Re: talking to the doc...or trying to get in a word

March 1, 2012

I had an appointment with a Dr. today that I was referred to for

Hypogammaglobulinemia. He said that he worked with Dr. Conn at U of M. His

name is Dr. Penner. He is a Hematologist and internal medicine. I did

mention that I had been talking with a doc on this site but did not get to

mention Dr. Grim's name. He was great to talk with, spent over an hour with me

and agreed that my case is a bit difficult. He thinks that something systemic

is causing my immune system to go crazy. He also thinks that the sores that

keep coming in my mouth my be herpes that has come from the immune system

depression. He is gonna do more tests and see if he can pinpoint the problem.

I am so happy that he is taking this further. My PCP put me on Aldactone and I

am just waiting to get back into the endo.

Maybe this doctor will be able to help me with all of the symptoms.

Stacey

--- n hyperaldosteronism , Clarence Grim <lowerbp2@...> wrote:

>

> It seems many on our site here basically made the Dx themselves.

> Don't know how many made a false Dx and did not get here.

>

> CE Grim MD

> On Mar 1, 2012, at 1:09 PM, Bingham wrote:

>

> > Sadly NOTHING gaurantees you will be listened to except an imminent

> > lawsuit, but it can up your chances!

> >

> > No matter what many will not go over an entire list with you - so

> > just a caution - so prioritize the top 3 things as they will have

> > you discuss what is the most important. You may get " Okay, we can't

> > go over the entire list today, but is most important you want to

> > talk about? " IF they say it that nice!

> >

> > It would be great, but time is not endless for all the questions we

> > have, especially in an internet era where we keep finding more and

> > more questions to ask (plus they are typically busy typing today not

> > writing so good luck getting them to even raise their head up) - it

> > would be ideal and most wonderful, but there is a waiting room

> > behind you full of people who do not want to wait to see the doc,

> > just like you didn't like waiting.

> >

> > No one knows who Dr Conn is, or even Conn's Syndrome, and while some

> > may act like it, they often barely know what hyperaldosteronism is

> > (they will nod in the affirmative because they recognize the term

> > " aldosterone " in it, but I am telling you from experience 9/10 have

> > to look it up).

> >

> > Wrong, I know, but bringing it in and up needs to be done, but be

> > prepared for their mood to change when you talk about someone else's

> > work, or something you got off the internet by another doctor.

> >

> > We often go in thinking about sweet red wine and smelling

> > roses .....and then when trying to get answers we end up forgetting

> > those things can also be thorns and poison - so be prepared to stand

> > your ground or understand it may not be as smooth, regardless of the

> > steps you take.

> >

> > Recent research has shown that exploring the internet is more and

> > more common, but the patient's eyes and mind are naturally drawn to

> > the most dangerous and often rarest things - when common things are

> > much more common so you must be open minded at least when it doesn't

> > show or they won't check you for ragged red fiber disease......you

> > can look it up......wait...better not.

> >

> > Just words of caution. Until we find a way to fix it for good......

> >

> >>

> >> Ok this is a response from my Endo, when I emailed her regarding my

> >> BP and concerns that it remains high almost one month post op. I

> >> had asked about AVS and why I was not tested. I have my appointment

> >> tomorrow and looking for feedback and wondering how accurate her

> >> response is. I'm dealing with Kaiser here, and my experiences with

> >> them thus far have been negative to say the least.

> >> This was her response below. Any feedback would be much appreciated.

> >> Thanks!

> >>

> >> Ms. Abdallah,

> >> The main purpose of your appointment with me later this week is, in

> >> fact, to go over several of the issues/questions you raised in your

> >> email. We always repeat the aldosterone and renin levels after

> >> surgery to assess for surgical cure. As you've read, hypertension

> >> is improved after surgery for all patients with unilateral disease

> >> and is cured (meaning blood pressure medications are no longer

> >> required) in about 30-60% of patients. So, very often we are able

> >> to reduce the medications but not stop them all together. I think

> >> the significant improvement in your potassium levels is telling in

> >> and of itself that you've benefited from the surgery.

> >> The adrenal vein sampling tends to be used more in academic and

> >> tertiary care level medical centers. Even in these settings, the

> >> general guidelines developed by the experts in the field (a

> >> consensus report with guidelines was published just a few years

> >> ago) indicates that for a patient under the age of 40 with a well

> >> defined unilateral adrenal mass the vein sampling could be

> >> deferred. If the CT was unclear( meaning the adrenal gland(S) had a

> >> nodular or " lumpy " appearance or just appeared generous in size) or

> >> did not show a definite mass, then we would have had to pursue the

> >> vein sampling. It is a difficult procedure and it is recommended

> >> that it only be done by Radiologists with specific training for it

> >> (since it can lead to serious complications), so if we had had more

> >> indicators that it was needed, then we would have referred you to

> >> get it done at one of the other Kaiser facilities (Hayward does not

> >> have a designated Radiologist for this test). So, many patients in

> >> your situation do not undergo the AS.

> >> My plan was to order the aldosterone and renin test for you when

> >> you come in this week (it needs to be done in the morning, before

> >> AM). Since your appointment is only 2 days away, I don't think I'd

> >> have the results AT the appointment if you do them tomorrow, but

> >> I've placed the order for your anyway. You can wait and do them

> >> after I see if that's easier. I can try to answer any other

> >> questions you have at your appointment.

> >>

> >> >

> >> > > Question regarding avs testing. I had an adenoma on my left

> >> gland removed Feb 2nd. Potassium has since returned to normal range

> >> 5.0 actually. BP remains on the high side, around 160/105. I never

> >> was offered AVS test. Having severe bouts with anxiety,

> >> irritability, like PMS times 10, most of the time! My family is fed

> >> up, I'm frustrated! Is it posible I had bilateral aldosterone over

> >> production? I have endo appt. March 1st. I've requested aldo renin

> >> tests again. Anything else I should ask the Endo? Still taking hctz

> >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and

> >> Atenolol 50 mg.

> >> > > Thanks guys

> >> > >

> >> >

> >>

> >

>

March 2, 2012

Can always file a complaint with the state medical board. Doesn't cost you any

thing. Dr has to spent his time replying to board and may be fined or have there

license suspended.

> > > >> >

> > > >> > > Question regarding avs testing. I had an adenoma on my left

> > > >> gland removed Feb 2nd. Potassium has since returned to normal range

> > > >> 5.0 actually. BP remains on the high side, around 160/105. I never

> > > >> was offered AVS test. Having severe bouts with anxiety,

> > > >> irritability, like PMS times 10, most of the time! My family is fed

> > > >> up, I'm frustrated! Is it posible I had bilateral aldosterone over

> > > >> production? I have endo appt. March 1st. I've requested aldo renin

> > > >> tests again. Anything else I should ask the Endo? Still taking hctz

> > > >> 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and

> > > >> Atenolol 50 mg.

> > > >> > > Thanks guys

> > > >> > >

> > > >> >

> > > >>

> > > >

> > >

> >

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March 2, 2012

Just had 2 days worth but my pressure was lower at the doctor office yesterday

than it has since I stopped all BP meds. Getting my K checked in 3 weeks. I am

still taking the K supplement with Aldactone, is that ok? I know my K is still

low cause of the muscle pain when walking.