HELP! I Have Kallmann Syndrome and Where Can I Find a Good Doctor?

Question by um….: HELP! I have Kallmann Syndrome and where can I find a good doctor?
I am 22 years old male who has Kallmann Syndrome, a very rare genetic disorder. I have experienced 3 very bad endocrinologists who knew little of my condition or the side effects of the drug they prescribe to me.
For example, the other day I was with my PRIMARY CARE doctor and was going to make another referral, and she asked me if I did any cholesterol tests because people taking testosterone will have higher cholesterol level. Guess what? This is the first time I ever heard of it. Nor did any of them order a test for me.
Also, my mother is studying for medical school (another specialty) and she was reading her book (the general knowledge book that all doctors have to learn) and the book says testosterone has multiple side effects. It didn’t say if you take too much, it is going to have side effects; it says this will have side effects. Guess what these “specialist” say? No, this is perfectly safe. I will be fine with the answer that these side effects are minimum, but their answers show that they knew nothing!!!
So, I am tired of getting bad doctors so can you tell me where/how can I find a good doctor who knew what he/she is doing?

Best answer:

Answer by chafarm123
As you probably already know, Kallmann Syndrome is a hypogonadism (decreased functioning of the glands that produce sex hormones) caused by a deficiency of gonadotropin-releasing hormone (GnRH), which is created by the hypothalamus. Kallmann syndrome is also called hypothalamic hypogonadism.
You might have better luck with your physicians if you refer to your syndrome as “Hypothalmic Hypogonadism”,as med schools today seem to focus more on these labels, and therefore provide instant recignition, rather than the physician names for which the syndrome is named.
Yes, certainly taking testosterone when one does not have this syndrome is hazardous and has side effects, but taking testosterone for the disorder, helps to preserve your health, comfort and homeostasis (balance. In this sense, it is safer than not prescribing the missing hormone.)
Your medical care needs to be handled by a board certified endocrinologist. Only they will be able to competently manage your assessment, proper treatment, and be able to monitor other issues, particularly the potential for osteoporosis, for which you will need regular bonescans. Once you are stable and being managed well, elements of your routine medical care can be passed to an internal medicine physician SELECTED BY your endocrinologist. You could then visit your endocrinologist occasionally, and have normal medical care throughout life rendered by the internist.
The best source for endocrinology physicians who can competently advise and treat this disorder would be found at a university medical center which has a medical school. This is not as rare as was once believed, and excellent care could be rendered by the University of Virginia Medical Center, Dept. of Internal Medicine/Endocrinology, Charlottesville, VA. If you are out of this area, then you can call them, and although they are busy, they can help you locate the best center for you, in your own area. Very best wishes.

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