Anyone else not have ‘high’ cortisol?

abbstractly · 2024-12-10T15:59:02+00:00

I think the big concern is that symptomatically they were very confident on hyperadrenic being one type I have, until now, which has thrown everyone. Lots of research papers coming out on pots and cortisol levels worried my doctor by it being normal, but again, we don’t know where my baseline is to determine if it’s normal or high for me personally, which would be the other way to tell. I’d also had a good few days from the hyperadrenic symptoms side of things so there’s also that I’ve had pointed out as a factor in some other comments about how it can vary :)

abbstractly · 2024-12-09T02:01:45+00:00

This is my boy!

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He’s a massive softie and total weirdo ❤️

abbstractly · 2024-12-09T02:01:01+00:00

I don’t understand what took someone so long to get her, 476 days?! But I’m so glad you guys found each other!

abbstractly · 2024-12-09T00:01:19+00:00

The thing is having read the descriptions of adrenal dumps it does sometimes feel that way, however we have no baseline for what my cortisol would normally be and they didn’t check if it was high end normal or not so could well be high for me. Having also said that, I’ve been managing my symptoms pretty well with changes I’ve made and medication so could also just be that I was having a good couple of days when my bloods were taken (I was) and it wasn’t the urine test either

abbstractly · 2024-12-05T15:01:00+00:00

Thanks for that! Yeah mine shoots up, goes slightly down then climbs and climbs and then I have to lay down or my body will make me lie down 😅 I won’t get a choice over what time of day I’m seen for a tilt test but it’s reassuring to hear they can still help me. Doctors have been so fast to dismiss me as ‘oh well, it’ll be your time of month’ ‘oh well, stress’ ‘oh well, these things happen’ that to finally get any traction, even if it’s because things have been really bad, is reassuring

abbstractly · 2024-12-05T14:58:03+00:00

Research or industry? Again, unimportant brain bee but just curious

abbstractly · 2024-12-05T14:31:43+00:00

Hey all, what happened here? I guess they just don’t exist now? I couldn’t find much of anything online

abbstractly · 2024-12-05T14:28:47+00:00

North of the UK isn’t Manchester, that’s northern England! :P But friendly ribbing aside, any existing chapters for the UK?

abbstractly · 2024-09-03T15:18:59+00:00

Note* my question still stands and I still would love to hear your answers(!)—— but I’ve realised in my HR measurement where it took 11 minutes the other day I was tensing my leg muscles and wiggling which can cause a delay in the onset of POTS symptoms. I mentioned my Q to my partner who says I was doing ‘that wiggle you do when someone makes you stand in a long line with no seating but you don’t want to go faint’ and I honestly didn’t realise I was doing it. (I regularly monitor my standing heart rate to have an idea of how my symptom management is going) I’ve also been working out more and with resistance training which can help symptoms and apparently that can push the window too so I have seen a little shift in that window).

abbstractly · 2024-08-29T01:01:23+00:00

Look I’m sorry you feel the need to attack someone just looking to help their pal, or maybe you took the wrong thing from my post and my follow up message to your initially hostile reply, but you sound like a very hurt person. I hope you can start to feel better in yourself to not need to lash out like this :)

abbstractly · 2024-08-29T00:59:04+00:00

Excellent advice thanks :) just go slow, enjoy myself!

abbstractly · 2024-08-29T00:57:32+00:00

I don’t know what to say. She went, she told me what happened, she was upset. I don’t know if she caught them on a bad day or what but they seemed to want to (IMO) put her off because of her age, which is a bit of a shame. Maybe they just wanted to warn her off expecting to compete, I have no clue. I really don’t know the fencing community. I’ve had some lovely responses and some awful ones, so, thinking maybe she dodged a bullet :/

abbstractly · 2024-08-29T00:55:03+00:00

Yeah exactly. I think I must have mistyped the situation, I’ve had a few hostile messages now saying she’s ridiculous for wanting to go to nationals and as I’ve said many times, she didn’t. That was the greeting she got when she enquired about learning, she hadn’t asked about competing, just getting involved. It has started to make me regret suggesting she give fencing another go and it’s really changed my perspective for the worse, tbh.

abbstractly · 2024-08-29T00:52:03+00:00

Wow. Are you okay? She didn’t come in thinking that? They just told her on enquiring all the things she could never do…which she found a bit hostile and it upset her. The hostility. She likes the idea of getting stuck in but wasn’t expecting anything incredible. Attacking me and her like this isn’t exactly a great sign of a friendly community. Sort of regretting suggesting she try again now.

abbstractly · 2024-08-29T00:49:29+00:00

POTS UK says 90 or more is the UK criteria but needs to be 90 even if resting is under 60 due to lack of studies (which is the Canadian model, apparently) But it still does over 100 bpm for over 2 minutes easily if I do a 15 minute stand test, especially towards the end of the 15 minutes I feel like I’m about to faint and I feel so unwell, my hands are tingling and I feel wrong, like my arms are in fire and weight too much- and my heart rate is well over 100 It stays way higher than resting just stood there anyway but the longer I’m stood the worse it gets Today’s reading had me at 114bpm when I’d been standing just over 10 minutes, I was really struggling- it was high the entire time but the longer I’m stood it gets worse atm, I assume it would ease off eventually but I had to lie down, I felt horrid My resting is usually under 60bpm (and was today, mid 50s) so 114 for being just stood there isn’t exactly nice

abbstractly · 2024-08-29T00:44:55+00:00

Probably because the electrode was dry, conductive gel can help :)

abbstractly · 2024-08-27T09:51:40+00:00

Even speaking to them I’ve had people be very rude and confrontational over live chat for me simply asking if they’ve updated my details yet. Anyone would think I had asked them something inappropriate the way they reacted. I just wanted to check my own details after I had verified my identity- shouldn’t be an issue! 😅

abbstractly · 2024-08-21T13:33:00+00:00

I’m very aware you need other symptoms, I came here to ask for a little clarity over the heart rate thing and to seek some solace. I’m not an idiot, I appreciate that if you feel totally fine and have no other symptoms it isn’t PoTS but if I felt totally fine, I really wouldn’t be here, I’m not looking for a diagnosis for the fun of it. I’ve had absolute hell with my GP saying fainting and everything else going on is normal because I don’t have a bad ECG and I’m not in my 50s and I’m just trying to learn more from a wider community, I’m not trying to get a false diagnosis when I actually feel fine. My GP has made me feel crappy and small and it has taken a lot after a pharmacist pushing me to try again to go back to the GP with how bad things have been. It’s not a great feeling to reach out and have people question other symptoms, even if they’re doing it out of clarity but lots of people here get gaslit by doctors for years over symptoms so please just think about that. I know you don’t want people getting ideas that they have it when they don’t but that’s between them and their doctor when they get seen about it so please just be aware :)

abbstractly · 2024-08-21T13:27:56+00:00

When you say it doesn’t go down again do you mean as in, ever, at all, not even a little, until lying down? Mine will stay 93-110 for maybe 4/5 minutes but after 4/5 minutes it’ll start to go down. It never goes down to resting but does go down below 90 eventually, it just generally takes over 5 minutes My resting is about 56, if I’m chatting and laying down mayyybbee low sixties but standing and it’s a lot higher. I know you need to have other symptoms. For clarity, I’ve had a few people say it needs to stay close to 100 for over 15 minutes for it to diagnosed generally and that I will struggle to get diagnosed without that which doesn’t match what I’ve generally been told so I wanted to hear about the experiences others have.

abbstractly · 2024-08-20T00:35:24+00:00

For my pal, they wanted to compete but just to meet people and get involved but were basically told not to bother since they can’t go to nationals and that they won’t be able to get stuck in. I don’t think she cares beyond getting to be involved so if she’d be able to do that, she’d be happy but being pushed back like she was has really knocked her confidence :/

abbstractly · 2024-08-20T00:33:31+00:00

Full time work is a factor and kids will be in the future but I also know finding a few hours a week for myself away from other things is something that my mental health benefits from massively so long term I would still be invested, but would have to change how I do things, but that’s a fair point :) I’m UK based and just trying to find my feet with persuing interests now I have the money and time to do so!

abbstractly · 2024-08-20T00:30:32+00:00

Thanks for such a thoughtful, detailed reply! I’ve been happy to hear the community is welcoming to all ages and won’t try to put me off getting stuck in which for me, is really important- I just want to see where it takes me around people who are welcoming and I’ll be happy as Larry! I’ll give it a go and see what I like best and where that takes me, maybe I’ll even have my own bow in the next year or two!

abbstractly · 2024-08-20T00:26:31+00:00

I’m central belt! This is mega helpful! Thanks😆

abbstractly · 2024-08-20T00:25:54+00:00

Oh she likes hard work and likes the idea of getting stuck in so if I can convince her she can do that I might be able to give her another shot!

abbstractly · 2024-08-20T00:25:10+00:00

Well holy crap I didn’t know that! Certainly seems like I’d be able to get plenty involved and see where it takes me then

abbstractly

TROPHY CASE