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Pituitary Disease Message Board
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Old 10-17-2012, 07:26 AM   #1
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twins17 HB User
Unhappy pituitary

hi, i have been very sick for exactly 1 year as of right now.i have been to about 8 drs & nobody can tell me whats wrong.all they tell me is that my symptoms are very rare.im just wondering if anyone ever had these symptoms and maybe got a real diagnosis to what this is.symptoms are: LOW ADRENAL LEVELS ,LOW THYROID LEVELS,LOW ESTROGEN LEVELS,BUT HIGH PROLACTIN LEVELS.ive had no period for 1 year now.my major problem is the tremendous amount of weight gain .ive gained 80pds in 1 year.every part of my body is swollen. my feet burn and hurt every single day.i can hardly walk,cant bend,cant do what i normally would have been able to do.(and i was extremely active)ive tried every diet and exercise and nothing seems to work.i gain a HALF A POUND TO A POUND EVERY DAY.may be every other day i wll stay the same,but comes next day ,weight goes up again.i cant take anymore of this.i have 5 year old twins that i cant even take care of. drs cant explain the weight nor can they diagnose me.can any one possibly help with anything they may know on this topic, since these drs are utterly USELESSSSSSSSSSS.thank u so much-i forgot to add in the meds. im on 100mg of levothyroxin in morning and 10 mg of hydrocotisone am and 5mg at 4pm.thanks again

Last edited by twins17; 10-17-2012 at 08:33 AM.

 
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Old 10-22-2012, 06:54 AM   #2
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Re: pituitary

hi thanks so much for answering back.i forgot to mention that i did have an mri done. as amatter of fact i had 2 of them done&drs said there r no tumors there. thats why every dr i go to cant figure out whats wrong.its like a big mystery to every one.

 
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Old 11-23-2012, 06:33 PM   #3
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Re: pituitary

If your endocrine hormones are low you may have hypopituitarism....an under functioning pituitary. I see that you have twins. Did you have a difficult delivery with hemorrhage? Heavy bleeding during delivery is a leading cause of becoming hypopit from something called Sheehan's Syndrome.

When did you start thyroid and hydrocortisone meds and why?

 
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Old 11-25-2012, 04:59 PM   #4
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Re: pituitary

that is exactly what i just got diagnosed with.found a dr in rochester ny who only deals with pit.thats what her diagnosis was.hypopituitarism which is another word for lymphocytic hypophysitis.yes i did lose alot of blood during my delivery with the twins,but that was almost 6 yrs ago/i started my meds that u asked about in jan 2012.this dr started me on cabergoline to lower prolactin.this is my fifth wk and it alreaddy went down from 87 to 4 which is very good.she just canged my synthroid from 112 to 125 cuz its still low with the 112.so now will wait 3 more wks for blood and see what happens.the only other thing is the weight keeps coming on and my feet r still achy burning and swollen.

 
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Old 12-29-2012, 06:32 PM   #5
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Re: pituitary

make sure to get ALL your endocrine hormones tested.....sex hormones, cortisol, growth hormones etc. They may all need replacement. I'm a little confused about lowering your prolactin though. I may be wrong but I thought the only reason prolactin rose was when you had a tumor??? I thought you said your MRI's were clear.

 
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Old 01-27-2013, 10:06 AM   #6
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Re: pituitary

Quote:
Originally Posted by twins17 View Post
that is exactly what i just got diagnosed with.found a dr in rochester ny who only deals with pit.thats what her diagnosis was.hypopituitarism which is another word for lymphocytic hypophysitis.yes i did lose alot of blood during my delivery with the twins,but that was almost 6 yrs ago/i started my meds that u asked about in jan 2012.this dr started me on cabergoline to lower prolactin.this is my fifth wk and it alreaddy went down from 87 to 4 which is very good.she just canged my synthroid from 112 to 125 cuz its still low with the 112.so now will wait 3 more wks for blood and see what happens.the only other thing is the weight keeps coming on and my feet r still achy burning and swollen.
If you are still here Twins 17,

So sorry that you are having these problems. I am hypopituitary and in upstate NY. I have considerered going to the Rochester clinic to see if they can help me as well, it seems to be very hard to find anyone who understands this problem, or to actually run the tests according to protocol.

In my case we are treating hypothyroidism and nothing else, due to the fact that my other hormones are in range, albeit some of them lower in range and I sound just like you symptom wise.

It seems that in range endocrinology rules, and the patients symptoms and quality of life end in last place. Or in my case, we just start diagnosing new illnesses which in reality are stemming from the pit problem instead of getting to the bottom of it and treating where the problem originates from.

I'm curious as to who you saw and did you like them? Would you recommend them? At one point I communicated w/ a lady from Syracuse NY whose husband had gone there, he was a lawyer and was in rough shape. Basically they did nothing for him as he didn't have a tumor, she said it just seemed that they were more focused on tumors and pretty much disregarded him.

It's my understanding, that in my case, my hormones may just gradually decline or they could just stop, so in the mean time you just have to try to tough it out. Research that I've done shows that growth hormone usually goes first, followed by the others, TSH usually third or fourth(?).

I hope you are feeling some improvement with treatment, and with a Dr. who understands the disease and processes of it, do believe that you will feel human again. My heart goes out to you, I'll be waiting to hear from you.

Take care

Deb

 
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Old 03-27-2013, 07:23 PM   #7
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Re: pituitary

Hi sorry I didn't get back to u until now but I have not been on the site for a while..not much is going on except for the fact that they finally regulated my thyroid and my prolactin is also good.down to zero. The bad news is still no period.dr is actually starting me on the pill tom.and my cortisol level is still very low1.8. It's suppose to be 12 or18 something like that. So I'm still upset cuz that means I still need hydrocortisone and my period will never come on its own if it didn't by now......more meds...estrogen..besides hypothyroidism what else r u going thru.

 
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