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Pituitary Hypothalamus Axis Shut Down

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Can anyone please help me? Has anyone gone through any of these problems? I could use any help!

I've been reading and looking for information on the internet and I feel that maybe I could have a Non-Secreting Tumor ( near pituitary / hypothalamus gland) due to the symptoms I've been experiencing.

I've been to many physicians in the last 8 months and am now being treated by an Endocrinologist.

The Gynecologist told me today, during post-op (Laparoscopy) appointment that I was free of Endometriosis and no indications of PCOS. I was diagnosed with PCOS in the year 2002. This was when I stopped having a menstrual cycle (I was 22 years old).
I was placed on Birth Control (have been on since 2002) and two years ago a different endocrinologist placed me on Metformin. ( My Androgen levels were EXTREMELY HIGH).

Eventually, I stopped having menses even with being on birth control (to give you an idea, the first day of my last menses was 18 June 2008, which only lasted a day). I had three total menses for the year of 2008. This has been ongoing since 2002.

Symptoms that have gradually gotten worse in the last 8 months are:

Chronic Amenorrhea, Visual Disturbances (never had problems with me eyes and it comes and goes often), headaches, weight loss, diarrhea, hematuria / blood in urine (once a couple of months ago), painful burning urination (was 1 day per week every week - last occurrence was 2 weeks ago).

Recent labs showed
LH level: >0.1
FSH : >0.2

Medical Rule Outs have been made by:
Urologist: (Cystoscopy - No UTI or Kidney issues)

Digestive Disease (Endoscopy/Colonoscopy done in March showed only Gastritis)

Gynecologist: Normal Pap results; (Laparoscopy in April - no Endometriosis or indications of PCOS)

Optometrist: (Prescribed glasses/lenses) in January - 4 months of continul visual disturbance that now comes and goes - I do not need to wear glasses everyday - but it's so bad that I can't see near or far without serious squinting which doesn't help - but this comes and goes - no history of visual problems - for instance right now, I have no visual disturbance.

Endocrinologist: (Cortosyn Stimulation Test - performed a week ago) This Physician actually works with my Gynecologist. I go back for results / appt. with Endo. 27 May. The Gynecologist told me today that I have Pituitary Hypothalamus Axis Shut Down and that my Endo will be ordering an MRI of these glands with more testing.
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replied December 6th, 2009
Perhaps Celiac Disease?
Hi there,

Sounds like you have an awful lot of symptoms going on! They are so widespread that it sounds like it has to be from a larger cause. I am thinking it could be a nutritional or dietary issue. I'm not a doctor, but recently, my family and I have all experienced Celiac disease. It was triggered by a stressful event we all went through years ago and that's when the symptoms started. It took 10 years before we were diagnosed and stopped including ALL wheat in our diets. Some symptoms get better immediately, others take time and the body repairs itself.
Celiac is a wheat intolerance that is genetic and can be triggered by stress. The villi which absorb the nutrients in your small intestine are mistakenly attacked by the body's immune system when wheat is consumed. It's not an allergy, it's an autoimmune disease. The only solution is to not eat wheat. Diarrhea, the inability to gain weight, and no menstrual cycles are all symptoms that occur from being badly malnourished, which is essentially what happens when a person with Celiac is eating wheat. As long as wheat is being consumed, the individual will never be fully nourished, and as a result your body has all these weird symptoms that do not make any sense. I had super high cholesterol for example (despite the fact that I am fit) and bowel movements a few times a month. Since I have been off wheat, I have much more energy.
Just a thought..wouldn't hurt to look into it. Hope you find answers and good luck!
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replied August 25th, 2013
pituitary hypothalamus shut down
i am interested in what responses you got regarding further testing and why vision is a problem. my daughter also has shutdown of pituitart hypothalamus and vision problems. no one has connected them .
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replied August 25th, 2013
i am interested in what responses you got regarding further testing and why vision is a problem. my daughter also has shutdown of pituitart hypothalamus and vision problems. no one has connected them .
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replied December 6th, 2013
Pituitary shutdown
My pituitary gland shut down due to a traumatic motorcycle accident. I almost lost my life, my artery to my heart was severed and almost bleed out. That is when my pituitary gland shutdown to protect my brain. My period stopped completely, I went through menopause like symptoms, I even started to lactate. My prolactin levels were high. I had a cat scan done to my brain and it should a microscopic tumor in the pituitary gland, almost to small to see. My endo dr. put me on gabergoline, which is a fertility medicine and a pituitary med. I was told before the med. that infertility is a side effect of pituitary shutdown. After this med. I became pregnant. You have a lot more wrong then I did. All my issues are now under horome therapy with this med that I will take for life. I was told to never take birth control with a pituitary shutdown?? Make them take all the test they can to find out what is the problem. You know there are other glands that are effected when the pituitary gland is shutdown. Well can be effected. Make them take those blood tests. Like the Adrenal Gland hypothalmeus, etc. Look at the image of a brain online. Hope this helps
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replied January 6th, 2014
To skybleubutterfly,
You may have a pituitary microadenoma or macroadenoma. Tell your doctor to order a MRI of your brain WITH contrast. This may be the only way to detect it. Good luck!
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