Re: New to group, 8 years CFS now Adrenal Insufficiency

November 13, 2008

Try support groups: s_Disease This group tends

to support lower HC dosage.

And NaturalThyroidHormonesADRENALS This second group is

much more active and supports higher dosages.

Best of everything; you've had a tough road but it is not an unfamiliar

story. Adrenal sufficiency takes much too long to diagnose, especially

if you also have CFS. Symptoms get pushed under the umbrella of CFS and

are ignored by endos and g.p.'s for much too long. Make sure to get

your thyroid panel tested, TSH, Free T4, Free T3.

New to group, 8 years CFS now Adrenal

Insufficiency

Hi all. I'm Chris. 30, male, from Melbourne, Australia.

November 13, 2008

hi chris - i don't tolerate cortef - do much better on long acting compounded

hydrocortisone...when i started off on corted5 mg twice a day i was soon a

basket case...the compounded stuff doesn't do numbers in my head!

good luck,

deb

November 13, 2008

Hi Chris

Sorry for what you are going through.

It seems that you think you developed Ai after cfs. I think it is a possibility

that what you had was originally AI and not CFS.

It is also possible that you developed AI IF you were given huge dose of

corticosteroids during or after your surgeries even you had CFs at the first

place.

another possibility is that you have suppressed your adrenals by large doses of

licorice.Or by abrubtly stopping licorice.

this is a very difficult situation and i hope you find a way out soon.

i am member of various addisonian lists and i learned from those lists that it

is very difficult to diagnose and treat addisons or secondary Ai all over the

world and it is generally diagnosed after having a crisis.

one such group is s_Disease . I highly suggest you to

post your note there. Some might be able to help.

" I was recently in hospital for 5 days and they found

nothing else wrong, and said " It must be just your CFS, you'll have

to just live with it and work out a routine. " - I HAD a routine

before this, now i simply cannot do anything! "

This simply is crazy..If you have secondary AI doctors need to find a way to

treat you properly.. You need to find a good endocrinologist.

It could be that you are also aldosterone deficient and you may need florinef.

Doctors should check you for that.It could be the reason why you are not feeling

better.I would again suggest you to find a good endocrinologist. meanwhile

please search the web. there are many supportive addisonian groups. They may

lead you on what to do,even to find a good doctor in your area.

hope you soon find a way out of this.

bw

nil

New to group, 8 years CFS now Adrenal

Insufficiency

Hi all. I'm Chris. 30, male, from Melbourne, Australia.

My history is long and complicated, and I very much appreciate

whoever reads this.

November 13, 2008

Chris

it could also be that you developed temporary adrenal insufficiency due to huge

doses of licorice use of due to abrupt stopping it.

so,your AI case may be reversible. I suggest you to be careful on this and make

a very careful investigation on it.If you have a chance to reverse it try not to

miss that chance. if you stay on corticosteroids for long time you may loose

your chance of reversing it. so, i think you need a good endocrinologist to

evaluate all these.

best wishes

nil

November 15, 2008

Thanks Nil.

Well, when i first was initially very sick with digestive trouble and

so on, and lost alot of weight, when in hospital they did the ACTH

stim test and that ruled out adrenal problems. So in the beggining, I

didnt have adrenal insufficiency. The CFS started around the same

time. I was able to manage for years, and was up and down. Seeing

that i actually got a bit better between 05-07 and was able to travel

on planes and buses, walk a bit as needed, i dont think i had AI or

at least it was not as severe back then. i don't think i could have

gone for 7 years with AI and no treatment, even if i was functioning

very suboptimally. Althought its possible that there has been a

degree of AI the whole time maybe a year or so into my probs.

As read by many of the top guys, CFS generally has HPA dysfunction, I

just think the degree is different in dff people.

I started getting severe AI symptoms at the end of last year, which

is what led me to get onto the licorice in the first place. It REALLY

helped the AI symptoms back then, but as stated it wore off over

months and I needed alot more. I wish i knew to have breaks in

between it, because yes it could have possibly contributed to the now

full blown AI.

I realise i *may* have a chance to recover my own adrenals,

especially if the current situation was perpetuated by licorice, but

i was so bad before starting HC that i can't imagine being able to

get off it in the near future. Im seeing an integrative prac, and

also a new one who's sposed to be even better next month, so

hopefully they might have some ideas. I tried alot of adrenal support

supps before going onto HC, including licorice, ginsengs, B complex,

B5 & 6, sea salt in water, etc. They were helping somewhat, but i was

still ending up in ER with BP crashes, so i guess supps just weren't

enough for my adrenals.

I was never given corticosteroids after surgery etc. The longest I

was ever on them was in my early CFS days for about 5 days at a time.

VERY few and far between trying it. Once i was on hydrocortisone for

about 4-5 days at only 5mg a day, and it had alot of benefit back

then as i had my own function still working. Another time

prednisolone for 5 days. Both times i felt absolutley HORRIBLE when i

came off it after the 5 days, like my glands had shut down straight

away. I am very sensitive to this, therefore I'm not sure if i'll be

able to come off this current treatment im on unless the rest of my

body gets really fixed up (heavy metals, parasites & other bugs, poor

liver function, etc).

Yeah, the current Endo's are ok.. but they don't see cases like mine

very often. They just gave me cortisone and said take 10mg twice a

day.. that is the extent they explained AI to me! o_O They said

nothing about stress dosing, emergency injections, anything! Crazy I

tell you. I find that very odd seeing as how serious the condition

is. I've had some very near crashes and had to stress dose hard

myself, just on feeling, and because i've read elsewhere thats what

we should do. I do need to find a better endo. It's just hard not

having much energy to go anywhere to try out new drs etc.

I had my aldosterone checked a few times, including my recent

hospital stay. They said it was 'normal' but i didnt get the lab

results. On my follow up i'm going to ask for copies of all the test

results. So apparently i don't need florinef at the moment. Yet I

still often have dropping BP (postural) and tachy on standing. Not

always, I've had some windows of feeling better from the HC, but I

wonder if florinef could help.. possibly allowing me to lower the

dose of HC. 40mg a day seems too much from what i've read, and i

simply can't function on 30mg. The guys on the hypopituitary_support

group often say that if you need more than 30mg HC to function,

then it's metabolising to fast or not being utilised well enough, and

may need to switch to medrol/prednisolone. Currently holisitc docs

dont really like that idea as pred is more synthetic, but it sure is

working for those guys, to feel more smoothed out and balanced

through the day.

Anyway, thanks again, ~Chris.

>

> Hi Chris

>

> Sorry for what you are going through.

>

> It seems that you think you developed Ai after cfs. I think it is a

possibility that what you had was originally AI and not CFS.

>

> It is also possible that you developed AI IF you were given huge

dose of corticosteroids during or after your surgeries even you had

CFs at the first place.

>

> another possibility is that you have suppressed your adrenals by

large doses of licorice.Or by abrubtly stopping licorice.

>

> this is a very difficult situation and i hope you find a way out

soon.

>

> i am member of various addisonian lists and i learned from those

lists that it is very difficult to diagnose and treat addisons or

secondary Ai all over the world and it is generally diagnosed after

having a crisis.

>

> one such group is s_Disease I highly

suggest you to post your note there. Some might be able to help.

>

> " I was recently in hospital for 5 days and they found

> nothing else wrong, and said " It must be just your CFS, you'll have

> to just live with it and work out a routine. " - I HAD a routine

> before this, now i simply cannot do anything! "

>

> This simply is crazy..If you have secondary AI doctors need to find

a way to treat you properly.. You need to find a good endocrinologist.

>

> It could be that you are also aldosterone deficient and you may

need florinef. Doctors should check you for that.It could be the

reason why you are not feeling better.I would again suggest you to

find a good endocrinologist. meanwhile please search the web. there

are many supportive addisonian groups. They may lead you on what to

do,even to find a good doctor in your area.

>

> hope you soon find a way out of this.

> bw

> nil

>

> New to group, 8 years CFS now

Adrenal Insufficiency

>

> Hi all. I'm Chris. 30, male, from Melbourne, Australia.

>

> My history is long and complicated, and I very much appreciate

> whoever reads this.

>

November 15, 2008

Thanks Deb. Ah interesting.. yeah i've heard reports from alot of

different people now with adrenal insufficiency. Some say the

compounded stuff is too weak and doesnt kick in enough in their system

or is inconsistent.. others say it works for them.

Personally, i've ordered 10mg SR HC caps from a compounding pharmacist,

found one with a good price, and hopefully they will be here this week

for me to try out.

Do you feel more even during the day on the compounded stuff? Also what

dose are you taking of it now?

As im on 40mg cortef a day at the moment, i hope to be able to reduce

it with the SR if it works for me. Hoping it's more even requiring less

dosing. Want to at least get it to 30mg a day if possible.

Thanks. ~Chris.

>

> hi chris - i don't tolerate cortef - do much better on long acting

compounded hydrocortisone...when i started off on corted5 mg twice a

day i was soon a basket case...the compounded stuff doesn't do numbers

in my head!

> good luck,

> deb

November 17, 2008

Hi Deb. I see! That's a very low dose. If you can manage on 15mg a

day thats lucky in my opinion.

So do you mean your SR caps are 2.5mg each?

This is for Nil aswell:

I am going to be getting 10mg caps, and hoping to take 5mg HC

(Cortef) with a 10mg cap HC SR in the morning, and see how long the

SR lasts. Then hopefully just another 5mg cortef + another 10mg SR

around midday / 1pm, and will see if that lasts the day. I'm hopeful,

but as suggested by others including Nil above, if i'm not absorbing

HC well enough because of my digestion, the compounded HC might be

too weak for me. I'd like to get my levels checked while i'm on 40mg

of HC a day and see if they are too high as most people would think,

or if normal / still low. Will be interesting to see and may be an

indicator of the dosing I really need.

Deb: Im using a compounding pharmacy up the coast here in Australia..

I don't think you're over here right? Probably wouldn't be beneficial

for you to get it from here. I'll be paying $30 for 100 capsules,

which is probably about $23US.

Yes I have dr s book, it's excellent and i'm currently re-

reading it.

~Chris

>

> hi chris - i take 2.5 mg 3x a day - tried half a tab of cortef 5

mg the other day and it still did a number on my brain....maybe a bit

more even....still don't do mornings...

> what compounding pharmacy are you using? - i find the stuff really

expensive. i may get some reg hydrocortisone from a compounding phar

to use in conjuction with the sr...

> good luck,

> deb

> ps do read wilson's book if you haven't already...

November 17, 2008