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Addison's Disease Message Board

Addison's Disease Board Index

Hey everyone,

I’m a 26 year old Canadian boy that needs help… to be honest, I’ve needed help for the last three years but recently things are coming to a breaking point. I’m just writing to get my story across more than anything. I appreciate any of those who are willing to read obviously.

To make a long story short, about four years ago I had a terrible run that lasted about two years. It began with cystic acne that scarred me, where I turned to Accutane, which in turn left me with almost every possible side affect on the back of that package. I also got heavy into street drugs, I was smoking a lot, not eating anything, skateboarding like a maniac, not sleeping, until a depressive crash which left my immune system in tatters it seemed (I was picking up easy infections). I was on my own living in Toronto and I really crashed at the end.

I saw countless doctors near the end because I wasn’t the same. I don’t want to name too many symptoms because that’s what I think confused the many, the numerous doctors I “waited” to see. Everything was so cloudy to me – in fact I’ve spent the last three years just going through every possible condition one by one. Countless research hours… I know my body so well right now. I’ve had to do this because I’ve been labeled everything from depressant, to psychotic to bipolar (latest). In fact I’m on Seroquel and I hate the stuff. The only thing it does is help me sleep. But in the end, it does nothing for me mentally (much like any other anti-whatever medication I’ve been on). I mean I’m a smart kid and I know well enough to stop and say, “Wait a minute, this is not Bipolar. Perhaps it’s a case of the symptom being the cause?” The problem as I’ve understood it is that many doctors don’t see it that way. Every doctor I went to see has told me that the fatigue is a “symptom” of the depression/brain fog/whatever else. All this time I’ve been chasing my own tail. The only slight sign of relief I have found in the last three years was a CPAP machine for my sleep apnea – which I had to self diagnose once again. Yes that’s right, I also seemed to have picked up moderate sleep apnea somewhere in the last three years. The help from CPAP is noticeable but it does nothing for my long term exhaustion. I will never forget what the sleep doctor said to me when I walked into her office awaiting my sleep test results. She looked at the results on paper and looked surprised when she said, “I would have thought that these results were for a 60 year old bigger man." I mean I only weigh 160 pounds at 6 foot (I have to watch my diet). Regardless…

What I have is significant (if not extreme) adrenal exhaustion at 26. I myself, have had to self diagnose through years of isolation. It’s a friggin’ tragedy!!! I haven’t even gone to see a doctor yet and I know in my heart 110% this is what it is. I have all of the symptoms pretty severe in fact. How did I know this is what I had? For those interested, I recently started at the cortisol level. I have always had a fat belly area despite being so thin. It’s so abnormal at 26 I must say (especially considering I keep a good diet now and don’t drink a lot)… and it’s been this way only since the crash… and it’s not your typical fat, it seems to be loose (hard to describe). Eww, sorry. So anyways, I began looking into why I could possibly have this, and I read much about males and cortisol levels relating to bigger stomach areas. Knowing that I don’t respond (and its getting worse) to stress (in fact it’s almost crippling now), I thought the simple answer was to lower cortisol. After countless hours of research on this (because I don’t like to jump to conclusions anymore), I realized that you cannot directly lower cortisol levels as this is part of the negative feedback loop of the HPA-Axis. I also realized that a healthy balance of cortisol is actually needed for proper health but that having too much was dangerous. So I immediately assumed that I had too much cortisol, but how would I correct the HPA-Axis? From here I hit a roadblock. There isn’t much research on correcting a way out of whack HPA-Axis without some pretty heavy duty meds (which may or may not work). Anyways from here I stumbled across Dr. Golan and his subsequent section on Adrenal Exhaustion. I cannot get over how much weight left my shoulders when I read this. Every single symptom I share:

Fatigue, lethargy
o Lack of energy in the mornings, and also in the afternoon between 3 and 5 pm
o Often feel tired between 9 and 10 pm, but resist going to bed
• Lightheadedness (including dizziness and fainting) when rising from a sitting or laying-down position
• Lowered blood pressure and blood sugar
• Difficulty concentrating or remembering (brain fog)
• Consistently feeling unwell or difficulty recovering from infections
• Craving either salty or sugary foods to keep going
• Unexplained hair loss
• Nausea
• Alternating constipation and diarrhea
• Mild depression
• Decreased sex drive
• Sleep difficulties
• Unexplained pain in the upper back or neck
• Increased symptoms of PMS for women – periods are heavy and then stop (or almost stop) on the 4th day, only to start flow again on the 5th or 6th day
• Tendency to gain weight and inability to lose it – especially around the waist
• High frequency of getting the flu and other respiratory diseases – plus a tendency for them to last longer than usual

Almost everything above – was me. Each of which were applicable, becoming more and more extreme. It’s to the point where I’m running on sheer determination if that is possible. It’s to the point where I realize now that it all makes sense – what with the year plus of time just running my body into the ground. But the point is, I’ve never once had this suggestion from countless, countless doctors. And now, because of this (and I don’t care because I’m allowed to blame the system at this point), I have to go through my own wedding in two weeks and my own honeymoon, feeling more run down than ever. Living in Canada, things like DHEA are not readily available and to find a doctor that will look for this sort of thing was like pulling teeth. I have finally found and booked with one, albeit I have to wait another two months to get any sort of direction on this illness. I even wonder if part of the reason I have sleep apnea is because my body is just way to tired to even keep my lungs open to breathe at night. Anyways, I will definitely be producing reports along the way. I just wish this time around, I could get the direction and begin the path to wellness. But from what I understand it’s a long path… I just hope this isn’t more serious than I’m thinking it is at this point. I mean I know I am feeling like breaking down any moment, and I know this is a desperate situation, I just wonder how much damage has been done in the last three years of misdiagnosis. I don’t know enough about my adrenal situation/Addison's at this point but what I do know is that I used to have all the energy in the world to run for days without sleep. Now I can’t seem to do anything…

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