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.

NOVEMBER, 2006

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 21^st 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.

Missy

June, 2009
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. 

Missy