RE: Experiences recovering from severe adrenal defiency

[Guest guest]

We need to know exactly how much hydrocortisone you are taking

daily and how many times you are splitting your dose throughout the day, and

what amount you are taking at those specific times before we can help Alison.

Luv - Sheila

Hi all,

I'm wondering if any of you who have been on Hydrocortisone could give me some

idea as to your own experiences

starting

with it.

I'm into

my second week and am having difficulty gauging how much/little I should expect

to be doing. Bearing in mind that I've

spent

pretty much most of the past year in bed, anything is an improvement and I

guess I have to give my body time to heal.

But I

must say, it's slower than I thought. I did get to go out to see the royal

wedding yesterday (my first t.v. for 12 months) but I'm

pretty

knackered today and have spent most of it back in bed.

[Guest guest]

Oh sorry - here's what I'm taking daily:7.30am - 2.5,8.30am - 10,12am - 10,4pm - 7.5,7pm - 2.5Total: 32.5 (generic hc - douglas pharmaceuticals from inhouse)Also 3 nutri adrenal extra and 4 nutrithyroid plus various vitamins and minerals.I'm finding that by 2and half/3 hours after a dose, I'm getting all the symptoms back - sore, aching lower back, a strange pulling around my jaw and sinuses. I'd be interested to know if anyone else has experienced aching back and jaw? I'm also very weary after breakfast and have a nap at about 10, then another one midday and again late afternoon - I'm in bed by 7 in the evenings! (not much fun). I don't see that I can dose any more. My best time of day is early afternoon when I'm just starting to take myself for a walk around the block.I'm wondering if the hc increases in effectiveness over time? - or whether my body is just so run down it needs time to adapt. This is the first time that I have felt what I call 'normally' tired - I realise before this, I've just been feeling incredibly ill.I'm also quite scared because I had a leaking filling last year and realise that this could have implications - but am trying not to think about this too much in order to remain positive. I have thought of trying a different brand - cortef maybe? Any ideas much welcome.>> We need to know exactly how much hydrocortisone you are taking daily and how

[Guest guest]

Alison,

I was given a dosing schedule for HC over on the adrenals forum, it was 18

months ago and I tried it for a while, it was something like 12.5 mcg daily and

it made some difference but not much.... then I read somewhere that the douglas

HC is not as strong as the cortef, so I upped it to 20 mcg a day.... and felt

tons better.....

It might be worth you having an increase, but depends how bad you were to start

with.... anything over 20 or 25 mcg a day is supposed to go some way towards

supressing your own adrenal function....... But if they don't work then

supressing them isn't going to make much difference.... I never had severe

adrenal deficiency, but after 18 months am now taking 2 or 3 NAX and 5 or 7.5

mcg hc.... Usually I take 5 but sometimes I need extra.... I'll come off

it when I feel ready to.....

The pulling round the jaw: I clench my teeth and this gives me neck and head

aches..... nice steady dose of HC and I don't do it.... but if I'm stressed

(as in not enough HC) I do.... I woke up a few mornings ago and I'd bitten a

chunk of of my lip in my sleep... now sporting a scab which looks like a

cornflake (sorry )

Being tired afer eating breakfast: usually being tired after eating shows too

much carbohydrate in the meal..... the breakfast isn't toast and/or cereal is

it? Many people who are hypothyroid seem to have a gluten problem.....

Might be worth cutting it out for a while and see if it makes a difference?

I cut it out before Christmas and feel better for not having it (not tired and

bloated)...

Are you on enough thyroid meds?

.

>

..

> I'm finding that by 2and half/3 hours after a dose, I'm getting all the

> symptoms back - sore, aching lower back, a strange pulling around my jaw

> and sinuses. I'd be interested to know if anyone else has experienced

> aching back and jaw? I'm also very weary after breakfast and have a nap

> at about 10, then another one midday and again late afternoon -

>

[Guest guest]

Hi , thanks for this. I've actually just got the dosing schedule from the adrenal forum and they've suggested I dose every 3 hours up to about 35mcg - also to look at my aldosterone which I'll speak to Dr P about. I do crave marmite (which is salty) and I have low blood pressure so wondering if I should get my aldosterone tested too - also often feel dizzy.Useful to hear sbout your experience with Cortef v . It would make sense that the is less strong - it is sooo much cheaper.I'm eating proteins with every meal - so breakfast is egg, bacon, and toms.I eat very little bread, etc. I've always been a slow starter in the mornings and I know that my cortisol levels were very low for the morning sample so maybe this is why. I think my adrenals are in a pretty bad state from what people are saying.Also I'm relieved to hear that someone else has the jaw and biting lip problem! Though sorry to hear about your cornflake:) I have permanent teeth marks on my bottom lip! My mother grinds her teeth in her sleep so it's a family trait, I guess.Thanks for your advice and will keep you posted. I'm still waiting for the short synacthen test results (though I don't expect them to reveal more than I know already through this forum.) Have a good day. All the best, Alison>> Alison,> > > I was given a dosing schedule for HC over on the adrenals forum, it was 18 months ago and I tried it for a while, it was something like >

[Guest guest]

I would try Cortef and some people believe the4 generics are

less potent, but you would have to try. Are you taking any thyroid hormone

replacement or are you just taking Nutri Thyroid? Perhaps the time has come to

start natural thyroid extract as your symptoms could be because your body is

lacking in these. Nutri Thyroid are mainly nutritional supplements only.

The leaking tooth could have serious implications and you need

to get that seen to as mercury poisoning could cause real problems.

Luv - Sheila

Oh

sorry - here's what I'm taking daily:

7.30am

- 2.5,

8.30am

- 10,

12am

- 10,

4pm

- 7.5,

7pm

- 2.5

Total:

32.5 (generic hc - douglas pharmaceuticals from inhouse)

Also

3 nutri adrenal extra and 4 nutrithyroid plus various vitamins and minerals.

,___

[Guest guest]

Hi Sheila, I'm just taking nutri thyroid - 4 tabs. I'll have a chat with Dr P about moving onto thyroid hormone replacement. The adrenal forum also suggested I consider my aldosterone too. Do you have any views on this and use of florinef?To be honest, I'm trying to keep costs down aswell - it all gets a bit expensive without any nhs help, doesn't it?I know - the leaking tooth was very frightening. I had the filling removed last summer but had a taste of metal in my mouth for about 6 months which was just horrible - especially as nobody seemed to take me seriously. I'm not sure that there is much more that I can do about it now until I have my adrenal and thyroid problems sorted. I can't have my other fillings removed yet as my adrenals wouldn't cope with the procedures and I can't detox until I've had my amalgam fillings removed. Dr P said the damage is done , so I'm trying not to dwell on it and just pray that the hc and other meds do the trick in spite of... All the best, Alison>> I would try Cortef and some people believe the4 generics are less potent,>

[Guest guest]

i think the douglas is a bit less potent in me, but then again i thoug that's no

bad thing necessarily. it's 25% of the price of cortef, but not 25% of the

potency.

hcl can help you use HC better

http://www.stopthethyroidmadness.com/adrenal-info/how-to-treat/

hertoghe recommends this schedule, according to the into on tpa uk:

http://www.tpa-uk.org.uk/cortisol_dosing.pdf

i seem to feel better on 20-10 rather than spreadout throughout the day: i feel

worse if i take it late at night (or later in the afternoon), as advocated

someplaces

it also depends who you speak to as to whether you should add in dhea at the

same time...

why do you take 2.5 in the morning though? then a bit more a bit later? I don't

understand that?

chris

>

> Oh sorry - here's what I'm taking daily:7.30am - 2.5,8.30am - 10,12am -

> 10,4pm - 7.5,7pm - 2.5Total: 32.5 (generic hc - douglas pharmaceuticals

[Guest guest]

Hi the 2.5 first thing was a (misguided) attempt to get myself going to cook an egg and bacon for breakfast when I took my main morning dose of 10. However since yesterday, I've just got a schedule from the adrenal forum. The moderator recommended dosing every 3 hours to keep on an even keel - 10/7.5/7.5/5/2.5.And it's worked incredibly well just in a day. I'm keeping my fingers xd. Some symptoms still there but my temps have been more consistent and I'm actually sitting at a table typing this -rather than in bed, which is a small miracle.Good point about potency/price of douglas v cortef. I'll see how it goes on the cheaper option until I've got more into a routine. Thanks for your comments. All best, Alison>

[Guest guest]

glad it's working for you, i myself have just restarted HC so know the

difference it can make. i was stupid to try and carry on without it. ....now i

just need all the other hormones.....

let us know how you get on.

chris

>

> Hi the 2.5 first thing was a (misguided) attempt to get myself

[Guest guest]

Hi again just wondering out of interest - how long were you on HC first time round? Are you planning to try to come off it again at a future date, do you think? Just asking as it may give me a gauge of what to expect.Alison>> glad it's working for you, i myself have just restarted HC so know the difference it can make. i was stupid to try and carry on without it. ....now i just need all the other hormones.....>

[Guest guest]

i tried it for a week and felt very depressed

tried it a few weeks later, tolerated it better.

then stayed on it for must have been 18 months till an endo wanted me off it to

test stuff. towards the end i only needed 10mg a day, but had gone up to about

40mg, even 60mg when ill. but i am not advocating that kind of dosing.

not sure how long i'll be on it for, i personally think my adrenals are

knackered after too much stress, and the answer is indefinitely. i also think i

may have a genetic adrenal problem. not planning on coming off it until i know

i am ok; truly been having some awful times over the years (got to the point

where i culdn't cope with work, just existing became stressful, and at one point

was drinking in the morning before work to cope with how i felt-hc stopped all

that). if HC gives me some stability, then so be it.

> >

[Guest guest]

Thanks - that's so helpful for me to hear how someone else has been managing on and off HC - but also sorry that you've had had so many years of stress. I have had very similar problems in the past - having always lead a very full-on life with career/family etc and sort of took my health for granted (something I hope I never do again). I had a short bout of depression 6 or so years ago (definitely linked to overdoing things and should have listened to the warning signs then). I thought I'd recovered but not enough to work and then the smallest stressful event would just tip the balance. Also like you, my family all have adrenal problems (aswell as hypothyroidism)Here's to stability! Best wishes Alison

[Guest guest]

Hi Alison

I hope the HC helps you.

i see people rushing round and i do think that they will end up causing

themselves problems. i try to warn them but they won't listen. sometimes

though life throws a load of bad things at you and it's thru coping with that

that the adrenals get burnt out, i think. that's what happened to me.

Reminds me of a lyric from a scatman john song: " I wanna be a human being, not a

human doing, i couldn't keep that pace up if I tried. "

nowadays i really don't try to push it too much and i'm past all the previous

crap that made me so unwell.

there are interesting books on burnout too, like the one by dina glouberman; i

read this in 2003 after i was burntout. with hindsight it sounds like the

author is describing adrenal fatigue, but from a psychological perspective. i

think the book is called the joy of burnout.

depression, curse of the strong, by dr cantopher talks about how the strong get

stress related depression. it's the people who challenge the situtaion and try

to improve etc that get stress related problems. could this be adrenal fatigue

too?

chris

>

> Thanks - that's so helpful for me to hear how someone else has

> been managing on and off HC - but also sorry that you've had had so many

> years of stress. I have had very similar problems in the past - having

> always lead a very full-on life with career/family etc and sort of took

> my health for granted (something I hope I never do again). I had a short