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lori_r wrote:

>Thanks, Caroline,

>

>This helps support my efforts to change my life.

>

>by the way, what are the numbers that you and others put below your name?

>

> 304/282/180

>

The first one is my upper weight, the weight I had when I started

program (I started on 4/26 of this year), the middle one is my current

weight (as of today), and the third is my goal weight.

--

----

http://www.geocities.com/carolineatigeress

----

May you find peace within, that it may radiate by your actions without.

Pagan Proverb

---

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Thank you,

Re: Introduction

lori_r wrote:

>Thanks, Caroline,

>

>This helps support my efforts to change my life.

>

>by the way, what are the numbers that you and others put below your name?

>

> 304/282/180

>

The first one is my upper weight, the weight I had when I started

program (I started on 4/26 of this year), the middle one is my current

weight (as of today), and the third is my goal weight.

--

----

http://www.geocities.com/carolineatigeress

----

May you find peace within, that it may radiate by your actions without.

Pagan Proverb

---

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  • 2 months later...

Hi Amy,

Welcome to our group! You do have your hands full with your work, and

homeschooling and running a family don't you? I am really glad you found us

though. A great place to start of is reading through <A

HREF= " www.igan.ca " >www.igan.ca</A> That is our

sister site, and it has tons of information from a patient's perspective. Feel

free to post any specific questions you may have at any time too.

I am very glad you are tolerating the steroids well. I tried them a couple

of years ago, and I did not fair so well and was quickly weaned off of them

within a couple of months. As your doctor may have told you, having crescents

is

not a good indicator as far as prognosis goes.

I am not a vegetarian, so I can't help you out on the dietary question, but I

am glad to hear your doctor referred you to a dietitian. I went to one when

I had to go on a low protein, low potassium diet, and it really helped me. I

hope yours is as helpful to you.

By the way, I liked your quote at the end of your email. Truly this group is

a family bonded by respect and caring for one another. We do rejoice in good

news, and share the sorrow when one of our members receives less than

desirable news.

Welcome to our kidney family!

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Welcome to the group Amy.

I was in a similar situation, as I was mostly a vegetarian all my life,

although I did eat cheese, eggs and the occasional meat dish. I wouldn't

drink milk if my life depended on it. When my nephrologist at the time first

prescribed a lower protein diet (when I still had normal kidney function),

and after the renal dietician explained it to me, I found I was actually

eating less protein than the low protein diet they were putting me on. So

much for the idea that a low protein diet early in IgAN prevents progression

of the disease.

Later on, when I reached 30% kidney function, they started me on an actual,

pre-dialysis low protein diet, but I found I still had to work to get my

daily 3 ounce requirement, since I didn't like to eat meat. One egg is

equivalent to one ounce of meat, and one tablespoon of peanut butter is

equivalent to one ounce of meat. Eggs are probably the single best source of

protein, and they aren't really limited in the renal diet, up to your

protein limit. So, with one or two eggs in the morning, you've already got

1/3 or 2/3 of your protein requirement for the day. Add in a peanut butter

and jam sandwich for lunch and you're getting pretty close to what you need.

Tofu, as I'm sure you know, can be substituted for meat in many dishes. If I

remember correctly, 1/3 of a cup of tofu has the same protein value as 1

ounce of meat. As long as you don't cook the tofu in soy, it should be Ok.

Keep in mind that there are no absolutes in terms of amounts or

restrictions. As time goes by, you will be able to experiment a little with

the amounts, and then see what it does to your blood work. The overidding

concern should be about potassium and phosphorus, and getting at least the

prescribed amount of protein every day. Potassium can be deadly immediately,

and phosphorus can affect your bones in the longer term. Sodium affects how

much fluid you retain, and consequently your blood pressure. Once you get to

dialysis, if you ever do without getting a transplant first, the protein

requirement increases dramatically (mine doubled from 3 ounces of meat or

equivalent on the pre-dialysis diet, to 6 ounces on the dialysis diet).

That's when it will really be challenge to remain a vegan - but it can be

done, although perhaps not without the use of a protein powder supplement.

If necessary, you can also use protein powder in your current pre-dialysis

diet, but it's not cheap, and it isn't covered by most drug plans. I'm sure

your dietician can " prescribe " one for you, if it's needed. The albumin

level in your blood work will tell if you are or aren't getting enough

protein.

With advanced renal failure as you appear to have, the trick is going to be

getting adequate high-value protein (even though it's a low protein diet),

without getting too much potassium or phosphorus in the process. You get the

most protein value with the least potassium and phosphorus overhead with

meat. I don't think there's any doubt about that. However, for the purpose

of a renal diet, eggs are equivalent to meat, as are tofu and peanut butter.

The major limitation is going to be legumes, which you won't be able to eat

in high enough quantities to provide the protein you need, without getting

too much of the other stuff. That doesn't necessarily mean you can never

have legume dishes, but it's going to be limited. Even though it's a low

protein diet, there is a lower limit, and if you don't meet it, you can be

pretty sure that you will become malnourished. Being malnourished by the

time you start dialysis is not a good idea, because studies have shown a

much higher degree of morbidity.

Another potential problem is going to be hemoglobin. You will almost

certainly eventually be on EPO, as your hemoglobin drops. EPO (such as

Procrit, Eprex, Aranesp) needs adequate body stores of vitamin B12 and iron

(ferritin) in order to work. Those levels have to be up before starting the

EPO. These can be a problem for vegetarians in advanced renal failure, and

it's almost impossible to achieve without some supplementation. So, you

should probably be on renal vitamins, and eventually, you might need iron.

Even meat eaters need these at some point.

Your dietician probably has told you all this already, but it never hurts to

post about it. Others who read this may be helped as well.

Good luck. Let's hope you can stave off dialysis for a long time still. The

low protein renal diet didn't really do me much good, as I started dialysis

a year after starting on it. However, one thing it does, even if it doesn't

delay the need for dialysis, is it makes you feel significantly better until

you get there, and it keeps you safe from potassium overload. It also helps

keep you bones in good health. By limiting what you eat appropriately, you

are sort of doing your own dialysis by not putting things in that your

kidneys can't take out fast enough. It's safe to say that without a proper

renal diet, most kidney patients approaching kidney failure experience more

" uremic " symptoms. There is a list of these on my website: www.igan.ca .

Look in the " Renal Failure Notebook " . The flip side is that if you don't get

enough protein, you make your situation much worse than it has to be.

Pierre

Introduction

> Hi,

> I'm new to the group and newly diagnosed with IgAN. I hope to gain

some insight and support thru you all...seems the more I read up the more I

could use some support! Ack!

> My name is Amy, I'm a 34yr old married, self-employed seamstress,

homeschooling, mom of 2. (Like I don't have enough to think about in the day

now this!) I'm also vegetarian, near vegan (I still eat eggs but don't use

dairy products). I would love to get some dietary ideas from any other

vegan/vegetarians in the group. Eating low protein for me isn't a problem,

eating the right proteins is. I'm working with a renal dietician who at

least has a clue what it means to be vegan but some first hand experience

from those out there would be great!

> My condition is advanced and was diagnosed just a month ago. They

figure I've got about 25% function left with lots of crescentic scarring

already. I've gone thru 3 Solumedrol 1000mg IV treatments. I'm now on a

course of Prednisone and seem to be tolerating it well so far. It's also

showing good results up to this point and they just dropped my dose from

80mg to 60mg.

>

> That's about all for now, I hear my kids waking up. :) Looking forward

to getting to know you all.

> Amy

>

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Amy,

Welcome to our little family here. I loved your inspiration from "

Bach " . Very well said and very true.

I'm sure that you must feel a little overwhelmed right now at what has been

thrown your way. Keep in mind that many times the Neph, give you the worst

possible scenario as a way of preparing you because unfortunately upon the

initial diagnosis (even with scaring) they don't know how fast the IgAN may

progress for you personally. I have known about my IgAN for over 20 years,

three years ago when I had my biopsy, they told me that I would be on

dialysis within that year. As of this date, (knock on wood, and all of you

know why in my case) I'm not on dialysis. I have only declined from 26 to

22 kidney function over the last 3 years. So you see there is always

hope....

Also, I see that you are under a prednisone treatment, was your protein

spill high also? I'm also glad that you seem to be tolerating it well.

Keep us posted on what is going on with you and jump in at any time, we

welcome all to join in the conversations!

Connie

Co-Moderator, USA

Introduction

Hi,

I'm new to the group and newly diagnosed with IgAN. I hope to gain

some insight and support thru you all...seems the more I read up the more I

could use some support! Ack!

My name is Amy, I'm a 34yr old married, self-employed seamstress,

homeschooling, mom of 2. (Like I don't have enough to think about in the day

now this!) I'm also vegetarian, near vegan (I still eat eggs but don't use

dairy products). I would love to get some dietary ideas from any other

vegan/vegetarians in the group. Eating low protein for me isn't a problem,

eating the right proteins is. I'm working with a renal dietician who at

least has a clue what it means to be vegan but some first hand experience

from those out there would be great!

My condition is advanced and was diagnosed just a month ago. They

figure I've got about 25% function left with lots of crescentic scarring

already. I've gone thru 3 Solumedrol 1000mg IV treatments. I'm now on a

course of Prednisone and seem to be tolerating it well so far. It's also

showing good results up to this point and they just dropped my dose from

80mg to 60mg.

That's about all for now, I hear my kids waking up. :) Looking forward

to getting to know you all.

Amy

" The bond that links your true family is not one of blood, but of

respect and joy in each others life. Rarely do members of one family

grow up under the same roof. "

Bach from " Illusions "

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Hi Amy,

I just wanted to pop in and say welcome to the group. Although you sound

very calm, it must be extremely scarry to have two small kids at home and be

newly diagnosed with an advanced chronic disease. My heart goes out to you

for having to go through this at this time in your life. I hope you find

this list as helpful as I have. My son (who is nowhere's as advanced as

you) also did 1000 mg solumedrol IVs (he did six of them). Like you, he

tolerated it well. You mentioned it's showing good results. Can you be a

little more specific? I'm curious how your lab results changed.

responded very, very well, but I'm love to learn how someone who's disease

is as far advanced as yours might respond.

I'm amazed you found a renal dietician who has a clue about vegan stuff.

Most of the stuff I've read indicates you should concentrate on " high

quality protein " , but fails to define " high quality protein " .

BTW, " self employed seamstress " jumped out at me. I used to take in mending

(now that's an antiquated phrase) and did tailoring for others when I was in

law school. I think it's caught up with me however, because the local paper

is doing a big spread next week on the halloween costumes I make. I'll

share it with the group when the newpaper article comes out next week.

I look forward to hearing more from you. Please don't hesitate about

jumping in!

Cy

Introduction

> Hi,

> I'm new to the group and newly diagnosed with IgAN. I hope to gain

some insight and support thru you all...seems the more I read up the more I

could use some support! Ack!

> My name is Amy, I'm a 34yr old married, self-employed seamstress,

homeschooling, mom of 2. (Like I don't have enough to think about in the day

now this!) I'm also vegetarian, near vegan (I still eat eggs but don't use

dairy products). I would love to get some dietary ideas from any other

vegan/vegetarians in the group. Eating low protein for me isn't a problem,

eating the right proteins is. I'm working with a renal dietician who at

least has a clue what it means to be vegan but some first hand experience

from those out there would be great!

> My condition is advanced and was diagnosed just a month ago. They

figure I've got about 25% function left with lots of crescentic scarring

already. I've gone thru 3 Solumedrol 1000mg IV treatments. I'm now on a

course of Prednisone and seem to be tolerating it well so far. It's also

showing good results up to this point and they just dropped my dose from

80mg to 60mg.

>

> That's about all for now, I hear my kids waking up. :) Looking forward

to getting to know you all.

> Amy

>

> " The bond that links your true family is not one of blood, but of

> respect and joy in each others life. Rarely do members of one family

> grow up under the same roof. "

> Bach from " Illusions "

>

>

>

>

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Thanks Pierre! Lots of great info in there for me. :)

Part of the reason I pushed for a dieticain now rather than later (my

doctor normally doesn't schedule one until dialysis is started) was

due to trying to figure out the right proteins to eat. She's been a

great help so far and I'm finding I really don't have to make many

changes to my current diet at all. I've had to drop most of my bean

based dishes but between tofu, eggs, almond cheese, soy milk, peanut

butter, and a few low sodium meat analogs I'm finding enough to eat.

Peanut butter pasta is a favorite around here.

I've been on a B vitamin suppliment since becoming vegetarian 6 years

ago. The up side of reading up on the diet you are about to switch

over to is you can avoid deficiency from the start. The doctors

aren't too worried about my B-12 levels due to that fact. My iron

levels seem to be fine right now too but they will be watching them.

Thanks again for the great info...it gave me more to think about.

Amy

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Thanks for the Hello everyone!

Cy you hit it on the head " Although you sound very calm, it must be

extremely scarry to have two small kids at home and be newly

diagnosed with an advanced chronic disease. "

I go between feeling like I CAN do this, to total breakdown about not

wanting to die. It's been bad but I think part of it was a severe

reaction to the diuretic they put me on. Now off the diuretic my

head is much clearer and I'm just living for the day, with IgAN. I

have my moments of pure depression but my husband is supportive and

outwardly optomistic. He has been my pilar of strength thru this so

far. My kids know all about IgAN now and they come to my

appointments with me. My daughter turns caregiver when she notices

mom holding her back while cooking or cleaning....then she makes me

sit down and either finishes what I was doing or makes me take a

rest. :)

" You mentioned it's showing good results. Can you be a little more

specific? I'm curious how your lab results changed. "

My initial lab work shows a 2.3 serum creatinine and my protein spill

was at +3. 2 weeks into IV and Prednisone treatments and my protien

spill is at a +1! The doctor didn't expect it to drop that quick.

My serum creatinine level was also at a 2.0 so it's come down a bit

on top of it all. I don't have my other results in front of

me...forgot to get copies from the doctor. From my blood work they

figured I had much more function left, but when the biopsy came back

with: " From 20-25 glomeruli identified 16-19 are totally globally

sclerotic with many of these showing old fibrous crescents. " and " Up

to 80% of the glomeruli are totally globally sclerotic. The other

glomeruli have increased mesangial matrix, increased cellularity, and

verying degrees of sclerosis with fibrocellular crescents noted. "

They changed their minds about how advanced I am.

Can anyone tell me what the catagory thing means in the biopsy

report? It lists " Best catagroized as Class V diffuse sclerosing

glomerulonephritis in teh WHO classification. " How bad is bad I

guess??

" BTW, " self employed seamstress " jumped out at me. "

Be careful about those newspaper advertisements! I was slammed with

equestrians after my work ran in a magazine. I used to custom design

wedding gowns, formal wear, and equestrian show clothes. After my

kids came into the picture I switched to custom designing doll

clothes and haven't turned back. I sew for the American Girl and My

Twinn dolls doing period correct outfits for them. It's the most fun

I've had sewing in years! I also quilt, cross stitch and

garden ...though you wouldn't know it by looking at my yard this

year. The weeds took over while I got my health under control...I

guess I have to look forward to Spring now.

I'd like to say thanks for the existence of this group...I've been

feeling very alone and it helps to know I'm not.

Amy

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Hi Amy,

You described perfectly that range of emotions most of us go through. I

think you're going through every parent's worst nightmare. I know the only

thing that eclipses my fear about something happening to my son is something

happening to me so I can't take care of him. Kidney disease is not for the

weak of heart! How old are your kids? Your daughter sounds like a real

sweetie.

I can't immediately put my finger on the link to the WHO classifications.

If it turns up, I'll pass it on. It's a fairly primitive staging scale

ranging from stage I to stage V, with V being associated with renal failure.

Thanks for quoting your biopsy report. That must have been frightening to

read. It's funny: of all the pounds of lab reports, journal articles, etc

that clutter my desk, there is only one that catches my throat and grabs my

heart is the biopsy report. A year later, the horror hasn't stopped.... and

his report was no where's as extreme as yours.

As you've already figured out, the bottom line is CAN do this. One of my

kidney sages is a young Indian microbiologist who is worried about not

getting into medical school because his college GPA wavered a bit the year

he had his transplant. We'd been out of touch for a bit when I got a post

from him asking " how's ? Remitted? Cured? Renal failure? If so,

you know the drill! " . The breezy way he said " you know the drill " is

something that comes back to me every day. I think it's a matter of

reaching back to when you were that age - and " knew the drill " . You have

come very much to the right place because there's always folks who have gone

what you are going through now. I'd like to think our collective wisdom

exceeds that of any of us.

Your sewing career impresses me! You do the stuff I've only dreamed of.

For the most part, I did real nickel-and-dime pieces that I could tote

around and work on during school. Back when was small, I used to

work with a woman who also did made to order stuff with embellishments that

simply blew my mind. I got a kick when you mentioned sewing for

equestrians, because I'd been thinking of doing something along the same

lines.... horse blankets (see the difference in our skills?!) You're the

person I should turn to when it comes to 's show jacket. Those darn

things are pricy!

Cy

Re: Introduction

> Thanks for the Hello everyone!

> Cy you hit it on the head " Although you sound very calm, it must be

> extremely scarry to have two small kids at home and be newly

> diagnosed with an advanced chronic disease. "

> I go between feeling like I CAN do this, to total breakdown about not

> wanting to die. It's been bad but I think part of it was a severe

> reaction to the diuretic they put me on. Now off the diuretic my

> head is much clearer and I'm just living for the day, with IgAN. I

> have my moments of pure depression but my husband is supportive and

> outwardly optomistic. He has been my pilar of strength thru this so

> far. My kids know all about IgAN now and they come to my

> appointments with me. My daughter turns caregiver when she notices

> mom holding her back while cooking or cleaning....then she makes me

> sit down and either finishes what I was doing or makes me take a

> rest. :)

>

> " You mentioned it's showing good results. Can you be a little more

> specific? I'm curious how your lab results changed. "

> My initial lab work shows a 2.3 serum creatinine and my protein spill

> was at +3. 2 weeks into IV and Prednisone treatments and my protien

> spill is at a +1! The doctor didn't expect it to drop that quick.

> My serum creatinine level was also at a 2.0 so it's come down a bit

> on top of it all. I don't have my other results in front of

> me...forgot to get copies from the doctor. From my blood work they

> figured I had much more function left, but when the biopsy came back

> with: " From 20-25 glomeruli identified 16-19 are totally globally

> sclerotic with many of these showing old fibrous crescents. " and " Up

> to 80% of the glomeruli are totally globally sclerotic. The other

> glomeruli have increased mesangial matrix, increased cellularity, and

> verying degrees of sclerosis with fibrocellular crescents noted. "

> They changed their minds about how advanced I am.

> Can anyone tell me what the catagory thing means in the biopsy

> report? It lists " Best catagroized as Class V diffuse sclerosing

> glomerulonephritis in teh WHO classification. " How bad is bad I

> guess??

>

> " BTW, " self employed seamstress " jumped out at me. "

>

> Be careful about those newspaper advertisements! I was slammed with

> equestrians after my work ran in a magazine. I used to custom design

> wedding gowns, formal wear, and equestrian show clothes. After my

> kids came into the picture I switched to custom designing doll

> clothes and haven't turned back. I sew for the American Girl and My

> Twinn dolls doing period correct outfits for them. It's the most fun

> I've had sewing in years! I also quilt, cross stitch and

> garden ...though you wouldn't know it by looking at my yard this

> year. The weeds took over while I got my health under control...I

> guess I have to look forward to Spring now.

>

> I'd like to say thanks for the existence of this group...I've been

> feeling very alone and it helps to know I'm not.

> Amy

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

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Amy,

Just thought I would say hello. I enjoyed reading your post. What an

interesting job you have.

I have to concur with you on the yard work though. When I am not feeling

well the first place it shows is in the yard. It goes from being the best kept

to the most neglected in the neighborhood. I have to say I am feeling pretty

smug right now. It is nicely manicured. I also have my spring bulbs tucked in

for the winter and am cruising the seed catalogs already.

Here is a helpful hint from a fellow gardener --I put alot of effort into the

flower garden outside my bedroom window - that way when I am laid up I can

still enjoy the flowers. I even put a bird bath in.

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  • 1 year later...
  • 2 years later...

Hi June

Mo here, nice to see you again.

Sorry to hear you have been going through 'the hoops of fire' again, oh

yes.......... what a delight these doctors can be.

It probably would be a help to post your results though it does sound like

you are in need of h/c, would you agree?

Mo

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So why are we recommended to take Nutri Adrenal Extra if they make

little difference then?

I suppose it is a good first step if the adrenals are not too bad June.

And there is this fear of h/c isn't there.

I started on the glandulars and when they made no difference I went on the

h.c. No regrets.

Mo

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Please post your labs with ranges. We DO belkieve in the valididty of

saliva testing. Teh AMOUNT of the synthetic ACTh that is given in an

ACTH Stim test is so muich as yto invalidate a normal response as your

own body would NEVER make that much ACTh. Unless oyu have Addisoon;s it

will not diosclose the weak adrenals.

--

Artistic Grooming- Hurricane WV

http://www.stopthethyroidmadness.com/

http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/

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Hi there...the only Mo I know/knew was on the TPA Group...is that you

Mo? If it is it's good to hear from you again.....

I'm not sure about strating on HC Mo - that's why I asked the Gp to do a

Synacthen test and I get the actual reaylts from that on the 24th of

this month. All I know is that the surgery called to say it was normal.

When I told the GP about the NPTech results they really poo poo'd the

salivery corisol tests! That's why I am in such a quandry.

I will post the results as an attachment for everyone to see because I

can copy them to a pdf doc that way....

Additionally - sorry this is so long! - I stopped taking my 4 daily NAE

over a week ago and so far haven't noticed any real difference yet? By

the way - I am post menopausal, aged 57

Regards June x Just realised I can't attach a document?

>

> Hi June

> Mo here, nice to see you again.

> Sorry to hear you have been going through 'the hoops of fire' again,

oh

> yes.......... what a delight these doctors can be.

> It probably would be a help to post your results though it does sound

like

> you are in need of h/c, would you agree?

>

> Mo

>

>

>

>

>

>

>

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Hi again Mo - Great!

So why are we recommended to take Nutri Adrenal Extra if they make

little difference then?

June

>

> I stopped taking my 4 daily NAE

> over a week ago and so far haven't noticed any real difference yet?

>

> Goes to show how little they do June? Yes 'tis I, lol!

>

> mO

>

>

>

>

>

>

>

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Hi June

Rod here from the TPA group as well.

As I understand it, the NAE can speed up the healing process, and also

try and get the adrenals to produce natural cortisone without

over-stimulating them and damaging them.

Dr Peatfield recommended me to up my intake from 2 to 4 a day, and

I've found that I've had to reduce my first dosage from 10 to 7.5 as

it was too much otherwise. I've actually been trying to try and find a

comparison between HC and the NAE so that I can try and get a balance,

but maybe it depends on the strength of the individuals adrenals in

the first place.

Rod

>

> Hi again Mo - Great!

>

> So why are we recommended to take Nutri Adrenal Extra if they make

> little difference then?

>

> June

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Hello Rod

Apologies for the length of time it has taken for me to reply to your

post! I was taking 4 NAE for over 18 months and decided to stop as I

began to feel quite unwell on them. After posting my cortisol labe

results on here, and gettting the info I need to amke a decision. I have

now decided to start on Isocort first. Hopefully I will be able to judge

if this is going to be enough cortisol for me before having to go onto

HC....

I am loathe to muck around too much at the start with various

meds/supplements as I want to be able to record any changes and know

what to put any change down to as well - if you follow my drift LOL, but

will keep your protocol in mind for later on though....

Regards June

>

> Hi June

>

> Rod here from the TPA group as well.

> As I understand it, the NAE can speed up the healing process, and also

> try and get the adrenals to produce natural cortisone without

> over-stimulating them and damaging them.

> Dr Peatfield recommended me to up my intake from 2 to 4 a day, and

> I've found that I've had to reduce my first dosage from 10 to 7.5 as

> it was too much otherwise. I've actually been trying to try and find a

> comparison between HC and the NAE so that I can try and get a balance,

> but maybe it depends on the strength of the individuals adrenals in

> the first place.

>

> Rod

>

> >

> > Hi again Mo - Great!

> >

> > So why are we recommended to take Nutri Adrenal Extra if they make

> > little difference then?

> >

> > June

>

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