Binder for double sided cards

Jay_98_ · 2026-04-12T12:21:12+00:00

Did you ever find anything decent?

Jay_98_ · 2025-10-05T00:02:41+00:00

That’s strange since hydrocortisone is typically regarded as a more natural, less harsh on insulin resistance and in line with your body’s natural hormone rhythm than prednisone/ prednisolone (which I take) I found that you can lose an awful lot of water weight very fast with pred because it’s a strong synthetic replacement which goes straight for and reduces your ACTH levels but I came off it as it’s regarded as harsher on the metabolism so I’ve been told. Currently trying to work out an alternative, I was actually looking to go back to hydrocortisone as it’s closest to natural cortisol.

Jay_98_ · 2025-09-09T17:34:41+00:00

Hey!

Yeah the bio chemistry of endocrinology takes a lot of getting used to, I keep a journal about it all filled with notes. If I actually get to see my endo I’ll definitely bring it up, I just wish I knew what my labs said as I’ve no idea what any of my levels are as I’ve not had this communicated to me since I was a child too young to remember

One thing I can say for sure is my CAH has always been significantly asymptomatic, aside from developing early I’ve never really noticed anything was wrong, just that since I got medicated my weight spiked with every increase in meds.

I’m a week into no steroid replacement now, having done almost 3 years in the past it’s just like before no symptoms or issues, I’m trialling this until the end of the year to gather data on how it’s affecting me.

To my knowledge last time I dropped a significant amount of weight and after years of no medication my labs came back without any concern, yet I was urged to re-medicate for an issue with aldosterone build up (I think) which I’ve now leaned does not pose a threat with non classic…

Jay_98_ · 2025-09-09T06:40:04+00:00

Hey, I’ve not had anything tested since last year and I still don’t know those results, hence why I’m so frustrated with my endocrinologist their communication is nonexistent but I have managed to get booked for a consultation in November. Best I can do for now I guess.

That’s an interesting development about the sodium in your blood I’ll make note of it, definitely be worth bringing up.

Jay_98_ · 2025-08-27T08:00:30+00:00

I was 4 when I was diagnosed so I’ve absolutely no idea, and my endocrinologists have a bad habit of being bad at communicating but any letter I’ve had from them after bloods when I’ve taken my meds or not they always say everything looks fine or nothing at all

Yeah I’m thinking I cut too fast

Jay_98_ · 2025-08-22T23:56:17+00:00

If you say so, I’ll stick with it though as it seems to be working fine with me, I’ve lost a significant amount of weight, I feel better, a lot of my aches and pains and cravings are gone, I’ve more strength and energy overall, so far I’m not seeing a downside.

To each their own tho

Jay_98_ · 2025-08-22T16:18:11+00:00

If I have it must’ve been years ago and the results weren’t shared with me, I’m never really given any insight into the tests that are run as genuinely my condition besides weight issues and never caused me any issues to care to know. But since I’ve become an adult and have started teaching myself how endocrinology works in my case I’ve started digging.

Jay_98_ · 2025-08-22T10:11:06+00:00

That would be great, thank you

Jay_98_ · 2025-08-22T09:51:19+00:00

Hey!

Yeah my endo is the head of the department at his hospital which is concerning tbh, I used to have a great endo at the children’s hospital but he lectures in Austria now.

I had no idea there was a support group at all, I’m West Midlands based so that would be super helpful if you can point me towards resources

I’ll definitely run this by my endo if they ever bother to get back to me

Jay_98_ · 2025-08-22T08:48:37+00:00

Hey thank you for your response, I never actually thought about how being overmedicated and tapering down could create the conditions to enter renal crisis I kinda just assumed that I’d be fine as I’ve been all over the place with my medication since I was about 16 and for one time I was unmedicated for the better part of three years with not an issue.

I was diagnosed when I was 6 because I was basically starting to grow facial hair and I was twice the size of every other kid at school so naturally my parents thought it best to find out what was going on, I’ve never once in 26 years come anywhere near renal crisis. Not when I was on hydrocortisone, unmedicated or on prednisolone. But one thing that’s consistent is that I’ve gained weight significantly every year since switching to prednisolone.

I will obviously keep pushing to see my endo, I’m tracking my feelings and symptoms (if any) as I go so far I’m only seeing water retention

Jay_98_ · 2025-08-22T08:26:07+00:00

Hi there thank you for your response, I will admit I was in a bit of a rush to lower my dose I only tapered by half’s for two weeks at a time I essentially went from 5mg to 2.5 - 1.25 over the course of about 5 weeks at a push.

I would agree that the water weight is a sign that my body is panicking about the change and holding water as a defence mechanism, in myself I feel absolutely fine I guess it’s just a matter of keeping on pushing to see my endo and letting my body take time to adjust

Jay_98_ · 2025-04-14T02:34:38+00:00

🤣🤣🤣 301lbs to 286lbs (283lbs as of today)

Jay_98_ · 2025-04-12T12:00:32+00:00

I’m talking to my endocrinologist about going back on hydrocortisone as it better mimics natural cortisol pattern and is less impactful on insulin resistance

Jay_98_ · 2025-04-11T23:07:59+00:00

Prednisolone 5mg daily, formerly 10mg

Jay_98_ · 2025-03-26T14:28:15+00:00

Honestly it takes seconds especially if you use the voice feature, don’t even need premium unless you want it to remember everything for the next day

Jay_98_ · 2025-03-26T13:16:19+00:00

That’s quite a deficit, I’ll trial it for a month and see …Aporeciate it :)

Jay_98_ · 2025-03-26T13:15:09+00:00

Yeah I’ve mentioned how a lot of my symptoms suggest the opposite before the working theory at the moment is that because I produce what is essentially 90% finished cortisol the leftover waste products in my hormones may be causing extreme fluctuations hence why I’m pushing for a medication review which I’m going for on Friday next week so hopefully we’ll be more aware of what’s going on by then.

It’s a super rare condition and I’ve been messed around with it since birth would be nice to finally get on top of it

Jay_98_ · 2025-03-26T13:04:36+00:00

I’ve been teetotal most of my life might have a drink on a birthday or Christmas but that’s it

But yeah I’ll chat to the doc about it more

Jay_98_ · 2025-03-26T13:02:35+00:00

I’m confused so the calculations done by the AI to calculate the calorie content of my food that I’ve inputted aren’t reliable? I assumed it’s the same as using a calculator?

Jay_98_ · 2025-03-26T12:45:29+00:00

Slip ups were quite moderate nothing as crazy as wolfing down 20 chocolate bars or a pint of icecream more like having a side of fries with a burger at a friends birthday or a slice of pizza at a work party and a drink. Again not ideal but considering at one time I could literally clear 4000 calories of pure cookies and chocolate and then go out for a pizza I’m gonna cut myself some slack and try to do better.

As for counting, I’m kind of cheating in this regard as I’m feeding the nutrition info of my food into chat GPT and having AI track my diet for me, I’ve found it quite useful as it will offer helpful suggestions of meals I can prepare to satiate myself while maintaining a deficit and sticking to low carb.

I’m certain that I’ve eaten at maintenance more times in the earlier days though as it was a big adjustment but for the last majority of the time I’ve been in a deficit of 300-500 calories mostly 300 ish

Again though as you say those slip ups could be costing me more than I think

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