my potassium level is edging upwards! :)

[Guest guest]

Dear Clair,

Yes, the Florinef is helping a great deal. In fact, my syncopal episodes

worsened during the lengthy sinus/upper respiratory infection, etc. I had for

nearly 2 months before Christmas. For the first time, I was actually having

syncope and falling HARD, face first, with no pre-syncope " warning " ....suffered

two minor concussions that warranted a 911 ambulance ride to the local hospital.

Spent the night in ICU once. For weeks, I was badly bruised on my scalp, head,

trunk, arms, and legs from falling so hard and so fast. I shudder to think what

would be happening without the Florinef. I take a relatively small dose (0.1

twice daily), and also take 50mg of Provigil (Dr. Grubb said it would have a

synergystic effect with my Florinef). I did speak with Dr. Heller this

morning. The blood draw that was done on Mon. (day before yesterday) showed that

my potassium level was up from 2.9 to 3.3, which is good. I know that is still

below the low end of normal, but I did make him aware that I had emailed back

and forth with you, and that I am perfectly willing for him to order an IV

infusion if necessary. I also advised my Dallas cardio (Dr. Lee Ann Pearse at

Medical City, Dallas) of this same information. I see Dr. Grubb next Tues, and

will further discuss it with him. In the meantime, I will continue to eat

several bananas and take my Rx liquid 1 1/2 tsp. of potassium supplement w/

magnesium oxide pill twice daily. That seems to be helping, slowly but surely.

I have noticed that since last Sat, my tachycardia and feeling generally weak

and shaky are not so debilitating as far as me being up and around inside my

home and running short/necessary errands (including dr. visits). I thank you so

much for taking the time to advise me on this, as I do realize the serious

nature of the issue. I do very much look forward to seeing you again when we

come in June.

Sincerely,

~LoneStarRose~

(~~)

Dear ,

Yes, we should be able to schedule an appointment during your trip to

Baltimore in June. Is the Florinef helping substantially with the POTS? I

wonder if the benefit you are getting from the medication is worth this serious

side effect.

Please keep me posted.

Thanks,

Clair

Dear Clair,

Yes, Dr. Heller did also measure my potassium w/a 24 hr. urine collection as

well as serum electrolyte blood work. It is because I take Florinef for my

POTS. It does that, and has to be monitored. I had been taking over the

counter potassium supplements, as well as magnesium oxide twice daily, but it

wasn't enough. I haven't heard from Dr. Heller since my 3rd blood draw

yesterday. I will ask him (and had already silently planned to) about IV if my

potassium is still too low. Very concerned. Having tachycardia and feel week

and dizzy and always thirsty (though drinking lots of Gatorade). I expect Dr.

Heller will get back to me tomorrow. If not, I'll go ahead and call his office.

Thank you so much for asking about me. Dr. 's office (at JHH) has

rescheduled my appt. to the first week of June (the 3rd, I think?). Can the

boys and I see you during that same trip?

~LoneStarRose~

(~~)

Dear ,

The quickest way to get your potassium up is with an intravenous infusion,

but that will have to be done with great care. Do the doctors have any idea why

your potassium level is so low? Have they measured the potassium output in your

24 hour urine collection?

I am very puzzled by this, and I share Dr. Heller's concern. Please let

me know how things go today. You are in my prayers.

Thank you for keeping me informed.

Clair