Discussions By Condition: I cannot get a diagnosis.

Various symptoms, no diagnosis

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Rosannhly
  • November 19, 2007
  • 04:58 PM

The main reason that I started to notice symptoms was my total inability to lose any weight. About 6 yrs ago, I had gone on the Atkin's Diet. I lost 12 lbs. in 6 weeks, which is relatively slow for the Atkin's Diet. After stopping the diet, I returned to eating normally and gained 40 lbs over the year. I was really not too concerned because I have never had a hard time losing weight in the past. I would diet and exercise and lose the weight with no problem. However, I have tried numerous times to lose weight over the past 6 yrs and am convinced that I am unable. I was always on the thinner side with watching my diet and exercise. It took me at least 2 yrs to realize that the weight just wasn't going to come off. Since that time, I have gone to multiple physicians to try to find an answer. I am a nurse. But let me tell you, the physcians made me feel like a hypochondriac. It is so hard to stay motivated on a diet and exercise plan when not even one pound comes off. I have dieted and gone to a gym for 2 1/2 hrs twice a week. I work as a nurse on a busy floor of a hospital for 12 hour shifts, 3-4 days per week. I am constantly on my feet at work. Even when I was not dieting, I would never eat more than 2500 calories per day. I have rode bike marathons, 80 miles on a bike and gained 10 pounds that week. So I started to research what could be causing this problem. I now am 210 lbs at 5 foot 7. I was never heavy. It is extremely frustrating and now depressing to me. I have other symptoms that I have noticed since. I have what looks to be vitiligo on my arms. This started on the sides of my face not long after the weight problems began. I went to an endocrinologist because I had been recently diagnosed with a neurological eye problem that could be a pituitary problem. The endocrinologist sent labs for hormones. My female hormone levels were actually good for my age. I am not perimenopausal according the the levels and I am 45 yrs old. However, my testosterone level was extremely low. The endocrinologist said that that level means nothing and that they only treat low testosterone in women if they have problems with their sex drive. Why did she even bother to check the testosterone level if it means nothing? My fasting cortisol level was also low and my insulin level and glucose levels were low. Then she checked my 24 urine for my adrenal hormones, my levels were high for all but she stated, "they aren't high enough to mean anything". I also have an overactive autonomic nervous system which controls the fight or flight response. This has been all of my life. I sweat alot, I blush and blotch when I am excited or nervous and I get overly angry very easily. It feels almost not in my control. I also have broken both elbows and both wrists in the past 9 yrs. I had never broken a bone until I was 36 yrs old. I cannot believe that this is all coincidence. Then someone at work mentioned Addison's disease because of some of my symptoms but I have weight gain not weight loss and I also have borderline high blood pressure which does not go with Addison's disease. I also have had many yrs of problems with my G.I. tract. I had been diagnosed with IBS and I had diverticulitis 4 yrs ago but more recently I had more like a colitis attack. I had a CT scan which showed diffuse colonic wall thickening and I had bleeding, abdominal pain and loose BM with blood. I was put on antibiotics but never really got a firm diagnosis from my GI doc. My brother has Chrohn's disease and my sister had MS, so I was concerned all of my problems may be something autoimmune. More recently someone mentioned that maybe I could have celiac disease. I was tested by blood work which had come back negative. However, my endoscopy showed something called eosinophilic esopagitis which is from food allergies, which could be related to wheat and celiac disease. I don't think that my GI doctor did a biopsy of my lower GI tract to check for this. I am so frustrated. My good friends who have seen my intensive struggle to lose weight are very supportive and keep telling me to keep trying to get answers from the doctors but it is embarrassing. I know that they look at me as though I am just eating too much. But something must connect all of this. Any ideas? I am sorry this is so lenghthy but I wanted to make sure I got the whole story in. Thanks to all.

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5 Replies:

  • Perhaps you've though this at the beginning of your search, but, have you been checked for thyroid hormone levels? Hypothyroidism is supposed to cause, among other things, an increase of weight. Sorry is this answer is too simple, but I just had to try. Best wishes
    cloudtop 3 Replies
    • November 21, 2007
    • 07:47 AM
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  • You certainly have alot of stuff going on, and alot of stuff like weight, bloodwork, hypertension and eyeproblem could be due to a pitituary problem. Do you have red strechmarks, thin skin or a hump at the base of your neck? All of these things including many of your symptoms can be caused by cushings disease. Your endo was totally wrong to blow you off after the bloodtest results. In cushings patients cortisol values tend to be the wrong way around. Instead of elevated values in the morning, they have elevated values at night. Morning values can therefor be normal or even low. It takes many people years to even get close to a diagnose, since doctors think it is so rare. Actually many people that have cushings are misdiagnosed with other things like PCOS. Ok.. with that said, I think you need to do more testing. You need to have your cortisol done in serum and salvia AM and PM. You should also repeat the 24 hr urine test and have your ACTH done with the serum cortisol. You can visit www.goodhormonehealth.com as well. This site belongs to one of the leading endo's as far as cushings and pitituary disorders go. You also talk about crohns disease being in your family as well as MS. You could be having more the one process going on as well. Hypothryroidism can cause alot of things and this combined with the stomach issues, can lead to alot of problems. I would look into cushings first since you have so many symptoms. Please visit www.cushings-help.com for more info, and join the message boards. They have alot of helpful people there. You can post the test results you already have, and they will tell you what it means and how you should go on from here. The best of luck to you! Kiera
    Anonymous 42789 Replies
    • November 21, 2007
    • 08:28 AM
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  • Even though I think you have some obscure medical problem, why don't you try Adkin's again? Since it worked, why did you give it up? I know it's hard at first, but if I gain a little weight, I go on the diet and I notice that I start to feel pretty good. How did you feel during the diet? Look up "unexplained weight gain".
    rad-skw 1605 Replies
    • November 22, 2007
    • 01:00 PM
    • 0
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  • There's a doctor in Santa Barbara who specializes with the hormone stuff. I think you should consult with him. He would address the low male hormones. He would run some tests and then make some recommendations. He is apparently beyond the times, so post your email address if you want his name.
    Monsterlove 2921 Replies
    • November 22, 2007
    • 08:21 PM
    • 0
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  • Since vitiligo is an auto-immune disease, I would guess you have some kind of thyroiditis. Maybe a rheumatologist or a new endocrinologist?
    rad-skw 1605 Replies
    • November 23, 2007
    • 00:51 PM
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