Hi Fismen,
I REALLY hope you see this, as I just registered to reply to this thread.
Let me tell you, you sound like a clone of me, I have almost all your symptoms, plus more!
I have been ill with chronic fatigue plus a hundred other symptoms for about
4 years now, and for nearly a year I thought I had adrenal insufficiency. I actually was 99% convinced I had Addison's disease, despite how rare it is, because the symptoms fit to a T. Even the pathognomic skin changes. I came to the same conclusion as you, that all my symptoms pointed to a low cortisol state. And just like you, I finally got my cortisol tested (at 8am) and lo and behold, it was elevated, at just over the top of the normal range.
Was dumbfounded at that, but somewhat relieved to see that Addison's was effectively ruled out. I had been researching medical journals like crazy for months, and I know how horrible of a disease it really is.
Now I went back to researching and researching... a few months later, after a sudden onset of weird shortness of breath and cardiac symptoms, I finally came upon The One True Cause. I found my answer. Called Cedars-Sinai in L.A. and made an appointment. One month later the brilliant doctors there confirmed I did find the right answer: I have Ehlers-Danlos Syndrome type III causing Postural Orthostatic Tachycardia Syndrome (POTS).
The Ehlers-Danlos itself causes me lots of physical joint and muscle pain, but really the worst symptoms come from the POTS. That's what really affects my day-to-day feelings. POTS has many causes; EDS is just one cause and it is not the most common one. POTS is much more common overall than EDS.
You can find a great overview of POTS on dinet.org. I bolded your symptoms here which really stand out as POTS-like to me.
" I filled the void with online video-games. These games stressed me out a lot,
(I get 150+ pulse in pressured situations and my body fires up all cylinders even though I'm sitting still in my chair trying to relax) and if I play for a prolonged time I feel bad for hours or days later. Stupid as I am, I ignored this and kept playing which probably halted my progress a lot.
The symptoms I'm currently stuck with at rest, are mainly:
Clumsy, Brain fog, Can't concentrate, Restlessness even when tired,
Bad memory, Confusion, Dizziness, Fatigue, Feeling better after 8 pm,
Heart palpitations,Hypoglycemia (not a problem after I started to eat ketogenic),
Inability to focus, Blurry vision, Bad night vision,
Inability to handle stress, Inability to interact with others, Irritable, Rage or sudden angry outburst, Overreacting, Paranoid, No patience, Worsening of symptoms after hard exercise (although I feel really good during and the first 2-3 hours after, then I crash),
Worsening of symptoms after psychological stress, high and pounding heart-rate from small stress like walking up the stairs.Symptoms during stress:
high heart-rate, pounding heartbeat, "heavy-head", irritable, outbursts. However, I get better memory and clearer head, less clumsy and so on.
Symptoms after some hours after stress: Worsening of the symptoms at rest plus elevated HR and "heavy-headed"..""
Especially the elevated heart rate from walking up the stairs, and the video games thing (your body is at rest, but your mind sees stressful things going on, and your heart rate goes inappropriately high). That is EXACTLY what POTS does. My heart rate lying down is usually in the 80s but one time (for example) I was lying completely flat and watching one of the last few episodes of Breaking Bad and my heart rate went up over 120 during a very tense scene. Knowing it was just POTS, I found it kind of funny actually...
POTS also explains why cortisol is a bit elevated. It makes sense. Your body isn't pumping enough blood to the right places and your heart rate is too high. Your body is literally freaking out at this, so your adrenals try to compensate by shooting out extra epinephrine and cortisol. Have you ever had a panic attack? POTS basically mimicks ALL the physical symptoms of anxiety, even if you aren't mentally anxious. And if you are anxious, the physical symptoms intensify further. It's like a feedback loop. Surprise surprise, people who actually have POTS are almost always misdiagnosed with an anxiety/panic disorder first. Doctors love to say "it's all in your head" so they can settle on the easiest explanation.
To drive it home, here is a list of adrenal insufficiency symptoms. I have bolded the same symptoms seen in POTS.
general weakness
profound fatigue
lightheadedness
dizziness
orthostatic hypotension (actually a separate condition from POTS, but often occurs alongside it)
rapid pulse (tachycardia) (the central symptom)
dark skin (first noted on hands and face)
black freckles
bluish-black discoloration around the nipples, mouth, rectum, scrotum, or vagina
weight loss
dehydration
loss of appetite
intense salt craving muscle weakness
nausea
vomiting
diarrhea
intolerance to cold
sweatingSo, the only thing I can't explain is skin changes, as they don't really have anything to do with POTS, but I don't think you mentioned those anyway.
Anyway, if you read this, or someone else comes along and reads this and has that lightbulb moment here's some advice for getting diagnosed. To actually get medication to control POTS a doctor will probably insist on doing a Tilt Table test first. This test is expensive because it is usually done in a hospital setting and really a few "orthostatics" tests (which can be done by a nurse in any doctor's office) should be plenty good enough, but blah blah ~insurance purposes~ B.S. or whatever. Unfortunately some doctors have not even heard of POTS, and even if they have heard of it may say they don't know enough about
it and can't diagnose it. If you have a good primary care doctor (a.k.a GP) you can try your luck there, explain your symptoms emphasizing the dizziness and tachycardia and say you think you have POTS, maybe bring him/her some credible literature on it. If you're lucky they can order a TTT for you. Or if you are able, you can try to see a cardiologist to get a TTT. Another warning, don't assume all cardiologists know anything about
POTS. You have to ask how experienced they are in diagnosing autonomic disorders, particularly POTS. Pray you don't get an a-hole who just tells you after the positive test result "whatever, just eat more salt". Yes eating/drinking a ton of salt and water does help but usually to control it effectively you need some type of prescript
ion like beta blockers.
Well this has gotten really long and I ought to get going. I hope someone is helped by this. Just like you I was assuming there I must have some hormonal or biochemical deficiency, and if I just supplemented that it would go away. Now learning I have this particular chronic condition, EDS+POTS, there isn't a magical single pill that will help everything (like Addison's or hypothyroidism) and that's really sad. Though it is very complex there are many ways to manage it and it does get better, and I have hope I will continue to improve. I hope you see improvements too, whatever your root cause is found to be.
Post Edited (username1) : 11/15/2013 11:26:31 PM (GMT-7)