Cortef/Hydrocotisone

Luckily my LLMD checked my adrenals...I had been sick 2 years and seen all kinds of doctors but he was the only one that did the saliva test...

I am going to check with my endo about having the blood cortisol done multiple times in a day just to see how much they flucuate.

I also had rib pain when I had Lyme...

Hi +Lyme,
Glad my description of the adrenal symptoms was helpful for you.

I don't really understand the connection between emotions and adrenals but it is profound. I remember being in horrible pain, completely weak, feeling awful & suicidal once, I was very ill at that point and admittedly depressed but no where near suicidal, so I stopped and thought for a moment and ask myself "why am I SUDDENLY hopeless"...realized all my addison symptoms were horrible and decided to take some extra hydrocortisone to see if it helped. Amazingly in about 45 minutes the crying, suicidal & hopeless thoughts were gone and my physical symptoms were greatly improved! The symptoms are a nightmare but most Drs. don't get how painful and awful it feels.

Adrenal Insufficiency (AI) is very serious. I've heard that bovine adrenals help some people, but it depends on how bad the AI is and what is causing it. If the adrenal failure is caused by auto immune or Lyme it will likely continue to get worse until you need to replace the cortisol with hydrocortisone.

If you ever feel awful and it doesn't get better, it could be an adrenal crisis and you should go to hospital and tell them you have adrenal insufficiency...they should treat you with IV fluids and hydrocortisone. Adrenal insufficiency can be fatal if you get too dehydrated from a stomach bug, are too stressed or get too sick (even a lyme herx can sometimes cause a adrenal crisis).

Hope your drs. take good care of you and treat the adrenal problems the best for you!

Blessings,
Paulette

Reading these posts brings to mind, once again, how different we all are. Before I knew I had LD, and was suffering with chronic low blood pressure and fatigue, I was tested via insulin tolerance test for adrenal function, and was found to be borderline Addison's. I was given coftef, 10 mg a.m. and p.m. It was as if I'd discovered the fountain of youth! Suddenly I understood how other people must feel. Instead of being lethargic, I had energy to do things. It was wonderful. I think I took it for about 8 months, in preparation for major surgery. During that time my cortisol levels improved. After surgery I cut back to one pill a day and my endocronologist said, if I wanted, we could see how I'd do without it. I was weaned off of it slowly, and have not needed it since. That was in 2007. Now if my bp gets low, I eat something salty. And I make sure I get plenty of liquids every day. Still, if I have even a slight procedure, I need a stress dose cortesone shot to help me through it. I tried going through oral surgery without it last summer and was fighting to maintain consciousness the whole time. The silver lining, though, is that for me it worked to support my system for awhile with cortef, because now my adrenal function is improved to the point that I really don't need cortef any more. I know it is difficult to figure out what to do, and just wanted to share my experience in case it could help.

Rose

Hi!  Jumping in in the middle.  I too, struggle with low adrenal fxning and was recently put back on low dose cortef.  I carry solu-cortef and have a medical bracelet.  Even though I only take 2.5 mg pm and 2.5 am, I have had adrenal crises in the past.  I have to say though, that whether on dexamethasone or cortef, I don't feel any different.  I just haven't had the crises when on the meds.  Side effect is some weight gain.  When I stopped cold turkey in the past (even from .5mg dex), when I got sick, I crashed... needed the ER.  I have also been on more natural replacement, didn'[t work as well.

I was under the impression that whether on dex or cortef, you needed to be off of them for a while in order to have an adequate reading on an ACTH stim test.  Of course dex stays in the system longer.... actually so I think folks might have it reversed (re: weaning to dex in order to test). 

I was first (mis?) diagnosed with CAH (3 beta form), as was a friend of mine.  Turned out the both of us had lyme, and docs have taken back the 3bHSD diagnosis.

I agree with you all, these posts remind me of how different we all are.  

Also, the specialist/generalist topic.  Specifically with Dr. H (as mentioned above), one should be going to an endo if s/he has these problems. That is where I ran into problems. Difficulty is, a LL endo is almost impossible to find!  I am with a doc whom is more individualized now, and also did find a LL doc who specializes in endocrinology.  What a process! 

I hope that folks on low dose steroid are feeling better after reading this thread, we are not alone!  So many lyme patients with endo issues, those are my primary issues..

I've been reading the posts and can relate to the depression. I thought at first it was just from the fatigue but the thoughts of not having a reason to live scares me. I always loved life and was always active.
Feeling like I could care less about going on is not a good state to be in. When it has hit hard I remember the only thought that
kept me going was the thought that one day I'd be dead and wouldnt have to deal with all this anymore. Once I came out of it I didnt feel that way anymore.
It comes with the flare ups. So I understand totally. Its the Lymes talking.

As for Adrenal fatigue, I was not tested but I believe I am dealing with that just from symptoms of feeling someone pulled the cork and
my life force spilled out. I could not get up to get food or anything. I'm being treated holistically and gradually over 2 weeks I can walk around and even did my
Tai Chi out on the deck before. My legs were shakey after, but I did it. I am feeling more solid. I'm taking herbs and supplements and homeopathy to support the
adrenals. This type treatment takes time but its working and no wacky side effects. I am so afraid of drugs, that would have to be a last resort for me. I've always been this way.
I even hate taking aspirin. I'm weird like that.

great expectations said...
Hi All,

I have LD and Addison's disease.

10mg of hydrocortisone (HC) is a small dose.  It is usually better to split the dose 2 or 3 times a day.  For example: First dose would be first thing in morning, 2nd dose at noon, and 3rd dose 3pm.  The usually dose of HC to replace what the adrenals make is 25-30mg HC.  If your saliva test shows that your adrenals are not making enough cortisol then there is no danger of suppressing your adrenals, because the steroids you are taking are simply replacing the cortisol that your body is not able to produce.  

Steroids are only bad for lyme treatment when they are either not needed or given in high doses (40mgHC or more).

If you do not support your adrenals now, you may end up with addison's disease.

___________________________________________________________

Great Post.....so I have flat lined adrenals, not addisons but no adrenal function to speak of - my LMD wants me on 20-25mg Hydrocortisone so i assume this is a safe dosage to replace whant my adrenal glands are not making.  Lets hope if I replace now and treat that they may recover.

So to confirm in a situation where you are in severe adrenal fatigue 25mg cortef is safe with Lyme?

ktp812 - what is an adrenal stim test?

I agree with what you said about taking cortef for a short period of time. I think I was on it for only about 6-8 months. When I eased off of it I had no problem at all and discovered that my adrenal function was much improved, though I still need a stress dose for physical procedures, etc.

Rose

well I was only on 7.5mg but now my Lyme has become very bad again my adrenals have crashed, they alway recover when I have treated

I do believe what this lady said earlier in the post is true: I Quotw: If you have any level of adrenal insufficiency and you taper completely off of the steroids it can be very dangerous. And IF your adrenals are "healthy" you should be able to taper off of 20mg of cortef without much problem...people successfully taper off of 100s of mgs of steroids after arthritis or auto-immune treatment, so 20mg is not big, unless your body is not producing enough cortisol and you Need the steroids to support life function.

So if you cant back down without crashing then IMO your body still needs the cortef as I personally know that when my nfections are under control I have no problem backing off but like now they have flatlined again due to infections flaring again and you CAN NOT treat Lyme/Co-Infections if the adrenals are not supported if need be as you will never heal.

Hello - this message is for Ktp812; I wanted to message you privately but I'm new to this site and there doesn't seem to be a way to do that. Anyway, it would mean the world to me if you could share more about your experiences with tapering off Cortef. I'm in a similar situation - very similar actually. I've been on Cortef for 2 years and due to side effects I really need to come off of it now. Its giving me a lot of tendon issues. Anyway, I was just diagnosed with Late Stage Lyme Disease, after 8 years of being incredibly ill. I'm currently very debilitated by all of these health issues (to top it off I have other hormone deficiencies too) and I could use any hope I can get right now. I'm terrified that I won't be able to wean off completely, and I regret ever having gone on HC. I would love to hear how you're doing and any tips you might be able to give me? I've tried weaning in the past and I agree with you... it is far from easy. Thank you so much!! Hope you're doing well.

I am grateful for tjis older disvussion. I had a spit test a d it showed vlatlined cortisol except the midnight sample it was too high. A prior test showed same flatline. Had an acth stim test a yeR ago and endo said my adrenals were fine. So im just as afraid of steroids (had mu, tiple cortizone shots for an elbow in pain, I now wonder if those shots were the ladt straw as I continyed to de line).

I am feeling very uncomfortable about taking the cortef, I picked it up but reluctant to try. Llmd also suggested cortisol manager at night. Im more inclined to trh that. Im already taking armour thyroid and we are still trying to getthag at righf levels. Im not diagnosed with Addisons so scared to take vortef. I want to trust my llmd but over the years drs have not done right by me.

Yes I started having thyroid issues last fall.

Fhx vor the link

Weird—the link works if I go straight to the site. Here is the post that I liked:

"I have treated many patients with Cortef or another product Hydrocortisol (compounded as an instant release (IR) or sustained release (SR) version) for years. I have two warnings.

1. Cortisol deficiency is more often than not a sign of an underlying problem and not the primary problem. The primary problem is your body's natural response to stress. I know your doc told you the same thing but it is worth repeating. The goal is to get off the cortisol and to use the cortef and the energy it provides to fix the original problem. To me it is like taking a diet pill to lose weight. Sure, it makes you lose weight, but ask anyone who knows about metabolism and they will all tell you it is not a good idea to rely on diet pills to lose weight permanently because of the negative effects of starving the body and the subsequent negative effects on the muscle mass.

Anyway, in my experience it is almost impossible to find the mental clarity and physicial strength to fix the stressors in one's life without the cortisol replacement in some cases, but it is important to see cortisol deficiency as a sign of an underlying problem, to fix the underlying problem, and then come off the cortisol.

2. I have many patients who love how they feel on cortisol. For the first time in a while they have energy, stamina, clarity. If they miss a pill or forget it they feel horrible almost immediately. A dependence on "the pill" to feel good develops in that environment very quickly. I assume you have read Dr. Wilson's book on Adrenal Fatigue and see that he only briefly mentions cortisol as a stepping stone to get through the process of healing your adrenal fatigue. Don't allow yourself to rely on the cortef for long-term treatment as it can and does cause problems long-term.

The potency as a steroid of cortef is low enough to be safely used at the dose you listed or below (for example prednisone, another cortisone is very much more potent and not generally safe for long-term use). They are not the same thing because of their relative potency differences, so you could use cortef safely for much longer, but again, obese people shouldn't rely on diet pills to make long-term weight loss possible, smokers shouldn't wear a patch for ever to keep off nicotine, alcoholics shouldn't take antabuse to keep from drinking forever and Adrenal Fatigue patients shouldn't take cortef (cortisol) long-term. Your adrenals can heal, but it will require a lifestyle change to make it happen. You can fix the problem that lead to your disease.

Read the adrenal fatigue book until the spine is worn out, memorize the book. Here is the best way I have found to explain adrenal fatigue to my patients (I am a FP doc who recognizes that 90 percent of disease is nutrition or stress induced). Our bodies are complex machines, designed or evolved to function in a different environment than we are asking them to function.

If you are in the designed camp you know the design was for a time when the expectation of life was to wander through a pleasurable existence with all our needs met and very little if any stress (no bills, no illness, no mcdonalds) and from the evoltionary camp (yea, us) we were evolved to be part of the natural cycles and part of the food chain. Our existence was uniquely tied to the fluxes of our food sources and our stress levels were generally low. Again, there were no bills, no expectations of health . . . about 10,000 years ago or so we figured out how to grow more food than we had people and we quickly procreated to meet the food supply and then we grew more food and quicly procreated to that new food availabiliy. (I loved this analogy from Daniel Quinn's book, Ishmael) The point is our stress systems - particularly the cortisol production and adrenalin production from the adrenals in reponse to a threat (i.e., fight or flight reponse) was supposed to be used so infrequently that we hardly ever used it - maybe if we stepped in the path of a beast higher on the food chain in the pre-NationalRifleAssociation era (The NRA might have upset the food chain balance making us higher ;)) our adrenals would sap our progesterone to make cortisol for a brief moment and then we would run away, find a nice safe place and sleep it off for a day or so.

Now adays, we have reversed this process - we spend almost every minute of every day in a cortisol driven state with high adrenalin levels and high cortisol levels, and low progesterone levels . . . cortisol is made from cholesterol (chol to pregnenolone to progesterone to cortisol - please forgive the skipped steps) - anyway, we have feedback loops in our body to produce more cholesterol to then make more cortisol . . . (at least it is hypothesized if not perfectly proven yet - I know I see lower cholesterol once I normalize the hormones). There are many other contributers to high cholesterol, but this is one.

OK, the body only knows whether it is about to die or not about to die. There really isn't a middle ground. So in essence, anything but living in the garden of eden for example is considerrred life threatening to your body. Life threatening equals adrenal demand, adrenal demand equals hormonal drain, horomonal drain eventuals depletes hormones (primarily progesterone), which leads to adrenal exhaustion which leads to full blown adrenal fatigue.

So the cure isn't to replace the cortisol that your body has been overproducing in response to "stress", it is to de-stress your existence. The problem is we are convinced that we can't destress because it is impossible to quit your job, leave your spouse, abandon your kids, forget your bills . . . those excuses will kill you.

You need to take the cortef if your doctor rx's it, but read the adrenal fatigue book, work the plan in there, take the supplements to help your adrenal and reclaim your stress. Another book I find particularly helpful is called "Healthy Selfishness" I can't remember the authors, but the point is that you can't be healthy if you spend all your time holding everyone else up at your own expense. You have to get over the guilt of being a little selfish to promote your own healing and health.

OK, I'll stop rambling, but as an MD, I know if I can get my patients to realize exactly how stress is affecting their molecular pathways it is often easier to get real lifestyle changes in the areas of nutrition, medicince compliance, exercise, relaxation, depression, anxiety . . . . etc. I read somewhere and I believe it that 90% of all disease is nutrionally based and I would augment that by saying that 99% of disease is caused by ignoring the amount and level of stress (anything not resembling the garden of eden analogy) and the level of nutritional awareness a person chooses to have and not a deficiency of prescription medication.

I hope this helps, but please get the book and read it. It can be very helpful in guiding you to curing your adrenal fatigue. If your doc uses cortef he or she must be aware of everything I mentioned and you are lucky to have gotten to a place where someone cares enough to step outside of what we were taught in medical school. I practice 90% tradtitional allopathic medicine and 10% in the world of adrenal fatigue and BHRT, but I use the adrenal fatigue knowledge on 100% of my patients.

Have a great day, adddoc"

-p