|Hydrocortisone Use in Adrenal Fatigue: Is it really as good as "they" say?|
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.
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.
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.
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?