Anonymous wrote:I don’t think you need the ER (something that’s been an issue for the past 2 months is not an emergency). But I would consider checking for hyperaldosteronism (either with an endocrinologist or nephrologist)

Building on this, does whatever she uses to supplement her salt intake include potassium as well as sodium?

Anonymous wrote:

Anonymous wrote:This is very concerning, OP because POTS alone should not cause generalized swelling.

It could be cardiac insufficiency, different from POTS, and she would need a cardiac work-up. It could be kidney or liver disease, for which bloodwork of liver enzymes and more extensive kidney function is needed. It could be, if she's slender and not eating correctly, be a form of protein denutrition, in which case you need to ask for albumin bloodwork because you can rule it out based on that number. It could be a number of other things, such as latent tuberculosis or other serious things.

If the swelling is generalized and uncomfortable, she needs to be hospitalized and put on a regimen to reduce the edemas. They will do all the bloodwork and cardiac work-up there.

Me again. I would take her to the ER this weekend, honestly. The problem you face with waiting for a second opinion is that you risk drowning the lungs in water.

Sorry, me again. My father has the same swelling recently and the cardiologist he consulted (because he does have mild insufficiency) told him to go directly to the ER, because she was worried about possible water in or around his lungs. He spent a week in hospital were they did extensive testing and reduced his swelling to just a little in his feet and ankles. They found major protein malnutrition which explained some of the swelling but not all of it. And now he's being seen for possible cancers. It can get really complicated.

Anonymous wrote:

Anonymous wrote:This is very concerning, OP because POTS alone should not cause generalized swelling.

It could be cardiac insufficiency, different from POTS, and she would need a cardiac work-up. It could be kidney or liver disease, for which bloodwork of liver enzymes and more extensive kidney function is needed. It could be, if she's slender and not eating correctly, be a form of protein denutrition, in which case you need to ask for albumin bloodwork because you can rule it out based on that number. It could be a number of other things, such as latent tuberculosis or other serious things.

If the swelling is generalized and uncomfortable, she needs to be hospitalized and put on a regimen to reduce the edemas. They will do all the bloodwork and cardiac work-up there.

Her current doctor seems to be out of their depth. You need a second opinion urgently.

This for sure. This is definitely a moment for medical self-advocacy. And even if you to to ER, you might need to be pushy to ask for them to test for the right things, so don't be shy.

My parents are both doctors, but while they respect the profession they don't just automatically trust any doctor in a medical situation. They have trained me to advocate as well, because you and your DD know her body and history the best.

I don’t think you need the ER (something that’s been an issue for the past 2 months is not an emergency). But I would consider checking for hyperaldosteronism (either with an endocrinologist or nephrologist)

I had this when i was younger - it was a kidney dysfunction and you could test with OTC urine strips that test for protein, but it’s an ER thing for sure if that’s what it is.

Anonymous wrote:This is very concerning, OP because POTS alone should not cause generalized swelling.

It could be cardiac insufficiency, different from POTS, and she would need a cardiac work-up. It could be kidney or liver disease, for which bloodwork of liver enzymes and more extensive kidney function is needed. It could be, if she's slender and not eating correctly, be a form of protein denutrition, in which case you need to ask for albumin bloodwork because you can rule it out based on that number. It could be a number of other things, such as latent tuberculosis or other serious things.

If the swelling is generalized and uncomfortable, she needs to be hospitalized and put on a regimen to reduce the edemas. They will do all the bloodwork and cardiac work-up there.

Me again. I would take her to the ER this weekend, honestly. The problem you face with waiting for a second opinion is that you risk drowning the lungs in water.

Anonymous wrote:This is very concerning, OP because POTS alone should not cause generalized swelling.

It could be cardiac insufficiency, different from POTS, and she would need a cardiac work-up. It could be kidney or liver disease, for which bloodwork of liver enzymes and more extensive kidney function is needed. It could be, if she's slender and not eating correctly, be a form of protein denutrition, in which case you need to ask for albumin bloodwork because you can rule it out based on that number. It could be a number of other things, such as latent tuberculosis or other serious things.

If the swelling is generalized and uncomfortable, she needs to be hospitalized and put on a regimen to reduce the edemas. They will do all the bloodwork and cardiac work-up there.

Her current doctor seems to be out of their depth. You need a second opinion urgently.

Heart. Don't delay.

This is very concerning, OP because POTS alone should not cause generalized swelling.

It could be cardiac insufficiency, different from POTS, and she would need a cardiac work-up. It could be kidney or liver disease, for which bloodwork of liver enzymes and more extensive kidney function is needed. It could be, if she's slender and not eating correctly, be a form of protein denutrition, in which case you need to ask for albumin bloodwork because you can rule it out based on that number. It could be a number of other things, such as latent tuberculosis or other serious things.

If the swelling is generalized and uncomfortable, she needs to be hospitalized and put on a regimen to reduce the edemas. They will do all the bloodwork and cardiac work-up there.

Anonymous wrote:I don't have any specific ideas what it could be, but it's concerning that her doctor isn't taking it more seriously. Personally, I would be thinking about potential kidney function issues, so she might ask for a referral to a nephrologist or an endocrionologist (since that could be the source of a kidney issue).

There are some blood tests that can be indicative of kidney function. Maybe her doctor would be willing to order those, since it's an easy thing ot do.

Thanks for that suggestion - will follow up on that. She has somewhat low creatinine (.51) outside Normal range but doc said it’s not abnormal for her age. He’s also requested TSH testing - thyroid. I’m not seeing results for that yet.

Anonymous wrote:Has she been wearing graded compression tights? That and sleeping with feet elevated could help

Yes she’s been wearing compression tights, or a combo of compression leggings, knee socks and a waist binder. I think she elevates feet, but will reiterate that point to her.

PP again. Also, as a parent I can imagine you are really worried, so I'm sorry that your DD is going through this.

I don't have any specific ideas what it could be, but it's concerning that her doctor isn't taking it more seriously. Personally, I would be thinking about potential kidney function issues, so she might ask for a referral to a nephrologist or an endocrionologist (since that could be the source of a kidney issue).

There are some blood tests that can be indicative of kidney function. Maybe her doctor would be willing to order those, since it's an easy thing ot do.

Has she been wearing graded compression tights? That and sleeping with feet elevated could help

My DD (20) normally is slender but over the past two months has had about 20 pounds of weight gain. No increase in eating/calories, but some reduction in physical activity. She has mild POTS which causes dizziness, fatigue, headache and brain fog. She was on a school trip for two weeks this summer, in the heat, that pushed her symptoms, and the weight gain started after that.

Her doctor said it’s swelling from the increased salt she has to take to mitigate her POTS symptoms. But this seems beyond just typical swelling. She’s had POTS for years without weight gain. It’s all over, not simply pooled at ankles. It’s stretching her skin and making her uncomfortable, and it seems to be continuing to increase. She tried reducing salt for a few days. Swelling didn’t decrease, but POTS symptoms got worse.

Has anyone heard of edema in a young person like this? Other possible causes?