A guy’s story: scaring the hell out of him about being on HC cortisol!
(This page has been updated to the present day and time. Enjoy!)
Several years ago, a large percentage of thyroid patients on yahoo groups like NTH were figuring out that they had adrenal fatigue, aka low cortisol, from years of adrenals working overtime due to the inadequate TSH lab test, or being on the lousy T4-only medications like Synthroid, Levoxyl, levothyroxine, Eltroxin, etc.
Not only does low cortisol keep desiccated thyroid from working well, it also causes all sorts of angst with paranoia, depression, anxiety, easy anger, sensitivity to light and/or sounds, reclusiveness, sleep issues and more.
First, patients discovered the importance of using the 24 hour adrenal saliva test rather than blood or urine. Blood cortisol measures both bound and unbound cortisol, and we noticed in some, it could cause levels to look high (when saliva proved it was low as did symptoms), or vice versa.
When low cortisol was confirmed via saliva testing and symptoms, the treatment was using cortisol, aka hydrocortisone, to give themselves back what their adrenals were no, to allow thyroid hormones to reach the cells. If saliva results showed only moderately low cortisol, adrenal cortex was used. The right amounts of cortisol was achieved via doing one’s Daily Average Temps.
And success was achieved!
When all other issues were discovered and treated, ranging from being on a better thyroid treatment, to bringing iron and B12 back up to optimal levels, to bringing high heavy metals down, to treating Lyme…on and on….patients were finally able to wean off, and be successful in their continued treatment with desiccated thyroid and/or T3! That success continues today!
But ignorance abounds in the medical profession
Yet in spite of clear success in the treatment of low cortisol with supplemental cortisol in the correct amount for each individual (which can range from 15 to 40 mg generally–men often need the higher end), as well as excellent books on the subject by Wilson, Peatfield, Jeffries and the STTM book, patients like RD below still encounter doctors who fill their minds with all sorts of fear and warnings:
I bought your book and later on I discovered your website which are both great. They are a superb source of information and support for thyroid and adrenal fatigue sufferers. Thank you so much!
Personally I got adrenal fatigue by a sustained lack of sleep for several years (crying babies). I found a doctor who prescribed Hydrocortisone (17.5 mg/day, 5-5-5-2.5), Fludrocortisone, DHEA and Testosterone. Symptoms disappeared in about 2 weeks.
A first attempt to wean off after 6 months made some serious symptoms reappear very quickly, so I returned to the original dose.
It is very stressful that many established doctors (our family doctor, and my wife’s thyroid-endocrinologist) are scaring me like hell that I am taking HC. They are saying I am destroying my body and I will never succeed in weaning off HC.
My wife is a T4-only thyroid-patient with low-cortisol symptoms. She also has been scared about dessicated thyroid and HC. Reading your book I was however convinced she could benefit a lot from a better treatment…
Keep up the good work, as patients we are really left alone in the dark by our doctors…
And unfortunately, it’s true. Thyroid and adrenal patients are left in the dark by many doctors about either the adrenals issue so many of us face, or how to correctly treat it.
What you can do
Here’s where you can read more, and in turn, take this important information into your doctors offices:
- All about the problem of adrenal fatigue
- Wisdom we’ve gained about it all
- Symptoms of having an adrenal problem
- The revised STTM book and chapters 5 and 6
- The last chapter of the STTM II book–the best explanation anywhere of why we get low cortisol
- Talk to other patients, including a group targeted for adrenal issues
Click on the graphic above to order an excellent saliva cortisol test.
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If you missed the excellent Part 2 with researcher Dr. John C. Lowe last Thursday evenings, you can listen to the recording, here.
Okay well here’s the thing. I completed the DUTCH adrenal urine test and my results came back showing below range in all times of the day except night. Even my free cortisol was low. My doctor refused to prescribe hydrocortisone and referred me to an endocrinologist in my town where there is only two and they both have awful online reviews. He also told me it would take a long time to get in to see one. Well I’m in a desperate situation. I’m a single mother of three and can hardly look after my kids and my house. My little one is 18 months old. I cant work because my fatigue is so debilitating. I had researched online some people actually eating hydrocortisone cream for adrenal fatigue and it seems to work for them. I’ll probably get poo pooed on for admitting this but I tried it once. 10mg one morning and nothing . I’m so discouraged. How can I have such low levels and have no results from this. My understanding is that it is suppose to work very fast. I’m holding out to see the endocrinologist. I will not be eating anymore cream and I know that the hydrocortisone tablets works fast for a lot but do some of you NOT experience relief from the first hit. For some can it take a few dosages or days. Please let me know. I feel so discouraged and hopeless.
Hi Dianna. Not sure where you live, but you need a MUCH better doctor, not the Endo. Get the revised STTM book–the one with all the people on the front, and read Chapters 5 and 6, and highlight all the info. Then see if you can find a doctor to guide. http://laughinggrapepublishing.com And yes, some people have reported feeling forced to use the cream until they can get on HC. But READ those chapters, and especially chapter 6. It’s important to be informed.
Okay. Thank you Janie. I will do that. I live in Canada and I really do appreciate your advice 🙂
If any one knows of a endocrinologist in the Toronto area that is not afraid of steroids and has some understanding of AF please let me know. Thanks
Find others to talk to here: https://stopthethyroidmadness.com/talk-to-others
Does HC if cortisol levels are indeed low work right after the first dose or do some need to take it for a few days or a week before they notice symptoms improving?
HC works pretty quickly if enough is started on…but then patients tweak it with Daily Average Temps to find their optimal physiologic amount. Chapter 6 in the revised STTM book has all the info and should be studied. http://laughinggrapepublishing.com
My doctor has started me on 10 mg HC daily, but it’s not enough. The intense nausea has abated and I almost sleep now, but it isn’t enough. How do I get my doc to understand that more is ok, and could actually be beneficial? I have been so ill, and he keeps trying the “natural route.” I have become sicker and crash after each new thing we try. The ONLY thing that has made me feel better is the HC. I haven’t seen my children in three months. I don’t care if more shuts my adrenals down. If I have to be on it for life, so what. At least I will have a life.
(from Janie: Show him Chapter 6 in the STTM book. Learn it and teach him. And even since the STTM book was written, we have learned to “start” on 20 mg, not build up to it!! That’s on the how-to-treat page from here: http://www.stopthethyroidmadness.com/adrenal-info It does NOT shut the adrenals down for life. )
I have been on 2 x 4mg of cortisone for coming up to a year and dessicated thyroid. Back then my TSH was normal and the doctors just sent me on my way but I was wandering around in a brain fog and my memory was going going gone until I had a nocturnal seizure over a year and a half ago. I researched on the internet here (THANKS!) and elsewhere to try to find some help.
Now however, my cortisol continues to be low and after so long, my current doctor NOW wants me to increase the cortisone another tablet and I can see why. However, I have read up on the side effects of cortisone and I wonder if they will worsen if I take more. Although these can also be mixed up with my perimenopause and adrenal problems cortisone can also cause side effects such as: missed periods, a showing of male facial hair and lately dry, flaking skin and the latest and worst of all my mucous membranes seem to be shutting down. The inside of my nose is now constantly dry and crusty, it is AWFUL! I have been taking a bunch of vitamins as well E, C, Bs, Iron (helps the falling out hair), Zinc (for the dry skin), Fish oil, using sea salt and now Licorice Root in an additional attempt try to help the adrenals.
Has anyone had these symptoms on cortisone? Do you think I should still try increasing the dose? Will these symptoms get worse? I am still run down and still have some ongoing stress problems in my life.
Anyone else?
Janette
(From Janie: the side effects you are scaring yourself about will occur with overly high doses–those higher than your needs as one with adrenal fatigue. Most patients with adrenal fatigue report finding themselves needing 20-30 mg and sometimes higher. And those who dose according to their particular need, as measured by daily averaged temps, have no serious issues other than feeling much, much better and finally being able to get thyroid hormones to the cells, which stops dry nostrils and flaking skin and more. http://www.stopthethyroidmadness.com/adrenal-info and more detail in Chapters 5 and 6 in the STTM book. Share this information with your doc.)
Does anyone know of a doctor they recommend in the Austin, TX area?
My doctor AND even my mother told me I shouldn’t get on HC because it will destroy my bones and I will gain weight.. I’m on Isocort for 3 months now. It seems to be working but I am weaning myself off to do another saliva test to see where I’m at.
I was diagnosed with adrenal fatigue (via very low saliva tests) and hypothyroidism a few summers ago. I started first on HC and then added in (old) Armour. My Dr. did try to give me an adrenal supplement (Adren-all) while waiting for my saliva test results. I was nursing at the time and discovered that some of those herbs are not the best for babies, or we just don’t yet know if they’re safe. HC on the other hand, does not appear to cross into breastmilk. My many symptoms gradually disappeared over the next five or six months. I was on HC (20 mg) for about 8 mos. before easily weaning off. I tracked my daily temperatures in order to determine when to wean. My adrenals then tested fine. No regrets here!
Thanks Janie for educating me! You have been so helpful.
I started on old Armour last June and bought some Isocort after reading Stop the Thyroid Madness. I haven’t had a saliva test, but I did the pupil test and boy, did mine flutter like crazy! When I started taking 6 Isocort per day, I slept better immediately and haven’t had any acne breakouts. My doctor wasn’t familiar with adrenal fatigue and told me to take just a couple of Isocort pellets but I had instantaneous bad sleep and breakouts so I went right back to 6.
The doctor would only increase my thyroid from 60 to 70 mg (compounded) at my last appointment in October. I see him again Thursday and have sent him Janie’s Mistakes Patients and Their Doctors Make. If he won’t increase it, I’ll be in the market for a new physician.
I know I should get a saliva test, but I sure don’t want to do without the medication for two weeks.
I went the direction of natural supplements for treating my adrenals for about a year. I tried a variety of natural supplements, herbal remedies, etc., both from the healthfood store and from a naturopathic doctor. It was not cost effective and it was not working. Most made me very sick, to a point that I was unable to function if I kept taking them. I’d end up having to stop after a couple of weeks.
After a few tries her recommended herbals and supplements, my ND finally prescribed HC and I woke up! What a waste of time and money, when this low dose steroid made me feel so much better, immediatly, and at a fraction of the cost of all those supplements! I felt fantastic, the best I had felt in years, and had numerous other positive “side effects” that I didn’t even expect. I would rather not have to take this stuff, but for now, it’s giving me my life back. I wish doctors would open their eyes and recognise that there are benefits.
Renee, you are extremely lucky! I, too, tried the “natural” route for 7 long years, and saw my adrenals become worse and worse by the year. I did the herbals, the Adrenal Cortex Extract that was touted to be so natural and wonderful, as well as acupuncture, chiropractic treatments, etc. And every year, my symptoms got worse and worse… it got to the point where I could never get out of Stage 7 adrenal fatigue. Yeah, I did all the things I was supposed to do to reduce my stress: divorced an alcoholic, emotionally abusive husband, moved back to my hometown to be around family, got into good therapy… and the therapy made things WORSE– because I was so cortisol deficient that my body couldn’t handle the stress of therapy twice a week. I was physically a wreck, and had to have my mother care for my young son for several weeks. At one point, I was going to check myself into a “chronic fatigue sanctuary” in Pennsylvania, hundreds of miles from my home, which cost thousands of dollars, and who knew how much it would improve my health? I finally came to the realization that the “natural” route was doing zilch for me. I found an excellent adrenal support group, and began HC therapy. A few months of testing the waters with a low dose of HC led me to believe that I needed a full dose of upwards of 20 mgs per day. Once I was on an adequate dose fo 20 mgs a day, my thyroid labs finally showed the hypothyroidism that I’d suffered with for almost 10 years. In less than 2 years, I’ve gone from being bedridden to opening up my own genealogy research company. Yes, I still need a chiro adjustment every month, and NOW therapy WORKS, because my body is no longer in a fight-or-flight state. I can RELAX. I celebrate the day I found HC, and with that, the resurrection of my life.
I think when your deficient in cortisol and or have something life threatening than HC is merited.
for the record I had 8 years of cortisone shots and creams for allergies as a kid. I have autoimmune diseases and numerous allergies. They don’t run in the family. Link?Not sure I am a documented case of an allergic reaction to Prednisone. yes there are documented cases to such per about 10 doctors who worked on my case and the latest autoimmune dermatologist ( really he has both degrees ) who said that the allergies are usually to that ” family” of steroid. I imagine its due to the carriers. I almost died after being on low dose prednisone due to my allergic reaction. The only real reaction I got to hydrocortisone after 4 years was my skin turned purplish and my throat would kinda close up for about a week after the injection.
I’ m not being negative on steroids for everyone, just for me. I have nothing but total respect for docs who are cautious with steroids.
Renee, consider yourself lucky! I am so glad it worked for you!
The way I see it, use of HC to replace cortisol is just like replacing any other hormone that you might need. If you are lacking, it needs to be replaced if you want to feel better.
Armed with the information that I had after reading Janie’s book “Stop the Thyroid Madness”, and Mary’s “Living Well With Hypothyroidism”, and several others suggested by Janie (and several nights of no sleep) I confronted my Doctor. He finally sent me to a endocrinologist. Today I went for many blood test. He said my insurance will not pay for Natural Thyroid. But he’s willing to prescribe it.
I have been on levothroid for many years. Have continued with hypo symptoms. Thanks Janie and all the others that have given me the courage to say to my Doctor, YOU ARE WRONG, it is NOT in my head.
Lets keep the pressure on them to listen to us and to our symptoms, not just Lab #’s
After battling adrenal fatigue since probably my early 20’s I have found that doctors tend to base their “scare tactics” on the early days of using HC when it was given out for everything in very high doses and touted as a miracle. Mind you this was long before I was born. Today, it seems the drugs of choice for adrenal fatigue are antidepressants and anti-anxiety drugs. Profitable and they don’t lead to a cure. They keep you coming back for follow up prescriptions and liver blood work and if you try to get off them….the anxiety comes back triple-fold. Those drugs come with their own list of scary risks and side effects, like permanent liver damage..no worse than HC in my opinion…probably far worse. It’s simply misinformation!
All the docs I’ve been to continue to deny the existence of Adrenal Fatigue. And most of them don’t even know anything about Hashimoto’s. I went to one quack that told me Hashimoto’s is nothing more than inflammation and I should take NSAIDS for it! None of these doc’s know anything.
My current doc has me on Levothyroxine because I had terrible problems with the new Armour formulation. The Lev got my level down, but I can’t lose weight on it and in general don’t feel well on it. And still get the cold hands and feet and all that. I’m never well, and I think it’s because I’m being undertreated.
I found a doctor I love. A doctor willing to prescribe desiccated thyroid, HC, and other things most doctors won’t. It still amazes me when I go to other doctors (gyno, etc,) and they ask what prescriptions you take and they freak. All my other doctors keep telling me that HC, DHEA and natural desiccated are not the best options and that they don’t understand why I would be taking them at all. The endo I went to before I found my doc told me that natural desiccated would give me a heart attack. Hello! Half the stuff my doc has me on is ALSO used to help patients with heart problems. I don’t understand why there is such controversy over prescriptions that most patients say have been amazing for them.
HC as well as Naturethroid have saved my life, career and possibly my marrage. I know I didn’t want to live with myself, why would anyone else?
Without HC the Naturethroid couldn’t work. The Synthroid certainly never worked. My adrenal function was low all day long.
Once had a doc tell me that I would have to be close to death in the hospital before he would rx HC to me. Why in the world would I want to wait that long? Do something to prevent it NOW!!
So I have hypo for about 5 yrs now and suffered from adrenal fatigue as well. I was told the same negatives about taking cortisone, and quite frankly I side with the drs. I took other adaptogens and certain herbal supplements in a product line by NeuroScience-which are prescribed in tandem based on saliva test panels every 4 months. My cortisol levels when I started the therapy 2 yrs ago, were around 2 in AM, and 0 at bedtime-4 tests thru out the day-should have been around 10-11 in AM and 0-1 by bedtime. Right now my last panel after having taken the supplemental therapy for 1 yr and then a yr off, now my body has started to remake cortisol on its own and now my AM levels are around 7 and 1 at bedtime. So I am getting there. Rhodiola rosea is one of the active ingredients in the adrenal formula, and I think 5-HTP?-its called “Adrecor”.
But anyways by balancing other neurotransmitters, vitamins, and hormones affect your adrenals as well, it is a very complicated dance of chemicals that I still dont understand, but I know it took ALOT of patience and napping and reading online to even understand and feel when my body feels good. I also have Meyer’s Cocktail IV supplement once a month, and that helped repair them as well. I had an MRI to rule out cysts or tumors which all people should have done with this condition, it showed nothing.
My drs concern about HC was that by supplementing with hydrocortisone straight out of the gate then you are in essence conditioning your adrenals to not bother to produce any on their own, and over time you render them useless. And that adrenals should not be considered like hypothyroid issues they dont function the same way where you will always need to be on it. They can repair.
My personal take is that I found when I got rid of stress-afterall they were cooked from yrs of stress and reduction of nutrients in body used up to recover from yrs of stress-well once you fix those imbalances which I did I feel I am repairing my body and feel about 70% better then when I started 2 yrs ago. I am still married to a special variety of ***hole so that takes its toll, but even that is becoming a dealbreaker for my health so when that decision is made I know I will be 95% better, right now I feel about 70% better since when I started 2 yrs ago.
I’m not saying I wouldn’t have taken hydrocortisone, or he wouldn’t have prescribed it AT ALL, but we tried the natural way first-that was our plan, and it slowly but surely is working. I think its unwise in any area of healthcare to just throw drugs at something when the body is capable of healing itself with the right modifications.
I am more concerned though about people who dont have access to the same healthcare I do & who dont even have a dr who believes adrenal fatigue is a real condition, or who even do saliva testing. If I did not have decent care to do the natural route and the time to wait to heal on a natural program then I’d probably push for the Rx.
Thats just my opinion I could be wrong.
Well I can’t live without taking an antihistamine every few days and some people will drink coffee or take caffeine stimulants for the rest of their lives everyday ! That is a ridiculous argument.
If your adrenals aren’t working properly and never have done, and some hydrocortisone every day for the rest of your life brings you out of the HELL of adrenal burnout and back to life, you bet your ass I will take it every single day of my entire LIFE !
We all have to eat don’t we ? …food is just another burden as is medications.
I don’t yet have ‘studies’ on my personal use of long-term HC.
What I do know is that living a life on tanked out adrenals is not a life worth living, for me.
For me, life on HC, no matter what kind of ‘scary’ things can happen because of it (and I want some evidence that I’m ‘ruining’ my body), is still preferable to living the life I lived prior to HC.
What kind of life is it when I’m too exhausted to work, so much anxiety that I need to be on psychiatric drugs that come with their own set of side effects and further deplete adrenal function (and what about the proven side effect of the darned drugs: suicidality, isn’t HC preferable to THAT?, and the myriad symptoms related to depleted adrenals.
Now, on HC, no need for psych drugs, energy to do the things I need to do, and if in the long run HC will have shortened my life (which someone has yet to prove to me) at least I will have lived these years qualitatively.