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06/06/2009 08:32 PM

low cortisol

mdebroux1724
mdebroux1724Posts: 11
Member

My name is mellissa I am 24 years old and found out i have hypocortisolsim. It took the doctors 4 months to find out what was wrong with me. I was one step away from death. My first signs of this was rapid weight loss. I was already thin to begin with. 111 lbs then dropped down to 94lbs. I was weak couldnt get out of bed. dizzy when i stood up. my body hurt all over. I was depressed and had many anixety attacks. It came out of no where they first thought i had addisons disease but my acth levels are normal but when i first got my blood test done for cortisol it was .6 thats almost nothing thats how close i was to dying. im on hydrocortizon and I feel better finally. The only thing is why did this happen how does this happen? Out of no where I just got sick. Is there anything that makes this happen to people? Will I have this forever?
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06/07/2009 06:28 AM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Melissa

I am by no means an expert on this...

Primary Adrenal Insufficiency (which you appear to have based on your ACTH comments) is damage and destruction of the adrenal glands themselves. In my reading this has mainly been from autoimmune diseases and surgical reasons like tumor removals. I your case it looks like your own immune system destroyed them.

Secondary Adrenal Insufficiency is damage to the pituitary gland in some way. You can even cause SAI by over use of steroids. This suppresses the pits reaction to Cortisol levels and thus ACTH secretion.

If you have PAI you will be on HC or some other steroid forever. Depending on the failure mode of SAI some recovery can be made. I however have an irreversible SAI due to pituitary damage.

Adrenal failure diseases lack a lot of research and are relatively rare. I was undiagnosed for about 6 months and had quite a few hospital ER's got angry because there was "nothing wrong with me". Today I still find black and white knowledge sets. A recent ER visit was great, The doctor knew a lot about it and the limitations of knowledge. My GP however I have to educate and he doesnt like that!

Hope this helps!

Bob


06/07/2009 02:32 PM
mdebroux1724
mdebroux1724Posts: 11
Member

Thanks it does help. it is just so frustrating that out of no where this happened. when I look up what i have they always refer it as addison do i have addisons or is it just hypocotisolism? So if I went off the hc would I get sick again? I notice when I get a cold or get sick its hell is that cuz of my disease? I have only been to my endodoctor once so whats in store for me with my furture apts? do they test your levels every time? Is there more of a chance that there is something more wrong with me? Im new to this and the road ahead of me is grey and scared to whats next.

06/07/2009 03:05 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Melissa

Yes you would get sick again. HC is a replacement for something your body doesn't make. In fact if you are sick you have to up your dose slightly because this is what your body would do if it was working as intended. If you dont know about this please ask.

I have only ever been tested once. If you arent making any Cortisol now there is no point testing for its presence in future. There may of course be other problems that will surface. I for example seem to be turning from secondary to primary so I may need a test for my mineralocorticoid levels to establish if I need a replacement steroid for that as well. I can also argue that if I have a broken or faulty pituitary then other parts of the Endocrine system (like Thyroid, reproductive etc) might be affected in future. The pit is kind of at the center of it all. I see my endo maybe once a year.

My hear conflicting use of the term "Addisons". Some say it is simply that the adrenals are not producing enough steroids (glucocorticoid as well as mineralocorticoid), other say it is only the variety of adrenal insufficiency bought about by adrenal gland failure - commonly called primary adrenal insufficiency. The other type being secondary which is pituitary function failure. Hypocortisolism simply means low cortisol so it describes both problems but not all of the problem of primary! If you go to an ER I suggest you use the terms primary or secondary as it reduces confusion. Words like "autoimmune destruction of adrenal glands" will also explain it well.. Judging by your first post you have primary.

Future appointments? Probably just ask how you are feeling. The biggest symptoms are fatigue and water balance so your Endo will hopefully be able to address those for you. (If not ask us!) Pretty well all the people in this group have fatigue and water issues and I am trying to figure out what works best for me. You are going to have to take measures of yourself and look for things that might be Endo related, then bring them up in visits. Try and educate yourself too.

Last point.. Get your emergency response down pat. Get a solucortef injectable just in case. A bone break or an injury where you lose maybe half a cup of blood can be fatal so get a medical id tag and make sure your friends/family/co-workers know what has to be done. If you go into adrenal shock your brain may cease to be logical so others are going to have to step in and help. ER emergency response is to give you solocortef as well as saline/fluids. I have had three bags in the past when I was in shock. (I am a big guy though!)

Even more confusing?

Bob!


06/07/2009 03:24 PM
mdebroux1724
mdebroux1724Posts: 11
Member

I have a medical bracelet already I have not gottena script for an injection I have an apt in july so ill ask then. Water issues? what do you mean by that. water weight? I am ery thin and im just staring to get some weight back. but i have noticed my stomach is bloated. Does low cortisol effect a womens cycle? cuz mine is gone has been for three months? Does it cause body pain even when your on hc? I also have depression and anixty and have trouble sleeping. I am also very moody and now on seroquel and that seems to be working. Is all of these symptoms cuz of low cortisol? This is all new to me and im happy you are educating me on all this cuz im just lost.

thanks,

mel


06/07/2009 03:25 PM
mdebroux1724
mdebroux1724Posts: 11
Member

Also why did you have to go to the er so many times?

06/07/2009 03:54 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Mel

I was undiagnosed for about 6 months and visited the ER 4 times. I have only had one "known" adrenal event in an ER but they had to consider it for a few other visits with infections etc. If I got into a state where I was sick with something else my blood volume would drop from the lack of adrenal control. I have had so much saline! Since "acquiring" SAI I have had to make a few visits where my emergency/bad illness regime needed more assistance than just HC dose increases. I have a few other problems beside just SAI so I get into a mess sometimes!

Your adrenal glands regulate hydration through Potassium and Sodium. Secretion of aldosterone decreases the Potassium and makes your body retain more Sodium and thus water. When you have adrenal failure this regulation has to come from somewhere. Some of the aldosterone/mincerocorticoid can come from Hydrocortisone so some PAI sufferers can get away with just that. Otherwise you need to replace that steroid as well and eat (sodium) salt sometimes..

Sorry I am not much on female Endocrine stuff. Most of the others in this group are women so I hope they will chime in and offer a few ideas. In my view though, low Cortisol can affect ANY system so when you get your replacement therapy in sync and working well I hope these problems will cease. Too much Cortisol can make you moody and I guess make you retain water. Dont think of it as a single reason though as there are too many other things that can cause it. HC/Cortisol will also make you feel REAL good too. So much so that you have to be careful just taking it to feel better. Pains can disappear if you have enough but the long term side effects are not good!

Have a look through the group history as well. There is also one on a list of medical papers I posted if you really want to get into it!

Bob!


06/07/2009 08:04 PM
mdebroux1724
mdebroux1724Posts: 11
Member

ok thanks. long term side effects from the hc or the low cortisol?

06/08/2009 05:08 AM
bob3bob3
bob3bob3Posts: 4213
Senior Member

From the HC. Osteoporosis etc

06/11/2009 10:45 AM
77Robert77
77Robert77Posts: 24
Member

Hi Melissa,

You asked the question, "The only thing is why did this happen how does this happen? Out of no where I just got sick. Is there anything that makes this happen to people?"

In my case, my adrenal glands stopped producing cortisol as a result of synthetic steroid injections that I was receiving from my primary care physician PCP). After seeing my endocrinologist, she said that in her experience, steroid in form of injections, inhalers, skin creams, can change the level of steroids in your blood. When the pituitary gland senses the increased levels of the steriods in your blood, it does not trigger the adrenals to secrete cortisol...that's a lay mans description of what was explained to me.

Anyway, were you taking any medications that contained steroids (asthma inhaler, excema cream, etc.)?

That's just a shot in the dark and only one possible cause of how this could happen (as in my case).

Hope that you're feeling better,

Robert

Post edited by: 77Robert77, at: 06/11/2009 10:47 AM

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