There are newly and undiagnosed patients reading this forum on a daily basis, so, I would like for those with more experience with this disease to give what they feel is the best advice they have to offer.

Please remember how it was for you in the beginning...draw from that time.

From my perspective I'd emphasize proper testing. I know that when you have been given steroids it will complicate the issue as most doctors assume you are secondary. Well, maybe not, but without the proper tests it is very hard to get help. Ask for the ACTH stimulation test first off. There are others but this one is the best diagnostic test for AI.

Advice is something that doesn't always fit neatly into a package most of the time. I have learned through my experience that Primary Addison's is a difficult thing to get diagnosed. I was told by a surgeon who did his residency at Mayo in Rochester that 1 person out of 100,000 people who pass through the doors of Mayo Clinic has Addison's. I probably had been adrenally challenged long before I was diagnosed. I mean years, however It took from January to late July before my symptoms were bad enough to have my family doc suggest the Cleveland Clinic Endocrinology chief of staff. He injected me a couple days after he ran routine tests for AD, and told me he almost started treatment the day he first saw me. I learned the basics about self care from him. If you are going on vacation or out of town and forget your meds, turn around and go home to get them. It's always better to err on the side of too much replacement than too little. The third and probably the most important was that I would hear all kinds of tales about taking cortisone the rest of my life--his eye got big and he told me to always remember what he said and not listen to anyone else. Remembering this, I have needed to use it even on endo's who have crossed my path. Personally I haven't seen one that could ever hold a candle to Dr. Schumacher, now deceased.

My symptoms were vivid from June to the end of July. They were nausea, vomiting, weight loss (40#) malaise, salt craving, severe pain, especially in the abdominal area, dizziness and weakness. I could hardly walk.

I think the best place to find a good endo is a teaching hospital like Mayo, John's Hopkins or Cleveland, or if you're lucky, you might find a doctor locally who will listen to you and be able to make a diagnosis. We are a lot tougher than we give ourselves credit for being, and I'd say the vast majority of us make it through "Diagnosis ****".

Blessings,

Don't ever give up!! Find a doctor that will listen to you and do the proper testing. I am thinking a hospital may be the ones who could do these tests correctly. It is very easy to mess them up. I lost around 40#, pigmentation, dizzy when standing, terrible terrible stomach pain and just felt like I was dying. I went to the emergency room 5 nights in a row because I felt like I was dying. The good news was every night I saw the same young doctor. On the 5th night he finally figured it out. He figured it out after he had sent me home that night. He called about 1am and told me he should have never let me go home. To see my doctor immediately the next day. My doctor put me in the hospital and called an endo. I was in the hospital for 5 days while doing all the testing. Don't ever give up!! (grh)

Hmmm, be educated as to what the proper testing involves and why. Be aware that certain tests availabe on the internet are not recognised in some countries. Be proactive, ask questions, take lists and pen and paper with you, don't be frightened to ask the dr to write down any information or to explain things to you.

If a dr is not prepared to listen to you, change dr's, your health is important, you cannot work with a dr for maximum benefit if he does not listen. If you feel that they are going in a different direction to what you thought, ask why these tests are being done, what are they looking at and why, don't get upset, get understanding, this helps to build a good relationship with the dr and also lets them know that you want information and expect it.

I agree with what all the others posted, also if you feel that addisons fits best but you pass a normal stim test, ask if a low dose stim test can be done...it can't in some countries but it can show up more borderline cases. Passing a stim does not necessarily rule out addisons, 95% of the adrenals need to be destroyed before it can be proven, this is why it can take years for it to be dx'd according to our endo.

I too was also misdiagnosed for years. Everything was blamed on my Crohns, or allergies (which I don't have) and of course the occasional doctor that looked at me like I was making everything up. It took an ER visit and a 5 day stay in the hospital to find out what was wrong. They took so much blood out of me I'm surprised I walked out of there. Colonoscopy, Endoscopty, MRI, CT scan....blah blah blah. And guess who figured it all out? My GASTRO DOC!! I did start steroids right away but it took me a long time to find the right doc and to understand this disease myself. I think the most important thing is that YOU know what is going on with YOU and to be firm with your doctors when they hem and haw and disagree with you. And when you feel that you have everything in order and as right as they can be with your meds.....BAM...something will change it all. I'm going on 7 years with all of this and am still not an expert on everything, you just keep learning. ;)
Maureen

I would tell newbees that they need to find a good doctor. I had been miserable for at least 9 months and my primary care dr. was of little value. He thought I needed and endo but made no effort to get me into one. I had to make all the arrangements and wait the 3-4 months for the apt. Once I got there she didn't believe I had Addisons so did not do aggressive testing. (I didn't get a tan despite my ACTH levels being sky high, thus she didn't catch on.) My husband and a friend kept begging me to go to the ER and I gave in one day. They diagnosed me in no time. I now have a wonderful doctor at a university hospital. I can ask him any crazy question and he keeps a good eye on my levels. He actually has about 7 patients with Addisons. My first endo had never had any. Rebecca

Rebecca, It took an ER visit and a hospital stay for them to figure out what was wrong with me too. All 3 endos I have seen had no other Addison's patients. I felt like I was educationg them! If you have a good one, stay with him! (grh)
Maureen

id like to echo, dont give up and dont be fobbed off. it took 9 months of going to the doctors every week with new symptoms. i asked him if they were all linked and was told NO. i lost about 4 stone, passed out several times, dizzyness, tiredness, pain, depression, low blood presure, very tanned. he said i was lazy and to go on a kabuzt in turkey :blink: . finaly he sat one day in his office reading a book, he looked up and said 'i dont know whats wrong with you', finaly (0). i was refered to my local hospital, the endo took one look at me, and said i know whats wrong with you, did the tests, started treatment within a week. the endo said hed have given me another month to live :o . my local doc could'nt do enough for me after that, i guess he learnt a valuable lesson too.

also dont be affraid to educate your local docs, mine are keen to take info from me. im their only patient, but they are willing to admit i probably know more about addisons than they do, but they want to learn about addisons. docs definately dont know best.

goodluck

terry (UK)

I agree w/ everyone else - Find a good Doc - even if he or she IS NOT an ENDO but is willing to Learn & Experiment w/ you.

Just out of curiousity, Rebecca are you in the US? What state?

I would KILL to find an Endo or Doc really familiar w/ Addisons within a one day drive or less - as I have NO savings & no ability to travel distances, stay in Hotels etc. Would have to be in the Greater NYC Metro area for me to be able to do it.

I wish I had this information before I was diagnosed,for 3 years I went untreated. I appreciate this forum, and hope I can Help someone in the future. Thanks for welcoming me. l1wv

I know I am new here, but I hope my posting here is ok..

My advice too anyone who takes the time too read these, and I hppe they do.. They could save your life... Fist and formost.. You are you OWN HEALTH ADVOCATE.. you know your body better then anyone ever will. You know what feels right, and what does not. If you find yourself with a doc who will not lsiten, my advice too use is Look and search and keep doing this UNTIL you find one who listens. I spent alot of time, energy, my hubbies vacation time, and traveling too get the docs I have today. Took my 16 months, and thank god I am still alive today too speak of this.
Always.. ALWAYS.. get copies of everything you have done.. Blood work, CT scans, MRI.. anything,, anything you ever have done. Keep a detailed file or joural of your med records..
Also.. If you are given a script for labs.. Like one said here.. read about that test before having it done. It is rare you are told exactly how it is done, or how it should be done too get a PROPER read on labs.. UGH, I am learning this the hard way. So research anything they want too do on you.. Learn the pro'd & con's of everything..you always want too know the bad with the good..
I think A great support system is really important. A place where you are not labeled as severely depressed * which I was labeled *, and am NOT..
Read, learn and question everything ! Also having others dealing with this issue is such a soft place too fall! They can relate and support in so many ways!

Good Luck, and Great Health too anyone who reads these notes :)

If you are new to the disease and new to this forum,please follow the advice above.
One should also realize that if you take care of yourself you can live a fairly normal,healthy,and happy life.
Dont be ashamed of having Addisons and educate those who are around you the most. In the event of a crisis its nice if your friends and family are educated on the disease.
If your like I was,the first few months on meds will be a trying time for you and those around you.Keep that chin up as it will get better and soon you will be felling great!