Have you been tested for Hashimoto's and thyroid issues? My cardio was certain I had POTS.. and then it turned out to be secondary hypothyroid, adrenal insufficiency, and Hashimoto's thyroiditis. My blasted antibodies are 1695 or more now and have decided that attaking the thyroid alone was boring so let us hit everything else as well.
If you haven't been tested for the thyroid AI's do it. I was put on pindolol.. which is a short acting beta-blocker. I only needed it during the day when I was moving about.. when I slept it needed to be out of my system. Any of the others made my headaches and migraines worse. I finally got treatment for my thyroid in January and treatment and identification of the adrenal issues yesterday. Once my thyroid meds started.. my POTS symptoms went away. If that wasn't an I told you so to my Endo, I do not know what is.
I am not sure if this helps, but you have to be thorough when they toss out the autonomic card.
Florinef? I will look into the FDA database for side effects.. Fludrocortisone or florinef is a corticosteroid. It belongs to the family of medicines called steroids. Your body naturally produces similar corticosteroids, which are necessary to maintain the balance of certain minerals and water for good health. I could see your MD prescribing this if you have low cortisol.. but for tachycardia by autonomic trigger. Did your MD to a blood and 24 saliva cortisol test on you? If not he may be driving you hypothyroid with the steriod.
Headache is a rare side effect of system interaction. If these headaches continue, you need blood testing to make sure your cortisol hasn't been driven too high. Cushing's syndrome and adrenal fatigue are linked to high cortisol.
First of all, sorry to hear about all your problems.
Second, did you taper UP on the florinef? It is not a fun medication to take - for a tiny little pill, it packs a wallop. I suggust you cut the pills into quarters and start with a quarter for a week, then when you finish up a few pills, then move to halves, then move up to a whole pill.
I took the pill for Cushing's and now take it for Addison's - and I had to taper into it. It can cause headaches but if you taper into it, you will have less side effects and more benefits. My endo also suggests salt tablets with it but not sure that will be the same in your case. I take 1 gram sodium chloride tablets to keep my blood pressure up and sometimes just use those when my BP gets wonky.
It takes a while to get used to... also, it may take more than one pill - but back off, taper up, and then see how you do!
Good luck!
Oh my...Yikes!
If you are taking 2, take them one at night and one in the morning to even things out instead of taking them together as well. I have taken up to 3. I got the "florinef fluffies" and gained 10 pounds too which ticked me off to no end.
If they are checking your renin and aldosterone - make sure they do the testing accurately. Some labs require you to stand at least 30 minutes before the draw, and the tube must be lavender, on ice, spun immediately and frozen promptly or the results are invalid. They mess up my renin all the time so I even bring my ice to be lab and feel like an idiot standing in the waiting room but I want my results to be the best they can be.
What thyroid tests did they do? If it was just TSH, T4 and T3, not enough - you need free T3 and free T4 plus antibodies for hashimotos and graves. Docs just run the panal and the panel, well, bites.
Ask about the salt.
Well I am going to have to do some research because I am quite sure that I have had some of thyroid tests done including the t3 t4 stuff. But I will check. As for the POTS I have sort of odd symptoms. I had a tilt that was negative because at the time i was having high blood pressure when I got tachycardic when standing. However recently I have had documented many times of lowering of blood pressure and higher heart rate with position change. I have complex heart issues. They have done multiple EP studys and what now makes my doctor want to treat me for autonomic dysfunction was that he couldnt find the area that was producing such bad tachycardia. So he is now going to treat me for both atrial tachycardia as well as autonomic dysfunction because he thinks I have both. I have terrible tachycardia. I am a bit nervous with them messing around trying to get this "higher filling pressure" to my heart because I have a history of high blood pressure and it took a year and a half to get it to come down. I called them this morning because my blood pressure was 148/100 last night and has been that high all weekend. How long does it take for your body to adjust to this florinef? Thanks for the help.
well it was sure nice of them to taper me, NOTTTTTTT. I called the doctor yesterday morning because my blood pressure was so high, instead of lowering the dose the nurse just wanted me to increase my heart med that lowers my blood pressure. I know that if she would have checked with the doctor he would have told her differently, but I didnt make a stink about it. But then last night I ended up calling the on call doctor because i was having such bad headache, high blood pressure and started having chest pain. Finally he told me to decrease the florinef to 0.1 twice a day. Still had the headache today but the blood pressure is a little better. We'll see I guess on thursday when I actually see them. Sure would be nice to lose the headache though. Thanks for the advice.
So does florinef make you lose potassium??? That is definetly not a problem I can have. When I get a potassium much less than 4 I have increased heart problems. SIGHHHHHHHH
How much florinef do you take? I started out taking 0.1mg florinef once daily know I take .25 tablet daily. Does your Dr. specialize in Addison's disease?
If your potassium is high, that is a sign of an adrenal crisis. K goes high, Na goes low... some addies go low on both (I happen to be one of them) so it is not a hard and fast rule but that is the norm. So you probably need to avoid potassium and push the sodium harder - but the florinef will help you hold on to both as it helps you hold minerals in general. K being low or high makes the heart go wild. Sorry - ingore the potassium advice... but any salt tablets you get have to be non-buffered as they buffer them with potassium.
Lucky to only take .25, Unhitched... do you take salt tablets?
Ok so went to the doctor today and yes they dropped my florinef again, this time to just 0.1 once a day. They would like to add salt to me but because I have really bad stomach problems I cant take the salt tablets. Im ok with the potassium because high is good for me. However he didnt want to do any testing of the adrenals yet unless I dont get any better. I'll give him that. So we'll see. Unhitched.. you got to read back in my post, I am not taking Florinef for adrenal problems (ie addisons).
Take the salt tablets with food! I take them all the time, food or no food and they do not bother me at all as long as there is some water. Not sure why they would bother a tummy... after all sodium is a main ingrediant in sodium bicarbonates and other things used to settle the stomach. All those fizzy things. Also many regular sodas are high is sodium so I know a lot of people who will drink those when they need the salt. Weird, huh.
Glad they dropped the florinef - that will help the headaches.
So things are a little better with lower dose of florinef. Blood pressure is defintely down, almost too much and still have a slight headache on and off. Is it worth trying to split it so i take 0.5 in am and pm as opposed to just once a day???
Hey rumpled, I just wanted to give you an update. I had a horrible reaction to florinef. According to my cardiologist only 5 in 100,000 get it. Too much fluid accumulated in my brain causing bleeds in my eyes even. I had horrible headaches. I had to undergo several spinal taps to relieve pressure to save my eyesight. Of course off the florinef. We switched to midodrine. Was pretty scary. Life changing experience that is for sure as I sit here trying to type barely able to see the screen. Just wanted to let you know what happened. No more florinef for me!!!
I am so sorry that you are going through all this. I am having a hard time right now with florinef as well. I take it for secondary addisons.
I am trying to taper off, and I am having an elevated pulse rate when standing.
I will keep you in my prayers. I hope things get better.
KM
That is AWFUL!
I am so sorry that you had to undergo all that. I had to increase my florinef as my renin keeps staying up around 16 and it is making me gain weight which is ticking me off but that pales in comparison to what happened to you!
It is a very powerful drug for a little thing... I always try to increase my salt first before taking more of it.
I hope you feel better soon!
