A Diamond in the Coal

By Jove, I GOT IT! Lo-and-behold, I now know the drug and the dosage for the cure*. The bitterness of my situation led me through a tear through the Internet. I scoured medical papers. I checked the cross-links and every little trail I could find. I enhanced the specifics of my web search, and I found not one, but TWO papers that corroborate each other and agree on the dosage! Who needs a neuroendocrinologist now? Not this gal!!! Nor do my Unicorn Sisters!

According to the two different papers out there, the dosage is 100mg azathioprine once a day (150mg was not tolerated in any case, leading to some dangerous complications*). Treatment can last up to 6 months, but it can require as little as 4 weeks in some cases. Other medications (prednisone/levothyroxine/etc.) are continued until no longer necessary. (Azathioprine as an alternative treatment in primary hypophysitis and Lymphocytic Hypophysitis: Differential Diagnosis and Effects of High-Dose Pulse Steroids, Followed by Azathioprine, on the Pituitary Mass and Endocrine Abnormalities — Report of a Case and Literature Review) [*"two-fold elevation of alanin and aspartate aminotransferase, five-fold gamma- glutamyl transferase and transient leucopenia 10 days after therapy initiation, that subsided with dose reduction to 100 mg qd."]

Now to convince one of my local doctors to allow me to try this, since I'm bringing the information to them, and it's not on the suggestion of a doctor, that may increase their liability by... a lot. I honestly don't know. It may not be a big deal at all. We'll see.

But for me and my Unicorn Sisters, this day couldn't have ended better.

*Note: I say cure, but there's no guarantee. There never is in medicine. However, the statistics look *good*... 86% show improvement, and more than 40% go into complete remission.

This article is in response to Stocking Full of Coal

[Update 12/14/12]
I called my old Neuroendocrinologists office (as she has already left practice) and was able to talk to the prescribing nurse (who is filling prescriptions until the end of the year). I told her about my situation, was able to giver her the names of the two papers, the dosage, and put in a request for a recommendation letter to be sent to my GP about how to carry out treatment. I was told to expect a call soon!

So it may be that I was able to get this all in right under the deadline. Whew! I do not like close calls like that!! But I do feel better knowing that this can proceed forward again...

Stocking Full of Coal

Many of you know, I suffer from a rare pituitary disease, for which there are less than 500 people with the disease. This is why I call myself a Medical Unicorn. When I got the diagnosis, I figured that my disease was so rare, there was no possibility that there would be a cure. There just aren't enough of us for it to make a difference to even try to find a cure. There's certainly no money in it. But then, it happened! They stumbled upon a cure, in the process of trying to fix something else in a patient. I've been trying for the last year and a half to get that cure.

My chase for the cure started with me moving to the Denver area. Doctors who study the pituitary gland are called neuroendocrinologists, and there aren't many of them in the country. There was one when I lived in Seattle, and they were the ones who originally confirmed my diagnosis. But Seattle is way too expensive a town to live in, and after my ex-husband suddenly cut off my court-ordered spousal support, I had to move back home to St. Louis. However, I quickly discovered there wasn't a neuroendocrinologist for a 5-state area. I was shocked. I was sure there would be one at Washington University, but no. So after exhausting everything I could do in St. Louis, and with the help of mt father, I moved.

It was a struggle getting an appointment with the neuroendocrinologist in Denver. At first they told me they wouldn't let me in because the University Hospital, with which she was affiliated, wasn't taking any more Medicare patients. I had my old neuroendocrinologist in Seattle fax over my MRI that showed the inflammation of my pituitary gland. That got me in.

But then, the neuroendocrinologist here took one look at me and decided that all my doctors of the past 10 years were quacks, that they had misdiagnosed me, and that all I needed to do was to come off my medication and I would be fine. She said that my thyroid problem was caused by another autoimmune disease, and it would show up on her tests. Well, it didn't. All my test came back proving her wrong. But did she change her stance? No. She still insisted I could come off all my meds and would be fine. She never said what was causing my thyroid to not work, since I came back negative on all other autoimmune disorders.

I tried switching to another neuroendocrinologist, a resident in training. However, since their scores are dependent on the exact person who dismissed me... Yeah, I didn't get any further except to keep having them spin their lies at me. At one point, I got the resident to break down and admit that they weren't going to do anything for me. I was devastated. I had the disease, I had the cure, but I couldn't get access to it.

Then, a miracle occurred. I couldn't have wished for better. My endocrinologist, the woman who had diagnosed me, and had send me to the neuroendocrinologists, was herself promoted to that very same position!! Gods be praised, I was overjoyed. I wouldn't have to prove anything to her, she was there! She was there when my disease went into remission, and I was able to come off all my meds, and she was there when it came back. It was a homecoming.

I couldn't afford the trip on my own. So I held a fundraiser, and my friends and family came out in support. I was able to make the trip to Seattle and reconnect with my old doctor. She hadn't heard of the cure, but she was able to look up who was involved in the study, to try and get the correct dosage and protocol I would need to go through to cure me. We waited for an answer.

And waited.

And waited.

I called her office today to see if we'd had any luck. Only when I get the pre-recorded greeting, it tells me that my doctor is no longer in practice!! I got no letter, no warning. Nothing. Like a stocking full of coal on Christmas morning, I'm beyond grief. I have no idea where to turn now. I can't afford another trip to Seattle. Her replacement will be a stranger who also may not believe me. Doctors don't believe in medical unicorns.

There's a cure, and I* can't get it.

She left her practice, and didn't tell me.

Who do I turn to now? Where do I go? What do I do?

How do I get what I need?

F.M.L.



[Edited to add:]
* I should actually say WE can't get to the cure. I know of two others (Hi Jana & Cathrine!) who share my disease and who's doctors are looking to me and my results before trying it on their patients. I'm leading a charge here, and I feel like the wind has been knocked out of our sails.

Please, if you have any insights... share them. Pass the word along. THIS CANNOT END HERE!!

[Edited to update:]
Never mind!! I found A Diamond in the Coal!!!

Happy Birthday, Make This Look Awesome!

Happy birthday to my blog! It's been one year since I've started blogging, and what a year! I started this blog as a woman hopelessly lost, and looking for answers. I was in chronic pain: an aching, burning, and hyper-awareness of sensation in my hands and feet kept me crippled and miserable. I hadn't exercised in ten years. There was no cure for what I was going through, and no one seemed to be able to help me. So I decided to turn things around, and teach other people how to go through my situation. I asked myself, "If I had to help someone like me, what would I say?" And I started writing...

Since then, it's been miracle after miracle. I thought I was alone, which was a reasonable thing to believe. There are only around 350 of us with this disease. How difficult was it going to be to find another person my age with this disease? Someone who I could talk to and compare notes with... There are over 900 million active users on Facebook. That's like looking for a needle in a haystack of needles! And then I found my Unicorn Sister... a woman my age, with all the same symptoms, down to the elusive pain that was being dismissed by all our doctors. I was no longer alone, and when I wrote my blog entries struggling with my life, she would write me little notes, like, "I feel like you're inside my head, writing just for me." Oh, how that warmed my heart and made everything awful I had been going through worthwhile!!

I also had several things happen, which I though I would never see in my lifetime. A CURE!!! My disease is rare. There aren't fancy ribbons or marathon walks for Autoimmune Hypophysitis. Most of my doctors had never even heard of it until I walked in their door. People with diseases like mine don't get big, fancy, superstars like Venus Williams (Sjogren's Syndrome) or Lady Gaga (Lupus) to speak for them. We don't have collection jars next to the cash register. No one cares! Why should they? Cure cancer, and that would affect millions. Cure Autoimmune Hypophysitis, and that's maybe 400 people. I thought I would die of this disease. I thought it would be the eventual cause of my death. And then there was a cure: Two small observation reports (because there are even too few patients to have a study) showed that a combination of azathioprine and advanced steroids for 16 weeks, eliminated all traces of my autoimmune disease.

I was having trouble with doctors back then. First, I couldn't get an appointment to see the specialist I needed. Then, after seeing the local specialist, I ran into a lot of trouble. She didn't believe I had my disease, and thought that if I were to come off my medication, I would be fine. I had further problems where the tests that were supposed to be ordered, never were. But even after tests were completed and showed abnormal results, she still refused to believe I should be on any medication. I thought I had reached a dead-end. I tried going to another doctor at the same clinic, but she was a fellow, and this other doctor was a teacher, so not much happened there but more friendly stonewalling.

But then, my old endocrinologist---the one who had seen me during my original diagnosis---she got promoted to head of neuroendocrinology at Swedish Hospital in Seattle. As I told my roommate, "I couldn't have wished for better!" I knew I had to get back to Seattle, and I had no idea how I was going to afford it, but then all my followers pitched in, and I was able to go. I was able to meet with my old doctor and establish myself as a patient of hers again. She hadn't heard of the cure, but she's in the process of researching how to go about doing it, right now! She found one of the authors at Stanford, and she's waiting to hear back from him.

In the meantime, Dr. Broyles reminded me that I had an old MRI in my file, that if the neuroendocrinologist had just bothered to look at it, she would have seen my pituitary inflamed, and I possibly wouldn't have had to go through all that trouble of trying to prove I-had-what-I-said-I-had. I'm still working with Hospital Administration at CU on that one. I'm also working with hospital administration at a different hospital, for missing two 7mm kidney stones, and misdiagnosing me with PMS. Whoops. That was a huge ordeal that I'm still trying to manage (I need to get me a better way to tip upside-down). I'm also waiting to hear back from the Stone Center of the Rocky Mountains to see what sort of diet changes I can do, to prevent them reforming in the future.

Finally, and certainly not least, I got pain control!!! This was another big one that I thought would never happen in my lifetime. For one, narcotic pain killers just aren't that good at killing my pain. They work wonderfully on some things. But for the daily pain I was experiencing, they were terrible. I could get overwhelmed by the wooziness of the narcotics, and still be feeling that impossible burning in my hands and feet. Narcotics didn't so much take care of the pain, as they did not make me care about the pain. So, even if my doctors were willing to give me narcotic pain control, I knew it would always be incomplete. I knew it would always hover there in the back of my consciousness, no matter how blotto I got. I had hope of maybe finding a sweet spot where the pain wouldn't cripple me and the medication wouldn't either, but that meant getting approved for long-term narcotic care. Not something easily given in this day and age.

My GP started me up on Neurontin again: last time I had used it for the migraines, and it had stopped working altogether. This time it was for the nerve pain, and it seemed to help some. But I did have the scary experience of my first seizure, when I made the mistake of trying to ramp down too quickly. That, along with another medication, kept me going enough so that I could keep going to doctors. I went to a neurologist, who was finally able to diagnose my pain as small fiber neuropathy. That diagnosis, along with steps I took myself (willing to do physical therapy), finally got someone to take my pain seriously. The first pain clinic I went to was not able to treat me, but I was able to find another clinic, and there I ran into the wonders of methadone. It was like someone attached a light switch to my pain, and simply turned it off. Nothing short of a miracle.

Throughout this all, I have been involved with counseling to help me with my Medical PTSD. I'm terrified of doctors, because I've had some very bad things happen to me at the hands of doctors. The greatest of which was a MRSA infection, which almost killed me in 2008. Through counseling, medication (#headmeds), and progressive success with my doctors ("progress, not perfection..."), I was able to really bring my anxiety under control. Oh, I still have my moments... but I know that they are moments that will pass. Even though my body is not a safe place to be, I can still manage it well enough that I know I can make it through. Though I may experience catastrophic moments, (like an adrenal crisis while camping), I've got the skills and support where I know I'll survive. Yes, I am going through life experiences that are terrifying. It's reasonable for me to lose it every once in a while. So long as I don't lose it on anyone else, that's okay. I can be calm in my doctors appointments, explain myself so that I'm heard, and get the treatment I need. If I run into a doctor that refuses to treat, it's not the end of the world. I can start over with a new doctor, and eventually find someone who can help me get better.

I didn't entirely believe that I could get better at first, but I carried that belief with me, until it came true. I was hoping for enough pain control, and I got even better. I was hoping for management of my autoimmune problem, instead a got a cure. I was hoping to deal with the loneliness my disease, instead I got a sister to share with. I thought I would struggle to return to work, and then I found I'd already started my life's work, right here.

Ya know... I think I might just stick with this blogging thing. It just might be good for me! ;^D

Thank you for joining me in my incredible year.

#HAWMC - Writer's choice! - Seattle trip update

I met with my new/old neuroendocrinologist, Dr. Broyles, yesterday in her downtown office. New, because I'm establishing care with her as a new patient. Old, because I was her patient from 2005 to 2008. It was wonderful. She even reminded me that one of my MRIs had shown inflammation in my pituitary stalk, and that this was further evidence of my diagnosis of Autoimmune Hypophysitis (lymphocytic hypophysitis). She hadn't heard of the studies about the cure that I was talking about, but she was excited and was going to read up on it. She also had a drug she was working with, that they don't even have studies out for yet! This trip was well worth it!

She took one look at my results from Colorado University, and was appalled: "And they tried to tell you this was a normal response?" She even had a follow up question: "Do you know what the strength of the injection was? Were they using..." and then it turned into scientific jargon I don't remember. But Colorado University didn't even mention there were two possible injection types. You'd think if they wanted to prove all my previous doctors were quacks, they'd at least cover their behinds. I'm going to have a long conversation with their hospital administration when I get home.

So the plan is, she's going to look over the studies, pull up all my old information (some of which is in archive) and give my case a good, thorough looking-at. She's going to contact the folks who ran the studies to see what levels of the medications they used, and see if it's a protocol we want to try. We both know that the protocol is really risky---we'd basically be pushing my immune system as close to off as we can get it for 16 weeks. That's a big deal. It will be like when cancer patients can't be around anyone so they don't catch accidently catch a cold and die. I will have to be super, super careful. And high-dose steroids means around 100mg/day. YUCK! I will be starving all the time, my skin will hate me, and oh, my poor emotions! It will be hell.

But if the studies hold out... if this shows that it really can reset my body and eliminate all traces of the disease... Sixteen weeks is nothing. It takes forty weeks to make a baby. I will do what needs to be done. She took a bit of blood to see where my renin levels are at, check my thyroid and other basic things. Things move forward from here.

Oh! So exciting!!!



[Other posts on my Seattle Trip]

[The back-story in chronological order:]
Trying to get an appointment in Denver
My discovery of the paper on the possible cure
Got an appointment!
CU Neuroendocrinologist not looking so good
Looking worse now...
And still worse...
But wait? A glimmer of hope?
Nope... no such luck...
Maybe if I switch doctors in-house? No....

We are at 100% Awesome!!!!!

Thank you to everyone who donated!!! My trip to Seattle is ON!!!!!!!!!!!!!!!!!!!!!!!!!!

Donate for my trip to Seattle

As you may recall, my old endocrinologist has been promoted to head of neuroendocrinology in Seattle. She was the one who saw my disease go into remission and then reappear. There would be no need for me to prove anything to her; she was there. And now she's in a position where she could possible get me the cure for my autoimmune hypophysitis. The only thing standing in my way right now is affording the plane ticket. I was going to rely on my family for this, but the funds just aren't there. So I'm hoping, in a fishes and loaves sort of way, that if I get a little bit from everyone, it won't put anyone in too much of a hardship to help.

I'm trying to raise $449 for the plane ticket and rental car. I have friends I can room with, but transportation is not guaranteed. Many of the folks I know rely on public transport, and I am not healthy enough to do that myself, sadly. I can take care of food as I would have needed to eat that week anyway! ;)

I'm only asking for what I need. I will update the amount I necessary for the trip as donations roll in. When I hit my target goal (100% Awesome), I will remove my donate button.

[BUTTON REMOVED]
[March 3, 2012]

This is a huge chance to change my life. This is the disease that has the potential to kill me. And I would be paving the way for my unicorn-sister and her treatment as well. Any amount is welcomed. Thank you so much!!!

[Edited to add]
My appointment is April 6th. I'm flying out April 4th and returning April 11th for the cheapest flights.

Prices have changed for the better!! My roommate was able to find me a better deal online for car & airfare, so now I'm only looking for $449!

I couldn't have wished for better...

"I couldn't have wished for better!!" I told my roommate in shocked disbelief. "This kind of good luck just doesn't happen to me." I have an appointment on April 6th with my old endocrinologist in Seattle. She was just promoted to the head of neuroendocrinology at one of the hospitals where I used to be a patient. Talk about hitting the lottery! This is the woman who saw my disease go into remission. She was the one who worked for a year to get me to see an neuroendocrinologist in the first place. And now she's the head of the department?! Thank you for your prayers and well wishing, as they obviously have worked.

This blows my mind. When I say I couldn't have wished for this, I mean I really couldn't... not and still like myself in the morning. To make this happen, I would have had to find a way to make someone lose their job, just to put her in their place. I simply wouldn't do such a thing. I wouldn't even be able to pray for such a thing. But it's happened of its own accord anyway, and I am the lucky benefactor. Holy cow...

It's going to be seeing an old friend. I bet she's going to be so proud of all the weight I've lost. She never knew me skinny. She only had the pictures to go on. We even tried to get the weight off with phentermine, an ingredient in the now infamous phen-phen, but it stubbornly stayed. I bet it will be good for her to learn it was the prednisone dose I was on at the time. Oh, and I'll be able to got T3 replacement again because she's up-to-date on information like that. I'm absolutely giddy with excitement.

This is such a relief after dealing with that q**** at CU. This isn't a doctor who has to go on someone else's lab results. She was there. She ran the tests herself. She witnessed my transformation first-hand. I don't have to prove anything to her. I don't have to plead my case. She won't doubt me because she's the one who diagnosed me. I'm coming home, in a way.

There are many logistics to think about. I have to get from here to there. I have to stay there. I have to come back home. None of those are simple or easy decisions. My body has some very particular ideas on how it likes to be treated. Being thrust up to 30,000-ft in a pressurized cabin isn't generally on the list. Financial costs are another issue. The plane ticket alone will be at least $200, and that's a lot of money to me these days. I used to be able to spend that on dinner. Not often, but I could do it without it hurting. Nowadays, that's a month's supply of food if I'm careful.

Still... the work in front of me is an opportunity. Yeah, it's scary and looks overwhelming. Travel is a big deal for my body. I have a lot of careful planning to do. I can't just rely on Plan A. I need to set up safety measures in case life decides to do something else. After all, as John Lennon put it, "Life is what happens to you while you're making other plans." I have a lot to think (read: worry) about, but it's so much better than having no options left.

And I couldn't have wished for better. *squee!!*

Medical PTSD

It was my brother, an OIF Veteran, who recognized my behavior pattern as PTSD. "Pam..." he said to me very gently, "you react to things just like I do." It was if the clouds parted and suddenly everything became clear. I had PTSD from my medical experiences. I've gone into details with my counselors and one close friend who also understands PTSD first-hand, and that has helped a lot. Each of us has it from a different source, but if you change the words around, the situations are the same. The feelings are the same. The panic about doing things that could potentially help you... Being so overwhelmed by something so simple that you freeze and shut down. Wanting to run and not knowing where to run to so just vibrating in place. Yeah... it's real. It's crippling. It's a disease. Right now, I need to face having an MRI, and I'm terrified.

I'm not claustrophobic. Nothing that straightforward. It's not the medical procedure itself. I'm actually worried that the results will be negative. They're always negative. But that's not unusual for my disease. From what I've read this disease only presents on a scan about 50% of the time. I'm worried that this is going to be used against me for the purposes of denying me care. "You're just crazy. You need to come off your medication and you'll be fine." That's what the last doctors said. That was based off of test results that every other doctor has looked at and said, "No, that's an abnormal response." But they're not the doctors taking care of me for this...

I was told so long for a child that I wasn't sick. That I just needed to try harder. Then I get really sick and find out, "You should be in a coma. I don't know how you're up and walking around!" Well, this isn't far off from normal for me, doc. This isn't that bad. What do you mean I'm a death's door?

It was tested by three different labs. One was a cardiologist. One was the Navy. One was an endocrinologist. This was over a 6 month period. I was later retested in Everett and Seattle. I was retested in St. Louis. I was retested here. All of that should have meant something. But it didn't and she wan't listening to me when I told her I was getting sicker without the medication.

Now it's an MRI and I'm betting that it's going to come back clean, and these new endocrinologists are going to start singing the other doctor's tune: you're fine. You're just delusional. None of those symptoms ever happened. All of those previous doctors didn't know what they were doing. Stop bothering us, kid. You're not that sick...

Really? I landed in the ER with a blood pressure of 80/40 from vomiting and that was just what... Magic? That's not an adrenal crash? I just don't know how to vomit properly? Please enlighten me so that I may do these things the right way and not waste your time.

But I can't say any of that, now, can I? The easiest thing a doctor can say is, "No." That's the shortest complete sentence in the English language, by the way. No. No, we don't think you have this disease. No, we're not going to give you access to treatment. No, we don't have access to the antibody test that would show your disease. No, we have nothing left for you. Whatever it is you have going on? Not our problem. Go away.

And then what do I do? Do I go back to my old doctors who diagnosed me? They're in Seattle and I'm in Denver. How do I accomplish this? Can I even muster the strength to try to see this through? Do I give up on this side of it for a while and instead concentrate on the small fiber neuropathy?

Oh, and that 50% chance it may actually show on my MRI? That feels more like 0.000005% of a chance. I though the abnormal blood tests would be enough, but apparently not. So now I don't know what it will take, and that's terrifying. I thought I had a leg to stand on, but the ground gave way beneath my feet.

Well, here goes. Off to the appointment and we'll see what happens on the other side.

I met another unicorn!!!

I say we're unicorns because we're the case that doctors learn about in school, but are never supposed to see in their practice. I finally have talked to another person who has my disease!! She's a lovely woman from Kentucky with that slight southern drawl that puts you immediately at ease. We talked for a few hours comparing notes and symptoms, sharing horror stories and difficulties. And above all, we shared our fighting spirit. Neither of us wants to settle for a marginal quality of life. We want to know about our disease in order to conquer it. We don't need to be what we once were, but we know we can be better than this.

Our pattern of disease is very similar, as is our current list of complaints. We've both run into the same sort of stigma in the health community, and similar apathy from health professionals towards our disease. It was like I suddenly had a sister who I was able to turn to and validate, "yup, our parents are off their rocker on this one...". I learned that my experience was not unique, and therefore not my fault.

Now that I know this, I have a whole new crop of questions. Why aren't doctors more interested in our case? Why go into medicine if not to delve into these mysteries? I feel left out in the wilderness because of what seems to be a reluctance to leave the well-lit safety of "what we know." Our symptoms get managed at the absolute bare minimum, but we're never actually given a quality of life. Why is that? Our doctors, wonderful though they may be, shy away from acknowledging the chronic pain and resulting fatigue. (I suspect the War on Drugs has a lot to do with that.) I was absolutely shocked when I finally got a diagnosis of small fiber neuropathy, because that meant an acknowledgement of my pain. And I was able to pass along the name of that diagnosis to my new friend. We're going to keep in touch to see what sort of progress we can make: her in Kentucky, me in Colorado.

One good thing I learned was that going to a specialty clinic like The Cleveland Clinic wouldn't help me. She'd already been and they really had nothing new for her. They were more interested in her doctor, who was able to diagnose her, than they were in her. It was as I suspected: a lot of great marketing, but really the same health care opportunities (or lack thereof) beneath. I dodged a bullet, thanks to her exploration.

I think the most important thing I learned though was that she was just as frustrated as I. She too was driven to find her own answers. She has the same level of dissatisfaction that I do. We both believe there's a more aggressive way to treat us that would give us a better quality of life. We hate that we can't make plans on Monday for Friday, and know we're going to be okay once Friday arrives. We know that pain management exists. We just don't understand why we're being denied access to it. We have a disease that can be verified with blood tests. It's not like there's nothing else wrong with us. Why is it so difficult to believe we have chronic pain as well? Why is it so difficult to understand that some days are worse than others, and flares are unpredictable? Why is it so hard to believe that we really are trying to be more active in life, and aren't just looking for some fix?

There are two conclusions I come to: either they can't/don't care, or they can/do care but it doesn't matter---there are outside forces at work. This is what upsets me most about our health care system. It seems like there is so much that goes on behind the scenes that we don't get to know about but has an affect on our care anyway. The doctors are making their decisions based on what they see, but they rarely explain what it is they're concerned about. I know I would only need a baby dose, 2.5mg, of oxycontin twice a day to handle my regular level of pain. I know that for my flares, I could need as much as 20mg, at worst. That's less than I was on for my chronic migraines. At that time I was on 60mg, three times a day, with a free pass to the ER for as much dilaudid as I wanted. My pain isn't that bad now. I don't need that high a dose or a note for the ER, like before. But still there's this absolute reluctance.

There's also a reluctance by our doctors to prescribe additional medications, even though we are still suffering symptoms. I know I did better when I was taking additional T3 supplements for my thyroid. I had to move, so I lost that doctor. Since then, I keep getting this song and dance that, "because it's not proven..." they don't want to try it. Well, I've been on it before and I felt better. I performed better throughout my day. I was healthier. Isn't that proof enough? But getting a doctor to reach that conclusion is like pulling teeth. This reluctance makes much less sense to me, since we're not even talking about abusive substances. So what's going on there? I don't know that we'll ever get to know.

Even though it's not all good news, it's still a huge relief to know I'm not alone anymore. These problems that I've encountered are not unique. My symptoms are not unique (we both turn ash grey with a bad migraine!). I have validation. I have confirmation. I have a sister-in-arms in this battle against our disease. I feel recharged and ready to give my all again. I'm not just fighting for me. I'm fighting for her too, and she's fighting for me. Together, we can make better progress than we could have alone.

Christmas came early this year ^_^
(Published with permission)

New neuroendocrinologist is good!!!

The new neuroendocrinologist is good!!! She's a fellow, and even brought in her supervisor, and neither had any doubt about my diagnosis. There is even a test for the antibody that they know about, but it's only made in Israel. Still, they're going to see if they can get a hold of it. Meanwhile, they want me on my medication, but we're going to switch to hydrocortisone to see if I tolerate that better than the prednisone. They're going to do research on azathioprine to see if I can try it safely. Man, I was really scared there for a while. But now it really looks like Colorado is the right place for me. Whew!!! ^_^

[Edited to add]
Unfortunately, this did not remain true. The new neuroendocrinologist started singing the old neuroendocrinologists' tune. However, my old endocrinologist who witnessed my disease go into full remission and return, got promoted to the head of neuroendocrinology at Swedish Hospital in Seattle. The journey continues.

Got into CU Endocrinology!!!

And here I had scheduled an appointment in my calendar to check who had received records. !@*#, that was fast! Last time it took over a year to get me in to a neuroendocrinologist. Apparently when you have documentation to support the fact that you're a medical unicorn, the right people do pay attention. My appointment is for Sept 9th. Wow.

I haven't even begun treatment (which may, in fact, be its own nightmare, but who cares!) and already I can feel the relief of hope being in sight. And the not-so-noble side of me grins widely at the number of plates of crow I get to serve. I am among the partakers, because as I've said before, I never thought I'd see this in my lifetime.

Holy moley... The receptionist even sounded excited to leave me a voice mail. Last time I talked to them it was an absolute "NO!" to seeing one of their GPs. Oh, how the tides have turned!!

It's delicious.

Can azathioprine fix me???

This is insanely hopeful. I actually have a reason to go back to my doctors beyond managed care!!!!!

Recurrent autoimmune hypophysitis successfully treated with glucocorticoids plus azathioprine: a report of three cases;

I have something to fight for... oh, man, this sets new wind in my sails. I guess it was a wise decision to take that break! ^_^

Azathioprine is kind of a scary drug, as it may increase my risk to infection, and I'm already a high-risk category, but it's worth the chance at a cure!

This article was just posted a week ago. Such good news!!!