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florinef/blood test results ??

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by BadBadBear, Apr 22, 2013.

  1. BadBadBear

    BadBadBear

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    Hi,

    I am at the start of my diagnosis journey, I have been mildly symptomatic for at least two decades with a sharp decline in my functioning about 6 months ago. I crashed hard in Oct.

    I finally got into a cardiologist, and was put on .2mg Florinef about 2.5 weeks ago for OI. I asked him if I needed any bloodwork, and he said no. I have been salt loading, and if anything, cutting my water back. I am always thirsty, and am trying to keep my water consumption to ~1 gallon per day, left to my own my water consumption is 2+ gallon per day.

    Well, I have been feeling not very good this week so I decided to get my own bloodwork done. Results show that my potassium has dropped from 4.1 before any treatment to 3.7 now.

    Interestingly to me, my sodium was at 141 in Feb., which was before I went on Florinef, and today it's still exactly at 141. Yesterday I consumed 11+ grams of salt and around 150+ fluid ounces of water. My BUN/Creatinine ratio is a little better, it was at 16.1 and now is at 15.2 (still high).

    Does this mean that Florinef + salt loading isn't doing anything, other than trashing my potassium level? If so, I'd love to drop the Florinef. It gives me a headache. I'm still having low blood pressure. The only thing that MIGHT be a tad better is my pre-syncope symptoms. It's hard to tell, though, because I am very careful about not standing up rapidly.

    I did pick up some potassium gluconate, and I sent lab results to my cardiologist and my primary doc. Kind of doubt they'll notice...

    Thanks for any insight about the sodium blood levels!

    - Michelle
  2. lnester7

    lnester7 Seven

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    1) Try to break the pills in half and take it distributively as even as possible and not to take the last dose too late. See if you feel better.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    BadBadBear

    You definitely need to monitor potassium. Florinef is known to lower it in a percentage of patients. A doc should know this!

    Sushi
  4. Ema

    Ema Senior Member

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    BadBadBear

    I've had great luck with Florinef. I've taken doses from .1-.2 mg as well for almost 2 years now.

    Here's what I would say (but I am not a doctor):

    1. 0 to .2 mg of Florinef in 2.5 weeks is way too fast to titrate up. It will give you a dreadful headache as it totally changes the entire fluid balance of your body. If it were me, I would drop back down to .05-.1 mg and work your way back up a quarter of a tab at a time every 7-10 days.

    2. Florinef mainly affects your diastolic BP (the bottom number). It takes at least two weeks to see the effects of a dose because it is such a long acting steroid. Have you noticed any changes in your bottom number? I wouldn't expect it to raise your systolic BP. If systolic is also very low, it could indicate a cortisol deficiency and that is a different type of steroid.

    Do you have a BP monitor at home to take average measurements?

    3. 11 grams of salt is about 2 teaspoons according to Google...does that sound about right? 2 teaspoons of salt is not a huge amount for someone on Florinef. I regularly consume 3-4 teaspoons a day and I have heard of people using up to 3 tablespoons. But that amount would certainly be unusual. I do think you can go up a bit if you like. I try to keep my sodium between 142-144.

    I hope you are using sea salt and not refined table salt.

    http://www.celticseasaltblog.com/th...tm_campaign=Get the Facts About Sodium Intake

    4. 4.5 L of water is about 150 oz. That's on the higher side of consumption but some people just drink more water. I would try not to drink any more than this however. Do you have excessive urination?

    5. I would consider asking your doctor for a prescription for slow release potassium (KDur). 3.7 is way too low in my opinion. I try to keep my potassium at 4.0-4.2 and it takes me 80 mEQ of potassium to do this on .2 mg of Florinef. Florinef is a well known potassium wasting drug. You're going to have a hard time getting enough potassium in 99 mg potassium gluconate capsules in my opinion. Just make sure to regularly get labs while supplementing potassium.

    I had a standing order for a CMP every 2 weeks while I was titrating up on Florinef. Make sure also to get your labs done fasting as well with no sodium or potassium after midnight. This is important because you want to see what your body is holding on to and not what you just consumed.

    Hope that helps! I love Florinef but I know lots of people have trouble with it. I think of lot of that comes from too much too fast. Slowing down really helped me find the minimum effective dose.

    Ema
    voner and ahimsa like this.
  5. BadBadBear

    BadBadBear

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    Thanks Lnester - I think I will cut back as Ema suggested, and then go to trying to distribute the dose as I build back up.

    Thanks Sushi. I will call the cardio's office tomorrow. Maybe there is someone else at the clinic that has worked with POTS patients? I am trying to get moved over to an endocronologist, but that's going to be luck of the draw, too. :(
  6. BadBadBear

    BadBadBear

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    Thanks Ema!

    1. I actually think that starting over with florinef is a good idea, and also getting off of it until the potassium situation is figured out. And yes, titrating up from a lower dose. The cardio had implied that I would probably need the florinef dose bumped up to either .3 or .4 mg. in the next couple of weeks, I will not let that happen. It's going to be hard picking a fight with him right off the bat... :) But I guess I need to, right?

    2. I am not noticing my diastolic number moving much. It's still running below 60 at times (sometimes even when I'm standing). If it's below 60, I almost always feel wiped out. I do have a good BP monitor. I need to download my numbers from the machine and check them against my 'before' florinef numbers to really know if there's a trend.

    3. I think my 11 gram day was about 3 tsp extra above my normal heavily salted food (and broth, and electrolytes :) ). I have been tracking food, water, and salt intake in FitDay. So the water number includes my food intake, too.

    Salt source is cheese salt (for making cheese) which is pure in that it does not contain additives, flowing agents, etc. Also using some Himalayan Salt for trace minerals, but mostly cheese salt. I had a bunch of it on hand from making goat cheese.

    4. I don't know about excess urination. I don't go a lot, but I do know that at night, I usually weigh 5# more than I do by morning! I get up to go once or twice and am somehow losing 5# of water?

    5. I will call and ask for a long acting potassium tomorrow.

    As an aside, I did the DIY tilt test several times over the last week or so, on Florinef and salt loaded and am having a 35 pt. increase in HR within 10 minutes. I'm in slight bradycardia when supine (low to mid 50's) and then up to 90 or so when standing, and it just keeps going up as I stand. I have stopped testing at 115 BPM, not really wanting to pass out at home. Again. :)

    Your post was tremendously helpful, thank you so much!!

    - Michelle

    ahimsa likes this.
  7. Ema

    Ema Senior Member

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    Florinef is a really long acting steroid so I wouldn't worry about breaking up the dose too much. I take 1.5 in the morning and .5 mg at about 8PM and that works fine for me. Although I suspect it really doesn't even matter to split it up that much. If you have issues with excessive nighttime urination, an evening dose can be helpful.

    Ema
  8. BadBadBear

    BadBadBear

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    Bummer. I called the cardio this morning and he said my potassium level is at the low end of normal at 3.7 and does not need to be treated. Banging head against wall now. o_O

    I did make an appointment with someone else at the clinic for my follow up appointment in May, but I really don't have a good feeling about this.

    I'd rather go off Florinef (which seems marginal anyway) than be hypokalemic.
  9. Ema

    Ema Senior Member

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    You can buy slow release potassium OTC by mail from Canada.

    I've used this one several times before:

    http://www.blueskydrugs.com/Product/K-Dur

    I wouldn't give up on Florinef yet personally. But I would cut down and that will probably improve your potassium levels while you wait for the supplemental to arrive.

    Ema
    BadBadBear likes this.
  10. BadBadBear

    BadBadBear

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    Oh, thanks Ema. That's nice, I didn't know we could order from the North w/o a script. :thumbsup:

    I did cut down Florinef to a half tab (.05 mg) today, and will keep on the potassium gluconate for now. It's better than nothing, I suppose.
  11. BadBadBear

    BadBadBear

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    ps. got the K-Dur on the way. Thanks again for that info.
    Ema likes this.
  12. ahimsa

    ahimsa Senior Member

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    Hi BadBadBear (cute name!),

    I'm also on fludrocortisone (Florinef) and some generic prescription version of time released potassium (e.g., like K-Dur or Klor-Con). Adding the potassium really helped me so I hope it helps you, too.

    Another option (perhaps helpful while you're waiting for the K-Dur) is to mix up an electrolyte drink that has extra sodium and potassium. There are recipes for how to mix up these drinks on a couple of PR threads (here's a thread I started on related topic - http://forums.phoenixrising.me/index.php?threads/the-role-of-sugar-in-electrolyte-solutions.22300/ - can't find the other threads with recipes right now). Or you can buy a pre-made version like Pedialyte. I get the unflavored, generic Walgreens version which also has zinc in it.

    One other prescription drug that has helped me a lot is midodrine, a vasoconstrictor. In fact, I was able to cut down my Florinef dosage once I added the midodrine. I have no idea whether it would help you, and some people don't tolerate it well, but I thought I'd mention it in case you want another option to discuss with your cardiologist. Actually, I think I've read about more people who don't tolerate Florinef than who don't tolerate midodrine. So it all depends on the person.

    Best of luck to you!
  13. BadBadBear

    BadBadBear

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    Thanks for the note, Ahimsa! :) I have tried potassium salt in my drink for the last couple of days, and it's killing my stomach. I hope that will pass? It seems like the potassium salt irritates my stomach more than a ground up gluconate tab? Coconut water seems like a decent choice, too?

    I will ask the cardiac nurse that I'm seeing next time about midodrine and see what she thinks... I drank coffee (a lot of it) up until last year, then it started giving me heart palps. I suspect the caffeine vasoconstricted me and kept symptoms at bay until I tapered off of caffeine.

    It all seems so tricky to navigate...

    Anyway, thanks again & have a nice evening.

    - Michelle
  14. BadBadBear

    BadBadBear

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    Ok, a couple more followup questions if anyone is still around...

    First, since I started B12/methylation, I am having tingling feet and hands, like they are waking up. Is this expected? I have had numb hands and feet for a while - in fact, my hands have felt disembodied to me for a while now. When I play piano, I can barely feel them and they always seem slightly alien to me (disembodied hands). Now I'm wondering if this could be directly B12 related? It would be cool if so, I could feel slightly less nuts. :rofl:

    Second, in support of this thought, my blood test from Feb. shows alkaline phos. to be at the lowest end of the range - 39 (range is 39-141). My blood test from this week shows it up a tad at 44. I am reading this also may be a reflection of poor B vitamin absorption?

    Last, today I have had major muscle aches all over - could this be potassium starting to kick in?

    It seems like the feeling is coming back after a long period of numb, and I'm not sure if I like it yet or not. :confused:

    - Michelle

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