Consider putting her on low carb. You’ll laugh but I bet she’d lose the weight asap

Also, not saying you did not do this, but AI is only so good as the question you enter. If you put in the question “what issues could explain a sudden 20 pound water weight gain in a 20 year old woman with long term, stable
Pots that had not previously caused fluid retention” you’ll find a list of issues to ask your doctors about. Best of luck.

Also DCUM not a great resource on POTS. Try dysautonomia international or the Bateman Horne Center or a POTS clinic. But I would be looking beyond POTS for another issue (is it possible she was misdiagnosed with POTS) or at medication issues.

I dunno OP. I’m an adult with POTS and also salt load and drink a lot of electrolytes. It’s usually because if we don’t our blood pressure is low. I’ve hardly fluctuated 2-3 lbs. I would be really concerned if I gained 20 pounds of water weight and would be reaching out to my cardiologist and other doctors. I read a lot of literature about pots and have never seen swelling or water retention as a concern. Is it possible it’s a side effect of a medication?

This is OP again. A PP suggested I ask AI what’s going on. AI says that overexertion (which happened to DD this summer) can severely worsen POTS dysfunction in regulating blood flow. This leads to increased fluid accumulation throughout the body.

It goes on to say that people with POTS have poor constriction of their blood vessels when standing. This causes blood to pool. Increased pressure from this pooling forces fluids to leak from blood vessels into the surrounding tissues.

The shift of fluids out of blood vessels into tissues results in low circulating blood volume, which further exacerbates POTS symptoms.

AI recommends the usual things like compression hose, keep feet elevated, increase water and salt. DD also regularly goes for therapeutic massage, which seems to help with circulation. She has been trying not to over exert, and will have to be even more careful.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do you know it is edema and not just weight gain?

OP didn't give her DD's starting weight, but the rule of thumb is that more than a 5% increase in weight in a month needs to be investigated as more than just weight gain.

If her DD's starting weight was 120, 20 lbs would be a nearly 17% increase in weight over two months, certainly a red flag. If her starting weight were 150, it would be 13%, still over the 5% a month rule of thumb.

Good info— OP, what was your daughter’s starting weight? Is she using the same scale every day? Does she have pitting edema ( skin indents after pressing on it)?

Starting weight 120 and now 140. It is very noticeable that her face and body look bigger. Her regular clothes are very tight or don’t fit now. The edema is mildly pitting. For example a handbag leaves a mark on her shoulder. All of this is known by her primary care because she’s gone in four times just for this issue. Three separate doctors have seen her there, plus the ER doctor.

Her weight gain is proportionate and at 5’5” she doesn’t look overweight, so I’m wondering if that’s why this isn’t raising alarms in the doctors. But with a closer look you can see dimpling, puffiness, lack of tone and overall increase in size that are not typical for her.

Calling around to cardiologists this morning.

A cardiologist is a good choice. However, make sure they take into account a possible kidney angle and test for that (or do it yourself online as suggested above). Remember that specialists tend to look at things through the lens of their specialty.

Kidney values so far seem normal: BUN 11, eGFR 132, creatinine .56, BUN/creatinine ratio 19.6, no protein in urine. The high eGFR seems to indicate good kidney filtration. Will continue to ask doctors about this.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do you know it is edema and not just weight gain?

OP didn't give her DD's starting weight, but the rule of thumb is that more than a 5% increase in weight in a month needs to be investigated as more than just weight gain.

If her DD's starting weight was 120, 20 lbs would be a nearly 17% increase in weight over two months, certainly a red flag. If her starting weight were 150, it would be 13%, still over the 5% a month rule of thumb.

Good info— OP, what was your daughter’s starting weight? Is she using the same scale every day? Does she have pitting edema ( skin indents after pressing on it)?

Starting weight 120 and now 140. It is very noticeable that her face and body look bigger. Her regular clothes are very tight or don’t fit now. The edema is mildly pitting. For example a handbag leaves a mark on her shoulder. All of this is known by her primary care because she’s gone in four times just for this issue. Three separate doctors have seen her there, plus the ER doctor.

Her weight gain is proportionate and at 5’5” she doesn’t look overweight, so I’m wondering if that’s why this isn’t raising alarms in the doctors. But with a closer look you can see dimpling, puffiness, lack of tone and overall increase in size that are not typical for her.

Calling around to cardiologists this morning.

A cardiologist is a good choice. However, make sure they take into account a possible kidney angle and test for that (or do it yourself online as suggested above). Remember that specialists tend to look at things through the lens of their specialty.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do you know it is edema and not just weight gain?

OP didn't give her DD's starting weight, but the rule of thumb is that more than a 5% increase in weight in a month needs to be investigated as more than just weight gain.

If her DD's starting weight was 120, 20 lbs would be a nearly 17% increase in weight over two months, certainly a red flag. If her starting weight were 150, it would be 13%, still over the 5% a month rule of thumb.

Good info— OP, what was your daughter’s starting weight? Is she using the same scale every day? Does she have pitting edema ( skin indents after pressing on it)?

Starting weight 120 and now 140. It is very noticeable that her face and body look bigger. Her regular clothes are very tight or don’t fit now. The edema is mildly pitting. For example a handbag leaves a mark on her shoulder. All of this is known by her primary care because she’s gone in four times just for this issue. Three separate doctors have seen her there, plus the ER doctor.

Her weight gain is proportionate and at 5’5” she doesn’t look overweight, so I’m wondering if that’s why this isn’t raising alarms in the doctors. But with a closer look you can see dimpling, puffiness, lack of tone and overall increase in size that are not typical for her.

Calling around to cardiologists this morning.

My husband had weird symptoms and was sent around to a bunch of doctors, all of whom were convinced he had some random, exotic infection. He was in and out of the hospital all summer and basically ill for 2 years. It was awful. I thought he was dying. Thanks to a friend's recommendation, we ended up seeing this doctor who happens to be a cardiologist - https://www.doctorhashemi.com/.

You know that show, Dr House? It was just like that. He went over all the lab results, took our case really seriously. Listened to my husband and then listened to my side of things. Read through the entire case - and then said, "Aha! He doesn't have an infection! He has ..." All he needed was steroids for 2 weeks and he is back to full health. If you need a doctor to solve a medical mystery, I highly recommend him.

Excellent, thank you!

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do you know it is edema and not just weight gain?

OP didn't give her DD's starting weight, but the rule of thumb is that more than a 5% increase in weight in a month needs to be investigated as more than just weight gain.

If her DD's starting weight was 120, 20 lbs would be a nearly 17% increase in weight over two months, certainly a red flag. If her starting weight were 150, it would be 13%, still over the 5% a month rule of thumb.

Good info— OP, what was your daughter’s starting weight? Is she using the same scale every day? Does she have pitting edema ( skin indents after pressing on it)?

Starting weight 120 and now 140. It is very noticeable that her face and body look bigger. Her regular clothes are very tight or don’t fit now. The edema is mildly pitting. For example a handbag leaves a mark on her shoulder. All of this is known by her primary care because she’s gone in four times just for this issue. Three separate doctors have seen her there, plus the ER doctor.

Her weight gain is proportionate and at 5’5” she doesn’t look overweight, so I’m wondering if that’s why this isn’t raising alarms in the doctors. But with a closer look you can see dimpling, puffiness, lack of tone and overall increase in size that are not typical for her.

Calling around to cardiologists this morning.

My husband had weird symptoms and was sent around to a bunch of doctors, all of whom were convinced he had some random, exotic infection. He was in and out of the hospital all summer and basically ill for 2 years. It was awful. I thought he was dying. Thanks to a friend's recommendation, we ended up seeing this doctor who happens to be a cardiologist - https://www.doctorhashemi.com/.

You know that show, Dr House? It was just like that. He went over all the lab results, took our case really seriously. Listened to my husband and then listened to my side of things. Read through the entire case - and then said, "Aha! He doesn't have an infection! He has ..." All he needed was steroids for 2 weeks and he is back to full health. If you need a doctor to solve a medical mystery, I highly recommend him.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do you know it is edema and not just weight gain?

OP didn't give her DD's starting weight, but the rule of thumb is that more than a 5% increase in weight in a month needs to be investigated as more than just weight gain.

If her DD's starting weight was 120, 20 lbs would be a nearly 17% increase in weight over two months, certainly a red flag. If her starting weight were 150, it would be 13%, still over the 5% a month rule of thumb.

Good info— OP, what was your daughter’s starting weight? Is she using the same scale every day? Does she have pitting edema ( skin indents after pressing on it)?

Starting weight 120 and now 140. It is very noticeable that her face and body look bigger. Her regular clothes are very tight or don’t fit now. The edema is mildly pitting. For example a handbag leaves a mark on her shoulder. All of this is known by her primary care because she’s gone in four times just for this issue. Three separate doctors have seen her there, plus the ER doctor.

Her weight gain is proportionate and at 5’5” she doesn’t look overweight, so I’m wondering if that’s why this isn’t raising alarms in the doctors. But with a closer look you can see dimpling, puffiness, lack of tone and overall increase in size that are not typical for her.

Calling around to cardiologists this morning.

Definitely a good idea. That's not weight that's fluid and needs to be investigated. They should also test her kidneys and get her liver enzymes.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do you know it is edema and not just weight gain?

OP didn't give her DD's starting weight, but the rule of thumb is that more than a 5% increase in weight in a month needs to be investigated as more than just weight gain.

If her DD's starting weight was 120, 20 lbs would be a nearly 17% increase in weight over two months, certainly a red flag. If her starting weight were 150, it would be 13%, still over the 5% a month rule of thumb.

Good info— OP, what was your daughter’s starting weight? Is she using the same scale every day? Does she have pitting edema ( skin indents after pressing on it)?

Starting weight 120 and now 140. It is very noticeable that her face and body look bigger. Her regular clothes are very tight or don’t fit now. The edema is mildly pitting. For example a handbag leaves a mark on her shoulder. All of this is known by her primary care because she’s gone in four times just for this issue. Three separate doctors have seen her there, plus the ER doctor.

Her weight gain is proportionate and at 5’5” she doesn’t look overweight, so I’m wondering if that’s why this isn’t raising alarms in the doctors. But with a closer look you can see dimpling, puffiness, lack of tone and overall increase in size that are not typical for her.

Calling around to cardiologists this morning.

Anonymous wrote:

Anonymous wrote:Do you know it is edema and not just weight gain?

OP didn't give her DD's starting weight, but the rule of thumb is that more than a 5% increase in weight in a month needs to be investigated as more than just weight gain.

If her DD's starting weight was 120, 20 lbs would be a nearly 17% increase in weight over two months, certainly a red flag. If her starting weight were 150, it would be 13%, still over the 5% a month rule of thumb.

Good info— OP, what was your daughter’s starting weight? Is she using the same scale every day? Does she have pitting edema ( skin indents after pressing on it)?

Anonymous wrote:Do you know it is edema and not just weight gain?

OP didn't give her DD's starting weight, but the rule of thumb is that more than a 5% increase in weight in a month needs to be investigated as more than just weight gain.

If her DD's starting weight was 120, 20 lbs would be a nearly 17% increase in weight over two months, certainly a red flag. If her starting weight were 150, it would be 13%, still over the 5% a month rule of thumb.

Anonymous wrote:That’s a great idea to order tests ourselves. I have been looking tonight for a few more cardiologists we can call to try to get in sooner.

One PP had asked if DD had increased salt and water intake. She is taking a few salt pills per day and adds salt to food. She drinks a lot of water. This helps mitigate POTS symptoms, but undoubtedly is not helping when it comes to water retention.

But is she drinking more water and taking more salt than she was before the edema started? If not, then it wouldn't be related.

Is she using college clinic doctors?