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isn't treatment supposed to make you feel better?
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isn't treatment supposed to make you feel better?

if i have secondary adrenalinsufficiency, isn't putting me on hydrocortisone supposed to make me feel better?   the first day the doc gave it to me, she told me to take some medication before i even got home---she said i should start feeling better really soon----didn't happen.   she also put me on DHEA and testosterone cream and armour thyroid.  supposedly, my blood tests look fairly stabilized---but i feel like crap and i get the shakes around 10 am.  i tried taking 2.5 mgs of hydrocortisone the other day---and it seemed to help--then i took the other 2.5 around 3 pm.  i had taken 20 mgs arlound 6 am.  it seemed to work relatively well for me that day.  but, i've got to stop messing around with how i take it from day to day and stick with one way for a little while before changing.  how long would you suggest i give my "trials" before trying something new if it isn't working that way?
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657231_tn?1390151580
It may also be diet. AI is basically the body cannot hold salt. Salt fall, potassium rises - have you had electrolytes tested?
Do you need salt - do you crave salt? Are you drinking enough?
Many people need florinef as well - it helps you keep salt. Have you had renin and aldosterone tested?
Do you have a copy of your tests?
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Avatar_n_tn
i don't crave salt.  i could probably use drinking more---but i already have to pee so often that i hate to drink too much.   i seem to crave alot of water right before i go to bed--not sure why---but i sure have strong, weird smelling urine in the morning sometimes.
the endo has never tested renin or aldosterone-----i think she has testd electrolytes before---but i will have to go look at my tests to be sure.  i try to get copies of all of my blood work.

ihave had times when i have woken up in the morning with my fingers swollen and my face kind of puffy---like i was retaining water.  it usually goes away after a little while.
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Avatar_m_tn
Hello, I too suffer secondary adrenal insufficiency.

As to you not feeling well, perhaps you were not put on a high enough dose?

As to your question on when to take the hydrocortisone - you seem  to want to take it all at the one time of the day - note it doesnt make diddly squat of difference when you take it (for its effects to work). You will note that if you take more than say 5 mg after 5pm you will have problems sleeping.

I started taking all my tablets in the morning and then changed to most in the morning and  some in the afternoon. So long as I didnt - on a daily basis - take more than I was told to take, I was fine.

Rumpled is definitely worth listening to when she recommends water. I drink 2-3 liters a day and YES I visit the toilet to pee often BUT I feel FAR FAR better than I would drinking what most people drink, which is close to half what I drink. Doing renin and alderstone tests are indeed worthwhile.
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657231_tn?1390151580
In my experience, if you are retaining water, you need to drink more. Your body is holding because it feels it does not have enough. It seems wrong but it works.

Renin and aldosterone will let the doc know about the water retention, BP and all - but some docs just think the sodium and potassium are good enough indicators but sometimes the tests help out.

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Avatar_n_tn
wouldn't it be obvious if i was retaining water?  the times when i have woken up feeling stiff in the hands and such, as if they were swollen, arre not very often, although i do wake up puffy under my eyes.  other wise, there doesn't seem to be any apparent water retention---unless there are signs or symptoms i am not aware of that would indicate water retention.

i'm assuming the doc never tested renin or aldosterone because those supposedly are only affected with primary adrenainsufficiency.

if i understand you right about the timing of meds----it doesn't matter when i take it, as long as i get all of it taken during the day?    i have a tendency to get a little shaky somewhere between 10-12 in the morning, so what i have started doing is taking 20 mgs first thing in the morning---which would be around 6-6:30 am, then i take 2.5 mgs around 10am-12 noon, and then i take the last 2.5 around 3 pm.  does this sound reasonable?   it seems to help with the shaking and since i don't take any after 3 (or 4 if i forget) it doesn't seem to affect my sleep.
is 30 mgs a fairly normal dose?  it seems like alot of people are only on about 20 mgs.  i was switche down to 15 mgs a day at one time because i thought it was making me gain weight (it wasn't--it was another med)  i eventually went back to the higher dose on my own---and the doc left it there when i saw her.
she doesn't ask me any questions about how i am feeling when i see her.  she want to see me every six months to do an ultrsound on my thyroid to check the size of my nodules----and she runs blood work before i see her---but it seems to be different blood work every time.  she seems more concerned about the nodules that i have had for 13 years than she does about my adrenal insufficiency and my thyroid function--and whether or not the blance between the two is right.
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Avatar_n_tn
low cortisol-----do you ever adjust when you take your meds, or did you finally settle on a timing that worked best for you---or does it just not really make any difference on how you feel when you take it?

maybe i should ask this---do you take it a certain way because of how you feel, or more for convenience?
my family doc says he has some people that take it all in the morning.   i'm just wondering what our bodies have to use to deal with stress later in the day if all of the meds are taken in the morning, since the half life is only 4-6 hours, and our bodies don't produce enough on their own to FUNCTION WITHOUT REPLACEMENT.
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Avatar_m_tn
Hi

You say "if i understand you right about the timing of meds----it doesn't matter when i take it, as long as i get all of it taken during the day?    i have a tendency to get a little shaky somewhere between 10-12 in the morning, so what i have started doing is taking 20 mgs first thing in the morning---which would be around 6-6:30 am, then i take 2.5 mgs around 10am-12 noon, and then i take the last 2.5 around 3 pm.  does this sound reasonable?   it seems to help with the shaking and since i don't take any after 3 (or 4 if i forget) it doesn't seem to affect my sleep".

Yes this is reasonable but what if instead of 20 mg at 6:00-6:30 you try 10 mgs at 6-6:30 and another 10 mg at 10:00am and 5 mg say at 4pm

You worry that you're asked to return in 6 mths. You hint that you'd like to see the endo sooner.

Six mths is typical because the endo wants to give the hydrocortisone time to do its job
What I would expect is that 1-2 weeks before seeing the doctor you will have blood draws for a host is factors including cortisol BOTH 8:00am and 5:00 pm
  
You ask me "do you ever adjust when you take your meds, or did you finally settle on a timing that worked best for you---or does it just not really make any difference on how you feel when you take it? "

I am now down to 10 mg/day and found that taking it at 2:00 pm works best for me.

You ask " i'm just wondering what our bodies have to use to deal with stress later in the day if all of the meds are taken in the morning, since the half life is only 4-6 hours, and our bodies don't produce enough on their own to FUNCTION WITHOUT REPLACEMENT".      

I an unsure of the half life. But your point is valid, that is '"how do we function if all the meds are taken in the morning?'. That is why after being told to take all mine after b/fast and noting I felt losuy later in teh day, I started taking the meds at different times in the day and see what worked best for me. For some reason, all at 2:00pm now is perfect for me.

If I were you I'd give my above suggestion a go:

6:00- 06:30 am 10 mg
10:00 am           10 mg
04:00 pm            5 mg

You were on 25 mg/day and with this change in timings you are keeping to the same dosage per day.

One more thing: while I agree that seeing the endo in 6 mths is sound, I think it very wise to have blood draws every 3 mths so you can track yr progress.
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Avatar_n_tn
i goofed when i wrote my medication amount---i am actually on 30 mgs a day.  i
take two separate doses of 5 mgs--not 2.5mgs.

i think i'll try dividing the meds into 3 separate 10 mg doses at about the times you suggested and see how that works.

i just can't believe how lousy i am feeling this winter.  i didn't feel this yucky the first year i was on hydrocortisone----but i seem to have developed eosinophilic esophagitis in the last year between esophagus dilations.  no eos last december, but plenty this dec.  i suppose this could be part of it.

i stayed away from my endo for an entire year instead of getting in at 6 months this last year----i am just not happy with her as a doctor---very disorganized office and she just doesn't give me information without me having to research it first and then ask her about it. she has still never given me instructions on stress dosing and i asked specifically about it (through the nurse).

is it normal for those of us with low cortisol to just not handle stress very well?   i do fine some days, but others i just can't deal with very much at all.  our life has been non-stop stress for so long i sometimes wonder if that is alot of the reason the meds just don't seem to make me feel better.  my fatigue has never improved---but that could be the fibro.
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657231_tn?1390151580
If you are fighting an illness - that eats cortisol.
As for not handling stress well - yes - after all, the stress response is impaired so your BP goes down, not up etc etc. so you tend to feel sicker.

Can you find another endo - you do need monitoring and it helps to at least have a somewhat decent endo in case your bod gets into trouble.
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Avatar_n_tn
my family doc is trying to get me into another endo---3 hours away (we live in a small town), but he says they won't take just anybody.  he does feel, however, that since i have already been seeing and endo and that i have enough blood work that is "off" that they will probably take me as a patient.  right now, my blood work appears somewhat stabilized---but sure feel crappy most days---this winter has been especially bad---and sitting at the computer makes me feel worse----but this is the only way i can get information.  i'm thinking i need a laptop so that i can get comfortable in my soft chair, prop my laptop on pillows to get everything where i need it, and maybe i will be able to use the computer without feeling like i have been run over by a steam roller.

i was sure i was going to age much more gracefully than this!!!!
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Avatar_n_tn
when i get stressed i get feeling so agitated inside--it is not just a mental thing---i feel it physically all through my body, just like my nerves have all been set on hypersensitivity mode---is this what happens when there isn't enough cortisol to kick in, or is something else happening to me?    i can try taking a muscle relaxxant or clonazepam and they often don't do anything to calm me down.  any suggestions on how to handle things when i get like this?
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657231_tn?1390151580
You may need to take a bit of HC and see how that goes - experiment though - as too much may make  you too anxious as well. Start out with 2.5 and see if that helps.

I would also see if drinking something like a v-8 will help - you may need the salt when you are stressed as the reactions we have are opposite of normal - bp falls instead of rises etc. so I try to be aware. You are trying to relax when your body already cannot rise to the occasion and that may be why those don't feel so good?

Oh and avoid stress lol... (had to throw in the doc thing - I hate it when they say that!)
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