More of the Same

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

Huh.

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.

So Confused

Spoke to the pulmo today. The thinking is Friday was the day my body just hit the wall.

Whaddaya mean we're not getting prednisone everyday? I'll show you what I think of that, missy.

So now we wait???? And retest in 2 weeks if things don't come back????

The thing that sucks about that is I have to live my life, you know? I have to clean my house (which I'm all for letting things slide when ill but, you know, basic hygiene = important). Cook. Work. Parent.

Forget exercise, I'm just trying to navigate the bare minimum of daily life. It feels like climbing Mount Everest.

Plus, to top things off, I need to baby the hubby who has been sick with some kind of stomach bug. Which, thank God I have not caught that. The last thing I need to be doing is puking. Hubby is never sick and is a typical guy; he can't handle the pain. So he has required lots of TLC at a time when just moving my arms is so. hard. and I keep falling asleep unintentionally.

And I'm confused on whether or not I'm anemic. The ER doc said "You barely have any red blood cells. You're probably anemic." The pulmo is saying "Eh, there are people walking around with hemoglobins of 10 and they're fine. You're not anemic. Don't worry about it."

I don't particularly care one way or the other, but I had been clinging to this idea that maybe the weakness and shortness of breath can be blamed on anemia. If I had my choice, I would much rather have anemia than low cortisol. Actually, I'd rather have neither, but since that is not how my body works, let's pick easy over hard, shall we?

The official prescription is to rest. Take it easy. When I feel bad, have some simple sugar and have someone watch me--if I don't improve call 911 and go to the ER.

Except....

I'm home alone.

Every day.

With the toddler.

Yeah, this is going to go well. *sarcasm*

What a mess, no? Just a hawt mess.

Well, let's focus on the positive shall we?

I can keep my eyes open.

I think I can drive okay.

I don't feel like I'm going to pass out.

That's it, that's all I got.

Post Script: 2010 has sucked for me and mine. Hubby has been sick multiple times and he is NEVER sick--he even went to the doctor of his own volition. The toddler was continuously sick from January through March. I was sick March through April, now going into May.

I told my husband, we may as well shoot for June so it's an even six months.