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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…
I have included how I think each question is related to hormones. Remember a single test can be normal but all hormones are pulsed so one test isnt diagnostic of anything. Of course each symptom can also be related to other disease activity so one or two aren't particularly diagnostic either. Many together start to make the pattern more clear.

1. Do you wake up in the morning with a backache that goes away as the day progresses? ** No I can't say as I do although I have lower back pains other times in the day, sometimes pretty bad

[low back pain can be a sign of low cortisol, morning back pain is particularly indicative]

2. Do you have sexual performance problems? ** For sure. My sex drive is a big fat zilch and I have a hard time maintaining an erection because I'm so tired and dsinterested usually.

[connected with: low testosterone, high prolactin, low cortisol, low DHEA also abnormal LH and FSH]

3. Do you have dry skin? Especially hands/feet? ** Yes to the dry skin. Notice more so, cold extremeties but they are also dry.

[low thyroid especially if you also have cold/heat intolerance, low cortisol is often related to night sweats]

4. Do you have heavy callouses on your feet, especially on the heal of your foot and side of your big toe? ** Not really no.

[very low thyroid]

5. Do you have a sore tongue especially after eating acid/salty foods and does it have a white coating on it, especially in the morning when you wake up? ** White coating yes, sore I wouldn't say too often no.

[yeast/fungal infection in the mouth]

6. Have you checked your body temperature immediately upon waking? If not, do it a few days and take the average. ** No but I know I'm extremely cold. I will measure soon.

[morning basal temperatures below 96F are a sign of low thyroid]

7. Do you have muscle/joint pains, especially in the knees when climbing stairs?** My knees are terrible. I've had pain in this area for a long time.

[low testosterone, low DHEA]

8. Do you have loose stool, not diahrea, but soft and not well formed? ** Yes absolutely.

[fungal/yeast infection]

9. Have you had any blows to your head, like in a car accident; around the time this all started? ** Perhaps, I mean I did get into a few scrums where I took some nast head shots but not sure if this is related.

[possible pituitary damage, depends on how often and how hard the blow, but one hard blow can do damage by causing bleeding]

10. Do you have a memory problem recalling events or things people said, but if they remind you about the event you can remember it well, as long as they keep supplying hints? ** I have a terrible memory, almost non-existent short and long.

[low testosterone, low growth hormone, low cortisol, the later 2 are also related to brain fog]

11. Do you have frequent stomach upset? ** Yeah

[fungal/yeasst infection in the gut...often caused by frequent use of antibiotics]

12. You mentioned having an inappropriate belly. Are your arms and legs unusually skinny considering how big your trunk is? ** My arms and legs are soooooo skinny.

[a classic sign of low growth hormone, especially when connected with low muscle mass]

13. If you look at your eyebrows, is the outer 1/3 over your eye missing or very light compared to the inner 2/3's? ** Not sure will have to check.

[low thyroid]

14. Has a doctor compared your blood pressure lying down and then immediately after you stand up? Was it different? ** Not sure.

[if the pressure is not the same = low cortisol]

15. Have you lost muscle strength? Specifically is it harder to open pickle jars, or to lift things that previously you could do with no problem? ** For sure.

[low testosterone, low growth hormone, low DHEA]

16. If you exercise does pain in your muscles cause you to stop or reduce your activity? Does the pain only go away if you stop completely? ** Just get more tired from exercise.

[low cortisol, low testosterone, low DHEA]

17. Are you having vision problems? Specifically, loss of night vision, change in color vision between your two eyes (ie: red in one eye isn't quite the same color as the other), or loss of peripheral vision. ** Big vision loss in the last year.

[pituitary adenoma or migraine]

18. Sometimes does just the thought of doing something requiring physical energy just make you so tired you don't do it even if its important? ** Huge complaint yes.

[low cortisol, low thyroid]

19. Have you noticed breathing problems almost like you feel you are getting asthma or do you have asthma of recent origin? ** I developed moderate to severe sleep apnea and I'm only 26 years old, weighing 160 pounds! They thought I should have been 60 years old when I came in.

[asthma = low DHEA, sleep apnea with no weight problems = low growth hormone]

20. You mentioned frequent infections. How many colds/flu did you get last year and how long did they last? Do they go into your chest and cause you to use antibiotics? ** Perhaps two or three. They run significant courses each time requiring antibiotics.

[low thyroid, low cortisol, low testosterone] {adding zinc, selenium and vitamin C as well as a multivitamin is a good idea..each adds a bit to your immune system}

21. How often are you taking antibiotics and have you ever taken antifungal prescription medicine? ** No.

[you should take anti fungal as well or at least take probiotics from a health food store]

22. Are you unusually tanned or have dark skin folds which seem inappropriate? ** Not really.

[means you probably don't have Addison's disease, but most likely have adrenal insufficiency caused by a pituitary problem]

23. Do you suffer from anxiety for no apparent reason? Do you have heart palpitations? Have you noticed your heart seemingly missing beats? ** Anxiety/panic attacks something fierece. Social paranoia.

[low thyroid combined with normal corisol and/or low growth hormone, low growth hormone also can cause apathy, self social isolation, fatigue and brain fog]

24. Have you had any abnormal blood tests? Or have all of them come back normal? ** Never really seen the reuslts so I cna't comment yet.

[ALWAYS get copies of every test you have so that if nothing else you can check how things are changing or inform new doctors about past test results]

25. Have you been tested for hepatitis, thyroid, diabetes, testosterone, prolactin or growth hormone?

[phone your GP and find out the test results and see what tests were actually done]

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