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My daughter's story

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Replied by alexaz on topic My daughter's story

Instead of doing to and fro, I really suggest consulting some old MD's either offline or online. I was having  Hepatosplenomegaly  and different doctors were saying different things. That was really disgusting and it burned a hole in my pocket as well. 

I feel sorry for your situation and I wish it ends very soon.
1 year 2 weeks ago #10701

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  • corlissrod
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My daughter's story was created by corlissrod

I would like to tell my daughter's story and see if anyone can give me some answers. We are about to give up and not even try to go to doctor's anymore. I will just tell the history and try not to get side tracked with a lot of details.

My daughter is now 17 years old. She started her period at the age of 11 and half. She had normal periods for about a year and a half to 2 years. She started having problems in school and a lot of anxiety, panicky feelings, and heart palpitations. When school was out for the summer, she had a really bad headache and I had to take her the emergency room. It seemed like a migraine with light and noise sensitivity. A few months went by and she slowly got more and more of the same kind of headaches. Around the same time she stopped having periods. The last few that she had were very heavy and a lot of cramping. The headaches were so bad she looked like she would pass out and then wake up with panic in her eyes and gasping for breath. She would cry and hold her head until the doctors would finally give her medication to help. She is always tired no matter how much she sleeps, but has trouble sleeping at night. She gets nauseous, moody, angry, and she is very depressed. She is heavy around the middle and she has gained some weight. Her face is getting more round and swollen, and she has the buffalo hump on her back. Her arms and lower legs are more slender also. She also has dark skin around her neck, on her under arms and between her breasts, showing insulin resistance. She also feels dizzy on a daily basis. She doesn't really have a teenage life anymore.

An MRI was done and we were told she had a 2x3 MM tumor on her pituitary. After the MRI we were told at an emergency room visit that she needed a spinal tap and they took out 20 cc's of spinal fluid. We were told she had pseudo tumor cerebri. Later at an emergency room visit at another hospital they did another spinal tap and we were told she didn't have pseudo tumor. They gave her Propranolol (blood pressure medication, although she doesn't have high blood pressure) which has helped some with the headaches, at least the really bad ones. She has a constant headache now but not as bad as before, but we still go to the emergency room every month or two because the headache is out of control again. Another MRI was done and we told the same, she had a very small 2 x 3 MM tumor on her pituitary. After waiting for months for a referral and appointment with a neurologist, we were told he only treats headaches. There was an endocrinologist who could see her that same day. We saw her and we were told that little tumor isn't doing anything. We were told she probably has PCOS and needs to see the dietitian. We saw another endocrinologist after waiting months and were told the same thing without any tests being done. At my insistence some tests were finally done. These are some of the results.
GH in the morning was 2.8 and fasting glucose was 77, fasting insulin was 44.5.
At 60 minutes, GH was 0 .1, glucose was 145, and insulin was >300.
At 90 minutes GH 0.2, and at 120 minutes GH 0.3, glucose 132 and insulin >300. She has had one 24 hour urine test that was 38 - ref (2-38)
Another test they did for Cortisone URN was 119 – ref (15.0-108.0), total volume was 2328, Creatinine was 2188 – ref (700-1800)
IGF1 was 111 – ref(135-525)
Her AM cortisol was 0.6, She has had 3 late night cortisols that were normal and one that was 181. She has had 3 AM cortisols <50 and 1 that was 64.
I know some of these tests are a little off and also her TSH was not normal at times. These are the results at different times. 10.80, 6.467, 3.474, 3.94, 4.7 and 1.58. Her T3 and T4 seem to be in the normal range.
A few months ago another MRI was done because it had been a year and a half since the last one and the results showed a prominent pituitary but does not show a tumor. I don't know what to believe anymore or where to go from here. The doctor we saw last wants to put her on Lexapro, metformin, birth control pills and thyroid.
This has been going on for 3 years now. I think she has cyclical Cushings. But, I am not sure and I feel like the doctor's all think I am crazy. Can anybody help me with where we should go or what doctor we should see? Or should we just give in and try all the medications they are trying to push her to take?
4 years 5 months ago #10230

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