Monday, June 29, 2009

Angela (AngelaK), pituitary bio

I've fought weight since I got out of high school but was pretty healthy otherwise. BP was normal and I had no problems keeping up with my friends even when I hit 350 lbs.

After years of failing at diets, and months of research, I decided to have gastric bypass surgery. I had the GBP in Dec 2006, lost 125 pounds in the first 8 months and then plateaued and 225. I admit, I had gotten lazy and wasn't really trying to lose or following the GBP "rules".

A little over a year later (Mar 2008), I developed insomnia. I just woke up between 4 and 4:30 am and I was going to bed around 12:30-1am. If I went to bed earlier, I just woke up earlier. Over the past year, 4 hours of sleep is about the norm. Next came crazy sugar cravings. Those are bad because too much sugar makes me horribly ill (GBP). I developed hand tremors and was sent to neurology who evaluated me for Parkinsons or something similar. They ruled out anything like that and said it was an "essential tremor" that some people get so I just deal with that. My edema was horrible some days. My ankles would be 3 inches larger around than normal. My hair started falling out. This was the second round. The first was about 5 months post surgery when I lost about 1/4 of my hair (common after GBP surgery). I just attributed this second round to some recent nutritional issue related to the surgery. I started bruising easier, my periods (which had been infrequent) went away totally, and my memory, concentration, and coordination went into the toilet.

My symptoms popped up one at a time so my PCP treated them individually. At this point, I was taking metformin for hyperinsulinemia (3 years+), lasix, prilosec (from the GBP), and wellbutrin. I had asked for something to help with the agitation I felt constantly, which was manifesting itself in road rage and it essentially blunts all emotions for me. He attributed most of the symptoms to the insomnia (memory, concentration, coordination, tremors), which wasn't unrealistic because they were worse on days where I only got 2.5-3.5 hours of sleep. He couldn't find a medical reason (at the time) for the insomnia, so he sent me to a shrink. All he asked was if I was under a lot of stress and if I had thoughts of killing myself. He had such a horrible "bedside manor" that I wanted to after 10 minutes with him.

In November, my thyroid tested low and I was put on Armour thyroid hormone. It didn't do anything for me. I suddenly lost almost all strength in my left thigh. If I was carrying anything at all, I had to take stairs by going up with my right leg and bringing my left up to meet it. It would give out if I put weight on it while bending at the knee. This was hard to deal with because I had been able to carry at least 50 pounds up the stairs when I was at my heaviest. My weight was still steady at 225, even over the holidays when I ate too much junk. I started having double vision and had an MRI to look for a brain tumor. It was clean. I started having high bp readings. Typical was 130/85 but it was 160/110 one day at the doctors. My T3, T4, and TSH were all low. The PCP said that they all should be normal (from the Armour thyroid med), but if T3 and T4 were low, then the TSH should have been high, which it wasn't. I had started eating healthy and following my GBP rules. My caloric intake was about 800-900 calories per day, max. After a couple of months, I started gaining weight. From Mar to mid May, I had gained 45 pounds. I went to my varicose vein doctor and my edema was so bad she wouldn't do the treatment. She made me promise to see a doctor immediately. Mine was booked but I got in to see his wife and I had gained 15 pounds in the past 2 weeks! I can't eat enough food to explain that and it alarmed her. I had been keeping a record of my symptoms and I showed it to her so she would have some context for evaluating the edema instead of just giving me a pill. She saw I wasn't menstruating and saw that my hormones were normal indicating I wasn't menopausal (I'm not quite yet 40 yrs old). She immediately said that needed to be addressed. Maybe it was a red flag to her being female but my PCP had never brought it up with me. She read over the list and said that I probably had a pituitary problem.

She scheduled for another MRI and an appointment with an endo following that. The endo said the MRI showed a small tumor. She had tested me 3 years earlier for hypocortisolism and it had been negative but she had me do another. I saw a neurosurgeon who got my results and said the cortisol level was "quite high". He ordered a second 24 hour urine test for verification and a dexamethasone suppression test. The dexamethasone test showed that the morning level was very high which indicates (I believe) that the cortisol overproduction is caused by a tumor and not the adrenals. The other results should be in today (June 29) and he will decide to operate based on that.

I guess I'm lucky if you want to call it that. If the cortisol test 3 years ago was really normal, I've had Cushing's for between about 2-3 years. I've had some problems longer than that, but I've read a lot of posts where people had symptoms but tested negative. In any case, I haven't had to fight anyone about this. Sure my PCP was slow and ultimately wasn't the one who diagnosed it, but he was trying. He said he had never had a patient with Cushing's so it had never even crossed his mind. I think that if he had seen everything at once with fresh eyes, he might at least thought pituitary since it controls so many things.

I am so eager to get this taken care of. I am sure this all sounds familiar. I constantly feel on edge, I can't relax, my double vision (which may be unrelated) is very bad. It causes vertigo and horrible headaches. I don't know how common the bone weakening is but I am already at risk because of poor calcium absorption from the GBP. I am afraid that between being clutzy, the double vision and the leg weakness, I'll fall and break something. My bp is borderline high. My blood sugar has dropped below 20 a few times and I thought I was going to pass out. I read that cushings can cause susceptibility to fungal infections, "unusual" infections, and "opportunistic" infections, such as pneumonia. My boss had pneumonia so I avoided him as much as I could. A small dark patch on my shoulder had been diagnosed as a fungus related to ringworm before I had heard of cushings. Then last week, I developed painful knots in my arm and it all turned red. It was cellulitis. The doctor said if the antibiotics didn't make it better by the next day that I needed to go to the ER and get on IV antibiotics. Luckily, it got better. I had an EMG, which showed some nerve damage in my left leg but not enough to cause the weakness. That doctor said Cushing's could cause it but it was unusual for it to occur only on one side. We'll see if it goes away after surgery.

I've been pushing through all of this as best as I can and have been carrying on like normal, albeit slower, weaker, in constant pain, and with poor memory. It hasn't gotten debilitating like with some people so I consider myself lucky. It seems like a lot of the symptoms are just seen by people as "annoyances" or worse, in my head. At least the edema and bp of 160/110 were serious enough to get attention. I have a great job in a research lab with extreme flexibility but I was still concerned that my coworkers and boss might think that I've been a whiny baby and was just making stuff up. You can't prove you have double vision or how fatigued and horrible you feel. Then again, I had a friend/coworker say that I must be feeling better one day because "the dark circles under my eyes weren't quite as dark as usual". HaHa!! Now I feel vindicated because you can't fake brain surgery :-) After reading so many stories, I am thankful that I got doctors that are very open to considering all possible causes of the symptoms. Even though it took a while, at least I wasn't getting the runaround and my PCP was addressing things to the best of his ability. My neurosurgeon is at the University of Michigan and only does pituitary operations (2000+). The endo he is consulting with (not the original), has a special interest in Cushing's. I guess I am also lucky to be in good hands. The neurosurgeon has been emailing me to keep me up to date on test results. I just hope everything goes as planned and I get this removed in the next couple of weeks.

Update July 2, 2010
The last time I wrote my bio, I was waiting to have surgery. They removed a pituitary microadenoma on July 8, 2010 and it is nearly one year later. My surgeon weaned me off of my replacement hydrocortisone rather quickly and I was totally off of it 8 months after the surgery. I did have withdrawal symptoms, such as extreme fatigue, aches, pains, nausea, etc. While I had Cushing's, my white blood count was elevated and I never got sick. However, now my WBC is half what it was and it seems everything makes me sick. In addition to withdrawal symptoms, I've had at least 4 sinus infections, 2 throat infections, a bladder infection, a methicillin resistant staph infection (mrsa) in my leg (cellulitis) that put me in the hospital on IV antibiotics for 4 days, and now have something like pneumonia or pleurisy because it is excrutiatingly painful to take in a deep breath. I also must have been really hard on my body while I had Cushing's because now that the excess cortisol is out of my system, I find that I have tendonitis in both hips and shoulders, plus torn ligaments and muscles in my shoulder. They say it seems it's been dislocated but I have no memory of an injury. The surgeon says that the excess cortisol could essentially mask things like that as corticosteroid treatment is used on those types of injuries.

On a positive note, my blood pressure is back down to 90/60 (from 160/110), my insulin and thyroid are back to normal, I can sleep (when my hip and shoulder pain lets me) more than 4 hours, my skin is thicker and more elastic, but I am still having a lot of muscle weakness. I know that even though I don't feel so hot, I am still much healthier than I was. One person at worked said that she had thought that I looked so bad while I had Cushing's that she thought I was going to die if I didn't get treated. I always worried that no one realized how bad it was because it was such an obscure disease. I am so thankful that I had a doctor that was open to all possiblities and didn't discount Cushing's because it was "too rare" like a lot of doctors seem to do.

Email Angela

Labels: , , ,