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Hello. Not sure if you are still reading this thread but wanted to let you know I am praying for your daughter. It's tough to have to go through medical issues and must be tough on you as well. I had my pituitary removed 3 weeks after giving both to my daughter at the age of 22 due to a tumor. The tumor was very large so they had to remove my entire pituitary gland. I've been on steroids for 29 years and was told I would not be able to have more children. I tried fertility pills but nothing. Eventually after stopping the fertility I became pregnant but miscarried between the 2nd & 3rd month . The doctors were always amazed I had some sort of menstral cycle but felt j would not be able to carry to term and deliver another child. Through the grace of God 13 years after surgery I was able to have another child without fertility. By the way he's pretty awesome! I have developed Addison Disease and a few other issues. However, with all that I've been through and continue to go through without the removal of my pituitary gland I would not be here today. HT is crucial and doctors who know what they are doing! I believe with all the knowledge the doctors have and are learning on what patients need to thrive without a pituitary gland your daughter will be able to have a wonderful life!
How is your daughter doing with the HT?
Blessings
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By the way I take prednisone, hydrocortisone, thyroid medication, estrogen, oxytocin, testosterone injections weekly, b12 injections weekly, and GH injections daily. That's not all but that's my hormone replacement meds. :)
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No... no removals... that is SO dumb... for a start they don't even have a cure for PCOS, they even take out women's ovary's, they are just looking for "quick" solutions because  they can't be bothered with it but the reason your hormones are not right in the first place is medical researchers have found that the sexual reproduction genes in women with PCOS is different, they also found in female monkeys the pituitary gland dysfunctions or stops working the second a female starts her period and it's a genetic diesese.it's not the gland it's self, i'm sick of hearing about doctors and nurses blaming things...  one of  their favorites is to blame your weight and your diet and  they tell you it cures it 100%... bull... they are awful awful people for doing these things and it SHOULD NOT be authorized to remove anything... The puitary gland regulates  the adrenal glands, thyroid, metabolism, hormones and ovarys, so they are starting to feel it's a genetic glandular and metabolic diesese, they say a lot of stuff about insulin resistance too and may even give some women metaformin which is a diabetic drug to help regulate blood sugars, and i get this is the reason why they feel it may be a condition like diabetes, but as of yet there is insufficient information and they shouldn't be doing anything past offering the pill, but even THAT has it's problems... they just don't seem to care... it's just like ether they waste your time accepting your appointment only to fob you off or if  they find ANY potlucks have ballooned up to the size of a water balloon or bigger  they just say "off with the ovarys", or "just take the contraceptives" urgh... utterly irresponsible.

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Hi there, I was eventually diagnosed with acromegaly when I was 31, I'm 48 now, after a few years of really difficult symptoms which nobody knew what to do with.. I had transphenoidal neurosurgery to remove the macro adenoma on my pituitary gland within a few weeks of diagnosis. I was on Sandostatin LAR for some time but it wasn't controlling GH & IGF 1 levels, I've been on Pegvisomant for 9 years, injecting every day. As acromegaly accelerates osteoarthritis, I have had both hips replaced. I also had 25 days of radiotherapy 5 years ago. I'm now on HRT.
All through this, I've remained positive. Initially, I put 4 stone on in weight, difficult, very difficult after always being a fit & sport loving person. It's taken me 15 years to lose 2 stone. The inability to cope with stress & anxiety is testing, along with mood swings. Fatigue is also difficult to manage. The worst thing of all is the constant, and yes, I mean all day every day, headache. Ranges between level 3 up to level 9 pain on a 1 to 10 scale. This is debilitating. My last pain free day was 15/10/2014, I celebrated with a glass of champagne!
I spoke to, via a support group, a woman with acromegaly just recently, she stated: "The body is an orchestra; the pituitary gland is the conductor. We've lost our conductor."
I'm just being honest, I've struggled & still do with this disease on my own for 18+ years, but talking to someone with the same condition, & having a very good endocrinologist is vital. Good luck, be optimistic, be positive! 

 ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

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I had my pituitary gland removed when I was 9 years old because I had a tumor in my pituitary gland. As a result, I currently take the following medications, Hydrocortisone(Prednisone) to replace adrenaline and other missing hormones
Levothyroxine to replace my thyroid
Premarin to help me produce estrogen
Medroxyprogesterone to give me a menstrual cycle
Levyteracytam to keep me from having seizures
Desmopressin to keep help my body to hold water so I don't dehydrate
Genotropin to help me to grow normally
I may have misspelled some of these but in general they all help me to live as normal a life as possible. Some of them cause mild depression, mood swings and weight gain, but without them, I would not be able to live.

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My son had to have his removed when he was 22 he now has to take cabergoline testosterone shots Cortef. Which is a steroid and thyroid medication he does gain weight really. Bad with the meds and they are quite expensive and if he gets sick he's has to quadruple the steroid it sucks but he's alive thank the lord

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I know this has been over a year but any chance you are still on here or monitor this site?
***this post is edited by moderator *** *** posting private e-mails is not allowed*** I had a benign tumor all around pituitary and had it removed in 2001. Yes, the DDAVP is tricky for sure and yes, we BOTH could win drinking and urination contests if we wanted couldn't we? I assume you are a male with testosterone replacement? I have been on tesopel pellets for years and like them, BUT IT AINT" the same!!! At any rate, its been 16 years and this is the first time I have actually reached out and discussed with anyone that has experienced the same and would like to chat if you are still here. David

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Hello, I have a pituitary tumor. I am waiting for them to do my surgery. They said my pituitary has to come out. Also i have to see a eye doctor. Cause i could or couldn't use my eye sight.
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I was diagnosed with pituitary gland disorder because my prolactin levels 2 years ago go up to 100 my endocrinologist did an MRI blamed it on a health food I took and gave me carbogaline to bring the levels down they went down now 2 years later they are rising again so he put me back on the medicine with no Ct scan or MRI I been having chest pain for years and I'm thinking it might have something to do with these pills
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Hi i have had radiation aswell on my pituitary which is slowly dying, could i ask why you had yo have IVF to conceive?
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I would recommend estrotest as HRT, and I would not stop it due to scare tactics on news or with doc. My gyno, takes care of this part not my endo...tho either can refill the perscript of course. Educating yourself on how all parts of your body works together is the best. ONE THING I would remind you and anyone who has this medical issue....adrenal crisis is deadly and as you grow older, as with a child...you will go thru phases that constantly change. I'm now 59 and have had to take more emergency injections because nothing works right anymore. HEADS UP.... due to all of this and the cortef your skin becomes so thin on arms fingers the top layer can slide back if hit gently or grabbed. Start now using VIT C L ascorbic acid lotion. Not OTC, as an RN I knew the basics, living it is much different. I was 23 when the first treatment for the mass began. Then had to have 3 brain surgeries in 94-95 due to the masses reoccurring only bigger and sooner. I can honestly tell you, educating yourself on everything in your labs, stays and keeping copies can save your life as you are. Being an RN was like just knowing my abcs, compared to living without the Pit-gland. The more you know the better your life will be. And your sex life can be great too, mine is even at my age and I lost my uterus n ovaries before I was 38 in separate surgeries due to cancer. In the end, the biggest issue becomes the steroid replacement....The rest balances out and when they do ...refuse to let them be touched or changed. You have the right. My Endo told me at this point he was learning from me now. Good luck to all without the Pit-gland. I pray for you
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Im about to schedule 2nd surgery to remove tumor on pituitary gland. Been almost 4 years since 1st surgery. Tumor has doubled in size and now next to it a 1mm lesion. Talking about removing pituitary gland. But probably is I also have clotting disorder and can't take hormones cuz of it. And I'm allergic to hydrocortisone. I also have lymphoma and can't do chemo cuz allergic to main ingredient. What do I do? I don't want to keep having surgery every few years.
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I had the entire pituitary gland and stalk removed almost 5 years ago because it was invaded with a rare cancer called neuroendocrine carcinoma. As long as I take Synthroid (replaces thyroid hormone), hydrocortisone (replaces cortisol), and desmopressin (replaces kidney hormone), I am fine. I am not depressed, sick, or dead.
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Low sodium is probably due to too much DDAVP use. I've been there and done that!
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