kitchmill Posted April 14, 2008 Report Share Posted April 14, 2008 I tend to find that my side effects never match what the medications list, and maybe that's just another one of the lovely side effects of POTS! My cardiologist put me on a low dose of Florinef about 2.5 months ago, and I started feeling extremely hypothyroid (extremely fatigued, constipated, brittle nails, getting sick constantly). I called my endocrinologist and had her run the usual thyroid panel, which showed my thyroid was well within the normal range, so I concluded that it had to be the Florinef. I read through all of the info I could find but didn't see any of these symptoms listed, but since I took myself off of it I have been feeling better. POTS events have returned a bit (still mostly controlled by the beta blocker - Florinef was meant to be an added bonus) but I have to weigh the rest of my health.So, what other side effects does everyone else get?Thanks!Rachel Quote Link to comment Share on other sites More sharing options...
dsdmom Posted April 14, 2008 Report Share Posted April 14, 2008 I couldn't tolerate Florinef at all - I felt very weird. Like I wasn't in my body. Again, a side effect not listed, but as soon as I stopped, that feeling went away. I also just felt crappy in general - can't really describe it. Quote Link to comment Share on other sites More sharing options...
darren Posted April 14, 2008 Report Share Posted April 14, 2008 I did not tolerate florinef either. It gave me daily migraines and made my face round like a ball. I've pretty much come to the conclusion that unless I can definitively tell the medication is helping me I don't take it because the side effects give me so many problems. An example is when you hear someone say, "I think its helping me". If I don't know I stop taking with it. I've gotten to the point where I was just over medicated. I take midodrine, ambien and my synthroid now. That's it. Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 14, 2008 Report Share Posted April 14, 2008 Hi,Muscle pain, muscle weakness, joint pain. Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted April 14, 2008 Report Share Posted April 14, 2008 I gained 16 pounds in 4 days... it was water weight and I literally gurgled when I breathed. My helpful (NOT!) doctor told me to "keep taking it for a month or so - let your body get used to it!"Uh... yeah! I took myself off of it immediately. Quote Link to comment Share on other sites More sharing options...
pat57 Posted April 14, 2008 Report Share Posted April 14, 2008 gave me headaches and High BP. Quote Link to comment Share on other sites More sharing options...
mrsdavidson8605 Posted April 14, 2008 Report Share Posted April 14, 2008 I also gained weight and felt more "revved up". I also had trouble sleeping on it. I hated it!! Quote Link to comment Share on other sites More sharing options...
kitchmill Posted April 14, 2008 Author Report Share Posted April 14, 2008 I couldn't tolerate Florinef at all - I felt very weird. Like I wasn't in my body. Again, a side effect not listed, but as soon as I stopped, that feeling went away. I also just felt crappy in general - can't really describe it.Yeah, that pretty much sums it up! Crappy in general. No one else understands it. I've tried a million different terms to describe it, but no one gets it.Ok, glad I took myself off of it. Now I have to get back to my cardiologist for some other options. Quote Link to comment Share on other sites More sharing options...
sarct Posted April 14, 2008 Report Share Posted April 14, 2008 I tried florinef as well and blew up like a balloon. All water weght. It also gave me killer headaches. I felt horrible. Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 15, 2008 Report Share Posted April 15, 2008 I took it when I was going through a really rough period, following GB surgery. I couldn't eat, lost 20lbs, etc. Initially, it made me feel so much better. I got my appetite back, I had energy. My POTS symtoms improved. Then, my pitifully low BP got too high- it went from 80/50 to 140/90. I started putting on weight, and my face also got rounder. Nothing has ever helped me as much as florinef. I keep it in my "arsenal" for a boost during really bad periods, post-surgery, etc. Next time I will consider a lower dose, maybe every other day. Bad side effects- Yep. Did it work? Yep!Julie Quote Link to comment Share on other sites More sharing options...
Megan Posted April 15, 2008 Report Share Posted April 15, 2008 I have to stay on a low dose of florinef so my bp doesn't skyrocket, but at a low dose it definitely helps.Meg Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted April 16, 2008 Report Share Posted April 16, 2008 Florinef is not a picnic, but the side effects, for me, is not as severe as POTS is. I am on a full metal dose (0.4/day) and without it I am in bed. I'm pretty much willing to put up with anything if the nausea will just go away (even to a small extent). Quote Link to comment Share on other sites More sharing options...
ellen Posted April 17, 2008 Report Share Posted April 17, 2008 OK, after nine years of .1 mg, wounds don't heal as quickly. Carbohydrate intolerance- I can't eat alot of sweets :. I want to get off florinef because of the long term side effects, so I asked my cardio EP to switch me to a SSRI instead.So with my doctor's approval, I have weened myself down to !/2 a pill, now 1/4 pill a day and I'm so weak, pre-syncope, low blood pressure (70/45) and TIRED . Husband said just go back to the 1/2 dose florinef again, and today I feel energy almost like a normal person (ok maybe not That great, but close!). Also my cardio EP gave me an rx for Zoloft, which made me so nauseous. It has been a few months now and I don't feel any improvement. In fact, I cut that down to 1/4 of a pill and the nausea subsided, but I still feel so much worse. I'm afraid I'm going to have to go back to florinef exclusively, but the hidden side effects concern me. Quote Link to comment Share on other sites More sharing options...
Megan Posted April 17, 2008 Report Share Posted April 17, 2008 Here's my two cents on that...If I'm not healthy now, then I'm not enjoying life now and don't even want to think about the future. So as far as the hidden side effects, taking the florinef is what I have to do, so I do it, and just watch my health and watch for any weird signs. (difficult when pots is so weird anyway...) Anyway, my point is, if it's the only thing that helps you, it's probably worth it. Just a thought. Meg Quote Link to comment Share on other sites More sharing options...
Deb Posted April 17, 2008 Report Share Posted April 17, 2008 Since I'm now recovered from POTS, I can look at my symptoms, etc, a little more objectively than I could when I was feeling so bad. I can honestly say that if I hadn't been on the Florinef, I would not have been able to do anything. The side effects were way more desireable than the symptoms. My doctors tell me that it is extremely unlikely that I will have POTS again, but if I did, I would not hesitate to take the Florinef again.Like Meg said, if it's the only thing that works, then use it. Just try to eat as healthily as you can, and NEVER let yourself get dehydrated. Quote Link to comment Share on other sites More sharing options...
ellen Posted April 17, 2008 Report Share Posted April 17, 2008 Meg and Deb, you are so right. I have been miserable trying to "get better"! I just took an extra dose of florinef and feel so much more normal. Quote Link to comment Share on other sites More sharing options...
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