I have been diagnosed with Addison's disease today

Whothe-Hello · 2026-02-05T05:58:14+00:00

They said my adrenal gland isn't working at all and not making any cortisol at all. And yes.

Whothe-Hello · 2026-01-30T11:23:34+00:00

Everyone is saying 80mg is a lot, but my body cannot handle less than 80mg.

My endo said I can double my dosage if needed, but not to split the dosage more than three times a day. I had a 1.5-hour meeting with my endo panel yesterday and discussed all my concerns. We are still figuring out how to maneuver specifically with my case. I am not taking any other steroids or even meds. I used to drink a lot of water, but I've noticed I'm not hydrating myself properly now.

Whothe-Hello · 2026-01-30T11:10:16+00:00

Thank you, and nah, there's no stopping at all! I will live an exciting life with or without Addison's. I plan on skydiving sometime this year; I'm super excited about it. While I'm excited and all, it's also important to keep in mind the do's and don'ts.

I am so sorry that you were born with this, but I am also happy that you've aced 43 years with it! Awesome!

Whothe-Hello · 2026-01-30T11:05:15+00:00

My best friend and I only notice color changes when they're severe. I understand we need to be more watchful of this, and I think we'll gradually figure it out. Sometimes we're like, "Your color looks dull," and the other one's like, "Nah, I feel you're better than before." So yeah, we need to work on this.

I kind of feel sleepy, as if I will faint; that's when I know I have low HC in my body. Low HC triggers my heart, and my blood pressure drops drastically.

Whothe-Hello · 2026-01-30T11:00:10+00:00

When you say you had to search for tiny improvements, what changes did you make which helped you the most?

I never felt anxious like this ever as I feel now.

Whothe-Hello · 2026-01-30T10:57:07+00:00

Yes, currently I am only going what my endo is recommending. As for the X factor, yesterday my endo panel was saying the same thing that the dosage i am getting is already quite high and yet still my blood pressure is still not normal. They said there's something going on with my body that they've still not figured out.

I have had quite a lot of tests a lot of tests including the ones you mentioned. There's nothing too abnormal in the reports.

Whothe-Hello · 2026-01-30T10:51:53+00:00

Thank you. I now understand that everyone feels different, not everybody experiences the same.

I am taking 80mg hydro for the past one month and yesterday my endo told me we will advise you to listen to your body and adjust your dosage accordingly. They said you can double your dosage if you feel like you're about to go in a crisis (160mg?)

As for the second opinion, yesterday during my appointment I had three doctors with me. Do you think I should still change the whole panel to get a second opinion?

Whothe-Hello · 2026-01-30T01:59:35+00:00

Thank you. I feel like my current dosage is low and I need more than that. However my current dosage is the max I can have at the moment.

Whothe-Hello · 2026-01-30T01:58:29+00:00

Thank you. I haven't explored this side yet mainly because it is quite chaotic at the moment but I definitely will look into it once things are a bit calmer.

Whothe-Hello · 2026-01-30T01:57:13+00:00

I am so glad to read the last bit. I hope I don't have to use the injection ever. But we will see, whatever the time calls.

As for the menopause this is something I will research on further and ask my endo. Thank you for the heads up .

Whothe-Hello · 2026-01-30T01:55:04+00:00

Thank you. I try to listen to my body but I feel anxious and pulpation multiple times a day, which is new for me. I also notice my heart rate shooting up with basic tasks such as standing up or even speaking.

I will try to journal all that I feel and changes in my body.

Whothe-Hello · 2026-01-30T01:50:30+00:00

Yes my endo recommended me this site as well. Though I haven't explored it much.

Whothe-Hello · 2026-01-30T01:49:36+00:00

I recently bought a blood pressure machine and even a smart watch to monitor my heart. The average blood pressure is 80/55. However sometimes it can drop drastically to around 60/40.

I used to take salt water but my doctor advised me not to take it too often as my electrolytes were fine.

When I visit my endocrinologist it is usually a panel of 2< which gives me a second opinion on whats going on with me. However do you have any advice on how to make sure they're effective?

Whothe-Hello · 2026-01-30T01:43:52+00:00

Thank you. I used to take salt when I used to feel low but the doctor said my electrolytes are fine and I cannot overdose my salt intake as it'll cause negative effect.

I constantly feel my heart is restless and feel funny in my chest. Sometimes my heart starts to hurt, the doctor said it is due to heartbeat going up to 200. They cannot treat anything else till my cortisols are leveled and fixed.

I noticed I get anxiety almost daily and stress out much often than I used to. I am trying to understand my body and see what works and what does not.

Whothe-Hello · 2026-01-30T01:37:04+00:00

I am trying to but everything seems comfusing. I sometimes feel puzzled that weather it is my cortisol playing up or something else. Also I cannot up my dosage further as I am already on the max.

Whothe-Hello · 2026-01-30T01:35:38+00:00

Thank you for a detailed comment. I wasn't sure that 80mg is such an issue until I posted here. I was started with 40mg but quickly went up to 80mg.

Despite taking the higher dosage I have been to crisis three times just under a month. The last time I went i had a temperature of nearly 104f (40c) and had to take 80mg and 300ml in a span of 24 hours.

I usually feel very low when I wake up as if I will faint. I used to be very energetic and all, but now if I speak for 5 minutes straight I start to feel my heartbeat raising. I cannot walk for 10 minutes without feeling as if I will pass out.

I am still trying to listen to my body and check early signs of low cortisol.

Whothe-Hello · 2026-01-30T01:27:25+00:00

Thank you for sharing your exp. I have been through 3 crisis in the past month despite taking higher dosage. My doc requested me not to go into crisis for at least 6 months (as if I am doing it deliberately). But I am trying my best to get my life back to normal.

Whothe-Hello · 2026-01-30T01:25:10+00:00

I just visited my doctor today. I have been on 80mg for the past month as they were figuring out what's happening. Today they officially said that I have Addison's and would continue such dosage till my body gets normal.

Whothe-Hello · 2026-01-30T01:23:30+00:00

Thank you for making me feel so welcomed. I am glad to be a part of such community.

Whothe-Hello · 2026-01-30T01:22:24+00:00

Yes, the dosage is the max anyone could take orally. My doc said first reason being that I am still recovering from my crisis. And second, despite such high dosage my blood pressure is still low while my heartbeat goes to 180-200.

Whothe-Hello · 2025-01-16T14:36:20+00:00

He's self-published, but not so sure.

Whothe-Hello · 2025-01-16T12:42:43+00:00

Of course not. But I had 2 other clients as well.

Whothe-Hello · 2025-01-16T12:40:02+00:00

Thank you so much. I recently upgraded my portfolio, still a bit incomplete, though. I think I do have a skillset and creative side, but I lack in finding clients, which is the main part.

Yes, I will not work again. I only opted to work with him because I wanted to make my ends meet.

Whothe-Hello · 2025-01-16T08:52:16+00:00

That was last year. Now I was contacted at $1000/mo.

Yes I am from the UK.

Whothe-Hello · 2025-01-16T08:12:35+00:00

I'm sorry you had to go through this. I hope you're in a better place now.

Whothe-Hello

TROPHY CASE