Hello all,
I hate sharing my whole life story all the time so forgive me if I try to summarize my case very quickly :) . I’ve had several problems starting back to 2003. I eventually got treatment in 2004, and after a year of a lot of tests, we finally nailed down all the problems. : Diabetes insipidus, hypothyroidism, adrenal insufficiency, and hypogonadism(low testosterone).

I had some really bad times and the chronic fatigue kept me in bed from the ages 24-26. Those years were a nightmare. I was even filing for disability thinking I was never going to get out of that rut. I was so close to accepting that life as my fate(and getting suicidal). Luckily, things started turning around, maybe due to time(healing some and balancing my hormones with meds) and better diet habits. Just last fall I was able to go from my 20mg cortef dose and I weened it all the way off in 4 months!

The lower I went and the more my adrenals took over the better I felt. I think I owe much of it not to the doctors but to my own searching. I found some amazing vitamins and adrenal supplements. Around the time I started to notice recovery from the chronic fatigue was when I started on my vitamin regimen. It was about 40 pills a day but hey, I’m not complaining if I see results!

The diabetes insipidus cured somehow in midst of it all(the cortef probably). Currently I am only taking injections for testosterone and thyroid pills. Although my doctor has been doing stim tests and my adrenal glands are not reacting much. Apparently I have a decent morning baseline, but under added stress they do not respond to the test – this is very unfortunate, obviously.
I used to exercise a lot, and I feel SO close to being able to be me again, but whenever I try to exercise, I can’t break through that glass ceiling and my whole body hurts for a whole week. My body doesn’t recover. I feel it is because my adrenal glands are not responding and this is what causes me to take over a week to recover from exercise.

Again, I’m not taking any cortef or cortisol supplementation. I would really rather not and hope they continue to heal, but it has been over 8 months since I have been completely off of cortisol and yet my adrenal glands are still not responding to the tests.

I’m hoping I can get in touch with somebody that has adrenal insufficiency that can or knows how it is possible to exercise. I fear I may need to take a permanent dose of cortef, but when I’m not exercising I feel better off of it then on it. What does that mean? Is there someway I can take enough when I need it? How do people with adrenal insufficiency deal with their insufficiency during exercise stress?

Sorry, this went longer than I thought. I don’t want to bog anybody down but if anybody has any ideas for me. I would really appreciate the help!!!

Jake if you aren't really stimming that is probably why you aren't able to exercise. You must be making enough cortisol to make it most times but not enough under extreme stress such as exercise. Make sense?

I agree with Jo about why you aren't able to exercise...it sounds like you make enough cortisol to get through a normal non stressful day but not enough to make it through any added stress like exercise. I hope you know that you could get into a life threatening position if your adrenals don't stim on their own...at the very least I hope you carry an emegency kit with you at all times. It sounds like you had some sort of injury to your pituitary gland maybe but if your adrenal glands aren't stimulating you need to be VERY careful. Taking cortisol orally is just not the same as when your body makes it on it's own and sometimes we just don't feel the same even after diagnoses and treatment (although many doctors say we should). Having said that...I still hope you are extremely careful and have a watchful doctor because needing cortisol and not having it is nothing to take lightly.

(grh)

Hi Jake,

Have you discussed with your DR's, or ever thought about doing like (Some)Diabetics have to do Before exercising - Take a "Bolus Dose" (so to speak) of Cortef 30 mins BEFORE begiing your exercising. Diabetics & Hypoglycemics have to do this w/ Carbohydrates - Eat a sugary snack 20-30 mins BEFORE exercise so your body will have the EXTRA Energy (and in your case Cortisol) it needs to burn.

I would start w/ a modest dose like 10 mgs 30m mins before, OR if you have an Inection kit & can inject your HC you could inject 15-20 mins before. However, you may not want to have to inject on a regular basis. Once you figure out approx. how much extra cortisol your body burns on an average workout, you could take it ONLY then, before your workout. Then also, if your still feeling REALLY bad for more than an hour or so afterwards, take an extra 5 mg. to see if it helps you to RECOVER. In time, with practice, you will learn exactly how much you need BEFORE a workout to REDUCE or ELIMINATE post-exertional fatigue.

Yes that makes total sense. That is what I believe the problem is. It is just I do not know anybody that exercises or knows how to deal with this. Most people with Addison's or adrenal insufficiencies that I have encountered do not exercise or just simply can't.

Although, recently I have found this: http://www.addisonssupport.com/

This type of thing is what I have been looking for. My doctors (I've had 4 endos) do not know anything about taking cortisol for exercise or how to manage this condition. There doesn't seem to be a doctor in all of Fort Wayne that really understands how to deal with this properly. They give me cortef and tell me to take it throughout the day, but have never had any input beyond that.

I need to know how cortisol works in the body better so I know when my body needs it. I understand the basics, but in order to possibly live an active lifestyle, how can I manage it?

I feel alert and awake, but my muscles are constantly in a state of soreness and fatigue. Every day feels like I ran a marathon the day before. I owe that to pushing myself to do a little exercise or yard work probably physically every time I feel 'okay'.

I understand, and my doctor has told me that if I ever got injury or anything serious, that I need to inform the hospital of my condition if I want to pull through.

I don't have a recovery kit, I have no cortisol backup plan. I've told my wife and family that if I am ever in the hospital, they need to tell the hospital of my condition (in case I am unable to).

If I was on a road somewhere alone and got into an accident and my family couldn't be contacted in time and the doctors didn't have an idea of my condition, I imagine that could be a potentially deadly situation. I should probably plan for something like that.

That is some good advice, thanks you guys.

Now, see, that is something I need to know. I haven't talked to anybody with adrenal insufficiency that knows how to maintain an active lifestyle, including my doctors.

That sounds interesting, and I knew there was something extra those with adrenal insufficiency had to do in order to maintain active lifestyles, I just didn't know what , the amounts, etc.

If we make between 15-20mg of cortisol on average an entire day, 10mg just to exercise isn't too excessive? I am a male, about 210ibs, 5'11 with a muscular frame(used to lift weights a lot). Would that mean I would need more cortisol than a 110lbs woman during a workout?

Questions like these are what I'm curious about. I need to better understand this. For the last year or two I've been trying to beat it and get rid of it permanently..but that option seems to be fleeting, so now I need to learn to deal with it.

The advice here is great so far, thanks a lot you guys!

Yes, Jake, I believe you would require more HC than say a 110 lbs. woman in most situations...but we are all so diffferent and our activity levels vary from day to day and sometimes we just need more HC to be as "normal" as possible.

The muscle cramps/aches could possibly be helped by taking magnesium tablets...I take it daily as do others.

Also, are you secondary Addison's? I know you listed DI and hypothyroidism as well as hypogonadism but I am not sure if you told us how you became adrenal insufficient. Primaries and secondaries vary in that primaries usually need fludrocortisone also. And low sodium can cause muscle cramps/aches.

Also, hypothyroidism can be very debilitating...is yours well managed.

When we first tested my ACTH was in the normal range, maybe a little high. Normal range maxes at 100 and it was at 103.

We believe I am secondary and my pituitary is reacting normally in that case. I do have several endocrine problems in different areas so my doctors said I was a unique case.

If my adrenal glands were normal, wouldn't the stim test get a good reaction from them?


I believe my hypothyroidism is well managed. He keeps it in a certain range and checks it every 3-5 months.


Another question is, everytime I exercise, I should take extra cortisol? For example, say I exercise in the day and take 10mg a half hour before. Then later that night, I plan to 'exercise' with my wife. Should I take 10mg more? On top of what my body produces, isn't that excessive?

If a normal human being exercied for 3-4 hours a day, could he/she have their body produce upwards of 40mg of cortisol for the day? I'm always told by my doctors how much cortisol is naturally produced, but I never got a straight answer on the difference of cortisol production between somebody that doesn't exercise and somebody that is extremely active.

Jake you will have to learn to gauge how you feel...if you feel that you are low on cortisol. We all do and you more so as you have only the little amount your adrenals are producing. Also, pace yourself...and also another thought, as you get more active and fit it may be less of a stressor to your body and adrenals...and you may need less cortisol to do the same amount of exercse.

And as to the stim test yes, if your adrenals we still functional they would stim. But you are on thyroid treatment. Were you on HC when your thyroid was first treated? Did you have any trouble with becoming adrenally insufficient taking the hormone? It is not recommended to treat hypothyroidism without first treating the AI as the thyroid hormones burn through cortisol. You don't have any problem taking your thyroid meds without HC? That is good that your thyroid is well managed...that can really make you feel rotten. :)

The website you found with Dusty is great! She is a friend of mine and is really really amazing. You would do good to thoroughly read her site.

Your adrenal glands and pituitary work on a feedback loop. The pit sends ACTH to the adrenals to work and the adrenals send a message back to the pit to say it did it's job. The ACTH also nourishes the adrenals and keeps them happy. When you are give a stim test you are given a dose of ACTH to see how the adrenals respond. Since your don't respond that means your adrenals are some how weakened and don't quite do their job properly. Now here comes the tricky part... if you supplement with cortisol on a regular basis for exercise or whatever than you could cause further weakening of your adrenals. I have asthma and allergies to every antibiotic. When I lived in Seattle the mold there made extremely sick all the time. I had to take large doses of steroids for the asthma and any time I had an allergic reaction to an antibiotic which I had to be on often for the lung infections I got from the asthma. Well after a time it weakened the HPA axis which in turn killed off my adrenals. If you interfere with the feedback loop it weakens the system. That is why whenever anyone is put on steroids for any reason they are tapered off so as to give the system a time to recover. So if you plan to regularly boost for exercise you need to be prepared that it could possibly completely shut down your adrenals.
I am concerned about you relying on a hospital to give you the necessary cortisol in an emergency situation....that could be a bit too long. If I were you I would at the very minimum carry cortisol pill with you where ever you go and take them if you are injured or vomiting. That's my 2 cents...

(grh)

Shelley

Hi Jake,

10 mg. MIGHT be too much, you MIGHT be able to do your workout on 7.5 mg. HC, but if you do at least a 30 min. High Energy workout, I would start at 10 mg. & see HOW you FEEL after that. Also keep in mind, in the BEGINNING, you might need higher doses of HC for your workout, BUT EVENTUALLY be able to drop it down to 7.5 and maybe finally 5 mg.

Everyone is different. I still work full time, and on really HECTIC days I need an extra 2.5 mg. to 5 mg. to get thru it. Trust your body, it will tell you what it needs. Once you are able to do a workout w/o being completely WIPED out after, stay at that level for about a month. Then SLOWLY, drop your dosage by 1.25 to 2.5 mg at a time (1.25 mg. is a quarter of a 5 mg. Cortef). Working out - A SERIOUS workout - IS A STRESSOR to a body. NORMAL people need their bodies to produce EPINEPHRINE during a workout. If you do not have ANY Cortisol storages, your body can't respond to that need for Epinephrine, or it draws from the stores necesssary for normal bodily functions, leaving you weak, exhausted & achey.

There was a young gal on here in the beginning who was (and still is) a gymnast! It can be done. And if the ONLY time you need supplementary Cortisone is when you workout, that's not so bad. Eventually, if your need keeps going down to like 2.5 mg Cortef before a workout, and ONLY if feeling really bad afterwards, another 1.25 or 2.5 mg., EVENTUALLY you might be able to get by w/o any, BUT it Takes a lot longer for the body to recover when you are VERY Physically Active on a regular basis.

I started taking my thyroid first out of all of my meds.

My doctor did a test and saw that my thyroid was underactive. Based on some information I received from an online forum, I asked my doctor to check my cortisol in depth because on the normal cortisol scale of 11-24, my cortisol level was a 12. On the low side of the normal.

We did a stim test and saw that my adrenal glands weren't responding appropriately.

So yes, I've been on thyroid about 5 months longer than any HC. Currently I have no HC but still take my thyroid.

You say thyroid hormone burns through cortisol? Hm, is it just the med or is it the thyroid hormone for everybody? That is interesting to know.

Awesome, but very unfortunate information Kathy.

I knew the steroid took the place of adrenal function and it could make you dependent on it, but I didn't know that the steroid can actually do damage to the adrenal glands.

I thought with my minimal adrenal function, if I just took the steroid in times I need it during exercise that my body would continue to support what it could and not worry or be relied on to respond to exercise stimulation.. but that isn't how it would happen?..

How much steroid did you take to cause your adrenals to weaken and shut down?

It seems like I'm in between a rock and a hard place. I can maintain my adrenal function which is a lot less maintenance than taking steroids and hope one day they rebound with the right diet and vitamins.. or destroy my adrenal function to live a normal life.

Dang, what a horrible decision to have to make. I've been thinking about this the last few days. I don't know if I want to commit to steroids yet and give up on my adrenals rebounding.. but damnit I want to be able to live my life and exercise or have intercourse without my muscles feeling weak and sore forever after..

Definitely something to think about.

Very good stuff Kathy. Thank you so much for that as well. That achey, weak feeling sounds EXACTLY like what happens to me after any kind of physical work out.

I've learned a lot from you guys already. Huge help. Combined, you guys know more than all three of my endos I've had. They obviously don't study up on this disease much for the rarity of it I presume.


I've been off of the cortef completely for 8 months. My doctor told me it could take a year sometimes to regain adrenal function.

If I could get some opinions from you guys, what do you think I should do? I want to exercise 40-50 minutes a day. I lift pretty heavy weights. Maybe cardio 3 times a week as well.

At this moment I really can't do anything. I normally feel pretty alert, it's all a muscle ache and weakness problems. I really, really don't want to lose my adrenal function because of how horrible I felt on cortef

What does that say that even a small dose of cortef every morning makes me feel worse overall than I do now?


Could I have enough for the morning and day to day activity, and the cortef pushes me over the limit and I end up having TOO much? Would that be why cortef makes me feel more groggy/tired? Even 5mg?

Anyways, thanks a lot you guys. Amazing help here! (grh)

I am going to say something here that could be a factor in how you feel on HC. It could be the Cortef...some people do not feel good on Cortef. There are generics available here. The one I use is Westward and I really like it. It must be the fillers that cause the difference we see in the HC's available. Some do better on one than the other.

What the doctor is telling you is for a "normal" person being given steroids and after tapering off it is usually a year before full function of the adrenals is obtained. You may not have normal function even after a year if your glands are failing or you have a pituitary issue causing the low function or sometimes the adrenals just do not recover from being suppressed by steroids such as those used to treat illnesses and the "normal' person is left with secondary adrenal insuffieciency.

What you describe as the achy, weakness could be lack of cortisol...your glands may be in a slow decline not fully failed yet but getting there...

Hi Jake,

Now first of all I'd like to start out with my "Disclaimer" so to speak! :lol: I am NOT a Dr, But I can say I've learned a lot from having this disease.

First of all, SMALL amts of Steroids Almost NEVER Shut Down Adrenal function. (IE: I am DEFINATELY Secondary Addison's. Mine occured from Excess Steroid Usage for Asthma, Allergies, etc. HOWEVER, I've been on HUGE Doses - 200 400 Mg. Prednisone, Dexamethasone & Medthylprednisone - MEDROL - given in lg doses in the ER - the 100 or more MG given VIA injection, and then MEDROL dosepacks to take home). And by the way, even at those MONSTER doses, it still too 40 Years for my Adrenals to shut COMPLETELY Down!

Hydrocortisone is THE CLOSEST to what our bodies produce (See Dr Wm Jeffries Book: Safe Uses of Cortisol.) He even recommends LOW DOSE HC usage over extended periods of time to "BOOST" the Adrenals to deal with Inflammatory Diseases such as Arthritis, Asthma etc. LOW DOSES of HC (NOT Pred, Medrol or DEX.) Key words being LOW DOSES, can help control inflammatory diseases w/o flares & w/o Adrenal Suppression.

I would HIGHLY suggest getting a copy of this book : Safe Uses of Cortisol by Dr. Wm Jeffries, I'll send you the name of publisher - cheapest directly from them. Online can run into 100's. I paid $39.95 or $49.95 direct from the Charles C Thomas Publishing Co.

So Supplementing low doses for workouts only Should Not shut down your adrenals. Now That being said, THERE COULD be another underlying problem that they haven't tested you for yet. AND Is your Secondary Addisons due to Streroid Usage, OR IS it Secondary to your Thyroid or possibly a Parathyroid problem??

If its from your Thyroid prob. you won't be TOTALLY UNDependant on steroids until you get that condition stabilized.

Also, try the Brand Name "Glades" 5 mg. tablets. As Jo said, some people have problems with the "FIllers" in certain drugs.

Basically, that is what Jo is also saying also in her email.

Also, IF POSSIBLE, pick your LEAST HECTIC days to exercise. Don't put MORE Physical strain on yourself on an already HECTIC BUSY day. ALSO, IN THE BEGIINING, Start with only 30 mins (or even 20 mins) and WORK YOUR WAY UP once your body begins to "ALLOW" the extra effort w/o making you miserable.

We all like to "PUSH" our bodies, but with this disease, THe Body PUSHES BACK!!

as long as you keep your doses LOW (5 mg to 10 mg at the absolute highest) and just "Pre-Workout" you should not have to worry about shutting down your adrenals.

Keep in mind however, if you keep working out W/O appropriate Steroid coverage BEFORE, and your workout is "Robbing" your body of it's circulating Cortisone (So to speak), you can actually CAUSE AI (Adrenal Insufficiency) by constantly using up all your Cortisol storage and forcing your body to "RUN ON EMPTY".

Also try drinking an Electrolyte Drink BEFORE your workout. Try to find a brand other than Gatorade tho' it's too high in sugar. You will sweat off any excess, but this will keep you from becoming Dehydrated (which Addison's by the way PREDISPOSES you to dehydration & electrolyte imbalances) which can ALSO make you feel Exhausted & ACHEY.

Possibly you could try a good electrolyte drink before workouts first - even w/o supplemetal HC beforehand, but keep that workout down to 30 mins at first, especially since if you haven't regularly been able to do your workouts, 40-50 mins right off the bat is way too much for a body that's gotten "UNConditioned.

I use a brand called "HydraLife" oral rehydration drink. Comes in a pkg (powder) mix w/ water & drink.

Good Luck Jake!

Addison's Disease/Penn State