Re: New to the group - Kim

[Guest guest]

I would try to get to see Dr. Atlas ASAP. Tell him Dr. Grim is referring you. Look at the Am Soc of HTN list of specialists and see if one is at Stonybrook. I will look when I have time.My approach has been to use spiro first.On Jan 4, 2010, at 10:40 AM, woodconstrux wrote:Hi all,My wife was diagnosed about 5 years ago. After about a year of mis-diagnosis and a change of GP, we found an endo who figured it out right off the bat. However, a few months later he left the practice and things stopped happening. After 5 years she is still on spiro, an AVS was never done, and although her BP is fine, there are other possibly related symptoms that are becoming a real problem. (sweating, fatigue, A-fib, weight gain). We were given the impression that unless an obvious tumor was found on the MRI, Spiro was the best option. (Her left adrinal was marked "abnormal" but that's as far as they got. After reading through this group, it's obvious that we should not have stopped at Spiro and should have aggressively pushed for more testing and a better solution. I'm starting fresh on finding a new MD.Right now, our biggest problem seems to be finding a doctor who knows more about this than I do. Everyone we speak to is either clueless or working from really old information.We are located on Long Island, about 10 minutes from Stony Brook Hosiptal and about 2 hours outside of NYC. There is a considerable number of good hospitals locally, but no one can tell us which is the one to go to for PA. The closest thing I've found is the "Adrenal Center" at Columbia but We are open to suggestions.Any thoughts?ThanksTom & Kim

[Guest guest]

Hi Kim and Tom -!One of the things that helped me immensely was a change in the foods I ate. In the files section of this forum there are various files which can help as well. The diet recommended for Conn's is DASH. http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdfI was a skeptic, but unbelievably adding dashing into the mix, I've done a huge turn around. You'll see plenty of messages here about that as well.I'm sure that others will help with the info required about continued treatment, but if Kim isn't DASHing, then give it a go. It's basically potassium rich foods, and sodium reduction or

elimination. Cheers SueFrom: woodconstrux <construx@...>hyperaldosteronism Sent: Tue, 5 January, 2010 5:40:24 AMSubject: New to the group - Kim

Hi all,

My wife was diagnosed about 5 years ago. After about a year of mis-diagnosis and a change of GP, we found an endo who figured it out right off the bat. However, a few months later he left the practice and things stopped happening. After 5 years she is still on spiro, an AVS was never done, and although her BP is fine, there are other possibly related symptoms that are becoming a real problem. (sweating, fatigue, A-fib, weight gain).

We were given the impression that unless an obvious tumor was found on the MRI, Spiro was the best option. (Her left adrinal was marked "abnormal" but that's as far as they got. After reading through this group, it's obvious that we should not have stopped at Spiro and should have aggressively pushed for more testing and a better solution. I'm starting fresh on finding a new MD.

Right now, our biggest problem seems to be finding a doctor who knows more about this than I do. Everyone we speak to is either clueless or working from really old information.

We are located on Long Island, about 10 minutes from Stony Brook Hosiptal and about 2 hours outside of NYC. There is a considerable number of good hospitals locally, but no one can tell us which is the one to go to for PA.

The closest thing I've found is the "Adrenal Center" at Columbia but We are open to suggestions.

Any thoughts?

Thanks

Tom & Kim

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[Guest guest]

We had not gotten any info about diet until I found this group. I ordered the

DASH book and it came this morning. We started on a sodium restricted diet a few

days back (i do most of the cooking, so we are both eating that way) and she

aready seems to be feeling more energetic. It's too early for definite results

but it seems to be helping.

Tom and Kim

[Guest guest]

Most of the BP effect has Maxed by 2 weeks so tell your Dr u may need to reduce meds. Be sure u are doing the low Na version 1500 mg a. Day or less read EVERY label. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Jan 4, 2010, at 1:32 PM, woodconstrux <construx@...> wrote:

We had not gotten any info about diet until I found this group. I ordered the DASH book and it came this morning. We started on a sodium restricted diet a few days back (i do most of the cooking, so we are both eating that way) and she aready seems to be feeling more energetic. It's too early for definite results but it seems to be helping.

Tom and Kim