What in the world is going on with me?

[Kelle84]

Hi everyone,

I am a 27 year old female, and I have been having health problems since I was 8 years old.  It began with issues of fatigue and a constant thirst, as well as shortness of breath and intense leg and foot pain (my mother called these 'growing pains,' but I've since found them to be peripheral neuropathy), and the dizzyness/fainting spells (which have since been found to be orthostatic hypotension/neurally-mediated syncope).  I came from a family where health problems 'didn't exist' and were 'in my head,' so I was not taken to the doctor until the age of 14 when my hair began falling out in clumps and I developed dark circles around my eyes.  The doctor was sure I must have a thyroid problem, but everything came back negative.  I was told it was 'just hormones' due to puberty, and that it would go away.  Nothing was ever diagnosed until age 19 when I contracted the worst case of mono my doctors had ever seen, as well as the longest lasting case (1 full year... I could not shake it no matter what I did).  Shortly after, I developed hypothyroidism, was diagnosed with hypoglycemia (I think I had always had this problem, though), anemia and B12 deficiencies, and a positive ANA.  I ended up being taken off the Synthroid I was on, and my thyroid levels seemed fine, so they assumed that Mono caused a temporary case, even though I still had all the symptoms.  My symptoms became debilitating at this point.  It wasn't until a few years ago that I saw a Hormone and Wellness doctor (after the endocrinologist I was seeing told me there was nothing he could do and I should just exercise more), and she did a saliva test and found that my 8am cortisol level was low (2.4), my DHEA was high, and my progesterone was low.  I then became tired of all the doctors I had been seeing (probably 20 at this point), so I decided to make an appointment for the Mayo Clinic.  The endocrinologist there passed off my test results, saying that he didn't believe saliva tests were accurate and were a 'bunch of hooblahjooblah that these natural doctors like to do.'  However, I had a laparoscopy done and found that I have endometriosis (explained a lot of period symptoms), and then the neurology department found that I have orthostatic hypotension and peripheral neuropathy in my feet.  They also told me that I was dehydrated and that this would cause the problem.  I was drinking at least 8 glasses of water a day, so he told me to switch to Gatorade because it had more sodium.  I tried this, and it didn't seem to really help much (maybe a tiny bit).  And then I would look at all the other 23 year olds around me and notice that none of them ever drank much fluid, and here I am downing a gallon of water and Gatorade, and I STILL felt dehydrated.  At this point, I lost my medical insurance, and took the advice of a doctor who told me to just continue drinking a lot, sleeping, and exercising.  I finished college last year (finally... it was hard to make it through with this awful fatigue), and began a job with insurance.  I went to my primary doctor who found that I had mitral valve regurgitation and a kink in my right carotid artery and would eventually need surgery.  She believed that the kink was unrelated to the rest of the problems, but that the mitral valve and the new cortisol test (in the 2's again at 8am) may mean something.  However, I lost my job before I could do any further investigating.  Shortly after this, I had the first 'attack.'  I was sitting at work, and was overcome with a wave of nausea.  I had to haul it to the restroom where I spent about an hour between throwing up and the other fun stomach stuff.  I also began to urinate what felt like all of the fluid I had in my body (I hadn't even begun drinking my daily fluid intake).  It got so bad that I had to make an emergency leave in an effort to take myself to the hospital, but didn't make it out of the parking lot before putting my head down on the steering wheel and... I guess I fainted because I don't remember anything but putting my head down, and suddenly it was 5 hours later.  I spent the next two days doubled over, unable to move in bed, feeling like every part of my body was on fire, sweating with a fever... I couldn't stand up at all because my blood pressure was too low.  I couldn't get any food down because, so my blood sugar was low.  I had intense chills even though I was burning up with a fever, and I lost several pounds over the course of the 3 days.  Well, come to find out, I was pregnant, and then I miss carried the following week.  I assumed that this attack of illness was associated with that, but I had another one a few weeks later.  And another a couple weeks after that.  In September, I had one so bad that my mother took me to the hospital where they found that my blood sugar level was really low and that my white blood cell count was down.  I had 2 more attacks in the following weeks that landed me in the hospital, and each time they were at a loss and told me to see my regular doctor.

- scroll down to read the rest.  I was cut off with a character limit -

[rumpled]

I have the same advice for you - find a neuro-endo at a pituitary center. Get copies of all tests, and find a competent neuro-endo.

[janetssheldon]

Hi Kelle,
Have you found any answers to your health issues?  My husband is having the exact same issues and no doctor knows what is wrong.  I hope you have found your answers.  Any advice for my husband would be appreciated.  
Thanks, Janet

[rumpled]

Cortisol is a strange hormone. Weight gain is actually one symptom and not everyone has it. I happen to have had Cushing's and I did not gain weight with mine for at least 6 out of the 12+ years I know I had it (tumor was identified). However, I had thyroid, heart, hormonal, fatigue, skin, healing and a lot of other weird issues that could not be resolved. I too went to Mayo. They could not help me either...

An ER is not helpful for hormonal issues since the testing has to be done at the proper time. Saliva is good testing despite what you have been told as long as the lab is reputable. It also sounds like you have DI - diabetes insipidus - with the drinking and peeing issues - so it really sounds like your pituitary is involved. You need a neuro-endo. You may be able to get into a clinical trial without insurance.

[Red_Star]

Pregnenolone is the first steroid hormone produced from cholesterol, which is then made into any of the other steroid hormones such as DHEA, progesterone, the estrogens (three types: estrone, estradiol, estriol), testosterone, the corticosteroids, and aldosterone.  Without enough pregnenolone there will be insufficient amounts of certain hormones being made and possibly relative excesses of others.  Aging, stress, disease, hypothyroidism, exposure to toxins and depression all result in low pregnenolone levels.  

Do you have your thyroid lab results? Adrenal insufficiency and vitamin B12 deficiency are common with hypothyroidism.  Vitamin B12 deficiency is also noted to cause adrenal stress and cortisol depletion or high cortisol levels. Both vitamin B12 deficiency and thyroid disease are listed causes of peripheral neuropathy.

[Kelle84]

I don't have insurance and have too many pre-existing conditions to get a policy that isn't group insurance, but I became so debilitated that I could no longer work.  I finally made it to another Hormone and Wellness doctor where they said my progestone/estrogen/testosterone levels showed that I must have Polycystic Ovarian Syndrome (they said probably caused in part by my low blood sugar) which probably caused the miscarriage, my Pregnenalone level was virtually nonexistent (still don't really know what that means, and can't find much information on it besides natural health food supplement sites), and my Cortisol level was 1.9 at 8am, and at 4pm was raised to 16 which said it was High on the chart.  I don't have the exact test results in front of me, but it went from 1.9 to 16, and the doctor said it should have been going the opposite direction over the course of the day - higher to lower.  She gave me Cortef to take in the morning to raise it, and then a natural supplement to lower it in the evening, and Progesterone for the PCOS.  Now I am job-hunting, trying to find a job with benefits (or at least need a job where I can pay for the federal high-risk pool insurance myself, since I am uninsurable because of my pre-existing conditions), but it will be a few weeks before I can obtain it.  And, I ran out of the Cortef.  Now, my question is:  What could make my Cortisol level start so low in the morning and go so high at night?  I stalked these forums a bit and it seems that it's generally suggested that one might have Cushing's, but I don't have ANY of the symptoms of that, and my Cortisol level starts so low in the morning which would indicate adrenal insufficiency.  That test came a few weeks after my miscarriage, and I read that pregnancy raises your cortisol level.  And I also took a short nap before the evening test (they took so much blood from me that day, it made me so tired).  I don't know if that could affect it.  But even the previous saliva test I had done a few years before showed a lower Cortisol level at night.  I have so many problems here, and I feel that it HAS to be related to my Adrenals... my ACTH was fine in the last test I took, so I don't know if that rules out pituitary problems.  I did, however, have a cortisol stimulation test back at the Mayo (that I had to beg for him to do), and it showed my cortisol level starting out at 2.1 and jumping to 19 after the injection... he said this meant nothing, but some of my research has told me that when the number more than doubles, it might mean a pituitary problem, and mine went up NINE times.  I'm at such a loss, because I have these symptoms and these test results, but nothing matches perfectly.  I don't have darkening of the pigmentation of my skin, but I have pretty much every other symptom of Adrenal Insufficiency (and the subsequent problems it would cause, including hypotention and INTENSE sodium cravings, as well as the dehydration that no amount of water intake seems to fix).  But then I get this one random High cortisol reading, but I have no Cushing's symptoms.  I've never had my Aldosterone level checked, but I'm thinking that might be the culprit of the dehydration.  Then I get a temporary thyroid problem (which now tests 'borderline low,' they said), and I have hypoglycemia, PCOS, Endometriosis, Anemia/B12 deficiencies, Neuropathy, and the Hypotension, plus the mitral valve regurgitation that one doctor told me meant something and the other said meant nothing.  I'm so tired of being tossed around to different doctors, and no one being able to piece this together.  If anyone has any clues or tips as far as what I might be able to tell my doctor or any tests I should ask for, please let me know.  It's been 19 years, and I'm tired of feeling like this, and these weird 'attacks' I keep having are scaring the heck out of me.  The Hormone doctor said it might be adrenal crisis because of the symptoms and the fact that I run low on Cortisol, and after reading the symptoms, I pretty much have every one of them on the list, including complete loss of consciousness (but I've only been able to go to the E.R. for these attacks, and they never ever test for Cortisol).  Please, any tips, or even a similar story would be so greatly appreciated!  And thank you for reading this novel I just wrote.  :-)