Missy’s Adrenal Journey
The following blog traces Missy’s Armour and sluggish adrenal story in detail, from August of 2005 when she started on Armour, to the discovery of her adrenal insufficiency, to her cortisol use, to a supposedly successful wean off cortisol in the Fall 2006, and the return of her adrenal sluggishness, and beyond to 2009…
You will see how Missy tried hard not to use HC again, but finally understood it was the correct treatment. In her journey, she also has seen how important it is to discover and treat other underlying issues before a truly successful wean an occur.
I started on Armour in August of 2005. I did not tolerate stress well at all before starting Armour and this got worse once Armour was added. Bright lights would feel like they were blinding me and the sunlight was miserable without sunglasses. When I was under stress, I would shake like a leaf. When my husband would drive, I would startle and panic, thinking he was going to hit something–drove him nuts. I felt like hiding at home all the time because I could not stand any kind of confrontation.
Adding Armour made all of the above worse and I started having bouts of anxiety as well. I felt extremely fragile and unable to cope with daily life. I had always, since I was a kid, gotten very lightheaded when I would stand up from a laying down position and at times, I came close to blacking out completely. At night when I would get up to go to the bathroom, I would have to sit on the side of the bed for a couple of minutes or I would not be able to see: blackness would come over my eyes as I would stand up. Salty foods were something I had always craved. I had terrible bouts of hypoglycemia, to the point where I would get very sweaty and dizzy if I didn’t eat. At the checkout counter at Walmart, I would always start sweating and shaking after unloading my big cart of groceries. Shopping was something I dreaded terribly because of reactions like this. I did a temperature chart and found that my temperatures fluctuated widely during the day, from 96.1-98.2 I had problems with going to sleep very early, getting wired and wide awake at bedtime. I would fall asleep only to awake between 2 and 4 am, staying awake for 1-2 hours.
I kept feeling like something just wasn’t quite right, but I stuck with the Armour until I was at approximately 2 grains. I began to take an adrenal supplement called “Enzymatic Therapies Adrenal Stress-End” in October of 2005. This didn’t do a thing for me, but I took it for 2 or 3 weeks. I switched to “Enzymatic Therapies Adrenal Cortex Complex” and it seemed to help just a little more, but not enough to make much of a difference.
The second week in November 2005, I started taking Isocort, an adrenal glandular that has a more measured amount of cortisol. This began to make a difference for me. I played around with the dose and was afraid to take much of it because of fear of cortisol dependency. I found I felt best if I took at least 7-8 pellets. I developed a rash in either side of my ribcage and this remained the entire 2 months I took Isocort.
In December 2005 I had saliva testing done through the Canary Club and found that I rated in stage 4 adrenal fatigue with my cortisol labs low at every stage except midnight, where it was at the top of the range. So this higher cortisol was what was keeping me awake at night. I began to consider taking hydrocortisone (Cortef) after reading more about this from Dr. Peatfield, Dr. Derry, Dr. Jeffries and from the experience of patients on this forum. I ordered the hydrocortisone (HC) and switched over from Isocort to 15 mg of HC in January 2006.
I noticed a definite improvement on this dose with hypoglycemic symptoms becoming lesser right away. I was taking 5 mg first thing in the morning, 5 mg around noon and 5 mg around 4pm. I found I had to stress dose quite often. There was not enough improvement, so I increased to 20 mg of HC after 2 weeks, adding the extra 5 mg in the morning. I held this dose for nearly 3 months, being afraid to take more, and wanting all the time to wean off the HC out of fear. My temperatures continued to fluctuate widely and I still had to stress dose for many situations. I increased Armour during this time from 3 grains to 4 ¼ grains. But I wasn’t seeing relief of symptoms like I should. I was extremely fatigued in the afternoon and it could come on me around 3 pm so severely that I would leave work to go home and lie down.
Near the end of April 2006, I squelched the fear and increased the HC to 25 mg. In 2 days, I experienced what we call a thyroid dump. I had been way too low on cortisol this whole time, so my Armour was just building up in my blood and not getting into the cells. When the thyroid was suddenly taken up into the cells, it was too much and I experienced sudden hyperthyroid symptoms. My temperature soared from the usual 97.5 to 99.1! I was hot and sweaty, achy, nauseous and could not sleep at all. I had to stop taking Armour for 2 days.
Once the thyroid dump passed, I was suddenly feeling better. My afternoon fatigue left completely. I was no longer having fluctuating temperatures. Stress dosing became almost non existent. I started back on the Armour at 3 ¼ grains (1 grain lower than it was before). I increased my Armour back up by ¼ grain every week until I was back at 4 ¼ grains. This was truly a turning point in my journey.
I continued to take the 25 mg of HC until July of 2006, 3 months total. I was at my optimal dose of Armour and began to forget to take my last dose of HC..with no consequences. Then I dropped another 2.5 mg; I kept on dropping 2.5 mg every week or two. I had to stress dose when we had a lot of company and when my son got married, but slowly but surely, taking 3 months, I weaned off HC completely, noticing no weakness or problems at all. I did pick days that were very low-stress to make my reductions and this worked very well.
Now that I am off the HC, I am feeling really good. I am sleeping well and going off the HC has not caused me to be weaker in any way. I feel much stronger than I was before starting HC. I’m not fragile anymore. Stress is easier to take and I don’t have to carry food with me everywhere I go because of hypoglycemia. That seems to be gone completely. I can take walks without getting overtired or shaky. My adrenals seem to be reset to a normal daily pattern, allowing me to sleep at night. I could not have tolerated the Armour, nor could I have ever found my optimal dose, if I hadn’t taken the hydrocortisone for those 10 months. Life is good today! I don’t regret for a minute taking this journey.
MARCH 25, 2007
Missy’s Adrenal Story, Part II: Bumps in the Road
It has been four months since writing the first part of this story. In that time, I have gone back into severe adrenal fatigue and at the present time, I am beginning to feel better again.
I felt very well for the first two months after weaning completely off hydrocortisone, which I had taken for a total of 9 months in 2006. During that 2 months, I was awake, alert and able to focus on tasks. I was again excited about projects and accomplishments. There was firm hope that I was finally feeling better and that it would continue indefinitely. I am sure that this was obvious in the first part of my story.
During most of that 8 weeks, I had very little stress in my life and things went very well as far as my adrenals. Things became very stressful around Thanksgiving, when I volunteered to cook a huge dinner for the family. I was very exhausted after doing that, and it took several days to recover. I have no idea why I did not stress dose, but I was very determined to stay off HC, so that must be the reason.
December dawned and our business became extremely busy..and stressful. I had a confrontation with an employee that involved heated words over a job she did not think she should have to do. I was left trembling and exhausted. It took me again, several days to recover enough to be able to function. This took place in mid-December and from this event, I could not seem to recover completely.
I then began a downslide into extreme adrenal fatigue that, by January, left me almost unable to function at all. I became extremely achy in my joints, with debilitating stiffness lasting for several hours after waking up in the morning. I could hardly walk and using my hands for almost anything was so painful, that I did very little until close to noon every day. My concentration was badly affected and brain fog ensued. I began to need a nap every afternoon around 4 pm just like I had before when I was so sick.
On January 2, 2007, I took another saliva test and sent it in. I knew that the results would not be good because of the way I was feeling. The testing showed that I had slipped back into severe adrenal fatigue, just as I had suspected. I was at stage five, even lower than I had been before treatment with HC. Not only that, but my thyroid labs showed that I was not getting enough thyroid hormones to my tissues, leaving me hypothyroid again. I knew I could not raise my Armour because the cause of that was my low cortisol.
I decided I needed to wait until I saw the doctor at the end of the month as I was scheduled for my yearly blood work. Those next three weeks were some of the worst of my life. By the time I saw the doctor, I was miserable. I had terrible anxiety and the adrenaline was such a problem that it sent my heart rate soaring and I was terribly nervous about what the blood test would show. My blood cortisol that morning came out a 24, at the top of the range..but I was left drained for the rest of the day, signifying that I has used up all the cortisol my poor adrenals could put out. So of course the doctor did not think I needed to do any further testing. I had hoped for an ACTH stim so I could see what that would show. But even after showing my doctor my saliva test results, he did not think it was necessary to treat my low cortisol.
I knew I could not live like that, so I began to take HC again at the beginning of February 2007. I started with 5 mg in the morning and after a week raised to 5 mg in the morning and 5 mg at noon. I held this for a week and raised again to 15 mg. I began to improve little by little, but not enough. I either needed more HC, or I would need to find a way to extend what I was taking.
I reread the book Adrenal Fatigue, the 21st Century Stress Syndrome by Dr. James Wilson. Recommended in this book are several supplements, which I decided to try. Adaptogenic herbs were among them. Adaptogenic herbs extend and level out cortisol in the body. If you have too much cortisol they tend to lower it. But if you have low cortisol, as I do, these herbs serve to extend the cortisol and keep it more level so that it does not rise and fall. I felt this would be a good thing to try, since taking HC has always caused me to feel a drop in cortisol levels when I am due for the next dose. I also wanted to see if I could get by with less HC this time if I could make it last longer.
I began an herb called Ashwagandha, taking just one 500 mg capsule in the morning. When I felt I was tolerating that okay, I added a capsule of Siberian Ginseng (Eleuthero), 500 mg as well. Next I added a capsule of licorice, 450 mg. In between those, I had added a capsule of Ginko Biloba, not an adaptogenic herb, but one that increases the blood supply to the brain and makes your mind sharper. I added this at lunchtime as I had the most problem concentrating after lunch.
Once I had these in place, I began to REALLY notice I was feeling better. I was no longer having stiffness and aching joints when I woke in the morning. I could again concentrate in the afternoons. I added another capsule of Siberian Ginseng at noon and another Ashwagandha at suppertime. Now I felt that I was getting somewhere. I noticed that I was no longer feeling the sharp drop of cortisol when I was nearing time for another dose of HC. And I could even forget my HC for an hour and still not notice..this was unheard of before.
I have now been back on HC for nearly 8 weeks and the adaptogenic herbs for maybe half that time. I feel that the herbs are helping a great deal. I lowered my HC to 12.5 mg a couple of weeks ago, but am in no hurry at all to wean further. I will do it when I am ready.
I am feeling much better than before. I even have days now where I am motivated to do things again. I am having occasional days where I am too tired to do much of anything as well. But those are getting fewer all the time.
In summary, I was well after weaning completely off HC for 8 weeks total. I did not do anything at all to support my adrenals and was falsely confident that all was well because I had very little stress for most of that time. When high stress again came around, I was thrown for a loop. If I had it to do over again, I would GENEROUSLY stress dose for at least a year when things came up. I would have been on the adaptogenic herbs as well.
Now I do have a chance to do this over again. I will keep you posted.
Part Three: after trying to stay off HC, Missy finds out she has to be on it as well as treat other issues.
It has been quite awhile since I have added to the page “Missy’s Story” and I thought you would like to know that I am currently under the care of a Broda Barnes doctor. He has discovered that I do have adrenal insufficiency and prescribed Cortef (brand name of hydrocortisone) and is testing all my hormones. I am low on quite a few of them plus have several deficiencies in vitamins and minerals such as vitamin D, Vitamin B12, magnesium, iron, iodine, calcium, potassium, sodium and so on. I am allergic to several molds and am giving myself shots to desensitize me to those. He is also treating me for candida. A year ago, it was discovered by my primary care physician that I have gluten intolerance, possibly celiac, and chronic Epstein Barr virus.
So you can see it was always way more than just adrenals! I just could not deal with all that nor figure it out on my own so I am glad I have found a doctor who knows what he is doing with all this. My current doctor is hopeful that when everything is addressed, that the load will be off the adrenals and hopefully they might recover.
The worst part to me is that my ACTH has been low for the past two years: lab result 12 and this year, 10. I don’t know that ACTH can come up, but we’ll see. And if it doesn’t, this doctor has no problem with letting me stay on HC for as long as needed or forever. I know I have tried everything to get them to work, so whatever happens is fine with me.
I guess I should say that I spent more than a year before seeing this doctor (Feb 2008-April 2009) just going to a nutritionist to see if she could keep me off HC with her supplements and dietary recommendations. I have to say it did not work, though she was very good for me to learn how to eat better and to know what my body can and cannot tolerate. She is actually the one who found that I have gluten intolerance and I then was tested via Enterolab to make sure. So it wasn’t wasted time, but during that time I just got worse and worse with my adrenals..so I had to move on. I was off HC for a year and 4 months this time and some of it was very hard. The fatigue was terrible..as was the stress intolerance and anxiety. But I just wanted to see if it was possible to stay off HC with the right natural supplements and care in diet… I think those things are good, but not a substitute for HC when needed. The one thing that kept me afloat during the past year was licorice root..large doses of it would keep me from crashing so badly. I never had a problem with it and would sip it in my water all day long during stressful times.