February 13, 2017 at 7:45 am #10491
I’m in the healing process of recovering from stage 4/adrenal crisis that started on Thanksgiving day 2016. I took care of the 43 year stresses that caused it all, finally. (I had to eliminate my mother from my life, that was EXTREMELY difficult!)
With the help of my doctor & therapist and HARD work on my part with diet, meditation & constant positive affirmations etc…I’ve come through this journey in life fairly well, considering how SERIOUS it was. (I look back now and see all of the signs that led up to it, but didn’t know what it was at the time.)
Since I took care of the stresses that caused this, my body no longer needs the high doses of Hydrocortisone (Cortef) & it doesn’t like it!
[I started at 180MG a day & have weaned down to 115MG in 3 months-up & down along the way, from various unexpected stresses, been to the E.R. twice to get 100MG injections for those times].
Unfortunately I have to wean down SLOWLY from it I’m told, and learned the hard way to not wean too fast! When I take it I feel awful now, I feel better when I don’t take it, but know that if I stop, I’ll go back into adrenal crisis, which is even worse! I cannot take Prednisone as there’s something in it I’m allergic to, (plus I’ve heard it’s even harder to wean off of!)
I just find it hard to believe that there is almost no help or expertise in this field…It would be nice to not cry every day, or feel sick…ANY help or ideas would be greatly appreciated…February 13, 2017 at 8:41 am #10492
Hi Beetlybug. It’s interesting that you feel awful when you take the hydrocortisone now, and that you feel better when you don’t take it. That seems to suggest that you’ve made some progress, and that your body perhaps no longer requires the dose that you’re taking. Weaning yourself off, under your doctor’s supervision, sounds like a good plan.
If you’ve eliminated many of the sources of inflammation (stress, diet, etc), then your body probably doesn’t need those high doses of cortef any more.
As with most steroid therapies, you need to wean off slowly to allow your body to adjust. So it might just be a case of having a little more patience. Better to feel kinda awful from slightly too much hydrocortisone than to risk serious health problems from having too little!
Overall, it sounds like you’re on the right track.
Couple of other ideas – are you getting enough sleep, getting enough sunlight, taking any adrenal-supportive supplements? All these can help.February 13, 2017 at 11:39 am #10495
Sleep? What’s that? hahaha…Anyway, I’ve been told as long as I’m taking the hydrocortisone & going through this process, sleep will be hit & miss, which it has been. I go to bed around 7pm (only because I’m exhausted), sleep for about an hour or two, lay there for about an hour, sleep for another 2-4 if I’m lucky, then awake for a couple more, then I get another hour if I’m REALLY lucky. But I’ve been told not to stress about it, that the rest is just as important. What’s frustrating, is that I can’t get out of bed until after 6am when I take my first dose of pills, otherwise it messes everything up! Very frustrating, but nothing I can do about it at this time, I just lay there and do deep breathing or meditate, so no need to STRESS about it or my body will just need even more hydrocortisone!
I go outside several times a day regardless of the weather, but have been told to avoid vitamin D while in the adrenal recovery process. But I am taking 5,000 IU of Vitamin K & 1,000 Mg of Vitamin C, which is helping. I’m also in the process of balancing my blood sugar, which is a challenge, but I’m getting better at looking for the first signs of that, eating every 2 hours, low glycemic fruits 20-30 minutes before proteins helps with the digestive upset a lot. So does eating organic, gluten/sugar free!
Also, since my adrenals are fully suppressed, so is my immune system, so it’s very lonely not having visitors or family to visit, my doctor said “Don’t get sick!” Then I’d have to up the hydrocortisone even more for a stress dose!
He said no supplements until we get closer to waking my adrenals up, then we can support them then. My doctor is an MD, but studies mostly natural medicine, so I’m lucky as I can’t take hardly any medications at all.
I’ve lost 22 pounds, (which I didn’t need to lose), mostly muscle unfortunately, I may need physical therapy to get some of that back, but I WILL fully recover! I can’t wait until my new life starts!! Thank you for this website, it’s a life saver!February 14, 2017 at 6:41 am #10509
Getting outside lots during the day will certainly help your sleep patterns. Make sure you’re getting enough exercise too (lots of walking would probably be best in your case). Have you asked your doctor about using melatonin, on a short term basis, to help you sleep?
Fawne wrote an awesome article on sleep hygiene, which might help:
As for the weight loss, make sure that you are eating lots of healthy fats. Fats and protein will help with your blood sugar too. Foods like egg, avocado, coconut oil etc.February 15, 2017 at 11:31 am #10537
Thank you for all of your help! It means a lot….
I get outside every day, but am too weak to do much walking yet, other than around the house, my watch app says I walk about 2 miles a day, so that’s good, I’ll keep working at it, but don’t want to over do!
I meant I’m taking 5,000iu’s of Vitamin A (NOT vitamin K) on my last post. Also, I’ve been told that Vitamin D inhibits the absorption of the steroids & to avoid it until you wean off.
I am allergic to Melatonin unfortunately…I’ve tried all of those things on the sleep hygiene list & they help some, but I’m pretty sure once I’m off of the steroids it will take care of itself.
I was able to wean down another 15mg yesterday after seeing the doctor. I’m excited that my body is finally ready to get off of these steroids!
I’ve been eating all of those foods to gain weight, but I’m barely maintaining, it will all come back eventually, just have to keep a close eye on it for now.
One thing I’ve found that helps the muscle cramps is eating lots of protein & keeping my electrolytes high. I take 1 Tablespoons of “Selectrolytes” (you can find this online) in 16 ounces of water 2 times a day, it helps a lot.February 15, 2017 at 12:23 pm #10538
Good tips, thanks for sharing 🙂 Please do keep us updated!February 24, 2017 at 7:37 am #10658
Update: I have been able to wean down off of the steroids by larger amounts with my doctors help, (with lots of mental & physical discomfort, crying, rage, flu like symptoms etc…), but I was having those symptoms anyway, so we figured I may as well power through it!
I’m down from 180mg of hydrocortisone a day to 65mg a day – yay! I have to get down to about 30-40mg a day to feel “normal”, then wean MUCH slower after that, because that’s when my adrenals will start “kicking in” to help.
I will continue my gluten/sugar free anti-inflammatory, high protein/fat diet, (eating every 2-3 hours to keep my blood sugar as even as possible), along with herbs/vitamins for adrenal support, lots of water, stretching & light exercise when possible. And lots of rest & sleep when I can.
I am doing lots of positive visualization, imagining my suppressed adrenals waking up happy & healthy, ready to take on the role that the steroids were playing. This is quite a recovery process & hard not to get discouraged at times, but I WILL get through this eventually!February 24, 2017 at 7:58 am #10659
Thanks for keeping us updated 🙂
You’ve mentioned stabilizing your blood sugar a few times. Have you looked at a herb named Gymnema Sylvestre? Fawne and Dr Eric recommend it in their book. It helps to stabilize blood sugars and prevent blood sugar spikes. There’s been some research into using it for diabetes management:
If you do decide to give it a try, you should probably mention it to your doctor, especially given the other meds that you’re taking.April 19, 2017 at 9:29 am #11305
I’ve started taking an adrenal support supplement called “Adrenal Factor” that I got from my doctor, twice a day. My adrenals have thankfully woke up after being suppressed for months, they are doing about 40-50% of the work now! I’m still weaning off of the dreaded hydrocortisone steroid, I’m taking 22mg of it a day now & hope to be off of it in a few more months of weaning.
I’m still housebound, (it’s been almost 6 months), very weak & tired still, but am slowly improving thankfully.
This has been the hardest journey of my life, but it will be WELL worth it in the end!
I am ready for this to be over once and for all….May 18, 2017 at 7:11 am #11640
I have been off of the steroids for over a week now & feel better, (I had a sudden allergic reaction to them is why I had to stop weaning), but now I am having lots of withdrawal/detox symptoms which are no fun, not as bad as the side effects of the hydrocortisone though!
Does anyone have any idea how long the withdrawal/detox symptoms last? My adrenals have bounced back wonderfully thank goodness, so it’s not symptoms from them. The doctor said he’s never seen anyone completely stop taking the steroids from 12mg a day to nothing & have my adrenals do as well as they have, my body was very ready to be off of them completely! I’m still on the Adrenal Factor supplement, so I’m sure that helps.
Any ideas are greatly appreciated! Thank you…December 21, 2017 at 9:12 pm #13881
I have been desperate to find people that have done it and get help because it just seems like none of the doctors out there want to help or suggest many ideas and so I was wondering if you could tell me who your doctor is and where he’s located and also where there any other meds or things to assist with side effects like nausea and Pain and is the only way that you balanced I’m assuming the hypoglycemia since I know it’s usually hypoglycemia that we struggle with not high blood sugar but did you only control it by eating every two hours and also did you have anything to help if you had severe anxiety or panic and by chance have you had any dizziness or arrhythmias or some type of dysautonomia orthostatic intolerance and if so is there anything else that you have taken other than Hydro Cortizone to deal with those symptoms like maybe fludrocortisone?? pain and is the only way that you balanced I’m assuming the hypoglycemia since I know it’s usually hypoglycemia that we struggle with not high blood sugar but did you only control it by eating every two hours and also did you have anything to help if you had severe anxiety or panic and by chance have you had any dizziness or arrhythmias or some type of dysautonomia orthostatic intolerance and if so is there anything else that you have taken other than Hydro Cortizone to deal with those symptoms like maybe fludrocortisone??? Also did he have you tried any glandular‘s or rhodiola? Ashwagandha? Ginseng? Etc
Amino acid peptides?
Thank you thank you so much for telling us about your journey so many people are looking for people like youDecember 23, 2017 at 11:05 am #13888
I am hoping to get In touch with you and we can’t even exchange email addresses if that’s OK with you and I think the lady in charge of this website said it was OK? Or whoever responded to me in an email question I had asked if it was OK and I believe they said it was or they could help us exchange emails so I’m a little new to forums and blogs and technology but I would love to find out how you’re doing because we haven’t heard from you since May and that concerns me a bit but I just found this website and for him and I was really interested and excited to read your post. or whoever responded to me in an email question I had asked if it was OK and I believe they said it was or they could help us exchange emails so I’m a little new to forums and blogs and technology but I would love to find out how you’re doing because we haven’t heard from you since May and that concerns me a bit but I just found this website and for him and I was really interested and excited to read your post Thank you so muchDecember 23, 2017 at 11:06 am #13889
Grammar errors above
I should probably proof read my post as I am speaking into the phone and not typing so what I meant to say is we can even email but somehow it put can’t
We can!December 23, 2017 at 11:09 am #13890
Beetlybug im trying to respond to you, hope you are doing well please let us know.December 23, 2017 at 11:42 am #13891
Annabel you mentioned a supplement that is good for blood sugar specifically mentioned blood sugar spikes however do you know if it’s also good for “hypo” glycemic? I find that those of us with low or no cortisol who are unfortunately on steroids that it is low blood sugar I mostly deal with not high because we are trying to wean off or just low in general
Does this Gymnema Sylvestre work at keeping blood sugar up?
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