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Originally Posted by twins17  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
pituitary 
