Monday, November 22, 2010

OMG WTF BBQ?

"You don't have adrenal suppression."

"These symptoms are not adrenal."

"I am not mad at you. You should not be mad at me." (I didn't say a damn thing to trigger this statement at all. I have no idea where it came from or what prompted it.)

I don't even know where to start on today's appt with the pulmo.

1. BP was 150/100. I tried to be cool, but I was very stressed. And angry, don't forget angry.

2.The whole idea that the symptoms aren't adrenal is just odd. Yes, there are differential diagnoses that could be explored but based on my previous SAI history and the current endo's opinion that I have SAI and the fact that no one is really doing anything about ruling other things in or out, there's no opportunity to entertain anything else.

There's no data either way. Until someone takes responsibility to break the stalemate, I'm sh*t outta luck.

I asked what I should do to rule out/in other things.

"Go see the other endo the PCP referred you to."

"What do I do after that? Come back to you?"

"Well..............if you need to." As in not really wanting me to come back.

WTF does that mean? Is there a plan to figure this out or not? If you don't want to buy the adrenal diagnosis, then DO something about it. Or just tell me you think I'm nuts and need Xanax, whatever, but don't leave me hanging. That is not cool.

3. Why do I have to push to get doctors to do what they said they were going to do? Why do they forget what they were going to do in between appointments? Can they not write it down?

This is a consistent problem across the board. Look, we agreed the CT scan for the lung tumor was going to be at the end of the year partly for financial reasons on my part, partly because every single other medical person I know and medical association I know says the follow-up CT scan should be at 6 months not 12.

8 months seems like a happy compromise, work with me doc. Because my family? Is not happy that you're making me wait 8 months and you do not want to go there. I don't want to go there. Order the f*cking test like you said you would and let's all hope the damn thing is gone.

Otherwise? My entire family is going to bring their very loud dysfunction to your office. I won't like that and I know you won't either.

4.Apparently the pulmo did order the cortisol test BUT I never knew about it. I don't know what happened. Maybe I missed something or if they forgot to tell me, but the last conversation I had with the pulmo before getting the current endo involved was "wait 2 weeks and then we'll test the cortisol." There was no way I could wait two weeks.

I suspect they put the order in for the test and told me "wait 2 weeks", but I didn't know I could take the test at any time.

Or I would've.

As I have alluded to time and time again. The lack of good medical care and, apparently, basic communication is going to screw me up. I have not had proper testing. I have an educated opinion with one endo, but no testing. Without testing all I am going to hear from the pulmo and likely other doctors is, "It's not adrenal."

Do you know what they do to people who might have adrenal problems and are on steroids but didn't have proper testing? They wean them cold turkey and, if that doesn't kill them, they run the blood work.

They don't care if you have a small child to care for. They don't care how much pain that causes. They don't care if it hurts or if you have to work. They don't care if you are competent to drive or that it is their dysfunction that made this mess, you get to suffer all the pain of the clean up.

F*ckers.

4 comments:

  1. And me again...

    Oral steroids can raise your blood pressure. In adrenal insufficiency, if it's not severe, the body can try to compensate for the lack of cortisol, and have high bp and hypertension at times (happened to my family member too).

    Then, if you're taking BP meds, things can go low (yep, we remember that too).

    It's hard to separate actual disease from medication side effects. We never did have a doctor do so - we just gradually d/c'd ever med that wasn't absolutely necessary.

    btw - I also noticed you are taking more mag citrate per day then the what I believe the recommended maximum (a little over) - note effects of too much mag citrate are "magnesium overdose can result in serious complication such as slow heart beat, low blood pressure, nausea, drowsiness, etc." I wonder if that could be a factor.

    Tracy

    ReplyDelete
  2. Tracey: Thanks for all your comments sorry I have not kept up with responding. I appreciate all the information you have provided.

    Oral steroids make my blood pressure normal. I was high earlier this year. Got sick started prednisone and didn't need BP meds anymore. Well look at that.

    I am ONLY super high at the doctor's office or right before a crash. That is the pattern. I spend A LOT of time ping ponging from high to way too low and very little time in normal anymore.

    My BP right this moment is 120/80. I know that whitecoat htn is considered to still be hypertension (if I am remembering correctly) however, I don't even know if it's true whitecoat hypertension. It's beyond simple anxiety at this point and I doubt it will resolve until I get better and have had some time away from doctors and constant medical stupidity. The pressure is immense, for it to be anything other than incredibly stressful is impossible.

    The mag actually is due to low carb, it tends to make me low in magnesium. The levels haven't been tested though in a while though because doctors don't do that unless they are familiar with low carb and most are not. So I don't know for sure what the mag is doing in my body at this moment, but my body tends to run low.

    I don't have diarrhea at the dose I'm at, which is, from what I recall, a sign of over supplementation.

    It also helps relieve the leftover muscle pain/cramping from the last time I had SAI, which never quite went away. Mag and Potassium make a big difference in that.

    M

    ReplyDelete
  3. Oh no problem, everyone gives me an "e" :)

    Parts of your story are so similar to my family members.

    Going high before a crash makes sense - the body can compensate... for a while.

    The mag citrate was just a thought.

    Whiteocoat hypertension tends to more be systolic (first number) as that is a measure of anxiety. The diastolic (lower number) shouldn't really go crazy for the doc (although I find many docs hypertension worthy myself).

    The problem the docs have with us, is the patient has a medical education, and I sort of secondarily acquired one. So we're not so easy to BS. I could tell you stories... occasionally very gratifying. There was one very high placed endocrinologist, who got to look very very foolish.

    Tracy

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/