...I ended up in the hospital in March of 2011 for dehydration due to a lack of aldosterone and that was when we started the saline IVs. I had to have weekly electrolyte labs and if they came back below range for sodium then I had to go to the hospital infusion room for an IV that evening or the next day to bring my levels up.
Thou I do drink tons, I do at times show signs of dehydration (skin goes all like dehydrated in hands etc) due to all this low blood volume stuff and have also had low, out of normal range sodium level come up on one of my blood tests ... my result came back saying 135 (normal range 136-146) .
Doctors ignored the abnormal sodium level and didnt even tell me to increase my sodium nor even tell me it had come back abnormal, I seen that result (along with a severe hypoglycemia result which I also werent told about) years later when I requested copies of all my tests. (I think the doctor I have now is better then those I did have in the past but he just tells me to use a lot of salt).
For me.. I think its like you.. things may have to get so bad that I end up so severe that I end up in hospital in a bad way before anything more is done for me and even then.. they have a tendancy to blame other things for my POTS symptoms eg when I stuffed up my meds and overdosed, the tachycardia which was my POTS they blamed the overdose for and did put me on a drip on that occassion. My states biggest hospital emergency and the ward.. had no idea what POTS was an ignored me when I told them that was what was causing my tachycardia. ***sighs**
Ema.. you say that 0.1mg is the typical dose for most people. When you say that are you refering to those who just have POTS but who dont have an aldosterone deficiency? (I dont have a deficiency of that so its soley just being used for POTS).
I also have polycystic ovary syndrome (PCOS) which usually causes things like high aldosterone (but in my case my aldosterone isnt high with it and in normal range.. the hormones the PCOS changes in my case, have been affected by the ME so those PCOS abnormalities no longer show with the ME pulling my levels the other way eg my high testosterone is now low testosterone.
Maybe its cause of 75% of those with PCOS have high aldosterone that the specialist dont feel comfortable to put the florinef up further?
Tania, are you keeping track of your BP at home? Do you have any way to get regular electrolyte labs? I ordered Florinef on my own for cost reasons so I wonder if you could import it as well? But it would be crucial to get regular electrolyte labs before raising as Florinef wastes potassium and that can cause dangerous and awful symptoms as we all know
Yeah I do have a BP monitor at home.. issue is I have severe BP issues due to dysregulation of my autonomic system with it going both extremely high and low orthostatically (these issues too can be caused by low blood volume). Another thing I havent been able to get a doctor to listen to me about or test or research the issue and Ive been trying for 4-5 years to get a tilt table test ..not just then to have a paper of test result evidence of my POTS which I could show other doctors, but also so my severe BP issues are seen and paid attention too. Im esp concerned about the severe orthosatic hyPERtension
Crazily.. Sth Australias main hospital (Royal Adelaide Hospital) no longer does tilt table testing and got rid of their table and no one can tell me where a hospital is in this state which does do tilt table tests (maybe none of them do).
My latest specialist.. the one whos being semi helpful for the POTS is having me blood electrolytes tested after a few months to see what the Florinef dose he has me on is doing to me (I had abnormally low calicum results recently too but my last test was normal).
I just really dont feel comfortable raising my own dose of it against his advice esp it being a med which needs to be monitored.. from what he said he wants to check my electrolites after just a few months after first starting it, (so that test is coming up soon as Ive been on the Florinef now maybe 2mths already) and then from there said I should be fine from there if the blood test is okay (so I dont think he is planning to then test again my electrolites so i wont be getting further monitored with that).
**sighs**. maybe I should just start ignoring my POTS and go out more, so end up collapsed all over the place so others are ringing ambulances to have me taken to hospitall a lot.. maybe then I'd be more helped.
Right now I stop others ringing an ambulance when I collapse (if I can talk still, one has been called before when I was competely out of it) and have told my carer not to ring them even if Im unconcious for several minutes (longest ive een unconcious was appearently 5mins)... .. maybe I should just say to ring whenver I collapse (I hate thou how I get treated at the darn hospitals.. and they've sent me home having to be wheelchaired out to a car before!!! with no treatment done at all while there).
Then Im stuck in the city when kicked out of the hospital with often no way home which is 50kms away except a taxi (my carer wont drive in the city cause she's not a good driver and my boyfriend can only see me a couple of times a week). Ive been stranded after being ambulanced to hospital on several occassions.