Re: K is 4.5 now and UCLA is not cheap!

[Guest guest]

Considering I was undiagnosed for probably 13 years, and then diagnosed but

untreated (except with K supplements and sodium restriction) for another 10

months, my thinking is it would be worth it to change to PPO - IF you know the

provider you will be switching to knows what they are doing when it comes to PA

(I'm pretty confident that if you changed to my primary care doc, you'd be in

good hands!). It just doesn't sound like you are in very skilled hands right

now, and if I were in your position, I would back away from surgery until I knew

I was having it done by someone who knows their stuff.

I'd be skeptical of that 4.5 K level - there's been a lot of talk on this forum

about phlebotomists who do not draw K correctly. During the year that my K was

monitored weekly, I only met *one* who knew how to do it right.

>

> Hi All,

>

> Mammo and ultrasound came back fine. Doctor read both on the spot and said

ultrasound showed swollen glands indicative of someone fighting infection.

Given my blood work from hospital when I went in and got K drip, that seems

plausible. PCP checked my blood K levels since I'm in between nephrologists.

When I left hospital on 7/22/12 levels were at 3.4. My Inspra was doubled to

50mg while there and for the week following. I felt wretched (faint,

light-headed upon standing) and went back down to 25mg on my own as of 7/27/12.

As of yesterday K levels were at 4.5. That's unheard of for me. Can K levels

fluctuate that wildly?

>

> Talked with UCLA Endocrine Surgery Center. My HMO won't cover surgery there,

so the discounted rate for " everything " is $57,000. Um, yeah. I'm a single

parent! So, not sure how I'm going to pull this one off. Bake Sale?! I can

switch to a PPO during open enrollment, but it won't be effective until January

of 2013. Is it possible to keep things stable until some unknown time next

year? Have other people done this with similar high aldosterone/fluctuating K

levels?

>

> M

>

[Guest guest]

Great news re. the mamo .

I see no problem delaying surgery, many delay months or even a lifetime! In fact, NIH has recommed I treat w/eplerenone even with known tumor, producing both aldosterone & cortisol. (I'm still tryng to get an answer s to why.)

I agree with msmith the jump in K seems suspect, that is quite a change w/o major intervention.

>> Hi All,> > Mammo and ultrasound came back fine. Doctor read both on the spot and said ultrasound showed swollen glands indicative of someone fighting infection. Given my blood work from hospital when I went in and got K drip, that seems plausible. PCP checked my blood K levels since I'm in between nephrologists. When I left hospital on 7/22/12 levels were at 3.4. My Inspra was doubled to 50mg while there and for the week following. I felt wretched (faint, light-headed upon standing) and went back down to 25mg on my own as of 7/27/12. As of yesterday K levels were at 4.5. That's unheard of for me. Can K levels fluctuate that wildly? > > Talked with UCLA Endocrine Surgery Center. My HMO won't cover surgery there, so the discounted rate for "everything" is $57,000. Um, yeah. I'm a single parent! So, not sure how I'm going to pull this one off. Bake Sale?! I can switch to a PPO during open enrollment, but it won't be effective until January of 2013. Is it possible to keep things stable until some unknown time next year? Have other people done this with similar high aldosterone/fluctuating K levels? > > M>

[Guest guest]

I actually encourage this. But if they repeal Obama care you will not be able to enroll due to this prior Dx is my bet.I would actually recommend a trial of meds and DASH first and sounds like you are making progress.CE Grim MD

Clarence Grim MDlowerbp2@...

On Aug 3, 2012, at 11:57 AM, Monika wrote:

Hi All,

Mammo and ultrasound came back fine. Doctor read both on the spot and said ultrasound showed swollen glands indicative of someone fighting infection. Given my blood work from hospital when I went in and got K drip, that seems plausible. PCP checked my blood K levels since I'm in between nephrologists. When I left hospital on 7/22/12 levels were at 3.4. My Inspra was doubled to 50mg while there and for the week following. I felt wretched (faint, light-headed upon standing) and went back down to 25mg on my own as of 7/27/12. As of yesterday K levels were at 4.5. That's unheard of for me. Can K levels fluctuate that wildly?

Talked with UCLA Endocrine Surgery Center. My HMO won't cover surgery there, so the discounted rate for "everything" is $57,000. Um, yeah. I'm a single parent! So, not sure how I'm going to pull this one off. Bake Sale?! I can switch to a PPO during open enrollment, but it won't be effective until January of 2013. Is it possible to keep things stable until some unknown time next year? Have other people done this with similar high aldosterone/fluctuating K levels?

M

[Guest guest]

So are glands swollen all over your body of just the arm pit?

Clarence Grim MD

On Aug 3, 2012, at 11:57 AM, Monika wrote:

Hi All,

Mammo and ultrasound came back fine. Doctor read both on the spot and said ultrasound showed swollen glands indicative of someone fighting infection. Given my blood work from hospital when I went in and got K drip, that seems plausible. PCP checked my blood K levels since I'm in between nephrologists. When I left hospital on 7/22/12 levels were at 3.4. My Inspra was doubled to 50mg while there and for the week following. I felt wretched (faint, light-headed upon standing) and went back down to 25mg on my own as of 7/27/12. As of yesterday K levels were at 4.5. That's unheard of for me. Can K levels fluctuate that wildly?

Talked with UCLA Endocrine Surgery Center. My HMO won't cover surgery there, so the discounted rate for "everything" is $57,000. Um, yeah. I'm a single parent! So, not sure how I'm going to pull this one off. Bake Sale?! I can switch to a PPO during open enrollment, but it won't be effective until January of 2013. Is it possible to keep things stable until some unknown time next year? Have other people done this with similar high aldosterone/fluctuating K levels?

M

[Guest guest]

About meds and K:Right now I'm on Inspra 25mg, and DASHing. I get really ill on K supplements. Symptoms of extreme dizziness, disequilibrium (like falling off chairs, room spinning, not able to stand up, etc), and severe diarrhea, nausea). So, have to get K through food. When I was on the K drip in the hospital, it made me hot and left me with a strong metallic taste in my mouth, and a strange feeling in my head--very similar to a pre-seizure aura--both the metallic taste and the "not quite right" feeling in my head.Swollen glands only on right side--the side of the AVS (yes, yes I know--they only took a sample from the right side!). So, swollen in groin and armpit on right side. Pain extends down my arm on right side to about my elbow. Infact pain is acute enough--that it gives me pause

to lift my arm above my head or life my son up and hold him (he's about 35 lbs). K blood levels were taken from an electrolyte panel, not a renin blood panel like the nephrologist has done in the past. Would that change things any?I'd prefer to wait on doing surgery until I can switch to a PPO. But with one hospital stay already, I can't afford the unpredictability of my health causing havoc w/ my ability to teach or take care of my children. So, I feel like I'm in a bit of a quandary about how to proceed. HMO says they will allow me to go out of network if my PCP or a specialist deems it necessary. M

[Guest guest]

If Monika is in a group plan or a small business plan, she will be able to change insurance during her company's open enrollment period. It has been that way for many, many years; and will be again despite Obamacare's eventual demise. Many states have high-risk pools, the premiums for which are not out-of-line. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Grim Clarence I actually encourage this. But if they repeal Obama care you will not be able to enroll due to this prior Dx is my bet.I would actually recommend a trial of meds and DASH first and sounds like you are making progress. On Aug 3, 2012, at 11:57 AM, Monika wrote:Talked with UCLA Endocrine Surgery Center. My HMO won't cover surgery there, so the discounted rate for " everything " is $57,000. Um, yeah. I'm a single parent! So, not sure how I'm going to pull this one off. Bake Sale?! I can switch to a PPO during open enrollment, but it won't be effective until January of 2013. Is it possible to keep things stable until some unknown time next year? Have other people done this with similar high aldosterone/fluctuating K levels? M

[Guest guest]

And if she owns the business she can deduct a large amt of medical expenses for her and spouse. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Aug 4, 2012, at 14:39, Valarie <val@...> wrote:

If Monika is in a group plan or a small business plan, she will be able to change insurance during her company's open enrollment period. It has been that way for many, many years; and will be again despite Obamacare's eventual demise. Many states have high-risk pools, the premiums for which are not out-of-line. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Grim Clarence I actually encourage this. But if they repeal Obama care you will not be able to enroll due to this prior Dx is my bet.I would actually recommend a trial of meds and DASH first and sounds like you are making progress. On Aug 3, 2012, at 11:57 AM, Monika wrote:Talked with UCLA Endocrine Surgery Center. My HMO won't cover surgery there, so the discounted rate for "everything" is $57,000. Um, yeah. I'm a single parent! So, not sure how I'm going to pull this one off. Bake Sale?! I can switch to a PPO during open enrollment, but it won't be effective until January of 2013. Is it possible to keep things stable until some unknown time next year? Have other people done this with

similar high aldosterone/fluctuating K levels? M

[Guest guest]

You can't lways necessarily 'change" insurance during open enrollment, just what plan under the same insurance you want. If you decide to and can afford to pay higher copay and deductibles - you get to choose from a bigger list of docs,; pay less per month and lower co-pays than you have less choice, but the insurance company doesn't change.

Only congress gets the choice of about 12 different insurance carriers and about 20 different plans within their systems and they do not have to pay a penny into it. Ironic isn't it?

-- On Sat, 8/4/12, Clarence Grim <lowerbp2@...> wrote:

From: Clarence Grim <lowerbp2@...>Subject: Re: K is 4.5 now and UCLA is not cheap!"hyperaldosteronism " <hyperaldosteronism >Date: Saturday, August 4, 2012, 5:58 PM

And if she owns the business she can deduct a large amt of medical expenses for her and spouse.

May your pressure be low!

CE Grim MS, MD

Specializing in Difficult

Hypertension

On Aug 4, 2012, at 14:39, Valarie <val@...> wrote:

If Monika is in a group plan or a small business plan, she will be able to change insurance during her company's open enrollment period. It has been that way for many, many years; and will be again despite Obamacare's eventual demise. Many states have high-risk pools, the premiums for which are not out-of-line.

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Grim Clarence

I actually encourage this. But if they repeal Obama care you will not be able to enroll due to this prior Dx is my bet.

I would actually recommend a trial of meds and DASH first and sounds like you are making progress.

On Aug 3, 2012, at 11:57 AM, Monika wrote:

Talked with UCLA Endocrine Surgery Center. My HMO won't cover surgery there, so the discounted rate for "everything" is $57,000. Um, yeah. I'm a single parent! So, not sure how I'm going to pull this one off. Bake Sale?! I can switch to a PPO during open enrollment, but it won't be effective until January of 2013. Is it possible to keep things stable until some unknown time next year? Have other people done this with similar high aldosterone/fluctuating K levels? M