Adrenal support is maintaining remission, Cortef

[bobh]

Hey folks, as you may recall I was having the flair from hell that nothing would stop - then killed it by resorting to drugs (Prednisone --> Entocort).

I was symptom free since September 5th, the day after first dose of Prednisone (a big dose). http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4794

I have been very focused on fixing my adrenals and thyroid, after Marsha posted some stuff about her Hashimoto's thyroid, and Beth posted something about her adrenal testing, and the more I researched the more I saw my "other" symptoms (as my "D" has been OK for 6 months).

So I did some labs, and found my adrenals were toast http://www.chronicfatigue.org/ASI%206.html

Then I did a lot of research on what to do about it, because in years past I had "natural" doctors sell me bags full of supplements that never helped with anything, and some of that was for the suspicious adrenals for someone with chronic fatigue (but hadn't done proper 24 hour adrenal test before).

To cut to the chase, I started a very gradual protocol of taking Cortef to build up the Cortisol that my adrenals aren't making. And they aren't likely to ever make it - as I have the classic "chronic fatigue after drop-dead flu" that shuts down the hypothalamus and pituitary signals to the adrenals (per "safe uses of Cortisol" by Dr. William Jefferey's). So I needed to step in there with this Cortisol, you die if you don't have it, and aside from normal BM, I still felt terrible otherwise.

So here I am, taking 3 Entocort a day, and building up the Cortisol per the protocol of Dr. Peatfield where you start really slow, low doses like 2.5 mg for the first 3 days http://featherstone.bravehost.com/thyro ... renal.html

I work up to the level you are supposed to, about 20 mg a day spread out in 3 to 4 doses. Still taking the Entocort, still enjoying a remission that wasn't happening before meds no matter what. And then I realized I probably shouldn't be stacking these "cortico-steroids" on top of each other.

I cut out the Entocort 2 weeks ago, and haven't noticed any increase in symptoms. I have had normal BM. Of course that is a bit early to tell, and I have heard of people going for a while before they crash and burn.

But the point I am trying to make, is that I was severely adrenal deficient. That may only apply to Beth, and a few others. One of the things Cortisol does is to control inflammation. Cortisol is made by the adrenal cortex (sits above the part that makes adrenaline). Lots of people don't consider Cortef a "drug" as it is extremely close to the naturally occurring hormone.

Of course, you are playing with dynamite if you take it, then suddenly stop. So if you are truly deficient, you need to take it, and wear a bracelet that says "adrenal insufficiency". But that's a better price to pay than to walk around fatigued. Plus if you don't have enough Cortisol, your T3 has a hard time entering the cells, so all of your metabolism functions get slowed down.

I am not trying to promote drugs or prescriptions to anyone who is winning with diet. I remain gluten free and make all my food. But if anybody out there knows or suspects weak adrenals, it is like the opposite of relief from taking something like Entocort, and in my opinion the Pred and Entocort worked so well for me because I really needed it just to have "normal" cortico steroid presence for control of inflammation.

Plus, as if this post wasn't long enough, I know my troubles started in 1986 after a severe viral illness (EBV). Looking back, I know my adrenals shut down after that (it is common, per Dr. Teitelbaum's book "fatigued to fantastic"). I never had "D" issues till a couple years later, then it was a problem for 15 years. So my theory is that the body's Cortisol levels tanked, lost the anti-inflammatory properties, and also immunity goes downhill.

Remember a post a few months back about "non-symptomatic" people that were found to have MC or CC during colonoscopy? I just couldn't believe it. I was diagnosed with MC, googled it, found description "horrific diarrhea up to 12 or more times a day" and went "bingo". How could somebody have this and not have the sh*ts? I bet those non-symptomatic people had good adrenals.

Beth got hers checked by Diagnostec labs, they were the first to do the adrenal test with saliva (preferred as you check it 4 times through the day to get the pattern, better than a one time blood test). You can order that test, without going through a Dr, and get your thyroid and other interesting things checked for $141 through these people: http://thecanaryclub.org/content/view/196/52/ My test showed adrenals were flatlining. This may not apply to anyone else, but wanted to mention it in case the shoe fits.
======== Update of 2012, May 19 ===========>
Adrenal support alone did not maintain remission. Several months after my 2007 remission I was "as bad as ever" and decided to go back to Entocort (which handled it completely). I have been using Entocort "as needed" for about 5 or 6 years now with no known side effects or problems. I am thankful to have a remedy that works for me.

[Polly]

Bobh,

Thanks for taking the time to post your story. We always learn so much from each other here.

It seems that you have finally got a handle on everything. I am wondering about your doc, who must be quite open-minded and interested in your input. I'll bet it was you who suggested the diagnosis of chronic adrenal insufficiency and found Dr. Peatfield's protocol for treating it. Or maybe I am underestimating your doc! LOL!

EBV (and herpesviruses in general) are among the more wicked bugs on the planet, IMHO. They can create havoc - especially with recurrences and longterm effects. They are still poorly understood, IMHO.

Glad to hear you are not taking 2 different steroids and that the diarrhea remains in control. And that you are fully aware of the need for tapering, should the need arise.

If I am calculating correctly, 20 mg of hydrocortisone (Cortef) is equivalent to about 5 mg of prednisone. And dividing that 5 mg into still smaller doses per day should give you a much more physiologic response (be much more like the way that the body's adrenal puts out glucocorticoid).

I'm sure your doc will monitor you for steroid side effects, like cataracts, oteoporosis, etc. - but again, the fact that you need this drug and the way that you are taking it will hopefully minimize any long term consequences.

Thanks again for taking the time to educate us.

Love,

Polly

[bobh]

I'll bet it was you who suggested the diagnosis of chronic adrenal insufficiency and found Dr. Peatfield's protocol for treating it.

Yep. In my individual case, I believe my "flatlining" adrenals, and Hashimoto thyroid with low T3 was the elephant in the room that no one noticed. I had to ask for the labs for all of that. I wouldn't have known to ask without seeing the posts from Marsha (Art Teacher) on thyroid, and Beth on her adrenals. "Bingo - sounds like my symptoms"... and it was true.

I'm sure your doc will monitor you for steroid side effects, like cataracts, oteoporosis, etc. - but again, the fact that you need this drug and the way that you are taking it will hopefully minimize any long term consequences.

I have zero concern for consequences, because I am 100% certain that the deficiency of adrenal cortisol was causing much, much more trouble. Imparing the ability of T3 to enter the cells is a big one, the whole metabilism picture... I am just putting back what isn't there.

The other part of that, is the previous fatigue is improving, brain fog is improving. I don't see it as an "either - or", but if I was stealing part of my longevity in order to have quality of life now, I would do it.

I could see that arguement with long term Prednisone, but I don't view Cortef the same way. I believe it is the closest thing to the Cortisol that my adrenal cortex is failing to make. I have heard Prednisone is hard on the liver, and is a "bigger stick" in terms of its impact on the body. It sure stopped my "D" in a hurry - but I also felt sort of Manic. Cortef doesn't do that to me at all.

Thanks for your input Polly, your input is a beacon of light!

EBV (and herpesviruses in general) are among the more wicked bugs on the planet, IMHO. They can create havoc - especially with recurrences and longterm effects.

Yep. That's when it went downhill for me, in 1986. In fact, when I look at the following quote, it helps me to understand that my low functioning adrenals are likely what they call "Secondary Adrenal Insufficiency" which means the pituitary is not signaling them to produce enough. That isn't really something you can fix, so I need to step up to the plate and take something (Cortef) or I will just stumble along without enough Cortisol, and all of those symptoms (which I theorize may include colitis as lacking the anti-inflammatory effect of Cortisol - a naturally occuring hormone that is necessary for life).

Here's a quote from Fatigued to Fantastic by Dr Teitelbaum:
pg5 INFECTIONS - THE DROP-DEAD FLU The most notorious pattern seen in severe chronic fatigue states is one in which a person who is feeling fine suddenly comes down with a brutal flu-like illness that never goes away.... These infections can suppress the hypothalamus, located in the brain. Hypothalamic dysfunction is common in chronic fatigue states.

pg6 For most people, the suppression of the hypothalamus ends when the flu is over. Dr. William Jefferies... has theorized that people who remain chronically ill after an infection have long-term, sometimes permanent, hypothalamic suppression. he has found that treating such patients with adrenal hormone (in doses that are normal for the body) can safely bring about marked improvement. My research supports his findings.

pg23 Your body's metabolism is controlled by a series of glands that create messengers called hormones. These hormones are controlled by feedback mechanisms that are constantly interacting with one another in an elaborate dance. This dance is initiated by the hypothalamus, an ancient structure deep inside the brain. The hypothalamus is the body's master gland and acts like the conductor in an orchestra. It sends hormones to its next door neighbor, the pituitary gland, which in turn controls the thyroid gland, the adrenal glands, and the ovaries in females and testicles in males.

(Bob is back) that book is by an MD who has seen 1,000's of chronic fatigue patients, it is his specialty, and he has learned to go straight to Cortef as an adrenal remedy, as opposed to lightweight "over the counter" glandulars, etc. He also writes about Armour's thyroid, which includes the storage form of thyroid (T4) and the active form (T3). I tried his protocol even before finding your site in 2005, but couldn't get the dosing right and had bizare side effects. The following site cleared it up for me, using the same meds, but how to dose it, based on published MD's such as the thyroid pioneed Broda Barnes, and Dr. Peatfield: http://www.stopthethyroidmadness.com/th ... e-learned/

[mle_ii]

What's strange is that I swear I have symptoms of problems with the adrenals, and thyroid. And I swear my thyroid is both hyper and hypo, I seem to have symptoms of both. Ugg!

[mle_ii]

So my question is, what is the cause of the low adrenals in the first place? Or low thyroid output for others?

[tex]

Mike,

There are a lot of possible causes. There's a list of causes on this site, but they didn't even mention a lot of very important causes, such as autoimmune issues, and the chronic use of steroids, etc:

http://www.drlwilson.com/articles/adren ... ciency.htm

Tex

[bobh]

What's strange is that I swear I have symptoms of problems with the adrenals, and thyroid. And I swear my thyroid is both hyper and hypo, I seem to have symptoms of both. Ugg!

WHY IS IT IMPORTANT TO KNOW IF I HAVE HASHI’S?? As the attack increases, you will tend to swing between hypo and hyper, making dosing by labs alone impossible. Your labs will be high one time, and low the next…back and forth. The hyper is caused by the release of thyroid hormones into your blood due to the destruction. The hypo is caused by the lessening function of your thyroid due to the destruction. If you do have Hashi’s, you may have to insist to your lab-obsessed doctor to let you raise by the elimination of symptoms, not labs, due to this reality.
http://www.stopthethyroidmadness.com/hashimotos/

Marsha (Art Teacher) and I both have Hashimoto Thyroid, which is the leading cause of Hypo thyroid. Mine was just recently diagnosed, but I believe I have had the symptoms for years.

One of the things of Hashi, is that you tend to by more low than high (as the antibodies "bind" to the Free T3 and render some of it useless) in addition to the gradual destruction of the thyroid. Here's a published Dr article on that http://www.thyroid-info.com/articles/woliner.htm It's a long boring article, but explains why my blood tests were never low enough to get a prescription, yet no one thought to check for antibodys (Hashimotos).

The $141 test I posted above tests for antibodies, but for that specific test some believe a blood test should also be done, and to check for both of the possible antibodies (anti-TPO and TgAb. YOU NEED BOTH.)

[bobh]

So my question is, what is the cause of the low adrenals in the first place? Or low thyroid output for others?

One of the pioneers in this stuff is Dr Hans Selye, and you can see a chart explaining the adrenal reaction to stress here: http://www.chronicfatigue.org/Selye%20large.html
He lists out a lot of different forms of stress, such as Surgery, Infection, Physical Trauma, Immunological and allergic insults (Bob could add gluten intolerance), Severe exertions, strong emotions, malnutrition, severe exposure to heat, cold, sun.

here's a chart with normal Cortisol reading, this example shows a Diagnostec lab result, this is the company Beth used, and her adrenals were toast, as are mine http://www.chronicfatigue.org/ASI%20Normal.html Click at the bottom of the page to go from normal, to stage one, stage two. Mine are between 6 and 7, they are really bad, and living with that undiagnosed is a bummer. I'll take the meds, thank you.

For me personally, I am convinced that my adrenal fatigue was caused by a severe viral illness (a series of them actually) as mentioned in my post this morning, Dr Teitelbaum has treating over 1,000 fatigue patients, has confirmed the theory stated by this Dr in 1981 http://members.aol.com/jefferiesw/safeu ... ecor1.html

As for Thyroid - if you have either a weak adrenal or weak thyroid, they tend to pull each other down. That is because they are the 2 most important components of maintaining metabolism. If one is slacking off, the other has to work harder to maintain metabolism. So people with under active thyroid tend to have weak adrenals, but not always of course.

The adrenal - thyroid board I am learning from has about 1,500 members with over 10,000 posts, and it is a common issue that most Dr's don't know to check thyroid function when prescribing Thyroid. If you have a weak adrenal, and take thyroid meds, it can push your adrenal into crisis, and at the very least the thyroid meds don't make it into the cells due to lack of Cortisol. (that's what the prescription Cortef will help to replace).

For the ladies, childbirth can often bring this stuff on. When the Chronic Fatigue thing hit the cover of Newsweek in the late 1980's, and there were bestselling books on it, they often sited childbirth or EBV virus as the culprit, but there isn't a hell of a lot you can do for a virus. And the would point to Candida diets, that never fixed me.

I think these things directly affect the thyroid and adrenals. After addressing mine since around Christmas 2006, I rather think that anybody who has fatigue, brain fog, tends to be cold when others aren't, has issues with thyroid and/or adrenals. The following site is a wealth of info, and links to other info. I know the people who run the site, and they are of the highest integrity and very, very well read. http://www.stopthethyroidmadness.com/

[bobh]

OK, if somebody was curious if they had weak adrenals and wanted to check it out today, they could do the things mentioned here http://www.stopthethyroidmadness.com/adrenal-info/ For example if you take the blood pressure laying down for 5 minutes, then take it again when stand up suddenly, the pressure should go up. this is the adrenal function, making sure blood is supplied to the brain. My wife did that and hers went down 30. She also has a lot of other real world symptoms of low adrenals, that just confirmed it. Plus the taking of your temperature per this link http://www.drrind.com/tempgraph.asp

As with so many things, you can list 100 symptoms that mean this or that, and you are always going to have some of them

With that said, this site has a fairly accurate assessment of symptoms http://www.drrind.com/scorecard.asp including this chart that helps you to figure out if the problem is more adrenal, more thyroid, or both http://www.drrind.com/scorecardmatrix.asp

[mle_ii]

I'm fairly certain I have some adrenal issues, pretty much all the tests you've mentioned show it. In fact I'd say on the different levels I'm between a 6 and 7. :(

I really need to see someone about this, but I'm just not sure who. I plan on seeing an endocrinologist that others have highly recommended. He's also in internal medicine (I think that's the term) so he'll most likely take a more wholistic instead of specific look at what might be going on.

Perhaps I can get one of my Drs to prescribe cortif to give it a trial to see if I feel less tired.

Here are the symptoms that seem to fit:
Low energy, fatigue, sleepy during day, cold body temp (mostly around 96 degrees F), poor body temp regulation/wildly fluctuates, low threshold to stress, anxiety, panic attacks, low blood pressure, blood pressue does the wrong thing when standing up, frequent and night time urination, GI issues, immune issues.

I also have been tested for having low cortisol and high DHEA. High daytime melatonin levels.

Thanks for all the info.

Mike

[bobh]

I'm fairly certain I have some adrenal issues, pretty much all the tests you've mentioned show it. In fact I'd say on the different levels I'm between a 6 and 7. :(

Gotcha. it sounds strange, but I was really, really happy to see my "flatlining" adrenal graph. Finally found something that was tangible, to remedy. It just made sense, and I had been doing a lot of research in the couple weeks of watiing for the result.

I really need to see someone about this, but I'm just not sure who. I plan on seeing an endocrinologist that others have highly recommended.

The people on the adrenal-thyroid site I am a member of have a generally low opinion of endrocrinologists, even though they are SUPPOSED to be the most qualified - they tend to be very AMA textbook, only look at the TSH on thyroid, and not symptoms. Our group says to focus on Free T-3 labs (not TSH) and to get it to the upper 1/3 of the normal range, not just to say it is in the bottom part of normal, and ignore the patient who is fatigued, cold, etc with obvious symptoms. I listened to a lecture by the thyroid pioneer dr. Broda Barnes, he says you were more likely to be accurately diagnosed with low thyroid in the 1940's and 50's when the paid attention to symptoms, before being robotic on TSH labs and prescribing synthetic T4 which many people cannot convert to the active form (T3) so it is useless for them. Armours has been around for 100 years, has a spectrum of thyroid hormones closer to what the human body can use, but the "higher end" endocrinologists bash it as "from pigs" etc. I take it and am getting better. Not as cold, metabolism perking up, it is gradual but definite.

A. You could order an adrenal - thyroid - antibodies test for $141 tomorrow, and don't need a Dr to prescribe it. Screw the money, insurance, all of that, just do it. http://thecanaryclub.org/content/view/196/52/

B. A lot of people have been happy with the following Dr, who really knows her stuff, and will do everything over the phone as long as there are solid reputable lab results she can base her decisions on: http://www.stopthethyroidmadness.com/co ... php?t=5636 You don't have to get the labs through her office. More info on labs http://www.stopthethyroidmadness.com/co ... php?t=1156

I also have been tested for having low cortisol and high DHEA.

yeah. Per the pioneer Adrenal Stress researcher Hans Selye, that starts happening around stage 5 adrenal failure

The Cortisol levels continue to drop even though we find that the DHEA levels rise. This seeming paradox occurs because the body is no longer attempting to adapt and so there is little drain on the DHEA and so these levels rise temporarily. These patients are able to do little.

http://www.chronicfatigue.org/ASI%205.html

And then it goes on down to stage 6, We might consider this key phase as the body's last gasp to protect itself before it gives up completely. Notice that the DHEA levels rise above normal and in a last ditch effort the body attempts to raise the Cortisol levels again. In this effort, however, the body is out of control and the stimulation is not controlled by the usual manager of this function ACTH. It is rare that we see individuals in this state. http://www.chronicfatigue.org/ASI%206.html[/quote]

[bobh]

Perhaps I can get one of my Drs to prescribe cortif to give it a trial to see if I feel less tired.

If you do that, be sure to start with very low dose as per Dr. Peatfield (quoted and linked above). Our thyroid - adrenal site has a summary of the dosing here: http://www.stopthethyroidmadness.com/co ... .php?t=994

I had tried Cortef a couple years ago after reading Teitelbaum's book "Fatigued to Fantastic". I started with a full 10mg pill and felt fantastic - till I crashed at the end of that day. so I did it again the next day, got a boost, then felt like crap. So I upped the dose, but wasn't spreading it out in the day. Ended up abandoning the project, and yet it was exactly what my body needed. I wasn't dosing it right, and my MD was following my lead...

When the pituitary senses the help you are giving your body, it "down regulates" the body's production of Cortisol as it senses what you are adding. It does this by lowering the ACTH (similar to thyroid being controlled by pituitary by means of "Thyroid Stimulating Hormone" TSH).

So you get yanked up and down.

The key is to start with only 2.5 mg cortef, which means you have to cut the 10 mg pill into quarters, which you will barely feel, for 3 days.

Then you add a noon dose, of another 2.5 = 5 mg total for the day, you are at just half of the 10mg Cortef pill for these days total.

I assure you this is a softer way to go. If you start out with too much Cortef, the unused Free T3 in your blood gets used up rather fast, and you can feel REALLY drained, as you are more hypo-thyroid than before. These 2 are very closely related, and you essentially build up the adrenals to about 15 mg Cortef which will take 2 weeks, THEN INTRODUCE Armour's thyroid, with a starting dose of only 1/2 a pill (assuming one grain, 60 mg pill) and even that should be cut into half and take part in morning, and part around noon.

When I got past 2 weeks on Cortef, I was good and ready for the Armour's, and it was like putting air in my tires. I could really feel it.

then toward the end of the afternoon, despite spreading out the doses, you start to drag again. This confirms the body just really isn't stepping in and keeping these hormones in proper levels, and it is a bit of a commitment to spread out the doses, and not forget. Personally I embrace it, and am thankfull to be born in a century where I can buy a pill, for what my body is failing to do. I feel better on these meds, and let me tell you that Dr. Broda Barnes doesn't consider these "drugs" although you need a prescription. They are hormones, and very, very close to those the body should be producing.

Here's some info on dosing the Armour's thyroid, and again you would want some labs showing you needed it and weren't already in the upper 1/3 of Free T3. I would do a blood test (cheap) in addition to the $141 adrenal-Thyoid one. http://www.stopthethyroidmadness.com/co ... php?t=3635 and this http://www.stopthethyroidmadness.com/th ... ve-learned

You either don't need it, and shouldn't go anywhere near this topic, or if you do need it, this is your open door.

[Reggie]

I drove my Diagnostechs spit tubes down to Kent yesterday, and I'm going to do the Enterolab thing Monday morning and get it in the mail. You know you belong with Potty People when you start mailing your poop!

Like you, Bob, I will be very happy if they find something that I can address. I'm bookmarking this thread for review then, so thanks for so much detail. Any idea how long Diagnostech takes?

I had the drop dead flu last April, which kicked off the D from LC and intense fatigue and brain fog.

It seems like a vicious paradox to get brainfog with a disease that doctors won't treat, so you have to try and fight your way through all this technical information yourself.

[bobh]

I drove my Diagnostechs spit tubes down to Kent yesterday, and I'm going to do the Enterolab thing Monday

Awesome. I did both those labs, and agree that you are doing the right thing. My Brother did his adrenal test with Diagnostec last month and got results in about 10 days, but I have heard of them taking longer.

You know you belong with Potty People when you start mailing your poop!

Yep. I got fairly used to that, with "spectacular" D for 15 straight years. MD's and naturopaths alike seem to get into the "find a bug- take a drug" approach to "D". They can always find "something" that shouldn't be there on the Ova and Parasite test, so they have you take Flagyl or some other poison, or if it is a holistic Dr they have you take a bunch of more kind but similar ineffective remedy for those with a true inflammatory bowel disease that has not been diagnosed, and for which there is no traditional "cure".

Statistically, Entocort (Budeniside) seems to be the Med of choice for those who "cross over to the dark side" of prescription meds.

Again, discovering my weak adrenals tends to explain why I responded so well to taking "Cortico-steroids" as I had rock-solid labs showing that the naturally occurring corticosteroids were way, way deficient. And one of their jobs is to control inflammation, and that is a medical fact.

I had the drop dead flu last April, which kicked off the D from LC and intense fatigue and brain fog.

I wish you a smoother and faster road to recovery than I had, we all learn from each other!

[artteacher]

Hey Bob,

It's so nice to hear from you. I was hoping you were doing well.
Thank you for outlining what you've learned - this is a valuable service to the group.

How big a role do hormones play in MC, do you think?

Love, Marsha