sue1234

It very well could be.

Can I ask what dose of hydro. you were taking?

Fludrocortisone is a mineralocorticoid, which means it helps you hold onto salt, and thus it holds onto fluid. It is used for low blood pressure. Hydrocortisone is considered a glucocorticoid, which is replacing cortisol itself. It has some mineralocorticoid properties as well. It depends on what you need. If your doctor has found you actually have low cortisol, he can replace it with hydro., but he needs to investigate why it is low. If you only have low blood pressure, the fludro. would be the better choice.

The two DNRS people use is Gupta or Annie Hopper.

I'm thinking of the obvious question, but do you take any anti-depressants or OTC supplements to boost serotonin? If not, your doctor might need to think about Carcinoid and investigate down that path.

How is everyone doing that was on this thread? So far, I'm okay and hunkered down. My new functional med doctor said if I get the symptoms, he will call out Plaquenil and Azithromycin for me.

About five years ago, my 8 a.m. cortisol was trending above range a little, with a high-normal ACTH. Starting two years ago, it started trending down. In the beginning of last year, it was at the bottom of the normal range (around 5) with an ACTH sitting inappropriately low-normal (around 11), and my new endo did a Cortrosyn stimulation test in September. It came back 0.2 points BELOW the cut-off of normal stimulation(18 is the cut-off), but he said I was just fine and it was nothing to worry about. (I beg to differ). From my research, I think I have a pituitary that is not working correctly, so it isn't signalling the adrenal to put out cortisol. That is Secondary Adrenal Insufficiency. When my cortisol began getting lower those two years ago, I also got what I call a new case of having CFS. I used to have POTS but plenty of energy to want to do things but couldn't because of POTS. Now, my POTS is actually better, but I have no energy or drive to do anything.

Have they thoroughly investigated your blood glucose levels, especially for a few hours after eating? Some forms of weight-loss surgery, specifically the Roux-en-Y, can cause people to have severe hypoglycemia. I haven't had weight-loss surgery, but I have had low blood sugar for a few decades, and the symptoms can be what you listed.

@bombsh3ll What's the latest with you? Did you find more help? After reading this whole thread, I personally think POTS is only a symptom of another underlying cause. It is similar to having a fever, as it is just a consequence of something else going on. I will continue to look for the root cause after it POTS came on suddenly 14 years ago.

I'm not sure what you mean by this...are you taking cortisol supplements already, before this low potassium lab test?

Do you know if your cortisol is elevated? Having Cushing's Disease can cause low potassium.

I did not have fatigue when my POTS began, but in the last few years, it has made an appearance and gotten bad. I don't take any meds, so nothing to cause it. It is my most debilitating symptom now.

We already tend to vasodilate from standing in pretty much one space. Add heat from the shower, and it really amps it up faster. When that happens and less blood is getting back to the heart, it makes the adrenals spit out noradrenaline to help vasoconstrict that blood back up to the heart. That is why you get an adrenaline rush. As mentioned, cool showers are better.

Kim, My sister does have the family holiday gatherings now, but I guess I meant that I was always making an effort to be available for various things and be involved within the family, but it seems no one ever does this back. I am not on disability. My husband has a decent job, and I didn't work but a year back in the 90s. I guess after no one in my family wanted to sit down and find out why I can't do anything anymore, I don't feel I want to include them in any of my health issues. I feel like they haven't earned the right to know anything that goes on, because they showed no interest when it began. I normally do fine with them not being involved in my life, but with the elderly parents getting to the point of needing to have life decisions for their care made, I feel guilty for not pitching in and am seeing that my opinions on their care carry way less weight because of my inability to physically help. Since being limited, I see how so many people create drama for things that just are not important or unwilling to accept change. So many gloss over reality, and want to keep life exactly as it is, at any cost. I have no patience for all that anymore. I just want people to be kind to others. Sorry about the excessive rant.