Tuesday, November 16, 2010

Truth

I am holding steady at 3mg the same way a rock climber hangs by one hand after their ropes have split and the edge of the cliff looms large.

We'll see if I can pull this one off or not.

And for future reference, when your toddler tells you they are eating your soup, don't get too excited.

They are not eating your soup.

They are feeding it to the dog.

Along with a stick of butter.

So doing the happy dance in the other room because she's eating soup packed with vegetables is kind of irresponsible parenting.

Three year olds are a danger to themselves and others. They know just enough to get the lid off the probiotics supplement container, but not enough to realize eating them all may result in unpleasantly sh*tting their brains out later.

Your husband will not know what to do and when he calls you at work to ask, you will tell him it's probably fine, but call Poison Control just to be sure. And he will ignore you because why no one will ever know, however, your banshee shrieking upon uncovering this oversight will certainly ensure he doesn't do that again. Or so you hope.

True story.

Parenting: The only job you'll ever love with all your heart and never be good enough for. The performance reviews are bruuuutal.

True story.

Okay. Moving on. Let's answer some questions from yesterday's post.

Ezekiel asked: "If, hypothetically, your cortisol production doesn't wake up again is there an alternative to pred?"

Yes, but I don't know what the doctors would actually end up prescribing. But yes there are other steroid meds, some are considered better than prednisone. More detail on this when I answer the next few questions.

Anonymous wrote: "I think you're trying to taper too fast. I know most docs say to drop every two weeks, but for some of us it appears we are much, much more sensitive to the drops and the side effects of tapering make it soooooo hard to get through the days. I really think you need to stay at each dose longer and also go down by smaller amounts than 1 mg. Also, I've read that if you use your rescue inhaler more than twice a week, your asthma is not well controlled. "

You know, all the pulmonologists and endos I've seen all subscribe to the 5 day taper paradigm. I have heard of longer tapers, which is what inspired me to stick at 3mg for two weeks, but no actual medical professional has ever advised this.

As for the asthma, eh. It's annoying and unpleasant, but not impressive. I've seen worse. I'm not too worried about it. Once I get my adrenal glands going again, I will be willing to add in more asthma meds like Pulmicort, but I really don't want to muddy the waters with more steroids. They say the inhaled steroids don't have the side effects of the oral ones and true, it's not as bad, but I still react to them.

Yes, I am a special snow flake.

You may all applause. Delicately though, I am sensitive.

Edited to clarify: The asthma is the same no matter what I do. The amount of breakthrough symptoms and use of rescue inhaler has been steady so what's the point of more meds? I've done it both ways, there's no difference.

Tracy wrote: "Mayo's endos in Minnesota do adrenals just fine in person - we've seen them for secondary adrenal suppression among other things. In fact, Mayo has one of (if not the) top experts in the world in adrenal tumors.Why aren't they using hydrocortisone instead of prednisone? "

Either I am mis-remembering the info on Mayo or was actually on some other medical system website or didn't see the info you found. Or you got lucky (pass some of that luck over would ya?). The fatigue does kind of eat my memory similar to new parent sleep deprivation.

From what I have read, the steroid used for Secondary Adrenal Suppression varies. It can be either HC or prednisone. Several pieces of medical literature I've read prefer prednisone over HC for SAI but no one ever says why, which is kind of odd since HC is supposedly superior.

Badturns wrote:I'm certainly not pushing the Mayo Clinic because I have no experience there, but I went to their endocrine site and looked at the doctor's profiles http://www.mayoclinic.org/endocrinology-rst/doctors.html There are some with adrenal function/dysfunction listed under "interests" and in their list of publications. E.g., this guy: http://www.mayoclinic.org/bio/10024956.html

Yeah, my memory of what I saw or didn't see where may be flawed or I may have missed something.

However, I will say I'm wary of 'pituitary centers' which is where some of the endos who do adrenals end up. Cushings patients often report cold abuse and lack of care when they seek help from those specialty centers--these are people who actually do have tumors on the pituitary and the pituitary centers are refusing to test! They get their diagnosis from a 'not pituitary center.' It's that f*cked up. Not saying it would happen to me, but, given my record thus far, I am really good at finding doctors who could give a sh*t.

Honestly, I feel awful for endocrine patients. The stories I read online are heartbreaking. People are ignored, belittled and mistreated...by the uber specialists, the doctors who are supposed to be the endgame of medical perfection. It's horrific. Believe it or not, I am nowhere near as bad off as some people. There are people out there who have proven tumors on their pituitary and the doctors still don't care. Isn't that crazy? Shame on those doctors.

Run2WinthePrize posted a comment on the Methacholine Challenge test and I just want to respond here too so she is sure to see my response.

1. MCT negatives have about a 10% error rate from what I remember so with all your symptoms I would definitely go to that other lab for another MCT to rule out operator error or equipment failure. A negative MCT is not 100% accurate and someone has to be that 10%, you know?

2.I hope you find an answer soon especially since you are so symptomatic.

And that's it. Did I miss anything?

3 comments:

  1. I know some Addisonians who use HC alone, I know some that use a combo of HC and pred. But I don't know anyone that just uses prednisone for Addison's. From what I have read HC acts faster then pred. And pred lasts longer. I've never taken prednisone.
    mo
    ps I take 20-25 mgs of HC daily. At 10 am, I gobble up 10 mg. Then about 1 I take another 10. Around 4'ish I'll take five if I think I need it. BUT, my needs could change tomorrow. And then I would need to experiment to find a better dose.

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  2. My family member has a similar deal - asthma and secondary adrenal suppression. We saw Mayo's endo, as well as other "fancy" ones elsewhere. His adrenals are ok-ish now. He also has a medical background. Here's some of what we have been told, that we believe.

    Asthma docs believe inhaled steroids don't aren't absorbed systemically and don't affect the adrenals. Endocrinologist believe they can be absorbed systemically, and can affect adrenals in some patients. The two fields don't agree. Who's right...?

    A five day prednisone taper is generally just fine. IF you don't have adrenal suppression. If you do (perhaps have been taking prednisone for a long time period) it can take up to months to get off steroids, and get the adrenals to "wake up".

    Prednisone suppresses the adrenals. Hydrocortisone suppresses them much less. Trying to get adrenals to wake up, hydrocortisone is preferred.

    Treatment is different than for Addison's - Addison's the person must be maintained on drugs - forever. Your goal is to get your own adrenals to wake up, if they will.

    There is no guarantee that adrenals will "wake up". Usually they do. It can take up to a year to be normal, and people may need steroid supplementation in times of illness or stress during that time.

    In our situation, his asthma is much better controlled with inhaled steroids. Even with those, and with hydrocortisone tapered slowly (weeks to months) his adrenals did wake up. Perfectly, not sure yet. But he's off oral steroids.

    In your place, I personally (and I am not a doctor) would consider the inhaled steroids - yes, it could affect you, but chances are lower. Using this, perhaps you could avoid big exacerbations, and subsequent I.V. and oral steroids, which almost certainly would affect your adrenals. Just my thought.

    I'd ask them to try hydrocortisone. I believe physiologic dose is 15mg per day, divided doses - some people need a little more. Obviously, a doc should know how to prescribe this, and not just go on what you (nor certainly I) am saying.

    Finally, apologies because I don't remember - all of what I wrote applies if you have actual adrenal suppression (low cortisol) in blood tests - I'm presuming you do. AM cortisol is more important diagnostically than PM.

    btw - the link I gave you wasn't on Mayo's site, it was elsewhere.

    Dr. Young (Mayo) in the link you showed above, is one of the world's experts in pheochromocytomas, an adrenal tumor.

    Obviously it has been for you - but secondary adrenal suppression shouldn't be rocket science for doctors. There isn't that much written - probably because it really isn't that complicated. I'm so sorry you are having such trouble getting doctors to figure it out.

    Tracy

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  3. I definitely don't blame you for being gun shy on the specialists. I've had terrible experiences with endometriosis and related problems from gynecologists. I had exactly one who didn't suck and even he dropped the ball, sometimes very horribly, now and then. I'd have stuck with him but I had to move for a job, so now I'm having surgery with gynecologists I don't know and with no good prospects on follow up. But I'll be damned if I'm going to subject myself to another round of choosing whether I prefer clueless and nice to slightly more knowledgeable but mean...

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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/