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Addison's Disease Message Board

Addison's Disease Board Index

Hi Everyone,
I am so glad to have found you!!! I am not even sure where to begin. I am 35 year old female. Had precoius puberty as a baby (found out this could be linked to all that is going on, if that makes sense). Infertility, severe endometriosis, microcytic iron deficiency anemia, chronic allergies. Hysterectomy in Jan '04 (left remaining right ovary for hormone support). Within days, developed a post-op ileus & started having problems with nausea & vomiting. After several months of being back & forth to the ER, being hospitalized, etc. GI dr did a head ct. dumbbell shaped pituitary tumor with each dumbbell measuring 5mm. Sent to neurosurgeon. Had 1st trans-sphenoidal in June 2004. Rathke's Cleft cyst. Had an issue of diabetes insipidus, but was resolved after 1 dosage of DDAVP. Put on Cortef. Was able to eat for the first time in months without getting sick. Unable to get all of mass. Continued to watch it every 6 months. Taken off Cortef in April 2005. Within weeks, started having vision problems. Another MRI showed the remaining mass grew 2mm within just a few months & was rapidly growing. 2nd trans-sphenoidal in August 2005. Had major problems with DI. Spent 9 days in the hospital due to trying to get the DI under control. Went home on DDAVP. Also put back on the Cortef. Post-op MRI in October 2005 showed something was still there. Had a craniotomy in December 2005. DI amazingly disappeared a week before that surgery. Within a few weeks of that surgery, became hypothryoid & growh hormone levels dropped. Put on Synthroid. Moved to SC. To make a longer story even shorter, remaining ovary shut down & had to be removed in September 2006. Put on hormone replacement therapy. Also put on Ambien. Oct 1, 2006 MRI showed everything looked good. Growth hormone levels have been consistanly low since craniotomy (between 92-116). Still not on anything for it. At end of October started having severe dizzy spells, low bp, low heart rate, insomnia, severe exhaustion. Ignored it even though I have come close to blacking out several times. It is worse in the afternoon & evenings and/or after being on my feet for periods of time. Went for my yearly physical in January. BP too low. Abnormal EKG. Sent to a cardiologist. After several tests, cardiologist said it was all endocrine related. Endocrinologist said it was cardiology related. Put me on Florinef & increased Synthyroid from 88 to 112. We then moved to VA. Dizzy spells, low bp, low heart rate, etc. continued. Been getting worse. Cardiologist here ran tests along with endocrinologist. Endo also did an MRI to check things. MRI came back recently showing a reoccurring cyst measuring 4.5x3mm. Neuroradiologist said after comparing MRI to one done in wasn't there in October but is there now. Endo checked cortisol at 11am in the middle of March, which showed a cortisol level of 4.6, TSH was low, hyperthyroid, FSH was possibly low ..12 (menapausal), low growth hormone ...116. Repeated an 8am cortisol level 2 weeks ago which was 13 Started having headaches a few weeks back. Been steadily getting worse. Endo said it was cardiology related. Then Tuesday morning, I was driving home from a drs appt when I had one of the worse dizzy spells. Vision became fuzzy, became disoriented. Went into a full blown migraine with nausea & vomiting. Couldn't even keep fluids down. Lied in bed in agony for about 12 hours. Hubby wanted to take me to the ER, but I am so stubborn & said no. BP shot up to 152/101 with a heart rate of 42. Finally called the nurse line with our insurance to see what I should do. Nurse was familiar with pituitary tumors & advised that I need to call 911, go to the ER or call my primary care dr on call right away. I didn't do any of them. Decided to wait it out longer. Did get in to see a new primary care dr Wednesday morning. Took copies of bloodwork that was done in March. First thing she noticed was that I am now hyperthyroid, low normal cortisol levels, low TSH, low growth hormone, high cholesterol (229 with LDL 160) etc. Said I needed to get in to see a different endocrinologist & neurosurgeon right away for a 2nd opinion. Called a neuroendocrinologist out in Seattle, WA that several people recommended from another website. Talked with him Wednesday night. He seems like an amazing dr!!!!! He said I should have dialed 911. He said my cortisol levels are too low for someone who has been through 3 surgeries on the pituitary along with the other levels being off. He is concerned that what happened on Tuesday was that my cortisol levels dropped too low. He said this all would definitely explain the symptoms I have been having for the last several months. Also concerned about this mass being possibly back & is causing problems. He has been in contact with my primary care dr. Back on 20mg of Cortef in the morning. He is having her run some more baseline tests until we can fly out there to see him. I sent my MRIs, lab work results, etc out to him to determine if I need more surgery and/or radiation & to confirm that this mass is back. If I do, we want to do everything in one trip. Will know tomorrow about the surgery. Either way, we are still flying out there to see him. Cardiologist also agreed with low cortisol level being the cause. What do you all think?? I am so afraid that I am getting my hopes up for nothing that we finally are getting answers. BP & heart rate have been doing better since being on the Cortef even though having another rough night tonight (heart rate started dropping again a few hours ago. bp did drop too low, but now its too high). Took Cortef about 7:30am this morning. Haven't called the dr yet. Waiting it out again. Any info would be greatly appreciated. Thank you & its so great to be here!!!

P.S. Also diagnosed with osteopenia a year ago, which I found out the other day that it is still there.

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