Discussions By Condition: I cannot get a diagnosis.

Symptom checker says it is endocrine/tests all are normal, help!

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: halal37
  • May 20, 2009
  • 11:20 AM

I am at a loss as to what to do. I just saw my endocrinologist yesterday who told me once again all my lab tests are normal. Since March I have had three 24 hour urine tests, umpteen blood tests, peed in who knows how many cups, and even had a water deprivation test in the hospital. A brain and pituitary MRI, both normal. Nothing is showing up. Everything is normal. But when I go to the symptom checker every symptom I put in screams I have an endocrine problem. I just do not understand how every test can come back normal. I have also been to 3 neurologists in the past year (kept getting referred to them), a GI doctor, PCP, OBGYN, and a neurotologist. A few of my symptoms: since 2006 been drinking 2 to 3 gallons of water per day, sleeping problems which have gotten much worse in the last 6 months, muscles twitch, daily headaches, skin so dry it hurts, red bumps on arms and legs, since Feb. my hair has been shedding at an alarming rate, just developed high blood pressure, salt clearly makes my symptoms worse, menstrual irregularities, etc. Since last fall I have been getting much worse at an alarming rate. The neurologists are in agreement my muscle twitches (or contractions) are not neurological. No one is able to do anything for the headaches-antidepressants do nothing, migraine meds worthless, last neurologist agreed I am not having migraines. OBGYN found no cause for my problems. Hormone levels great, no signs of perimenopause. PCP is at a loss. GI doctor found nothing after much blood tests and scoping both ends. Neurotologist found no ear problems to explain sudden balance problems last summer (which seem to have gone away) and said it was a brain issue. Every symptom I put in the symptom checker says my problem is probably an endocrine issue, so where do I go since the endocrinologist is finding nothing?

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6 Replies:

  • Ask about celiac disease. Try this National Insitute of Health site here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1263 Replies Flag this Response
  • I have been checked out several times by several GI doctors, first time in the early 90's and the 2nd time last Dec. I do not have celiac disease. I have also gone more then a year not eating gluten with no changes. I am 100% possitive that is not my problem.
    halal37 96 Replies Flag this Response
  • The symptom checker was right!!!!! I got the labs from the endocrinologist and they were not all normal. The labs revealed my blood levels of epinephrine and testosterone are both so low the lab could not measure them. My endocrinologist totally ignored this, even though I a lot of symptoms that suggest an adrenal problem. Well, After making this post I saw a doctor being interviewed on the local news. I tracked him down-OBGYN specializing in natural hormones and hormonal issues. He did a saliva test on me and I have adrenal fatigue. My adrenal glands are exhausted and not producing much hormones at all, which explains most of my symptoms. The rest can be explained by the fact a simple blood test for Vitamin D3 (the form our body actually uses) revealed I have a severe Vitamin D deficiency. So if you are being told by an endocrinologist (or any doctor) all your labs are normal, get copies and check for yourself. The doctor may be ignoring the facts.
    halal37 96 Replies Flag this Response
  • I understand your search for answers, but I am sorry to say that this is likely not the correct one. You may be disinclined to believe me, but there is no medically recognized condition called "adrenal fatigue." I will direct your attention to a brief article from which I have also taken an excerpt below:"It's frustrating to have persistent symptoms your doctor can't readily explain. But accepting a medically unrecognized diagnosis from an unqualified practitioner could be worse. Unproven remedies for so-called "adrenal fatigue" may leave you feeling sicker, while the real cause — such as depression or fibromyalgia — continues to take its toll."(Quoted from:http://www.mayoclinic.com/health/adrenal-fatigue/AN01583accessed 7/4/2009) Unfortunately, while the article referenced above states that this "diagnosis" is used by "unqualified medical practitioner(s)", on conducting a simple internet search I found quite a number of MDs indulging in this charlatanism in search of lucre. My intention here is not to try to convince you of anything, but merely prevent you from being duped. Please ask your other physician (the endocrinologist, for instance, or your primary care physician) about this condition before investing in a medically unrecognized treatment.
    m3dh31p 69 Replies Flag this Response
  • I just read the web page m3dh31p told me to look at and I am shocked at how closed minded a doctor could be. What he is basically telling me (and everyone else who feels horrible) is that the past 7 years of suffering and my symptoms mean absolutely nothing. He wants me to keep suffering until some doctor he thinks is qualified (and how does he determine that?) decides to pay attention to the lab reports. The crazy thing about it is my lab reports, from blood ordered by my endocrinologist do say I am deficient in several hormones that the adrenals produce. I am so low the lab could not measure them (epinephrine and testosterone). The endocrinologist totally ignored what the labs revealed but an OBGYN did not. So the OBGYN is now being labeled as incompetent? BTW, the OBGYN ordered more tests that revealed beyond any doubt my adrenals are not working like they should. I have to wonder about the credentials of that doctor on the web page. He should know that when a person has symptoms of an endocrine problem such as diabetes and the labs are not definitive as being way below the normal, the patient is still treated. I know a lot of folks who have been told they are pre-diabetic and put on a special diet. The same is true for other endocrine disorders. But for some reason this doctor thinks the patient should be almost dead before an adrenal disorder can be diagnosed, let alone treated. I also have to wonder if he has even studied the subject at all. He seems to think treatment could be dangerous. My OBGYN has given me all natural supplements designed to help my adrenal glands repair themselves. The endocrinologist only gave me high blood pressure medicine (which suddenly developed in April). Prescription drugs have a ton of side effects, but the vitamins and other natural things I was given (and I did some research) have none. m3dh31p, I did find it humorous when you told me I might actually have fibromyalgia. It wasn’t all that long ago when fibromyalgia was considered a quack illness. No “competent” doctor would even suggest a patient has that disease. Even today, there are many doctors still practicing medicine who will tell a patient that disease does not exist and their problems are mental. And for everyone’s information. I am not depressed, not even the slightest depressed. I also do not have widespread pain or the other symptoms that would suggest fibromyalgia. I do have a ton of symptoms that suggest an adrenal problem. In fact, no matter what symptoms I put into the symptom checker, endocrine problems always popped up and most of the time I would get a ton of adrenal conditions.
    halal37 96 Replies Flag this Response
  • I know this is an old thread but I am having exactly the same problem - except in the excess. High DHEA levels, my symptoms mirror cushings syndrome but my scans are all clear. I have seen the same Endo twice, the second and soul destroying time this week. Arrogant stupid man! back to the drawing board - I will not give up, I know MY OWN body! ;)
    Anonymous 1 Replies Flag this Response
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