You can get steroid "rage" or I think you are having steroid "anger/stress". Some steroids do change your personality, not for the better.

There is always prednisone too as an option. It lasts longer than HC but shorter than dex. Some people have their doctors prescribe pred in the am and HC in the afternoon to get a better result. I've never been able to sleep on higher doses of pred but I'm thinking of asking my doctor for this combo for other reasons. But I'm hoping it helps my fatigue.

I would definitely make a doctor appt. They take forever to call back and probably will not change meds over the phone for your symptoms. Good luck.

I think we discussed this before, but 15 mg is a teen dose of HC. I'm sure you were tire. I'm tired on 30 mg a day. It just doesn't replace the cortisol like it should. Although some people do go on to a somewhat normal life. Lucky people!

Lynn,
My endo is willing to put me on 20 mg. of HC. 15 mg. to be taken in the morning and 5mg. in the afternoon. I'm not feeling too positive this will work . I've been on HC before and felt very weak and fatigued.
I don't understand what doctors or other people don't get about this disease; it is very life changing. I feel like I have a new normal of having no energy and it is making me depressed . Yes, I've talked to a psychriatrists and she wanted to put me on Sereoquel to calm the "roid" rage. I'm not psychoic , I am having a heck of a time adjusting to a life of steroids. I wish the doctors could feel what we're feeling so they could be more understanding. So, I'm supose to take a "new" medicine with more side effects just to take steroids and have a "somewhat" normal life.
I know we discussed it before but three endos don't seem to think15mg is a teen dose of HC. That just blows my mind. I know I'm on the small side 112 lbs. , but they still don't see it. They say my body's replacement dose is 15 mg. What about stressful days which seem to be like everyday? Wouldn't my body make more 15 mg.?
I had an in-grown toenail surgically removed recently, so I had to stress dose and I did for three days . I got a bad yeast infection my endo said from stress dosing so now she only wants me to double my steroids instead of triple it when I get sick. Can you believe it?
Thank you for letting me vent . I am so frustrated. It's nice to have someone to talk to that knows what your going through.

Lynn,
Will I ever feel like my old self; normal again? Is my body healing or is this my new normal?

Hi, I'm sorry ur having to go thru this mess. I was in a guess u would call it a pre crisis last summer and despite increasing Cortef I was still having trouble so my Internist gave me dex. I didn't feel good on it at all. Went to a endo. Who blew me off despite my symptoms and told me I all I should need is 20 mg of Cortef a day, well I've tried to decrease it but 25 mg is as low as I could go and still have some symptoms. Some of these endo's r thinking we can functioned on that and most can't. R u on Florinef as well? I've been told Cortef last 4 hrs so taking Cortef only twice a day I don't think is appropriate. What time do u usually take in the morning? I think u would feel better if u could increase Cortef and take it 3 times a day that's how most take it. I stay exhausted as well but I'm fighting chronic Lyme disease and Bartonella can't seem to get endo to understand this. I hope u can find a Dr that will work with u. My internist gives me 30 mg a day so she helps me out thank God, sounds like u been to several already, I feel for u, I hope u start feeling better

Hi, I'm sorry to be so late in replying but I got logged out of DS for a few days. Password problems.

Will you ever be normal again? No one really knows. You haven't been Dx'd for very long and are still trying to find a med that works for you. Most of us are not normal again and have to learn live a new life. With this disease, it's just so overwhelming, I went through the different stages of grief you go through when someone dies. I did see a therapist for awhile, that helped. I'm going back since I've had some changes after 18 years of Addison's.

Feel free to vent here anytime. I've never taken Sereoquel. But I do take Lexapro for depression and Klonopin for anxiety. I get anxiety sometimes with the Addison's, it's a stress hormone that were missing and if I use up my HC to fast I'll get anxiety about events. I also practice deep breathing right at the moment I'm having the anxiety, and walk everyday. Walking seems to help me the most.

Most doctors don't get it. They think we can just replace the cortisol with steroids. But the steroids are not a perfect fit if you ask me. But I am thankful to have them and be alive. My GI doctor has just been Dx'd with this in the last year. She can't believe how different she feels. She's helped me get through some very hard times when I was sick.

If your having any other symptoms maybe we can help you with that. I'm going to google about your steroid and mood changes. If I find something I'll re paste it here.

Thanks Lynn and Darla,

I'm back on the HC and not feeling too great. The Dex made me feel crazy with severe mood swings, anxious , anxiety and flipping out at everyone in my family for the slightest thing , a terrible yeast infection with sores in my mouth.

It's been 2.5 months now since I've been diagnosed and I have yet to get a full night 's sleep even though before bed I take ; Xanax, 4 mg. of Klononpin and Ambien ER 12.5. I wake up a lot . Anywhere's form 3-5x's and it takes me a long while to fall back to sleep. I'm going in for a sleep study on Thursday but we all know it's the steroids.

I also look the same on the outside but don't feel the same on the inside. I am depression, exhausted with no enthusiasm for life. The things that used to make me happy don't anymore . My daughter asked what I want for my birthday Wedensday and I told her I don't want to have Addison's anymore.

I'm seeing a therapist and psychiatrist for the disease and they don't get it. One hands me brochures like their going to change my life if I read them.

My docotor doesn't seem to think I need flonief.

I also notice I use up th HC too fast , I take a Xanax but my psychiastrist will only give me one a day.

I am so sad and torn , my daughter is having a Girl Scout field trip to Disneyland in August and I was so looking forward to it . Now, I don't think I'll be able to handle all the stress and running after the kids . Help, I'm a 45 year women trapped in a 70 year old body. Would you bow out as a chaperone knowing how shitty I feel and how quickly we go through our HC?

Hi, I'm so sorry, I missed a lot with my son and still do, and it's hard to go thru. I keep hoping and praying for better days. So I understand how u feel. Do u take probiotics? If not I would recommend that to help prevent yeast. R u on thyroid meds too? So ur on 20 mg of Cortef a day now? Most with AD need 30mg of Cortef daily, I wish ur endo would give u more just to c if that would help. I stay tired but when my cortisol is low I'm lethargic and can't get off sofa def different. Hang in there, hope u feel better. Prayers for u

Yes, Darla I'm getting yeast infections and white sores in my mouth. They both hurt a lot and are due to taking HC or Dex because I've recently been switching back and forth.
It's not like I can stop the HC so what do I take to stop this from happening?

I'm sorry that your having such a hard time. This is a really crappy disease to get and to try to get your life back to some kind of normal. 2 1/2 months is a really short time to try to get your doses right, etc. it took me a few years.

If you aren't on something for depression I would talk to your doctor about getting an antidepressant. I take one. Chronic illness causes depression. It will get better.

Are you really taking 4 mg of Klonopin at bedtime or spread out during the day? I've had lots of problems sleeping too. I've found I can't sleep if I haven't exercised or been physical no matter how bad I feel. I only walk or swim now. I take one hour before I want to sleep: 2 Benadryl, 1 mg of Klonopin, 1 melatonin, and 2 Advil PM. I've slept through the last 3 nights. But it is crap shoot if I will sleep through or wake up at 3-4 and be up the rest of the day. Sometimes I get back to sleep. It took sometime to figure out what worked for me. Exercise, walking just a little, really helps.

My GI doctor was Dx'd this last year with Addison's. She asked me last month if I felt dead inside since being Dx'd. She feels that way and doesn't understand what has happened to her and she is a doctor. I do feel sorta dead, very blah, no highs, no lows. I think it is the hormones being off.

If you really want to go with your daughter to Disneyland the only way to get through a day like that and survive would be to stress dose a few days before. The day of the trip I would do an injection and then do oral steroids if I needed them as the day went on, or a second shot. Also keep really hydrated. Are you on Fludrocortisone ? If not make sure you eat salt that day to keep your BP up if you feel dizzy. I almost missed my older sons high school graduation, and ruined the lunch afterwards. This is my new normal.

If your having candida the doctor can give you something that will clear it up. The steroids cause it to flourish. If the doctor won't give you the prescription drug you can go on Vitacost. They have two things that clear this up. Oregano Oil Extract and Grapefruit Seed Extract. They come in pills. They have cleared up my candida several times. Google it, you want to cut certain things out of your diet to really get a good result. To get rid of sores in my mouth I take l-Lysine, an amino acid.

Now that I've written a small book, lol, I hope this helps. Don't give up. It really does take time to feel better. Keep asking questions. Hugs.

Lynn,
I know how you feel . I do feel dead inside no highs or lows. All sadness and depression. No happiness. Do you still feel dead inside? That will tell me I need to take an antidepressant.
My husband has booked a trip to go to Maui for our 20Th wedding anniversary and I don't want to go because I know I won't be able to enjoy it ; feeling so fatigued and weak . That is so unlike me. I used to love life and get exctied over the small things. Right now nothing makes me happy. I am so weak and fatigued . I know I won't be able to do too much. Just writing back to you takes so much energy out of me.
Yes, I really take 4 mg of Klonopin to try to sleep, 1 Xanax and an ER 12.5 Ambien. I still wake up 3-5 times and have a hard time falling back to sleep most nights.
I don't underststand why I'm not on Fludocortisone. I crave salt like crazy. I think my doctors are crazy and don't understand how sick I am.
I also need to walk or excercise but right now I am too weak to. I used to run half marathons and was very physically active before my diagnosis. Now I can't even walk down the street without feeling very fatigued.
Thank you for the book . I cried reading it . I feel so alone that it felt nice that someone cared enough to take time out of their day to help me that is struggling so very much. Thank you.
My endo won't give me ANYTHING for my vaginal or mouth yeast infection. She said it's not her specialty . I said yeah, but you gave me the steroids that are causing the yeast infections.
My doctors are afraid to put me on antidepressants because I get 15 migraines a month and the SSRI"s can interfere with that. my psychiatrist suggested Serequel because of the severe mood swings of the steroids. I stupidly refused the suggestion.
Now I'm stuck with the depression ,anxiety and mood swings.

When thing I learned when I started taking care of my mother as she was dieing, and that was 9 months in ICU, is that I no longer take any crap at all from doctors or nurses! Caring for her caused the Addison's. Too much stress and undiagnosed celiac disease.

You will have to really stand up for yourself from now on, change doctors if they won't help you with your health problems, etc. Your family might have to do this if your to sick and in the hospital. But in 18 years that hasn't happened yet to me. I'm very nice, friendly, but firm with all my doctors. I keep educated on my illnesses so they respect my opinion.

I do feel dead inside. I hate it. Sad and depressed at times.

No matter how sick or tired I am I still walk. I'll start just walking my backyard multiple times a day, then up it to one block, then eventually around the park. Once I've gotten sick I start all over again with just the backyard. This does eventually give you some energy and helps with your sleep.

When my sleep got totally off I read on one of FB support groups that not having any cortisol can cause you interrupted sleep. I started taking 2.5 mg of HC at bedtime for about a month. It did get my sleep rhythm back. It was part of my daily dose. If your waking up that much of course your going to be even more tired. My guess is they will want to do a sleep study on you to rule out things like sleep apnea, etc.

As for traveling, like a trip to Hawaii, about 25% of us have trouble when we travel. Doctors don't know why, we don't understand either. It doesn't seem to matter if you go by car or plane. But for me, a plane is harder on me. I do think it's partially the stress of getting ready for the trip and getting out of my routine. Since getting this I don't handle stress very well. I start stress dosing, double steroids, 3 days before we travel. On the day of travel I do an injection and oral steroids. If I'm flying I do the injection right before we leave for the airport. I've had a crisis on two trips, one I told my husband I was to sick to go on. I should have been more forceful and not gone. The other was a complete surprise, but I didn't end up in the hospital. We just came home the very next day. If your really not feeling good right now I would try and bargain with your husband to put off the trip for 6-12 months. My husband didn't really understand until he was Dx'd with Parkinson's.

They didn't put me on Fludrocortisone right away either. Keep up with the salt. Chicken broth like stuff is good for salt.

I have severe migraines, take multiple migraine meds, and have been on multiple antidepressants over the years. I know that there are some warnings between the meds but you can take them together. I have migraines everyday. Another side effect of low cortisol.

I'm sorry it made you cry. :( I know I cried yesterday. It does just get to be too much at times. Sending you (((hugs))).

Like you, I use to love to do physical things. I'm sure that you miss that a lot. Running a half marathon is a big deal. I use to ride my bike 100 miles a week for fun.

Hi, probiotics will help prevent the yeast infection. I take gobs of them due to antibiotics I'm on. I take natures plus max strength probiotics I order from vitocost, I also order cheaper one and take those too. Not sure what ur diet consist of but low sugar and carbs will help prevent yeast growing as well cause it feeds off sugar and cause yeast to grow. As for as getting rid of the yeast infection ( maybe u have already) diflucan works well and a nystatin wash for ur mouth ur Dr can prescribe that. Unless u chose the natural products Lynn mentioned. Best wishes to u

One more thought, take more then what the bottle says, it won't hurt u only help