Re: Re: Hydrocortisone concerns...? ..

[Guest guest]

Hi

I started Cortef at a low dose (2.5mg a day) and increased slowly until

I got up to 27.5mg a day. I stayed on that dose for many months--I

don't recall exactly how many. Then I tapered off slowly--at about the

same rate as I had ramped up. If memory serves, I took about two months

to ramp up and about two months to taper off.

I had decided to treat my adrenal problems in the hope that it would

help the longstanding CFS symptoms (I have had CFS since 1987 and I went

on Cortef in 2004. While the cortef helped my adrenal problems (which

now test within normal levels) and did help some problems which I

believe were being caused by the adrenal problems (flushing, sudden

feelings of faintness and panic, night sweats), it did nothing, as far

as I can tell, to help the many varied problems caused by CFS. My hope

was that if I got the adrenals working all right that other parts of the

puzzle would get better. That does not seem to be the case.

Best,

wrote:

>

> Very interesting .

>

> I am always interested in hearing about people who have used HC for

> as long as you - anywhere over a month or more and been able to taper

> off, especailly after a year. I read so often that this is extremely

> rare to be able to do. I guess if one addressed the rest of their

> issues properly and got on top of it all, there would be more chance

> of getting the HPA back online.

>

> How much were you taking for that year, and how long did you take to

> wean off?

>

> Also, you say it helped 'get rid of' your problems.. you mean CFS?

> What else? Let us know.

>

> ~Chris.

>

>

> >

> > I used hydrocortisone (in the form of Cortef) for a year or so

> under a physician's care, in treating my adrenal problems, then I

> tapered off. I tried all kinds of other things first, but the HC is

> what helped me get rid of my problems.

> >

> >

>

>

[Guest guest]

You're right, 'what a normal person produces daily'. But not being a

normal person and having almost a total adrenal insufficiency, plus a

positive for Lupus and kidney and other auto-immune problems makes

that I need to take more than what a 'normal person' would take. I

have to keep auto-immune reactions in check and need to make sure I

can function on a minimal level.

I posted dr. Myhill's study because not everyone has such extremes as

I have and for most it will be sufficient what she recommends, it's

just not enough for me personally.

--

On Dec 22, 2008, at 12:10 PM, cbwillis9 wrote:

> The amount of h/c used in the study was 5-10 mg.

> This is the classic amount *after which* some degree of

> suppression begins to take place in a dose dependent manner,

> i.e. at more than 10 mg.

>

> 20 mg h/c is considered a physiologic amount

> (what a normal person produces daily).

>

> Many people taking h/c to support adrenal function are

> taking 15-40+ mg h/c.

[Guest guest]

Hi

Thanks for thsi note.I am also on hormone replacement therapy so i am very

much interested in your experience. have couple of questions if you don't mind.

" I started Cortef at a low dose (2.5mg a day) and increased slowly until

I got up to 27.5mg a day. I stayed on that dose for many months--I

don't recall exactly how many. Then I tapered off slowly--at about the

same rate as I had ramped up. If memory serves, I took about two months

to ramp up and about two months to taper off. "

Did you have saliva test done before starting cortef?or what was your

exhaustion level? How did you decide to stop it? According to the improvement at

your illness level or saliva testing?I am quite surprised that you were able to

stop it?Many people including myself have difficulty to do that.

" I had decided to treat my adrenal problems in the hope that it would

help the longstanding CFS symptoms (I have had CFS since 1987 and I went

on Cortef in 2004. While the cortef helped my adrenal problems (which

now test within normal levels) and did help some problems which I

believe were being caused by the adrenal problems (flushing, sudden

feelings of faintness and panic, night sweats),`

"

Main adrenal issue is exhaustion?Did cortef not help on this? Actually panic

and night sweats are signs of high cortsiol which occurs at earlier stages of

adrenal fatigue?And i am really not sure if 27.5 mg cortef is needed at this

stage.Did you treat yourself or were you under care of experienced

practitioner?

" it did nothing, as far

as I can tell, to help the many varied problems caused by CFS. My hope

was that if I got the adrenals working all right that other parts of the

puzzle would get better. That does not seem to be the case. "

Were you treated for thyroids?

In overall would you think you got worse after cortef therapy or better. 2

years is not a short time it must have had some kind of impact.

thanks a lot

nil

[Guest guest]

Hi Nil,

I hope my experience may be helpful to you. I had been having adrenal

problems for quite sometime. I recall that saliva tests by Dr. Cheney

in 1996 revealed adrenal problems, and Dr. Cheney recommended natural

supplements (vit C, salt) to help it. I was also testing very low

sodium at the time, so Dr. Cheney actually prescribed salt tablets. But

then my other CFS problems became so severe that Dr. Cheney and I

focused on other problems, although I continued the vitamin C and sea

salt (the salt tablets disagreed with me, but the sea salt worked okay).

In 2004, I was searching for what I could do that might help the CFS. I

discovered via 4xa day saliva test through canary club dot com from

Diagnostechs that there were several problems with my cortisol levels.

I sought out a doctor who specialized in adrenal and thyroid problems,

and worked with her. When she recommended cortef, I was hesitant to

start because I had heard all the usual horror stories. I found a

wonderful list on health lists which had a moderator who knows

more about adrenals than any doctor I've ever met (although she is not a

doctor and does not give medical advice). I read that list for a while

and asked some questions, and I learned a lot. (The list I read is

NaturalThyroidHormoneHormonesADRENALS

The moderator is .)

After reading the messages from many, many people who had good success

taking cortef or other forms of hydrocortisone, I felt more secure. I

started taking it using 's recommended ramp-up schedule, with

small differences recommended by my doctor.

I was really surprised how much it helped me. The main thing I remember

is that prior to the cortef, whenever I was in a stressful conversation

or a stressful situation, I would turn pale and my whole body would

start to shake. The cortef quickly stopped that. I also experienced

(for a while) better sleep, headaches going away, some relief from body

aches and muscle spasms going away. I ramped up to 27.5mg a day and

felt better. My doctor recommended that I continue to increase. I went

up to 30mg a day and I had high cortisol symptoms, which I recognized

easily because they were different from my low cortisol symptoms (I

understand that for some people, they are the same, but mine were

different). So I dropped back to 27.5 and stayed there for months

because my doctor advised me that it was necessary in order to stabilize

my adrenal production. After approx. 8-9 months, she thought, based on

symptoms, that my adrenals were stabilized and I began to taper off

slowly, at the rate of about 2.5mg every week or two weeks, depending on

symptoms. If I started getting low cortisol symptoms, I stayed at the

same dose or raised to the the prior level and waited a week or two

before making a reduction in dose. I really did not have a hard time

tapering off.

I am assuming when you ask what my exhaustion level was that you are

referring to my adrenal exhaustion. In 1996 when Dr. Cheney tested my

adrenals, my cortisol level was extremely low. He had recommended and I

had taken supplements and done relaxation techniques which we hoped

would help my adrenal problems, and I had done them for about eight

years. When I tested my cortisol levels in 2004, my overall level was

low but not extremely low. My worst problem at that time was that I had

practically nonexistent cortisol at 8AM (when normal levels should be

the highest) and slightly elevated levels at midnight (when levels would

normally be the lowest). What I believe is that the work with

supplements over the years (and possibly other factors) had increased my

cortisol levels so that they were not extremely low at the time I took

the cortef. It is possible that this is why I was able to wean off the

cortef without problems. I am aware that for many people whose adrenals

are extremely exhausted, there is no recovery of their own adrenals, and

they need to continue to take cortisol in order to function. I would

have done this if I had not been able to wean off. I have been taking

thyroid supplements since I was 16, and I do not think it is a tragedy

if a person needs to take a hormone supplement, such as cortisol or

thyroid.

I believe that in my case, resting the adrenals from their struggle to

produce cortisol for some months allowed my own adrenals to recover

enough to product the cortisol I need. I cannot say how long this

fortunate situation will last, but I'm going to enjoy it while it does.

My advice to anyone who needs cortisol is to take it. If you need it,

you need it. If your own adrenals recover and you can wean off the

external cortisol, good. If you can't wean off the external cortisol,

you still need it. If you need it, I believe you'll be doing yourself a

favor by taking it. If you can't wean off, it is probably because you

still need it. My only suggestion is that if you are trying to taper

off that you taper off very, very slowly. Adrenals do not adjust

quickly, so give them time. If you suffer low cortisol symptoms for

more than about three days, your adrenals are not ready to take over.

My physical exhaustion was absolutely terrible prior to the cortef.

Actually, panic and night sweats can happen from either high or low

cortisol, according to my doctor. We were not sure whether 27.5 was the

amount I needed. Most of my doctor's patients, she says, have needed

between 25-30mg of cortef a day. Some people need up to 35-40mg a day.

She says she does this in order to rest the adrenals, so that, if

possible, they will be able to start producing cortisol again. We

decided 27.5 was what I needed because when I took a higher dose, I got

high cortisol symptoms. I was under the care of an MD who specialized

in treating adrenal and thyroid problems. However, if you check out the

list, you will see that many, many people who are unable to have

an experienced doctor are treating themselves. I do have to admit that

I am something of a coward and I searched and searched and went to

extremes to locate a very high-priced doctor because I was not willing

to take what I thought of as a chance. I am now of the opinion that

cortef is not nearly as scary as the mainstream medical community would

have us believe, and that many, many mainstream doctors, especially

endocrinologists, do not have the knowledge and experience to treat the

adrenals. In the 1950's enormous doses of steroids were administered

with sometimes horrible results, including death. Apparently many

doctors haven't read anything in the years since and still believe the

modern doses of modern medications have the same effects. They don't.

If you are working with a doctor, make sure it is someone who has an

up-to-date knowledge of cortisol and its uses. There is a book, called

'Safe Uses of Cortisol' which will tell you all about this.

I was treated for thyroid. I have been treated for thyroid since I was

16 and I am now 63. I have been treated (or sometimes, mistreated, by

ignorant physicians) for all these years. Unfortunately, the thyroid

problems are not over for me, and I am currently working with yet

another doctor trying to treat my low thyroid. Just this week we are

increasing my dosage.

I hope some of this helps. I am not in the least sorry that I treated

my adrenals. I had definite adrenal symptoms which are now gone, and if

I had not treated, I would always have wondered if treating my adrenals

would help more of my symptoms. At the time I saw Dr. Cheney, he was

theorizing that there was a cascade effect which occurred in CFS, and he

theorized at that time that the adrenal problems were involved in that

cascade. I did not get a magical healing by getting my adrenals

working, which I would have loved, of having all my CFS symptoms

disappear, but it has definitely helped.

If you have any more questions, please feel free to write to me off

list. I am not sure that others are interested in this, but I am happy

to help anyone who has questions.

Nil-Happy Holidays wrote:

>

>

> Hi

> Thanks for thsi note.I am also on hormone replacement therapy so i am

> very much interested in your experience. have couple of questions if

> you don't mind.

>

> " I started Cortef at a low dose (2.5mg a day) and increased slowly until

> I got up to 27.5mg a day. I stayed on that dose for many months--I

> don't recall exactly how many. Then I tapered off slowly--at about the

> same rate as I had ramped up. If memory serves, I took about two months

> to ramp up and about two months to taper off. "

>

> Did you have saliva test done before starting cortef?or what was your

> exhaustion level? How did you decide to stop it? According to the

> improvement at your illness level or saliva testing?I am quite

> surprised that you were able to stop it?Many people including myself

> have difficulty to do that.

>

> " I had decided to treat my adrenal problems in the hope that it would

> help the longstanding CFS symptoms (I have had CFS since 1987 and I went

> on Cortef in 2004. While the cortef helped my adrenal problems (which

> now test within normal levels) and did help some problems which I

> believe were being caused by the adrenal problems (flushing, sudden

> feelings of faintness and panic, night sweats),`

> "

>

> Main adrenal issue is exhaustion?Did cortef not help on this? Actually

> panic and night sweats are signs of high cortsiol which occurs at

> earlier stages of adrenal fatigue?And i am really not sure if 27.5 mg

> cortef is needed at this stage.Did you treat yourself or were you

> under care of experienced practitioner?

>

> " it did nothing, as far

> as I can tell, to help the many varied problems caused by CFS. My hope

> was that if I got the adrenals working all right that other parts of the

> puzzle would get better. That does not seem to be the case. "

>

> Were you treated for thyroids?

> In overall would you think you got worse after cortef therapy or

> better. 2 years is not a short time it must have had some kind of impact.

>

> thanks a lot

> nil

>

>