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Pituitary Disease Message Board
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Old 09-03-2011, 03:40 PM   #1
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Join Date: Sep 2011
Location: Wisconsin
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acheersfan HB User
It just HAS to be my pituitary, right??

I'm thrilled to find a pituitary section!! I'll try to keep this as brief as possible...

My name is Karen, I just turned 34. In 2008, I had severe pelvic pain for months and eventually had surgery, discovered early stages of endometriosis. Rather than experiment with more birth control to 'treat' the symptoms (I have side effects to just about every med out there...), I found a doctor that let me experiment with bio-identical progesterone. Good news - it helped the pain! But... I still felt awful once the pain was gone. Exhausted, lethargic, brain fog, etc. It just wasn't me.

So, my doc and I did a lot more digging around and found that in addition to progesterone... estrogen, testosterone, FT4, and cortisol were low. FT3 was borderline low, and so is DHEA. TSH was just fine and dandy (and has been for the past 15 years that docs have been testing it because I always have hypothyroid symptoms). ACTH stim test showed ACTH levels on the very low end of the range, but I stimulated well (cortisol levels were more than 3x starting value, which was borderline low that day).

Although my GP rocks and is all about trying to get the body to work how it's supposed to instead of just masking symptoms, I went to an endocrinologist this spring and convinced her to test a whole bunch of stuff. She seems to think my levels are 'fine' even though they are low or at the very lowest of 'normal', but I convinced her to order an MRI to rule out a pituitary tumor. That came back clear and I sent the useless endocrinologist packing... I'm slowly making some progress and feeling a bit more like myself with some tweaks to my hormones, but still feel like I have a long ways to go... Super irregular menstrual cycles, weight gain, loss of energy, don't recover from exercise, fatigue, feel like I have a case of the 'zombies', etc. Which brings me here!

I am currently on:
- Estrogen (E2 & E3) - just started this last month and the brain fog isn't as bad
- Progesterone - I've been reducing my dose a bit, want to get the most benefit without having too much in my system
- Testosterone - for my non-existent sex-drive
- Hydrocortisone - I tried this before but had an awful case of the jitters. I'm back on at a super low dose and am starting to feel the jitters again, but have the energy to make it through more of the day
- A gazillion vitamins and supplements per my doctor
- Drenamin by Standard Process (supplement for adrenal support)
- I was on naturethroid but my adrenals aren't up to speed yet so we put that on hold for the moment.

So here are my questions:
- How do you get someone to actually diagnose a pituitary disorder? I can't even fathom how I can have SO many hormonal deficiencies and have it NOT be a pituitary disorder?
- What good resources are there out there to learn about the ins and outs? I'm a geek and like to read as much as I can about what's going on.
- For those experts out there, what am I missing??? What else can I have tested, what can I try, etc.
- Hydrocortisone - it doesn't seem to do well in my system and I get super jittery... I thought it was supposed to help! Any tips, alternatives, etc.? When I was on a higher dose, within a week, I was ready to rip my skin off. It was the closest I ever came to a panic attack, and I'm not a panic attack kind of girl!

Sorry - I realize this may be a lot to tackle in one post, but any tips, info, or advice would be very much appreciated!

Thank you!

 
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Old 11-21-2011, 06:04 AM   #2
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Join Date: Nov 2011
Location: London
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fffeisty HB User
Re: It just HAS to be my pituitary, right??

HI there,
For years I did not feel well - and I am talking about 40 years here!! I have finally been diagnosed with something called Adiposis Dolorosa or Dercum's Disease which makes you put on weight and covers you in lipomas and angiolipomas. This is not a fun disease...

However, someone, somewhere along the line, suggested I do a IGF-1 test to test my Human Growth Hormone. I found that to be quite funny at 55 years old..... however, when it came back so low that either I was not born yet or I had already died, I was left wondering. The Endocrinologist confirmed that he had never met anybody with a Pituitary malfunction without an adenoma or tumour of some kind, so I was one in several million!

HGH is a master hormone and is necessary for all sorts of things so I get HGH injections once a day which I do myself and feel a million times better. Have you had yours tested yet? It is not something doctors think to check in adults, but it really is necessary. It is a cheap blood test, but the treatment is very expensive........

Perhaps you should have yours checked?

Fx

 
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