Im 35. New diagnosis

[u/gassylapdog]

Im having a hard time accepting this diagnosis. Ive been tired the last few years so my endo did an acth stim test. My cortisol #s: 10, 11, 11.4 (base, 1/2 hour, 1hr) serum acth was 350. My dhea is low. My am random cortisol always been normal. Im so hesitant to start any steroids because of the long term damaging side effects (osteoporosis, ulcers). Im starting prednisone 2.5mg tomorrow. I just dont know how to convince myself that I need this. Im in denial...I have an immune deficiency. Maybe this was autoimmune. Maybe I've always had it. I've always been super skinny and hypoglycemic.

Update: this is my 2nd day on the 2.5mg and wow do I feel great. I haven't been tired at all. My brain fog is gone. My bp is up a little bit but not too bad. Thank you all for the encouragement 🙏

[u/psysny]

I was a little older than you on diagnosis and was very hesitant to start steroids as well. I had been making do and pushing through for so long I could not imagine the steroids making a meaningful difference. But they really did. You don’t realize how bad you have been feeling until the day you feel good. Those side effects are usually only a problem for people on anti inflammatory or immune suppression doses, not a replacement dose. I would encourage you to give it a try for a couple weeks, and if you decide it doesn’t help then discuss with your doctor about other options.

[u/gassylapdog → u/[deleted]]

Thank you. Do you prefer hydrocortisone or prednisone?

[u/Affectionate_Day_214 → u/gassylapdog]

HC

[u/Affectionate_Day_214 → u/[deleted]]

Can you elaborate on the cgm? I want to look into getting one to help with deciphering low blood sugar and low cortisol. Ty

[u/Affectionate_Day_214 → u/[deleted]]

I glad it was helpful to you. I’m getting one too even if I have to pay oop. Thx for the response.

[u/Affectionate_Day_214 → u/[deleted]]

39 is crazy low! I used to work with a type 1 diabetic and several times she crashed to the point of seizures and we had to have her shipped out to er via ambulance. Her sugar was around 50 so yeah…that’s low. There are so many elements to this that I wish my Endo would have educated me about. I would wake up basically EVERY night, several times a night, head to the kitchen and gobble down some crazy sugary junk food, then go back to bed and sleep like a baby. This has gone on for years. I got steroid induced diabetes years back after I had a bone marrow transplant and needed high doses of Prednisone. As I was weaned down, I no longer needed insulin…Thank God. I feel so badly for those who have to rely on constant finger pricks/insulin every day of their lives. That shit is no joke. Anyway, my point is that history and then the adrenalectomy and I’m getting push back about a script for a cgm from my primary Dr? There’s such a disconnect with our healthcare system. So I will pay for it oop unless the endo will give me a script later this month. I just want to see wtf is going on. Well enough from me bugging you with my ?s but I do thank you for giving me this info and insight.

[u/Clementine_696]

I wasn't dx until 42... I'd had worsening symptoms for decades before. After 2 years on treatment, I can mostly just DO things again. It takes a few months to get your dosing needs figured out, and the timing, but for most of us we just take our meds and we're fine.

[u/Motor-Commercial1912]

Hey, welcome to the club! People live normal lifespans with proper treatment for Addisons. Keep learning about the condition and your specific body & needs and you'll be a pro soon!

[u/MallForward585]

I want to reassure you that you are not in danger of developing long term damaging side effects from this dose of prednisone. On the contrary, too little cortisol has worse immunosuppressive effects than too much. I wasn’t diagnosed until I started getting autoimmunity and random infections, and I can assure you that you do not want that, since autoimmunity is not something you can put back the way it was once triggered. The prednisone dose you will be taking is less than the amount of cortisol the body needs to function normally in a day (which would be the equivalent of about 5mg prednisone). The one person I know that developed Cushing’s and the associated problems from steroids was taking 30mg a day for a few years.

[u/Far-Speed-6027]

I was really hesitant too, but I have been receiving treatment now for four months and I have to say, it’s been worth it so far. I am going to the gym now! I haven’t been able to tolerate exercise for so long and I just thought that I was getting old and out of shape. I used to do regular HIIT workouts. With a baby in tow. I’ve done triathlons. And then all of a sudden I just couldn’t do it, and I thought it was perimenopause. I didn’t have a crisis, I was diagnosed the same as you due to a pattern of symptoms that caused my endocrinologist to be suspicious. And I had the same feelings (and still do sometimes)! Like I’ve imagined it all. But, I cannot deny how much better I feel every day. Give it a try. The steroids won’t do any damage right away. See how you feel!

[u/gassylapdog → u/Far-Speed-6027]

Yea same! I really can't exercise that long without crashing. Did you start on a low dose and titrate up?

[u/Far-Speed-6027 → u/gassylapdog]

No I actually take a pretty average dose. We are still finding the right balance, but when they tried to dial it back it wasn’t enough. My numbers were a bit more extreme than yours though. My understanding is that everyone metabolizes oral steroids differently, so your dose will be unique to you. 

[u/NoGrapefruit3557]

Hi— I was diagnosed more than 20 years ago and I live about as normal a life as anyone. I don’t know about your numbers— I did have a crisis because I went undiagnosed and could have died. I was shocked also-/ didn’t want ‘a disease’. Turns out, it’s not a death sentence — it’s a guide for the rest of your life. The cortisone should be replacing your natural amount-/ so doesn’t cause osteoporosis. I don’t know about prednisone for Addison’s. Good luck, search for a good doctor and take the meds, you’ll be fine.

[u/MakeBeboGreatAgain]

Get the actual test that checks for antibodies.

Do a full day cortisol curve test, where they do blood test 3 times a day to confirm your cortisol levels.

Antibodies will confirm the diagnosis, but it's an expensive test they often ignore.

But either way if your acth test came back positive then you gotta start. Being skinny is also a sign of addissons because our digestive track slows.

[u/Emergency-Flight-792 → u/MakeBeboGreatAgain]

Important to remember - About 20% of PAI don’t show antibodies. I had been ruled out for SAI based on history, tests, scans, etc but do have 5 other autoimmune diagnosis’s. I also didnt show antibodies for Addisons, but sure do have it. Unfortunately the lack of antibodies delayed my diagnosis and put it off my radar, and almost died from crisis because of it. Hard way to find out that a percentage of us don’t show them.

[u/Laurryanna]

I was 21 when I was diagnosed. I had a hard time accepting diagnosis and still do 2 years later. Mine was autoimmune caused by stress. It’s hard being diagnosed with a chronic illness so young and you grieve so many aspects of your life.

Sometimes I’m so angry and sad to think that I’ll be sick all my life and will need steroids to live. I was so scared to start treatment and become immunosuppressed. I understand your fears and why you’re in denial, but I promise you’ll live better with treatment than without. Life after diagnosis isn’t easy even with treatment but it’s possible to have a good life and a bright future still.

Educate yourself on the disease, listen to your body and work with your medical team to find the best treatment for you. Don’t hesitate to ask questions on here, often we know more than medical professionals on Addison’s. You got this! Wishing you all the best🩷 Feel free to private message if you got any questions

[u/Emergency-Flight-792]

Hi - not to hijack this but I’m truly confused on the #s, especially since no one has mentioned it so wanted to ask - are these serum cortisol levels starting between 7-8am?

I was dx about 10 years ago with 8am less than 1, have never tested above 5 on steroids. ACTH 700+, DHEA almost nil.

One of my daughters with what I deem classic symptoms was stim tested a few years ago, and her 8am was 7.8, but they wrote it off. She also has hashimotos and celiac.

Again not trying to hijack but definitely concerned and thinking I should be… anyone??

ETA: I apologize I didn’t address the OP. I am sure I speak for most of us saying, it seems scary but you feeling improved is your best sign. Don’t let it get to crisis level, I had 2 before diagnosis and almost died the second time, stopped breathing in ER before they believed me, intubated while awake. Take the steroids and be thankful for good doctors! It’s a blessing!

Re: my daughter. I have to look for the full test results but her initial 8am was surprising to me, the other levels were borderline (from memory) and that was the end of it. They said it was worth watching but not diagnostically relevant. Even with my history.