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Addison's Disease Message Board


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I'm only 20 so can't relate on the menopause sorry. Have you researched DHEA at all? Im just about to start on it at my endo's advice - it has some control over hormones esp. estrogen etc and is normally produced by the adrenal gland so we dont produce it. Its not exactly known how it works but lots of people claim it increases their energy and general wellbeing by a lot. Could be worth looking into.
Also could try supplements - omega 3 fish oil, women's multi, magnesium etc and adjust diet, exercise and stress levels in your life to see if it makes a difference.
And as difficult as it is, sometimes literally forcing yourself to get up at say 8am (multiple alarms etc) does help you get to sleep earlier and can make a better pattern. Have your morning dose the second you wake up too.
Good luck :)
Elena,

Thanks so much for all of your suggestions. I used to take DHEA & stopped because I was taking so many meds and supplements, and just felt like I needed to cut some things out. However, I've been reading about DHEA, and this clearly is one that I should not have cut out, so I'm back on it. However, being that DHEA counteracts cortisol, I'm wondering if this means that more steroids are needed when taking DHEA? They're antagonists. Cortisol breaks down muscle, etc (catabolic) and DHEA builds muscle, etc. (anabolic) Let me know if your endo mentioned anything about this (increasing steroids when taking DHEA). Also, how much DHEA do you take?

Elena, you're so young. How long have you had Addison's? And I'm curious.. how much cortisone do you take daily? Hydrocortisone or Prednisone?

You are so right on all the things you mentioned; lessening stress, better diet, Omega 3's, etc. I've got a lot of sadness and stress right now so am working on clearing my mind, meditation, yoga, letting go of "stuff", etc. I think emotional stress can be more harmful for health than physical. Atleast this has been my experience. So love yourself and take good care of yourself and your emotional well-being .. emotional resilience will make a world of difference as you continue on your life's journey, especially with Adrenal Insufficiency.

Take care over there in beautiful New Zealand ...

Mollie ;)
Hello,

No my endo didn't mention anything about needing to increase cortisol, and until reading your comment I didn't realise they were antagonists! That's interesting, I may read up a bit more on it and maybe ask my endo about it when I see him in a couple of months. I'm on a starting trial dose of 25mg daily of DHEA (endo said the normal dose is 25-50mg). I haven't actually started it yet cos I'm still waiting for the chemist to have it ordered in, but will start in the next week. How much were you taking and how much of a difference do you think it made?

I was diagnosed when I was 8, but had symptoms for quite some time before that. I'm on 15mg Hydrocortisone at the moment (10 in the am, and 5 at 1pm) but I was on a lot more until recently. My new endo thinks I have been on too much for a while judging by my weight gain and low energy etc. I think the lower dose has improved my daily well-being so thats a nice change! I would be interested in trying prednisone at some point in my life. What are you on?

And I can relate on the emotional stress - very busy with studying, flatmates, a family bereavement, a breakup, missing home, past life/experiences catching up with me, and poor health - extremely fatigued and constant headaches along with a bunch of other annoying symptoms. So yes I am trying to take care of myself and it truely does work (the only problem is you need the energy to take care of yourself, which until now I didn't have and even now is limited). Hope you're looking after yourself too!

Take care :)
Hi Elena,

I do remember that I felt better while taking DHEA. Can't exactly put my finger on what it was, but better. Then again, could've been something else as I've tried many different supplements. However, I was only taking 5-10 mg. I'd love to hear how you feel after taking it for awhile. The more I read about it.. seems soooo vitally important - DHEA production is totally suppressed when taking cortisone.

You are so fortunate that you're able to take only 15 mg of HC. I would be 6 feet under on that dose. My dosing has fluctuated a lot in the past few years, as I'm trying to arrive upon the right "fit". As I mentioned in previous post, I've had a lot of emotional and financial stress in the past couple of years. I went through a very painful and heartbreaking experience with my now ex-husband. This had a HUGE and somewhat devastating effect on my physical condition. God, I wish I could go back, as my health greatly deteriorated since this trauma and some of it seems irreversible. I'm 5'3 and only weigh 80 lbs. I lost a lot of weight & now cannot gain at all. I eat all of the time & have lots of problems with blood sugar control, but can't gain a pound. This is extremely hard on my head because we all want to be loved and touched, and I cant imagine it now. I'm like skin & bones. Anyway, I'm a huge believer in the mind/body connection.. I'm living proof of it for sure, so do your best to keep your chin to the sky.. love yourself * always believe in yourself.

As for what I take now in the way of meds is 5 mg prednisone (equivalent to 20 mg cortisone), and 15 mg HC. So I take 35 mg/daily of cortisol replacement.. and sometimes a bit more if I have overt symptoms of being low. I've been in "adrenal crisis" a number of times so I do all I can to avoid trips to the ER. Most there don't even know what Addison's Disease is. Although it's quite serious and life-threatening, my experience has been that few doctors are familiar with it.

Elena, I'm not encouraging you to increase your meds since you said that you feel better now that you've reduced. But it's curious to me that you are able to get by on so little, and you are fine from 1pm until 8am the next day without any cortisone? So I think that your adrenals are still producing some cortisol. Yeah!! But because you are still having so much fatigue and headaches, makes me think that you are under medicated, as both are main symptoms of low cortisol. But if you feel better on less, more power to ya.

I was diagnosed in 2007 and for the first few years, I was on 25 mg HC, but over time (and with more stress), my adrenals ended up totally suppressed and so my needs for replacement also increased. I used to not be aware of so many symptoms, and now I can't go 15 minutes past when my next dose is due .. I feel it and know when it's time. Kind of freaks me out sometimes so I have to take a deep breath and calm my mind, etc. With an illness like this, "acceptance" and belief in a Higher Power are the name of the game.

I would stay away from prednisone for now .. I don't think it's a good idea to have your body constantly bathed in cortisol. There are a lot of negative side effects of this, and it's not at all in line with the body's natural cortisol rhythm. Nonetheless, there is a time and a place and it's been a life-saver for me. I burn through hydrocortisone very quickly. My endo believes that I've become resistant to it and I do have a better result with prednisone, but I'm not ready to switch over entirely to prednisone.

So continue to take care of yourself Elena. Sounds like you've got A LOT going on and it's sooooo important to not overdo with this condition ... trust me on this. You do not want to burn up any adrenal reserve that you still have. You are so young, you've got your whole life ahead of you (although it sounds like you've already been through quite a bit) I would give anything to go back in time and do things differently which I'm sure would've prevented me from getting this sick. I was an overachiever in college and pushed myself with a lot of things. Too much exercise, poor diet, lots of coffee and sweets, not enough rest, etc. Anyway, I'm only sharing this with you because you sound wise beyond your years, and I wish I had known years ago how quickly things can deteriorate when you've got Adrenal Insufficiency.

Chillax and chin to the sky .. don't ever forget the power of the mind. :)

Best to u,
Mollie
I've had many of the same symptoms as you. And, yes, it is crazy frustrating. I was also at that point of feeling it really profoundly if I was a little late with dosing. Here's what has worked for me --

My excessive thirst and dehydration corrected when I started fludrocortisone. It made a huge difference, and I became so much more comfortable. I didn't see anything in your post about fludrocortisone. Are you not primary addisons?

The blood sugar problem is much, much better with a medication called metformin. I was waking up every night at 3am from hypoglycemia, and perspiring a little. It wasn't just that I was getting woken, but also, like you, I wasn't sleeping restfully. A little bit of hydrocortisone would allow me to go back to sleep, but this wasn't a real solution. Now, with the medication stabilizing my blood sugar, I can get by without the nighttime hydrocortisone. I tried supplements, sleeping pills, strategic snacks, etc. It was awful and nothing worked until we addressed the blood sugar. Btw, the severe insulin sensitivity/resistance only began after the bad adrenal decline. You probably already know that it is one of the most common additional problems. I think that it was really putting stress on my system and inhibiting my ability to get better.

Re. the perimenopause and other hormones, I've had mine tested and retested. At one point, after an adrenal crash, a lot of my hormones were showing up as negligible, or unmeasurable. DHEA, aldosterone, testosterone were all nil. We've been kind of gently supplementing. It is possible to do this.

Your post says you think that you might need increased steroids because of low sex hormones. I haven't read that. My doctors haven't said that. Please, be really careful with that idea.

Good luck. Hang in there.
I've had many of the same symptoms as you. And, yes, it is crazy frustrating. I was also at that point of feeling it really profoundly if I was a little late with dosing. Here's what has worked for me --

My excessive thirst and dehydration corrected when I started fludrocortisone. It made a huge difference, and I became so much more comfortable. I didn't see anything in your post about fludrocortisone. Are you not primary addisons?

The blood sugar problem is much, much better with a medication called metformin. I was waking up every night at 3am from hypoglycemia, and perspiring a little. It wasn't just that I was getting woken, but also, like you, I wasn't sleeping restfully. A little bit of hydrocortisone would allow me to go back to sleep, but this wasn't a real solution. Now, with the medication stabilizing my blood sugar, I can get by without the nighttime hydrocortisone. I tried supplements, sleeping pills, strategic snacks, etc. It was awful and nothing worked until we addressed the blood sugar. Btw, the severe insulin sensitivity/resistance only began after the bad adrenal decline. You probably already know that it is one of the most common additional problems. I think that it was really putting stress on my system and inhibiting my ability to get better.

Re. the perimenopause and other hormones, I've had mine tested and retested. At one point, after an adrenal crash, a lot of my hormones were showing up as negligible, or unmeasurable. DHEA, aldosterone, testosterone were all nil. We've been kind of gently supplementing. It is possible to do this.

Your post says you think that you might need increased steroids because of low sex hormones. I haven't read that. My doctors haven't said that. Please, be really careful with that idea.

Good luck. Hang in there.
Hi Mollie, thought I'd send you an update now that I've been on the DHEA for a few weeks. I definitely do feel so much better - far more energy, the sense that I can accomplish what I set out to do in a day, and happier. But like you, I can't be completely sure that it is the DHEA as I also started taking women's multi vits a few days after and that was when I noticed a difference. So perhaps I was just deficient in one of the vitamins that the multi-vit is giving me. Either way I want to continue on both the DHEA and multi-vits (I also take berocca and omega 3 depending on how demanding my day will be). Although maybe its just that my stressors have decreased a wee bit so maybe being happier is just a response to my life. Its interesting to think about.

Yes I'm surprised at how little HC I can be on too. I was always on around 30mg and drs thought I needed more than the average Addisonian my age and size cos I always had such dramatic symptoms if my dose ever dipped a bit lower - though we changed it almost every 3-6months for several years cos I also had symptoms of too little then too much, such a fine line. But it seems the older I've gotten, the less I can get away with for some reason (maybe just cos Ive stopped growing?). But its crazy how much of a difference taking one less pill makes to my attitude towards Addisons, let alone half my original dose, so I love it!
And as great as it would be if my adrenals still worked a bit, I don't think thats the case unfortunately. I can't remember what tests they were exactly, but a few months after being diagnosed, I went into hospital for a day of adrenal testing to check if they could stimulate any cortisol response and the results were that I definitely had primary addisons. Also one time when I was 13 or so, I forgot 3 doses in a row (night, morn, lunch) and I was in complete agony until the pills kicked in. And if I ever missed one, I got a quite severe headache, though that has subsided a bit depending on what kind of day I'm having. And like you, around the time the dose is due I'll notice a slight headache or something coming on, check the time and realise I'm due for one. In a funny way, its been quite a good reminder for me, especially when I was younger and not paying attention to the clock so much. Also I think that after 12 years of taking sufficient HC, I would have suppressed the adrenals so they would stop naturally producing any cortisol as thats what I've read happens. That you can cause addisons by being on long term cortisol etc. But at the same time, I sometimes wonder if it is remotely possible the adrenals could have recovered to a certain extent allowing me to reduce my dose (and wishfully dreaming of fully overcoming addisons and being cured haha).
Thankyou for your life advice, I don't want to slow down too much because I still want to live and I'm starting to realise what addisons limits me from, so I try not to let it limit me from living my daily life. Also its when I give myself a break and chill out that I start to pay attention to all the ways it is affecting my health (and therefore life) and thats when I start to feel a bit frustrated and down. And while I'm not slowing down in my life, I do take very good care of myself otherwise... I exercise (now that I have energy again yay), eat extremely well, dont smoke etc, try to have plenty of sleep, and the second I get sick I take extra pills, load up on natural remedies and tuck myself into bed.
How are things for you? Has anything got better? Have you researched ways to gain healthy weight through diet? I'm sure there are plenty of suggestions a little more reasonable than just "eat more". Types of foods, when to eat etc. Might help with your BGL too. I'm quite a believer in diet and getting a lot of anti-oxidants etc from food. I favour non-processed food which is much better to eat large amounts of.
Hope you are well :)
Elena





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