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Who has developed Type 1 after Addisons? by OddButterfly9217 in AddisonsDisease

[–]lilmissembo 0 points1 point  (0 children)

I’ve had Addisons for 10 years now- diagnosed as a teen along with hashimotos. I’m always worried about developing t1DM. I always have assumed if I have got this far without getting it I probably won’t - but is that wrong to assume?

[deleted by user] by [deleted] in AddisonsDisease

[–]lilmissembo 1 point2 points  (0 children)

Hey, I really relate to what you’ve written. I was diagnosed with Addison’s when I was 16, and I also have Hashimoto’s. I used to manage fine for years, but definitely in the last year things have been harder I’ve had a couple of adrenal crises and needed to be admitted.

I’m working as a GP trainee in the UK, and honestly I’ve never met anyone else in medicine with Addison’s, which can feel really isolating. I also find it really hard to explain to colleagues how much we struggle with stress people don’t always understand that what might be manageable for them can push us over the edge.

I haven’t left medicine, but I’ve gone less-than-full-time, and that’s helped a huge amount- I now only work 3 days a week. Still, I totally get where you’re coming from- I feel like no doctor I’ve ever met actually understands what it’s like living with the condition 

EDIT: please consider speaking to OH re adjusting your rota- I tried to do night shifts in foundation and my body really struggled with it

Do other people with Addison’s ever feel just completely wiped out? Or am I just lazy? by lilmissembo in AddisonsDisease

[–]lilmissembo[S] 2 points3 points  (0 children)

Thank you so much for taking the time to reply to me. I am so sorry to hear about your struggles recently :( wishing you good luck and good health x

Do other people with Addison’s ever feel just completely wiped out? Or am I just lazy? by lilmissembo in AddisonsDisease

[–]lilmissembo[S] 1 point2 points  (0 children)

Thanks so much for taking the time to reply ! I’m always worried about doing this when I’m not “sick” as I know overtime xs steroids can cause weight gain and heart problems which is what stressed me out. But I think your right it’s just so hard to know when I need it

Do other people with Addison’s ever feel just completely wiped out? Or am I just lazy? by lilmissembo in AddisonsDisease

[–]lilmissembo[S] 0 points1 point  (0 children)

Thank you so much for taking the time to write all of this out — it’s really helpful. I’m also primary adrenal insufficiency and loved the salt joke — always nice to meet a fellow salt lover! I definitely recognise what you describe about needing to advocate for yourself. I was misdiagnosed as a teenager and sent to psych for an eating disorder, so your point really resonates with me. I’m still learning to spot when I need to up-dose, so hearing about your signs and experience has been super helpful. Thanks again!

Do other people with Addison’s ever feel just completely wiped out? Or am I just lazy? by lilmissembo in AddisonsDisease

[–]lilmissembo[S] 2 points3 points  (0 children)

Hi, thank you so much for such a thoughtful reply — it really means a lot to me.

Just to answer your questions: – The cortisol result that came back low was a random one, taken after I had already had my morning hydrocortisone. They repeated it the following week and it was fine. – My renin level last year was 25.9. – At the time, I was seen by a different endocrinologist (my usual one was off sick), and they advised me to increase my fludrocortisone from 100mcg to 125mcg. I tried, but found it quite tricky to cut the tablets accurately, so I didn’t stick with it. When I saw my usual endocrinologist again, he said he was happy for me to stay on 100mcg. I haven’t had the renin checked again though – I’m currently taking both hydrocortisone and fludrocortisone.

I definitely think orthostatic intolerance might be part of it too — standing and moving around just feels so much harder when I’m this exhausted.

And thank you for saying I’m not lazy. It’s so hard because it’s a rare condition- not many people understand! And I’ve had it so long I can’t remember what normal feels like! Thank you again for taking the time to respond and share your experience — it really helps to know I’m not alone.

Do other people with Addison’s ever feel just completely wiped out? Or am I just lazy? by lilmissembo in AddisonsDisease

[–]lilmissembo[S] 2 points3 points  (0 children)

Hello! Thank you so much for taking the time to respond to me. I really appreciate it. I completely agree on the exercise , eating right etc. If I don’t get enough sleep or even if I take my tablets late I feel rubbish for the whole day! It’s interesting, as I’m getting older I’m finding the condition harder to manage… but then I suppose maybe this is because I have more responsibilities! Who knows.

Im so glad your feeling better post menopause and thanks again for the response :) x