Discussions By Condition: Medical Stories

Need A Diagnosis/endo Related Ppl Only Please

Posted In: Medical Stories 4 Replies
  • Posted By: katevet
  • July 7, 2008
  • 02:16 AM

I am 50 , female. History: hyperthyroid late teens, early twenties, treated with tapazole, kept it under control, developed skin rash, was taken off it. Had two children. After 2nd child was hyper thyroid, few yrs later thyroid burned out, went on synthroid. Around the same time started having episodes: Night sweats, wake up shaking, vivid, crazy dreams, anxiety, tremors. Thought it was too much synthroid. Thyroid was ok. Episodes continue, periods of vomiting and diarrhea, thirst. I work in the veterinary field. Had an episode at work one morning. Dr drew a blood sugar, it was 47. Saw an MD, she said eat high protein low carb. I did, it helped, still had episodes. Periods of V and D and shakes. Saw an endo. Said cortisol was normal, dismissed me, said some ppl have low blood sugars. Lived with it for yrs. Saw few endos, no avail. Got a new Endo, he said iam losing sodium via urine. Sodium was 120 and higher. Blood sodium low normal. Low thyroid again. Put on synthroid and cytomel. Went hyper thyroid, stopped cytomel. Now just synthroid. Had a cortisol stimulation done. Normal results. ACTH has been too high and too low. Nighttime LBS continues. Wore a monitor for blood sugar for 3 days, Showed LBS as low as 40s while iam sleeping. I no longer wake up as i have LBS unawareness. Ins Co wont pay for LBS Guardian to wear at night, said wont change anything. I have taken steroids, Dexo, made me cushings, pred, didnt change things, put weight on. Even on lose dose. Now on Cortef 5mg am and 5 mg pm. Still have LBS episodes. Also take florinef one per day to control sodium loss. It helps, but recent urine, still shows some sodium loss. I have low blood pressure most of the time. Oddly enough now i have brusies all over my legs but cortisol is low normal now. Still normal short term cortisol test. Not addisons??? have to have abnormal stim test. However, Endo said if you get hurt or fall or anything i bet you will have a "reaction" I didnt think so. Fell at work on wet floor last year, felt confused but figured it was because i hit my head. About 25 or so mins later, thought i was ok, still confused and felt funny. Had sudden "reaction" fast heartbeat, felt weird. Took a cortef , didnt know what else to do, didnt test blood sugar or BP, didnt have a machine with me. I felt alot better after taking cortef, may 20 mins later.
Summary, Thyroid issues, low blood pressure, did the getting up and down thing, it drops when standing. If i dont sleep enough, feel weak and so tired the next day, Blood sugar is low and BP. When iam stressed i shake and feel funny. I have salt wasting via the urine. I have periods most days of LBS. What do i Have if not addisons????? ENdo said maybe i have cortisol resistance. Ins CO does not buy that diagnosis. Endo checked for insulinoma via a ct scan. Adrenals looked ok on ct scan. Have never had my thyroid or my pituatary scanned. I have always had pretty normal periods, grew normal except for a pretty significant curve in my spine. Had bad "episodes" of sleep walking as a child. Got "bad colds". took long to recover according to my mother. I dont have aldosterone deficiency. What else to do?????? Tired of fighting this every day, feels like i walk such a fine line if i dont eat right, sleep right, very little room for error as i bottom out so quickly. I also dont understand this weight gain. About 15 lbs. No recent episodes of v and d. Sorry for long post . Any Dr's out there with idea for further testing or help to solve this mystery.


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  • I am not a doctor - but a survivor of Cushing's with several adrenal blowouts. So I am familiar with some of the issues your are dealing with. I struggled for a long time until I asked my doctor to run a 24hr urine of adrenal hormones, one of them Compound S. I knew for a long time that I was having adrenal issues, and never really relied on pharmaceuticals etc. but have been able to keep myself afloat using nutritionals and common sense. There seems to be quite of bit of misunderstanding in the medical field concerning adrenal disorders, as you know they typically classify under 2 disorders, Cushings and Addison's. However in the nutritional fields, they have recognized "adrenal insufficiency" as a valid disorder. Although it is quite difficult to diagnose among the traditional doctors, nutritional minded docs rely upon more symptomatic signs. And of course the matter of treatment differs greatly as traditional medicine really offers no real solution to this problem. Your comments " low blood pressure, did the getting up and down thing, it drops when standing. If i dont sleep enough, feel weak and so tired the next day, Blood sugar is low and BP. When iam stressed i shake and feel funny. I have salt wasting via the urine." feels like i walk such a fine line if i dont eat right, sleep right, very little room for error" really sound like adrenal insufficiency or adrenal inadequacy. Nutritional minded doctors will use several things to strenghten the adrenals. Adelle Davis' book I beleive "Lets Get Well" in which she outlines the adrenal response in the chapter on stress, would be worth a read. This chapter saved my life. The use of copious minerals and vitamins helped restore my adrenal glands. I would also take a look at a test from Traceelements.com. We cannot overlook the value of proper nutrition if we expect a system that is dependent on it to function correctly.
    LINENUP 122 Replies Flag this Response
  • Thanks for the input, i will check out your suggestions. It sounds like it cant hurt. No worse than taking the steroids that i think are causing further damage. ThanksKatevet
    katevet 5 Replies Flag this Response
  • Check www.goodhormonehealt.com and www.cushings-help.com for good support! Wishing you the best.... Kiera
    Anonymous 42789 Replies Flag this Response
  • thanks for the info, i will check them out, just wish i had an actual diagnosis that made sense. It would seem that adrenal fatigue or cortisol resistance is not an accepted diagnosis, my insurance company did not like it and suggested more work out. I see my endo next week, i cant imagine what else he would test me for. The only thing i can think of is my pituatary has never been scanned.
    katevet 5 Replies Flag this Response
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