scared

I'm scared. I'm just starting on the path.  I've been diagnosed with adrenal insufficiency.  Almost no cortisol.  I see the endo guy the day after Christmas.  I don't know what is going to happen.  I guess I'm scared that I might have a tumor on my pituitary or something awful like that.  I don't have lots of the symptoms.  I have some dizziness, low blood pressure episode and nearly passing out when I got some kind of bug recently.  It hit me much harder than it should have with unexplained fever, headaches, night sweats etc etc.  All of this led to numerous visits to my primary care doc which led to the rheumatologist which has now led to the endo doc because of the almost no cortisol on a morning blood and urine test.  I know that no one can really tell me anything since I am in the very beginning of this journey....I guess I'm just looking for a community of others who "get it".  Thank you for listening.

[rumpled]

There is a lot of information in the health pages under *adrenal insufficiency* (somehow the thyroid and adrenal pages linked and so there is no way to get separate health pages). So reading up there may help.

As for getting it, it can be difficult as you may not look ill, but it can be very serious quickly when you have cortisol issues. It also means you are likely immuno-compromised and get sick more often. You have to learn to stress dose and how to handle when you get sick - as in how to increase fluids, salt and if you should add or avoid potassium (that is up to your body and testing - the norm is avoid but some of us need it). You will also need an *emergency kit* of sorts with an acto-vial of solu-cortef, needle and items such as alcohol pads, information on how to give the shot, contact info and I also have zofran and extra cortef pills.

The crux of low cortisol is that your body cannot manage sodium so when you start to feel awful - try something salty. That may help keep you out of trouble.

I also suggest that you get copies of all your tests. The stimulation test is often the last hurdle for diagnosis. As for a tumor on your pituitary - do you have a tan? What is your ACTH? ACTH would be super low (which can also be lab error - it is a very very fussy test) if it is pituitary source and cortisol will be low as well.  ACTH will be on the higher side if it is adrenal as the pituitary will be trying harder to signal the adrenals to work. However it is so hard to get a good ACTH test (chilled tube, spun immediately then frozen promptly) that a low reading can simply be a lousy lab tech.

[dagosto]

thank you so much for taking the time to write.  I'm just scaring myself to death researching stuff online :(  I know better but I just can't seem to resist.  I haven't had the ACTH test yet and a doctor friend told me that my cortisol reading was so low that it could indeed be a lab error.  I did have a below normal sodium level also when I was sick with whatever bug I had so thanks for the advice on kicking up the salt a bit.  The after hours doc that saw me and did the blood test that showed low sodium told me also to start salting things.  I don't have a tan.  The only things I have are low blood pressure with almost fainting during my last illness, diarrhea which I've had for years, headaches, getting light headed when I get up or stand in one spot.  I do not have the skin color changes, weight loss, weakness, fatigue, joint/muscle pain or any number of other things that are symptoms.  ahhh...i'm just scared it all.  thanks a lot for the hand holding :)

[rumpled]

The below normal sodium helps the doctor diagnose. It should also mean that your doctor has to consider florinef (fludrocortisone) to help you retain sodium. How was your potassium? In a typical scenario - sodium drops and potassium (K) spikes during a crisis - in some of us both drop. If you spike, you have to avoid potassium when you are sick.

I also use salt tablets. I like sea salt as it tastes better - I carry it around (and the tablets) in a nalgene bottle and salt my food.

When you are sick - eat pickles, olives, chips, ramen or whatever you can to up your salt - salty soup cubes etc. I keep all that stuff in the house. Since I drop in K too - I use tomato juice to help as well.

So you need to get copies of your tests. It is natural to feel scared. I had my adrenals removed and I was terrified that I was going to drop dead in a month. It takes a while to learn to manage this and learn your new body but once you do, you learn your own signs (or in my case, my husband says uh, you need meds! I get confused and sometimes so confused I cannot figure it out!) and head off problems. It is part art, part science so you have to muddle through it a bit then it will become part of your routine. Just make sure you have the meds you need and salt around.

[dagosto]

thanks again!  My partner is a physician...a rheumatologist and he tells me to quit worrying already!!!  Easy to say :) I am aware that I need to have more information on what the problem is but, I just can't let stuff go the way he does.  Once I know what I face I will be better able to cope I think.  Your comment about your husband telling you sometimes when you maybe aren't aware that things are not as they should be....that is good information for me to have as this picture unfolds for me.  I most appreciate your time to write.  Thank you :)

[rumpled]

The rheumy is not living it. I can tell you from experience it is scary to live in this body at first - it is all brand new and foreign. You have to learn it. Yeah, there are a lot of horror stories but the point is to learn enough and have to tools on hand to avoid all that.

Everyone that I know is slightly different in crisis. I get a horrid headache and super confused. I burp a lot. Others just go quickly into nausea and vomiting. My BP drops - others can have a rise. The point is something changes and you have to learn your signs. They may not be what you expect. I had a crisis in a hospital and a resident stated steadfastly [stupidly] that I was NOT having an adrenal crisis - dude with no adrenals any time I get sick anything is an adrenal crisis - so treating me for a heart issues, low K, Na, Mg, WBC, RBC etc. and a 103.5 fever - they refused to give me steroids and I almost died. That is actually the hardest part! I had on a medic alert bracelet, a letter from my treating doctor outlining treatment in case of fever or illness AND I had a neuro-endo at that hospital that they refused to page - so some just don't get it so you must have someone that can push when you are at your lowest. So feel free to educate people on how to give you the shot, and know where your spare pills are.

[dagosto]

yikes!  yikes!  yikes! YIKES!!!!  What a horrible story!  What an idiot you were dealing with :(  I know they are out there.  I just got my labs in the mail today.  When I had these done I was feeling really great and the time of low blood pressure, fever, nearly passing out every time I stood in one place, headaches etc were gone.  My cortisol was 0.7 my partner says this number comes from both the urine and the blood test or I may have misunderstood what he was saying.  My sodium was 137 and it had been 135.  My potassium says normal at 4.1 hmmm....I need to look back at bloodwork taken when I was actually sick and see what the potassium was then...my C reactive protein took a nose dive from 6.8 to less than 0.5 which seems like a good thing...the only other abnormal numbers are albumin 51.7...haven't a clue what that is...and beta 2 and gamma.  So, I'm going to look around and see if there is some reference for me to look at that talks about the numbers altho from what you are saying it sounds like things may vary from person to person.  I just want to get the appt with the endo and find out what the game plan is.  I just would really like to know what I'm dealing with here.  Thanks again for the feedback.  I'm unsettled by the treatment you received :(

[rumpled]

Serum cortisol is a blood test. Urinary free cortisol is a free cortisol test or there are also saliva tests.

That potassium I think was normal, but at the higher end of the range? Albumin is liver test. High means dehydration.

Not sure about the others. I have a site in the health pages that is good otherwise a search engine.

I have had a couple of bad experiences, but good as well. Oddly, the bad was at a top rated hospital (I think the resident was cocky) and good ones where the docs were very cautious as they had a better idea about what could happen and were overly cautious. BTW the next day I finally got the endo I had seen before and I was so sick instead of 100mg she gave me 250mg and I had to stay in the dang hospital 3 more days... and I went in for a treatment to boost my immune system. Hah!

[dagosto]

I met today with the endo doc.  I REALLY like him.  He listened carefully and will be doing the test in the morning where I get a blood draw then an injection then back to the lab for two more blood draws at different times.  He said I'm symptomatic for Addison's however many other things can cause my symptoms too.  sigh.  well I am glad this should give us some answers at least.

[dagosto]

I'd like your take on something.  This morning I woke up with a brutal headache.  The kind that moves on into making me sick.  Drank water so my veins would be stickable so I wasn't dehydrated.  I had one draw in the lab as a baseline then went to the endo clinic and got my injection then back to the lab to wait for the second draw.  My headache was really awful and I was thinking I might have to ask to take something. About half an hour after my injection the headache started to ease and by now, a couple of hours later it's almost all gone.  Does this say something about whatever the injection caused to happen?  I'm thinking it does just not sure what.  If you have any thoughts I'd appreciate them.  Oh, I had a total of four draws...the baseline then three more at 30 minute intervals after the injection.  Thanks.

[kevieb]

Rumpled--i know I've asked you alot of questioned and you've done your best to help me--and you do a great job!  Dagasto,  reading through this thread you started got me thining a little bit about potassium and sodium levels.  i k now that mine fall in the "lab ranges"--but it seems like the last time they were tested, they were right near the limits of being flagged as abnormal--a point or two off.

i do not get salt cravings--but I have no appetite, either.  I also can feel almost parched in the mouth---and not feel thirsty.   i can hardly even remember what it feels like to feel hungry or thirsty.

The only time i get the munchies, is late in the evening--and sometimes late in the evening I will want to drink alot right before I go to bed----it is almost as if my body just isn't sending out the signals to tell me to give my body what it needs.  

Is this even possible?  Could this be why i get so easily upset and agitated as the day goes on?  Do you think it might help If I just forced myself to drink a V8 or something when i am feeling irritable?

Dagosto, I was diagnosed with SAI with a ACTH stim test several years ago and hypothyroidism----I had lost a BUNCH of weight for no real apparent reason before I was diagnosed---i assume it had something to do with the adrenals being so low.

An insteresting thing I have noticed, is that I seem to get nauseated really easy lately---I've been under alot of stress with holidays and surgeries.   I find that quite often eating salty potato chips with cottage cheese in the evening seems to settle my stomach----potato chips used to always make me feel a little queasy if I ate too many when I was a teenager.

What do you gals make of this?

[dagosto]

what I make of it kevieb you could fit in the end of a thimble :(  I am just trying to learn as much as I can as quickly as I can.  I hope when my test results are back I will have a few answers.  I've gained not lost weight however, I think I eat to try and get some energy.  I don't crave salt however, I do really want to drink before I go to bed just like you.  I'm not thirsty the rest of the time but when I wake up in the morning my mouth is very, very dry.  My sodium was at the cut off for normal low but my potassium seems ok.  I think these problems are so very complex!

[rumpled]

The injection was probably an ACTH stim - so it made your adrenals works and you were probably low (I get vile headaches when low) and the stim agent gave you the cortisol you needed - my guess.

Sodium should only be low if you sick.

Kev - I eat salty stuff when I am nauseous too - when you are low you need the salt then, not all the time. Not sure about the dry mouth - I get that from my meds. I find I don't handle changes well - I get irritates easily.

[kevieb]

just no way it's ever going to be easy, is there......