quick update.

things are looking up since my last post. my stomach and body still are acting up, but my attitude has gotten a lot better about it. even though i feel miserable, i try to not let it show and as much as i mocked the theory of "just pretend you're feeling good and not hurting" sometimes it lets me forget about not feeling so good/hurting. there are some good days, and some less-than-good days, but i'm getting through them.

now, i'm just waiting for the endocrinologist appt on the wednesday (!)

Discouraged.

An update with some gory details.


Pretty much since Friday night I've been going downhill. I long for the days where I just didn't go to the bathroom at all. Starting Saturday I've been in and out of the bathroom with stomach cramps and the whole deal. Last night was the worst, every two hours the stomach cramps would wake me up. Finally around 4 or 5am I was able to just solidly sleep. I knew I must have been tired, because I didn't even hear or wake up for Colin going to work. My body hurts, just like all my muscles are so sore. Luckily, no body aches (like the flu) just soreness. I still have some appetite, but knowing what happens after I eat has prevented me from eating much at all.

It's put a pretty big damper on my attitude. I had to cancel plans today. For this last two weeks the main thing that's kept me going is knowing I get to see my family in California for Christmas. I was so excited and counting down the days until we left. And now with everything flarring up it's totally made me dread having to drive down there. Being in the car for ten hours is so hard on my body.

I'm tired of having days ruined. I don't want to sit (rather lay) on the couch another day. I want to be outside, interacting with other people and leading my life like a normal person, rather than planning everything around this.

So today, is not such a good day. In case it didn't come across already to you, I'm feeling pretty depressed and discouraged.

Referral

Well, I called the Portland Diabetes & Endocrinology Center and made an appointment. There's nothing on their website that says anything about Cushing's (Unlike on the OHSU page) but, at least it's a start. Maybe they'll at least have better access to information than my GP.

Referral

I called Dr. S and told her I'd feel more comfortable if an endocrinologist took it from here. Dr. S' assistant called me back today and told me I should call, "portland diabetes and endocrinology center" and gave me the number.

They have a website here, http://www.pdec.org/index.html

Nothing on their website about Cushing's. But, I'll call tomorrow after Colin's surgery (wisdom teeth) to try to make an appointment.

Update.

I got a call back from Dr. S' Medical Assistant, who (not surprisingly) doesn't know what's going on. I know that if I want anything from Dr. S it means making an appointment, and paying another co-pay. I called and left a message for an endocrinologist that is covered under my insurance. No call back yet, but I know they can get sort of swamped. I'll wait till next week and call again. Plus, Colin got the news he needs all 4 wisdom teeth pulled. Our insurance is covering around 80% of it. But it still leaves a big chunk to come out of our empty looking bank account. I hate that most of the time I feel like a giant draining resource to everyone around me. I am grateful to everyone who helps me out, but I hate having to be the person that others have to help out.

Today I thought about how if it's this hard to get answers for someone who has decent insurance, if I stopped having insurance, then what? I guess you just slip through the cracks of America's healthcare system.

There are times like today that I wished my doctor just hadn't said anything. Yes, I am grateful that someone pointed out to me my symptoms align (a little too closely) with a serious disease. But, it's like being blindfolded and handed a puzzle. How are you supposed to put it together if you don't have the right medical knowledge to see what you are looking at?

Paging Dr. MIA

So I finally heard back from the doctor, and by heard back from her I really mean the lab called me and left a message saying I needed to schedule an appointment for my "Cortison Stim Test" Which I am figuring out from googling is a Cortisol Stim test, there isn't much info out there, but I did find this from the WiseGeek page,

A cortisol stimulation test, sometimes known as a synacthen test, is used to investigate the production of the hormone cortisol. Cortisol is normally released by the adrenal glands, located on top of the kidneys, in response to a hormone known as ACTH, which is produced by the pituitary gland in the brain. During a cortisol stimulation test, a synthetic copy of ACTH is given by injection, and cortisol levels in the blood are measured before and after the injection to see if they rise as expected. If low cortisol levels are found after the test, this could indicate a problem with the adrenal glands.

There are short and long versions of the cortisol stimulation test. In the short version, cortisol testing involves having a sample of blood taken from a vein to measure cortisol levels. Next, an injection of synthetic ACTH is given, into a muscle or vein. After waiting for around half an hour, a second blood sample is taken and cortisol levels are measured again to see if the adrenal glands responded normally to the injection. The longer version of the test is similar but, instead of taking just the second blood sample, a whole series of samples are taken to assess cortisol levels and adrenal gland function over 24 hours.

So I guess now she thinks I might have Addison's Disease? That's usually why this test is given from what I gather, which is in fact sort of the opposite of Cushing's.

The NIH page describes it as,
"Adrenal insufficiency is an endocrine—or hormonal—disorder that occurs when the adrenal glands do not produce enough of certain hormones. The adrenal glands are located just above the kidneys. Adrenal insufficiency can be primary or secondary."

The symptoms of adrenal insufficiency usually begin gradually. The most common symptoms are

• chronic, worsening fatigue
• muscle weakness
• loss of appetite
• weight loss

Other symptoms can include

• nausea
• vomiting
• diarrhea
• low blood pressure that falls further when standing, causing dizziness or fainting
• irritability and depression
• a craving for salty foods due to salt loss
• hypoglycemia, or low blood glucose
• headache
• sweating
• in women, irregular or absent menstrual periods

Some of those things are similar to Cushing's, except I definitely DO NOT have the weight loss.  I'm frustrated because I feel like the doctor is all over the place. I don't know what would lead her to think I might have Addison's, and how should I know? She's never bothered to call me back.

More tests.

Dr. S's medical assistant called me to let me know "Dr. S wants to run another test." Which test? She doesn't actually know, she mumbled through "It's a serum based test, and err uhh the lab will call you." When? "Sometime soon."

Blood Results/UFC Result

So, in all of this my doctor has proven to have horrible follow through. I found out she got the results last week, reviewed them earlier this week and never had anyone called. I called three times, the first was ignored, the second I got a massive apology and a promise from the receptionist that Dr S's MA would call me back, and the third time? I got a call back from not my doctor's MA who sort of explained the results, but just seemed confused and told me "She wants to do more work, and ordered some tests. I'm not sure which ones, someone will probably call you."

Defeated, I went by today and picked up the results (Oh, and they forgot one of them, and I had to go back and ask again) Anyhow, here they are:


The cortisol results from the dex-suppresant (take at 11pm, blood draw at 8am) were: 0.6 ug/dL LL (I suppressed, so it's a normal result)

 The 24-hr urine test provided these values:
 U Cotrisol Free 9.8 ug/d
 U Collection Volume: 1550 mls
 U Creatinine mg/24hr 992 mg/d
 U Creatinine mg/dL 64 mg/dL
 U Cotrisol Free raw Data 6.31 ug/L
 U Cortisol ug/gm Cr 9.86 ug/g

All seem mostly normal, but I think because I still had symptoms, and so many of the tests come up with false negatives, more tests were ordered (But, I still don't know which ones) I'm thinking of just skipping to the next step and trying to get in to see an endocrinologist, since my doctor in our appointment showed how unfamiliar she was with Cushing's (Not surprising, it is pretty rare)

But overall? Feeling pretty frustrated and discouraged about the lack of communication, and no real answers.

Irritated.

Finally called the doctor yesterday and stayed on the phone till I talked to an actual person (versus an message machine) They were apologetic and assured me the results would be ready tomorrow and there's a note to call me back on my file.

4pm today. Still no call back.

... And still waiting.

Still waiting... Put a call into my doctor to ask her for a timeframe of when I should get results back. Haven't heard back yet.

Below is some more information on Cortisol, that I found when poking around on the internet today.

Hydrocortisone 

(aka: Cortisone) 

Corticoid hormones balance stress response, energy flow, body temperature, water balance, and other essential processes. Two groups, the glucocorticoids and the mineralocorticoids, chemically control some of the most basic actions necessary to protect, nourish, and maintain the body. The gender-neutral corticoids guide these life-sustaining functions in both males and females.

You can go here to play with a 3D version of it. 

(this link also leads to wear the image& information came from)

Waiting Game.

Not surprising, but I didn't hear from the doctor today, which means no results to next week.

Just more waiting! Which,  I am absolutely horrible at.

Blood Draws.

My blood draw this morning seemed to match my grumpy mood. I woke up and didn't eat/drink anything in case it was a fasting draw (Since no one had told me) I got there, and apparently I was supposed to make an appointment, but no one had arranged one and I was given the impression I could just stop by (wrong) So they shipped me over to the hospital lab. But apparently the way the bloodwork was filed made it really confusing, and they also sent over my 24hrUrine lab order, which confused them even more. I finally explained to them what I needed to get done, this of course after I was told I "had" to pee, which tell that to someone who's already done their morning pee 30 minutes ago and had no liquid since the night before.

Luckily it all got sorted out, for the most part. All I really cared about was getting the Cortisol levels taken. I confronted my fear - that I'm still a really hard stick, my veins apparently don't like cooperating. Finally some on my left arm decided to play nice, and she was able to get it done.

And now, we wait.


(image at top from here)

Dex Suppression Test

33 minutes ago I downed one of these bad boys, Dexamethasone, as a part of my Dexamethasone Suppression Test (aka: Dex Suppression Test) Basically I take the Dex, at 11pm, and wake up bright and early and head over to the lab for an 8am blood draw. This pill is supposed to suppress my Cortisol levels. If they test my blood and the levels are still high, well than we know my body is pumping out way more Cortisol than it should and BINGO I've got Cushing's (most likely anyhow) On the other hand, if it comes back with normal levels, then I don't (Well, probably)



You have to love the mystery and uncertainty medicine still provides! Keeps things exciting I suppose. 

Goodbye Pee Jug!

So I took my final pee in my pee hat today (well, maybe not forever, but at least for a bit here) and poured into the jug and drove it out to the lab. It was weird driving out there with the orange colored jug sitting in my lap. I felt like this jug could hold answers, or leads to more tests. I couldn't decide what I wanted the results to be, if I even really wanted to know. But after talking to enough people, I know that if it is Cushing's I need to get started on it ASAP, because the quicker the diagnosis and treatment, the better.

As we walked into the hospital over to my doctor's office, it was weird placing a jug of urine down on the recpetionists desk. But she seemed okay with it, so I was too. As I walked away I starred at this ugly orange container that was now sitting next to the pharmaceutically-branded Kleenex and said a quick prayer in my head hoping for the best. Whatever, the best may be.

Pee Hat, the hat you don't want to wear.

This is my friend, "The Pee Hat" for my toilet. Since ladies have a hard time peeing in an actual jug, they give you this handy thing to pee in, then you can pour it into the jug.

The jug, which will reside in my fridge (Right next to my Soy Mint Chocolate Milk!)

I laugh and make jokes, because it keeps me from being bummed out or sad. I've emailed back and forth a couple times with another person around my age who was diagnosed with Cushing's. She gave me some really good advice about pushing for surgery once diagnosed & dealing with the financial aspect of being diagnosed a rare disease. It was a lot more uplifting than reading on the Cushing's Boards.

So, STEP 1, Pee in a hat. And we'll see what the results say.

Cushing's

Here's some more information on Cushing's Syndrome, what I'm being tested for over the next week or two from the Mayo Clinic's web page, edited down to make is easier to read:




Cushing's syndrome occurs when your body is exposed to high levels of the hormone cortisol for a long time. The most common cause of Cushing's syndrome, sometimes called hypercortisolism, is the use of oral corticosteroid medication. The condition can also occur when your body makes too much cortisol.

Too much cortisol can produce some of the hallmark signs of Cushing's syndrome — a fatty hump between your shoulders, a rounded face, and pink or purple stretch marks on your skin. Cushing's syndrome can also result in high blood pressure, bone loss and, on occasion, diabetes.

Treatments for Cushing's syndrome can return your body's cortisol production to normal and noticeably improve your symptoms. The earlier treatment begins, the better your chances for recovery.

Common signs and symptoms involve progressive obesity and skin changes, such as:

• Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump)
• Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
• Thinning, fragile skin that bruises easily
• Slow healing of cuts, insect bites and infections
• Acne
• (for women) Irregular or absent menstrual periods   

Other signs:

• Fatigue
• Muscle weakness
• Depression, anxiety and irritability
• Loss of emotional control
• Cognitive difficulties
• New or worsened high blood pressure
• Glucose intolerance that may lead to diabetes
• Headache
• Bone loss, leading to fractures over time

Luckily for me I don't have any of the more complicated symptoms as compared to some of the people on the Cushing's board (Vision loss, reoccurring fractures, high blood pressure or diabetes) My "hump" on my back isn't that bad, but it does seem to be there, it wasn't noticeable as much to me or Colin, but when I posted it on the Cushing's board they pointed out where it was, and then it became apparent. I guess I was expecting to see something similar to a camel's hump, but apparently it's not quite that bad :)

Relection & new testing.

I can't believe I actually posted a picture of my current self on the internet that wasn't from far away or some angle that made me look about 40 pounds lighter. But I'm tired of hiding. I'm sick, I don't feel good and it doesn't have to be a secret. It's hard to believe that the picture on the left was on a hike I took because I felt like I had started to gain weight. Little did I know that five years later I'd be that picture on the right. I am ashamed. I feel like I am a failure. Yes, it may sound vain. But it's true. I never felt the need to be a size 2, but I did always want to look like I took pride in my appearance. I wanted to look and feel happy. Now I feel like I look bloated and uncomfortable all the time. Which makes sense, since I am.

I admit, I had just sort of given up. The last two years were so trying that it was too hard to fight and to keep going to doctors and having them sigh at me. The weight gain didn't help. Instead of just telling me, "you have IBS, you need to stress less." Now I also get, "You have IBS, you need to stress less, and diet & exercise." No, I am not a saint when it comes to perfect eating, but I'm not downing a Big Mac for all my meals or something. Not enough to warrant a fifty to sixty pound weight gain.

So this all came to the surface again on a doctor's visit last week. Dr. S, was a new doctor that I had decided I need to see to try to get my periods regulated. I only have one to two periods a year, and I knew it was funky. I also knew, that sometime in the next two to three years I'd like to possibly have a little Colin/Allison running around, so I better get started looking into it now. She did a full physical and asked me a myriad of questions, and then put on a concerned face and said, "Allison, have you ever been tested for Cushing's?" I was somewhat familiar with it, from back in the early days of feeling sick and doing an intense amount of internet reading. And thus, the journey to figure out what was wrong was reopened.

So next week, I have two new tests I have to do:
24-hour urinary free cortisol level. In this test, a person’s urine is collected several times over a 24-hour period and tested for cortisol. Levels higher than 50 to 100 micrograms a day for an adult suggest Cushing’s syndrome. The normal upper limit varies in different laboratories, depending on which measurement technique is used.
Low-dose overnight method -- you will get 1 mg of dexamethasone at 11 p.m., and a health care provider will draw your blood at 8 a.m. for a cortisol measurement (ie: more blood work)

I am more than a little nervous. The symptoms lined up eerily close when I looked into it. I am also terrified because the #1 treatment seems to be surgery. Me, the kid who has successfully avoided getting her wisdom teeth out for ten years because she is afraid of going under!  Also intimidating is that although surgery works for a fair number of people, it's a long slow battle. The reoccurance of a tumor is unsettingly high.

I went on some forums and everyone talks about hearing the symptoms and feeling like it's them. It's also scary because so many of them got false negatives, they write about insisting to retest, and they eventually do get diagnosed. How do you know how pushy to be? I hate being pushy with doctors, I feel like the crazy patient. But I guess all of this just depends on the results next week.

Bloodwork

Bloodwork

6/2/2005
Just did a basic panel
Flagged Results
BUN 6 [Ref Range 8-20]
BUN/CREAT RATIO 8.57 [12.00-20.00]
Globulin 3.6 [1.9-3.5]
Eosophil 0.5 [0.0-0.4]

5/15/2007
Normal Results
Estradiol Serum -HCCL 57.8 PG/ML
FSH (WHC) 6.2 MIU/L
Luteinizing Hormone (WHC) 10.0 mIU/ML
Ultra Sensitive TSH 1.23 uIU/L (Reference range .40-4.20)
Free T4 0.73 (Reference range 0.61-1.4-5)
Flagged Results:
Eosinophil 7 (Range 0-5)

1/9/2008
flagged
DHEA Serum (ARUP) Result: 14.3 ng/mL (Reference Range: 1.9-7.6)  
Eosinophil 9 (Range 0-5)
Normal Results
      - Luteinizing Hormone (WHC) was 12.1 mIU/ML 
      - Ultra Sensitive TSH 1.14 uIU/L (Reference Range: .40-4.20)

tracking

It seems since most of my life revolves around technology for tracking stuff, it only makes sense to track my health stuff on here too.

Symptoms:
Irregular period (1-2 a year)
Rapid weight gain (~2007, over next two years 50-60lb, mostly central weight gain)
Fatigue/Easily exhausted
Difficulty falling asleep (on going)
Difficulty Concentrating (2006)
Difficulty remember simple stuff (direction, tasks etc) (2006/2007)
Anxiety & Depression (Dx: Panic Disorder/agoraphobia 2002)
IBS-C (Dx: 2004)
Dairy Intolerance (2007)
Stretchmarks abdominal/hips (2009)
Back pain (long term)
Rib-to-hip pain (2006)
Hip pain (2007)
Bottom of tailbone pain/sensitivity (2010)