Welcome to our group. If you read the older posts you'll learn a lot about this disease.

How are you dosing your steroids? That can help with the fatigue.

I've had the fatigue now 18 years. I'm sorta good on some days but spent all day in bed yesterday. Some people are good on the steroids, most have some problems getting back to their old life. I did work the first 14 years after being Dx'd. I got other autoimmune diseases and am now on disability.

If you can be active you will feel better. I walk and swim. When I'm really fatigued I just walk my backyard, then walk my block, eventually working up to walking the park. Even being in bed yesterday I walked the backyard multiple times. I also only do small chores around the house, nothing to tiring. It does make me crazy that I'm unable to do what I want. Listen to what your body is telling you.

Education is the key to living with this disease. Ask any questions you have, someone will help you. Good luck.

Thank you 22 Lynn.

I have found out from blood tests that my pituitary is not working, so had an MRI on it today. Also more blood tests tomorrow.

I am wondering how long it takes to start feeling return of energy after you start treatment. My Dr told me to increase my medication to 50mg today to see how I go. Maybe this is normal when starting treatment?

How are you dosing your 50 mg through out the day? How much, and when?

Your now on a stress dose for your daily dose at 50 mg. It does take quite a bit of time to get your energy back. I wouldn't feel comfortable being on that dose for a really extended period of time since you already have diabetes. I've been pre-diabetic now 8 years.

I'm guessing they are testing you for thyroid, or have they already done that? Hypothyroidism causes extreme fatigue too. I was Dx'd with both at the same time. It's not uncommon. But if you do have a thyroid problem and it goes untreated both diseases get worse. Endo's are suppose to test for both at the same time.

Two more things that could be causing you to be so tired is your vitamin D and B vitamins are low. That is done with a blood test to see where you are. Possibly iron too.

The web site Jen mentioned is great. Someone from New Zealand belongs to this group. If you want I'll message their name to you.

thanks for your reply 22Lyn and JenCG
I have had an MRI and blood tests for pituitary, thyroid etc, a few days ago and am waiting on the results.
I do take Vit D as I was deficient a while back, and my ferritin levels had also dropped so I was heading for anaemia also.
Now it is 19 days since I had an adrenal sufficiency crisis that landed me in the ER, and about 14 days since diagnosis was confirmed with all the tests.

Maybe because I had taken such a dive, is why I am still feeling so fatigued. I was still having diarrhoea and tummy pains, so my Doc upped my dose to 37.5 in the morning, and 25 at lunch. The pain and diarrhoea stopped. She said she would wean me off it slowly, but I guess I am still waiting to hear about all the tests. She did say depending on the tests, I may have to go into hospital to sort some things out.

But, this fatigue is so frustrating. I only feel a little better, not a lot better, which is what I thought would happen. Feel like death walking!! (almost)

I know how you feel. I was diagnosed late December and I'm waiting to feel better, too. It's been 4 months and I still don't feel like my old self . I'm starting to find out out that there usually is something else going on with your body if you don't start to feel better on the steroids .
They figured out I have sleep apnea and insomia . They did a sleep study and I'm only getting 2.5 hours of sleep. Of course , most people would feel wiped out.
I think every person is different when they start to feel better , my doctors said right away if it's just your Addison's and not something else going on with your body that is off.

Hi dieselheimer,
I hope are feeling better by now, but if not...make sure they have checked your Sodium levels. If you have Primary Addison's Disease, you probably also need to be taking something to supplement that, a Corticosteroid. When I was first diagnosed, they had to wait almost a week for those labs to come back so I was only on HC for a week and it was like being on a roller coaster. Plus, I was eating every salty thing in sight because I was needing it so badly. Good luck!

Hi everyone,

Sorry I've been quiet, but I have been back in hospital. My asthma flared really badly and I was in until yesterday, two weeks. Still unwell, and having the Addisons doesn't make it any easier.
I am diagnosed SAI, due to pituitary switching off because of all the steroids and inhalers I have had to take for asthma over the years. I will be back in hospital once i stabilise for further testing on my pituitary.

So, I hang in there for now. My diabetes was also brought on 2 years ago because of the steroids, and it is flared at the moment and I am on insulin. Hoping the insulin is just a temporary thing and will go back to normal once I am off high doses and back on normal doses of cortisone. I was on tablet medication prior to this. The injections surprised me though, they don't hurt.

Trying to keep positive and just know that I have to ride through this one. I am lucky I have a good husband and son, who help around the house. My son did a big grocery shop for me this morning as there was nothing in the house to eat! Husband does not do cooking but great in every other way. Will do a simple meal tonight.

cheers all. x

God bless u sweetie, I hope u start feeling better soon. I took a lot of celestone shots and medrol dose packs for chronic sinus infections which had a big part of adrenal problems too, I'm glad u have help at home, for u. Darla

Thanks Darla. I am getting there, still so lethargic. When I am more stabilised I am going back into hospital for a full day cortisol curve test, so my endo can work out an ideal regime of medication for me.

Sounds like a good idea to me. She said I probably won't be well for quite a while yet.

We hang in there hey. Good luck to all of you too.

Ur welcome, sounds interesting, never heard of that, well keep us posted, sometimes I wonder how much my endo knows, he never offered any kind of test like that, plus I've had low fluid volume for over a year now with chest pain which he has not addressed, sometimes I feel like I'm on my own with all this mess., had to get that off my chest lol, hope u feel better soon, God bless

She was telling me that some patients metabolise their cortisol more quickly than others and that it happens through the liver. She said by doing this test they will see how I use cortisol throughout the whole day and then she can better taylor a regime for me. Makes a lot of sense to me.

It sounds like you got a really good doctor. The curve test and getting your steroid doses at the right time of the day should help. But like someone said, there can be other autoimmune diseases you have that are not dx'd. That is what happened to me. I have to many conditions to not feel fatigued now. It took 10 years to finally get my last diagnosis.

Wishing you the best on your test.

Thanks Lynn, early days. :)