bombsh3ll Posted December 28, 2017 Report Share Posted December 28, 2017 Hi I have been taking licorice root capsules 2x450mg daily for two and a half years. They worked wonders at first but lost effectiveness at about 1 year. I produce next to no renin or aldosterone, and after I have a blood volume test in January I plan to transition to florinef Has anyone else moved from licorice root to florinef? If you initially responded well to licorice root, did the florinef also help, and does florinef also soon lose its effectiveness after a while or does it keep working in the long term? Also what dose of licorice root did you move from and to what dose of florinef? Did you transition gradually or just change straight away? I would be really interested to hear anyone's experiences who has gone from one to the other. B x Quote Link to comment Share on other sites More sharing options...
GardenGal Posted December 30, 2017 Report Share Posted December 30, 2017 Hi bombshell. How you doing? We'll I haven't done licorice/florinef, but am doing a similar thing with licorice and desmopressin. Lots of issues with fluid volume, mine may be more vasopressin rather than renin driven however (not sure). I imagine you have times when your urine volumes are really high? Can I ask how/if this effects muscle weakness or cramping for you? I've cut my desmopressin down to about a third of my normal dose... and am struggling with theses. Not sure if they're related or not. thoughts? Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted December 30, 2017 Author Report Share Posted December 30, 2017 Hi I have also tried desmopressin (alongside the licorice), which stopped me having to pee during the night but sadly didn't help me stand any. When I started the licorice root, the effects were quick and dramatic, but waned over time. I definitely believe reduced blood volume and inability to hold fluids is my issue. I did a urine collection to exclude a pheochromocytoma, and one 24 hour container which holds a max of 5 litres wasn't enough. This led to the discovery that I pee around 6 litres per day - upper limit of normal being 3 litres. I had a hypertonic saline test for diabetes insipidus which I have to repeat as it was inconclusive - not fun! I actually hope I am not diagnosed with DI because I already know the treatment for that which is desmopressin doesn't help my POTS, and want to pursue the fludrocortisone avenue as my renin and aldosterone are barely detectable. I don't really get muscle weakness (other than being generally deconditioned secondary to POTS) or cramping so can't answer that. Are you diagnosed with DI or did you just try the desmopressin to see if it helped - and does it help OI for you? Quote Link to comment Share on other sites More sharing options...
GardenGal Posted December 31, 2017 Report Share Posted December 31, 2017 I realised my fluid volume was crazy when I did a couple 24 hour urine collections also and was peeing like 8 litres in 24 hours. That was several years ago, and i think it's improved some....But my Cardio started me on the desmopressin for the OI. It does help the winded/tachy stuff for me, and over all has helped a lot with the feeling of being nutritionally depleted. I did the fluid challenge test for DI and my numbers were right along the boarder for central DI, though my vasopressin was undetectable (I hear that can be 'normal' however)..... I don't remember having renin aldosterone levels done, so that's an angle that I should probably consider. Thanks for that. I'd be interested to hear how you do with the fludrocortisone. I've avoided it because of the immune component, but perhaps should reconsider if it does turn out the headaches are from the desmopressin :-(. What other autonomic symptoms do you have? Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted December 31, 2017 Author Report Share Posted December 31, 2017 I have POTS with severe orthostatic intolerance and presyncope/lightheadedness all the time. I can only stand for a couple of minutes, this improves in the late evening after I have been drinking water and salt all day. I can also be sitting with perfectly normal BP and pulse but feel awful. The amount of urine I pass in 24 hours, and the fact that licorice root helped me so much initially, plus I feel best at the end of the day when my blood volume must be highest, all point me towards thinking my problem is chronic hypovolaemia. My symptoms are basically those of stage 1 or 2 hypovolaemic shock. I also lost 6kg in the first few weeks I became ill, which had to be fluid weight. I don't have any other autonomic symptoms other than those causing poor cerebral perfusion. I've always taken medication for acid reflux and constipation all my adult life, which hasn't changed. It may in theory be possible to take both fludrocortisone and desmopressin with careful monitoring. Do you have regular blood tests for electrolytes? Quote Link to comment Share on other sites More sharing options...
GardenGal Posted January 5, 2018 Report Share Posted January 5, 2018 When my sodium feels wonky I call my doc for labs. When things get real sketchy I do home infusion, atlas then I know the volume I'm getting is Isotonic. That's been a life saver!!! So thankful for the infusions. Have you wondered if you reflux and constipation stuff is autonomically driven? Were you having some more testing this month? I feel like I remember that from another post? best of luck! PS: I'm trying a combo of licorice and the desmopressin at lower doses now. When I was doing both I had a lot of frontal head pressure, blurred vision, etc. So... we'll see... Quote Link to comment Share on other sites More sharing options...
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