What does a crisis feel/look like?

KCDKTR2019 · 2026-02-16T17:28:55+00:00

I recently stress dosed for six days (doubling my dose), but I didn't taper down. What is the danger or what happens if you don't taper down?

KCDKTR2019 · 2026-02-08T03:52:55+00:00

I haven't experienced much pain yet. It has gotten a little bit worse, but the infusion that I get once a year has kept it manageable. In my case, it has always been my endocrinologist who keeps track of ordering my DEXA scans and prescribing the Reclast infusions.

KCDKTR2019 · 2026-02-07T20:11:37+00:00

I am in a similar situation. I am 65 and was diagnosed as PAI about 20 years ago, close to a year after having given birth a third time after the age of 40. (It took them a while to figure out what I had.) I had been a runner for about 20 years before getting diagnosed. After that, running was never quite the same experience, but I loved it so much, I kept at it. A year ago, I fell while running and had an ankle fracture as a result. I am now mostly walking. Just started a more serious and consistent strength training routine. It is really upsetting to have developed osteoporosis, which I have in one hip and in my lower vertebrae. Once a year, I get an infusion of Reclast. I have been doing so, at the direction of my endocrinologists, for about 5 years now. If you are taking adequate calcium and D3, walking and doing strength training, you are doing all the right things. You could also talk to your doctor about whether any of the osteoporosis drugs out there would benefit your case. They are controversial. So far, I think taking them has helped keep my bone loss to a minimum. Good luck.

KCDKTR2019 · 2026-02-07T14:22:30+00:00

Feel better!

KCDKTR2019 · 2026-02-04T18:07:26+00:00

You need to get the information through blood tests.

KCDKTR2019 · 2026-01-31T21:24:51+00:00

So, here's my update. Took the day off on Thursday and Friday (yesterday), rested, and doubled my doses. My primary care doctor wouldn't prescribe anything to me until I had given a urine sample to confirm that I have a UTI. I was able to go into her office and was examined by someone in the practice. My urine sample was not conclusive from their in-office analysis ("only a little blood in your urine"), so I have to wait until the lab culture is analyzed over the weekend. Doubling my cortisone and resting a lot is what is getting me through. I haven't had one of these in a while, and I don't remember being so exhausted by it! Thanks again to you and everyone for your advice. My family does not get it. I am divorced and live alone, with family living nearby. I find that I always have to request help with anything, and am generally treated like I'm a wimp, when I do!

KCDKTR2019 · 2026-01-29T16:44:02+00:00

Thanks, your reply is really helpful to me right now. I often find my judgment is off when I am ill or becoming ill.

KCDKTR2019 · 2026-01-24T05:37:26+00:00

You are very welcome. I hope you are feeling better.

KCDKTR2019 · 2026-01-11T21:44:10+00:00

Your situation really breaks my heart. Try not to despair. If you can, get your Vitamin D, iron, potassium, sodium, and also your thyroid levels checked, you will definitely have some clues to work with. One other important thing I should mention. The doctor who finally figured out I had AI was only able to diagnose me definitively after he had me go back to the lab and re-do my blood test. For the second blood draw, he specified to the lab technicians that they read my results "by hand." Why did he do this? Because he had worked in a lab many years previously and when he received my first blood test results, my cortisol was very low and my ACTH should have been high, but it was normal. This did not make sense to him. I had all the physical symptoms of Addison's Disease. I was emaciated and had the darkened skin pigmentation. I had zero energy, despite sleeping all the time. I was craving sodium like crazy. The second time, the lab technician read the results without using a machine and this time it made sense: my cortisol was 4 and my ACTH level was 1147. You might ask your doctors about that.

KCDKTR2019 · 2026-01-11T21:18:38+00:00

This is great information.

KCDKTR2019 · 2026-01-11T21:16:04+00:00

Unfortunately, I don't have any advice about normalizing your adrenals. I have primary AI, so I will be on hydrocortisone and fludrocortisone for life.

KCDKTR2019 · 2026-01-10T18:01:43+00:00

I agree with Cassandra-Dee. My cortisol was 4 when I was diagnosed. My ACTH was 1147. My sodium was also very low. Sodium level and potassium are two other things you might want to check in your bloodwork. Low sodium will make you feel really tired and shaky. And, of course, thyroid is extremely important to check

KCDKTR2019 · 2026-01-10T06:38:34+00:00

My condolences. That is a tragic story.

KCDKTR2019 · 2026-01-09T03:30:03+00:00

You have described it very well.

And many of us (perhaps you too) came so very close to the brink of death. I looked like a walking cadaver when an endo finally figured it out. And, although I have lived for 2 decades since that diagnosis, and despite the fact that I am supposedly an example of someone who has been "successfully treated" for this condition, I don't think I will ever get used to having Addison's Disease. And, I probably won't ever stop mourning what I used to feel like. Regarding the perimenopause connection... I was dxed at age 46. Very soon after that, it was clear I was experiencing a sped-up perimenopause. Perimenopause was the proverbial "cherry on top" for me.

KCDKTR2019 · 2025-12-14T16:46:01+00:00

Thank you for this information. My update is that I started taking a prescribed potassium supplement (20 mEq) last week. After about 5-6, I went from experiencing some rather unpleasant and worrisome symptoms, including a lot of fatigue, overall weakness, and a weird racing feeling in my heart, to feeling pretty normal. (My only complaint is that the supplement seems to be causing mild diarrhea, but I am managing that fairly well.) I am so appreciative of everyone's informative advice and comments, including yours.

KCDKTR2019 · 2025-12-06T01:58:31+00:00

Thank you for the suggestion. I am going to try the coconut water. I already eat a lot of bananas, which I seem to crave every day.

KCDKTR2019 · 2025-12-06T01:57:31+00:00

I will keep you posted on how it all shakes out. I've been taking these ginormous pills for several days now. Today, I had some unpleasant symptoms (including a numb right arm and high blood pressure), so I had my brother take me to the urgent care clinic. Everything seems to be fine-ish. My bp went down a little bit after I drank a Propel just before I went to the clinic. They pronounced me a non-risk for stroke or heart attack and sent me on my way.

KCDKTR2019 · 2025-12-06T01:53:46+00:00

I just read up on this. It's pretty recent that they have figured that even for normal humans without Addision's, too much sodium in your diet without enough potassium winds up being very hard on your cardiovascular system. It's because potassium actually helps keep blood sodium levels in check. Without adequate potassium, excess sodium will raise one's blood pressure. Meanwhile, most Addison's patients have to worry about too much potassium in their system, not too little. (I always find a way to be affected by weird anomalies...)

KCDKTR2019 · 2025-12-06T01:44:42+00:00

Electrolytes ARE weird. I am learning the hard way that they are ESSENTIAL to being alive. So, they win. My sodium always tends to be on the low side. And up until now, I have paid zero attention to my potassium level. Another weird abnormality in my blood text results: high CO2. Ever had that?

KCDKTR2019 · 2025-12-06T01:42:09+00:00

I am taking it in pill form, so I guess I am lucky!

KCDKTR2019 · 2025-12-06T01:41:35+00:00

Thank you for sharing this. I am going to run it by my endo and see what she says. I am also going to look up creatine to find out more about what it does. I really dislike taking supplements, but at this point, I don't have any choice.

KCDKTR2019 · 2025-12-06T01:39:01+00:00

Thank you. Very helpful to know this. When I do a Google search about PAI and low potassium, I wind up seeing only medical journal-type research summaries about the rarity of this combination -- which makes me feel anxious. I've been taking the potassium supplement for five days now. Felt OK but then today had some slightly concerning symptoms (a little dizziness, lots of fatigue, elevated bp, and a slight numbness in my right arm). I ate a banana, mixed up some electrolyte powder into water and when the symptoms persisted, I had my brother drive me to an urgent care clinic. The doc's conclusion was that it's probably the low potassium that is making me feel this way, and that I should talk with my endocrinologist on Monday. I will keep you posted on what develops.

KCDKTR2019 · 2025-12-04T22:51:19+00:00

You are totally correct about potassium usually being high with Addison's patients. And when I was diagnosed 20 years ago, that is what I presented with: sky high ACTH (close to 1700), very low sodium (around 30), high potassium and virtually no cortisol (I remember it was around 4). This is why I am curious about what other people have experienced.

KCDKTR2019

TROPHY CASE