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A bit confused..help please

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#1 Tammy


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Posted 02 March 2008 - 12:08 PM

Good day all! It has been a while since I last posted but things have gotten quite hectic around here. This is going to be rather lengthy and I apologize but I really need some advice and counsel here!
I had my first endocrinologist visit about a month ago (I had a pituitary removed in 1990 and have some damage to the gland), the good news is that most of my hormones are at a good level, all but the growth hormone and cortisol. An ACTH stimulation was done for the cortisol and that came back normal so we discussed what to do about the growth. He said that there haven't been many adult studies done to show if an adult taking growth hormone is worth the cost and time, we decided to forego the growth stimulation test based on that. I have been doing some research on the web about this and have found that in an adult low GH can lead to decreased lean muscle mass, muscle aches, muscle excertion, increased cardiovascular problems, decreased stamina, fatigue, osteoprosis and an overall low quality of life. I made him aware of the limited systemic sclerosis and even gave him a copy of the labs. He said that while he found them "interesting" he didn't think that it was anything that an endo would be concerned with. Now that I have found out some of these symptoms of low GH (sounds like some of the symptoms of scleroderma as well) I am begining to wonder if there is more to this low GH than previously thought. So now my problem is this: if he isn't concerned about it, do I need to bring this to my rheumatologist's attention and if so, what can she do about it (it's not her field)? She has already sent a letter to my primary care physician wanting a referal to send me to a pulmonary specialist. She also wants me to go see a dermatologist, that I have already done and go back in April. I feel like I am running in circles and not getting a thing done!! Does anyone have ANY suggestions or advice, I am ready to just throw my hands up and say forget it!!
One last stupid question, is it possible to miss diagnose calcium deposits as boils if a culture is not done?
Thanks All

#2 Shelley Ensz

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Posted 02 March 2008 - 02:24 PM

Hi Tammy,

I don't know any of the technical answers to your questions, but I'm sorry you are having a confusing time of it. I know how confusing it can be to deal with a variety of specialists. If you're not convinced that the endocrinology evaluation was entirely helpful, perhaps you could seek a second opinion from another endocrinologist, or ask your rheumatologist to refer you to one.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Missy



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Posted 02 March 2008 - 09:30 PM

Hi, I don't begin to know all on the wonderful subject of Scleroderma but I can share with you what doctors seem to be interested in helping me. I go to an internalist for all my Scleroderma problems. She is not an expert either but she is willing do stick with my case and help me find comfort. I am also going to Indianapolis Hospital to see a specialist there in a few weeks. My home town doctor is more than willing to work with whatever they suggest up there. I live in the Florida Keys so it is a miracle just to find a doctor. Good luck! B)
[quote]Smile, it truly is the only great thing that is contagious![font=Comic Sans Ms][color=#FFCC99] Missy