× Hypopituitarism is a general term that refers to any under function of the pituitary gland. This is a clinical definition used by endocrinologists and is interpreted to mean that one or more functions of the pituitary are deficient.

Experienced Endocrinologist please!

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Replied by PNA-Tammy on topic Experienced Endocrinologist please!

I'm sorry to hear that you are having trouble getting the care you need. It sounds like you definitely need an experienced endocrinologist as soon as possible. There is a list of endocrinologists with pituitary experience here on our website. Here is a link:


This list includes neurosurgeons, endocrinologists and other doctors with pituitary experience. If you cannot find an endocrinologist in your area, one of the doctors on the list may be able to refer you to someone. Keep looking for a doctor that can help. Sometimes we have to go through a few before we find the one that will provide us with the best care available.

Take care,
Tammy Mazzella
Pituitary Network Association
3 years 7 months ago #10298

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  • End0disappointment
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Experienced Endocrinologist please! was created by End0disappointment

Endocrinologist anyone? I am beyond frustrated and hoping someone can help direct me. 2010 Papillary thyroid cancer- thyroidectomy, 2011 Radioactive Iodine ablation due to lymph node involvement. Surgeon said high dose replacement and keep TSH extremely low, almost non-detectible. Endocrinologist didn't seem to want to do this. One even wanted to allow me to get to a TSH of 4.0! They began cutting my replacement in half and in half again until I was almost on nothing (be aware that I have NO thyroid) and they tend to focus on TSH.
I began to see another Endocrinologist that looked at the whole picture, including symptoms and he dosed me using T3 & T4 levels while looking at my symptoms also. I finally felt better! I lost 100 pounds and had energy- woohoo! 18 mos after I began seeing him, he stopped practicing.
During this time frame a large benign brain tumor was found, when I went to the ER for my "atypical migraines". You all are familiar with steroids and decadron was no cake walk. When I had to move to a new Endocrinologist, he wouldn't run anything but TSH again. He didn't listen as I begged him, he would cut my dose in half and tell me to return in 4 wks only to cut it again. I felt like the walking dead. My skin was peeling on my face no matter that I applied moisturizer three times per day. Forgive me for the detail here, but constipation ! I couldnt even sweat!
My neurologist did my MRI 6 mos ago, and I requested that he look closely at my pituitary. He did and said it was either empty sella or a cyst. After getting Endocrinologist to order T3& T4 not just TSH (btw the risk for thyroid cancer in not dosing high hormone is return of thyroid cancer). He said what I already knew- pituitary is not putting out any TSH, T3& T4 were in low range . He said my pituitary is basically dead.
Now, I really need an Endocrinologist that can help me. No one has even done anything about my pituitary. No RAI scan has been done since 2012. I have difficulty breathing that has increased since last December. I have pain under my left rib cage. Though there are a few things I have in mind, I am amazed that no one has checked pituitary hormone levels (especially in light of this). Also, my gums keep receding... get every illness, throat is always swollen.

Is there an Endocrinologist site?!
Thank you
3 years 7 months ago #10297

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