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FarmerAmy

Hypovolemia: What Is The Treatment When Florinef Doesn't Work?

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I am looking into hypovolemia once again. I think that is a large part of the problem for me. When I read about hypovolemia, they talk about plasma renin, angiotensin II , and aldosterone. Florinef is supposed to replace aldosterone and thereby increase blood volume. But we all know that Florinef does not work for a lot of us--and I never see that acknowledged in writing.

I am about to try doing IVs to increase my blood volume. Is this the main thing you do when Florinef is not effective?

I had an IV a year ago--right after my tilt table test. I felt fantastic within about half an hour of having the IV. But my cardiologist said that they don't give people IVs on a regular basis, so I gave up on that idea.

But I just had an appointment with my current doctor (who practices Functional Medicine) and asked her about IVs. She is now working on referring me to a center that will do regular IVs for me. I am very excited about the prospect of feeling fantastic again--even if it is only for a limited time.

But now I feel confused after reading about hypovolemia again. I will definitely pursue the IVs, but is there something else I should be pursuing as well? It seems like there should be some other way to increase blood volume. I'd love some input from anybody who understands this better than I do!

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I would say that one should ask their doctor about increasing the dosage of Florinef and ask about taking in salt water.

IVs are not without risk in fact, they can be quite dangerous not to mention time consuming.

Florinef will accomplish the same task but in a much more manageble way.

I'm currently on .1 mg. I notice if I take in about 3 glasses of physiologic water (concentration of salt mixed with water) it relieves my lightheadedness for a little while (before I pee it out again).

I'm going to be titrating this up to .2 mg

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I also started on Fludrocortisone and was unable to tolerate it. IVs are great but only temporary- I get maybe 24 good hrs so I typically use this as a preventive measure (before flight, dental work or an important event) or a recovery measure when I'm in a bad flare and can't seem to get out of it on my own.

Fluid intake is key for me. Gotta drink lots (2 ltr min- average of 3) of non-carbonated fluids. 1/2 is usually water but the other half is a mix of Gatorade, vitamin water, coconut water, coffee, almond milk, V8, green juice, other fruit juice etc. This has been important for me as drinking all water will dilute me and make me more symptomatic. I also still heavily salt my foods, go w a salted rim when possible, but I've cut back some on that since getting the MCAS Dx. Still doing it, but just not as much.

I also wear an abdominal binder every where I go- never leave home without my SPANX. That helps.

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Jangle, when you say the IV can be dangerous, what do you mean? I'm aware of risks such as infection, venous insertion / maintenance issues and sodium balance concerns. Are there other risks you are referring to?

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Hmmm....thanks for the feedback. Jangle, you are making me think about revisiting Florinef and salt intake. I was taking 0.1mg of Florinef for 3 months and did not notice any difference at all. But maybe I should ask my doctor about trying again with a higher dose??? Does anybody know what the range of doses is for Florinef?

I was also taking salt pills, but stopped that in the last few weeks--again, because they didn't seem to do anything for me. I took 2,000mg per day for a few months, then I dropped down to 1,000mg per day for about a year. Then, like I said, I stopped recently. I didn't notice any difference one way or the other.

I was drinking a ton of fluids for a while. I was up to 3L per day of electrolyte drinks (a few different kinds--all without sugar). But again, I stopped pushing the fluids because it didn't seem to do anything. In fact, drinking a ton was making me more miserable--my bladder was constantly full and it felt like I spent half my day going to the bathroom. I still stay hydrated, but I don't force myself to drink as much anymore.

I'm now wondering if I gave up too easily or if these things really just don't work for me. My symptoms are worse if I get dehydrated, so I make sure that doesn't happen. But honestly, I did not notice the slightest improvement with Florinef, salt pills, or electrolyte drinks.

I still plan to try the IV. I feel like that will give me a clear indication if hypovolemia is my problem. Then I guess I need to figure out the best way to address the problem.

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Have you used the salt, water and florinef at the same time? For florinef to work optimally as a volume expander, it needs to be taken with salt and water. I have severe hypovolemia and take 0.2 mg florinef daily and 12-15 tabs 1000 mg NaCl daily and a lot of water.

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OK, so I'm getting the picture that maybe I need to try again. Yes, I have taken 0.1 mg florinef, 3L of water or electrolyte drink, and 1000 mg NaCl all at the same time. But maybe I really need to boost the levels of the florinef and salt.

Can I ask how you know that you have severe hypovolemia? I'm just assuming I have hypovolemia based on several things:

--Liquids seem to go right through me.

--I felt so much better the one time I had an IV.

--My symptoms are a lot worse when I am a little dehydrated.

Edited by corina

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I had blood volume analysis done at Mayo. But I knew before the testing because my weight dropped from my usual 104 to 97# in just a few days, I would spontaneously diurese what looked like water, 10 gm sodium diet and subsequently florinef helped me greatly, etc

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FarmerAmy - I think the salt tabs that HyperPOTS8 is taking have 1000mg NaCl and about 450 mg of sodium. So it is not 12-15 grams of sodium a day like you might think (that is what I thought when I first bought these salt tabs!) - more like 5.4 to 6.75 grams a day. Didn't want you to get the wrong idea! :)

Also, I have the same problem - I am not positive I have hypovolemia, but I too take florinef (.2 mg for me), lots of salt, lots of water/gatorade....and NO difference in my symptoms. Though I do get worse when I am really dehydrated.

I hope you feel better soon!

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My doctor has told me to eat 10 grams of salt every day, so I measure it out each morning and make sure I eat it throughout the day. Just make sure you drink enough water. You need plenty of both for the Florinef to work.

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I had my first IV on Saturday and I thought I would report back to the group. I did 1 liter of LRs in the afternoon. I didn't know what to expect after the IV and I was very anxious to feel the results. I felt significantly less lightheaded for about 24 hours. This was the first time in over a year that my lightheadedness had lifted, so I was a little out of sorts and didn't know what to do with myself. I was upright for a lot of the day and it made me notice how weak I've become. My body is no longer used to the effort it takes to stay upright. But it did feel really nice to be able to sit and stand for a lot longer than usual!

I plan to do at least a few more IVs and see how I feel. I realize that I need to make sure to get some additional activity while I feel the effects of the IV in the hopes of rebuilding some strength. I'll also put some more thought into starting the florinef and salt pills again.

If none of this helps, I will follow your prescription, Ashelton80 :)

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In the types of POTS and OI where low blood volume seems part of the problem (and rarely is it the whole problem as in Low Flow POTS there was hypovolumia and other issues and in NET there might also be hypovolumia) evidence suggests that there is a problem with sodium handling. This may mean that salt and volume loading without medications to enhance blood volume may do little longterm.

IV saline works wonders for many but not all. For me it was quite amazing.

Other options for blood volume for those that do not respond to florinef are licorice extract, EPO and there are (apparently) some chinese herbs that can increase blood volume. Florinef is the first choice though simply because it enhances the hormone that at least in some is supressed because of POTS. Kidney dopamine salt handling is also implicated.

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