Glad to see that his potassium level is good :-)
Something less to worry about.
hi LA
i just had my BMP done and had a little low potasium, i am on florinef
i do not rememebr them doing one prior to that, but have had the panel done for other medicines. right now i don't take suppliment and hopes my diet will do the trick
i hope your son if feeeling better today, and good luck on folllow up they can figure some of this out for you ,, amo
Just a follow up on this subject: Nick's metabolic panel came back "normal." His potassium rate was right in the middle of the normal range (I can't remember the number as I'm typing this). So we will continue on as we have. We discontinued the nortriptyline in case that was the culprit. I don't know if it was or not. Maybe that plus the Florinef?
His bp has been in the normal-high range for the most part when he's not standing. He's had a few episodes of very high bp which last a few minutes at most.
His headaches have not returned to the level they were at before he started on the nortriptyline so for now we'll stay off it.
Cardiologist next week and hopefully some good follow-on tests afterwards.
thanks, all, for your advice.
Electrolyte imbalances such as hypokalemia, (lowered potassium), are actually quite common in patients with Dysautonomia. Even those that aren't taking medication known to alter potassium levels such as Florinef. Many specialists check their patients potassium levels both prior to Florinef, as well as one to three months after.
If his potassium level is low, his doctor maybe able to prescribe a daily potassium supplement to take with Florinef. Several members of our community have taken prescription potassium, including myself.
Florinef:
http://www.medhelp.org/drugs/Florinef-Acetate/show/5390
Hypokalemia:
http://www.medhelp.org/medical-information/show/679#sec_11284
thank you! We actually just returned from having his blood drawn at the lab. I just called the pc and requested a test. I think what they ordered was called a "basic metabolic" test. So we'll get the results next week.
In the meantime, I will just make sure his diet includes lots of potassium-rich foods. Baked potatoes for dinner! and we'll definitely hold off on the supplements. Thanks for the advice.
Hello,
Florinef has indeed the potential to deplete potassium levels, so you are right to increase his intake of potassium rich food.
But before buying a supplement you should request a blood test first, as too much potassium can be toxic, in particular when dietary intake of potassium suddenly increases.
Also potassium, in any form, can be quite unpalatable, and cause gastric distress (if you do buy some, purchase the extended-release tablet; like Slow-K. There is a wax matrix that carries the crystals),
so no need for your son to go through that if his potassium level is ok.
If you PC does not know what to do, maybe you should tell him that your son needs blood check for his potassium level on a regular basis.
The first test will tell you how he has been doing on it for the past month.
If the result is w/in normal limits, it's great, and means that his potassium/fluid intake is spot on. Just continue and ask for monthly tests.
If it is too low, maybe weekly tests would be appropriate for a while, until you can figure out the perfect balance food/fluid wise, and then go from there, to ultimately monthy tests.
It is hard to be on your own; I can relate to your plight. I wish Drs would return phone calls, and be more willing to help, even if they feel out of their depth, instead of ignoring us.
Good luck and keep us posted on the results.
interesting. Maybe I'll just give the doc a call and have her give us a lab referral. Couldn't hurt to get it checked, and we'll be out picking up his new sunglasses anyway.
I really hope the new issues ARE potassium-related. Much easier to fix. :)
How's cody doing today?
After my son was on the Fludrocortisone for 30 days and again at 90 they sent us for a blood test to check his potassium levels to make sure they were still okay. I would definitely ask for a blood test. Cody's levels were fine at those tests.