Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 -- the edginess and agitation is a sign of HYPERthyroidism -- too MUCH thyroid. I would think that if thyroid supplements make you jittery, then they're not the right solution for you. Your body is saying it already has enough thyroid, thankyouverymuch. There is a specific test for THYROID antibodies, and that is the test that I had. You shouldn't have any. My insurance company IME (of all things!) picked up that I had about 1 or 2, and the psychiatrist who picked it up (NOTE: the psychiatrist, not the internist) said that once you start making antibodies to thyroid, it's just going to get worse. My CFS doctor agreed, so we started supplements then. A year ago I stopped taking thyroid supplements in the mistaken belief that I couldn't go on Ampligen if I was also on thyroid (not true). I started feeling even worse than before -- couldn't even brush my teeth. I was a total mess. So I had another antibody test run -- it was now up to 75! I went back on cytomel, later in the fall even increasing it, and everything went back to normal (except the T4 count). If the IME doc hadn't warned me about it, I'm not sure how bad it would have gotten four years ago before we'd have tried testing for antibodies. Nobody thinks of it. As for adrenaline -- Dexedrine is pure adrenaline. If you have ADD (which I do), then Dex, or Ritalin (which works better for me), doesn't make you wired -- in fact, I can fall asleep on 20 mg. of Ritalin! It does help me with brain fog, plus the Hopkins doctors believe it helps with the NMH, so I try to take it during the day. But that is what dosing with adrenaline would be, I guess. The ADD rules for trying it is to start with a small dose -- perhaps 5 mg.; for a pwc it might even be smaller -- and increase by increments every couple of days. When you hit the point where it makes you jittery, you back off to the last level. It seems that it doesn't work at all until you hit JUST the right dose, and anything ABOVE just the right dose is too much adrenaline! That's the only way we've been able to figure out getting to the right dose, because it's not related to your body weight or severity of ADD or anything that's measurable. I would be really hesitant about self-dosing with adrenaline if you are a PWC unless there is evidence you have had lifelong ADD, or you and your doctor are really on top of your symptoms while on it. I have known PWC's to take it because it gets them wired and they can " do things " again -- well, we all know what happens after that -- big-time crash. But there does seem to be a higher incidence of ADD in CFS/M.E. patients and their families. (Actually, they suspect that ADD is caused by insufficient amounts of norepinephrine and dopamine; adrenaline, or epinephrine, is a second-best solution.) (Undiagnosed ADDers tend to learn to self-medicate by pushing their adrenals themselves -- that's also why we love to do things at the last minute -- they get an adrenaline rush and can focus better -- and are addicted to actiities like downhill skiing and riding rollercoasters, because it gets that adrenaline pumping away. I went rollercoastering last Friday -- what a treat! My son, also ADD, took me on all the new rollercoaster rides at Universal Studios in Orlando -- he has a pass, and when he's got the blues he just goes riding rollercoasters! -- I couldn't have done it a year ago, naturally. Cool to get to do it again!) The Straus-Demitrack research that was SUPPOSED to show that our cortisol production was too high, which is what they find in patients with major mood disorders (unipolar and bipolar depression), found instead that our cortisol production was too LOW. (Straus put off releasing those findings as long as he could ... then has tried to use it to bolster his claim that our problems are simply due to the way we handle " stress " ...) So some patients have been treated with low doses of cortisone. Now, that's one serious steroid. It's the one that makes people puffy. If you are on it, you have to have your bone density and eyes (can cause glaucoma) checked regularly, and there is the danger that your adrenals will shut down entirely and you will become totally vulnerable to disease. Which of course we don't need. The jury is out about VERY VERY low doses of cortisone. Straus's study was so statistically flawed it's useless, but at any rate he used higher doses of cortisone than doctors such as Goldstein and Teitlebaum do. I'd be curious if anybody here is on cortisone treatment. My mother-in-law's last year of life was made bearable because of cortisone -- she was even able to bowl again (she had rheumatoid arthritis and possibly lupus as well; she also had congestive heart failure, which is how she eventually was lost to us.) While on the cortisone, she didn't appear to me to be more vulnerable to illnesses -- but she was on a very very low dose. At any rate, at 75 the choice was hers and made sense to me (her last conversation was on the telephone, giggling with a friend about how they were going to be disobedient to their docs and drink champagne at a party the next day -- having her social life back was a miracle). I don't know how you would make this decision if you were a PWC. I think if I were to try low-dose cortisone (not necessary now), I would want a doctor who was sufficiently well-informed to know about the regular tests for bone density, glaucoma, and liver function, at the very least. (Note: florinef, which those of us with NMH take, is a type of steroid too, but not the same family as cortisone -- so it is not dangerous in the same way. Sometime patients read the description in the Physician's Desk Reference to drugs and get scared about it. Not the same thing.) Schweitzer mailto:schweit2@... Quote Link to comment Share on other sites More sharing options...
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