Anonymous
Post 09/15/2025 13:21     Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:OP, at this point, I'd get in the car (or on the train / plane) and go to DD and go back to ER with daughter. Mine is 19 also has POTS, and if that was the message I received from her, I'd be on the train to NY asap, because they aren't taking her seriously.



Thanks PP. I can see the notes, labs etc in her My Chart. The basic gating tests came back normal, so cannot pass Go via the ER route. I was on the phone with the doctor while she was there and requested these things (echo, US, neph labs). There is no mention of any of this in the treatment notes. They did note that she was tachycardic (pulse 115) when she came in, but it later resolved and seems they chalked that up to anxiety.

She does have an appointment on Wednesday with a doctor who specializes in treating girls up to age 25 for conditions impacting that age group. Not covered by insurance but hoping we can get some answers and more test referrals from this approach.
Anonymous
Post 09/15/2025 13:06     Subject: Sudden onset water weight gain in 20 y.o.
OP, at this point, I'd get in the car (or on the train / plane) and go to DD and go back to ER with daughter. Mine is 19 also has POTS, and if that was the message I received from her, I'd be on the train to NY asap, because they aren't taking her seriously.

Anonymous
Post 09/15/2025 12:59     Subject: Re:Sudden onset water weight gain in 20 y.o.
This is OP. Daughter went to the ER yesterday at my urging. Basic labs (including thyroid) and EKG were normal so they wouldn’t pursue or refer for further tests like echo, ultrasound around lungs, nephrology work up etc. They didn’t have an answer or concern about the 20 lb water weight gain, other than they noted edema BLE in her chart. The primary complaint they noted is anxiety. This has been our experience with POTS for the past 8 or so years. No answers and mostly all in the head (except that there is in fact edema and 20 lb of unexplained weight gain in 2 months).
Anonymous
Post 09/15/2025 12:44     Subject: Re:Sudden onset water weight gain in 20 y.o.
OP--Any follow up?
Anonymous
Post 09/13/2025 16:14     Subject: Sudden onset water weight gain in 20 y.o.
If it's a cardiac or kidney issue not POTS only the estra extra salt may not be a good thing.
I hope OP and DD get help.
OP let us know what happens.
Anonymous
Post 09/13/2025 15:54     Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.

Will take all of this to cardiology and see about a hepatology.

The fact that her BW is coming back normal while her symptoms remain so severe is actually a cause for concern, not the other way around. It means something is getting missed. I've seen PCPs do this before, serially chasing diagnoses they are not qualified to chase, and the consequences can be severe. Happened to me, though much less dire situation. I'm not trying to scare you, but my father is a cardiologist and he has seen patients die when a PCP overrode his recommendation to get an immediate cardiac work up in favor of whatever the PCP decided was more urgent or a less aggressive way to approach things.

In a situation like your DD's a full workup is the right thing to do medically, and in the US the fastest way to get this is going to the ER. Waiting months for various specialists can be harmful, and the care still won't be coordinated.

She has had POTS her whole life, and presumably treating with salt pills her whole life. This has never happened before, so the assumption that it is somehow related to something she's been doing her whole life without any obvious difference now is very odd.


Thank you PP. Your insights are very helpful. I should add that DD did have some weight on her in the age 12-13 years. I chalked it up to puberty because I myself got pudgy, then thinned out in high school. I never reverted to weight gain. Reflecting back, she did slim down rather quickly over the course of a year at about age 14, but no one raised it as an issue. She was diagnosed with POTS during that window when she was heavier, followed exercise and POTS management protocols and had been slender and relatively fit for about 6 years. Now she has had this flare and sudden edema.

Edema and pudginess are not the same thing. Rapid increase on the scale and swollen ankles suggest edema, not fat/weight gain.
Anonymous
Post 09/13/2025 15:48     Subject: Sudden onset water weight gain in 20 y.o.
You keep citing tests from July and weeks ago. They are not an accurate picture of what's going on now.

Please get her to the ER.
Anonymous
Post 09/13/2025 15:45     Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:
Anonymous wrote:20 pounds of water is two gallons her body cannot eliminate and is potentially sloshing around her cardiovascular system and lungs.
Has she even had a recent EKG? The ER will do one in triage.


Two EKGs done in July 2025 were normal. She does have low blood pressure and, if understand correctly, low blood volume due to POTS. Agree with everyone, I’m trying to get her to go in to the urgent clinic associated with the local university hospital ER where she is.

I fully understand where your DD is coming from and what you are navigating yourself. This is scary, and ER's are awful places...especially on weekends. But let me reflect back to you a few things.

Your DD has shared with you all the details of her care and labwork. This suggests that she is concerned and wants help with this situation. You know this is well outside of normal, even though she has a chronic disease. You don't have faith in her PCP, and you are trying to direct her care from far away. You have gotten to the point where you are asking random internet strangers for advice on how to do this.

The situation is very serious, and your DD isn't getting the care she needs. Not to be alarming, but if kidney function is abnormal, it can lead to blood toxins that might even be impacting how your DD thinks. If you can convince her to go to the ER on her own, that would be great. Otherwise you might need to drive/fly out there and take her. I'm pretty sure (having been a stubborn college kid myself), that if you showed up she would not resist going.
Anonymous
Post 09/13/2025 15:44     Subject: Sudden onset water weight gain in 20 y.o.
Lupus perhaps
Anonymous
Post 09/13/2025 15:39     Subject: Re:Sudden onset water weight gain in 20 y.o.
Fly to wherever she is and take her to the ER. As PPs have said, this is likely either a reasonably serious heart or kidney issue. In either case, it need intensive immediate medical attention.

This is a case where a parent has to step in, even if they are the total opposite of a helicopter parent.
Anonymous
Post 09/13/2025 15:28     Subject: Re:Sudden onset water weight gain in 20 y.o.
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:This is OP. Her albumin is normal (4.5 g/dL), globulin also normal (1.7 g/dL) but a/g ratio is slightly high at 2.6. Doc said that was not abnormal. Total protein 6.2 g/fL and creatinine .51 mg/dL also slightly low but doc said no worries.

Will take all of this to cardiology and see about a hepatology.


make sure they also do urine protein/creatinine ratio--the most sensitive test if one is loosing protein in kidneys-which would cause swelling, happens in autoimmune illness,


eGFR CKD is 136, which shows on the report as normal. Not sure is that’s derivative of the ratio referred to above.


eGFR is not derivative of the urine protein/creatinine ratio. 136 eGFR is normal for a young person (it naturally goes down with age). You can have a totally out of whack urine/protein creatinine ratio with a normal for age eGFR as I do.
Anonymous
Post 09/13/2025 15:24     Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:
Anonymous wrote:20 pounds of water is two gallons her body cannot eliminate and is potentially sloshing around her cardiovascular system and lungs.
Has she even had a recent EKG? The ER will do one in triage.


Two EKGs done in July 2025 were normal. She does have low blood pressure and, if understand correctly, low blood volume due to POTS. Agree with everyone, I’m trying to get her to go in to the urgent clinic associated with the local university hospital ER where she is.


You need to take her to a full-service hospital, because that's what she needs. She needs a full cardiac work-up and ultrasound to see where the water is and whether her lungs are being infiltrated. She will have extensive bloodwork onsite, with some tests that might not be routine in a small lab.

Big guns, OP. It's counterproductive to take her to a smaller place. It's better to hit all the suspected diagnoses at once and pay for it now, than linger with doubts and maybe end up in a life-threatening situation down the road.

I know you don't want. But you need to.

Anonymous
Post 09/13/2025 15:18     Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:
Anonymous wrote:20 pounds of water is two gallons her body cannot eliminate and is potentially sloshing around her cardiovascular system and lungs.
Has she even had a recent EKG? The ER will do one in triage.


Two EKGs done in July 2025 were normal. She does have low blood pressure and, if understand correctly, low blood volume due to POTS. Agree with everyone, I’m trying to get her to go in to the urgent clinic associated with the local university hospital ER where she is.


NOT the urgent clinic, OP. The ER.
Anonymous
Post 09/13/2025 15:12     Subject: Sudden onset water weight gain in 20 y.o.
Anonymous wrote:20 pounds of water is two gallons her body cannot eliminate and is potentially sloshing around her cardiovascular system and lungs.
Has she even had a recent EKG? The ER will do one in triage.


Two EKGs done in July 2025 were normal. She does have low blood pressure and, if understand correctly, low blood volume due to POTS. Agree with everyone, I’m trying to get her to go in to the urgent clinic associated with the local university hospital ER where she is.
Anonymous
Post 09/13/2025 15:05     Subject: Sudden onset water weight gain in 20 y.o.
20 pounds of water is two gallons her body cannot eliminate and is potentially sloshing around her cardiovascular system and lungs.
Has she even had a recent EKG? The ER will do one in triage.