Back Again!

[Guest guest]

Carole, I just read your story and am sorry your daughter is having such a

rough time. My son, Jordan, began having fevers last fall at age 12. He had a

tonsillectomy in August and has been somewhat better. His fevers aren't as

often and usually 101 or lower, but he has most of the other symptoms. I think

he is older to have had his onset at age 12. Best wishes for your daughter.

Machell Nematollahi

Indianapolis, Indiana

[Guest guest]

Carole,

I am not sure how old you can be for Boston Children's, but I know

that several other members of the group have used them and their

Rheumatology department. We've seen Dr. Kim and Dr. .

Others have used Dr. Sundel- maybe if they do not take patients over

the age of 21, you could ask them for a referral to another doctor

in their network.

Babineau

mom to Drew, age 3

town, RI

-- In , " Carole Parrish " <caroleparrish@c...>

wrote:

> I was part of this group a few years ago. Some who have been

around for a while might remember. My daughter, , is 21 and a

Jr. at Duke University. She started having fevers and other

symptoms at 11 months. She would get very sick every 28 days. For a

while, with the help of homeopathics, her symptoms improved. High

school was really hard because she would miss a lot of school and

she was a very conscientious student. Freshman year at college was

worse. Having at college is not fun. Every kid wants their mom

or dad when they have 104 fever. Last year Becca went on cimetidine

and her symptoms improved. She would start to get sick and then end

up with a cold. To kids, a cold is nothing, it was her best

year in a long time.

> This year she continues to get the colds, but everyone is worse

and lately have been every 28 days with sore throat and those awful

cancer sores.

> She is really frustrated which is why I came back to this group.

>

> Here are my questions:

> 1. Is any one else out there with an older patient?

> 2.We have moved to Boston and will be looking for a Dr. who knows

about . CAn anyone refer a Dr. in the Boston area? Durham,

Chapel Hill or Raleigh, N.C.?

>

> And here is my apology:

> I'm sorry if this is discouraging to any parents with younger

kids. Hopefully yours will outgrow long before high school.

>

> Thanks,

> Carole

>

>

[Guest guest]

Carole,

Has been to NIH and visited with Kastner.

I know he would like to see any adult who is getting fevers as you describe!

Has she been tested genetically for the newer mutations that were identified

in the past 4 years at NIH?

Just wondering...

Glad to see you back here.

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Hi Sorry you're back Poor kid:(

We are from the North Shore and take our daughter into Boston Children's to Dr.

Sunde/ Dr Bindsatdt. Not sure if this is helpful since is 21. As Fran

said I wouldtry to get her to NIH.

TRacy

mom to BReana age 4

back again!

I was part of this group a few years ago. Some who have been around for a

while might remember. My daughter, , is 21 and a Jr. at Duke University.

She started having fevers and other symptoms at 11 months. She would get

very sick every 28 days. For a while, with the help of homeopathics, her

symptoms improved. High school was really hard because she would miss a lot of

school and she was a very conscientious student. Freshman year at college was

worse. Having at college is not fun. Every kid wants their mom or dad when

they have 104 fever. Last year Becca went on cimetidine and her symptoms

improved. She would start to get sick and then end up with a cold. To

kids, a cold is nothing, it was her best year in a long time.

This year she continues to get the colds, but everyone is worse and lately

have been every 28 days with sore throat and those awful cancer sores.

She is really frustrated which is why I came back to this group.

Here are my questions:

1. Is any one else out there with an older patient?

2.We have moved to Boston and will be looking for a Dr. who knows about .

CAn anyone refer a Dr. in the Boston area? Durham, Chapel Hill or Raleigh, N.C.?

And here is my apology:

I'm sorry if this is discouraging to any parents with younger kids. Hopefully

yours will outgrow long before high school.

Thanks,

Carole

[Guest guest]

Carole,

I'm sorry to hear that your daughter is having a hard time. I was wondering

if she ever had her tonsis/adnoids removed?

I hope you find some answers soon.

Beverly

back again!

>

> I was part of this group a few years ago. Some who have been around for a

> while might remember. My daughter, , is 21 and a Jr. at Duke

> University. She started having fevers and other symptoms at 11

> months. She would get very sick every 28 days. For a while, with the help

> of homeopathics, her symptoms improved. High school was really hard

> because she would miss a lot of school and she was a very conscientious

> student. Freshman year at college was worse. Having at college is

> not fun. Every kid wants their mom or dad when they have 104 fever. Last

> year Becca went on cimetidine and her symptoms improved. She would start

> to get sick and then end up with a cold. To kids, a cold is nothing,

> it was her best year in a long time.

> This year she continues to get the colds, but everyone is worse and lately

> have been every 28 days with sore throat and those awful cancer sores.

> She is really frustrated which is why I came back to this group.

>

> Here are my questions:

> 1. Is any one else out there with an older patient?

> 2.We have moved to Boston and will be looking for a Dr. who knows about

> . CAn anyone refer a Dr. in the Boston area? Durham, Chapel Hill or

> Raleigh, N.C.?

>

> And here is my apology:

> I'm sorry if this is discouraging to any parents with younger kids.

> Hopefully yours will outgrow long before high school.

>

> Thanks,

> Carole

>

>

[Guest guest]

Hey Miss Mindy 3 lbs and you in another zone. Great work on the Weight loss so far. Keep it up.

NH... Mom to Abby Liz 10/94 Anne 7/99

[Guest guest]

Glad you're back - it's always great when we can

find the diet that works for us!

--- Mindy <missmindy6@...> wrote:

> Hi all - I've been gone for a long time but I'm

> back again. I'm

> trying a new diet (aren't we always trying

> something new?? *lol*)

> I'm using E-Diets.com this time and they have a

> diet called the

> glycemic impact diet that's sposed to be

> perfect for diabetics (which

> I am).

Live, Love, Laugh

[Guest guest]

----- Original Message -----

From: " Mindy " <missmindy6@...>

> The goal of this diet is to

> keep your blood sugars balanced, thus never producing too much

> insuline which makes you feel " starved " .

Sounds great! Keep us posted on how you like the program.

> As for exercise, I've been going for a walk 4-5 times a week (though

> I'm bi-polar and my depression kicked in hard

Way to go with the exercise! I'm waiting for the Lexapro to kick in since I

was just diagnosed with depression. It's like I want to get up and do

something but I just can't make myself do it. I try to make myself do it

but I can't. Very weird for me.

Ann

[Guest guest]

Hi to you all,

Hope you are as well as can be expected. I havent posted here for a about 18

months, i first posted back in 2008.

Ive been feeling poorly on and off for a bout 5 years now, i wont drone on too

much but basically i thought i was hypo as i was having all symptoms, i had a

hysterectomy 12 weeks ago as my periods were very heavy, anyway, although im

pleased i had this done for the above reason, im still feeling lousy.

I managed to lose 2 stone pre op, but have put 1 stone back on since recovery, i

also had to have a sleep test 3 weeks ago as i thought i had sleep apnea, it

appears i havent got that but ive got restless legs, and have cut out caffine as

i used to drink lots of tea! I still cant sleep properly even when im knackered,

yet im still sleeping in the afternoon, i just can stay awake!

They took some bloods and the results came back as follows-

Ferritin 32

TSH 0.19

Free T4 13.4

Now to me that seems low, when ive been tested in the past my ferritin was even

lower, the GP gave me iron tabs (I think 200mgs 3 times a day) which i couldnt

take as they made me vomit and awful pains in the stomach, so i stopped taking

them ( Yes i know thats wrong). Ive been taking B12 and multivits, Vit C, & Mag

Zinc for about 18 months.

Also my TSH when i very first had it tested in 2008 was 0.39, then every time

after that was 1.5 or 1.6 (Normal!!!)

I just want to know why would it go up and down? If its low its can be Hyper,

but all my symptoms suggest Hypo? Im confused. I want to see the GP to discuss

this, but i think hes going to think, here she is again clutching at straws

again!

Any info please,

Best wishes

Caz x

[Guest guest]

Any ideas please????

Thanks

Caz

[Guest guest]

I still cant sleep properly even when im knackered, yet im still sleeping in the

afternoon, i just can stay awake!

> Ferritin 32

> TSH 0.19

> Free T4 13.4

>

> Now to me that seems low, when ive been tested in the past my ferritin was

even lower, the GP gave me iron tabs (I think 200mgs 3 times a day) which i

couldnt take as they made me vomit and awful pains in the stomach, so i stopped

taking them ( Yes i know thats wrong). Ive been taking B12 and multivits, Vit

C, & Mag Zinc for about 18 months.<

Your ferritin is low and you need need to concentrate on getting this level up

to between 70 and 90 for you to feel good. Have you tried Spatone , starting

with 2 to 3 sachets a day. Did you take high doses of vitamin C with your iron

(i.e. 4/5000mgs daily?) This is essential to help with absorption. You should

also be taking 200 mcgs Selenium daily too. You need to concentrate on foods

that are very high in iron content - but don't take any iron anywhere near your

thyroid hormone replacement, it must be taken at least four hours apart - and

preferably, iron should be taken with food, or just after eating.

>

> Also my TSH when i very first had it tested in 2008 was 0.39, then every time

after that was 1.5 or 1.6 (Normal!!!)

> I just want to know why would it go up and down? If its low its can be Hyper,

but all my symptoms suggest Hypo? Im confused. I want to see the GP to discuss

this, but i think hes going to think, here she is again clutching at straws

again!

Your thyroid stimulating hormone (TSH) is controlled by your pituitary gland.

Your pituitary recognises when your thyroid gland is not secreting sufficient

thyroid hormone so it starts secreting sufficient TSH to tell the thyroid gland

to start pumping out more. If it recognises that your thyroid gland IS secreting

sufficient thyroid hormone, then the pituitary has no need to send out any TSH

so the result will remain low. HOWEVER, what the pituitary does NOT recognises

is whether the thyroid hormone being secreted by the thyroid gland is actually

being fully utilised as the cellular level, so you can be suffering with

peripheral thyroid hormone reception and deficiency in the cells in your body

and brain. This is called 'Type 2' hypothyroidism, or Euthyroid Hypometabolism.

Doctors seem to believe that everybody converts T4 to T3 - but they are wrong,

wrong and wrong again.

Luv - Sheila

[Guest guest]

I hope additional testing or a referral to a specialist is being considered.

The low levels of TSH and PTH can also cause " weird " symptoms.

>

> I was posting here in late 2010, as I had been diagnosed with

hyperaldosteronism. It appeared to be secondary aldosteronism caused by the

prescription potassium supplement that I was taking. I was weaned off the

potassium medication and with 2 months the hyperaldosteronism resolved and labs

went back to normal.

> I have been having some weird symptoms again, and sure enough the high

aldosterone is back.

>

> Here are the labs that were done:

>

> Sodium 139 (136-145)

> Potassium 3.8 (3.5-145)

> Chloride 103 (98-107)

> CO2 26 (21-32)

> Ion Gap 14 (10-18)

> BUN 10 (7-18)

> Creatinine .49 L (.51-.95)

> EST GFR >60 (>60)

> Glucose 92 (70-99)

> Calcium 7.7 L (8.5-10.1)

> Phosphorous 3.8 (2.5-4.9)

> Magnesium 1.9 (1.8-2.4)

>

> TSH <.005 L (.358-3.7)

> Free T3 3.70 (2.18-3.98)

> Free T4 .92 (.76-1.46)

>

> PTH <3 L (14-72)

> Vitamin D 49 (30-100)

>

> ACTH Hormone 19 (10-60)

> Cortisol AM 13.6 (4.3-22.4)

> Cortisol PM 3.4 (3.0-16.7)

> Aldosterone 25 H (<21)

> Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8)

> (NA replete, upright. Mean 1.0, <.6-3.0)

>

> Has anyone had hyperaldosteronism come and go like this?

> Since it seemed to resolve itself I never had a scan done for a tumor; now I'm

wondering if it could be a tumor since it is back but I am no longer taking the

medication that we assumed caused it. The last time I had aldosterone tested was

January of 2011, so between then and now it hasn't been tested. I guess it's

possible it could have been high in the meantime but I didn't know it and it

wasn't being tested. I've felt pretty crappy but I have a lot of other medical

conditions that I blame it on.

> Also---does anyone else here with high aldosterone have heat intolerance and

red facial flushing(not rosacea)?

>

> Thank you,

>

>

[Guest guest]

Your have HYPERTHYROIDISM. Are they addressing that? Many symptoms of hyperthyroid mimic wonderfully the symptoms of low potassium. Your potassium was 3.8 but that is IF it was drawn perfect. But you show hyperthyroidism, which reported last year in the news that 1 episdoe of hyperthryoidism in your life just increased your chance for a stroke 3 times. Aldosterone may not be your problem at all. Is your pressure high?

The heat intolerance is absolutely and postively classic for hyperthryoidism. Other things can cause it of course, but it is #1 for hyperthyroid. As is fast heart rate, insomnia, the "paralysis" feeling - that also is common to low potassium, and many other bizarre symptoms like diarrhea, and a strange anxiety (to me, when I had hyperthyroidism, it didn't feel like a "normal" anxiety - I wasn't anxious like I would get when I can't pay the bills or something). But for me insomnia (I would get maybe an hour or two of sleep some weeks because my brain would never shut off.) and feeling HOT all the time were #1 and # 2 of my bothersome symptoms. Having both makes me anyway, feel double worse. Oh yeah weight loss that I didn't notice also, but one month it reached 17 lbs and the doc asked me about it - s he did my heart rate of 140 that I didn't know was that high - that was the most I lost ever. It seemed I would lose and gain

over a few months in 2009/2010. And for you periods can be all screwed up.

Either way, I felt literally like I was already in hell when my thyroid was high - low tsh and high T3.T4 is HIGH thyroid - not low - usually - there's some weird exceptions Dr G is certainkly more familiar with......and as for being in hell I was not ready to go there just yet.

Your labs show hyperthyroid. Tell me they addressed that first, because it has a potential to be a faster killer.

Just tell me they have addressed this already...........

From: lk.barns <lk.barns@...>Subject: Re: Back again!hyperaldosteronism Date: Wednesday, May 2, 2012, 8:06 PM

I hope additional testing or a referral to a specialist is being considered. The low levels of TSH and PTH can also cause "weird" symptoms.>> I was posting here in late 2010, as I had been diagnosed with hyperaldosteronism. It appeared to be secondary aldosteronism caused by the prescription potassium supplement that I was taking. I was weaned off the potassium medication and with 2 months the hyperaldosteronism resolved and labs went back to normal. > I have been having some weird symptoms again, and sure enough the high aldosterone is back.> > Here are the labs that were done:> > Sodium 139 (136-145)> Potassium 3.8

(3.5-145)> Chloride 103 (98-107)> CO2 26 (21-32)> Ion Gap 14 (10-18)> BUN 10 (7-18)> Creatinine .49 L (.51-.95)> EST GFR >60 (>60)> Glucose 92 (70-99)> Calcium 7.7 L (8.5-10.1)> Phosphorous 3.8 (2.5-4.9)> Magnesium 1.9 (1.8-2.4)> > TSH <.005 L (.358-3.7)> Free T3 3.70 (2.18-3.98)> Free T4 .92 (.76-1.46)> > PTH <3 L (14-72)> Vitamin D 49 (30-100)> > ACTH Hormone 19 (10-60)> Cortisol AM 13.6 (4.3-22.4)> Cortisol PM 3.4 (3.0-16.7)> Aldosterone 25 H (<21)> Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8)> (NA replete, upright. Mean 1.0, <.6-3.0)> > Has anyone had hyperaldosteronism come and go like this? > Since it seemed to resolve itself I never had a scan done for a tumor; now I'm wondering if it could be a tumor since it is back but I am no longer

taking the medication that we assumed caused it. The last time I had aldosterone tested was January of 2011, so between then and now it hasn't been tested. I guess it's possible it could have been high in the meantime but I didn't know it and it wasn't being tested. I've felt pretty crappy but I have a lot of other medical conditions that I blame it on.> Also---does anyone else here with high aldosterone have heat intolerance and red facial flushing(not rosacea)?> > Thank you, > >

[Guest guest]

I read the T4 wrong. I thought it was "4.92" not .92. Sorry. Still, your T3 is at the threshhold.

My sis-in-law, my wifes identical twin sister, just had her thyroid pulled in Lost Wages Nevada and for going on 10 years, she has been with all these symptoms, and her T3 was high - barely, and she always had a normal T4 and unreadable TSH. Well, she just had hers out and it was Graves AND cancerous, but not the fast spreading or most dangerous kind. The endocrinologist told my bro-in-law it was the hardest he ever took it (and the surgery went 2 hours longer than it should have) because it was alot bigger than the ultrasounds had shown and he couldn't get it all without alot of work. But they told her her margins were all clear and so no chemo or radiation. AND she already feels 100 times better she says.

She saw many docs in salt lake, cedar city, St , Utah and Las Vegas and they could never agree if she had it or not until the doc in vegas saw her and said immediately it was Graves. He was right on - even with the labs not being "perfect" for hyper.

From: lk.barns <lk.barns@...>Subject: Re: Back again!hyperaldosteronism Date: Wednesday, May 2, 2012, 8:06 PM

I hope additional testing or a referral to a specialist is being considered. The low levels of TSH and PTH can also cause "weird" symptoms.>> I was posting here in late 2010, as I had been diagnosed with hyperaldosteronism. It appeared to be secondary aldosteronism caused by the prescription potassium supplement that I was taking. I was weaned off the potassium medication and with 2 months the hyperaldosteronism resolved and labs went back to normal. > I have been having some weird symptoms again, and sure enough the high aldosterone is back.> > Here are the labs that were done:> > Sodium 139 (136-145)> Potassium 3.8

(3.5-145)> Chloride 103 (98-107)> CO2 26 (21-32)> Ion Gap 14 (10-18)> BUN 10 (7-18)> Creatinine .49 L (.51-.95)> EST GFR >60 (>60)> Glucose 92 (70-99)> Calcium 7.7 L (8.5-10.1)> Phosphorous 3.8 (2.5-4.9)> Magnesium 1.9 (1.8-2.4)> > TSH <.005 L (.358-3.7)> Free T3 3.70 (2.18-3.98)> Free T4 .92 (.76-1.46)> > PTH <3 L (14-72)> Vitamin D 49 (30-100)> > ACTH Hormone 19 (10-60)> Cortisol AM 13.6 (4.3-22.4)> Cortisol PM 3.4 (3.0-16.7)> Aldosterone 25 H (<21)> Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8)> (NA replete, upright. Mean 1.0, <.6-3.0)> > Has anyone had hyperaldosteronism come and go like this? > Since it seemed to resolve itself I never had a scan done for a tumor; now I'm wondering if it could be a tumor since it is back but I am no longer

taking the medication that we assumed caused it. The last time I had aldosterone tested was January of 2011, so between then and now it hasn't been tested. I guess it's possible it could have been high in the meantime but I didn't know it and it wasn't being tested. I've felt pretty crappy but I have a lot of other medical conditions that I blame it on.> Also---does anyone else here with high aldosterone have heat intolerance and red facial flushing(not rosacea)?> > Thank you, > >

[Guest guest]

I'll second that from a patient point of view. iF I hit 1400 of sodium a day, that is, go to Golden Corral's buffet or have pizza night, my bp is up, no exceptions. When I first got on this list and really realized how serious the DASH diet was in my case of PA, just getting under 1400 sometimes got my BP too low.

I stayed out of this because of the thyroid issue and it looks like you and have discussed that. Are you on any MCB (Spiro or Epler)? If you had PA and if it was resolved and now you feel it is coming back I would blame sodium (NA) first. Dr. Grim says PA can sometimes be controlled by diet, in fact I believe is off spiro now. Are you DASHing? DASH like your health depended on it(or something like that Dr. Grim always says!)> > >> > > I was posting here in late 2010, as I had been diagnosed with hyperaldosteronism. It appeared to be secondary aldosteronism caused by the prescription potassium supplement that I was taking. I was weaned off the potassium medication and with 2 months the hyperaldosteronism resolved and labs went back to normal. > > > I have been having some weird symptoms again, and sure enough the high aldosterone is back.> > > > > > Here are the labs that were done:> > > > > > Sodium 139 (136-145)> > > Potassium 3.8 (3.5-145)> > > Chloride 103 (98-107)> > > CO2 26 (21-32)>

> > Ion Gap 14 (10-18)> > > BUN 10 (7-18)> > > Creatinine .49 L (.51-.95)> > > EST GFR >60 (>60)> > > Glucose 92 (70-99)> > > Calcium 7.7 L (8.5-10.1)> > > Phosphorous 3.8 (2.5-4.9)> > > Magnesium 1.9 (1.8-2.4)> > > > > > TSH <.005 L (.358-3.7)> > > Free T3 3.70 (2.18-3.98)> > > Free T4 .92 (.76-1.46)> > > > > > PTH <3 L (14-72)> > > Vitamin D 49 (30-100)> > > > > > ACTH Hormone 19 (10-60)> > > Cortisol AM 13.6 (4.3-22.4)> > > Cortisol PM 3.4 (3.0-16.7)> > > Aldosterone 25 H (<21)> > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8)> > > (NA replete, upright. Mean 1.0, <.6-3.0)> > > > > > Has anyone had hyperaldosteronism come and

go like this? > > > Since it seemed to resolve itself I never had a scan done for a tumor; now I'm wondering if it could be a tumor since it is back but I am no longer taking the medication that we assumed caused it. The last time I had aldosterone tested was January of 2011, so between then and now it hasn't been tested. I guess it's possible it could have been high in the meantime but I didn't know it and it wasn't being tested. I've felt pretty crappy but I have a lot of other medical conditions that I blame it on.> > > Also---does anyone else here with high aldosterone have heat intolerance and red facial flushing(not rosacea)?> > > > > > Thank you, > > > > > >> >>

[Guest guest]

They don't seem to parallel each other in many things health wise. They are different eaters and the twin is not in a very happy marriage so she has many more somatic type complaints IF that has anything to do with it. My wife is not a complainer for sure - but you're right about one thing, in their family, HTN and sudden death does exist. I try to get her on DASH with me, but she's not quite there yet.

Thanks for your response.I had a total thyroidectomy in 2008 for what turned out to be a benign cyst. I had normal thyroid function before my thyroidectomy. Unfortunately this surgery left me with the complication of hypoparathyroidism, hence the low PTH and low calcium. Regarding my thyroid levels; I am on a T3 medication which automatically supresses TSH. My endocrinologist is following my T3 and T4 levels, and not the TSH so much. My TSH remains the same even with below range free t3 and free t4 levels and glaring hypothyroid symptoms.I suffered on Synthroid for 3 years because I was not converting the Synthroid(t4) into active T3. So we are comfortable with my thyroid levels and I feel much better thyroid symptom-wise. There is not much that can be done about the hypoparathyroidism, low PTH and low calcium; they like my calcium at the bottom of range or just below and I am fairly symptom-free. Agreed, my Calcium was a little

too low here and I have raised my dose.I was very sick with hyperaldosterone symptoms( and labs to match) in 2010, and now aldosterone is raised again and the symptoms are creeping back in....dizziness, nighttime urination, BP higher than my usual, excessive startle reflex, headaches....I don't want to be sick again like I was two years ago.And my potassium began dropping below range again in February. I had a normal potassium draw for these labs because I was supplementing potassium.I was just wondering if anyone has had hyperaldosteronism come and go like that. I guess there is a chance that maybe it didn't go away completely. After my January 2011 aldosterone test that came back as 28 my doctor never tested it again until a new doctor tested it last week.> >> > I was posting here in late 2010, as I had been diagnosed with hyperaldosteronism. It appeared to be secondary aldosteronism caused by the prescription potassium supplement that I was taking. I was weaned off the potassium medication and with 2 months the hyperaldosteronism resolved and labs went back to normal. > > I have been having some weird symptoms again, and sure enough the high aldosterone is back.> > > > Here are the labs that were done:> > > > Sodium 139 (136-145)> > Potassium 3.8 (3.5-145)> > Chloride 103

(98-107)> > CO2 26 (21-32)> > Ion Gap 14 (10-18)> > BUN 10 (7-18)> > Creatinine .49 L (.51-.95)> > EST GFR >60 (>60)> > Glucose 92 (70-99)> > Calcium 7.7 L (8.5-10.1)> > Phosphorous 3.8 (2.5-4.9)> > Magnesium 1.9 (1.8-2.4)> > > > TSH <.005 L (.358-3.7)> > Free T3 3.70 (2.18-3.98)> > Free T4 .92 (.76-1.46)> > > > PTH <3 L (14-72)> > Vitamin D 49 (30-100)> > > > ACTH Hormone 19 (10-60)> > Cortisol AM 13.6 (4.3-22.4)> > Cortisol PM 3.4 (3.0-16.7)> > Aldosterone 25 H (<21)> > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8)> > (NA replete, upright. Mean 1.0, <.6-3.0)> > > > Has anyone had hyperaldosteronism come and go like this? > > Since it seemed to resolve itself I never had a

scan done for a tumor; now I'm wondering if it could be a tumor since it is back but I am no longer taking the medication that we assumed caused it. The last time I had aldosterone tested was January of 2011, so between then and now it hasn't been tested. I guess it's possible it could have been high in the meantime but I didn't know it and it wasn't being tested. I've felt pretty crappy but I have a lot of other medical conditions that I blame it on.> > Also---does anyone else here with high aldosterone have heat intolerance and red facial flushing(not rosacea)?> > > > Thank you, > > > >>

[Guest guest]

DASH has so far been very good to me and I have stopped the spiro. And though, while I am no where near the sports freak I used to be, I can now exercise again and no doubt that helps my heart, my testosterone, my psyche most importantly - thanks to fixing my K I can exercise again, and seem to get better as to the HTN and heart as time goes on. I realize everyone's situation is not the same, but my reaction to spiro the first time was very dramatic and convincing.

I am still battling anemia now for some reason which was down again last week even though I am taking iron tid. But that shouldn't be connected to the PA. My TSH dipped again to below normal a couple months back, and I could tell thyroid was starting to act up, right after the flu in January, but I just had it drawn and it was good and didn't set it off completely, maybe because now I am not fighting the Conn's syndrome - And I can tell, because the thyroid symptoms I get - the flushing, heat intolerance, etc. are not there.

From: <jclark24p@...>Subject: Re: Back again!hyperaldosteronism Date: Thursday, May 3, 2012, 9:26 AM

I stayed out of this because of the thyroid issue and it looks like you and have discussed that. Are you on any MCB (Spiro or Epler)? If you had PA and if it was resolved and now you feel it is coming back I would blame sodium (NA) first. Dr. Grim says PA can sometimes be controlled by diet, in fact I believe is off spiro now. Are you DASHing? DASH like your health depended on it(or something like that Dr. Grim always says!)> > >> > > I was posting here in late 2010, as I had been diagnosed with hyperaldosteronism. It appeared to be secondary aldosteronism caused by the prescription potassium supplement that I was taking. I was weaned off the potassium medication and with 2 months the hyperaldosteronism resolved and labs went back to normal. > > > I have been having some weird symptoms again, and sure enough the high aldosterone is back.> > > > > > Here are the labs that were done:> > > > > > Sodium 139 (136-145)> > > Potassium 3.8 (3.5-145)> > > Chloride 103 (98-107)> > > CO2 26 (21-32)>

> > Ion Gap 14 (10-18)> > > BUN 10 (7-18)> > > Creatinine .49 L (.51-.95)> > > EST GFR >60 (>60)> > > Glucose 92 (70-99)> > > Calcium 7.7 L (8.5-10.1)> > > Phosphorous 3.8 (2.5-4.9)> > > Magnesium 1.9 (1.8-2.4)> > > > > > TSH <.005 L (.358-3.7)> > > Free T3 3.70 (2.18-3.98)> > > Free T4 .92 (.76-1.46)> > > > > > PTH <3 L (14-72)> > > Vitamin D 49 (30-100)> > > > > > ACTH Hormone 19 (10-60)> > > Cortisol AM 13.6 (4.3-22.4)> > > Cortisol PM 3.4 (3.0-16.7)> > > Aldosterone 25 H (<21)> > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8)> > > (NA replete, upright. Mean 1.0, <.6-3.0)> > > > > > Has anyone had hyperaldosteronism come and

go like this? > > > Since it seemed to resolve itself I never had a scan done for a tumor; now I'm wondering if it could be a tumor since it is back but I am no longer taking the medication that we assumed caused it. The last time I had aldosterone tested was January of 2011, so between then and now it hasn't been tested. I guess it's possible it could have been high in the meantime but I didn't know it and it wasn't being tested. I've felt pretty crappy but I have a lot of other medical conditions that I blame it on.> > > Also---does anyone else here with high aldosterone have heat intolerance and red facial flushing(not rosacea)?> > > > > > Thank you, > > > > > >> >>

[Guest guest]

What did the parathyroid pathology show?This is a not uncommon complication of thyroid surgery. Even in the best of hands.CE Grim MDOn May 3, 2012, at 6:58 AM, Dillon wrote: Thanks for your response. I had a total thyroidectomy in 2008 for what turned out to be a benign cyst. I had normal thyroid function before my thyroidectomy. Unfortunately this surgery left me with the complication of hypoparathyroidism, hence the low PTH and low calcium. Regarding my thyroid levels; I am on a T3 medication which automatically supresses TSH. My endocrinologist is following my T3 and T4 levels, and not the TSH so much. My TSH remains the same even with below range free t3 and free t4 levels and glaring hypothyroid symptoms. I suffered on Synthroid for 3 years because I was not converting the Synthroid(t4) into active T3. So we are comfortable with my thyroid levels and I feel much better thyroid symptom-wise. There is not much that can be done about the hypoparathyroidism, low PTH and low calcium; they like my calcium at the bottom of range or just below and I am fairly symptom-free. Agreed, my Calcium was a little too low here and I have raised my dose. I was very sick with hyperaldosterone symptoms( and labs to match) in 2010, and now aldosterone is raised again and the symptoms are creeping back in....dizziness, nighttime urination, BP higher than my usual, excessive startle reflex, headaches....I don't want to be sick again like I was two years ago. And my potassium began dropping below range again in February. I had a normal potassium draw for these labs because I was supplementing potassium. I was just wondering if anyone has had hyperaldosteronism come and go like that. I guess there is a chance that maybe it didn't go away completely. After my January 2011 aldosterone test that came back as 28 my doctor never tested it again until a new doctor tested it last week. > > > > I was posting here in late 2010, as I had been diagnosed with hyperaldosteronism. It appeared to be secondary aldosteronism caused by the prescription potassium supplement that I was taking. I was weaned off the potassium medication and with 2 months the hyperaldosteronism resolved and labs went back to normal. > > I have been having some weird symptoms again, and sure enough the high aldosterone is back. > > > > Here are the labs that were done: > > > > Sodium 139 (136-145) > > Potassium 3.8 (3.5-145) > > Chloride 103 (98-107) > > CO2 26 (21-32) > > Ion Gap 14 (10-18) > > BUN 10 (7-18) > > Creatinine .49 L (.51-.95) > > EST GFR >60 (>60) > > Glucose 92 (70-99) > > Calcium 7.7 L (8.5-10.1) > > Phosphorous 3.8 (2.5-4.9) > > Magnesium 1.9 (1.8-2.4) > > > > TSH <.005 L (.358-3.7) > > Free T3 3.70 (2.18-3.98) > > Free T4 .92 (.76-1.46) > > > > PTH <3 L (14-72) > > Vitamin D 49 (30-100) > > > > ACTH Hormone 19 (10-60) > > Cortisol AM 13.6 (4.3-22.4) > > Cortisol PM 3.4 (3.0-16.7) > > Aldosterone 25 H (<21) > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8) > > (NA replete, upright. Mean 1.0, <.6-3.0) > > > > Has anyone had hyperaldosteronism come and go like this? > > Since it seemed to resolve itself I never had a scan done for a tumor; now I'm wondering if it could be a tumor since it is back but I am no longer taking the medication that we assumed caused it. The last time I had aldosterone tested was January of 2011, so between then and now it hasn't been tested. I guess it's possible it could have been high in the meantime but I didn't know it and it wasn't being tested. I've felt pretty crappy but I have a lot of other medical conditions that I blame it on. > > Also---does anyone else here with high aldosterone have heat intolerance and red facial flushing(not rosacea)? > > > > Thank you, > > > > >

[Guest guest]

Your doctor is probably right that the flank pain is not being caused by an

adrenal tumor. However, if you have an adrenal adenoma that is producing excess

aldosterone, the excess might be causing the pain! I base this in my

experience, I had/have rt. flank pain. When all PA SXs were controlled with

Spiro the pain went away. Now that I am off spiro the pain is back so I

consider that an unscientific trial of one!

If I wanted to put the question of PA to bed I would start with a valid ARR

test. Do you have any numbers for renin? A ct-scan will not really tell you

much unless one or both of your adrenals are enlarged! (If that is the case

email me and I will have sugggestions!) Even if they see a tumor it really

doesn't mean much unless it is large and there are other things they look at

(highly unlikely).

> > >> >

> > >> > > I was posting here in late 2010, as I had been diagnosed with

> > >> > > hyperaldosteronism. It appeared to be secondary aldosteronism

> > >> caused

> > >> > > by the prescription potassium supplement that I was taking. I was

> > >> > > weaned off the potassium medication and with 2 months the

> > >> > > hyperaldosteronism resolved and labs went back to normal.

> > >> > > I have been having some weird symptoms again, and sure enough the

> > >> > > high aldosterone is back.

> > >> > >

> > >> > > Here are the labs that were done:

> > >> > >

> > >> > > Sodium 139 (136-145)

> > >> > > Potassium 3.8 (3.5-145)

> > >> > > Chloride 103 (98-107)

> > >> > > CO2 26 (21-32)

> > >> > > Ion Gap 14 (10-18)

> > >> > > BUN 10 (7-18)

> > >> > > Creatinine .49 L (.51-.95)

> > >> > > EST GFR >60 (>60)

> > >> > > Glucose 92 (70-99)

> > >> > > Calcium 7.7 L (8.5-10.1)

> > >> > > Phosphorous 3.8 (2.5-4.9)

> > >> > > Magnesium 1.9 (1.8-2.4)

> > >> > >

> > >> > > TSH <.005 L (.358-3.7)

> > >> > > Free T3 3.70 (2.18-3.98)

> > >> > > Free T4 .92 (.76-1.46)

> > >> > >

> > >> > > PTH <3 L (14-72)

> > >> > > Vitamin D 49 (30-100)

> > >> > >

> > >> > > ACTH Hormone 19 (10-60)

> > >> > > Cortisol AM 13.6 (4.3-22.4)

> > >> > > Cortisol PM 3.4 (3.0-16.7)

> > >> > > Aldosterone 25 H (<21)

> > >> > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8)

> > >> > > (NA replete, upright. Mean 1.0, <.6-3.0)

> > >> > >

> > >> > > Has anyone had hyperaldosteronism come and go like this?

> > >> > > Since it seemed to resolve itself I never had a scan done for a

> > >> > > tumor; now I'm wondering if it could be a tumor since it is

> > >> back but

> > >> > > I am no longer taking the medication that we assumed caused it.

> > >> The

> > >> > > last time I had aldosterone tested was January of 2011, so

> > >> between

> > >> > > then and now it hasn't been tested. I guess it's possible it

> > >> could

> > >> > > have been high in the meantime but I didn't know it and it wasn't

> > >> > > being tested. I've felt pretty crappy but I have a lot of other

> > >> > > medical conditions that I blame it on.

> > >> > > Also---does anyone else here with high aldosterone have heat

> > >> > > intolerance and red facial flushing(not rosacea)?

> > >> > >

> > >> > > Thank you,

> > >> > >

> > >> > >

> > >> > >

> > >> >

> > >>

> > >

> > >

> >

>

[Guest guest]

It is difficult to do a throidectomy without touching the paratys as they are often in the T. Did they take the entire thyroid out? or just a lobe? Again need all the info.Ho wait a minute!You had cisplatin chemotherapy for tonsil cancer and did not tell us?! How long and what else did you get for that. Radiation. Radiation to the tonsil thryoid area can affect the baroreceptors and make BP very labile.When we ask for your story we want all of it. Withholding information like this to health care providers is risky to your health. Trust you do not do this with others trying to help.Anyway have you had spot urine albumin/creatine since the cisplat? I would Plot you eGFR as far back as you can go as well to assure that it is steady. Pain in the flank in PA seems to be common. But no one has ever done a study of the "pain" going away after surgery. In the old days of course adrenal surgery was big surgery (and still is) unless done thru the band aid. So in the old days the pains after the surgery seemed to outshadow the pain before. So we need in our data file if we ever get it up and going a section on back/flank pain before and after surgery. On May 4, 2012, at 2:59 PM, Dillon wrote: I never saw my pathology report from my thyroidectomy in 2008, but was told it showed a benign nodule. The surgeon told me that she did not touch my parathyroids; even though I spent a week in the hospital hooked up to IV's of calcium, magnesium, and potassium immediately after surgery. Many months later, another doctor told me that there was at least one parathyroid gland in my pathology. Before this surgery I had completely normal electrolyte levels. No problems whatsoever. And no parathyroid problems, my CA levels were always perfect at 9.1. Even my thyroid levels were good prior to surgery. In 2007 I had 3 doses of Cisplatin chemotherapy agent for tonsil cancer. Cisplatin is known to cause kidney damage, but my kidney function has always been fine. I'm not sure if the Cisplatin factors into this, electrolytes were fine post cancer treatment. I am told that it should not factor in to this since my kidney function tests always come back normal, but I know kidneys play a role in electrolyte balance. So for now, I will increase mag, eat high potassium foods and retest. Depending upon the results of the bloodwork, I will attack it from the sodium angle(because I don't want to change too much all at once). In your opinion, should my doctor order the CT scan of adrenals just to put the idea of PA to rest? She is really baffled by all of this. One more symptom I am having that I almost forgot about----I have a nagging left flank pain both times aldo was high. My doctor said that is meaningless since adrenal tumors are painless. Is that correct? > >> > > >> > > I was posting here in late 2010, as I had been diagnosed with > >> > > hyperaldosteronism. It appeared to be secondary aldosteronism > >> caused > >> > > by the prescription potassium supplement that I was taking. I was > >> > > weaned off the potassium medication and with 2 months the > >> > > hyperaldosteronism resolved and labs went back to normal. > >> > > I have been having some weird symptoms again, and sure enough the > >> > > high aldosterone is back. > >> > > > >> > > Here are the labs that were done: > >> > > > >> > > Sodium 139 (136-145) > >> > > Potassium 3.8 (3.5-145) > >> > > Chloride 103 (98-107) > >> > > CO2 26 (21-32) > >> > > Ion Gap 14 (10-18) > >> > > BUN 10 (7-18) > >> > > Creatinine .49 L (.51-.95) > >> > > EST GFR >60 (>60) > >> > > Glucose 92 (70-99) > >> > > Calcium 7.7 L (8.5-10.1) > >> > > Phosphorous 3.8 (2.5-4.9) > >> > > Magnesium 1.9 (1.8-2.4) > >> > > > >> > > TSH <.005 L (.358-3.7) > >> > > Free T3 3.70 (2.18-3.98) > >> > > Free T4 .92 (.76-1.46) > >> > > > >> > > PTH <3 L (14-72) > >> > > Vitamin D 49 (30-100) > >> > > > >> > > ACTH Hormone 19 (10-60) > >> > > Cortisol AM 13.6 (4.3-22.4) > >> > > Cortisol PM 3.4 (3.0-16.7) > >> > > Aldosterone 25 H (<21) > >> > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8) > >> > > (NA replete, upright. Mean 1.0, <.6-3.0) > >> > > > >> > > Has anyone had hyperaldosteronism come and go like this? > >> > > Since it seemed to resolve itself I never had a scan done for a > >> > > tumor; now I'm wondering if it could be a tumor since it is > >> back but > >> > > I am no longer taking the medication that we assumed caused it. > >> The > >> > > last time I had aldosterone tested was January of 2011, so > >> between > >> > > then and now it hasn't been tested. I guess it's possible it > >> could > >> > > have been high in the meantime but I didn't know it and it wasn't > >> > > being tested. I've felt pretty crappy but I have a lot of other > >> > > medical conditions that I blame it on. > >> > > Also---does anyone else here with high aldosterone have heat > >> > > intolerance and red facial flushing(not rosacea)? > >> > > > >> > > Thank you, > >> > > > >> > > > >> > > > >> > > >> > > > > >

[Guest guest]

My thyroidectomy was a total thyroidectomy. The electrolyte imbalances began

immediately after surgery. My thyroidectomy was in 2008.

In 2007, I had a tonsillectomy that revealed stage 2/3 HPV+ tonsil cancer. I

had three rounds of cisplatin, each three weeks apart. I also had 7 weeks of

bilateral IMRT, 70gy, I believe. I had a feeding tube.

I don't know what a spot urine albumin/creatinine test is. I have had frequent

albumin and creatinine serum labs. While my eGFR has always been normal, I will

check to see if it was 'steady'.

I have endometriosis and ovarian cysts.

I have severe environmental allergies.

I have chronic low white blood cell counts(no reason found)

I have macrocytic anemia of unknown origin. It was not caused by the

chemotherapy, as it was already occuring before the chemo.

I had an endometrial ablation in 2009.

I have a history of sinusitis and migraines.

I have a history of cervical cancer(1991).

My aldosterone level was 25

My renin level was 1.4

My doctors are aware of my complete medical history.

> > > >> >

> > > >> > > I was posting here in late 2010, as I had been diagnosed with

> > > >> > > hyperaldosteronism. It appeared to be secondary aldosteronism

> > > >> caused

> > > >> > > by the prescription potassium supplement that I was taking.

> > I was

> > > >> > > weaned off the potassium medication and with 2 months the

> > > >> > > hyperaldosteronism resolved and labs went back to normal.

> > > >> > > I have been having some weird symptoms again, and sure

> > enough the

> > > >> > > high aldosterone is back.

> > > >> > >

> > > >> > > Here are the labs that were done:

> > > >> > >

> > > >> > > Sodium 139 (136-145)

> > > >> > > Potassium 3.8 (3.5-145)

> > > >> > > Chloride 103 (98-107)

> > > >> > > CO2 26 (21-32)

> > > >> > > Ion Gap 14 (10-18)

> > > >> > > BUN 10 (7-18)

> > > >> > > Creatinine .49 L (.51-.95)

> > > >> > > EST GFR >60 (>60)

> > > >> > > Glucose 92 (70-99)

> > > >> > > Calcium 7.7 L (8.5-10.1)

> > > >> > > Phosphorous 3.8 (2.5-4.9)

> > > >> > > Magnesium 1.9 (1.8-2.4)

> > > >> > >

> > > >> > > TSH <.005 L (.358-3.7)

> > > >> > > Free T3 3.70 (2.18-3.98)

> > > >> > > Free T4 .92 (.76-1.46)

> > > >> > >

> > > >> > > PTH <3 L (14-72)

> > > >> > > Vitamin D 49 (30-100)

> > > >> > >

> > > >> > > ACTH Hormone 19 (10-60)

> > > >> > > Cortisol AM 13.6 (4.3-22.4)

> > > >> > > Cortisol PM 3.4 (3.0-16.7)

> > > >> > > Aldosterone 25 H (<21)

> > > >> > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8)

> > > >> > > (NA replete, upright. Mean 1.0, <.6-3.0)

> > > >> > >

> > > >> > > Has anyone had hyperaldosteronism come and go like this?

> > > >> > > Since it seemed to resolve itself I never had a scan done

> > for a

> > > >> > > tumor; now I'm wondering if it could be a tumor since it is

> > > >> back but

> > > >> > > I am no longer taking the medication that we assumed caused

> > it.

> > > >> The

> > > >> > > last time I had aldosterone tested was January of 2011, so

> > > >> between

> > > >> > > then and now it hasn't been tested. I guess it's possible it

> > > >> could

> > > >> > > have been high in the meantime but I didn't know it and it

> > wasn't

> > > >> > > being tested. I've felt pretty crappy but I have a lot of

> > other

> > > >> > > medical conditions that I blame it on.

> > > >> > > Also---does anyone else here with high aldosterone have heat

> > > >> > > intolerance and red facial flushing(not rosacea)?

> > > >> > >

> > > >> > > Thank you,

> > > >> > >

> > > >> > >

> > > >> > >

> > > >> >

> > > >>

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Interesting. If I were to think of how an adrenal adenoma might cause pain I have to consider:1. The adrenal is usually sounded by a lot of fat so a small tumor should not press on anything but fat.2. The Classic Conn's adenoma does have a capsule around it and as it got bigger this capsule might stretch and cause some pain but do not know if there are pain fibers in the adrenal or capsule. Good project for a pathologist student. 3. How would spiro affect this? Spiro can be stored in the adrenals as spironolactone bodies but don't suspect this would reduce pain. Dont know if there eplereonone bodies. Prob no one has looked as need to do electron microscopy. Ask the NIH team next time you are there. 4. Spiro increases K and K might make the adrenal work harder making more aldo. This swelling could hurt. not likely5. The pain comes results from a high urine volume with a blockage somewhere in the drainage system so that the pressure builds up and this hurts. Has been given the title of a Ditel's crisis. Might get worse with high salt ingestion or lasix (suddenly). Does salt or diuretics help or hurt on that side? But mostly just thinking here and prob other causes one could come up with.CE Grim MD On May 4, 2012, at 3:49 PM, wrote: Your doctor is probably right that the flank pain is not being caused by an adrenal tumor. However, if you have an adrenal adenoma that is producing excess aldosterone, the excess might be causing the pain! I base this in my experience, I had/have rt. flank pain. When all PA SXs were controlled with Spiro the pain went away. Now that I am off spiro the pain is back so I consider that an unscientific trial of one! If I wanted to put the question of PA to bed I would start with a valid ARR test. Do you have any numbers for renin? A ct-scan will not really tell you much unless one or both of your adrenals are enlarged! (If that is the case email me and I will have sugggestions!) Even if they see a tumor it really doesn't mean much unless it is large and there are other things they look at (highly unlikely). > > >> > > > >> > > I was posting here in late 2010, as I had been diagnosed with > > >> > > hyperaldosteronism. It appeared to be secondary aldosteronism > > >> caused > > >> > > by the prescription potassium supplement that I was taking. I was > > >> > > weaned off the potassium medication and with 2 months the > > >> > > hyperaldosteronism resolved and labs went back to normal. > > >> > > I have been having some weird symptoms again, and sure enough the > > >> > > high aldosterone is back. > > >> > > > > >> > > Here are the labs that were done: > > >> > > > > >> > > Sodium 139 (136-145) > > >> > > Potassium 3.8 (3.5-145) > > >> > > Chloride 103 (98-107) > > >> > > CO2 26 (21-32) > > >> > > Ion Gap 14 (10-18) > > >> > > BUN 10 (7-18) > > >> > > Creatinine .49 L (.51-.95) > > >> > > EST GFR >60 (>60) > > >> > > Glucose 92 (70-99) > > >> > > Calcium 7.7 L (8.5-10.1) > > >> > > Phosphorous 3.8 (2.5-4.9) > > >> > > Magnesium 1.9 (1.8-2.4) > > >> > > > > >> > > TSH <.005 L (.358-3.7) > > >> > > Free T3 3.70 (2.18-3.98) > > >> > > Free T4 .92 (.76-1.46) > > >> > > > > >> > > PTH <3 L (14-72) > > >> > > Vitamin D 49 (30-100) > > >> > > > > >> > > ACTH Hormone 19 (10-60) > > >> > > Cortisol AM 13.6 (4.3-22.4) > > >> > > Cortisol PM 3.4 (3.0-16.7) > > >> > > Aldosterone 25 H (<21) > > >> > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8) > > >> > > (NA replete, upright. Mean 1.0, <.6-3.0) > > >> > > > > >> > > Has anyone had hyperaldosteronism come and go like this? > > >> > > Since it seemed to resolve itself I never had a scan done for a > > >> > > tumor; now I'm wondering if it could be a tumor since it is > > >> back but > > >> > > I am no longer taking the medication that we assumed caused it. > > >> The > > >> > > last time I had aldosterone tested was January of 2011, so > > >> between > > >> > > then and now it hasn't been tested. I guess it's possible it > > >> could > > >> > > have been high in the meantime but I didn't know it and it wasn't > > >> > > being tested. I've felt pretty crappy but I have a lot of other > > >> > > medical conditions that I blame it on. > > >> > > Also---does anyone else here with high aldosterone have heat > > >> > > intolerance and red facial flushing(not rosacea)? > > >> > > > > >> > > Thank you, > > >> > > > > >> > > > > >> > > > > >> > > > >> > > > > > > > > >

[Guest guest]

Good. But if you want us to help we need the complete story too. Otherwise we have one hand behind our back.Thanks.The purpose of the urine albumin/creatinine is to see if you have ongoing kidney damage from HTN or anything else such as DM or even meds.Need normal values for renin and aldo in that lab, your sodium intake as estimated by a 24 hr urine for Na and K done on day bloods were done.What meds were you on at that time including any BCPs or estrogens?On May 4, 2012, at 5:03 PM, Dillon wrote: My thyroidectomy was a total thyroidectomy. The electrolyte imbalances began immediately after surgery. My thyroidectomy was in 2008. In 2007, I had a tonsillectomy that revealed stage 2/3 HPV+ tonsil cancer. I had three rounds of cisplatin, each three weeks apart. I also had 7 weeks of bilateral IMRT, 70gy, I believe. I had a feeding tube. I don't know what a spot urine albumin/creatinine test is. I have had frequent albumin and creatinine serum labs. While my eGFR has always been normal, I will check to see if it was 'steady'. I have endometriosis and ovarian cysts. I have severe environmental allergies. I have chronic low white blood cell counts(no reason found) I have macrocytic anemia of unknown origin. It was not caused by the chemotherapy, as it was already occuring before the chemo. I had an endometrial ablation in 2009. I have a history of sinusitis and migraines. I have a history of cervical cancer(1991). My aldosterone level was 25 My renin level was 1.4 My doctors are aware of my complete medical history. > > > >> > > > > >> > > I was posting here in late 2010, as I had been diagnosed with > > > >> > > hyperaldosteronism. It appeared to be secondary aldosteronism > > > >> caused > > > >> > > by the prescription potassium supplement that I was taking. > > I was > > > >> > > weaned off the potassium medication and with 2 months the > > > >> > > hyperaldosteronism resolved and labs went back to normal. > > > >> > > I have been having some weird symptoms again, and sure > > enough the > > > >> > > high aldosterone is back. > > > >> > > > > > >> > > Here are the labs that were done: > > > >> > > > > > >> > > Sodium 139 (136-145) > > > >> > > Potassium 3.8 (3.5-145) > > > >> > > Chloride 103 (98-107) > > > >> > > CO2 26 (21-32) > > > >> > > Ion Gap 14 (10-18) > > > >> > > BUN 10 (7-18) > > > >> > > Creatinine .49 L (.51-.95) > > > >> > > EST GFR >60 (>60) > > > >> > > Glucose 92 (70-99) > > > >> > > Calcium 7.7 L (8.5-10.1) > > > >> > > Phosphorous 3.8 (2.5-4.9) > > > >> > > Magnesium 1.9 (1.8-2.4) > > > >> > > > > > >> > > TSH <.005 L (.358-3.7) > > > >> > > Free T3 3.70 (2.18-3.98) > > > >> > > Free T4 .92 (.76-1.46) > > > >> > > > > > >> > > PTH <3 L (14-72) > > > >> > > Vitamin D 49 (30-100) > > > >> > > > > > >> > > ACTH Hormone 19 (10-60) > > > >> > > Cortisol AM 13.6 (4.3-22.4) > > > >> > > Cortisol PM 3.4 (3.0-16.7) > > > >> > > Aldosterone 25 H (<21) > > > >> > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8) > > > >> > > (NA replete, upright. Mean 1.0, <.6-3.0) > > > >> > > > > > >> > > Has anyone had hyperaldosteronism come and go like this? > > > >> > > Since it seemed to resolve itself I never had a scan done > > for a > > > >> > > tumor; now I'm wondering if it could be a tumor since it is > > > >> back but > > > >> > > I am no longer taking the medication that we assumed caused > > it. > > > >> The > > > >> > > last time I had aldosterone tested was January of 2011, so > > > >> between > > > >> > > then and now it hasn't been tested. I guess it's possible it > > > >> could > > > >> > > have been high in the meantime but I didn't know it and it > > wasn't > > > >> > > being tested. I've felt pretty crappy but I have a lot of > > other > > > >> > > medical conditions that I blame it on. > > > >> > > Also---does anyone else here with high aldosterone have heat > > > >> > > intolerance and red facial flushing(not rosacea)? > > > >> > > > > > >> > > Thank you, > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > >> > > > > > > > > > > > > > > > >

[Guest guest]

Yes she needs to order sodium and potassium and cortisol (if cortisol not done before) if your BMI is over 25 and catechoalmines if not already done but will need special jug for some of these depending on the labs. See below. Welcome to the exciting world of Hyperaldosteronism You are in the right place! I am Dr. CE Grim a retired (well semi-retired) Professor of Medicine and Endocrinology. I have had a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963 as a 4th year medical student. I did a Nephrology Fellowship at Duke and an Endocrinology and Metabolism Fellowship with Dr. Conn (1969-70). I have been on the faculty of the University of MO, Indiana Univ, UCLA/ R. Drew, and the Medical College of Wisconsin in Divisions of Nephrology, Endocrinology, Hypertension, Cardiology and Epidemiology. I have published over 240 papers and book chapters in most areas of the broad discipline of High Blood Pressure. My CV is in our files for details. The GOAL of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt and potassium and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you a doctor we will make you into a pretty good BP doctor-a skill that you will have for life. 1. Overview: Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, and low potassium (K). Be certain that you and your health care team understand the key role of excess diet salt in HTN and especially in PA. Without excess salt in the diet, aldosterone cannot do most of its damage. Go to: http://www.worldactiononsalt.com/evidence/treatment_trials.htm For a state of the art and science discussion of salt and health. 2. Conn's Stories. Other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. I trained with him and his team in Ann Arbor, MI in 1969-70. To see others' stories on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc "Then send us your story in an email and then we will likely ask more questions and make suggestions before you upload it to our files. 3. Hyperaldosteronism and Salt: The Deadly Duo. In oder for aldosterone to cause its damage one must also eat excess salt in the diet. Thus much of the damage can be controlled/reversed by lowering salt (sodium) intake and increasing potassium intake. This is the essence of the low sodium DASH eating plan. Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, read it and use it: $8 in paperback at your local bookstore. If they don’t have it ask them to order it for you. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. Go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds in only 2-3 days. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP and let your Dr. know you are doing this. Or go to (but costs money) DASH Diet for Health ProgramThe DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week we will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on our website, we create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise.http://www.dashforhealth.com/ I strongly recommend you get the book and read it now! 4. Measure your own BP and insist that your health care team always measures BP correctly with an recently calibrated device: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist the your health care team do BP the AHA way. Your life is in the hands of those who measure your BP. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. Most devices will read at least 25 mm Hg too high or too low is some people. The only way to know if you are one is to have your and any other automatic devices checked for accuracy in you. Instructions for doing this are in our files. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. There is a brief discussion of this in my Evolution Article. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day with the testing for Pheochromocytoma and Cushing's thrown in. 1. Eat a high salt diet for 2 weeks-at least 4000 mg of Na a day. 2. No BP meds in last 4-12 weeks depending on meds and Drs advice. 3. Collect accurate 24 hr urine for Na, K and creatinine, aldosterone, urinary free cortisol and catecholamines. See which ones your lab can do all in the same sample. Do not lose a drop of this liquid gold. It is impossible to interpret the plasma renin and aldosterone and urine aldosterone and cortisol without this information. 4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldosterone and K using our guidelines to get an accurate K. Try to get this done about 1-4 hours after you have been out of bed. Be sure the laboratory orders and does aldosterone NOT aldolase. 5. Send us the results with the normal values for your lab. 6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. I call this Dr. Grim’s “Quick Pee Test” for PA. 7. Our PA Registry: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 5/1/12 for me would be Grim120521. This way of writing the date is an ever increasing number and will allow us and you to sort your multiple entries into a dated order. We are working on a more extensive database. 8. Learn the language: If you are new to medical lingo then download the acroyms from bloodpressureline/message/291869. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm10. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor.11. Learn as much as you can about how High Blood Pressure should be diagnosed and managed: Go to nih.gov and download and read the latest Joint National Commission (JNC) Report to get an overview on current guidelines. I have always asked all my staff (including secretaries) to read this so they can communicate the importance of high blood pressure to my patients. Then: get (and study) the Hypertension Primer from americanheart.org. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned.12. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for.13. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your medical care team contract me directly at lowerbp2@.... My consulting fee is $500 for one year access to my expertise e-mail or by iChat or Skype or snail mail. May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FASH.Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. On May 5, 2012, at 12:39 PM, Dillon wrote: I just wanted to add to my last post from last night, my doctor has ordered a 24 hour urine test but has only ordered aldosterone and creatinine; are there other levels in the 24 hour urine that she should be checking besides aldo and creat? I wouldn't want to have to repeat the 24 hour test. In addition to the 24 hour urine, serum labs ordered are aldosterone, renin, magnesium and basic metabolic panel. Thanks, > > > > > > >> > > > > > > > >> > > I was posting here in late 2010, as I had been > > > diagnosed with > > > > > > >> > > hyperaldosteronism. It appeared to be secondary > > > aldosteronism > > > > > > >> caused > > > > > > >> > > by the prescription potassium supplement that I was > > > taking. > > > > > I was > > > > > > >> > > weaned off the potassium medication and with 2 months the > > > > > > >> > > hyperaldosteronism resolved and labs went back to normal. > > > > > > >> > > I have been having some weird symptoms again, and sure > > > > > enough the > > > > > > >> > > high aldosterone is back. > > > > > > >> > > > > > > > > >> > > Here are the labs that were done: > > > > > > >> > > > > > > > > >> > > Sodium 139 (136-145) > > > > > > >> > > Potassium 3.8 (3.5-145) > > > > > > >> > > Chloride 103 (98-107) > > > > > > >> > > CO2 26 (21-32) > > > > > > >> > > Ion Gap 14 (10-18) > > > > > > >> > > BUN 10 (7-18) > > > > > > >> > > Creatinine .49 L (.51-.95) > > > > > > >> > > EST GFR >60 (>60) > > > > > > >> > > Glucose 92 (70-99) > > > > > > >> > > Calcium 7.7 L (8.5-10.1) > > > > > > >> > > Phosphorous 3.8 (2.5-4.9) > > > > > > >> > > Magnesium 1.9 (1.8-2.4) > > > > > > >> > > > > > > > > >> > > TSH <.005 L (.358-3.7) > > > > > > >> > > Free T3 3.70 (2.18-3.98) > > > > > > >> > > Free T4 .92 (.76-1.46) > > > > > > >> > > > > > > > > >> > > PTH <3 L (14-72) > > > > > > >> > > Vitamin D 49 (30-100) > > > > > > >> > > > > > > > > >> > > ACTH Hormone 19 (10-60) > > > > > > >> > > Cortisol AM 13.6 (4.3-22.4) > > > > > > >> > > Cortisol PM 3.4 (3.0-16.7) > > > > > > >> > > Aldosterone 25 H (<21) > > > > > > >> > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8) > > > > > > >> > > (NA replete, upright. Mean 1.0, <.6-3.0) > > > > > > >> > > > > > > > > >> > > Has anyone had hyperaldosteronism come and go like this? > > > > > > >> > > Since it seemed to resolve itself I never had a scan done > > > > > for a > > > > > > >> > > tumor; now I'm wondering if it could be a tumor since > > > it is > > > > > > >> back but > > > > > > >> > > I am no longer taking the medication that we assumed > > > caused > > > > > it. > > > > > > >> The > > > > > > >> > > last time I had aldosterone tested was January of 2011, > > > so > > > > > > >> between > > > > > > >> > > then and now it hasn't been tested. I guess it's > > > possible it > > > > > > >> could > > > > > > >> > > have been high in the meantime but I didn't know it and > > > it > > > > > wasn't > > > > > > >> > > being tested. I've felt pretty crappy but I have a lot of > > > > > other > > > > > > >> > > medical conditions that I blame it on. > > > > > > >> > > Also---does anyone else here with high aldosterone have > > > heat > > > > > > >> > > intolerance and red facial flushing(not rosacea)? > > > > > > >> > > > > > > > > >> > > Thank you, > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

[Guest guest]

Thank you. She's probably not going to like me second guessing her about these

labs.

You had asked about my eGFR, which I responded to last night; I'm not sure if

you saw it. What is the significance of it rising? You had also asked if I was

on estrogen or BCP; do those cause high aldosterone?

I read what you included under your last post.

My doctors have never discussed sodium with me, and have never told me I need to

adjust sodium intake before testing. Is it common that doctors don't understand

the signifacance of sodium when dealing with potassium aldosterone issues? I

just want proper testing done and no retakes, but I hate to step on my doctors

toes.

> > > > > > > > >> >

> > > > > > > > >> > > I was posting here in late 2010, as I had been

> > > > > diagnosed with

> > > > > > > > >> > > hyperaldosteronism. It appeared to be secondary

> > > > > aldosteronism

> > > > > > > > >> caused

> > > > > > > > >> > > by the prescription potassium supplement that I was

> > > > > taking.

> > > > > > > I was

> > > > > > > > >> > > weaned off the potassium medication and with 2

> > months the

> > > > > > > > >> > > hyperaldosteronism resolved and labs went back to

> > normal.

> > > > > > > > >> > > I have been having some weird symptoms again, and

> > sure

> > > > > > > enough the

> > > > > > > > >> > > high aldosterone is back.

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

> > > > > > > > >> > > Here are the labs that were done:

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

> > > > > > > > >> > > Sodium 139 (136-145)

> > > > > > > > >> > > Potassium 3.8 (3.5-145)

> > > > > > > > >> > > Chloride 103 (98-107)

> > > > > > > > >> > > CO2 26 (21-32)

> > > > > > > > >> > > Ion Gap 14 (10-18)

> > > > > > > > >> > > BUN 10 (7-18)

> > > > > > > > >> > > Creatinine .49 L (.51-.95)

> > > > > > > > >> > > EST GFR >60 (>60)

> > > > > > > > >> > > Glucose 92 (70-99)

> > > > > > > > >> > > Calcium 7.7 L (8.5-10.1)

> > > > > > > > >> > > Phosphorous 3.8 (2.5-4.9)

> > > > > > > > >> > > Magnesium 1.9 (1.8-2.4)

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

> > > > > > > > >> > > TSH <.005 L (.358-3.7)

> > > > > > > > >> > > Free T3 3.70 (2.18-3.98)

> > > > > > > > >> > > Free T4 .92 (.76-1.46)

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

> > > > > > > > >> > > PTH <3 L (14-72)

> > > > > > > > >> > > Vitamin D 49 (30-100)

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

> > > > > > > > >> > > ACTH Hormone 19 (10-60)

> > > > > > > > >> > > Cortisol AM 13.6 (4.3-22.4)

> > > > > > > > >> > > Cortisol PM 3.4 (3.0-16.7)

> > > > > > > > >> > > Aldosterone 25 H (<21)

> > > > > > > > >> > > Renin 1.4 (NA deplete, upright. Mean 5.9, 2.9-10.8)

> > > > > > > > >> > > (NA replete, upright. Mean 1.0, <.6-3.0)

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

> > > > > > > > >> > > Has anyone had hyperaldosteronism come and go

> > like this?

> > > > > > > > >> > > Since it seemed to resolve itself I never had a

> > scan done

> > > > > > > for a

> > > > > > > > >> > > tumor; now I'm wondering if it could be a tumor

> > since

> > > > > it is

> > > > > > > > >> back but

> > > > > > > > >> > > I am no longer taking the medication that we

> > assumed

> > > > > caused

> > > > > > > it.

> > > > > > > > >> The

> > > > > > > > >> > > last time I had aldosterone tested was January of

> > 2011,

> > > > > so

> > > > > > > > >> between

> > > > > > > > >> > > then and now it hasn't been tested. I guess it's

> > > > > possible it

> > > > > > > > >> could

> > > > > > > > >> > > have been high in the meantime but I didn't know

> > it and

> > > > > it

> > > > > > > wasn't

> > > > > > > > >> > > being tested. I've felt pretty crappy but I have

> > a lot of

> > > > > > > other

> > > > > > > > >> > > medical conditions that I blame it on.

> > > > > > > > >> > > Also---does anyone else here with high

> > aldosterone have

> > > > > heat

> > > > > > > > >> > > intolerance and red facial flushing(not rosacea)?

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

> > > > > > > > >> > > Thank you,

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

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

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

> > > > > > > > >> >

> > > > > > > > >>

> > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > >

> > >

> >

> >

>