Sunday, March 8, 2009

I'm back!!!

Wow, I'm a bad blogger. I've been crazy busy lately with work- I presented out my final product for a project I worked on for three months just Friday. It's so good to be done with that (ok, I still have to present it one more time and do a little extra work with it, but I'm pretty much done now). And I went to NYC for a whirlwind trip last weekend. That was phenomenal! Got to see my girls from Stanford and reminisce...loved it. But that's no excuse for the ridiculously long hiatus from blog world. I'm back now, and you get to hear all about it!

I had my follow-up appointment with the endocrinologist a couple of weeks ago- it was not so good, let me tell you. I sat down in his office, knowing that my test results were normal (other than a trace of hemoglobin in my urine, as well as high creatinine and low osmolality) and expecting him to say I'm perfectly fine. I was not pleasantly surprised. He said that it looks like everything is normal, I don't have Cushing's, that "little something" I have in my brain is no big deal, a lot of people have those, and that he thinks the Lupron is what's causing all of my symptoms. I quickly reminded him that I've had these symptoms for two years and that some of them just got worse while on Lupron! He seemed really confused, looked back through his notes, told me that he had written that most of my symptoms STARTED three months ago...and I nearly got up and left. Luckily, Ben and my mom were in the room with me both at my initial visit with him and this time- and they confirmed that I had stated my symptoms have been around for years, thus the countless trips to doctors, the diagnosis of Hashimoto's disease, the question of thyroid cancer, the treatment of endometriosis, and the returning to doctors FIVE months ago (before the Lupron) to figure out why the symptoms were still there after another laparoscopy and now getting worse. That's when he told me I should see an internal medicine doctor because "there definitely seems to be something wrong, but nothing endocrine related". I mean, good Lord. I proceeded to ask him yet again about cyclical Cushing's and he said that the tests he did showed it doesn't look like Cushing's, but nothing could really rule out cyclical Cushing's. He then told me we could test again randomly later. I told him I wanted to have an open order for tests so I could do them when I was feeling "high". He said I could call him for a persciption and he would set that up whenever I needed it. I asked him when he thought I should test, according to my cycling symptoms. He said "when you feel really bad, that's when you should test". Everything I've read says usually when you feel BEST is when your cortisol is high, and when you feel really groggy and weak, that's when your cortisol is dipping. I told him this, but he disagreed. I also asked about doing midnight tests, and he said that "we stopped doing late night testing a long long time ago. Blood tests aren't accurate due to the stress a needle can cause, and how that can increase cortisol". Wow. I'm just blown away by the discrepancies I'm hearing...who do I believe??? So, drumroll, I set up an appointment with Dr. Friedman in Southern California, a specialist in cyclical Cushing's. I want to see someone who has seen OTHER patients who have symptoms that cycle back and forth- especially people who have these symptoms PLUS high cortisol, PLUS a pituitary tumor. If this guy tells me I don't have Cyclical Cushing's, I'll move on. At least he knows other cases and what cyclical actually looks like.

So anyway, I went to the internal medicine doctor that that endocrinologist recommended, and so far it's the only good thing that's come out of the Mayo Clinic for me. She was awesome. She sat in the office with me for over an hour, wrote down everything I said, had several hypotheses, actually had plans for how to test these hypotheses, and hang on...wait a minute...she BELIEVED ME! She actually believed that there's something wrong with this picture, that this all looks really weird, really wrong, and that something needs to be done about it. She did a neurological exam and said my muscles are way too weak- you THINK? I know when my muscles aren't right, I was a professional athlete. It was so nice to have a doctor believe me, and then see proof that there's something wrong. Now let's hope she follows through. That's the real test.

She took more urine, and she'll do a urine culture because the pain is still there in the mornings when I go to the bathroom. The endocrinologist at Mayo said a little hemoglobin in my urine is no big deal, and I had to ASK him about the creatinine and the hemoglobin and any problems he might see with that. He hadn't even looked at it. After looking, he said "yeah, you do have high creatinine. See the internist". Argh! Oh yeah, by the way- about a month ago when I saw my gynecologist, she took a urine sample for a culture because I mentioned my little morning problem. I called about two weeks ago for the results, and they lost the sample. They said the doc hadn't written anything about wanting a culture, so they probably threw it away. Done. I'm done. I don't even know what to say anymore. I keep wanting to give up and just pretend like I'm fine. I want to pretend like I never found out about that tumor...and that it actually ISN'T a big deal. But then I think about the possibility of figuring this all out, and maybe even curing it. I'll keep pushing for now. But I'm not happy about how the medical industry is dealing with any of this.

I should probably stop typing now before I get all worked up. I'll write more about my post-Lupron journey, my start on BCP, my upcoming appt. with Dr. Friedman, and some of the very interesting hypotheses the internist came up with. I'm sorry again for the long delay...but I'm back!

8 comments:

allisyn said...

wow girl, you have a LOT going on! i'm keepingn you in my prayers! just remember to NEVER give up :)

jessica said...

Wow, it's incredible how some of these doctors got a job! If the stress of a needle actually did raise the cortisol of a person, wouldn't EVERYONE's cortisol results come back elevated?? Geesh, what's wrong with these people!?! I pray that everything goes well with Dr. Friedman. Do you have an appointment set up with him yet?

judycolby said...

Oh man, he hasn't read any recent endo journals! Glad the internist is good.
Dr. F won't dissappoint you. Test as often as you want.
Usually most people do feel better when high, there are a few that get their highest results when they feel bad.
The best thing about Dr. F, is if at some point he's not sure you have Cushing's but you're still convinced, he'll let you keep testing.

Sew said...

Hey Ready Go....I also HAD stage IV endo but it was removed November 08 and things have never been BETTER!

I am also infertile with very wonky hormones after the endo was removed and I am working on them now. I went to the center of Endometriosis in Atlanta Ga who removed all of my endo.

I am on the fifth cycle after surgery. I got my period in the middle of the night and didn't even know it! No cramping, no headaches absolutely no pain whatsoever. If you can imagine fully clothed, hair and make up on to the T on cycle day 1!! For an endo girl that is almost unheard of....

Anyway, I can't tell if your endo was removed or not?

Sew said...

Thanks for your comment. I am so sorry about your endo. What a horrible disease. Is your endo coming back in different places or is it coming back in the same places it was originally removed.

I ask because I remember my Dr. telling me that it would not come back where it was removed. I am really curious. :)

preed said...

And...why do we need doctors??!!

Amanda said...

Oh I am SO sorry I have missed so much of what has been going on for you - I've been thinking about you but just couldn't get online long enough to check in (checking emails was hard enough during breaks at work because we sort of hot desk and finding a free computer can be hard!) I've just read the posts I've missed and can't believe how much you've been messed around *hug*... I really don't know what to say other than I am thinking of you all the time and hoping you get some proper answers soon. Oh and I'm so glad you had a great valentine's day - and thanks for tagging me - I'll get round to it once I've caught up with everybody's blogs!!

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