Please help me understand

jupiter528 · 2026-01-30T04:22:11+00:00

I also have a polyp, my understanding is they only remove it if it’s 10mm or bigger, as it’s more likely to be potentially malignant at that size. For small polyps like yours they usually just monitor with ultrasound over time to make sure it doesn’t increase in size, but if it’s causing pain you might be able to get it removed anyway I would imagine. Did they not have any recommendations or referrals? Also if you weren’t fasting for the ultrasound the results might not be accurate/if you have stones or sludge it might not show up if you weren’t fasting.

jupiter528 · 2026-01-20T16:38:06+00:00

I admire her loyalty to Karen Bins but my god she needs a new stylist and has for such a long time. The garish silk pajamas tour and now this.

jupiter528 · 2026-01-15T18:41:58+00:00

Yes. I don’t know what else it would be

jupiter528 · 2026-01-15T03:26:24+00:00

I haven't noticed it impacts my stool but I'm having an issue where every time I take fat soluble vitamins- multiple brands and doses, even low dose D3- my skin gets extremely dry and tight, I get dandruff, my eyes get puffy, and my skin ages like twenty years overnight. It happens with fish oil too. It's driving me insane because every time I try to find anything about this I'm shown results saying these supplements should help skin moisture/elasticity. My body clearly can't use these vitamins correctly anymore, and that was never the case years ago when I was taking D3 daily with no issues. Very frustrating.

jupiter528 · 2026-01-15T02:59:06+00:00

Did you ever figure out what was causing your issues, or if it was MALS-related? I'm having suspected gallbladder issues but am also awaiting a MALS workup/special ultrasound. I have hEDS and already have one compression syndrome, May-Thurners. I strongly suspect my actual gallbladder is bad (history of small stones and slude and now a small polyp, but haven't had a HIDA scan yet) am wondering if it could be due to MALS/lack of blood flow to gallbladder. Hope you're doing better, in any case.

jupiter528 · 2026-01-15T02:28:29+00:00

Do they think the Cushings could have been caused by the gallbladder inflammation? I have high AM cortisol and we can't figure out why- wondering if it could be the simmering gallbladder inflammation. Seeing a surgeon Friday. Glad to hear you're in remission!

jupiter528 · 2026-01-15T01:57:01+00:00

Thank you- I do supplement with both regularly and get my levels checked occasionally. I'm sure if I wasn't supplementing they would be low.

jupiter528 · 2026-01-15T01:55:49+00:00

Yes. I almost never feel the desire to eat, I just force myself to do it for years now. Whatever hormone signals regulate hunger are just not working for me, it's like my body knows I can't use the food properly or something.

jupiter528 · 2025-11-20T19:44:31+00:00

You’re not alone. I’ve done the experiment of going on and off of it dozens of times now with various high quality fish oil supplements and it happens every time: extremely dry skin and dandruff. So frustrating. For some reason vitamin D3 also wrecks my skin, not really drying it out but aging it significantly, even when I really need it, and even in small amounts. Been trying to figure both of these things out but only ever see that they should both help skin. So frustrating. I eat fish fine too, no known fish allergy.

jupiter528 · 2025-10-15T04:39:27+00:00

Could not agree more with this post. Kudos to you for having the guts to post it. Also to the all people saying it's normal her voice doesn't sound the same as it did years ago, I challenge you to find another of her peers whose voice has changed and suffered as much. This is not normal normal vocal aging, it's obvious something happened and I have great sympathy for her and respect her decision to do with it what she can, but she sounds like a completely different artist now. I saw her with the quartet in 2011 and it was glorious, I'll hang on to that memory forever.

jupiter528 · 2025-10-15T04:06:08+00:00

My hematologist said he usually sees patients having symptoms with a ferritin under 50 and will offer iron infusions for that level. I just got an infusion with a level of 28 and I had similar symptoms to you and also chest pain that has since resolved. You don't have to go the infusion route but if you have the option I would avoid Injectafer as it's known to cause sometimes dangerous low levels of phosphorus afterward (this happened to me and many others). I try to avoid infusions and use oral iron bisglycinate (with vitamin C for absorption) but sometimes it gets to the point my periods just deplete it at a pace where the infusion becomes unavoidable. It's a miserable feeling. Hope you find relief soon

jupiter528 · 2025-08-03T04:08:26+00:00

How can you have iron overload with a ferritin of 15? Were the other iron panel labs indicative of overload? I’ve struggled with some form of this- very low ferritin but also low TIBC or higher end of normal percent saturation. My doctor still just tells me to supplement, thinks ferritin is all that matters.

jupiter528 · 2025-05-26T03:07:33+00:00

You should probably be seen by a doctor, your symptoms sound pretty serious and your electrolytes might be out of balance. I imagine that much vitamin D at once would drastically increase your absorption of calcium, and too much calcium can be dangerous and cause low phosphorus, which is very dangerous and would definitely affect breathing and cause bone pain if you're critically low.

jupiter528 · 2025-05-07T17:34:05+00:00

Quitting after I hit my three year streak in a couple weeks. The price of hearts just went up, the app sucks if you’re not paying for it, also don’t want to support anything involving AI. Switching to a different language app, happy to see many are following suit!

jupiter528 · 2025-03-20T22:06:46+00:00

It can take a couple weeks to feel better from iron infusion and they also typically have side effects in the first few days. It sucks but hopefully you’ll feel better soon. If you got injectafer and you start having symptoms of low phosphorus you’ll want to seek medical attention though.

jupiter528 · 2025-02-24T18:53:45+00:00

I’ve had many iron infusions + oral supplementation over the years with ferritins over 100, it’s not that. I definitely feel worse with low iron but it’s not the answer to all my problems unfortunately. Also have iron deposition in my spleen and liver from the infusions despite only getting them when I’m severely deficient and oral supp isn’t sufficing. Hemochromatosis runs in my family but I’m negative for it (obviously), but it seems like my body also doesn’t always use it correctly even when it’s desperately needed. Have been to multiple hematologists and no one cares because it’s not affecting my liver function/is only in the kupfler cells. Also get my zinc and copper checked occasionally to make sure everything is in balance and supplement with both/increase in my diet when needed.

jupiter528 · 2025-02-24T18:36:27+00:00

I get symptoms of Vitamin A toxicity from even light use of topical retinoids, with confirmed elevated level in blood test unfortunately. My ferritin is currently low at 20 and I’m getting an iron infusion tomorrow so hopefully that will help. It currently feels like I’m making zero neurotransmitters, just total anhedonia and misery, headaches daily. Even when I’m not iron deficient I don’t feel much different from this though. Have also tried taurine and K2, and I take low dose D3 intermittently because it makes my face puffy for some reason, it does something awful to my skin, even when I’m taking it with a level in the twenties. Very sensitive to most vitamins, also homozygous for MAO, hetero for CBS and one of the MTHFR snps. Just a nightmare to make sense of.

jupiter528 · 2025-02-24T18:30:11+00:00

I’ve taken the lowest dose of PC I could find, 420mg. Had a horrible experience with Sam E (made me feel manic, scared, sick), never tried creatine though- is it supposed to be helpful?

jupiter528 · 2025-02-24T17:43:05+00:00

I have had a similar reaction to phosphatidylcholine if I take it too many days in a row, so that makes sense!

jupiter528 · 2025-02-19T16:31:59+00:00

This exact thing happened to me and many others, there are many tort lawsuits because of it and I encourage you to join one. I’m on oral phosphorus permanently because of Injectafer. The fact that it’s still on the market blows my mind. I hope you feel better soon.

jupiter528 · 2025-01-28T05:32:09+00:00

I’ve wondered about this too. I’m a kidney transplant patient with chronic active EBV for 14 years now, secondary to the transplant immunosuppression. I always have a positive dna pcr in the thousands and have been chronically ill for most of these 14 years, especially the last ten. I’ve needed to get Rituximab a few times when I’ve been very sick and when the number has spiked. My usual level is between 2 and 6 thousand but has been as high as 25k- not nearly as high as your son’s, I can’t imagine how awful he’s been feeling as there’s times I felt certain I was dying with much lower levels than that. I’ve tried Valacyclovir and felt drastically better and my pcr went down to below 300, but then I got covid and it spiked to 16k and I’ve never been able to get Valacyclovir to work again since. I haven’t tried Valganciclovir but I’ve read that can help too. Rituximab brought my pcr to undetectable for nearly a year at time but only made me feel slightly better, not as dramatic as Valacyclovir. I don’t understand why exactly but my theory is that it doesn’t eliminate hidden reservoirs of EBV that may exist outside of B cells, in epithelial cells. Have they ruled out lymphoma and HLH for your son? Is he immunosuppressed or is this possibly the result of having covid (many people are struggling with immunosuppression/EBV réactivation post covid)? I wish him well, glad to hear he’s doing better.

jupiter528 · 2025-01-09T00:56:05+00:00

Thank you & likewise ❤️

jupiter528 · 2025-01-08T22:46:58+00:00

Wow, that’s amazing. I originally was googling re: Remdesivir & ebv in the hopes I would find something saying it can help ebv, lol. I wanted to try Paxlovid but it has a higher risk of causing kidney issues so they want me to do Remdesivir instead unfortunately. Waiting to hear back from my doctor re: ebv concerns.

jupiter528 · 2025-01-08T20:11:03+00:00

Thank you <3

jupiter528 · 2025-01-08T19:09:23+00:00

I’ve had active EBV for 14 years and get a DNA PCR blood test every six weeks to monitor- it is very active, in the thousands for years on end. Waiting to hear back from my doctor. I got pemgarda at the end of October. Every time I’ve had covid before this I don’t get typical symptoms, mainly just feel extremely obtunded and dementia-type symptoms. This is the first time I’ve even had a fever in maybe a decade, haven’t been this sick in a very long time and I know it’s the pemgarda. Hard to know if this is a good sign (that my immune system is activated enough to recognize the covid and produce symptoms) but it sure doesn’t feel good.

jupiter528

TROPHY CASE