Wednesday, April 20, 2011

Rant About Hydrocortisone Use in Adrenal Fatigue Patients

Hydrocortisone Use in Adrenal Fatigue: Is it really as good as "they" say?
Today I have decided to rant about using hydrocortisone in those with adrenal fatigue, CFS and any of those non-descriptive syndromes or illnesses.

I have finally had enough of the nonsense and need to speak my mind.

When I started this blog, I was very naive and had no idea what I was getting myself into. When I did research about adrenal fatigue, all of the websites made it seem so easy. Just take some "adrenal support" and you'll be bouncing back like new in no time. Yippee!  I can tell you first hand, they were quite WRONG. Over the years I have realized that these websites paint a very happy, cheerful journey, but in reality it is a long painful journey. They may not willingly know, but they have started a very scary movement of people, telling most to skip going to endos and simply seek a natural doctor who is willing to prescribe HC. Some of them even suggest self-treatment, which is a whole other topic.

The testing recommended usually includes a 4x daily saliva cortisol and maybe a serum AM cortisol. Not many are testing ACTH and nearly NO ONE in the adrenal fatigue community are getting ACTH stimulation tests. Some argue since endos are bad, that it's ok to skip getting the ACTH stimulation tests. Yes some endos are idiots, but that does not mean you should avoid their testing. Especially when you are talking about going on a steroid, which could be for the rest of entire life. Once you have STIM test results those can be interpreted differently by a more open-minded doctor if the endo you see is a jerk.

If you have found my blog, it is important to understand that going on hydrocortisone is a big step. This is not something to take lightly and those who claim adrenal suppression does not occur on low doses are flat out wrong. They are simply repeating nonsense that has been made up out of thin air. One individual in particular seems to be "credited" with a lot of the adrenal fatigue information. He came up with theories that sounded pretty good and those ideas were repeated over and over again on forums, message boards and on yahoo groups. I used to believe him too, so I am guilty of being suckered in as well. Years ago he was asked where his information originated from, he would refuse to say or insisted it was in endo books that are no longer in print and do not exist. I find that hard to believe today especially because Google books has just about every book listed on there. If this information existed at one time, why was it not repeated in later editions of these so-called endo books? Endocrinology books do not simply disappear.

I tell everyone to question everything they read (even what I say), so all of this adrenal fatigue information is no different. Regardless of how much it "makes sense", you really need to find a legitimate source if you plan on following advice. Remember that a lot of the information on these sites is only from personal experience and if you follow it, you are doing it at your own risk. I'm kicking myself every day for not getting that stim test done.

Very very few people with adrenal fatigue just take some "adrenal support" and feel better. Usually on the forums people are messing with dosing for months, if not years. They have been made to believe if they aren't feeling 100% on hydrocortisone, then they must need thyroid meds, then sex hormones and some even go on growth hormone. So what used to be "adrenal fatigue" has now become hypothyroidism and hypogonadism. Great! If for some reason you ever need to see a mainstream doctor, they will question every thing you are taking and quite honestly for GOOD REASON.  Did you have any tests that even show an adrenal problem?, a thyroid problem? or a sex hormone problem?

If none of those treatments above seem to work out for you, then you are in big big trouble. These are the only 3 body systems that the adrenal fatigue community believe in. They completely block out everything else unless of course it's ferritin, B12 or Vitamin D. Because you know those are the only 3 vitamins your body needs. (tongue in cheek here) This is why I have become quite frightened and pissed off at the entire natural adrenal movement. They get you on all of these medicines and then have no advice for you when it does not work...Remember YOU are on your own, no matter what a forum moderator or forum goer tells you. It is your body.

You are made to believe going on "adrenal support" is going to be your fix and then years later you are looking back, asking yourself what the hell happened?

All of the websites or groups based upon this particular person's information, use each other to verify the other is accurate. Some good meaning people (who are just repeating what has been said for years) will say that what everyone is doing is safe because of Jeffries' book.  I have that book, but admit I have yet to read it from cover to cover, but most do not realize, Jeffries performed Stim tests on every single one of his patients. He was not using hydrocortisone like some people have assumed.

What Really Is Adrenal Fatigue?

The idea that adrenals get tired is complete and under bullcrap. If adrenals got fatigued then Cushing's Disease would not exist because the person's adrenals would simply stop putting out cortisol. There has to be another underlying issue here for your adrenals to become "fatigued". Those in the adrenal fatigue community most likely have HPA (hypothalamus-pituitary-adrenal) dysfunction. I'm beginning to believe there is an underlying cause for this and HPA dysfunction is merely another symptom of a larger problem.

Even though Hydrocortisone (HC) is considered the "treatment" for adrenal fatigue, are most ready for the responsibility?

Most people in the adrenal fatigue community have absolutely no idea the consequences of taking HC. You hear them say stuff like, "you take HC to support the adrenals", but that is not accurate at all. HC does not support the adrenals at all and no matter what dose you are on, eventually you are suppressing the adrenals. The question is not IF you are suppressing them, instead you have to wonder HOW MUCH you are suppressing them. Most people with adrenal fatigue have been given the impression (from these forums and websites), that taking HC is easy and there is nothing to worry about. Once again WRONG.

You must wear a medic alert bracelet for the entire time you are on hydrocortisone. In some cases this could be the rest of your life. You must have ICE (in case of emergency) papers in your purse and vehicle at all times. You must have an injection kit prescribed to you in times of emergency. By going on and staying on HC, you essentially make yourself adrenal insufficient, so you must stress dose for illnesses, travel and surgeries.  Adrenal suppression does not happen right away, but eventually even after a relatively short course it has been seen. This study showed only after 12 weeks of HC, there is adrenal suppression. It was reversible at this stage, but how many of those visiting the adrenal fatigue forums are being warned about this? I can tell you from what I have seen over the past 3 years, NONE OF THEM. Most of the websites will say up to 40mg of HC does not suppress the adrenals and there is nothing to worry about doses below that amount. Clearly that study linked, proves otherwise. This is another study done on those with Rheumatoid Arthritis that showed pretty much the same thing. 

Please do not confuse my rant against the use of HC in Adrenal Fatigue with those who have Addison's Disease, Congenital Adrenal Hyperplasia or LOCAH. These are completely different conditions that warrant HC treatment. NO questions about this at all! If you have a STIM test that show poor functioning adrenals (typically <20 response to a stim test), then you have no choice but to go on hydrocortisone for life. Hydrocortisone by itself is not a bad thing and it has helped many people become active and lead extraordinary lives (Dusty Hardman comes to mind here. I have her Addison's blog linked on the side bar).

I am just upset with the adrenal fatigue community that pushes HC like candy. There are many sick, desperate unsuspecting people on these forums and they do not know what they are getting themselves into. One woman on the adrenal yahoo group was mislead by a doctor and found herself on nearly 60mg of HC daily. She is now suffering from high blood sugars and is trying to wean down as fast as possible. I just hope she hasn't done permanent damage on those doses!

Even I am stuck on hydrocortisone now. Why? Because I was under the impression that it was NO BIG DEAL. You can wean off of it any time you want! etc etc. Well they were flat out wrong. It is a big deal and without a stim test I question my hydrocortisone use on a daily basis. The attempts of weaning down have been pathetic and I will likely try again in a few weeks to see what happens. If I had had a STIM test done, then I wouldn't be torturing myself. If I have true Addison's (which I think is possible), then I would not even think twice about it and just go on. But since I did not have that STIM test done, I will forever wonder what was truly going on.

Please if you have adrenal fatigue with low saliva cortisol results, do some further digging. Do not just sign up for HC because you want a quick fix. There is a very good chance it will only give slight improvements which may not be worth the risks of long term adrenal suppression. Many of the posters on these forums are still sick and a small group cannot lead normal functioning lives. I have found over the years, many of my "adrenal-like" symptoms have nothing to do with low cortisol at all. I suspect lots of people are trying to treatment symptoms like this with HC.

Here are some excellent links that everyone should read if you are considering going on HC for adrenal fatigue. Are you willing to take the risk?

http://www.medscape.org/viewarticle/734542_4
http://jcem.endojournals.org/cgi/content/full/jcem;91/3/793
http://www.bioscilibrary.com/resource/summerschool/2004/ss04/ss04_arl.htm

18 comments:

Sherry said...

Gahhhhhhhhhhhhhhh! I have a similar rant.

My saliva (and urinary) cortisol levels were low so my doc said "a trial" wouldn't hurt. Admittedly I felt a ton better (20-25mg of HC). I was one of the lucky ones who could wean off - I do feel like crap right now, but I weaned primarily because I need more testing this diagnosis of "adrenal insufficiency" probably won't take me far! (never got ACTH tested). I'm hoping to get to a big University for pit and adrenal testing but I am dreading telling them that I've been on HC previously because "of my saliva results."

Birdlady said...

Hey Sherry!

Well at least you actually felt better on it. haha! I feel somewhat better on it too, but it doesn't fix my main issue with heart rates and heat intolerance. Blah!

There are many who feel worse or nothing at all and continue to increase their dose until they are taking way way too much steroid. You may really need HC and as I said, I'm not against it in people who really do have adrenal insufficiency or Sheehan's Syndrome. However I agree getting ACTH checked and a stim test is a good idea. That way you are more willing to accept the diagnosis and then other doctors won't question it either.

I'm sure the University can at least order tests and then you can take those results to any endo you like. Not all endos are equal.

I'm so jealous you could actually wean off of the HC! haha

Sherry said...

Yeah, the wean was not fun. I think I did 2.5mg less every 10-14 days. So it took a good 3 months. And I did feel like crap throughout it (still do) but I desperately need these dang tests!

But I have a question - and I am not seeking medical advice, more along the lines of "how do things work" and I was curious if you had insight.

I know *many* people with adrenal insufficiency have low BP...but I'm curious if you stop making as much cortisol, can your body start producing large amounts of epinephrine when you get stressed instead? Is that the mechanism?? I have high BP with low cortisol. I don't think HC increased my BP as it's been high for years.

Birdlady said...

Sherry,

I really don't understand the whole mechanism behind it. I think it's a lot more complex than simply an increase in epinephrine or norepinephrine. It makes *sense*, but I know taking enough cortisol doesn't actually stop the norepinephrine response from my body. My POTS seems to be related to inappropriate triggers of NE, so there has to be something else to all of this.

lynn said...

I feel better on HC, but am so angry and pissed off with being led up the yellow brick road without testing. I once had a high 17 OH level, but that is ALL.

I was put on HC on the basis of a saliva test, which is NOT enough. So yeah, I probably have LOCAH, but how will I ever get a dx now? I am so tired of being lectured and told to wean off HC, no matter how ill it makes me. If I had had a comprehensive LOCAH screen and a STIM before I was put on the SITM, this would not be happening.

I no longer frequent those forums much anymore. It's all a giant experiment for people like me and now I am left stranded not knowing WTF is wrong with my adrenal glands at all.

It would have been so easy to STIM me. Why don’t these docs just do one STIM and let it be then?

RFW said...

Dana (and everyone else) - we have a very similar situation and I would love to compare health histories. How are you doing now?

Are any of you off the HC yet?

Please contact me!

My email address is:

ready for what 7 @ yahoo . com (no spaces)

Birdlady said...

Hey RDF,

I am still on HC and at this point in time, I am content on staying on it. My multiple attempts trying to come off of it has not worked at all! haha I have other health problems besides the adrenal issues, so I'm still trying to figure everything out.

lynn said...

I am still on it. It really did cure all the adrenal symptoms I have had all of my life. I feel good on it and haven't had any dosing issues. My only issue was the lack of an official dx.

However, I have a good endo now and he seems happy to officially diagnose me based on my original very basic testing, my symptom elimination on HC, my previous symptoms and my current blood tests.

I would strongly advise against saliva testing - STIM testing is what is needed for a proper diagnosis.

RFW said...

Thank you both so much for letting me know! This has truly been a nightmare. I was diagnosed with a thyroiditis (it makes you hyper, normal, hypo, and then 80% supposedly recover within 12-18 months and end up fine - oh, until it comes back!).

I just passed my 18 month mark and truth be told, I kind of feel worse now than I did a year ago. I have severe exercise intolerance. I have been off thyroid meds since 08/26/11 because my doctor put me on a lot of cytomel (15 mg) and I felt like I had a painful electric shock of adrenaline running through my veins. I feel that way whenever I get on even a little T3. Question: Do you know if unrefreshed sleep is a symptom of hypo or adrenl fatigue?

Below are my latest labs. Do you think I need to be on thyroid meds and/or adrenal support? I know you may not rely on saliva testing, but what were your results so I can compare mine. Were your numbers better or worse than mine? By how much?

I am honestly on the couch all day unless I have to be at work or the grocery store. This is no way to live. Please offer any advice you can. Thank you.

12/22/11 TSH 2.25 (Range: 0.40 - 4.50)

Free T4 1.0 (Range: 0.8 - 1.8)

Free T3 3.1 (Range: 2.3 - 4.2)

Thyroid Antibodies (ATA, TPO) NONE

___________________________________________

24 HOUR SALIVA TEST RESULTS (Date: 10/30/2011):

DHEA is 485.72 pg/ml **HIGH** (range of 106-300 females)

Cortisol Morning is 16.43 nmol/L **WITHIN RANGE** (range 5.1-40.2; optimal range 18-35)

Cortisol Noon is 4.96 nmol/L **WITHIN RANGE** (range 2.1-15.7; optimal range 6-12)

Cortisol Evening 1.12 nmol/L **LOW** (1.8-12; optimal range 4-8)

Cortisol Night <0.28 nmol/L **LOW** (0.9-9.2; optimal range 2-6)

___________________________________________

Cortisol Testing (Date: 11/16/2011):

A.M. Cortisol --- 22.7 HIGH (Range: 4.0-22.0 mcg/dL)

Cortisol, LC/MS/MS, SALIVA --- 0.04 (Range: 10-11 PM: < OR = 0.09)

lynn said...

RFW - So sorry that you are going through this.

When you were diagnosed with thyroiditis, did they say what type? Was it Hashimotos or post partum or another type? In your shoes, I would feel I needed thyroid supplementation yes. However, the fact that you cannot tolerate it suggests something else is up. Or maybe you just weren't on enough to suppress TSH? Most people with thyroiditis need a suppressed TSH to stop the attacks.

Your saliva tests are low, yet your a.m. cortisol is high. So the only accurate way to figure out what is wrong is to get a STIM test. That way you can see if it is adrenal dysfunction that is causing your inability to tolerate thyroid.

Also, I had to go off my thyroid medication when my iron was low, as I couldn't tolerate it at all. I seem to lose iron pretty easily, so always have to keep an eye on it.

I'd suggest you check out the addissonssupport.com forum. It is filled with a lot of smart and helpful people, who do not try to present theories as facts. :)

Birdlady said...

I also recommend checking out Dusty's forum/website. I have her blog on the left hand side, but her forum is
Addison Support Forum We both post over there!:)

I should have added that HC also took away my adrenal symptoms immediately. However I also have POTS which can muddy the waters. Many POTS symptoms are easily mistaken for low cortisol symptoms, so it took me many many months to figure that out. Even though the HC did wonders, it unfortunately did not take away POTS. :( I cannot exercise either and I do very poorly in the heat. I also cannot tolerate thyroid meds. It just aggravates my POTS too much.

You can see my adrenal saliva results here in these two posts.
Results from 2007
Results from 2009

InalienableWrights said...

Read "safe uses of cortisol" you can get it through the inter library loan

InalienableWrights said...

Read "safe uses of cortisol" ---

Dana said...

I specifically mentioned the safe uses of cortisol book in my post. ;)

Movimento Passe Livre said...

I'm thinking about trying HC since I have tried natural supplements with very little success fo about six months.
I had saliva test (low cortisol all day, mainly at morning).
Ok, better doing the stimulation ACTH test first. But if the test shows that the problem is not on adrenals, which is the usual therapy? If the test shows the adrenals are able to produce enough cortisol, what is to be done?

Kay Smith said...

Hmm I don't like regular doctors as they don't help me so seeing an alternative medicine Dr is most helpful. I can't imagine what any endo or conventional Dr can do for someone with adrenal fatigue. Adrenal Fatigue may not be as such for all but for me, I have it. I am on adrenal supplements, vitamins and am slowly feeling better after 3 years. This is definitely thanks to my holisitc Dr so I'm actually all for HC as I know someone on it right now and they have been on it for 5 years and have their life back so don't feed people lies just because it doesn't work for you. You should just say if it doesn't work, search elsewhere. My holistic dr is actually against HC as he believes it doesn't really do as much as supplements. I am telling you, I have felt crap for years and when I started supplements, I actually slept through the night more (I used to wake up 20 times, I now wake up 10 times), I lost weight, my brain fog isn't there as frequently AND I have one good day a week where I feel almost normal. Supplements work for most people and it's the healthiest option as you can't expect and overnight recovery. You seem to be looking for an instant fix and sorry but that's not going to happen. If you researched enough, you'd see that it's a process, everyone suffering from adrenal fatigue knows this. I'm a member of several forums and websites dedicated to helping people with AF and all their information (doctors included) talk about how it may take years to recover. I have no idea where you found out it won't take long as all of us know it will take a while. You don't get adrenal fatigue over night so you can't get rid of it over night unless your body just decides to miraculously heal itself in a day.

I'm still exhausted out of my mind most days but my dr is a legit help to my body and he actually healed many hundreds of people. Maybe you just didn't see the right alt dr as some don't know what they're doing but mine does. I took a saliva test/blood test etc and my vitamins are LOW and my cortisol/hormones are LOW/HIGH by a severe degree. So I'm also taking progesterone cream and it helps. I used to not have much of a period anymore and was headed for PCOS from estrogen dominance and he helped me so now I'm not at a high risk.

I think you need to just realize again that not everyone is you so what doesn't work for you, will probably work for thousands or millions instead. With chronic exhaustion as a symptom, there are hundreds of treatment plans out there. You just need to try to find one that works. Yes, that's hard. It took me years to see a holistic Dr as endos /conventional drs don't do a thing for fatigue.

Anyway good luck to you. I see myself healed in a years time thanks to my holistic Dr and even though I didn't take HC, my friend who is on it like I said, they have their life back so don't ever tell people not to take it if it may work for them. If my friend wasn't on it, she would be dead.

Sharon said...

My first endo wouldn't even test cortisol. He just said, 'Your thyroid numbers are ok and your are not diabetic. Keep researching and maybe you will figure it out.'
And he walked out of room. I was shocked and devastated. I knew I was very sick and felt it was hormonal in some way.
I went to numerous doctors and medical profs looking for help over 18 months. I have always eaten fairly healthy and been very active. Whatever was/is wrong brought my life to a skreeching halt. I tried different diet changes, got allergy testing, tried different supplements, got innumerable saliva, stool, and blood testing. ALL my hormones were in the tank, but NONE would do anything but natural stuff if anything. I could barely live my life, some day not at all.
When I would mention HC, all were completely afraid of it, but NONE mentioned ACTH stim test. I read about it.
I could not take my thyroid meds or I felt worse(I was hypothyroid and on meds for 20 years prior). I could not take any hormones, or I felt worse. I could not go on like I was. I knew there was a problem but no one knowledgeable enough or gave a rat's a$$ to help. So, I started HC.
I am not completely better, but I can function and halfway enjoy life again. I am not sorry I started HC or that I may have to take HC my entire life. However, I am sorry that our medical community SUCKS and does not want to help or care that you can't hardly function. They just poo-poo you like you are some hypochondriac seeking attention only because they are lazy and incompetent. They don't want to dig any deeper or research when it is not a typical easy case.
I am not sorry one bit. I tried everything I knew to do. I researched every possible moment and I spent thousands and thousands of dollars over a couple years trying to get better. HC was a last resort and I researched and researched only because no dr would help. I am VERY happy I did. There is a lot of help out there but you have to use your brain and common sense too UNLIKE most doctors nowadays. They seem to just want an easy paycheck and to hell with the patient.
I wish I knew what caused my issue and I continue to search for an answer, but I am so glad I don't feel like death anymore. I really was thinking I would go to a nursing home at age 50. Very thankful for my brain and HC and all the helpful people on forums and groups. Without all that, I feel I would've been committed to a nursing home by now and drs wouldn't have cared less that it was all treatable.

I respectfully disagree with your post. You need to be condemning the medical community because if they were doing their job, the need for self help groups and forums would be very slim.

William Osterberg said...

MDs are necessary at times but they always end up letting me down. Way back in 1990s I started having chronic fatigue symptoms and an immunologist could not find anything. My regular MD actually laughed at me when I refused to believe 'there is nothing wrong with you.' I have never forgotten it. I ended up taking antidepressants (Zoloft then Paxil for about 25 years). We now know that these drugs cause sodium depletion (look it up). End of June 2016 I end up in an ICU with sodium depletion and a serious pituitary conditions is found requiring surgery. Can any MD convince me that 25 years of SSRIs had nothing to do with my pituitary problem? Rhetorical question!
I started taking both thyroid and testosterone supplements about 10 years ago. After my June trip to the ICU I was put on HC, at first 40mg per day. A second endo said 40mg was more than the body produces and cut me back to 20/5. I cut myself back to 5/5. Three months later and a second cortisol stim test has not been done; I will have to wait another two months. She also decided to see if my testosterone production would pick up on its own. Another experiment on me. Finally, for the first time since 1991 I am not taking an antidepressant although surgery has depressed me seriously. None of the 4 MDs with whom I communicate can say whether it is safe for me. One said 'you can probably get away with it.'
Wow. Now that is convincing.