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So triathlete stands for T3 ;-)May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 4, 2012, at 23:00, Valarie <val@...> wrote:

I think that generally, a constant TSH in the face of hypothyroidism, is indicative of a malfunctioning pituitary. TSH, after all, doesn't measure actual thyroid hormone; it measures a pituitary hormone. I don't know what gives with my daughter-in-law's constant TSH along with hypothyroidism, but on a T4/T3 preparation, she's gone on to be a sponsored triathlete; last year representing Team USA in the world finals. There was a time she was on the couch every day. She is also Celiac but I don't know how that figures in. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim So does she have central hypothyroidism?On Mar 4, 2012, at 21:53, Valarie <val@...> wrote:TSH is accurate for me, but not for many. They need FREE T3 and FREE T4 to properly assess. My daughter-in-law is one whose TSH is always 2.3 even as her T4 and T3 were below the normal levels. From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StaceyFI have hypothyroid and had my dose adjusted months ago. Last labs were good with Tsh 1.7. So it is not that. Last year at this time in the cold spring I was dripping in sweat in 40 degree weather. I think it was one of the meds I was on though.>> Cold all the time. Under tons of blankets with feet and hands cold . Have> you been properly tested for hypothyroidism? That would be FREE T3, FREE T4> and TSH.

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Nasty stuff. These needed antibiotics can ding the kidneys. Trust creatinine has been stable thru this. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 5, 2012, at 11:32, maggiekat7 <ljurkovic@...> wrote:

blood, sinus and skin cultures after elevatated WBC and fever and swollen lymph glands along spine/neck. Staph aureus. Cleocin, gentimycin. Now clear.

> > > >

> > > > Cold all the time. Under tons of blankets with feet and hands cold. Have

> > > > you been properly tested for hypothyroidism? That would be FREE T3, FREE T4

> > > > and TSH.

> > > >

> > > > Val

> > > >

> > > > From: hyperaldosteronism

> > > > [mailto:hyperaldosteronism ] On Behalf Of StaceyF

> > > >

> > > > No vomit, diarrhea, or excess sweat. Ism cold all the time now. Under tons

> > > > of blankets and my feet and hands are cold. Was not on diuretics at the time

> > > > either. My serum K was 3.5. I am having trouble keeping K up even with diet

> > > > and pill form. It's never gone past 3.8. Just started aldactone so I hope it

> > > > brings it up. My aldactone dose before was only 25 mg and it did not really

> > > > increase K to much. Now on 100 mg.

> > > >

> > >

> >

> >

>

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I passed out after my AVS due to low K. My K kept getting lower before my Adx,

even though I took 175 MEQ of K. It is normal now.

Lucy Sage

Please forgive brevity & typos

Sent from my droid

maggiekat7 <ljurkovic@...> wrote:

>Don't know about that...no more blood tests of late other than the cultures,

but I passed out cold...put that into the mix. Had just finished the

antibiotics (21 days, 1600mg cleocin/day). Got a headache while asleep, got up

to go get water or possibly tylenol, and passed out cold on a hardwood floor.

Ouch! That have anything to do with creatnine or aldo and infections and

antibiotics? Can't find anything on the web on this, just curious. Didn't have

a stroke/event and my BP was 124/84 when I took it the next morning.

>

>

>> > > > > >

>> > > > > > Cold all the time. Under tons of blankets with feet and hands cold.

Have

>> > > > > > you been properly tested for hypothyroidism? That would be FREE T3,

FREE T4

>> > > > > > and TSH.

>> > > > > >

>> > > > > > Val

>> > > > > >

>> > > > > > From: hyperaldosteronism

>> > > > > > [mailto:hyperaldosteronism ] On Behalf Of StaceyF

>> > > > > >

>> > > > > > No vomit, diarrhea, or excess sweat. Ism cold all the time now.

Under tons

>> > > > > > of blankets and my feet and hands are cold. Was not on diuretics at

the time

>> > > > > > either. My serum K was 3.5. I am having trouble keeping K up even

with diet

>> > > > > > and pill form. It's never gone past 3.8. Just started aldactone so

I hope it

>> > > > > > brings it up. My aldactone dose before was only 25 mg and it did

not really

>> > > > > > increase K to much. Now on 100 mg.

>> > > > > >

>> > > > >

>> > > >

>> > > >

>> > >

>> >

>> >

>>

>

>

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In which data base?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 5, 2012, at 16:45, StaceyF <ssminnow@...> wrote:

Yes for ones that are not already contributed in the data base. Can also scan the bar code and if it has K as part of the nutrition info. There is a lot in the data base already.

> > > > > > > > > > >

> > > > > > > > > > > Stac nice thumbnail.

> > > > > > > > > > > Your saline story is typical. I have done over 1000 I

> > > > would

> > > > > > > > guess. Most have never done one. I think we need to get some

> > > > > > > > instructions to take in so it is done correctly. Based on your

> > > > > > > > thumbnail and pee during saline u have PA.

> > > > > > > > > > >

> > > > > > > > > > > I trust they have their own normals as we use ~ 2 L

> > > > over 4

& g

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If you had been in bed most of the time before this Insuspect I fainted from postural hypotension. Searching for the causes of this on the web is not a good way to spend your time. IMHO. BEWARE of becoming a cyberchondriac which is the modern equivalent of the medical student syndrome. Every time we read about a new disease and all of their manifestations any new twinge of pain etc made us think. OMG I HAVE TSUTSUGAMOCHI DIEASE OR WHATEVER. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 5, 2012, at 16:18, maggiekat7 <ljurkovic@...> wrote:

Don't know about that...no more blood tests of late other than the cultures, but I passed out cold...put that into the mix. Had just finished the antibiotics (21 days, 1600mg cleocin/day). Got a headache while asleep, got up to go get water or possibly tylenol, and passed out cold on a hardwood floor. Ouch! That have anything to do with creatnine or aldo and infections and antibiotics? Can't find anything on the web on this, just curious. Didn't have a stroke/event and my BP was 124/84 when I took it the next morning.

> > > > > >

> > > > > > Cold all the time. Under tons of blankets with feet and hands cold. Have

> > > > > > you been properly tested for hypothyroidism? That would be FREE T3, FREE T4

> > > > > > and TSH.

> > > > > >

> > > > > > Val

> > > > > >

> > > > > > From: hyperaldosteronism

> > > > > > [mailto:hyperaldosteronism ] On Behalf Of StaceyF

> > > > > >

> > > > > > No vomit, diarrhea, or excess sweat. Ism cold all the time now. Under tons

> > > > > > of blankets and my feet and hands are cold. Was not on diuretics at the time

> > > > > > either. My serum K was 3.5. I am having trouble keeping K up even with diet

> > > > > > and pill form. It's never gone past 3.8. Just started aldactone so I hope it

> > > > > > brings it up. My aldactone dose before was only 25 mg and it did not really

> > > > > > increase K to much. Now on 100 mg.

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

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Thanks keep all these details in your story. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 5, 2012, at 16:53, StaceyF <ssminnow@...> wrote:

Sorry, I believe it was Effexor at 150 mg. this is just a guess that it was caused by the meds. Sxs disappeared a month after I was off that medicine. I have been on so many meds to stop the headache that I do not know what side effects are from what.

> > >

> > > Cold all the time. Under tons of blankets with feet and hands cold. Have

> > > you been properly tested for hypothyroidism? That would be FREE T3, FREE T4

> > > and TSH.

> > >

> > > Val

> > >

> > > From: hyperaldosteronism

> > > [mailto:hyperaldosteronism ] On Behalf Of StaceyF

> > >

> > > No vomit, diarrhea, or excess sweat. Ism cold all the time now. Under tons

> > > of blankets and my feet and hands are cold. Was not on diuretics at the time

> > > either. My serum K was 3.5. I am having trouble keeping K up even with diet

> > > and pill form. It's never gone past 3.8. Just started aldactone so I hope it

> > > brings it up. My aldactone dose before was only 25 mg and it did not really

> > > increase K to much. Now on 100 mg.

> > >

> >

> >

>

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Look good as a start as u have more K than Na in urine. But if u pee 2 l a day you are eating about 2x more NA. so u need less Na and /or more Spiro. Get numbers on your saline test for us to look at. How much urine did u pass during saline?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 7, 2012, at 17:12, StaceyF <ssminnow@...> wrote:

So I finally got back into my Endo after waiting 2 months from test date. My aldo supressed on the infusion test so she said even if it is early PA, no one will do surgery. I realize this but wanted to know how to manage it correctly with meds/diet. See if I am taking enough Spiro and if there is something else that can lower my BP as it is still 160/85.

Have been Dashing and taking 40 meq potassium, 100mg spiro, so as you suggested I asked for a spot urine Na K and Creat. I am not sure if they actually did the creat as it did not come back on the report. Will not see the doc until July now.

Urine K was 102.9 meq/L and Urine Na is 72 meq/L. Can you tell by this without the creat. if this means I am doing ok on my K intake. My K in serum has gone up only a bit to 3.8.

Doc ordered new labs but have not had much time to see what they are for. Any ideas? androstenedione, Testosterone total and free, 11-deoxycortisol, 11-deoxycorticosterne, 17-hydrooxyprogesterone, and DHEA sulfate.

Thanks,

Stacey

TAG--- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago

normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7,

headache, new onset HBP, 3 meds with labile BP. High PTH, high bone

ALK phos, need high doses of vit d and Magnesium to stay in normal

range, Diet: salt under 1500 and K+ near 4700 with supplementation

(feel better, but not myself). sx started 3 years ago: brain fog,

fatigue, pain in joints and muscles, exercise intolerence, light

headed, palpitations and above mentioned. SIT- suppressed Aldo with low renin.

> > > > > > >

> > > > > > > > I went ahead and had the saline infusion test done but

> > > > wondered if Dr. Grim could answer a question about it for me. I know

> > > > you do not do it anymore, but I thought that since I do not intake

> > > > much salt it would ensure I got enough to make the test more

> > > > reliable. However, after taking 4 weeks to get the test done and

> > > > today the infusion center had never done one. I brought up the

> > > > protocol I got online for it and this helped them know what tubes to

> > > > use for the lab draw and the positioning issues.

> > > > > > > > I slept for the first 2 hours then had to go to the

> > > > bathroom. I did convince them to let me check my total urine

> > > > eliminated. I saw that the iv had it at a rate of 250ml/hr at that

> > > > time. I questioned the nurse and she looked back and said oh i

> > > > thought it was only 1 liter not 2. 2 hours already into the test and

> > > > i have only gotten in 500ml. She then raised the rate to 810ml/hr

> > > > and was able to get the 2 liters in 2 hours.

> > > > > > > > My question, 1. will that mess up effect the lab results and

> > > > 2. will it effect the urine excretion amount since it was so slow at

> > > > first, then really fast for the last 2 hours. My urine was 1.1L in

> > > > the 4 hours of testing.

> > > > > > > >

> > > > > > > > It will take a week for the labs, but I just wanted to know

> > > > your thoughts so I can be prepared should the results be

> > > > indeterminate.

> > > > > > > >

> > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years

> > > > ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+

> > > > 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH,

> > > > high bone ALK phos, need high doses of vit d and Magnesium to stay

> > > > in normal range, Diet: salt under 1500 and K+ near 4700 with

> > > > supplementation (feel better, but not myself). sx started 3 years

> > > > ago: brain fog, fatigue, pain in joints and muscles, exercise

> > > > intolerence, light headed, palpitations and above mentioned.

> > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

>

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I would say you are the stage of hyperaldo that I call physiologic. The bASIC question is why is your renin very low but also is not. Your are still in the saline suppressible stage. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 9, 2012, at 22:20, StaceyF <ssminnow@...> wrote:

I never pee that much in a day usually. The average was 1.2 L per day. I am always told to drink more, but even with 8-10 glasses per day, I never produce more than 1.5 L. Here are my saline results from before, you had already commented on them as it was in Feb., but here they are again.

Got my results back. Will not convince anyone that I have PA

now.

Renin -.23ng/ml/hr at 8 am and less than .15 ng/ml/hr at 12:45 pm.

aldosterone- 11.8 ng//dl and 3.1 after the infusion.

Cortisol is 10.6 ug/dl at 8 am and 6.3 at 12:45 pm.

Serum K was 3.7 before and 3.6 after. I was doubling my k

supp. so 40 meq and drinking coconut water to get more k and still

has such a low norm level.

NA serum was 138 before and 140 meq/ l after.

My chloride was borderline high at 109 meq/l.

Co2 was low at 22 before and borderline low at 24 meq/l after. From

I passed 1.1L of urine during the test but it was not lab tested.

Also, as a reminder, they did the test wrong on accident and infused .5L in 2 hours, then realized the error and ran it very fast and got the 3.5 in the next 2 hours but blew out my vein.

Do you know why the endo would be doing these other labs. She mentioned congenital adrenal hyperplasia, but I thought that was in kids and you had male sex characteristics and I am not either of them.

androstenedione, Testosterone total and free, 11-deoxycortisol, 11-deoxycorticosterone, 17-hydroxyprogesterone, and DHEA sulfate.

> > > > > > > > >

> > > > > > > > > > I went ahead and had the saline infusion test done but

> > > > > > wondered if Dr. Grim could answer a question about it for me. I know

> > > > > > you do not do it anymore, but I thought that since I do not intake

> > > > >

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Most likely relates to your salt intake. How far back have you been able to track BP readings. Usually starts up slowly. High salt intake make u pee out more K. You might want to try the do the strict dash in chap 9 for the 2 weeks to see if no better. We do not understand why some get the BP EARLier than others. Most likely a combo of genes and envir that raise BP. SOME are SS others weight sen some stress sen some etoh sen. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 10, 2012, at 8:10, StaceyF <ssminnow@...> wrote:

If I am in this stage and I am understanding your article, why am I having sudden onset of high BP, low K that I am having difficulty getting it up with low sodium. Is there anything else that would cause this myriad of sxs, lab abnormalities and hypogammaglobulemia.

> > > > > > > > > > >

> > > > > > > > > > > > I went ahead and had the saline infusion test done but

> > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know

> > > > > > > > you do not do it anymore, but I thought that since I do not intake

> > > > > > >

>

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You may want to try a 2nd opinion with a nephrologist. Two years ago I was Dx with high aldo, low renin, hypoK, neg. CT and I saline supressed. My endo did read Dr. Grimms evolution and felt I was probably in an early stage of PA (supressable). He Dx'd me with hyperaldosteronism but not primary. The Spiro didnt agree with me and HTN wasn't a problem so our focus was to just replace my K and wait. Ended up in Dartmouth Hitchcock hospital and because I had previously saline supressed a nephrologist was brought in to consult and it was discovered I have GitelmansSyndrome which is hyperaldo, and renal K and Mg wasting. Now I realize that my story is unique but I know the frustration of not having a true Dx because you saline supressed. I wish I had gotten

that 2nd opinion 2 years earlier but better late than never! Good luck. Laurie From: <jclark24p@...> hyperaldosteronism Sent: Tuesday, April 10, 2012 6:21 PM Subject: Re: Question about Saline Infusion Test

You are using some big words that I on't know but bet they would recognize them at NIH!

> > > > > > > > > > > >

> > > > > > > > > > > > > I went ahead and had the saline infusion test done but

> > > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know

> > > > > > > > > you do not do it anymore, but I thought that since I do not intake

> > > > > > > >

> >

>

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I saw Dr. Comi who I believe is the Chief of Endocrinology DHMC in Lebanon. I will be seeing him this Fri. It is true DHMC can be hit or miss but Dr. Comi was very knowlegable about PA and was willing to look "outside the box" for me as I supressed. My initial consult with him was routine but I was impressed with all the time and effort he gave me after I left his office and he consulted other collegues in an effort to help me. Laurie From: Francis Bill SUSPECTED PA <georgewbill@...> hyperaldosteronism Sent: Tuesday, April 10, 2012 7:21 PM Subject: Re: Question about Saline Infusion Test

Who did you see at DHMC? There have been At least 4 in this group that haven't had very good luck at DHMC.

> > > > > > > > > > > > >

> > > > > > > > > > > > > > I went ahead and had the saline infusion test done but

> > > > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know

> > > > > > > > > > you do not do it anymore, but I thought that since I do not intake

> > > > > > > > >

> > >

> >

>

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K and Mg. I will be starting amiloride a K sparing diuretic. Indocin a NSAID helps the kidneys hold on to K is used to treat GS but I am allergic to NSAIDS. I was told that spiro can cause me to lose Mg so it's not advised. Laurie From: maggiekat7 <ljurkovic@...> hyperaldosteronism Sent: Tuesday, April 10, 2012 7:14 PM Subject: Re: Question about Saline Infusion Test

Interesting, what is the treatment for what you have?

> > > > > > > > > > > > >

> > > > > > > > > > > > > > I went ahead and had the saline infusion test done but

> > > > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know

> > > > > > > > > > you do not do it anymore, but I thought that since I do not intake

> > > > > > > > >

> > >

> >

>

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: Forgot to say how many times a night do you pee.On Apr 10, 2012, at 5:12 PM, wrote: You won't convince anyone you have what? What is the lab range for your renin. Yes, I have some wild ass guess why they might be doing these tests. Where are you located? I don't know the exact markers they are looking at but you might check out a great resort in Bethesda, MD called NIH! Protocol 00-CH-0160. > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion test done but > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know > > > > > > > you do not do it anymore, but I thought that since I do not intake > > > > > > > much salt it would ensure I got enough to make the test more > > > > > > > reliable. However, after taking 4 weeks to get the test done and > > > > > > > today the infusion center had never done one. I brought up the > > > > > > > protocol I got online for it and this helped them know what tubes to > > > > > > > use for the lab draw and the positioning issues. > > > > > > > > > > > I slept for the first 2 hours then had to go to the > > > > > > > bathroom. I did convince them to let me check my total urine > > > > > > > eliminated. I saw that the iv had it at a rate of 250ml/hr at that > > > > > > > time. I questioned the nurse and she looked back and said oh i > > > > > > > thought it was only 1 liter not 2. 2 hours already into the test and > > > > > > > i have only gotten in 500ml. She then raised the rate to 810ml/hr > > > > > > > and was able to get the 2 liters in 2 hours. > > > > > > > > > > > My question, 1. will that mess up effect the lab results and > > > > > > > 2. will it effect the urine excretion amount since it was so slow at > > > > > > > first, then really fast for the last 2 hours. My urine was 1.1L in > > > > > > > the 4 hours of testing. > > > > > > > > > > > > > > > > > > > > > > It will take a week for the labs, but I just wanted to know > > > > > > > your thoughts so I can be prepared should the results be > > > > > > > indeterminate. > > > > > > > > > > > > > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years > > > > > > > ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ > > > > > > > 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, > > > > > > > high bone ALK phos, need high doses of vit d and Magnesium to stay > > > > > > > in normal range, Diet: salt under 1500 and K+ near 4700 with > > > > > > > supplementation (feel better, but not myself). sx started 3 years > > > > > > > ago: brain fog, fatigue, pain in joints and muscles, exercise > > > > > > > intolerence, light headed, palpitations and above mentioned. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | > > >

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Laurie: Thanks for the update.Curious as Gitelman's almost always has HIGH renin AND high aldosterone due to the salt wasting related to the inherited tubular defect in salt handling in the kidney.Were you retested to document this?Please send more details and which gene problem you have if they have tested you.You detailed story needs to be in our files I would think.Please update your story for our files and exactly what tests you have that led to that diagnosis in the face of low renin and high aldo?How are you being treated? What has helped and what has made things better?Any other affected family members?CE Grim MD On Apr 10, 2012, at 6:09 PM, Laurie Galipeau wrote: You may want to try a 2nd opinion with a nephrologist. Two years ago I was Dx with high aldo, low renin, hypoK, neg. CT and I saline supressed. My endo did read Dr. Grimms evolution and felt I was probably in an early stage of PA (supressable). He Dx'd me with hyperaldosteronism but not primary. The Spiro didnt agree with me and HTN wasn't a problem so our focus was to just replace my K and wait. Ended up in Dartmouth Hitchcock hospital and because I had previously saline supressed a nephrologist was brought in to consult and it was discovered I have GitelmansSyndrome which is hyperaldo, and renal K and Mg wasting. Now I realize that my story is unique but I know the frustration of not having a true Dx because you saline supressed. I wish I had gotten that 2nd opinion 2 years earlier but better late than never! Good luck. Laurie From: <jclark24p@...> hyperaldosteronism Sent: Tuesday, April 10, 2012 6:21 PM Subject: Re: Question about Saline Infusion Test You are using some big words that I on't know but bet they would recognize them at NIH! > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion test done but > > > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know > > > > > > > > > you do not do it anymore, but I thought that since I do not intake > > > > > > > > > > >

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Did you get any better on spiro or did it just not agree with you?CE Grim MDOn Apr 10, 2012, at 7:00 PM, Laurie Galipeau wrote: K and Mg. I will be starting amiloride a K sparing diuretic. Indocin a NSAID helps the kidneys hold on to K is used to treat GS but I am allergic to NSAIDS. I was told that spiro can cause me to lose Mg so it's not advised. Laurie From: maggiekat7 <ljurkovic@...> hyperaldosteronism Sent: Tuesday, April 10, 2012 7:14 PM Subject: Re: Question about Saline Infusion Test Interesting, what is the treatment for what you have? > > > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion test done but > > > > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know > > > > > > > > > > you do not do it anymore, but I thought that since I do not intake > > > > > > > > > > > > > > >

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Certainly excellent credentials. CE Grim MDOn Apr 10, 2012, at 7:31 PM, Francis Bill SUSPECTED PA wrote: Thanks I checked on DHMC site this is his information J. Comi, MD Section Chief, Endocrinology, Diabetes & Metabolism Institution Affiliations: Dartmouth-Hitchcock Medical Center, Lebanon Diabetes Program Endocrinology Endocrinology Fellowship Endocrine Tumors Program Medical School: MD, Harvard Medical School, Boston, MA , 1980 Residency: Massachusetts General Hospital, Boston, MA, Internal Medicine, 1980-83 Fellowship: National Institutes of Health, Bethesda, MD, Endocrinology, Diabetes Branch, 1983-88 Board Certification: Endocrinology & Metabolism, 1987 Internal Medicine, 1983 Specialties: Cancer / Oncology Endocrine Tumors Program Endocrinology Endocrinology - Cancer Joined Staff in 1988 Practice Note: Cystic Fibrosis-Related Diabetes, Diabetes, Diabetic Foot Ulcers, Endocrinology, HIV Related Endocrine Disorder, Hypoglycemia, Insulin Pump, Pituitary Disease, Thyroid Aspiration, Thyroid Disorders. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion test done but > > > > > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know > > > > > > > > > > > you do not do it anymore, but I thought that since I do not intake > > > > > > > > > > > > > > > > > > > >

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Recommend you get to Ann Arbor and see on of the PA experts in the Endocrine Department there.I recommend Dr. Grekin. Tell him I said hello.CE Grim MD On Apr 10, 2012, at 8:56 PM, StaceyF wrote: I won't convince anyone I have PA. I am in Lansing, MI. We have no docs here that have any knowledge of PA. I was diagnosed with hypogammaglobulinemia which is an immune system disorder where my immune system is supressed. > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion test done but > > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know > > > > > > > > you do not do it anymore, but I thought that since I do not intake > > > > > > > > much salt it would ensure I got enough to make the test more > > > > > > > > reliable. However, after taking 4 weeks to get the test done and > > > > > > > > today the infusion center had never done one. I brought up the > > > > > > > > protocol I got online for it and this helped them know what tubes to > > > > > > > > use for the lab draw and the positioning issues. > > > > > > > > > > > > I slept for the first 2 hours then had to go to the > > > > > > > > bathroom. I did convince them to let me check my total urine > > > > > > > > eliminated. I saw that the iv had it at a rate of 250ml/hr at that > > > > > > > > time. I questioned the nurse and she looked back and said oh i > > > > > > > > thought it was only 1 liter not 2. 2 hours already into the test and > > > > > > > > i have only gotten in 500ml. She then raised the rate to 810ml/hr > > > > > > > > and was able to get the 2 liters in 2 hours. > > > > > > > > > > > > My question, 1. will that mess up effect the lab results and > > > > > > > > 2. will it effect the urine excretion amount since it was so slow at > > > > > > > > first, then really fast for the last 2 hours. My urine was 1.1L in > > > > > > > > the 4 hours of testing. > > > > > > > > > > > > > > > > > > > > > > > > It will take a week for the labs, but I just wanted to know > > > > > > > > your thoughts so I can be prepared should the results be > > > > > > > > indeterminate. > > > > > > > > > > > > > > > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years > > > > > > > > ago normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ > > > > > > > > 2.8-3.7, headache, new onset HBP, 3 meds with labile BP. High PTH, > > > > > > > > high bone ALK phos, need high doses of vit d and Magnesium to stay > > > > > > > > in normal range, Diet: salt under 1500 and K+ near 4700 with > > > > > > > > supplementation (feel better, but not myself). sx started 3 years > > > > > > > > ago: brain fog, fatigue, pain in joints and muscles, exercise > > > > > > > > intolerence, light headed, palpitations and above mentioned. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | > > > > > >

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Stacey: low K, your renin and aldo and low BP (if that is what you have) should be the best clue to Gitleman Syndrome.Usually starts as a child.CE Grim MDOn Apr 10, 2012, at 9:00 PM, StaceyF wrote: Interesting. I'm on high dose magnesium to keep it normal. My Vit D is low even on mega dose per week and K low too. this is actually my 4th opinion, one from mayo clinic. We have no nephro that have knowledge of this here, would have to look into it. Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion test done but > > > > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know > > > > > > > > > > you do not do it anymore, but I thought that since I do not intake > > > > > > > > > > > > > > >

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Is that 30 per day and 109 per day. If so good work on the high K intake.Then they should have slowing increasing BPs seen over the time you have been followed by them.Dont know what meds you are on as some cause headaches.On Apr 10, 2012, at 9:08 PM, StaceyF wrote: My initial Urine K was 30 but since on the spiro it is 109. I will try the 2 week dash and see what it does. My BP was high normal until 12/2008. The high BP 170/100 sudden and came the same time my 24/7 headache started. Now it is labile with the meds they try. Some high and some very low. Headache for 3 1/2 years. First time I had a low K was also when I went to ER in 12/2008. My family does have high BP and that is why to many have ignored my sxs. Docs do not believe me that it was sudden onset of BP. > > > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion test done but > > > > > > > > > > wondered if Dr. Grim could answer a question about it for me. I know > > > > > > > > > > you do not do it anymore, but I thought that since I do not intake > > > > > > > > > > > > > > > > >

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The nocturia usually does not start till blood K becomes low.CE Grim MDOn Apr 10, 2012, at 9:09 PM, StaceyF wrote: I do not have to get up at night. That is why I do not seem to fit this disease. > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion test > > done but > > > > > > > > > wondered if Dr. Grim could answer a question about it > > for me. I know > > > > > > > > > you do not do it anymore, but I thought that since I > > do not intake > > > > > > > > > much salt it would ensure I got enough to make the > > test more > > > > > > > > > reliable. However, after taking 4 weeks to get the > > test done and > > > > > > > > > today the infusion center had never done one. I > > brought up the > > > > > > > > > protocol I got online for it and this helped them know > > what tubes to > > > > > > > > > use for the lab draw and the positioning issues. > > > > > > > > > > > > > I slept for the first 2 hours then had to go > > to the > > > > > > > > > bathroom. I did convince them to let me check my total > > urine > > > > > > > > > eliminated. I saw that the iv had it at a rate of > > 250ml/hr at that > > > > > > > > > time. I questioned the nurse and she looked back and > > said oh i > > > > > > > > > thought it was only 1 liter not 2. 2 hours already > > into the test and > > > > > > > > > i have only gotten in 500ml. She then raised the rate > > to 810ml/hr > > > > > > > > > and was able to get the 2 liters in 2 hours. > > > > > > > > > > > > > My question, 1. will that mess up effect the > > lab results and > > > > > > > > > 2. will it effect the urine excretion amount since it > > was so slow at > > > > > > > > > first, then really fast for the last 2 hours. My urine > > was 1.1L in > > > > > > > > > the 4 hours of testing. > > > > > > > > > > > > > > > > > > > > > > > > > > It will take a week for the labs, but I just > > wanted to know > > > > > > > > > your thoughts so I can be prepared should the results be > > > > > > > > > indeterminate. > > > > > > > > > > > > > > > > > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of > > adrenals 1.5 years > > > > > > > > > ago normal. Very Low Renin, normal aldo, ARR: 27. Hx > > of Low K+ > > > > > > > > > 2.8-3.7, headache, new onset HBP, 3 meds with labile > > BP. High PTH, > > > > > > > > > high bone ALK phos, need high doses of vit d and > > Magnesium to stay > > > > > > > > > in normal range, Diet: salt under 1500 and K+ near > > 4700 with > > > > > > > > > supplementation (feel better, but not myself). sx > > started 3 years > > > > > > > > > ago: brain fog, fatigue, pain in joints and muscles, > > exercise > > > > > > > > > intolerence, light headed, palpitations and above > > mentioned. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | > > > > > > > > > > > >

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No. Bartters starts as a child, Gitelmans appears in adulthood and symptoms become more bothersome as we age. Headache can be a symptom of low Mg From: StaceyF <ssminnow@...> hyperaldosteronism Sent:

Wednesday, April 11, 2012 8:15 AM Subject: Re: Question about Saline Infusion Test

Dr. Grim, my first sign of all of this was HIGh BP, Low K and headache. Low renin and normal aldo

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> > > > > > > > > > > > > > > > I went ahead and had the saline infusion

> > test done but

> > > > > > > > > > > > wondered if Dr. Grim could answer a question

> > about it for me. I know

> > > > > > > > > > > > you do not do it anymore, but I thought that

> > since I do not intake

> > > > > > > > > > >

> > > > >

> > > >

> > >

> >

> >

>

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So high BP is unusual in Gitelman because of the salt loss. Some even have a great increase in salt appetite including drinking pickle juice due to the salt depletion.Low renin would be very unusual I would think. The aldo is thought to be high because of the salt loss which turns on renin from the kidney in an attempt to increase salt retention. The high aldo and the decrease in salt reabsorption in the more proximal parts of the renal tubule lead to massive K loss etc. So a DASH diet might make things better because if decreases the salt coming down the tubule and the high K part would help the low K. But would expect a low BP problem.CE Grim MDOn Apr 11, 2012, at 7:49 AM, Laurie Galipeau wrote: No. Bartters starts as a child, Gitelmans appears in adulthood and symptoms become more bothersome as we age. Headache can be a symptom of low Mg From: StaceyF <ssminnow@...> hyperaldosteronism Sent: Wednesday, April 11, 2012 8:15 AM Subject: Re: Question about Saline Infusion Test Dr. Grim, my first sign of all of this was HIGh BP, Low K and headache. Low renin and normal aldo > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion > > test done but > > > > > > > > > > > > wondered if Dr. Grim could answer a question > > about it for me. I know > > > > > > > > > > > > you do not do it anymore, but I thought that > > since I do not intake > > > > > > > > > > > > > > > > > > > > > > > > > > > >

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I often worked up to 400 a day spiro before I began stressing DASH. You can out salt the spiro. CE Grim MDOn Apr 11, 2012, at 8:19 AM, Francis Bill SUSPECTED PA wrote: Can you give more information on what headache is like? Are you also light headed or dizzy? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion > > > test done but > > > > > > > > > > > > > wondered if Dr. Grim could answer a question > > > about it for me. I know > > > > > > > > > > > > > you do not do it anymore, but I thought that > > > since I do not intake > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

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So you have what some call "low renin essential HTN" except for the low K which strongly suggests early PA. CE Grim MDOn Apr 11, 2012, at 7:15 AM, StaceyF wrote: Dr. Grim, my first sign of all of this was HIGh BP, Low K and headache. Low renin and normal aldo > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion > > test done but > > > > > > > > > > > > wondered if Dr. Grim could answer a question > > about it for me. I know > > > > > > > > > > > > you do not do it anymore, but I thought that > > since I do not intake > > > > > > > > > > > > > > > > > > > > > > > > > > > >

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In my lifelong experience in seeing and studying thousands of pts with HTN I find that the use of a history is very unreliable in predicting who has a pheo. I think I have personally cared for about 15 with a proven pheo. Last one was Dxed by colleague during pregnancy and removed during pregnancy by laparoscopy.Laparoscopic removal of a right adrenal pheochromocytoma in a pregnant woman.Demeure MJ, Carlsen B, Traul D, Budney C, Lalande B, Lipinski A, Cruikshank D, Kotchen T, S.J Laparoendosc Adv Surg Tech A. 1998 Oct;8(5):315-9. Review.There are many, many, many patients with HTN who have all the symptoms of a pheo but do not have one. We tend to call it pseudo pheo.So Dx must rely on biochemical testing of catecholamines in urine (my preference) when BP is high. We did this in every patient referred to us at IU for difficult HTN (using an overnight urine collection as this is the period with the lowest cats in it usually) and only found 1 who had not been Dxed before they got to us. That pt had no symptoms and only sign was a single elevated BP by LMD who then sent to us as he was only 21. Our "routine urine" picked up the pheo.CE Grim MdOn Apr 11, 2012, at 12:33 PM, Francis Bill SUSPECTED PA wrote: Headaches and High B/P more likey SX of Pheochromocytomas. But low K doesn't seem to be listed as a SX. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I went ahead and had the saline infusion > > > > > > test done but > > > > > > > > > > > > > > > > wondered if Dr. Grim could answer a question > > > > > > about it for me. I know > > > > > > > > > > > > > > > > you do not do it anymore, but I thought that > > > > > > since I do not intake > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

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