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Addison's Disease Message Board


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Hi there,

So the Title of this Thread pretty much says it all, as these are the things that are standing in the way of my functioning, and have resulted in my inability to commit to any sort of a job. I'm ready to give up and do not find that doctors are of any help. I think that unless you are living with Addison's or Adrenal Insufficiency, you have very little insight into how difficult this condition can be to manage. Well, I know this isn't the case for everyone, but I seem to have a lot of other issues stemming from Adrenal Failure; hypoglycemia, chronic thirst, inability to gain weight, difficulty sleeping & very difficult mornings, depression, etc.

So my question is, do any of you wake up in the middle of the night with low cortisol? Then take cortisol, and wake couple hours later (it's morning now but feel run over or like you've barely slept).. and basically can't get out of bed until 11 or 12, and still don't feel like it's time to get up, other than I am now in need a something for blood sugar, and TONS of water.

Long story short, I don't start feeling "normal" until late afternoon, and my day revolves around drinking lots of fluids and eating very frequently due to low blood sugar.

I really need some advise about the nighttime. I take my last dose at 9p.m in hopes of it getting me through the night, but at the same time, this can be stimulating late and night and then I can't get to sleep. I've also thought of increasing my eve dose a bit to try and get through the night, but again I think I will be overstimulated and unable to get to sleep. Starting to feel like an uphill battle so thought I'd see if anyone has any thoughts or suggestions.

I would GREATLY appreciate it...

Sleepless and Fatigued in San Jose...

Mollie
Try magnesium supplements to help get to sleep, its working very well for me! And have you thought about asking if you could try prednisone instead of hydrocortisone? Its longer lasting so maybe will keep your cortisol levels up until morning. Also could try having a drink bottle of juice by your bed for mid night/early morning sugar boosts. The other thing is that it might be nothing to do with your dose at all, and maybe another condition - anaemia? chronic fatigue? etc I'm having similar experience to you with regards to sleeping - cant get to sleep, cant wake up, not fully functional till arvo, but I think its from something else, not my med dosage. Taking away my nighttime dose of fludro and hydrocortisone has helped in some strange way though.. Just some thoughts! Best of luck :)
Elena & Emma,

Thanks so much for your responses. I'm already doing what both of you suggested.. I do the before bed snack, and I also take prednisone for my last dose, given it's longer acting properties. It's just a rollercoaster. My sleep, energy, and mood are all of the map it seems. This has all gotten A LOT worse for me over the past year because now I'm deep in the throws of perimenopause.

I'm not sure of your ages, but are either of you in perimenopause or menopause, or have already gone through? I'm 42 and with the decline of sex hormones, and no adrenal function to help out here ... very very difficult.
Would love to hear from anyone on this - as my doctor is fairly clueless. I've done quite a bit of research and from everything I've read, it says that steroids ought to be increased when sex hormones are declining, or when on hormone replacement therapy.

Thanks again.

Sincerely,
Mollie
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 :)
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.
I don't have diabetes. My insulin resistance, blood sugar problem only got bad after the adrenal insufficiency. And, I would only get low blood sugar from fasting (ie., between meals, overnight). From what I understand a diabetic can have the insulin changes at any time, and it is quite different.

I read the same thing about Metformin lowering blood sugar and thought the same as you - that my blood sugar is already too low. Apparently, a lot of the bad symptoms are from the rapid change/drop not the absolute level. The effect should be that the Metformin stabilizes the blood sugar.

I felt like I was in this really bad situation with the insulin sensitivity putting stress on cortisol, so it couldn't stabilize. I couldn't get better; I didn't sleep well. After the Metformin worked, I stopped having the cortisol ups and downs, and I've been able to improve.
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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