was to get my blood glucose down to around 2.2 (Normal range 4-6) for the results to be valid. My blood sugar level dropped to 1.3!! No wonder I felt like shit!!

It appears that my cortisol levels lowered during the test, indicating that my body is unable to secrete cortisol in times of stress. This means that I still have cortisol deficiency and should keep taking my hydro (good news actually!). The report also states that there was no growth hormone secretion throughout the test and in fact, we already knew that my levels were low if not inexistent. What this means is that I will probably have to discuss growth hormone replacement as this might help alleviate the fatigue I've been feeling. Growth hormone is responsible for distribution of fat and brain functioning among other things. So don't think it's only important in kids, we ALL need it.

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Apologies for not posting on Wednesday evening as promised but I just couldn't bring myself to do it. It is with a heavy heart that I write this post already and if I had written it on Wednesday it would have been filled with anger and despair. That is not to say that this post will be full of joy and optimism but at least after a couple of days I've been able to digest the bad news and vent my emotions out.

D Day

So I finally heard back from the hospital and I will be meeting the Multi-Disciplinary Team (MDT) on the 11th of December to discuss my IPSS results and what my treatment should be. The nurse I spoke to on the phone did say that they are suggesting another pituitary surgery which was to be expected since the source of my Cushing's is pituitary. However, we will be discussing alternatives including Signifor, the new medication, and bilateral Adrenalectomy (BLA). I want to make sure I explore all my options as the long-term effects can be very difficult depending on my choice. Every procedure carries its own risks and complications and nothing is every 100% sure. After all, people can die from even routine procedures like appendectomies. I know that no choice will be perfect but I want to make sure I make an informed decision and that the doctors realise that I want to be involved in the treatment and management of my own disease. After all, I'm the one who's going to live with the consequences for at least another 40 years (I hope!).

I am grateful that my parents are coming to visit me over Christmas and my mum is even flying over early so she can attend the meeting with me. I think it will help having an extra pair of ears listening to what the doctors say. Sometimes I feel overwhelmed by my emotions....

If we decide to go ahead with surgery (which is looking 80% likely), it will probably happen quite soon after Christmas. Although I'm glad I will be able to start the new year on my road to recovery, it also means that it will upset my studies, AGAIN! I'm starting to get used to it but doesn't make it any less frustrating. To think I'll be nearly 32 by the time I'm fully qualified!? I guess I should take comfort in knowing that I will have been  gaining some work experience (even if it has been mainly part-time) and will definitely have extensive life experience that no college or university can teach. It's a good thing I chose the field of Psychology. Probably one of the few professional areas where age is actually an advantage!

Where do we go from here?

So as I've already mentioned several times, I have a confirmed Cushing's recurrence. However, this time around things aren't as straightforward. You see, although all my blood tests and urine collections are showing increased cortisol, nothing is visible on the MRIs which isn't good. It's not good because if the neurosurgeon cannot see anything on the MRI he doesn't know what his "target" is and although he could just go in and identify the tumour cells visually (apparently they look different to healthy cells), I'm not sure I trust him THAT much...

So this is where I'm at right now: my endo and other doctors will be discussing my case in their multi-disciplinary meeting to decide what the next course of action should be. At that meeting there are several key doctors such as endocrinologists, neurosurgeons and radiotherapists. As I mentioned in a previous posts there are several treatment options for Cushing's disease including neurosurgery, radiotherapy, adrenalectomy and medication. Therefore they will all be discussing what they think is most suitable considering the details of my case. 

Back in London town

It's been over a month since I last posted and a few things have happened since then. Firstly, I flew back to London on the 15th of July to attend my endocrinology appointment on the 17th. But after finding out that I was suffering from recurrence I had pretty much decided that I was moving back to London anyway. Although this was slightly disappointing as I'd hoped to stay in Hong Kong a little longer, I just felt more comfortable being treated in London where they have most of my medical history and more importantly, I speak the language (i.e. English).

Though I was unable to see my usual endo and had to wait for about an hour, the doctor I met with was very friendly, understanding and took the time to listen to me. He also confirmed (again) that he agreed with the diagnosis of Cushing's recurrence. He then went on to inform me that he wanted to act on it fairly quickly for 2 reasons. 1) Medication to treat Cushing's is toxic for your liver and very difficult to dose accurately therefore it is highly discouraged and 2) the neurosurgeon that did my first surgery and is arguably the best neuro in the UK is retiring soon. In fact, he told me he was retiring in 3 months which kinda freaked me out because I knew that I had my trips to France and the US planned and I really didn't want to have to cancel them. Luckily it turns out he isn't retiring until December but I only found that out a couple of days ago so until then I was stressing wondering whether I'd have to cancel my US trip and miss out on my friend's wedding.

So on the health front, the next step is a T3 MRI which is happening at the end of the month and if the tumour still isn't visible then I'll probably have to undergo IPSS which I think I've explained before. Basically it's a test where they thread a catheter up your thigh all the way to your brain so that they can take blood samples along the way and see where your body is excreting the cortisol. Apparently the procedure is as nasty as it sounds because you have to be awake for it! Needless to say, I pray I won't have to go through it...

Apart from the health worries (which have become part and parcel of my life), everything else is going pretty well. I am so proud to have been accepted on a Counselling Psychology course. I was supposed to start in September but which everything going on I think that I will be requesting for a January start instead. I think it's more sensible because I'm likely to have surgery in the next few months and recovery is no joke.

Roller coaster of life

We're always told that life is like a roller coaster, it has its ups and downs. But I don't think I ever realised how high up or how low life could really go until I was diagnosed with Cushing's. In the grand scheme of things I can't really complain as I'm still here, still living and breathing. But to be honest I wouldn't mind having a go on the merry-go-round for a while. The wooden horses only go up and down a little but mostly go round and round in circles. Sure it would get boring, but the slower pace would be nice once in a while.

I guess it just seems like since I've been suffering from Cushing's things go from one extreme to the other! And I'm not just referring to my mood swings...

Just a few days ago I was ecstatic because I found out that I'd not only completed my Masters, but I'd gotten 9 As and only 2 Bs meaning I would be awarded a mark of Distinction. And today, I find out that my Cushing's recurrence has been confirmed. I failed to suppress on both the low dose and high dose dexamethasone tests. It was such a crushing thing to hear. Sure I was somewhat prepared but still... You always hold out hope...

Forget you

Here it is, Friday's Cushie music video. I'd like to say that I will keep making more but I'm not sure I will still have inspiration. But I will definitely try.
In the mean time, please enjoy this one and feel free to SHARE with as many people as you want/can.
It's important to raise awareness for Cushing's whether it be through a humorous way like this or by talking about the more serious side.

Have a great Friday and weekend!

Out of sight, out of mind?

So it's been a week since my last post. Did you miss me? I promised that even thought I wouldn't blog every day I would still keep you updated so here's what's happened in the last week. (Quite a lot actually!)

The appointment on Monday went well. I met a very nice neurosurgeon who took the time to listen to me and seemed pretty knowledgeable. The bad news: the MRI was clear. You might be wondering why that's bad news, well because if the tumour isn't on my pituitary again it means it could be somewhere else which isn't exactly a very pleasant idea. I could have a tumour on my adrenal glands or anywhere else in my body.

But there is a chance of what's called a false negative which basically means that even though the MRI is clear there could still be some tumour tissue left. Even the smallest, trace amount could be enough to cause excess cortisol.

Day 28: Which came first, chicken or egg?

Which came first, chicken or egg?


One of life's philosophical questions is: Which came first, chicken or egg? One of my evolutionary psychology lecturer asked us this question back in year 1 of my BSc and we came to the conclusion that it cannot be answered. After all, it appears one cannot exist without the other.

Day 24: BLA is not a qualification

BLA is not a qualification


In one of my Cushing's groups, a newbie was inquiring about what AI was. One of the group members humourously replied that it could stand for Artificial Insemination, Artificial Intelligence or in the Cushie context, Adrenal Insufficiency. Makes you realise context is everything.

After a quick search on Wikipedia, it turns out BLA could stand for:

• Baluchistan Liberation Army
• Bavarian Liberation Army
• Black Liberation Army
• or Bachelor of Liberal Arts

However, the BLA I'm referring to isn't a qualification or an army for that matter. No, I'm talking about Bilateral Adrenalectomy which is surgery to remove both adrenal glands. As I mentioned in a previous post, there is a chance I may be suffering from recurrence. I have had a few high cortisol levels which may indicate my Cushing's is back. Although this is obviously not great news, it kind of answers some questions as to why I wasn't losing any weight, my fitness level was decreasing even when I tried to exercise more and I was having some mild mood swings.

If I am suffering from recurrence there are a few options for me. Depending on what is causing it this time around I have several treatment options: undergo another transphenoidal surgery (neurosurgery to remove a tumour on the pituitary gland), a Bilateral Adrenalectomy (removing both adrenal glands), Radiation or Chemotherapy. Unfortunately medical therapy is not really a viable option with Cushing's as it does not offer a long term solution.

Over the next few days, I will go through the pros and cons of each option and explain the procedures in a bit more detail. Though these may not be necessary for me in the end as I'm not even sure I really have a recurrence, I think it is a good idea to educate people on treatment options. I hope you will find the information interesting and that it will help you realise how serious Cushing's and its treatment is.

Day 22: But who's keeping score?

But who's keeping score?


One of the suggested topic from the Cushing's website is to write about what we've gone through to try to be cured. I am not going to write about my long journey to a diagnosis again which you can read by clicking HERE if you want, however I will summarise all of the tests and interventions I've had so far (and that I can remember).

2009:

• 2 x "regular" blood draws to check cortisol levels
• 2 x 24hr Urinary Free Cortisol collection (collect all urine being passed for 24hrs)
• Low dose Dexamethasone suppression test (take dexamethasone doses and then have blood drawn at 8am)
• *edit* I forgot to mention that I also had a CT done of my kidneys

2010:

• High dose Dexamethasone suppression test (take dexamethasone doses and have blood drawn every morning at 8am over 2 days)
• 3 x MRIs, two without contrast and one with contrast (meaning having dye injected into the veins)
• 2 x 8am fasting glucose blood tests 
• 8 (maybe more) blood draws to check cortisol and other hormone levels
• Transphenoidal surgery (to remove the tumour)

2011:

• Low dose Dexamethasone suppression test
• 3 x 24hr UFC (urine collection)
• Bone density scan
• 1 blood draw to check baseline hormone levels

2012 (so far):

• 1 x 8am fasting blood glucose and cortisol level check
• 3 x 24hr UFC (urine collection)
• Low dose dexamethasone suppression test
• 1 x MRI

All I can say is WOW!!!! And considering I started testing in September 2009 and we're only in April 2012, I can't even imagine the countless amounts of interventions those who are testing for several years go through. I'd also like to point out that I have not included in this list all of the blood tests I did before when they suspected everything from PCOS to Thyroid issues.

No wonder I hate needles now and when I get to the blood draw clinic, if I see the nurse wearing a TRAINEE badge, I ask to change. Let someone else be a pin cushion for once...

Tomorrow's post: MEDS!

Day 18: TLSC 3

The lighter side of Cushing's 3


Here are some more cartoons that humorously depict having a rare disease:

Guess who's back?

So I have to begin this post by apologising to my friends and family who pointed out that they too read my blog! Sorry guys, it's not that I don't appreciate you, I guess I just underestimated the size of my fan base
So, as promised, here's a snippet of what happened during my trip back to London. I had an appointment with my endo and I shared my concerns with her. She was very understanding and reassuring but suggested we conduct more tests in order to decide whether I could reduce my hydrocortisone replacement dose or not. For those of you who don't remember, hydrocortisone, is the medication I have been taking to replace the cortisol that my body is supposedly not producing as much of, now that I've had my surgery. The reason you take it is because if your body doesn't produce enough cortisol on its own it can be very serious, even deadly.
But if you recall from some of my previous posts, most of my Cushie friends have suggested that I shouldn't be on hydro for this long after surgery and that it might be one of the factors hindering my weight loss.
So anyway, back to the appointment...

The endo suggests several blood tests and tells me that depending on the results we can discuss changing my dosage. So after 2 days of waking up ridiculously early and fasting for the blood tests, I show up on day 3 to do a procedure which involves having blood drawn every 2hrs in order to observe changes. I have to admit, I was NOT looking forward to the procedure but what ensued wasn't particularly pleasant either.
The nurse comes in and tells me that he's received an email from my endo late last night and that she reviewed the results of my blood tests and lo and behold, my cortisol is high!!!
Unfortunately, for me this is pretty bad news as it could signal recurrence.... On the plus side, I don't have to do that hideous blood draining procedure.

The nurse goes on to tell me that the endo has therefore ordered me to complete 3 days of 24hr urine collection and finish it off with a dexamethasone suppression test. FUN TIMES!!!
At this point I'm trying to keep it together and not let my mind go to all these horrible places e.g. "your Cushing's in back!" but it's kinda hard to stay optimistic. So I focus on what the nurse is telling me and try not to get too crazy by reminding myself that cortisol levels fluctuate easily and that blood tests aren't conclusive.
It also helped that I asked the nurse what the exact result was and the number he gave me actually still falls into "normal" range. I guess my endo is concerned because she expected me to be on the low side but I'm convincing myself that this just means my pituitary is functioning normally now and that's good news.

Next episode: Urine collection or, the joys of being a Cushie.

The sound of silence

It's been over a month since I last posted and in fact I failed to post on a fairly significant day (well, significant for me anyway), my 1 year post-op anniversary.
There's a saying: No news means good news, and though that is usually true for me, this time it isn't quite...
Not to say that things have been going particularly badly, but I guess I've been slightly reluctant to post because when I think about what I want to write, I somehow feel like I'm sounding like a broken record. Still haven't lost any weight, still having issues with self-esteem, still having difficulty feeling "normal"...

The journey to Cushing's Syndrome...

This morning I was up at 6am because of serious heartburn, an aching back and an unquenchable thirst! I thought to myself: On no, it's gonna be one of those days again...

But I was wrong!

I turned on the computer, checked my emails, facebook and charity donation page and what I saw put a huge smile on my face! I had received several really encouraging, positive emails and messages and I'd already exceeded my target. Consequently I've raised it however I am SO proud of how generous all my friends and family have been!! But what has really touched me is the positive messages. When I was creating the page and thinking about starting a blog, I was really nervous and unsure about it. Part of me was reluctant to open up and tell everyone my story because to be honest I think part of me is a bit embarrassed. I know I have nothing to be ashamed about because it's not my fault that I have a tumour, but self disclosure is never an easy thing. And let's be honest, the symptoms of Cushing's aren't exactly "attractive"! In fact, this disease has brought on a lot of insecurities for me and destroyed a lot of my self esteem. Being overweight in an image conscious society is never an easy thing, even when you know that it's not entirely your fault! I'm happy to say that I am now finally able to not let it get to me as much, but no one is completely immune to the hurtfulness of disapproving looks... I know that when people look at me, they're probably thinking that I'm just lazy and greedy. To be completely honest, even I used to think that only lazy, overindulgent people gained weight! How wrong I was... Thankfully I'm older and wiser now! So all these positive messages have pushed to me to tackle the big one:

This post is about what has happened in the last 7 years and how I got diagnosed with Cushing's Syndrome!

Appreciate what you have!

Today I finally handed in the report I've been working on for the last 3 months.

I graduated from uni this summer and got myself a freelance job at a charity I had interned with in the past. They hired me to conduct research into families who have a child or children affected by undiagnosed conditions. I basically had to design, administer and analyse a questionnaire, conduct interviews and collate all this data, analyse it and write a report with notes and recommendations. 149 questionnaires, 15 interviews, 17 161 words later, I must admit I'm glad it's done now...

But the reason I wanted to blog about this is because doing this research and speaking to these families really made me appreciate certain things again. My Cushing's ordeal has been very difficult but it hardly compares to the hardship that some families face. Getting a diagnosis is tough to handle, but not getting one? Well that's sometimes worse.