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Heike's Story...

Hello Cushing's Friends! I was 27 years old when I was diagnosed with Cushing's Disease. My first symptoms included high BP (180/130), no periods, frequent urination at night, acne,... The internist gave me Beta Blockers for my high BP. The dermatologist gave me acne meds. The gyn put me on the pill and then I had a surgery of the bladder to help with frequent urination. All to no avail! Finally I was referred to an endocrinologist who diagnosed me a few months later after many many tests. The surgery was performed in Hamburg / Germany. It was exploratory because the tumor was so small and could not be seen on the MRI. It was successful, although recovery was terrible. I was suicidal, had an adrenal crisis, was hospitalized another 2x and had to be tapered off steroids over a 1 1/2 year period.

Thirteen years later, after having given birth to three wonderful children, I noticed symptoms of recurrent Cushing's (broke a foot, had high BP, swollen face). My endo here in FL did not believe it could have come back after such a long period. I insisted on tests and even had the IPSS done (which was unnecessary because recurrent tumors are always in the same spot). My diagnosis is definite: Recurrent pituitary gland tumor. Again, it is not a visible tumor which will make it very hard to remove. I am seeing Dr. Roper at Shand's Hospital in Gainesville and will have surgery on June 28, 2006. I am very fearful of the post-op period. If this surgery fails (50/50 chance) I will need to have my healthy adrenals removed.

I really never felt bad with Cushing's. I have plenty of energy, but do have joint pain this time. The post-op period 13 years ago was horrible, but I know I cannot live with this disease, so I have to have the problem fixed. My youngest child is only 9 months old, so I have to get better!!

Wish me luck!

Update July, 2006:

I had my pituitary gland surgery a couple of days ago. It was not successful since the tumor was not visible and the gland itself too small to take biopsies of (due to the first surgery). Now I have to choose between a bilateral adrenalectomy or stereotactic radiation. I think I will opt to have radiation done this month and see if it works.

It is a little depressing to have gone through the transphenoidal surgery without being cured

By the way, the joint pain has stopped since I got off Actonel, a medication for my osteopenia!

Update July 17, 2006:

I have decided to go through another, third, transsphenoidal surgery. My surgery is scheduled for August 22, 2006. I am having a very experienced neurosurgeon, Dr. Luedecke, in Germany repeat the procedure. He thinks that I have a plus 90% chance of cure. He successfully removed the tumor the first time, 13 years ago. I am hoping that he will cure me once more. I think that my last pregnancy caused the the regrowth of a few existing tumor cells. I will keep you posted!

Update: April 2007

I had my third surgery of the pituitary gland done in Hamburg/Germany last August. Dr. Luedecke was able to cure me once again. Hopefully, I am done with brain surgeries now.

I developed Diabetes Insipidus after the surgery. It seems to be getting better, since I don't need to use a lot of Desmopressin (and some days none at all). It was very difficult balancing the fluid intake and the use of the medication. I landed in the ER three times and was hospitalized twice for hyponatremia. It was a very scary experience. For three months I had to keep a written balance sheet on what I took in and what I put out. Not very funny having to carry around a measuring cup in your handbag everywhere you go. I am still taking 20 mg of Cortef each day, trying to reduce it by 2.5 mg every 4 weeks at this point.

I was not very big when I had the surgery, but I have lost 20 lbs. anyway and I weigh 115 lbs. My face is very slender again. I hope that I will never again be affected by Cushing's Disease. And I will always be greatful to the best pituitary surgeon in the world: Dr. D.K. Luedecke. THANK YOU, Dr. Luedecke.

Update December 2007.

Well, it has been 16 months since surgery. My expectations from my last surgery were set too high. Yes, I seem to be cured of Cushing's, but at what price?

I had chosen the 3. surgery over a BLA for good reason. It did not seem to make any sense at the time to permanently remove healthy organs and leave in the tumor that would possibly cause problems later.

Now, in hindsight, I think it would have been wiser to have the healthy adrenals removed. When I made the decision in 2006 to go to Hamburg, I took the risk of losing hormonal function, but I did not think that would happen. I have lost almost almost every single hormone and I am having difficulty accepting this situation.

I am replacing all hormones (including GH), except for TSH which seems to be working because I have 15 nodules in my thyroid which seem to be working indepently of the pituitary gland. The most difficult loss I deal with is the ADH which has caused me to have partial Diabetes Insipidus. I despise this condition more than I did the tumor.

Also, I have frequent bouts with depression, either related to the hormonal imbalance or because of my negative thought process. I do work out again at the gym, and I have given up my studies in nursing. On top of taking my replacement hormones I need Ka, and Ca. I feel that keeping up with my health has become a major effort.

Click on thumbnails to view larger:

First picture is of me with my family in December 2005. My youngest is only 3 months old. Again, the moonface is obvious and I am convinced that I have the tumor again. [Photographer: Heike's family]

Dr. Dieter Luedecke and myself 4 days after the surgery. [Photographer: Heike's family]

Myself on Thanksgiving 2006, 2 months after surgery. [Photographer: Heike's family]

Taken today, April 22, 2007, 8 months after surgery. [Photographer: Heike's family]

Update February 2009.

I just have to let you all know that since starting the thyroid medication, Synthroid 25 mg, I am doing really well. It was the final hormone that was missing in my life. The symptoms were typical for hypothyroidism, but mainly I noticed confusion, forgetfulness. After being on the medication for about 2 weeks my symptoms improved greatly. I have been doing really well since then. By the way, my T4 was on the low side of the healthy range, but it was just not enough for my body. Also, the symptoms of hypothyroid really appeared after being on the Growth Hormone for 9 months. The normal range levels of IGF1 unveiled the low thyroid function.

I had almost given up hope that I would ever feel 'normal' again. Hang in there.

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