Cushing's Info

My story began in 2004, I gave birth to my second child via c-section. My pregnancy was easy, I was taking labatalol for my high blood pressure which I developed with my first pregnancy, it never went away. Six months after the birth I began to feel lightheaded and dizzy every now and then. It really didn't concern me until one day, in June, I took the kids to a birthday party at a local country club. It was an outside pool party. It was super hot and humid so we stayed in the pool all day when it was time to leave I was packing the kids stuff up and began to feel like I was blacking out. I blamed it on the heat (I have always been heat intolerant) so I rushed to the car and sat down with the air conditioning at full blast!!  This sadly was just the beginning. I began to have episodes like this on and off for months.
I decided to make an appointment with my GP. He ran a ton of blood work and then met with me the next week. He explained that my blood work showed I was insulin resistant, he put me on metformin and ordered me a glucose meter. He said the dizziness was most likely hypoglycemia, so I began the metformin. The dizzy spells became more intense and frequently I would get this horrible feeling that I call a surge. It's  a rush to my head that causes pressure/throbbing, I can't speak or see, it's kinda like you are paralyzed it only lasts a few seconds but it is intense!!  After I have one I am very dizzy and tired the rest of the day. Like I said these were becoming more frequent so I made another appointment to see my GP, he noticed a big weight gain and that my blood pressure was high, he suggested I go on a liquid diet and he took me off the labatalol and put me on Toporal for my blood pressure. I was happy, I really thought this would do the trick. I was wrong. I was loosing weight from the liquid diet ( yay!!) BUT the dizziness and "surge episodes" were happening all the time, even when I was driving. I began to get panicky and very anxious. I stopped driving my car. I thought I must be having hypoglycemia so I began to check my blood sugar like crazy!  I was catching lows ( 40's and 50's) so I thought that's it!! That is the problem!!

I called to meet with my GP again to discuss the hypoglycemia. When we met he told me to go off the liquid diet and her ordered  a CT scan of my pancreas. I met with him two weeks later to get the scan results, he said the pancreas looked great but found a 1.1cm annurism (sp?) on my artery leading to my spleen, he also said I had gallstones but not to be alarmed by them. He then sent me to two vascular surgeons. I met with both, one, I had to wait four hours to see grrr!! They both said they would prefer to scan it every six months that it was too risky to remove. So I listened. In the meantime, I am gaining more weight, my face is getting red and flushed, I am beginning to have night sweats, frequent stomach aches and of course the nasty dizziness!!  I called to see my GP again. He said I was gaining too much weight and referred me to a dietitian ( I went, she was great, put me on a low cal. meal plan that I still follow today!) He also said I was hypoglycemic and to stop the metformin, and that my blood pressure was low and to cut the toporal in half. He said " I have known you for many years and never seen you this upset" ( he was my Doctor for 15 yrs.) I will give you a script for xanax. So I went on my way. My quality of life at this point was going down the drain pretty fast I was no longer driving, I did not enjoy play dates with my friends and their kids, camping, shopping etc. it was not good!  So in the meantime I tried not to get too down in the dumps,  I began to meet with a psychiatrist AND I found facebook  LOL!!  Then one morning I woke up and felt really sick with chest pain, stomach pain, back pain.  I waited for my husband to get home from work, when he did he took me right to the hospital. The doctor ordered blood work, he said my D-dimer and white blood cell count was elevated and suspected I had a blood clot ( I have had two in the past), they ran a full body scan and it came back fine, I was sent on my way.

The next day I felt worse but no chest pain thank god! My husband insisted we go back to the hospital. They ran the blood and did a chest x ray, they said it was bronchitis gave me a script for antibiotics and I went home. During that whole ordeal they had paged my doctor but he never returned the page, I thought it would be best to look for a new Doc. So I decided while looking for a new GP I would schedule an appointment with a well known neurologist about my dizziness. I met with him he ordered a MRI ( came back fine) he said my blood pressure was high and should see a cardiologist. So I did. I met with one of the "top" cardiologist in Michigan they ran a thirty day halter monitor, ekg, stress test ( could  not finish began to feel faint),echo. They came to the conclusion that I had sinus tachycardia ( fast heart beat). They said that could be causing the dizziness and to keep taking the toporal and loose weight. I decided to join Jenny Craig for the forth time!!  I also made an appointment with an endocrinologist about the blood sugar/ weight issue.

My friend suggested a GP so I met with her. She came across as really attentive she took all my info and really listened, I thought this is it, she gets it!! Silly me! she said.. "Regina what is going on? why are you seeing all these doctors? have you ever seen a therapist before?" I broke down and began to cry I told her yes I am seeing a therapist, I said... "this has been an awful time for me", I explained that my psychiatrist had tried two different antidepressants on me and both caused me to have very high blood pressure, I explained further that my psychiatrist told me I needed to get the underlying medical problem solved.  She told me we may need to reconsider an antidepressant. I said I am all for it if it will make me feel better. She said to go to the endocrinologists appointment and follow up with her after, oh, and in the meantime loose some weight.

Three months later I finally met with the endocrinologists. She took all my info, blah, blah, blah then she examined me, she said "oh you have a "buffalo hump"  I asked what she meant and she pointed to the lump on the back on my neck she asked if I had ever been tested for cushings? I said I have never heard of it, so she ordered a 24hr. urine test and some blood work. She called a week or two later and said the test came back fine and she was sending out a script for metformin. My blood sugar was too high. So I gave the metformin another try and of course I was checking my blood sugar & catching low numbers. So I called her nurse she consulted with the Doctor who told me to discontinue the metformin. She decided I should go to a specialist that specializes in insulin resistance and hypoglycemia so I made the appointment ( 6 mo. wait).

So couple days later I got really sick vomiting & stomach pain so I went to urgent care they took my blood and said my WBC count was high & to follow up with my GP. So I did but the GP decided I should meet with her colleague ( her husband) with out my knowledge so he came in the room I was like hmmm where is my doc?? Anyways... he went threw all my history ( ahhhh, I just did this with his wife!) he said he wanted to re -draw the blood to see if the WBC came down. He had no advice about my nasty symptoms. He said you have to loose weight. He called me two days later and said he needed to see me.  I went in and he said my WBC was elevated and he thinks it is the gallbladder because my stomach was distended and hurting.

He sent me to a general surgeon. The surgeon said  he wanted to remove the gallbladder but I should meet with a vascular surgeon about the anyurism first. I researched on line for the best vascular surgeon in MI and made an appointment we met a week later ( a week woohoo!) The vascular surgeon said he would recommend embolizing ( not sure if thats the correct term) the anyrusm because I am young. I agreed and he said go back to the general surgeon and get the gallbladder out first. So I did, the gallbladder had 90 stones, yikes!

The surgery went well but the recovery was awful. I could not stop sweating, throwing up, the dizziness was out of control and then to top it off I developed a rash under my breast and ribs.  I called the GP, of course, they had me come in. I saw the wife this time. She said it was a yeast infection and gave me a script for cream, I thought... that was easy, ahhh not so fast as she walks out to leave the room she says.. " we need to talk about your weight gain but because you just had surgery I will not pick on you today" AHHH I wanted to scream!!  Sooo the gallbladder is out, still feel like sh*t and it's time to meet the second endo. I get to his office I am super dizzy from the two hour drive and just wanted to lay down. The nurse downloaded the glucose meter and the med student came in asked me a bunch of questions and then ironically  she noticed the "buffalo hump" she asked " have you had your cortisal checked before"? I said yes and it came back fine, she went and talked with the doctor. He came in, didn't even sit down and he said " you are checking your blood sugar too much the only thing wrong with you is a panic disorder" Just like that, no lie! I wanted to die not, only am I feeling like hell from the ride there I felt utter embarrassment. I was checking my blood sugar like a crazy lady I couldn't deny that!! but I wanted answers, something to blame all these nasty symptoms on and the blood sugar was it! So that was that.

I went home and felt super depressed  so I made an appointment with my therapist he helped me push threw it. I decided to start researching cushings, I looked like the pictures! I had all the symptoms!! But I pushed it out of my mind, I had the 24 hr. test. It came back fine so I left it alone.

Then summer came time for the aneurysm surgery. The surgery went great of course, the recovery was bad. Thanks to the endo. that diagnosed me with panic disorder  & put it in the medical file at the hospital so every time I complained about pain or my heart racing the nurses would say... oh you must be having a panic attack I will oder you some ativan. I could not wait to get home BUT I could hardly walk on my own with out assistance for one month, it was bad!! I had to have a one month check up with my GP. I saw my GP again and he gave me vaccines ( spleen does not work now so I needed vaccines) I decided I would bring up the dizziness with him and see if he could offer some advice, he offered his advice alright! He said " in my humble opinion you will feel better if you stop eating danish and donuts"  I was in shock I do not eat that stuff!! I did not say a word.

I went home and decided this is it, this is how I am going to feel. I gave up looking for answers. His office called a couple weeks later to schedule a check up, I said no thanks!  So months later my husband and I were watching a tv show called mystery diagnoses, the segment was called  "falling down"  it was about a women that had all the same symptoms that I have ( but w/o the weight gain) her condition was called Orthostatic Intolerance.  I researched the heck out of it it fit my symptoms (except the weight gain, buffalo hump & stretch marks)

I searched on line and found a specialist at the Cleveland Clinic that focuses on dizziness and the funny thing is she treats my sister for fainting. I felt like such a dummy not connecting the two together!

I met with specialist six months later she ran a test called a tilt table the test showed issues with my blood pressure she diagnosed me with Orthostatic Hypotension and POTS( http://www.dinet.org/pots_an_overview.htm) she suggested cardiac rehab ( insurance won't cover, so bought an exercise bike)  increase salt intake, support hose, and a medication called flornif.  I did everything but the med I thought the side effects are too dangerous. I am very blessed to have a diagnoses but I am not feeling any better some days are better then others though.

I see this specialists again in 4 weeks hopefully she will have some ideas to help me. I did find a great GP thanks to my sister. I felt confident enough around her to bring up my suspicions about cushings and how I have the symptoms. She was awesome, she listened and did not make me feel like I was crazy.  She ran blood tests and switched around my topral (my heart rate is much better with the switch) couple weeks later I went in for the blood test results she said my wbc was elevated, testosterone was elevated, I was anemic, vitamin B12 defiant, and high triglycerides. She told me to take iron pills for the anemia and fish oil for the triglycerides, she also gave me a vit. b12 shot. She then called the first endo. I saw  3 yrs ago ( I have been sick for 5 yrs!!) and asked her to meet with me. I saw her the next day. she said she wanted to re do all the blood work, I brought up the cushings stuff, she said she would order a dex suppression test.

Three weeks later I came in for the results... my insulin is high she wants me to go back on the metformin, lol!  I did not suppress on the cortisol test, which she said I should have suppressed. She said she will not diagnose it as cushings just yet. She wants to run more tests, she ordered two 24 hr. urine tests.

So now I wait, wait & pray that all this will soon have closure! I have no clue if I have cushings or not but I dream of the day I can stand and walk without feeling faint, be a normal weight and feel well!!

I want to live this awesome life with my beautiful kids and husband and make memories!!  blessings to you all....