Need help with diagnosis after multiple specialists

[missamericanpie]

Please bear with me as I explain my healthcare journey of the past 2 years. Any suggestions, thoughts, or assitance would be appreciated.

I'm a 27 year old female. Active lifestyle but always been a tad overweight.

Before you read this, please know:
1. I know what stress and panic feels like. I have a stressful job and I am honest with myself about whether or not my symptoms are triggered by stress. They are not.
2. I have seen a gynecologist, endocrinologist, gastroenterologist, theumatologist, cardiologist, and 2nd opinion endocrinologist, all of whom have ruled out conditions in their field.

My "attacks" started in May 2012. I was driving and suddenly started getting the following symptoms:
- lightheaded, sudden severe nausea, vertigo, confusion, weird "out of body" feeling
- severe stomach pain/cramps due to bloating and gas, feel like I need to go to either vomit or go to the bathroom but I'm constipated/stool is hard to push out.
- start profusely sweating and chest starts to hurt.
- peak of attack is a 9 on the pain scale and lasts about 2-5 minutes.

In addition to the attacks, I also have the following constant symptoms:
- sporadic, unprovoked nausea (usually at night, when either sitting or lying down for the night)
- sporadic vertigo and feeling like room is spinning.
- Weight loss and gain (in May 2012, I was 235. In December 2013, I was 200. Now I'm back up to 215 in less than  5 months!)
- NO libido
- What appears to be vitiligo on arm pits, genitals, breasts, and face...but the spots disappear, reappear, and change shapes.
- anxiety, irritability and emotional for no reason.
- forgetfulness (this is one of the first things I noticed back in 2011)
- fatigue

These are weird symptoms I believe to be related since they started at the same time...
- I took the color out of 2 sets of sheets. I know it's not because they were cheap sheets because they weren't cheap! And my boyfriend's side of the bed it completely fit, and on my side, the sheets and pillowcase are very discolored.
- Breasts smell bad, even after washing with soap and water. (No discharge that I can tell.)
- Zero alcohol tolerance, not for lack of trying. Alcohol makes me immediately tired and nauseas.
- Feel like objects are drifting towards me, especially when driving.
- my eyes get fuzzy after eating (about 75% of the time and it switches eyes)

Current medications:
- Vyvanse (ADHD medication for concentration and forgetfulness, started about 6 months ago)
- Cryselle Birth control (been on some form of BC for about 9 years)
- Sertraline (for anxiety)
- Zyrtec (for allergies, recommended by gastroenterologist)
- B12 for energy in the morning

After many many many tests, here are the pertinent details:
1. I have a 2 mm pituitary adenoma (shown on a head MRI)
2. Nothing shown on adrenal gland/abdominal CT.
3. Morning blood test showed high level of cortisol. Primary doctor performed high dose dexamethasone 8mg test, showed extremely low levels, which she tells me proves Cushing's Disease. I see an endocrinologist, she says cortisol and all other thyroid levels are normal. 11pm salivary collection test also normal.

It is now coming up on 2 years that I have been experiencing these issues. Last summer, from May through September, I felt great. I was running, hiking, spending time outdoors, and I was losing weight and was VERY HAPPY. In December, the symptoms picked up again in full swing. It is now summer again and I'm trying to get back into running, and my symptoms seemed to have subsided although this morning I am feeling nauseaus and not myself.

I JUST DON'T UNDERSTAND. I can't go through this much longer. I'm a normal, otherwise healthy 27 year old girl. I have a great job, friends, family, boyfriend, and I don't have the time, money or room in my life for this nonsense. PLEASE. HELP.

[pol0sho]

I had same feelings as you, im no expert but ive been doing mutiple blood tests and all returned fine, untill not long ago i started having sleep apnea for no reason (waking up in middle of night without breath and feeling anxious and my nail beds were not 100% pink, kind of white to it , check that, my whole life ive been energetic and active, untill 3 years ago i started getting symptoms and they got worse over time(no energy, nausea, vertigo, lightheaded, forgetfullness) then came the panick attacks for no reason, i had normal stress levels and wasnt depressed or anxious, i remember going to the gym or out in public or even at home at random times having huge panick attacks feelings out of breath, with chest pain and like i was gonna faint , ambulance came 3 times to my house because i was scared... all those symtoms and now nowing what the heck it was where driving me crazy like i was going to die slowly over time, now finally after 3 years of searching my problem, 2 weeks ago i went to a private blood laboratorium and told them to test my sodium levels, iron, testosterone, dopamine, seratonin, check for hypotyroidism and some other i cant remember, as i decided to become my own doctor because i knew something was terribly wrong. Turns out the full complete tests of iron including ferritin and some others all showed way too low... so i finally found what was wrong all these years LOW IRON - anemia, i started taking iron pills 1 week ago, already feeling way better than all these years. Im not saying you would have anemia due to low iron, but its common in women cause you lose alot of blood, because of the symptoms you said, i would say make full tests of iron, dopamine, seratonin, testosterone, sodium, full protein in body, test for hypotyroidism, glutten intolerance. because those could all be it (conventional blood tests dont show many of these in good detail to be detected + its not so expensive to check those,

Best of luck

[mkh9]

Firstly, do they think the pituitary tumor is causing any of this? If you are on dexamethasone it would explain some of the aggressive or obsessive behavior. The main symptoms of vertigo, nausea (especially at night), out of body, stomach pain, confusion, etc. could be due to a seizure and/or migraine. Since you do have a tumor it may be causing some problems that weren't there before. They can touch on a nerve or some area that triggers them. Personally, Until I was treated, I used to get migraines at night that gave me stomach pain, nausea, vomiting, feeling cold, gas, feeling like I had to go to the bathroom badly and diarrhea or having to go badly, the shakes and or feeling cold. They gave me Klonopin and it has worked for years on it. But once you go on Klonopin you can't get off. Or it is extremely, hard to get off. It takes a long time. I am just saying what they did for me back then. There are other drugs now for migraine and seizures. But the I recently started getting severe vertigo where I fall and double vision, flying lights, and now I'm on an anti seizure/anti migriane med Topmax. So, what they did for me to start with was did an electroencephalogram or EEG to see if it was a seizure or migraine. It was a migraine. Then they treated me based on that and symptoms. If you don't see a neurologist you may want to go to a good neurologist. One that specializes in migraine and/or seizures. But don't get discouraged. The other symptoms may be medication related or the dexamethasone is really a strong drug and can cause many symptoms. I'm not sure if it causes the lack of libido as I would have to look that up but it may. I am sure it can probably cause the emotional stuff and anxiety, irritability etc. My brother in law was on it for a brain tumor. It is tough stuff. I hope this helps. Let me know what happens and what you think.