Addison's Disease Support Group

Jeep,
I too get an assortment of weird symptoms that I can't pin down to anything. I started with the heart palpitations over a year ago and they got so bad I really was alarmed. I went to the doc and he sent me for stress echo, which i flunked, then had nuclear stress test, which I flunked, then had stress adenosine MRI and cardiologist said there was nothing wrong with my heart. I am dubious. It still skips around like crazy despite a high dose of toprol, and it can't be good for it. I get periods of dizziness and vertigo, headaches, bad tremors in my hands and all my muscles especially if i'm tired or nervous - even my face will start to do it. It is horribly embarrassing. I sweat like there is no tomorrow - sweat every time I eat. I can't stand heat at all. My doc thinks these things are because my body is running on adrenalin because of the lack of cortisol and I get into an adrenalin overdrive. Its a theory. I don't know if I buy it.
Were you taking hydrocortisone when they did the 24 hr urine? If so, of course its high, you were taking it. If not, I find it difficult to understand why they would have you on it in the first place. The glucose is a whole nuther story. Are you diabetic? I don't think I recall that you are. Sadly, the steroids we take can make the glucose go up and the whole dang mess sets us up for becoming diabetic. I checked my glucose levels religiously for a couple weeks to see if there was something weird going on there and it would range from 70s in the morning to 170s after eating. More than normal swings. Generally, glucose is checked as a fasting level first thing in the morning and should be below 100. Diabetics usually check it before eating to adjust insulin doses. After eating all bets are off - they sometimes will check it 2 hours after eating, but it would be highly variable. Random spot checks are done like when you go to the ER. Bad diabetics usually check it first thing in the morning, before every meal, and at bedtime. 147 isn't too bad if you had eaten recently. Random glucose should be between 80 and 110 normally, but after eating it can go up to 130-140. Anyway, I ramble.
THe symptoms you mention could be related to the HC, it affects just about everything. But they are not the typical things you usually associate with HC side effects. Maybe something else is going on? Hard to know. There are just too many variables, and everything messes up everything else. Once you start playing with hormones it gets very confusing.

Vanyel

Hi vanyel. Thank you for you reply. When you started the heart palpitations, you were diagnosed already right? I ask because MINE started Mar 2007 ( I remember because I lost my dad that month), and i was in the ER a few time in a matter of a week or two. They put me on Toprol then too. I still have it but do not take it ( may hav eto restart). I was not even diagnosed with the pseudo tumor yet BUT I WAS put on thyroid medicine in Dec 2006 and now we are wondering if that triggered a lot of this stuff (including the eye).
I also had the stress test done not long ago ( with that new chemical that doesn;t make you feel all revved up! YEA for that stuff!) and that was ok...
Lately they came back and i would get them when I laid down like on the sofa, but then on the higher steroid dose recently I had them much more often and not just laying down. They seem to be subsiding again, and I am back down to 20/10/7.5 as of Thurs.
I don;t tremors ( the dr at Duke looked at my hands for that) but I do get tics..and in my face! I would get those when i first started the UGH dreaded prednisone back when this all started in Feb 2008. And on the higher HC doses the tics returned. Dizziness is an issue whenever it feels like it...
You said you can not stand heat..I found during all of this I would get very cold. I woul dcrank the a/c up to 80 and still feel cold.
Yes, I was on HC during that 24 hr urine test. I was on the 30/20 dose that the oncall dr had bumped me up to after I complained how sick I felt. So we expected the level to be somewhat high but well as high maybe not!
As for the blood sugras thank you for writing what you did about the 2 hours! Like i said I wrote a note to self and can not recall what it really meant! LOL UGH!
We had talked about checking sugars when I was hitting that 11AM wall at work..odd i don;t hit that wall that much these days ( sometimes I still do). But then again, my whole body clock is screwed up. I get up between 3-4 AM like today, everyday, and don;t really nap much ( I may lay down and doze but don;t really actually nap). I do go to bed at 8 and fall asleep between 8-9:30 give or take.
I really need to get this sleep issue under better control becuase the time change is like in a week or so and then I will be getting up at 2! I can not do that!
Due to this we have put off the sleep study all my drs want me to get. I will get one just will have to wait until I am on a more normal sleep schedule. And even then without the dog being there to wake me up it probably won;t be accurate! LOL
seems like the odd symptoms are getting a little better ( like i had said i also could have taken an extra effexor the other day..my memory is so bad right now that I forgot so I took one!)
I just know that since this all started, by taking that prednisone ( which i was started on 60 mg a day and then we attempted to taper me off quickly and here I am over a year and a half later not able to get off steroids!)my whole body has gone through some whacky stuff! when I was not feeling "right" I just felt like my whole system was acting up and remember thinking "If this is what diabetics feel like, man I feel sorry for them!" ( My dad was diabetic late in his life).
These steroids affect everything and make me feel good, too good, bad , really bad and horrible!
And yes, as you said, there are a lot of varied symptoms and I do have a complicated helath history and so it is hard to say what causes what and what aggravates what etc...
I just hope we can get me down off these doses with little or no horrible side effects ( one I already seem to be experiencing from the cuts we have already made, is pain in my right hand, esp in the joint by my pinky..it feels like I punched a wall).
Oh did I tell you I finally got the inj steroid? Solu cortef maybe? It comes in a rather cute little dual chambered bottle so you don;t have to mix stuff, you just open the two bottles and it mixes itself. They gave me 3 vials ( So i am NOT gonna buy that box of 100 syringes! My boss said he would give me some syringes! Good! Not that the box was pricey but I said "If I needed 100 injections I probably would be dead!" and do not need extra clutter!
I am not supposed to carry that in my purse right? I hope not! I have enough crap in there!
Ok have rambled long enough!
Hope you feel better today!

Jeep,
If you did take an extra effexor the other day, that could account for a lot of the symptoms you described. Glad things seem to be getting a bit better for you.
Thyroid was another thing I was going to mention and forgot. If your thyroid is too revved up you can get a lot of these symptoms too. I know my T3 tends to run high and I think that probably has a lot to do with some of my symptoms. If yours continue, you might have the doctor check your thyroid labs to see where you're at. I seem to be stabilizing a bit now that we put me back on synthroid.
As for being stuck on the steroids - I think that is what happened to me. My theory is that my adrenal functional was quite marginal to begin with, and when they put me on prednisone, they just up and quit. Now they won't recover. Maybe something similar happened to you. Hard to know, but that is my theory. I have always been a low energy person, and had poor stamina that worsened over the years until it became sheer exhaustion. Anyway, whatever the reason, the adrenals don't work now.
SLeep has always been a bad issue for me. I can't sleep. I don't seem to know how. I will lay there all night staring at the ceiling even when I'm exhausted. At this point, after going through all the shrinks and sleep studies and drugs and everything else, I kind of gave up and I take sleeping pills every night. I take Lunesta which seems to work well for me. It shuts off my brain and lets me go to sleep and keep sleeping for 6-8 hours, though I still often wake during the night. I go right back to sleep though. Its so frustrating its beyond description when I try to sleep without meds. Add to that I have always had a backward circadian rhythm - I like to be up nights and sleep days - and it gets totally screwed up. Then add to that that I worked 24 hour shifts for 5 years when I was flying and it becomes a hopeless mess. I am happy now to be on a regular schedule and hope my body will adjust to it. We shall see. For now, I take lunesta every night.

Vanyel

Vanyel, I just wanted to comment on your heart issues...I had the same symptoms last year and we figured out that it was because I was taking too much thyroid medicine (I have hypothyroid, also) and my doctor made the comment that this was making me burn through my cortisone too quickly. I didn't really understand it; but, the bottom line was that my heart was fine...it was just my body reacting to too much thyroid med. I hope your heart symptoms are better, now.

Lacy,
Thanks for the info. We keep a close watch on my thyroid and cortisol medications. My doc says that my lack of cortisol makes me convert too much of my T4 to T3, and I therefore have negligent levels of T4 and high T3 levels. To get this to correct I have to take too much steroid though, so we are now trying a different thyroid med. The heart symptoms persist though regardless. I'm sure it is not a primary heart problem - it is due to the endocrine issues. Doc says I run on adrenalin cause I don't have cortisol and I get all sorts of symptoms from that. Its a theory.

Vanyel

Well, that may explain my issues with my heart, too. I think I will show my doctor what your doctor is thinking. There is definitely something weird with my thyroid...one minute it is up and the next it is down...I need to ask what we are talking about T3 or T4...I've never asked. Thanks!