Who Has Been Diagnosed With Addison's Or Cushings? (Adrenal Disorders)

[Birdlady]

Adrenals seems to come up fairly often, so I'm wondering how many of us have a diagnosed adrenal disorder. I guess I am particularly interested in those with Addison's, but I wanted to include those on the high end too. I know high cortisol makes my POTS so much worse.

As some know I have an adrenal insufficiency diagnosis, but the treatment did not help with my POTS. I am wondering how many out there are in the same boat as me.

Here I thought I had my answer, but the POTS never got any better. Thanks everyone.

[kluesyk]

Yes, I also have addison's as well as hashimoto's and hyperadrenergic POTS.

Replacing the cortisol helped some but did not fix my health problems.

Sometimes I think the endocrine and autonomic systems are like spiderwebs, when one thread is broken it affects the whole web.

It is just hard to figure out how to repair and fix the system, especially when so many areas are affected.

[Birdlady]

Thanks so much for replying! Yeah I agree with you. It fixed some issues, but not enough to make my life normal. haha Does that sort of describe you as well?

Another thing to consider is that when taking exogenous hormones, it is impossible to mimic what the body would normally do on its own.

[Godsgal]

Hi...sometimes I get adrenaline rushes and it's extremely uncomfortable. If I take benadryl, it goes away. I have wondered about whether I have these? How do you go about checking?

[Birdlady]

That seems like something else. Benedryl would not make an Addison's patient feel any better. I have no idea about Cushing's though.

Addison's they usually do an ACTH stimulation test.

http://www.mayoclinic.com/health/addisons-disease/DS00361/DSECTION=tests-and-diagnosis

Cushings they do a series of tests.

http://csrf.net/page/diagnostic_testing_for_cushings_syndrome.php

I still get the same "adrenaline" rushes I had before Dx, so I think in POTS something else entirely is going on with that. Now those with Addison's will disagree with me and say I need more hydrocortisone, but I've been down that route a dozen times. More hydrocortisone does not stop it.

[Friedbrain]

I voted yes for Addison's Disease, but I actually have secondary adrenal insufficiency, meaning I don't make enough ACTH to stimulate my adrenals to produce enough cortisol. Same treatment, tho-I take cortef daily, and have for about 9 ys. However, even on ttmt for that, I have these other dysautonomia symptoms. I tried talking to my newendo about them and he kept handwaving and saying they weren't adrenal related and told me to find someone else to help for them. The doc who diagnosed the dysautonomia when I was experiencing the worst of these symptoms was a cardiologist where I used to live. Since my body can't respond to stress (because it doesn't make enough ACTH to kick my adrenals into action), I have a lot of trouble coping with stress; but on a day-to-day basis on the cortef, I've had good spells and bad spells so maybe that's the "and more" part of dysautonomia+adrenal insufficiency. Fwiw, I tapered a bit off my cortef this Spring, and have been having more lightheadedness and postural hypotension (hence, trying the midodrine, which I'm kinda afraid to try...). Sorry if that's too much info....!

[heathmcev]

I voted yes for Addison's Disease, but I actually have secondary adrenal insufficiency, meaning I don't make enough ACTH to stimulate my adrenals to produce enough cortisol.

I'm in the same boat as Friedbrain - diagnosed with Secondary Adrenal Insufficiency (not an autoimmune disease, but rather a dysfunction of the pituitary for what is, in me, idiopathic reasons). I also have Growth Hormone Deficiency which is also pituitary-based dysfuntion in my case. Both dx'd through an Insulin Tolerance Test. My ACTH Stim test was actually unremarkable - and interestingly my Endocrinologist (who is very knowledgeable about POTS) said that it is common in POTS to get a false-negative on ACTH Stim tests.

I was on hydrocortisone for a year (and looked like the Stay-Puff Marshmellow Man!! lol), then switched to prednisone for another year - but we decided that neither really made a difference in my fatigue levels. I now only take prednisone when I have flu, major stressor happening, or some other event that would cause an adrenal crisis-type thing (aka stress-dose steroid situation).

My POTS neuro & endocrinologist say they share several POTS patients with both adrenal insufficiency & POTS, and are trying to figure out why -- so far nothing. My Endo laughs and says he can't figure out how to test the connection without physically getting into the brain... no volunteers there!!

[Birdlady]

I changed the one yes answer to include secondary AI. I didn't mean to leave that out. So HC was not good for either of you with secondary? That is very interesting!

I find having AI with POTS makes things a bit more complicated not only with treatment but also with docs. Mine are afraid to do anything because the adrenal stuff scares the heck out of them...I tell them though I am quite stable on my HC dose and don't even think about it these days. I did gain a bit of weight over the past 2-3 years, but I think it was probably a good thing. At diagnosis I was a size 0 and felt like I was dying. I am now a size 6 and feel about as good as a person can with POTS.

[McBlonde]

I had a failure of my pituitary with low growth hormone, pre-mature menopause, hypothyroid and low aldosterone and renin... My endo keeps reminding me that you can stimulate your pituitary and it could works correctly, but in order for your body to work right, it has to get the message from your autonomic system....

'Soon-to-be-published research (Friedman, T., et al., in preparation) shows a few patterns of abnormalities in the renin-aldosterone axis. A little more than half the patients with fatigue had low blood levels of both renin and aldosterone. This is called hyporeninemic hypoaldosteronism and is probably due to dysfunction of what is called the autonomic nervous system, which sends messages from the brain to the kidneys. Other aspects of the autonomic nervous system have been found to be deficient in chronic fatigue syndrome.

Here is a paper he gives to his patients about autonomic disorder...cortisol, aldosterone etc. if you haven't read it. http://03342db.netsolhost.com/page/the_importance_of_the_adrenal_cortex_hormones_cortisol_and_aldosterone.php

[Relax86]

I had ACTH test which my mean endo said was normal. My symptoms started out being very adrenal. I used hydrocortisone and couldn't have gotten better without it. I am trying a new endo soon....I believe there is a disconnect in my pit-adrenal system. My adrenals may make cortisone but nothing is telling them to - I'm sure. I also have breast milk letdowns and can express milk. I'm 44 and not pregnant - so this seems more than a little off to me. I currently take 5mg 2x/day and would love to increase the dose - as I feel much better on cortisone than off but both my cardio and family doc are begging me to wean. I just can't let go of the 1 drug that seems to get me thru my days. I can't breathe without it.

[Birdlady]

Funny seeing this get bumped up! As of yesterday I am now 3 months cured of Addison's. I got prayer for my body and I no longer need to take HC. Seeing one thing leave has given me a lot of hope that POTS will too! woohoo!

[brethor9]

Hey Dana

Good for you! I actually bumped this after seeing my specialist yesterday for swelling I was having in my neck. He did his examination and told me he thinks I am showing early signs of Cushings which absolutely stunned me he believes it is related to the use of Florinef.....he said any time you are on a long term steroid regardless of the type of steroid, and the fact that it builds up in the tissues you are at risk for Cushings? I had no idea of this as I was told that florinef was a very mild steroid, apparently for me its not. Also, I am showing an enlarged liver which he believes is steroid related.....and that is all from a 1/4 dose of 1mg tablet....yikes!!!!! I am not that familiar with Addisons, is it like Cushings?

Bren

[Birdlady]

Cushings is the exact opposite of Addison's, so you have high cortisol levels. There are tests that can be run to check for cushings. Many docs are pretty ill informed when it comes to corticosteroid (pred, HC) and mineralocorticoid (florinef) use though...I took HC and florinef for over 3 years and never had Cushings. The only time I had temporary Cushings was when I was injected with 10mg of Dexamethasone and was orally taking 60mg of pred daily to stop a severe allergic reaction. My glucose was 300! lol Once I stopped taking it and it was out of my system, all was back to normal.

http://www.mayoclini...DSECTION=causes

If your doc thinks it's just from florinef, then perhaps he should try taking you off of it to see if the swelling goes away....You are on a small dose, so it seems unlikely, but as we all know, sometimes we react to meds in a weird way! haha We don't always follow the rule book! Good luck!

[spinner]

Yes, confirmed extremely low cortisol AM. Currently on cortisone, testosterone, b12.

[Relax86]

Although I've been recently posting that I feel 90% better I had a day yesterday where it took 2 hours to get dressed and the distance from the car to the store looked like a mile. Life with dysautonomia is still tricky even once close to recovered. I have always maintained that HC helped my body heal itself and finally weaned late Fall of 2012. But yesterday I popped a half and my breathing issues completely went away. My recovered my entire day from that point on. I feel better today, as if I will NOT have to take another dose. I realize that there are repercussions to using HC but I also am starting to believe my quality of life is important as well. I don't know a lot about stress dosing HC. I do know that my body doesn't respond well to stress but different than anxiety. For instance, if someone drops a book on the floor and startles me - my HR jumps to 130 and stays there for an hour, for no good reason except it doesn't know how to shut itself off. My pituitary testing checked out find and so did my cotrosyn. Always wondered if the cotrosyn was a false negative because that Endo literally hated me and said I was crazy from the start. He did find low blood volume but said I skewed it myself.