Wednesday, December 29, 2010

More of the Same

I heard back from the endo on the ACTH challenge. Apparently I'm fiiiiiine.


Let's hope it's the case that the HC wearing off and leaving me hanging (painfully so) for half the day is finally prompting my brain to do its job.

I've sent a request for my medical records so I can verify the actual test results. I managed to finagle the numbers out of a nurse, but can't rule out the possibility that they gave me wrong info.

If what the nurse told me is right, well yeah I am making some cortisol*, but the values didn't double and weren't high enough in total to rule out Secondary Adrenal Insufficiency.

Also, if the nurse is right, the endo maybe misread my results. So, yeah, I need my medical records.

Best case scenario, this test shows some recovery going on.

But I bet I will need another challenge for comparison to know that for sure.

I also bet the endo will not be happy that I want another test.

I am so tired of doctors. Over it.

The endo did not give me a taper schedule and actually gave no instructions at all. So I am over here playing around with things. Again. I'm experimenting with my dose because...

The muscle cramps are awful. They have been awful. All those times I mentioned that they were improving? Were when I had high levels of hydrocortisone in my system which minimized the cramps. Come 3 or 4pm, I feel like I'm being squeezed by a python.

It is incredibly painful and debilitating. It lasts for about 5 hours and then slowly improves (possibly a sign that my brain is realizing it needs to do something????).

The endo thinks I should see a rheumatologist (sp?) and is not connecting the pain to the steroids wearing off. Nor do they care. They are suffering from 'all your results are normal by my standards so you are fine and should go away now' syndrome.

Have I mentioned that I am SO Over It?

The endo also doesn't want me to split dose because then I will have too much HC in my system and not enough time with it out of my system.

While I respect and understand that position, it is not going to work for me. So I've been experimenting, trying to push back the muscle pain until 8pm or so. Most adrenal insufficiency patients do a morning and mid to late afternoon split dose. I don't need to do such a late second dose, I can do it around noon, which means I still have time with no HC in my system.

Unfortunately, that means the pain and muscle spasms hit right when I want to sleep. That's not going to work either.

Today I'm trying to delay the steroids as long as I can in an effort to push back the cramps. We'll see how that goes. As it stands right now, my brain is kind of not working well. If this post makes zero sense, that's why. Not enough steroids.

And I need to call the endo and point out that they really never gave me a game plan.

*See also how estrogen birth control pills and PCOS estrogen dominance can inflate cortisol. Which is a good thing for me I think. Some AI patients report baseline cortisol levels as high as 16 while on the pill. I was not that high, but it was respectable (I'm holding off on sharing values until I can confirm them).

By the way did you know that progesterone is a precursor of cortisol and that I don't really make any? Interesting, no? This is all so much more complex than one blood test.


  1. I know I've said it before, but I'll say it again: have you been tested for celiac disease? If not, then why not?

  2. Celiac is highly suspect because:

    1. When I do eat gluten, it makes me feel good, not bad*. Especially with the low blood sugar from the steroids. I don't have blood sugar crashes anymore when I eat gluten or sugar. I just feel really good with carbs now.

    Except for holidays, I am gluten free anyway.

    *Okay, when I've been super low carb for a long period and have a lot of sugar/wheat, my gut is not so thrilled but that is typical with LC as the digestive system adapts to LC and then can't quite process the carbs. My system adjusts and I'm fine.

    2.All symptoms started with the crappy steroid taper in March 2010. No major complaints before that.

    3.I have been through this twice before. It's more intense and more 'adrenal' now than it was, but it is the same set of symptoms. Same amount of medical ignorance too.

    4.The blood pressure spikes and drops in conjunction with bilateral mid back pain and shortness of breath are not part of Celiac symptoms.

    The sequence of events and medical history do not point toward Celiac being the root cause of my current problems.

    I may or may not have it, but given that I am avoiding gluten anyway and not showing any improvement doing that, well, that doesn't seem to be the answer.

    Plus after I had my daughter, I ate gluten for 2.5 years as I was not low carbing. No ill effects.

    This is why I am not pursuing Celiac's.


  3. By the way here are people talking about what happens when they eat gluten:

    While there is some symptom cross over, I don't identify at all with their experience/sequence of events. I eat and I'm fine. I ate a bunch of cookies to deal with some tanking BP on Xmas Eve and felt better because of it.

    No gas. No diarrhea. Fine.


  4. ok, Just asking, because symptoms are different for each person, not everyone has GI symptoms (they're actually the least of my problems when I get glutened). But I thought I'd ask, just in case. I'm glad you don't have it. :)


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