Normal

Heeeeey.

Guess what?

When I finally ate something other than a handful of peanuts and some lettuce (under the guise that I wasn't hungry) yesterday, I felt a little less 'altered mental status'.

Wow.

Eat food. Feel good.

Who knew?

So the tilt test?

Normal.

Like I originally thought.

Although it had me going for a moment.

Digging deep deep deeeeeeeeeeeep in that dark rabbit hole.

Shrug.

F*ck if I know.

I did say, again, if the wean down to subphysiologic doses of steroids didn't go well that I want another challenge.

They didn't say no.

Or yes.

Or maybe.

In fact, they did not respond at all.

But they didn't say no.

Progress????

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Lacking Clarity

Okay, my brain is working at the moment. Although we are not going to dwell on how long it took me to remember what month it was just a few minutes ago. Yikes. Old age and steroids are not a good combination.

I was able to verify the test results with the endo today.

Baseline Cortisol: 13

30 Min Cortisol: Drawn too late to matter so it's not relevant.

60 Min Cortisol: 20.6

Now, there are about a million ways to interpret these results.

The endo I am seeing is being very conservative, almost rigidly so with this idea that I'm fine.

Some medical literature, well respected and well researched literature, would classify me as borderline and recommend further testing.

Other medical literature says I failed the test and need more testing to determine if I'm primary or secondary.

And even other medical literature would ask why the hell we are testing anything since the test results are invalid so long as I'm on any amount of steroid.

Adrenal Insufficiency (AI) patients (the real experts!) fall into three camps: I flat out failed the test OR the test is null because the timing was off and the test was so stressful OR it was not relevant unless I used another steroid for a few weeks before the test, one that doesn't affect the test like Hydrocortisone or Prednisone.

Endo #2, by the way, felt testing was pointless while on steroids.

Endo #3 feels that anything with a final value over 18 or 20 is fine, even though it was supposed to double to 26 and did not. The baseline of 13 is either low per medical literature or suspect, it is not actually as good as I had initially thought.

So pick your perspective. There's a study/data to support nothing being wrong, a borderline case of adrenal insufficiency (AI) or full blown AI.

What do I think?

Well, I am pleasantly surprised by the 13 baseline. Remember, I've had baselines of 1.9 and 5 so this is not without hope for me. So even though 13 is not great by medical standards, I'm actually pleased. Like I said in the previous post, I am hoping hoping hoping that I'm coming back from the abyss.

The thing is I don't know anything for sure and it is awfully hard to suffer through this muscle pain and not know if it's doing me any good.

Ergo, I would like another Cosyntropin Challenge when I get to a sub-physiologic steroid dose just to be sure. Because we really haven't established if adrenal function is recoverable or not and the fact that I had weaned and then couldn't live without steroids all of a sudden is kind of disturbing.

Although apparently I am the only one who is disturbed.

Endo #3 flatly refused to order another challenge test today. Instead what is happening is all my symptoms are being farmed out to other specialties as if nothing is related or derivative. As if my body is spontaneously having disparate unrelated problems.

I'm now scheduled for a tilt table test because that is apparently the key to understanding my bizarro blood pressure. Only I don't expect much because my blood pressure isn't wonky on a consistent basis, not enough so to perform properly for a medical test. I fully anticipate that test to show nothing.

Also the test appears to be used with fibromyalgia and chronic fatigue patients; throwaway diagnoses that garner even less respect and care than adrenal issues. NOT the direction I want to go! I am not running for the worst diagnosis to get medical care for prize.

As for the rheumatologist (sp?), I am holding off on that as I think the muscle pain will fade soon. It was triggered by the challenge test and I exacerbated it by splitting the steroid dose and also decreasing it by 5mg. Why I wondered why I hurt so bad, I don't understand. You would think I've never done this before.

I mean I knew it was steroid induced but it didn't occur to me until just now to wait it out and just reiterate with the endo that it's from the steroids. If it goes away, it's not a problem, right?

My hope is by the time I get down to 20mg of Hydrocortisone (which is sub-physiologic) that I can call the endo and basically throw myself at their feet and beg like a puppy for another challenge test. Given that the science is so wishy-washy on my results, it seems only logical to gather more data to see if a definitive conclusion can be reached.

I have been told not to stress dose. That if I have low bp, bilateral back pain, nausea etc... that it's not adrenal (that is kind of a dangerous statement, but ooooookay). That I am on enough steroids that I can't have a crisis (that is patently not true).

So as professional as endo 3 has been, I really haven't achieved much. I continue to feel like I'm the only one who ever has a clue and wonder why it is that patients are the only ones who seem to ever read the medical literature.

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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.

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Stick It to Me If You Can

Guess how many sticks it took to gain IV access this morning?

Previous stick record: 17

Previous time record: 1.5 hours

So guess how much butchery it took today?

10 sticks.

3 nurses.

45 minutes to get the IV, which promptly died after yielding one tube of blood.

20 minutes to get the next vial of blood.

Another 20 minutes for the last vial of blood.

Which they couldn't even fill all the way.

I have bruises that would make a heroin addict wince. Never has it hurt so much to give blood, but they kept trying to flush with saline so I got painful bubbles under my skin.

Plus I ruined my shirt running hot water over my arms. They clean the sinks with bleach so the water splattering my shirt had a touch of bleach in it. Glad I didn't dress up.

So basically, major suckage. I have terrible veins. The nurse told me she'd never seen someone so bad in 15 years (which I hope that is not a common experience because boy would that suck if my veins really were the most awful of awful).

When I'm a good stick, I'm a very very good stick. When I'm a bad stick, I'm very very bad. No in between.

Apologies to everyone working in health care.

Now let's pray the test results are meaningful. Although I'm a little concerned how valid the results will be given it's a timed test and they couldn't do any of the draws on time due to my crappy veins.

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The World Will End on December 30th, No Wait Make that January 3rd

To review, I missed cortisol test opportunity #1 because the pulmo told me to wait two weeks at the time, which I could not do and I didn't argue the point.

Because I was too out of it to argue.

Then the pulmo gave me attitude in Nov saying they ordered the test and I didn't show up.

And I was like, nuh-uh, you told me wait two weeks and I couldn't wait that long.

Then the endo at the time didn't require a test as they were comfortable meshing my history, my symptoms and the sequence of events around them.

Plus I was too far gone to wait another day, in my humble opinion.

Now the new endo ordered a cortisol challenge test. The secretary tried to call me but the call didn't go to voicemail.

So they couldn't leave a message, but went ahead and set me up for a cortisol test yesterday and never tried to call me back to tell me about it.

Since I am not telepathic, I missed that test.

(I hope they don't bill for that. It wasn't my fault.)

Now I have to wait until 12/30 because they are completely booked to infinity and beyond.

No wait, they screwed up. Again. Now I will have the blood test on January 3rd which is SO awesome because it will be completely self-pay.

Clearly the world will end on that date because there is no way I am ever going to get a cortisol test. Or be able to afford one by the time they do get their act together.

Congratulations health care in America, you've made me cry.

I left a message with the secretary begging for them to see if they can do anything this month still. Anything.

As for the hydrocortisone, the 20mg is not so hot. The fatigue is excising options like going grocery shopping, exercising, driving competently, staying conscious and eating. So I have called to get the dose adjusted.

At least I didn't waste the snow day yesterday. The hubby took the day off to go to the parent-teacher conference, which was canceled due to weather, so I had him drive us to various stores because he grew up in E. Europe where hairpin mountain curves are never plowed*. He likes near death driving experiences in the winter. Also, his adrenal glands work.

I got a lot of Christmas shopping done so that was a positive. Even if I did take a nap on the hubby's shoulder while the toddler played at the mall playground.

*They don't mow the cemeteries either unless someone dies. Communism didn't do a lot of infrastructure maintenance.

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