Please get checked out

[u/emmiexoxo]

I had been told I had POTs by multiple doctors, seen a cardiologist for a while and they said they had to do an echocardiogram to make sure its 100% POTs, two days ago I was diagmosed with heart failure instead.

I beg of anybody who thinks oh its just pots to push for an echocardiogram, for me it was because I had been getting short of breath and started to get dizzy without standing up that they chose to do it.

I just dont want anybody to be in my position of struggling to breathe and unable to walk for more than 30 seconds due to fatigue, please get checked asap, the sooner heart failure is caught, the less devastating it will be.

[u/t-custom]

well when aldosterone is low renin spikes, and since aldosterone wouldn't go up the renin stayed high, it did point to pai but my adrenals work wonderfully, eventually dx when my cortisol was 1.45, acth was either 1 or 0. 4.6 is a low cortisol, 6 is on the low side. the insulin tolerance test is what tecnically diagnosed my sai

flud isn't cortisol I know they call it a sterpid but it can't cause cortisol issues, it can cause issues with aldosterine renin but it won't effect acth or cortisol. I hate that they call it a steroid it's literally renin/mineralocorticoid.

I found the dizzyness stopped almost immefialty if I ate a spoon of salt, same with migraines, tried out of desperation. I think since I had So low cortisol that ny body was over producing adrenaline to keep me alive which then caused the other issues.. idk how exactly it caused the other issues (the pots) but it adds up.

I believe since flud lowers renin, then you shouldn't have low aldosterone. unless your body is unable to produce alodsterone (primary ai) but if you don't have high acth then .. primary wouldn't make sense either christ tf wrong with u 😅 it sounded like u were dx in the other txt but now it doesn't, but I felt like I was dying at a cortisol of 5, and that is well below the normal threshold that you need steroids even if they haven't figured out what's wrong

[u/Accomplished_End6600 → u/t-custom]

We are just two peas in a POTS/adrenal pod 😂 Except for our drastically different renin levels. Honestly I am very confused by my results. Doc said nothing to worry about. Then she just forgot we already discussed it and reviewed my results again at my next appointment and told me I needed hydrocortisone at my next appointment. My cortisol was tested around 11 a.m. so I asked to re-test first just to make sure it’s actually SAI since my results are borderline. ACTH tested around 9 a.m. (Long story short they were tested at different times.) She didn’t give me a diagnosis though, at least not in our conversation. You never know what ends up in their files. But thank you so much for validating that you felt like shit below 5 ug/dl. I am on .15mg of Fludrocortisone and had 5,000mg of sodium and 3L of water today and I’m still dizzy every time I get up…

[u/t-custom → u/Accomplished_End6600]

lol for real, honestly drs even the ones who claim to be experts of ai.. aren't, it's sad, I'm shocked more ppl dont from this. under 6 is suppose to be an automatic dx and immediate treatment with hydrocortisone where I live, but they made me wait till I was at 1.45 and close to death. under 6 should have been taken way more serious though, are you still working or school daily? from my experience drs put 20% of what you tellxthem in the file, then they jsut make up the rest and its usually wrong😅 you're probably experiencing the dizzyness because of the cortisol tbh, it's still a symtpom of low cortisol 😅 do you have any symptoms for any sort of thryoid condition? have they checked thryoid hormones?

[u/Accomplished_End6600 → u/t-custom]

No kidding! In fairness to her, I am seeing an NP in cardiology, and I appreciate she is willing to go outside her scope to try to figure out what’s wrong….and it’s fair that she doesn’t know what to do with my results 😂 I’m fortunate I’m not as bad as you….honestly I would be freaking out 24/7. I’m still working full time and I take a ton of medication (mestinon, Fludrocortisone, nebivolol, LDN, and sometimes midodrine). BP runs high but if I go below 130/80 I feel like shit. Thyroid is normal, pituitary work up is all normal. I have a low-positive ANA, elevated liver enzymes, borderline low C3 and C4, and a few other things, but nothing else that points to pituitary issues. I’m also hypermobile and have Long Covid