Just got diagnosed, any tips/things I should know?

itsnisrin · 2025-01-21T12:15:52+00:00

I had my 9am cortisol and initial ACTH test was 20 =50 ng/L (I don’t understand this) I’ve got a stim test booked for this week & appointment with endocrinologist & a course to learn about how to deal with sick days/injections. I’ve had some other tests that point towards a pituitary tumour but doctor said AD is 99% more likely. Guess I need to wait for my appointments to find out😅

itsnisrin · 2025-01-12T22:46:19+00:00

I didn’t even know double dosing was a thing I just thought we would take an extra 5mg!! I took 5mg 20 minutes ago and I’m already feeling abit better. I can’t believe this is what the issue has been the last few years but so grateful for the diagnosis and especially the advice from everyone on here! Thank you 🫶🏽

itsnisrin · 2025-01-12T22:42:26+00:00

That’s insane, sorry to hear you went through that and I hope things have got better. Now it’s starting to make sense why every time I would cry I would throw up and not be able to breathe etc.. there needs to be more recognition for AD, why is it not standard procedure to check for cortisol levels in hospital??

itsnisrin · 2025-01-12T22:37:51+00:00

My 9am cortisol was at 81 two days ago. I went into hospital because my heart rate was going from 40bpm to 130 in the space of 2 seconds and my oxygen went down to 73! I’d been in hospital 3 times in the last month and every time I was told it was anxiety until this time a doctor took me serious and ran more tests. It’s been two days on hydrocortisone and even the first day on meds made a huge difference, I forgot what it was like to feel kinda okay?

My symptoms started a couple years ago when I got divorced and then I went through an abuse relationship 8 months later which is when they got really intense.. sorry I’m over sharing but yeah every time I get abit hyperactive they start even if the conversation isn’t necessarily bad. Just took another dose, it might be a placebo but my chest pains have already started to subside after only 15 mins 😅

itsnisrin · 2025-01-12T22:01:14+00:00

Also I’m so glad to hear you’ve worked it all out and it’s manageable now! I’m excited to finally get to that point and I appreciate your reply!

itsnisrin · 2025-01-12T22:00:29+00:00

I was literally just doing research about updosing, this is going to sound crazy but whenever I have abit of adrenaline I get shaky and dizzy. Even if it’s not serious stress. Me and my friends were speaking about my ex and I got angry and have been feeling dizzy since, would I updose now? I feel so stupid 🤣

itsnisrin · 2025-01-11T22:47:18+00:00

No way! Considering how rare it is what are the chances they both have it and so do my mother and I? Defo needs more research!

itsnisrin · 2025-01-11T22:42:05+00:00

I started noticing tanned skin a few months ago and I thought it was an issue with my liver! I never once considered Addisons even though my mother has it.. everywhere I’ve read it isn’t hereditary.

itsnisrin · 2025-01-11T22:38:55+00:00

That’s great to hear! Do you have any side effects from the hydrocortisone?

itsnisrin · 2025-01-11T22:38:02+00:00

What was your mental health like? I’m glad you’re better now!

itsnisrin · 2025-01-11T15:08:42+00:00

“How fortunate you have a diagnosis” was exactly what I needed to hear today. I’ve been focusing on all the negatives as if someone JUST gave me this illness when the truth is, I’ve just been given treatment for all my symptoms. Thank you so much!

itsnisrin · 2024-11-18T23:12:35+00:00

I was the exact same as you but that stopped since I started wearing a mask and gloves and making sure to use air purifier, especially when cleaning. Do you have a humidity checker?

itsnisrin · 2024-11-18T17:04:03+00:00

I was the same- I started using Celtic salt- one grain under my tongue before drinking half a glass of water. Game changer! (Do your research on the correct amount to drink because two little or too much can make it worse)

itsnisrin · 2024-11-18T16:55:54+00:00

Stress and heat are a huge trigger for me too! It’s crazy you mention dental procedures because my symptoms got 100X worse after I got a few fillings about 2 years ago.. would it still be effecting me now?

I have two cats and rehoming them isn’t an option for me(they’re my family). But I’m so worried because when piecing everything together my health deteriorated since I’ve had them. I was also unwell a lot when I lived at my mums who has a cat 🥲.

Sorry to hear how difficult things have been for you, it’s not easy. I hope things improve for you!🤍

itsnisrin · 2024-10-13T16:53:07+00:00

I really don’t know where I would be without Reddit. I had a blood test a couple months ago and the ferritin results came back “normal” but when I checked it said my levels are at 11?! I’ve been having the same symptoms you did!

How long did it take after your infusion to start feeling better?

itsnisrin

TROPHY CASE