From CFS, Low Testo, Now Adrenal Insufficiency.. new here.

[Sypher7]

Hi all. I'm new here and thought i'd share my story.

I've had CFS/FM since i was 22 in 2000, when i got extremely sick with digestive problems (of liver/gallbladder/pancreatic origin). I lost weight to 43kg (5'9 male)

Since then its been pretty up and down over the years. I had a few better years during 05-07, and was able to travel again on public transport like trains and planes, but still very limited energy with needing to rest inbetween everything.

Always been a very allergic person, but since 2000 all my allergies and intolerances and chemical sensitivities became gradually worse. They diagnosed low testosterone in 2000, apparently I had zero.

This year my stamina and energy gradually declined, i got less and less able to do things. From the symptoms i had i suspected adrenal problems and started using licorice root powder. It really helped a lot at frist, but after 10 months on it, and always increasing the dose, it's effectiveness wore off and i started crashing hard. I ended up in ER 6 times in 6 weeks, shaking, freezing cold to the core, extreme muscle weakness, high anxiety, and severe orthostatic intolerance (crashing blood pressure on standing).

They finally did an insulin tolerance test, which THEY say is apparently the gold standard, better than the ACTH stim test, for testing adrenal probs. They inject insulin on morning fasting, and measure blood levels of glucose and cortisol over the next couple hours. Well instead of my cortisol rising as it should in response to the severe hypoglycemic attack the insulin brought on, it plummeted throughout the test.

Here is the result:

10am:
Fasting blood glucose: 4.7
Fasting blood cortisol: 471

10:30am:
5.7units rapid acting insulin

10:40am (+10min)
Blood glucose: 2.0

10:50am (+20min)
Blood Glucose: 1.2 (by this stage i was almost going into a coma, unable to speak and was
injected with sugar twice to bring me out of it.)

11:00am (+30min)
Blood Glucose: 3.9
Serum Cortisol: 358

11:30am (+60min)
Blood Glucose: 4.8
Serum Cortisol: 409

12:00pm (+90min)
Blood Glucose: 5.3
Serum Cortisol: 312

12:30 (+120min)
Blood Glucose: 7.4
Serum Cortisol: 250

The bottom of the result said the cortisol should have gone to >550 and kept going up after the hypo. Instead to deal with it, it used up whatever cortisol I had, but didn't initiate a stress response, indicating hypopituitarism.

I don't know why my body went this way. I assume its to do with the years of stress of constant pain and fatigue of CFS, and/or the HPA axis dysfunction got worse and worse.

Either way, im having a really hard time on cortisone, but have to have it. It causes alot of upper abdo pain, and have to dose it every 2 hours or so. I thought if i ever had to go on cortisone it would give me miracle energy, but it sure hasn't. It's just keeping me out of ER, which isn't much of an accomplishment.

Any opinions would be appreciated. Thanks. ~Chris.

[Sargovar]

Hey Chris, sorry to hear things have gone so bad for ya. Have you ever considered trying medrol in place of hydrocortisone? I hear lots of guys prefer it over HC because of its significantly longer half life and sustained action.

Originally Posted by Sypher7

Hi all. I'm new here and thought i'd share my story.

I've had CFS/FM since i was 22 in 2000, when i got extremely sick with digestive problems (of liver/gallbladder/pancreatic origin). I lost weight to 43kg (5'9 male)

Since then its been pretty up and down over the years. I had a few better years during 05-07, and was able to travel again on public transport like trains and planes, but still very limited energy with needing to rest inbetween everything.

Always been a very allergic person, but since 2000 all my allergies and intolerances and chemical sensitivities became gradually worse. They diagnosed low testosterone in 2000, apparently I had zero.

This year my stamina and energy gradually declined, i got less and less able to do things. From the symptoms i had i suspected adrenal problems and started using licorice root powder. It really helped a lot at frist, but after 10 months on it, and always increasing the dose, it's effectiveness wore off and i started crashing hard. I ended up in ER 6 times in 6 weeks, shaking, freezing cold to the core, extreme muscle weakness, high anxiety, and severe orthostatic intolerance (crashing blood pressure on standing).

They finally did an insulin tolerance test, which THEY say is apparently the gold standard, better than the ACTH stim test, for testing adrenal probs. They inject insulin on morning fasting, and measure blood levels of glucose and cortisol over the next couple hours. Well instead of my cortisol rising as it should in response to the severe hypoglycemic attack the insulin brought on, it plummeted throughout the test.

Here is the result:

10am:
Fasting blood glucose: 4.7
Fasting blood cortisol: 471

10:30am:
5.7units rapid acting insulin

10:40am (+10min)
Blood glucose: 2.0

10:50am (+20min)
Blood Glucose: 1.2 (by this stage i was almost going into a coma, unable to speak and was
injected with sugar twice to bring me out of it.)

11:00am (+30min)
Blood Glucose: 3.9
Serum Cortisol: 358

11:30am (+60min)
Blood Glucose: 4.8
Serum Cortisol: 409

12:00pm (+90min)
Blood Glucose: 5.3
Serum Cortisol: 312

12:30 (+120min)
Blood Glucose: 7.4
Serum Cortisol: 250

The bottom of the result said the cortisol should have gone to >550 and kept going up after the hypo. Instead to deal with it, it used up whatever cortisol I had, but didn't initiate a stress response, indicating hypopituitarism.

I don't know why my body went this way. I assume its to do with the years of stress of constant pain and fatigue of CFS, and/or the HPA axis dysfunction got worse and worse.

Either way, im having a really hard time on cortisone, but have to have it. It causes alot of upper abdo pain, and have to dose it every 2 hours or so. I thought if i ever had to go on cortisone it would give me miracle energy, but it sure hasn't. It's just keeping me out of ER, which isn't much of an accomplishment.

Any opinions would be appreciated. Thanks. ~Chris.

[fbcoach]

Hey Chris,
I have a similar experience,athlthough not quite as extreme. I was diagnosed with myofascial pain syndrome 15 years ago after having a cervical lamenectomy. The pain and fatigue have increased somewhat over the years. This what probaly caused my low test levels. I went on HRT almost 2 years ago. It seem to help much. I had my corisol levels tested using the saliva test and SLIM test. My saliva tests came back below normal, but my endo said my SLIM test was normal. I tried HC on my own and it seemed to help alittle, but I got scared and went off after several months. I am now seeing a Pain Specialist. They started me on Celesta. I haven't noticed anything as of yet (2 weeks). I go for more tests this week. Anyway, since CFS and FMS are related, I thought I would share some thoughts. Good luck in your search bro. Don't give up. With new advances in technology, it's just a matter of time.

[Sypher7]

Thanks alot guys, appreciated.

Sargovar: Yeah I've been reading alot and talking with people on adrenal insufficiency support groups, and there are quite a few who have changed over to medrol (or prednisolone) because of the symptoms i'm getting. I just feel that if i go that way it is less likely i'll ever be able to get off cortisones at all. I already am very dependant, was within the first week of using it and had to ramp up my dose really quick because i ended up in ER again from too low a dose & my body must have stopped producing straight away. In Australia we can't get medrol.. so if ppl change they go over to prednisolone instead, which is very similar to medrol, just not quite as strong. Medrol is 5x HC, and Solone is 4x strength. I may have to consider it because Im on a horrid rollercoaster all day, it just metabolizes so fast in me and when it's wearing off im screwed again and laying down shaking for an hour waiting for the next dose to kick in.

fbcoach.. interesting story. What is a SLIM test? do you mean a stim test? as in ACTH stim? Thats the standard for diagnosing adrenal probs, that or the insulin tolerance test as they did with me. How functional were you on HC? Better than before? I too am scared of being off it, but I am so bad that if i even try to skip one dose i feel like im heading towards a huge crash and will surely end up in ER. I hate being so dependant, but before i was on HC i have to remember that i was in ER once a week for 6 weeks, and freezing, shaking in the fetal position almost day and night. It's at least eased those symptoms, though i have to be on a pretty high dose. Maybe going over to longer acting steroid is what i'll need in the end. I'd do anything to be able to get out more again, ive been stuck at home for about 3 months now unable to go out and do things.

Thanks heaps. ~Chris

[fbcoach]

Sorry Chris,
I was in a hurry typing...just like now. It was the STIM test. The HC actuallly allowed me to workout without much pain. It also gave me some energy. It wasn't a miracle drug, but I definitely noticed a difference. Have you looked into any SSRIs OR SNRIs?

[JanSz]

It is by now established that you need adrenal support, prednisolone.
If you figure out proper dose just stay on it and do not worry how long you are going to be on prednisolone.

You mention very low testosterone, digestive and alergy problems in passing.
Are you taking care of those problems, how?

How is your thyroid?

When you are posting test results, it helps if you specify analyte name, value, units, range.

Good luck.

[Sypher7]

Originally Posted by fbcoach

Sorry Chris,
I was in a hurry typing...just like now. It was the STIM test. The HC actuallly allowed me to workout without much pain. It also gave me some energy. It wasn't a miracle drug, but I definitely noticed a difference. Have you looked into any SSRIs OR SNRIs?

No probs thought that's what you meant. Thats good.. so you haven't been back on HC since? Yeah for many it does make quite a difference in many aspects. It definietly got me up from rock bottom, but i have a fair way to go yet, especially before i'll be able to do any sort of training! Im determined tho and want to get back to it. As for SSRI's, yeah i've tried a few of them, and effexor. Many really dont agree with me though, horrid initial side effects that put me off. I wonder sometimes though if something like celexa or lexapro would be good.. if i got past the initial side effects (severe nausea and shaky nerves). Aparently these effects can pass, but the're so strong in me that i dont get past 2-3 days.

[Sypher7]

Originally Posted by JanSz

It is by now established that you need adrenal support, prednisolone.
If you figure out proper dose just stay on it and do not worry how long you are going to be on prednisolone.

You mention very low testosterone, digestive and alergy problems in passing.
Are you taking care of those problems, how?

How is your thyroid?

When you are posting test results, it helps if you specify analyte name, value, units, range.

Good luck.

Hi JanSz, thanks for your reply. Yes it is very established that i need adrenal support which is why im on hydrocortisone. I may very well soon try prednisolone as the HC is just too short acting. Will be an interesting trial to see if it lasts or gives any better energy etc.

Yes i have been on Testogel for many years now. 3 on the gel and 5 before that on andriol caps, so that is ok. Im working with some new integrative practitioners and a nutritionist to try work out the CFS/FM digestive and allergy probs. Im guessing working on all these at once is the only way i'll really see improvement overall.

They say my thyroid is "fine" but im going to get it retested with a local GP because i dont trust it is completely fine. They didnt even run free T3 or RT3, so will get those repeated soon.

Thanks, ~Chris.