Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Thursday, June 2, 2016

Call it what it is, adrenal insufficiency

Adrenal insufficiency, Addison's disease, PAI, SAI, hypoadrenalism, hypocorticolism, Sheehan's, Polyglandular Autoimmune Disorder on and on.

Yeah, I know my blog and website and business are all called "Addison's Support" but I made that call nearly a decade ago.  I'm not changing it now.  Live and learn.

When you don't produce cortisol, you don't.  95% of the time, it doesn't much matter what causes it*.  The treatment is the same, the monitoring is basically the same, emergency protocol is EXACTLY the same.  *Yes, I know 5% of you have a ginormous tumor or some odd thing going on or CAH.

For the most part, it's really stupid to use any terminology besides "adrenal insufficiency" in a medical setting (unless you're at the veterinarian, they seem to have a clue) unless you want to die a little faster or get poor treatment.  Addison's Disease means nearly nothing to most lay people and medical professionals.  You can't get good treatment if your doctor doesn't know what's going on!

Call it adrenal insufficiency.  Anyone who thinks about the words can figure it out.  Adrenals are not working right.  Sure they will probably jump to adrenaline but at least they will know what gland has an issue.  "Addison's Disease" says nothing more than some dude thought he was important enough to name a "Disease" after himself.

I put "Adrenal Insufficiency" on my emergency bracelet.  EMTs have less training than a doctor and will be on site first.  Do you think they will stop and look up "Addison's Disease"?  My guess is no or if they do, it will slow down the process of getting you to the ER.  They can't give you a shot (in most counties of most states in the US) so they have to transport you to the ER FAST.

In an emergency, there was some talk that secondaries didn't need 100 mg Solu-Cortef.  I'm not sure why.  If you don't make ACTH, you can't make cortisol.  If you can't make cortisol due to lack of ACTH stimulation or damage to the adrenal cortex, you can't make cortisol.  No cortisol in an emergency=death or brain damage.

Primary or secondary, you need to have the exact same hormones monitored.  Interestingly, many people are misdiagnosed as secondary because they had ACTH tested at the wrong time of day and protocol was not followed.  If a person is truly secondary, growth hormone should be monitored.  If a person is secondary, the adrenals can eventually atrophy and cause issues with sodium.  All the same stuff needs to be monitored.

No matter the cause of your AI, you need HC, maybe florinef, sodium monitored, thyroid monitored, sex hormones monitored.  If you're deficient, you need them replaced.  It makes no difference what you call your issues.

Make it easier on your heath care professional, call it adrenal insufficiency.  Heaven knows they have a hard enough time treating us properly without making them look things up.

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