POTS and florinef.. could use some help

[sam78]

Hello. I am dont frequent this board very often but I have found more about POTS on this board then I have the heart board. I just spent two weeks in the hospital with heart problems and came out with a new diagnosis. I have atrial tachycardia as well as autonomic dysfunction. I was told to wear compression stockings and they started me on florinef. i have only been on it for a few days but I have developed a horrible headache on it. I was told this a common side effect of it. My blood pressure hasnt increased at all yet. Anyone had experience with florinef or have any ideas for treating the headache?? Would appreciate any support. Thank you

[mkgbrook]

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.

I hope this helps.
MG

[rumpled]

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!

[sam78]

UGHHHHH taper up, YEAH RIGHT!!. I got started on it in the hospital at 0.1, was on it for a day and a half and they increased it to 0.2. They are just smacking it to me. My standing blood pressure in the hospital was 76/44. The physician took it himself twice. Of course at the same time he grabbed me expecting me to pass out. I was shocked. I have horrible horrible heart arrhythmias and have had every system in my body check thoroughly except for the endocrine system. I have had numerous thyroid tests that always are normal. I think that I am going to request to go to a endocrine doctor and have them do some testing as well. Thanks for the advice. Of note today my blood pressure is a bit on the high side so I will give it till monday and call that fine heart doctor of mine. Thanks again.

[rumpled]

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.