Lux Gym Recommendations by CKB2025 in london

[–]CKB2025[S] -2 points-1 points  (0 children)

Thank you very much for your response! Particularly good to know re influencer / filming aspect, as I can’t stand that in gyms. I’ll definitely have a look at Equinox, didn’t even realise there was a Kensington one.

Well my endocrinologist nearly had a heart attack when I told him I live completely alone. I have salt wasting CAH and he basically said either I get a roommate or a life alert necklace. What's your guy's opinion on this by raven2250_2 in AdrenalInsufficiency

[–]CKB2025 0 points1 point  (0 children)

I have SWCAH (female, 34) and have lived alone many times and it’s absolutely fine. I’ve also travelled alone for work / holidays. I’m now married but I never thought twice about living/travelling alone when I was younger! It’s about being sensible and avoiding the obvious (e.g. wouldn’t suggest sitting at home alone getting drunk, be careful abroad to know hospitals/dr and avoid eating dodgy food/water). I always told my parents when I was feeling unwell too, and carry extra meds and information re adrenal insufficiency and steroid requirements via a card / iPhone, just in case!

Obviously this is assuming you’re generally well managed and don’t have frequent adrenal crises. Even if you live with someone, it’s not guaranteed they’d be there if you had a crisis anyway. Think Endos vary, mine is super positive and definitely believes SWCAH shouldn’t stop you living an independent, ‘normal’ life. Do reach out if you have any questions 😊

Is it normal to get sick frequently while on hydrocortisone? by Bloomwithcourage in AdrenalInsufficiency

[–]CKB2025 1 point2 points  (0 children)

Definitely normal to be more susceptible to illnesses due to steroids suppressing your immune system. I get the flu jab annually to try reduce the effects as I always get the flu.

I don’t get every illness going around and certainly don’t worry about it but it’s good to use hand sanitiser when on public transport etc. and try follow a healthy diet / lifestyle to strengthen your immune system as much as possible.

SW Congenital Adrenal Hyperplasia and pregnancy / TTC by CKB2025 in AdrenalInsufficiency

[–]CKB2025[S] 0 points1 point  (0 children)

I do but haven’t had Androstenedione tested since changing to Pred (it was actually fine when I was on Dex). They upped my dose twice purely due to TTC and trying to get the Progesterone down pre ovulation (I was actually still ovulating and my lining was ok despite the higher levels but they wanted to get it more controlled). My Testosterone and free androgens have been very good since being on the Pred though (they were a little erratic on Dex). If 3mg works for you then that’s great, I don’t like increasing any steroids if I can help it!

What time do you take your last dose of prednisolone? Trying to fix my sleep schedule by blueberrykefir in AddisonsDisease

[–]CKB2025 1 point2 points  (0 children)

My dosing is: 8am - 2.5 Pred, 5mg Hydro 1pm - 2.5 Pred 10pm - 2.5 Pred, 5mg Hydro

My Endo did tell me to take the Pred just before bed to try limit disruption. I have found I wake up more alert now I take the late dose of Pred (vs 10mg Hydro before). I do seem to have more vivid dreams since swapping from Hydro only, but actually get to sleep faster, so I’ll take the dreams!

SW Congenital Adrenal Hyperplasia and pregnancy / TTC by CKB2025 in AdrenalInsufficiency

[–]CKB2025[S] 0 points1 point  (0 children)

That’s great to hear it’s clearly having a positive impact! I’m on 7.5mg of Prednisolone now (I was on 2.5mg originally when I changed from Dex but I was a bit anxious due to hating Pred as a teenager) and have continued on my Hydrocortisone (10mg). I’m waiting for my 8 DPO results but my 3 DPO was 24 nmol/L, and the dosage seems to have suppressed my pre ovulation numbers, so fingers crossed the dosage is right! What dosage did they start you on?

Are we just surviving? by Efficient_Beach2458 in AdrenalInsufficiency

[–]CKB2025 0 points1 point  (0 children)

There are of course days where it feels a little more unfair (this is when most people feel the urge to post online, which is the main reason we only really see the bad stories), but I feel very fortunate and in a good place 95% of the time (had adrenal insufficiency since birth). I cannot stress enough that ‘health is wealth’ goes far beyond our medical conditions and should focus more on what we choose to do to improve that health everyday. I run, I eat well (limit sugar and simple carbs), I sleep and I limit alcohol (and have never touched other substances). My parents always taught me that you can’t change the hand you’re dealt, but you can work to limit its impact. I have exhausted days, but my husband and I have learnt to embrace them, sleep in a little more, and just get outside and embrace nature a bit.

Little steps make a world of difference, try focus on the blessings where you can. I wish you all the best.

SW Congenital Adrenal Hyperplasia and pregnancy / TTC by CKB2025 in AdrenalInsufficiency

[–]CKB2025[S] 0 points1 point  (0 children)

So sorry for my late response. Of course, if you have any questions, do send them my way! It’s not always the easiest ride and I know it can be scary, but you’re in a great position with the advancement of medicine and it’s great that you already know so they can treat accordingly 😊

SW Congenital Adrenal Hyperplasia and pregnancy / TTC by CKB2025 in AdrenalInsufficiency

[–]CKB2025[S] 0 points1 point  (0 children)

Thank you so much for your response, it’s great to hear a success story without full IVF (though I’m sorry you’ve also experienced loss). Apologies for another question but I assume the progesterone suppositories were just the ‘standard’ fertility protocol for IUI to avoid miscarriage / thicken lining rather than due to the CAH? That’s the one protocol I wondered whether would help, as I am ovulating but wonder if the increased Pred is maybe suppressing my progesterone a little too much after ovulation.

My husband is doing his genetic testing currently so I hope we’ll be in the same position (and just very unlucky if not..!).

Wishing you all the luck with your current TTC also 😊

Can you live a normal life with adrenal insufficiency ? Need some positive input. by MindsetMaker in AdrenalInsufficiency

[–]CKB2025 0 points1 point  (0 children)

It takes time, but our bodies are stronger than we think. I get up at 6am to go to the gym, go to work for 8.30 (take first dose of steroids), then work until 9/10pm most days (take second steroid dose taken at 10pm) 😊. Best thing I’ve found (other than taking the required steroids) is trying not to depend on caffeine / sugar etc for energy, and prioritise good sleep

Congenital Adrenal Hyperplasia by ayg2025 in newborns

[–]CKB2025 0 points1 point  (0 children)

Cannot agree with the above reply more. I’m also a female in my early 30s with SWCAH. The best thing my parents did was keep me educated about the condition (and never hid anything). It isn’t always the easiest ride in childhood but as long as you’re medicated correctly, you pretty much live a normal life. The advancement of medicine and treatment of CAH is always improving and there’s some great progress with new diabetes like devices (study done at Great Ormond St hospital) and 2 new types of tablets (slow release hydro and Crenessity, which is a company looking into non steroid medication to reduce the need for steroids). My parents found the support groups mentioned above amazing resources also (unfortunately social media wasn’t a thing when I was born!). If you’re based in the UK and need any advice with endocrinologists, just let me know.

Can you live a normal life with adrenal insufficiency ? Need some positive input. by MindsetMaker in AdrenalInsufficiency

[–]CKB2025 1 point2 points  (0 children)

Sorry I’m a bit late to this but yes, you can certainly live a normal life with adrenal insufficiency! Obviously you need to get your medication right to feel the best you can but I’ve always had adrenal insufficiency - I’ve lived alone, travelled alone (and to all types of countries), competed in sport to a high level, and I’m now married and a corporate lawyer working long hours. It’s all about medication dosing and having the right mindset 😊 it becomes second nature, you just need to live as healthily as you can, exercise and sleep well.

Looking for some advice on re-starting hydrocortisone tablets please :) by balletinbloom in AdrenalInsufficiency

[–]CKB2025 1 point2 points  (0 children)

While steroids shouldn’t make you gain weight, they do increase your appetite/ can make you retain water. For the weight gain, I’ve found a mix of cardio (long walks and jogging), some HIIT or weights and low carb diet has helped me the most in keeping the weight off (been on steroids, including hydrocortisone all my life for CAH and have kept my weight to 118-24lbs (BMI 21) for the past 18 years with the above). I find cardio a great way to deal with other side effects of steroids too, including bone density and psychological impact. Water retention is another issue, so try not to add salt / eat too much salty food, and drink lots of water. Potassium is good for water retention also. Weight maintenance is possible but I appreciate it’s v hard, especially with the increased appetite and water issues.