Monday, August 25, 2008


I don't see how they think that hormones "enhance" Cushing's levels, because it seems the opposite for me.

I am back to how I felt before I ever knew "Cushing's Disease".

Eight days without estradiol, testosterone and both thyroid meds and I am on a Cushing's high from h-e-double-l. Yikes!

I'm greasy, acne'd, can't sleep, super energy at night, OCD, heartburn from hell, weight fluctuating up to 10 pounds in a single day, sprouting hair everywhere (TMI)... fah-reak! Good grief.

The only up side to all of this is that I have some energy from the high. I've de-cluttered the entire house, ordered a dumpster, filled it, and did all of the laundry in the past three days. Any single one of those things would have been impossible for me 9 days ago. Good heavens.


Three more weeks without hormones before they hospitalize and do 48 hours of tests. Threeee weeeeeks. It seems like forever from now. Time used to pass by in a flash. Not so much right now. Like when you were a kid and the days seemed to be a lifetime and there was no way that Christmas would ever get here.

Thursday, August 14, 2008

Here we go again

I'm still crying from my appointment this morning. A new specialist on my new insurance.

I think I hate 99% of these specialists. Maybe it is just Cushing's specialists that act like this? Each one of them thinks that they have the proper testing protocol and anything but what they do - exactly as they do it - doesn't count. So, all of my sky high results from the tests I did in April? In the trash.

I've been through this before. And to some extent I understand it. But I am very fragile right now, and I could do without the drama and starting from scratch.

Let me give you an example of what I am saying:

Dr. X in OopaLoopaVille believes that midnight serum blood draws are the "it" thing for diagnosis. But he also thinks that they have to be done with central line placed, an IV line threaded to your heart. He doesn't care how many highs test results you have from going to the ER for midnight blood draws, they don't count to him and those results go right into the trash. Now mind you, I'd have to drive to the hospital for them to draw my midnight blood labs - but out of the central line IV.

Dr. Y in Rainbow City thinks that this central line stuff is a bunch of hooey, and exposes immune-system-compromised people to infection and is just a bunch of crap. He wants to you to go to your local ER at midnight and get your blood drawn with a needle stick. He doesn't think that being stuck with a needle affects your cortisol levels to the extent that you would get a false positive.

NOW TODAY, the Dr. Z of Smitzville says all of the sky high lab results I worked so hard to get, from April, are crap. Throw them in the trash. He thinks that driving to the ER at night throws off your levels and that none of those results are worth the paper they are written on. He also thinks that you cannot take any hormones of any sort while you are testing, because it'll give you false positive results. So, to test with him I need to stop taking thyroid, DHEA, testosterone and estrogen - and I am already not taking the growth hormone. I have to be off all of those for ONE MONTH then he'll admit me to the hospital to run tests. No mention of whether it'll be a central IV line (to the heart), a regular IV line, or just regular blood draws.

Are we slicing some mighty fine hairs here? And does everyone on hormone replacement have some sort of pseudo-cushing's disease?

What I have found consistently over the years is that 99% of these specialists are SO FREAKING COMPETITIVE that they just rejoice at the chance to trash the others' methods.

I hate it, I hate it, I hate it.

Oh, and he DID NOT tell me that 2 pit surgeries were a mistake for me to have done. Has he ever had a three year headache and double vision??? Even if it didn't kill the source, I especially NEEDED that first surgery. The second surgery, well - the tumors showed right on the scan, all of the evidence was in, it seemed like the right thing to do to all parties involved. Mistake? Probably not. I've regained ACTH and have not lost any additional anterior hormones.

I'm so emotionally fragile when it comes to being tossed around and torn down over these minute differences in testing protocol. I broke down and cried like a baby.

I'M SICK. Dammit. Fix me.

I'm going to play along with the rules du jour. I'm marking the calendar for the 1 month free of hormones and we'll go from there.

Mark my words, not only did I have the tumors that have been removed from my pituitary - but my adrenals have their own issues. I've been showing symptoms of Cushing's Disease since the age of TWO. Who grows a pituitary tumor at TWO YEARS OLD, yet not grow to massive proportions by age 36?

I have a friend with two daughters having a form of Carney Complex/Cushing's Disease; it is called iMAD. Both had diseased adrenal glands with pigmentation. The older daughter also has a pituitary tumor. Her doctor is saying that the pituitary tumor doesn't mean anything.

On my side of the equation, I have symptoms of Primary Pigmented Nodular Adrenal Disease. But I had a pituitary tumor, so the PPNAD symptoms don't mean anything.

It's a crazy, freaky world let me tell you.

I am sooo tempted to bypass all of the "cover my ass so I won't get sued" CRAP I have to go through to prove again, and again, and again, and again that I HAVE CUSHING'S DISEASE. Do you think I could pay cash in India or Mexico to have my adrenals out? It'd be worth it at this point. I am so done with this guinea pig stuff.


What other disease in the world makes you go through SO MUCH for a cure? I can't think of one. Can you imagine if diabetes was diagnosed the same way?

"It only counts if you eat two apples, standing on your head, then test glucose levels with a finger stick of your left pinky finger."

"No, no, no! You need to not eat any apples for a month, then lay upside down with a fork in your neck and test glucose levels at 1:23pm global-adjusted time."

"Oh, you have it ALL WRONG. Eat thirty pounds of angel food cake, three diet cokes then go to the lab at 8am. They'll jab you with a 10 gauge needle in your RIGHT pinky finger. At a 20 degree angle."

Repeat the above over and over, until all of your toes fall off from gangrene and the new dialysis clinic can fit you in.

Friday, August 08, 2008

Veteran Patient Gripes

A long, long time ago I used to date a doctor. Now, I know that he has this blog address and so does my husband, who are not one and the same, so I won't divulge more info than that. It was the first shocking revelation when he admitted to me that he sometimes dreaded seeing his patients. The second shocking revelation was that one time he met an 80 year old patient with perfect (and preserved?) breasts. None of those tidbits made me think any less of him, but they intrigued me.

Before then, I hadn't thought one way or another about how doctors feel about their patients, or that they would notice something about them other than being a patient. Of course, that was very naive.

During my second pregnancy I knew something was quite not right with me. During my extended tour of bedrest I searched for answers. I hadn't found blogs yet, but discovered an old listserv archive with many writings from a doctor formatted in a Q&A style.

At some point during my long and ongoing illness it occurred to me that it might be a fault of my own for not getting answers for my ailment. Maybe I wasn't communicating properly? In the end, I found medical blogs and plenty of information on how NOT to approach doctors. It was eye-opening. I quickly learned that nurses, doctors and even pharmacists are greatly annoyed with their clients. Some of the posts were vicious and full of hatred, even. I made it my priority to see things from their side of the equation, with the hopes of better rapport & problem-solving my illness with my doctors and their staff.

But I haven't really seen a patient's perspective laid out bare. As a frequent-flyer in the medical community I have lots to share. :)

~ Impromptu GYN exams are not a welcome surprise. During a visit to a new 'specialist' a discussion of my odd pigmentation came up. I have weird pigment spots all over my body, mostly concentrated to my lips, eyelids, ears and a whole rash of them around my genital area. It never crossed my mind that I'd be asked to drop my pants and show them on the spot. Uh, traumatized? Table for one! YIKES.

~ Either you want me to be smart, or you don't. I always have problems talking to doctors. My mind goes so fast sometimes that I can't put my thoughts together. Intelligence of the rambling sort doesn't mean I am dumb or that I am trying to be annoying. I have resorted to writing a checklist to refer to during our visit. I'm also afraid of annoying you with my lists. Sorry.

~ Know when you are out of your realm. One time I got into a stand-up, fists clenched argument with an "Endocrinologist" that didn't understand the nuances of secondary hypothyroididm. "Those ranges are there for a reason! That's why we use them!", said he as he angrily poked his finger at the lab results sheet. Uh, said I; "Those ranges are there for reference on the common form of the disease hypothyroidism. Central Hypothyroidism requires careful interpretation of the entire set of results. Hormones work on a feedback system and are influenced by one another as they are a feedback system, not just standalone entities. If you exam them carefully it'll show you the source of the deficiency. Do you want to interpret the nuances of a complex hormonal system, or just be an accountant? Because then maybe Diabetes might be your forte." {He was fired, from me. Gladly I'm sure :)~]

~ I have small children at home, so if they aren't with me I don't mind waiting when you are late seeing patients because no one is screaming or climbing on me. No apologies necessary. And I don't even need a magazine, the quiet white room with the reclined exam bed will do just fine for some r&r. I have the baby sitter a few more hours, do you want to skip me and catch up on some other patients first? :)

~ I don't want to tell you what pain meds I have taken in the past. I know that Fentanyl, Fioricet and Percocet et al raise your eyebrows. Personally, I enjoy being able to poop. Trust that I won't ask for narcotics unless I really do need them.

~ As a chronic patient, I know that my history is long and confusing. I prefer you ask me what those weird meds are that I take, because I might not be taking them for what you think they are for. Cytomel is an odd little thyroid drug and not prescribed often, Ketoconazole is an anti-fungal but also shuts down your adrenal system, DHEA replacement is sometimes necessary when your adrenals don't work right. The Topamax I used to take for migraines and seizures, but if I could stand the tingling fingers and being dumb as a rock, I'd hop back onto it so I can fit into a smaller size. The effortless weightloss was awesome.

I have so many symptoms and so many meds, heck it is hard to know what symptoms are even relevant. I'm not playing games and hiding any of them, I swear. Lead me with some questions if you suspect something. I have symptoms that don't even register with me, kinda like how I keep forgetting to have those cataracts checked ~ time flies when you are sick ~ or why I haven't followed up on my high urinary protein levels. I have bigger fish to fry while I try to stamp out the source of my excessive cortisol production. If I don't keep on track and get the underlying source fixed, we can both sit back and be amazed at how much more can go terribly wrong.

~ Don't prescribe Effexor unless you have to. Just throw those damn 'free' samples away because it is impossible to get off of that stuff, Which is somewhat of the point from Wyeth's marketing point of view. Yes, I take Effexor but only because I can't stop taking the damn stuff and weaning is a joke when you have two small kids and an absent husband... unless you like walking around with waves of electric shocks in your head and feeling the whole room spin when you barely move your eyes. Consider the long-term impact, people. Can I go to rehab for Effexor? Because I might need to. That panicky feeling they were medicating was resolved on proper thyroid medication. *rolleyes* All I can say is while I am stuck on 150mg XR is that I am really, really not depressed. ;) Just apathetic, which is not the same thing.

~ I managed to gain 75 pounds in one year. Giving me advice on exercise isn't going to help. My body is hurting and tired for a reason. My feet hurt to the point of tears, all of my joints hurt sporadically & spontaneously and I fight like crazy to stay awake between the hours of 11am and 2pm. My body is desperately trying to get someone to listen, or at least force me off my feet to rest. No one in their right mind can gain 75 pounds in a YEAR. I can't imagine what I'd have to eat to pull that off, like DUDE, on purpose. I feel tired and weak because I am. My husband broke my sternum just giving me a hug for heaven's sakes. Two days ago I stood up from the couch and broke a rib. *faint* I wonder what a trip to the gym could really do for me.

~ Don't like the health insurance system? Then break out on your own and go back to being a physician.

That is what my favorite doctor does. I pay him, he gives me a 'superbill' to submit to my insurance company. I am fine with that. I don't want $10 co-pay visits. I want results with someone that focuses on their practice and not the billing. I'd like to communicate follow-ups via email. It's no problem for us, as it is included in his initial fee - and if we need more followup emails, I'm happy to pay to further our discussion to make a plan of action. That's what I need.

Maybe adopting this type of service, upfront, and patient self-reimbursement would lighten up the moods out there, because it seems to me that doctoring isn't as happy and gratifying as it used to be. That makes me sad. Not that my thoughts matter on the whole, but because I know that you went to school, med school and survived residency and deserve to do what you do well without a heap of crap piled on it.

Tuesday, August 05, 2008

The Usual Dilemna

Ow, ow, ow.

I went to stand up from the couch tonight and something happened. A huge heart-dropping *CRUNCH* in my back. Sounded like a few upper vertebra.

It hurts, more chest pressure/pain from coming around from the back area. *shrug* Do I have it looked at? And by whom? And how long can this go?

The longer you are exposed to high levels of steroids the more likely you can break ribs & vertebra by normal movement. A few years ago my husband broke my sternum by giving me a hug. >:o By the looks of the stretchmarks ripping up my underarms and breasts lately, I'm hypercortisol'ing. I hope I am wrong.

I wonder if Scalpy or GruntDoc are working tonight? LOL I'd be a favorite pt to see, for sure. ;)

*edited to add*

Yup, it's a broken riblet ~ right next to the spine. Niiiiice. And a UTI to add insult to inury. I do love my local Urgent Care docs, they always take good care of me :)