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Addison's Disease Message Board


Addison's Disease Board Index


Hi\I am a 24 year old male and I have been sick for 8 months. I am a Police Officer and now my Career is about to be put on hold. In October 2006 my life started to go upside down. I was standing on a domestic call at work when I suddenly became very dizzy. I began to feel like I couldnt breath very well and had to go home. when I got home I began to get tremors and shake. I went to the emergancy room where I was tested and sent home with no relief. I have been to the Emergancy room a total of 9 times since that night, and has had every test known to man conducted. CT of brain, heart, lungs, ETC. all came back normal. I had the following symptoms: Light headed, dizzyness, shortness of breath, tremors, extreme exhaustion, always tired, heart palpatations, anxiety, and more. I had to take a medical leave from work due to the fact it was unsafe for me and I couldnt function. In a 3 month period I lost 30 pounds! One day I was drinking some tea with honey, I suddenly began to feel light headed and dizzy. My brother, who has a diabetic son mention I looked as if I was going "high." I bought a glucose monitor and found my sugars hitting 195 and 200 off a cup of Mountain Dew! this was rare b/c I would drink soda like water when on Grave yard shift. I went to a Endo who tested me and agreed that my sugar was abnormally high, but my A1C was normal so he said "I believe your becoming a diabetic, come back when your full blown and hitting 200 all the time" I was shocked and very frustrated.

I went to a second Endo who said that was nonsense and started me from scratch. They found some interesting things. Yes my sugars were high, but why? they stated they thought it was due to something else. Well it turns out My Cortisol is low, on two different 8:00 AM test it read at 2.3, they stated it should be 5 or higher. Also they found my testosterone was low as well at 199, they stated it should be 400 or higher. They stated due to low Cortisol, and testosterone, this would explain why my insuline is not breaking the sugars in my body down thus causing it to go high. So great now what??? I have taken a Cortisol stim test to see if I have Addisons but I suspect it will come back stating "normal" so I must figure out the best form of treatment. I tried Andro Gel and Andro derm for the testosterone problem, but those medications made me sick. I went to a Certain "famous" clinic in Scottsdale and saw a Doctor who said "your levels are fine, you have Anxiety" I asked him well if i have Anxiety, couldnt it be a biproduct of another condition? he stated "no" I found this hard to believe and reasearched on my own. I found exstensive creditable sites with very acredited doctors on the subject of Adrenal exhaustion, and its symptoms, which I had almost all of them. one symptom most sites listed was Anxiety! I am very Frustrated and dont know where to turn for help. has any one else had these problems? or heard of such a thing?
thanks
Those are very common symptoms with pituitary problems. It's very unusual to have low cortisol and low testosterone without having a malfunctioning pituitary. Did you have blood tests for the hormones LH and FSH? These will show you why your testosterone is low.

You should also have blood tests for thyroid, T3, T4, prolactin, and IGF-1. If you do have a pituitary problem then most likely low thyroid is associated as well.

Low cortisol, especially with dizzy symptoms can be fatal so you need to be tested for adrenal reserve as soon as possible.
You could also have a cyclical tumor... those are hard to test for as you will have normal tests some times and abnormal test at other times. I had a cyclical cushing's tumor and was sicker than a dog but my tests were normal or oddly all over the place.
It does not sound like you got enough testing.
My adrenal CT scans (as well as an MRI) came back normal however when they were removed, they were at least 2x normal size and one was nodular. If you do some research, you will find that adrenal scans are not known for accuracy.

As well, CTs are not accurate for pituitary unless the lesion is huge. Even an MRI will miss up to 40% of lesions. CTs are not what is usually ordered for a pituitary so is there a reason why you cannot have an MRI?

I had Cushing's and a prolactinoma. My levels were more normal than abnormal yet I was really sick. My physical symptoms were far worse than my labwork said and after surgery, my pathology confirmed it all. I am now disabled from the effects of the Cushing's even though all the doctors said it was mild as it was hiding another disease (which was using up all the cortisol). It took many many years to get help so it takes persistence to get the testing especially when you appear borderline but in the end, I am glad I was a pain in the ...
Look, 40% of MRIs show normal when they are not... better off to get a surgeon to look at it as radiologists cannot look at the pea-sized thing and find the dang lesions... plus the lesions can be 3mm and the cuts of the MRIs are 3mm - so you see an issue here? I had a tumor hide for 12 years ! 12 Years!!!! Lucky I had another (surgery was a two-fer) but still it took me 12 years to get to surgery.

Those hormone places can do more damage than good. Sure you can go and get DHEA over the counter... but it will throw your estrogen, testosterone and your thyroid out of wack... nice.... that is why it is not available OTC in other countries. Hormones are a SYSTEM - which even the friggen doctors fail to realize at times so if one if off, you really need to look at them all as it is like dominos set up, you just cannot push down one without setting off a chain reaction.

My tests were largely normal for years and now I am disabled for - my hormones! I had tumors in my neck and my head but for an odd reason, the tests did not pick it up until my body was wrecked. I am not the only person like this. It took a lot of testing to finally find out what was going on - and so you need to find a doctor who will keep testing you.

It is all very hard... but at least now acupuncture is helping me, conventional hormonal therapy with a neuro-endocrinologist who tests all my hormones. Have you seen a rheumatologist? They do a lot of testing - ANA, sed, etc - that can point to things... do you have auto-immue issues?
As of now all I know is, my Cortisol was tested at a 2.3,2.9,4
0. on different occasions, all very low. My testosterone was at a 199. My blood sugars go high when I have carbs, making me feel foggy in the head, dizzy, and sick. I hit 200 on 3 strawberrys!!! 200! I will come down eventually, but my body seems to not be utilizing my insulin properly. I need to get retested to see where I am now. I need to see a ruhmatologist, I agree. Everything so far seems to be Endo related, or immune related. Im desperate! Everyone thinks im faking my illness b/c some days im fine and others im out for the count. This basically means im not capable of holding a job, b/c im not reliable. Is there such a thing as a pituatary expert? what is a Neuro endo? I appreciate you guys helping me, and being supportive.
There are pituitary centers at many universities - they usually want a referral from a doctor and a known issue. They are known as neuro-endocrinologists. Usually too you will be sent to a neuro-ophthomologist for eye tests as pit tumors are right by the optic nerves and many times the first symptoms is visual (or rather, the first ACCEPTED symptom is visual as the smptoms as so.. vague.

Wacked out testosterone is typical of pituitary problems. Mine was high. I know that my friends are either super high or super low - and that is male or female.

Due to the board restrictions, cannot tell you much, but hopefully you can find a neuro-endocrine center or pituitary center near you... but frankly, I went to one near me (actually several) and got blown off, so I went to another coast, and got treated right off, finally ending 12 years of #$*(@_! but it was too late, my body was destroyed. And the tumor grew right back, too.
I have pituitary and adrenal pathology that both show that the pituitary was the issue. So yes, I have proof that the pituitary was my problem. I went to Los Angeles.
My pituitary tumor was found in 1992. I was told many times by esteemed hospitals in NYC to ignore it. I went to a well-known place in the midwest, again, I was told to ignore it. I progressively got sicker and sicker, got my thyroid removed (3 nodules there), then finally in 2004, finally got fed up, went to LA, got diagnosed, had pit surgery where they found TWO tumors, but the Cushing's one (which was a ACTH secreting corticotroph hyperplasia) grew back so 2 years later, I had my adrenals removed. Now it was revealed it was hiding and treating a neuro-muscular disease they think so as soon as the my self-treating high steroid source left, my muscles weakened up even more and I am disabled. I am panhypopituitary. Ignoring my pit tumor cost me my health. So trying to help others not get in the same boat I am in.
Thanks for the ideas! I found a clinic here in Scottsdale that specializes in endo, and metabolism. They deal with complicated issues like me. They cover pituatary disorders as well. Insurance is giving me the run around though, so we'll see.
Sorry Nicole - I did not see your question to me!
Both my shoulders are frozen so I have arm limits. I have weak legs what they call proximal weakness (getting up, stairs). They say I have myasthenia gravis. I have trouble swallowing and talking at times as well as I cannot stand or walk for prolonged periods. No, my life is not normal and I have emergency supplies at home as well, the police and EMS in town have been given a key so they can get in the house as when I crash, I go fast.
I am trying to exercise a bit but it only makes me more tired - grocery stores seem to be the worst as making decisions AND lifting (a gallon of milk is just about all I can barely do- talk about wimp... agh) and it is home for a forced nap. My hubby has to do all the big shopping. I go for small items or short trips now only.

Dial - heat gets to me too - but it got to me when I had high cortisol as well... I would sweat up a storm for both. I just think when your hormones are off, heat is not your friend.
rumpled,


The doctors don't know what's wrong with me too, yet I asked the neurologist that my symptoms are like Myasthenia Gravis.


My test results will come back tomorrow.


I don't wish to hijack this post yet, I am like DIAL I don't know what I have for the past year, yet the part you said you can't swallow, weak muscle, and I am having some respiratory pressure today - I can't breath well.


Could you tell me more about your symptoms?


I wonder if DIAL has been tested for Myasthenia Gravis as well.
Nexis - proximal weakness, exercise intolerance, blood pooling in my legs when I stand, fatigue, difficulty swallowing, difficulty speaking, eyes easily cross... the more I do, the weaker I become.
It is said to be a snowflake - different in everyone - I do not have the ocular ptosis that is typical. I do not have any of the anti-bodies.
I don't think doctors do EMGs as a matter of course nor the other blood work - but all that was negative in my - only the other more detailed testing showed abnormalities (SFEMG, muscle biopsy).
I hope you find what you have and the meds work for you!
DIAL have you looked in to Myasthenia Gravis? This is something to consider doing research into just for personal data for now...


I got my test done today for Myasthenia Gravis, my muscle strength doubled when the medication was shot through the IV, it felt as if my body felt so much lighter, and will wait for the blood test result if I test positive for the antibodies on Friday.


At this point, my eyes are half closed from all the muscle weakness and chronic fatigue, and can't walk down the stairs.
well now im lost, my last lab test showed my cortisol and testosteron was up in the good range now. I still feel sick! so if its not low now, im lost as to what is wrong with me.....:(
Ah Dial - I do feel for you... for I was in hormone hades and had my hormones jump up and down...
Do keep testing - patterns will emerge - as frustrating as that is. Do you have a doc that will keep testing you?
I have Addisons and I get my blood tested frequently. It always comes back as normal even though I experiance symptoms every day. I was a registered nurse fresh out of college when I got diagnosed. Eventually I got to the point that it almost disabled me and I quit my job. This Addisons thing is almost impossible to explain and it seems like nobody understands. I do however have my good days and I look forward to those, even though they don't happen very frequently. I know how it is just being diagnosed, but mentally it has took me years to accept it.

Chris
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
[QUOTE=DIAL;3623152]Hi\I am a 24 year old male and I have been sick for 8 months. I am a Police Officer and now my Career is about to be put on hold. In October 2006 my life started to go upside down. I was standing on a domestic call at work when I suddenly became very dizzy. I began to feel like I couldnt breath very well and had to go home. when I got home I began to get tremors and shake. I went to the emergancy room where I was tested and sent home with no relief.

So great now what??? I have taken a Cortisol stim test to see if I have Addisons but I suspect it will come back stating "normal" so I must figure out the best form of treatment. I tried Andro Gel and Andro derm for the testosterone problem, but those medications made me sick. I went to a Certain "famous" clinic in Scottsdale and saw a Doctor who said "your levels are fine, you have Anxiety" I asked him well if i have Anxiety, couldnt it be a biproduct of another condition? he stated "no"
thanks[/QUOTE]

Hi Dial,

Just my opinion on the police call above you described above. You were placed in a stressful situation, but you have essentially no testosterone to limit the stress to your adrenals. Your adrenals are toast from doing this month after month, they have little left to give. They are barely just keeping you on your feet and there is little left from you doing a face plant right on the sidewalk (Addisonian crisis). I have been there, not with a uniform and a gun, but at my work been there standing there listening to someone talk and just knowing any second I am going to collapse on the ground.

From my experience endo's only understand and recognize severe Addisonian crisis or coma, even then it's only a 50/50 bet if they figure it out before you die (you can die quick if you get to that point). They mostly treat diabetes (and IMO they do a poor job and "manage" these poor diabetes into the grave). They so rarely see acute Addisonion crisis because most people with borderline Addison's just shuffle along and limit stress they best they can, or retire and stay at home. They are usually pumped full of Prozac so they forget how good they used to feel.

You could try this. You can buy over the over-the-counter hydro cortisone cream. You can measure out like a quarter teaspoon and every morning at 6am rub some into your inner arm. Be sure to measure it out exactly the same. Try that for a few days and see how you feel. If it starts to help you could try a smaller amount in the afternoon as well. Since HC is one of the first hormones you need to correct, you will start on the road to treatment. I would also start doing the oral temperature test as well to see how your thyroid is doing. You should know that you should start out slow, you may have thyroid "pooled" in your blood that is not getting into the cells because of your adrenal problems. Too much HC will allow suddenly too much thyroid to become "free" at once, and you may get a fast pulse. So go slow at first to make sure.

Adrenal status is so critical you need to take steps first to correct this. I don't believe you were allergic to the testosterone gel that was prescribed to you, you just were not ready to handle it. Testosterone is "bio-identical" and to say you are allergic to it means you are allergic to your private parts! Naw....you just need to start with your adrenals for a few weeks first.

I would also buy some B-100 complex tabs, fish oil, and oil based vitamin D3. These would be good for starters along with a good multi. Take 2 of the fish oil morning and 2 at night, this will help with triglycerides and sugar. My triglycerides were close to 200, now they test at 63. The vitamin D3 is a steroid pro hormone that can help with blood pressure, the best way is to get blood tested (25-hydrox-D) test, but it would be safe to start with 2,000iu a day at first.

But one things for sure, you cannot ignore this. Testosterone is heart protective for men (just like sex hormones are protective for women). Testosterone will help you keep your muscle, prevent anemia, keep you calm, and keep you from having a heart attack at 46 like I did!

Neil
Dial, I hope you are still reading these becuase it looks as if the last entry was a couple of months ago. I too am a police officer and when i read your symptoms, I was shocked. I woke up 3 and a half years ago and had everything you wrote. I feel like i am on the verge of figuring it out but it has been a long and hard road. I am not out of the woods yet, but hopefully soon. I would like to find out your status and how things are going now. I know exactly how it feels to tell the people around you that you feel this way and no one believes you because you look normal from the outside. I believe that my symptoms come from a "perfect storm" like scenario that made my body crash. I have been to every doc you can imagine with the same crap answers. but I asure you that you are not crazy and that there is something wrong. the one thing that i always say, is that I know when I feel off and it's not in my head. Like I said I would like to know what your status is with everyting. Although i was not Tasered, I went through a very demanding time that required non stop stress, both physical and emotional, for an extended period of time (about 4 years). i believe that along with other factors like, over exercising, excessive worrying, sleep problems due to shift work, heavy metal toxicity, as well as others have all contributed to my problem. But I am not sure. It is very hard to wait, but just know this, somehow you, me and others like us will get better. just don't accept anything else. I hope you read this.

mike





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