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Old 10-23-2008, 11:43 AM   #1
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Red face New to board. Recently Dx with Adrenal Fatigue- need advice

31 yr old recently took Adrenal Stress Index due to chronic fatigue.
Cortisol levels severly depressed.
7am- 5 nM (ref. value 13-24 nM)
11 am-<1 (ref. value 5-10 nM)
4 pm- <1 (ref. value 3-8 nM)
11 pm- <1 (ref. value 1-4 nM)
DHEA- Pooled value- 2 (ref. value 3-10)-- showed zone 7- Adrenal Fatigue.
Insulin- fasting <3 Normal
post-prandial <3 Depressed.

I've been prescribed 5 mg Hydrocortisone to take once at 7 am, noon, and 4 pm as well as 5 mg DHEA once daily.
I was wanting to start out conservatively because I'm afraid of adverse side effects. Has anyone had any side effects from Hydrocortisone and DHEA? Weight gain, hair growth, etc?

Anyone been successful in treating Adrenal Fatigue??

 
Old 10-24-2008, 03:38 AM   #2
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Hi Nicole. I'm 30, and have also had CFS/FM for 8 years, and recently diagnosed with Adrenal Insufficiency, via an insulin tolerance test.

How severe is your CFS? How are you feeling before you've started the Cortef? Are you able to cook, clean, go to shops etc, or much worse?

They are extremely low results.. so it seems you may benefit alot from the Cortef i'd think.

Have you tried other adrenal supps first? Licorice root is what i started on when i had severe adrenal symptoms. It really picked me up in a big way, but its effect wore off and i needed more until i got bad enough to need hydrocortisone (cortef). I haven't been on it long and am on a bit of a rollercoaster, but so far it's provided some benefits such as really helping my constant hypoglycaemia, stopped the freezing cold inner shakes i was having, etc. I have periods of feeling alot better, but so far the're only small windows, I have a long way to go yet.

The DHEA can and does help alot of people with AF/AI/Addisons. I have severe liver detox impairment so dhea causes some side effects for me, but not for most. I may try it in cream form next instead of tablets/lozenges to bypass the digetsive tract.

Let us know how you are going. ~Chris.


Quote:
Originally Posted by nicoleaua View Post
31 yr old recently took Adrenal Stress Index due to chronic fatigue.
Cortisol levels severly depressed.
7am- 5 nM (ref. value 13-24 nM)
11 am-<1 (ref. value 5-10 nM)
4 pm- <1 (ref. value 3-8 nM)
11 pm- <1 (ref. value 1-4 nM)
DHEA- Pooled value- 2 (ref. value 3-10)-- showed zone 7- Adrenal Fatigue.
Insulin- fasting <3 Normal
post-prandial <3 Depressed.

I've been prescribed 5 mg Hydrocortisone to take once at 7 am, noon, and 4 pm as well as 5 mg DHEA once daily.
I was wanting to start out conservatively because I'm afraid of adverse side effects. Has anyone had any side effects from Hydrocortisone and DHEA? Weight gain, hair growth, etc?

Anyone been successful in treating Adrenal Fatigue??

 
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Old 10-24-2008, 06:51 AM   #3
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Thank you for your reply. I have a low energy level every day- I don't have the energy for cooking or shopping but I manage to go to work. I'm hoping that the medication will level me out before I get to the point of shutting down completely. Today was the first day taking hydrocortisone and DHEA so I'm anxious to see how I feel and whether it makes a difference. My doctor told me that my levels were too low to try licorice. She said that it only works when your cortisol levels are slightly depressed. It gives me hope that you've had some windows of improvement Hang in there...

 
Old 07-13-2009, 09:49 PM   #4
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Quote:
Originally Posted by nicoleaua View Post
Thank you for your reply. I have a low energy level every day- I don't have the energy for cooking or shopping but I manage to go to work. I'm hoping that the medication will level me out before I get to the point of shutting down completely. Today was the first day taking hydrocortisone and DHEA so I'm anxious to see how I feel and whether it makes a difference. My doctor told me that my levels were too low to try licorice. She said that it only works when your cortisol levels are slightly depressed. It gives me hope that you've had some windows of improvement Hang in there...
hi nicoleaua. i live in atlanta also but cannot find a doctor who will perscribe me hydrocortisone. my saliva tests were almost identical to yours. has the protocol that you are on helped you? please let me know the name and number of the doctor that you see for your adrenal fatigue. i am so desperate to feel better. thanks

 
Old 07-14-2009, 12:16 AM   #5
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

3x5mg + 5mg of DHEA is very conserative. It will take the DHEA several weeks to kick in, and the hydrocortisone will take some time as well. Many people don't see an improvement for many months.

That dose may be too low to recharge your system and you may need higher doses to get feeling normal and then cut back a bit.

Last edited by orion; 07-14-2009 at 02:20 PM.

 
Old 07-14-2009, 11:38 AM   #6
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Dear annaj0507,
Dr. Gretchen Mitchell, in Alpharetta treats my adrenal fatigue as well as other bioidentical hormone replacement therapy. The web address is * link to commercial website and related info removed by hb-mod, moderator *

I have noticed a huge improvement in my energy level. I can actually get up in the morning now It has been great for me and I would recommend her to anyone

Last edited by hb-mod; 07-14-2009 at 12:25 PM. Reason: Please don't post links and/or information regarding commercial websites as per Posting Policy. Thanks.

 
Old 07-15-2009, 12:04 AM   #7
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Quote:
Originally Posted by nicoleaua View Post
Dear annaj0507,
Dr. Gretchen Mitchell, in Alpharetta treats my adrenal fatigue as well as other bioidentical hormone replacement therapy. The web address is * link to commercial website and related info removed by hb-mod, moderator *

I have noticed a huge improvement in my energy level. I can actually get up in the morning now It has been great for me and I would recommend her to anyone
Hey Nicole. Glad to hear you are improving! 9 months later on HC and I'm still wrecked unfortunately For some reason even though HC has helped the awful state I was in (crashing and going to ER every week for 6 weeks during august/september last year), im still absolutely ruined with crushing fatigue and brain fog every day. In fact my cognitive dysfunction / brain fog is worse than it's ever been since being on HC.

Its strange I had to go up to high doses very quickly, like within 4 weeks of starting (im on 40mg minimum, often 42-45mg), as the HC wears off in me every 2 hours or so, and i have to dose about 6-8 times a day AND during the night when i wake up.

Im still in bed about 23.5hours a day beacuse im so weak, tired & out of it all the time. I'd say my CFS is worse than ever. I think it may be because of my poor tolerance to drugs, my body just doesnt use the HC efficiently enough, however i need it to live so im in quite a situation.

I haven't left my house in about 5 months now except an occasional trip to the letterbox. Back in feb was the last time i attempted a dr's appointment, and that was about 1pm - just being driven 2 suburbs away and walking about 20 metres into the drs' office, my heart rate went up to over 160bpm i'd reckon, and everything was blacking out around me. I had to lay on their floor as not to pass out, and i was shaking and freezing cold. Almost going into adrenal crisis. I had to take about extra 20mg HC during that 20 mins I was there which BARELY got me out of it. Then driven home and crashed to sleep for a couple hours. So I haven't even attempted to go out since.

It's really bizzare as to why im on a high dose and having such a terrible time. I haven't met many as bad as me.

What else are you on / doing for your adrenals? Im trying a few different experimental treatments for the CFS, hoping that if i fix something else the hc will start working better.

~Chris.
----------------------
31, Male
5'9, 63kg (138lb)
Secondary AI, CFS/MCS/FM
42mg HC, 50mg Testogel
Melbourne, Australia.
----------------------

 
Old 07-15-2009, 02:19 AM   #8
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making777 HB User
Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Sypher7, have you considered Prednisone or tried it before? It's half-life is much longer than the HC and might cover you better. I'm just curious b/c you sound like you are doing so poorly on the HC. I started on Pred, changed to HC b/c of sleeping probems, but felt like I was on a rollercoaster with the HC and switched back to Pred (it's cheaper here too!). Now that I am on a good dose I fel better than I have in years. I still have a need to stress dose on occasion, but nothing like the HC. I sure hope you feel better soon!

MaryAnn K.
7mg Pred every day,
Norethindrone (Testosterone) days 16-25 of the female cycle,
12.5mg DHEA every day
PLUS a large load of Multivits and supplements

 
Old 07-15-2009, 11:59 AM   #9
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Quote:
Originally Posted by Sypher7 View Post
9 months later on HC and I'm still wrecked unfortunately For some reason even though HC has helped the awful state I was in (crashing and going to ER every week for 6 weeks during august/september last year), im still absolutely ruined with crushing fatigue and brain fog every day. In fact my cognitive dysfunction / brain fog is worse than it's ever been since being on HC.
You may be suffering from yeast/fungus infection in your intestines. This often happens after repeated antibiotic use and hydrocortisone promotes the growth of fungus as well. The solution is to go on a zero sugar diet for at least 2 months, and get a prescription for an antifungal called Nystatin. You must take the pills, not the liquid (which contains a lot of sugar) and take the pills for at least a month probably two months.

If you have a pituitary problem associated with adrenal insufficiency then you may need to go on growth hormone (symptoms include, brain fog, muscle/joint pain, a form of depression called apathy, memory/concentration problem and a weird thing where you think something and then before you can say it out loud you forgot what you were thinking).

In addition, everyone taking hydrocortisone is also deficient in DHEA. I would begin taking 25mg per day. DHEA will improve your immunity and breathing and thus increase your exercise capacity; it also has several other beneficial effects on your body (DHEA is the most abundant hormone in a normal human body).

You should also begin taking 50mg of zinc, 2000 iU of vitamin D, 1mg of folic acid as well as a calcium/magnesium supplement. All of those will act to improve your immunity.

It took me a year to find out HC wasn't doing it for me and I only discovered by accident that Nystatin could help along with growth hormone and DHEA.

What was the cause of your need to take testogel? I would suggest that you should be taking the T shots instead. The gel is not always reliable and low testosterone could be contributing to your symptoms.

Last edited by orion; 07-15-2009 at 12:04 PM.

 
Old 07-15-2009, 04:38 PM   #10
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Quote:
Originally Posted by nicoleaua View Post
Dear annaj0507,
Dr. Gretchen Mitchell, in Alpharetta treats my adrenal fatigue as well as other bioidentical hormone replacement therapy. The web address is * link to commercial website and related info removed by hb-mod, moderator *

I have noticed a huge improvement in my energy level. I can actually get up in the morning now It has been great for me and I would recommend her to anyone
nicoleaua- thanks so much for the information. i happen to live in alpharetta and dr mitchell is about 10 min from me. i called her office and asked if she accepts my insurance. they said that they don't accept my insurance and that she is not accepting new patients. they then asked me if i wanted to see another doctor. i asked if they operate the same way that dr. mitchell does-if they do saliva testing and believe in adrenal fatigue and so on. their response was "ohh you're interested in that...ok in that case we can get you in with her next week and it's gonna cost 250$ for the initial appointment." anyways, is that what you paid? also, did they tell you you have to be on the HC for life? do you also happen to be hypothyroid by any chance? i am so i have to deal with that as well as estrogen/progesterone problems. sorry for the million questions...i guess i just want to be convinced of spending that amount of money to go and see her. i went to a homeopathic md before and they didn't help me at all and i spent a lot of money on him. he kept stringing me along telling me he'd perscribe me HC and i'd have to come back for appts every week. $1k later, he never did, even though my saliva tests turned out almost identical to yours, and i ended up dropping him b/c it was such a waste of money. i'm scared of having that same scenario happen again. sorry for the long postand the bazilion questions.

 
Old 07-29-2009, 11:35 PM   #11
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Quote:
Originally Posted by Sypher7 View Post
Hey Nicole. Glad to hear you are improving! 9 months later on HC and I'm still wrecked unfortunately For some reason even though HC has helped the awful state I was in (crashing and going to ER every week for 6 weeks during august/september last year), im still absolutely ruined with crushing fatigue and brain fog every day. In fact my cognitive dysfunction / brain fog is worse than it's ever been since being on HC.

Its strange I had to go up to high doses very quickly, like within 4 weeks of starting (im on 40mg minimum, often 42-45mg), as the HC wears off in me every 2 hours or so, and i have to dose about 6-8 times a day AND during the night when i wake up.

Im still in bed about 23.5hours a day beacuse im so weak, tired & out of it all the time. I'd say my CFS is worse than ever. I think it may be because of my poor tolerance to drugs, my body just doesnt use the HC efficiently enough, however i need it to live so im in quite a situation.

I haven't left my house in about 5 months now except an occasional trip to the letterbox. Back in feb was the last time i attempted a dr's appointment, and that was about 1pm - just being driven 2 suburbs away and walking about 20 metres into the drs' office, my heart rate went up to over 160bpm i'd reckon, and everything was blacking out around me. I had to lay on their floor as not to pass out, and i was shaking and freezing cold. Almost going into adrenal crisis. I had to take about extra 20mg HC during that 20 mins I was there which BARELY got me out of it. Then driven home and crashed to sleep for a couple hours. So I haven't even attempted to go out since.

It's really bizzare as to why im on a high dose and having such a terrible time. I haven't met many as bad as me.

What else are you on / doing for your adrenals? Im trying a few different experimental treatments for the CFS, hoping that if i fix something else the hc will start working better.

~Chris.
----------------------
31, Male
5'9, 63kg (138lb)
Secondary AI, CFS/MCS/FM
42mg HC, 50mg Testogel
Melbourne, Australia.
----------------------
Something is not right here. You can get fatigue from to much steriods, where your muscles atrophy, I can't think of the name right this minute. Look it up. Or, you need to change your prednisone, or be checked for POTS, or Hypothyroidism. Are you sure you are not Cushing from all the steriods? That can happen too. I get the feeling it isn't the HC that isn't working for you, its the diagnosis that isnt working. You are not balanced correctly for some reason, either it be because there is an underlining issue or you are over-medicated, or the wrong medication for you is being used. PLEASE, do something to change this. Call another dr and be evaluated. Please let us know how you are doing.

 
Old 07-30-2009, 11:18 PM   #12
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Hey there Kris. Thanks for the reply.

I realise these things about 'too much steroid'. However, my body rips through the HC SO fast, that I get low cortisol symptoms all the time, even on my high dose! I do have slight cushings symptoms, a little puffiness around the face, and some stomach weight gain, but i was very gaunt before, very underweight.. and now I just look normal to most people. This is the best weight i've been since i ever first got CFS 9 years ago actually! Albeit i've never had central abdo fat before like i do now (which you can only see when i sit down). But still.

I don't have muscle atrophy, if anything i've gained a little without even doing anything. Im on testosterone aswell though, have been for years, so perhaps this prevents the muscle breakdown. As mentioned, was very thin and unwell before diagnosis. As for POTS - that was alot worse before AI than now. I still get it now and then, but that's only if I haven't waited for the HC to get into my system enough before i try to get up and do things. Before dx and HC, i would be laying there cold, shaky and weak, and heart rate of about 85 or so, and getting up would often send it skyrocketting to about 140-160bpm within seconds. Doesnt get that bad often now unless i stand up too long.

I'm still not good and rarely leave the house - mainly due to brain fog and still get orthostatic intolerance, but its more of a weakness and increase of all symptoms especially brain fog and heaviness in the body when ive been up too long.

I too think something isn't balanced, because alot of people do alot better than I am on HC. I think part of the problem is that it metabolizes far too quickly, hence needing the high dose, but still getting low cort symptoms all the time. I tried prednisolone, and unfortunatley i don't tolerate it at all. It makes my cognitive dysfunction worse than ever, and even brings on slight psychotic symptoms - my brain feels scrambled, can't think at ALL, and I cry every day on it for nothing. So i'm stuck with HC for now.

I just got blood tests today to check thyroid (been a long time coming) - had to organise it privately to get FT3 and RT3 done as no ordinary GP would order those tests. That's also another problem - ive had to work with an old dr from up the coast, or alternative practitioners on the phone, because i can rarely even get out to SEE a Dr which sux. I know i need to be working with them regularly, and just cant do it as i can't be out for that long. I almost had an adrenal crisis back in feb just from going to a dr's appointment in the middle of the day. Almost passed out in his surgery - was blacking out, freezing cold and shaking. Took a good 20-25mg dose of HC to get me out of it, and even then i got home and crashed straight to sleep. This is where it would be SO NICE if i could tolerate prednisolone, because my body just doesnt process drugs well including HC.

So will see what these thyroid tests show, and just hope i can get to see a dr some time soon.

Thanks again. ~Chris.


Quote:
Originally Posted by kris45 View Post
Something is not right here. You can get fatigue from to much steriods, where your muscles atrophy, I can't think of the name right this minute. Look it up. Or, you need to change your prednisone, or be checked for POTS, or Hypothyroidism. Are you sure you are not Cushing from all the steriods? That can happen too. I get the feeling it isn't the HC that isn't working for you, its the diagnosis that isnt working. You are not balanced correctly for some reason, either it be because there is an underlining issue or you are over-medicated, or the wrong medication for you is being used. PLEASE, do something to change this. Call another dr and be evaluated. Please let us know how you are doing.

 
Old 07-30-2009, 11:39 PM   #13
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Hi Orion - been meaning to get back to you, but brain fog & other such issues have got me a bit behind! Thanks for the informative reply.

I have been dealing with candida type issues for years with the CFS. Nystatin never did anything for it, even at very high doses for months at a time. I also recently (just before AI diagnosis) had a microbial ecology profile from metametrix which showed I have no fungus or even bad bacteria in the intestines. And had just been on antibiotics a few weeks earlier too.

I do know i have systemic fungus to a low level though, as years ago when i tried difflucan, it improved all of my CFS symptoms within a few days to a significant degree. However because my liver detox is VERY poor (extremely low glutathionation), it made me tremendously sick - my liver had so much pain and i was very nauseous to the point of not being able to eat a thing any day I took it. Plus systemic flare up of every possible symptom you can think of! So i can't take it, too toxic. However it showed that fungus is a problem as i felt so good after a couple days on it only. I don't know it may be in the gut by now from taking cortisone, who knows. I don't eat much sugar because of this, but still eat carbs as i feel shaky and unstable if i try to eat low carb.

Yes well they said it's likely a pituitary problem with the AI, because i didn't get an increase in cortisol from the insulin tolerance test (which of course tests it from a pituitary level, not just the adrenals as the ACTH stim does).

That sounds incredible about growth hormone. I'm not sure they've tested that at all! And I think they don't often because it's expensive to treat etc.. not sure. I definitely have all of what you mention there apart from the last part, however i do have trouble with word finding etc often, simple things even. And i've always been considered quite sharp before lately.

There's yet another unfortunate problem for me. My last tests showed almost zero DHEA. It was low before too, but within the normal range. Since HC, it's knocked it out to almost zero. Thing is - i don't tolerate that either! I've tried many times in the past and again recently. I tried troches (lozenges) and then even cream to bypass the liver. Same result every time. Increases brain fog and cognitive dysfunction massively is the main problem. Gives slight liver ache. The brain fog is so bad on it even if i take such small amounts - 5-10mg. I think it's all to do with poor liver detox. I really am bad in this way in tolerating things.

Once again.. can no way tolerate that much zinc. I get unwell from anything more than about 15mg a day. I do take cal/mag already, and 5000iu of D3 most days. Also high dose vit C helps me noticably more than almost anything else does/has. about 4-6 grams a day at least. I notice a huge difference if i stop taking it, all around.

They found i had VERY low testosterone when i first got sick in 2000, below the lowest end of the normal range. Put me on andriol caps which i was on for about a few years before testogel came out. Testogel was SO much better for me. I got no side effects, and the andriol caps sometimes caused liver aches, testogel not at all. Also i recently had blood tests for testo - total and free - and both were above mid range which was good, so it does work for me.

I'm interested to know how you found out about growth hormone. What would I say/ask for to get them to test for it?

Thanks, ~Chris.

Last edited by hb-mod; 08-05-2009 at 02:09 AM. Reason: Removed Quote.

 
Old 08-02-2009, 12:58 AM   #14
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

Myopathy (the name I was looking for from the other post) can feel like low steroids but in essence you are getting to much. A blood test can tell you either way. If you are slight cushings that also leads to the thought you are receiving to much steriods. Have you ever thought of going to the Mayo Clinic? I feel like they might be able to help you. There is one in Arizona, Minnosota, and Florida. They take most insurances too.

Last edited by hb-mod; 08-05-2009 at 02:08 AM. Reason: Removed unnecessary Quote.

 
Old 08-04-2009, 05:58 PM   #15
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Re: New to board. Recently Dx with Adrenal Fatigue- need advice

ADRENAL FATIGUE!! Hi saw this thread, hope you guys don't mind if I jump on. I have similiar situation. Hypothyroid, diagnosed w/ adrenal fat. in Apr 09. Seeing new Dr. who believes in vitamins, minerals and such, wants to get me off all the prescription meds I am on if we can. I also have fibromyalgia and numerous back problems.

Currently I'm on 10mg hydrocortizone am and 2 pm. B12 shots (give myself) twice a weeks, 5000 units vit D, 2000 mg vit c, lithium salt twice a day (20 mg ea), fibronal tablets (fibro), armour thyroid 60 mg am, 30 mg T-3 am and at 2 pm. percocet for pain. Topamax migraines, lyrica, celebrex.

Right now can't drive more than 10 min from home w/o danger of falling asleep at the wheel. I do manage to walk every monring, Make myself do that, but want to crawl back into back after. sometimes I do. its awful. I pile the diet coke and tootsie rolls in during the day when I have to get things done. HELP!

CJ

Last edited by noevr; 08-05-2009 at 02:31 PM.

 
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