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Addison's Disease Message Board


Addison's Disease Board Index


Hi Dial,

I've been following your thread with interest. Many of your problems sound SO close to what I've been going through...with some differences of course. I offer a little of my story and offer some suggestions at the bottom that might be of a little help to you.

For my adult life my body temperature was on the low side. I always remember nurses taking my temperature twice at the doctor's office and looking a little surprised (never said anything to me though), and only when I had the flu or cold did I approach 98.6. My sex drive has always been on the low side compared to "jocks", my muscle build not very great. I have always felt a little spaced and sometimes dizzy as well, poor focus at school.

At about the age of 42 or so my doctor noted my cholesterol and BP were quite high, so he put me on a statin and BP med. Around that time I was feeling even lower energy than usual, had an even harder time functioning (sex drive down to about zero at this point). For many many months I had uncharacteristic bad headaches and almost the complete inability to function at work, I had to cut my schedule back. Out of desperation I switched medical groups and the new doctors were no help either.

Around that time one day at work my heart started doing flip flops and I experienced rapid heart beat. Turned out I was having a heart attack at the age of 46...too young I thought. I met my first cardiologist at that point at the ER (I drove myself there as I had no idea what was happening to me)...a great doctor who helped me through my two heart stents and a difficult procedure.

That was 4 years ago and since then I have read many books, thousands of articles, many message boards and groups, websites, etc. The two endos I have seen have been an absolute incompetent joke. The first one I met told me I had Grave's disease and put me on anti-thyroid drugs for almost two months...nearly killed me as my TSH skyrocketed and my body went numb (and she tried to cover it up). The second said that I was absolutely normal, that I just was depressed and needed Prozac.

I finally sought out an anti-aging doctor that was recommended to me from several guys on another message board. It was a five hour drive....each way, but I saw him twice. For $475 he reviewed all my labs and medical records and spent two intense hours with me, the second visit one FULL hour at $250. His findings? That I was extremely hypothyroid, probably for my entire adult life anyway, my testosterone (275) was the same as a healthy group of men that average 105 years old (yup), that I had mild myxedema (a bloating of skin tissues and thick skin because of many years of hypothyroidism), my adrenals were "in a ditch" and fatigued...and maybe they might never come back. He also did that little rubber hammer on my knee and a couple of other areas to check reaction time...you might have seen that done on T.V. My reactions were SO slow it was almost comical, he would hit the hammer and I swear my leg would jerk about 10 seconds later. He said that was typical of hormonal insufficiency for many years. My wife was sitting right there and said later that she would not have believed that unless she had seen it with her own eyes....and wonders how I can navigate the Los Angeles freeways....whee!

Over two visits he prescribed injectable testosterone I self inject twice a week with a tiny needle, low dose Arimidex (an anti estrogen that limits how much the injectable T turns into estrogen by body fat), Cortef, a vitamin regimen (that he does not sell), niacin, high dose fish oil, Tri-Chromium (helps with sugar problems), CoQ10, melatonin, B complex, etc, etc.

I feel lots better, I still have bad days though and I honestly don't feel 21 again, but he has kept me out of the hospital. I have transfered to another anti-aging doctor that is only a two hour drive for me, this one a D.O., with good results. He will prescribe anything I want (that won't kill me), order any test I want, he says he does not look at labs exclusively, that he wants his patients to feel well and he will think outside the box. My temperature is 98.6 perfectly, my testosterone is 783 (that of a young man), my thyroid is topped off right at the top of range, my cholesterol cut in half without statins. Of course insurance does not cover one cent of either of these doctors!

My opinion is that you are flat out running dry out of hormones. Your low testosterone (you have the testosterone of a dead corpse honestly), is stressing out your adrenals. Testosterone is also responsible somewhat for blood sugar lowering....and you know your problem with that! Testosterone is also the male hormone that limits stress, it's the hormone that allows heroes like yourself and firemen to save people, run into burning buildings, etc, when everybody else is running the other direction screaming. Testosterone limits stress, so since you are low your adrenals are running overtime to make up the difference and have become burnt out. You need testosterone, injections work best, at least once a week. They call it an endocrine SYSTEM for a reason, and all your hormones and sex hormones have to be looked at.

I would take your temperature with one of those glass alcohol thermometers for 10-12 minutes. When you awake it should be at least 97.8 right when you open your eyes. By 3pm it better be 98.6 or you have low thyroid too.

You need a better doctor.....not an endo quack. You need a 1-2 hour visit with a good doctor.

I look forward to see how you are doing Dial!

Neil





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