Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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Endocrine System
/ Acromegaly Support Group

Moved to Hawaii. Need a local doctor.

Ngarcia
Ngarcia
Hi, I recently moved out of California, where I had established care for my Acromegaly at UCSF. I was diagnosed and had surgery in 2008, but struggle with a recurring tumor. I am taking Somavert. My doctor at UCSF continues prescribing my Somavert, but i realize that as other symptoms come up, that I will need someone locally for other things. Preferably a doctor that is familiar with Acromegaly. Anyone on the Big Island out there? Or even a neighboring island, that can recommend a doctor?
bella57
bella57
Wow. Another acromegaly in Hawaii. I felt like I was the only one. I was diagnosed here on Kauai. I went to UcLA for surgery. My insurance is with HMSA. My care is with Hawaii Pacific Health. I have few to no options. The endocrinologist comes to Kauai twice a month. I have seen her for all of my follow up care. 3 mos and 6 month. ( I just had surgery in May ' 13. ). I'd like to help you any way I can. But I don't know what your options are on the big island. Are you Kona or Hilo side? I have a feeling that the specialists may also come on scheduled rounds. Btw. I see Dr Chenin for my acromegaly. My after surgery blood labs look very good. I have become somewhat of a hypochondriac with all this crises and she reassures me that I shouldn't be worried. My hormones are low. ( too low?...that was my recent anxiety). Aloha
Ngarcia
Ngarcia
Yay! I am so glad to find someone else in the islands. I am almost equal distance between Hilo and Kona, so can easily go to either. Where is your doctor flying in from? Oahu?
I totally understand the "hypochondriac" feeling. I had my surgery in 2010 and still worry about every little thing. Just talked to my doc at UCSF and he is sending orders for blood test and MRI. I have someone local that can order the test, but she is not familiar with the disease. Good to hear from you. I will keep in touch. And will look up your doc. Aloha!
bella57
bella57
Yes. The endocrinologist flies in from Oahu 2x a month. She is from Straub, Hawaii Pacific Health. My six month lab results look good. I send them to UCLA as they keep research data. The endocrinologist there actually used the word "remission" in describing my results. Yay. But as I still worry I will feel more confident if the one year results (combining up in August) are consistent. I had an annual exam with obgyn today and I told him I thought my acromegaly had something to do with my menopausal " issues"--excessive sweating--which has decreased a lot since my surgery. He said no, it is probably just due to time. He said there is no correlation with growth hormone and menopause. I didn't feel confident enough to argue with him. What about all the other hormones? Any way he did comment on my rib cage. Hope you find the care you need on Hawaii Island(!). I lived there 5 years going to UHH and still use "Big Island". Hard to change.