Florinef is part of the protocol for Addisons. He's not on it? You've got to be on it to get the correct sodium and potassium balance. Isn't his blood pressure too low without it? Well, he might not have low blood pressure since he's on a unusually hefty dose of Cortisol. They started him at 40mg?! I'm on 20mg and 1.0 Florinef.

I've never slowed down with the Addisons. I work 6 days a week, standing on my feet but my job isn't physical at all . Honestly, I don't feel as good as I did before 2007 when this started. I was a VERY hyper person for 43 years and felt like Superman:) I had the energy of 3 people before the Addisons:) Now I feel like a mortal instead of a superhero.

Ever since 2007, I've noticed if I sit down for very long, I get weaker and weaker and feel sluggish and tired. It almost feels like Ive come down with the Flu! If I force myself to get up, that feeling goes away within a couple minutes of moving around. I still struggle with that on my days off. If I read a book for 2 hours, I have to force myself to get up and go make coffee and get my butt in gear. I just walk around and sip my coffee and my body always returns to normal energy levels.

All I can suggest is to not wait for an energy surge to come upon you when you are resting on the couch. It's never going to happen. But if you get up and get moving, the tiredness and weakness goes away 100% within minutes, once you are on the adrenal meds. You might not feel as good as your pre-Addison self but the alternative is worse. If you keep laying there, you turn into a zombie with no physical energy or mental acuity. At least I do LOL!

Good luck and I hope he finds a way to become functional again. I'm sorry he is having such a hard time with this.

Lori

Thanks Lori! I am glad to know you are able to manage the Addisons so well.
He was put on such a large dose because he was so bad before he was diagnosed. We were told that his soduim and potassim were fine but I will go back and double check the records . His blood pressure has bordered on high since the treatment started. He is not gaining weight,but he has lost all his muscles.
He WAS superman before all this started. You know, the kind of tough guy that never goes to the doctor, cut off their own casts when they break a bone, don't use pain meds after back surgery, that work no matter what.

His work is very physical. He was flipping a house when this was hitting him. He did literally all the work himself. He is still able to preach on Sundays. All other days he goes to his shop and tries. Some days he is back in the house in 30 minutes . Some days he can go for 2 hours, but it isn't his real work. After a little rest he gets up and tries again. Up and down, all day long. When he comes in he is too tired to get a drink or even watch tv. He just lays there. After he preaches on Sunday, he is done for the day. He has not had a normal energy level ,for 5 minutes in 2 years at least. It just does not happen.

Your experience helps me have pespective. Since he is trying this hard and still so bad, we have to keep looking for answers!
I will press them on the Flourinef.
Thanks for your suggestion.

I believe in Natural Solutions.Sometimes we need the help of other things but a natural solution that helps many times is EFT--Emotional Freedom technique. Google it and read up on it. Anyone can do it. If it does not work for you, try different wording. It will never harm. Sometimes sunconsiously we think we are responsible for things that happen to others because of whtever our mind invents. This technique will help solve tht.

'As far as I know, Addison's Disease's RXs are forever....ask your doctor, though.
I was diagnosed in 2005(after 3 incidents & 3 hospitalizationsz). The correct diagnosis, literally, saved my life.
It may help to go online and find out more about Addison's Disease.
For me? I have to be diligent. If I am in a "crisis," I call my wonderful Doctor Eric...and we talk. It includes getting a cold up to an ER visit.
Good luck. Take care.
Franciann

brutusmom,
Sorry to hear about your daughter's problems, and all the stress it is causing you and your husband. Sorry to hear that your husband is not getting better. Are they certain of the Addison's diagnosis? You did not say how that came about. Does he have any other health problems? Is he taking any other medications? I just suspect there is more to the picture than you gave us so far, and that clues may lay there. He does not sound like your 'typical' Addison's patient. Has he tried stress dosing when there are crises with your daughter? He may well need DHEA. I know I don't make any. I take it, but don't notice anything from it really. I also take a tiny dose of progesterone as I don't make any of that either (normal males do). He may or may not need florinef, depending on the cause of his disease and his body's response to the hydrocortisone. He may do better on a different chemical formulation of the cortisol replacement - again, depends where in the chemical chain his malfunction is. Hydrocortisone is the closest drug to our natural cortisol, but coming to us through the GI tract is different than getting secreted by our glands, so you just never know. I take a combination of hydrocortisone and prednisone - but I have to say I struggle to keep functioning. I am doing better than him at the moment however, I am able to work full time. Is he eating well? Is he depressed? Has his thyroid been checked? Has his testosterone level been checked? There are so many questions........ Vitamin D level? What is his sleep like? What kind of doctor does he see? How is his BP? What kind of preaching does he do?
In any case, I hope that he feels better, and soon.

Vanyel

Hi brutusmom,
Just when I was going to post, I read Vanyel's post and it said so many of the things that I was going to say/ask.

From my personal experience with Addison's Disease it can be very individualized, not that everyone here doesn't have wonderful suggestions and advice. I'm only saying that because, for example in the beginning, I thought I needed to be on Florinef too but that wasn't the case for my specific needs. Addison's can be primary or secondary, well, I guess secondary is more insufficiency, however then it also helps to know the source of the problem too like is it from the Pituitary Gland, etc... (this information can come from testing like the Cortisol Stim Test - was your husband diagnosed by this?) I too, like Vanyel take a combination of Hydrocort and Prednisone but I haven't always. I was at first just put on Hydrocort 25mg split in 3 doses. However I have a whole host of other medical challenges that have been discovered in addition with the Addison's Disease, Hypothyroidism being one of them and I did not take it as seriously as I should have at the beginning. Nor did I realize how hard it is to balance Addison's with other complex issues. Especially with your daughter's diagnoses and since thyroid can possibly run in families, it may be very important that he have/find an endocrinologist who will look into many aspects of his health. And I have found in my own experience again that it's so important to find a doc who has an open mind, for example when looking at his thyroid, look at T3, and T4 not just TSH and be flexible with the "ranges" but you may already experience this with your daughter.

I wish and hope the best for you. You're on the right track with NEVER give up looking and him too! My advice might be to keep him as involved as possible too so he doesn't lose hope in his own treatment. Sometimes just forraging on to that next possibility of more energy is what keeps me going and gives me that "umph" to keep digging for what I might need. But know that your support for what he is going through means more than anything!!!!!
Good luck!
Cosby :)

I took Hydrocortisone for 3 years, never felt better at all. I was recently changed to Prednisone and feel like a new person. I PRAY it lasts. I take Flourinef .1 twice daily now and from my understanding if you have Primary Adrenal Insuffiency you take Florinef no matter what. Just because his lytes are ok now, doesn't mean they will be down the road. I had a hard time tolerating Florinef to begin with so I said to heck with it, I didn't take it. Ended up with a 6.3 Potassium and could have died.