I have active, current acromegaly symptoms and complications, a pituitary adenoma, but normal IGF-1, so I can't get treatment yet. I've read of a few similar patients around the internet, but they are from several years ago and I could never find out what became of them or where they got help. Does anyone know of any pituitary centers or medical schools that can handle such a case? Thnx.
I don't know too many acromegaly patients but even in the few that I know, I have known a few that are cyclical. I myself was a cyclical Cushing's patient.
I had my tumor for 12 years and I can tell you that my tests were everywhere, largely normal, and many/most of the doctors told me that the pituitary tumor had nothing to do with the degradation of my health, at first slow then rapid.
Not every pituitary center or doctor will take on an "iffy" patient, but I urge you to start the search. Happily, your type of tumor can be treated with meds, and you can at least ask for a trial and see/prove that your symptoms abate with a trial.
Larger hospitals and university hospitals can have a pituitary center.
Thank you for responding. I saw your earlier posts about having normal blood tests despite being sick. I wondered how are you doing?
An orthodontist, with experience with acromegalics, also, suggested it may be cyclic. It would explain a lot, like I have some typical symptoms but not others; for instance, my jaw and tongue have grown, but not my brow. However, he can't correct the disfigurement to my mouth until the acromegaly is treated, and I can't get the acromegaly treated because my IGF-1 is normal. I have been doing this research since the endocrinologist first brought it up last summer. I have a list of excellent doctors and pituitary centers, but I can't really afford to travel just for them to tell me what my locals doctors are saying: "let's wait and see and retest in 6 months." But, I'll keep looking. Thanks again.
I would get your local docs to test your IGF-1 on a frequent basis to try to catch a high or pattern. Every six months leaves you at risk for a dangerous disease. Even your PCP can order this test. They may not be able to interpret, but if you have a good one, they can order so you have some basic testing - both GH and IGF-1.
I can tell you from my experience that there is no such thing as typical. People grow differently, people react to medications and people have different symptoms. I would make it a habit to take a picture every week or month, same light, same time, same place so you can track changes. Take a pic of face (smiling in your case), hand and foot with ruler. This way you can start to track subtle changes over time.
I used pics, tests and a lot of things to bolster my case.
I have all symptoms of acromegaly but have had normal igf-1 on 2 occasions the only abnormality was slightly raised glucose and low testosterone on one occasion . My symptoms seem to be predominately facial longer face ongoing jutting changing of jaw brow bone forehead longer chin cheekbones my head seem to have changed shape too , dentist picked up on tooth spacing x I have all other symptoms except skin tags and have the foot symptoms ( pain tinkling swelling heels growing into floor ) but no increase in shoe size x also I have periods (like for a day maybe ) that my swelling goes down although all bone changes are still occurring . I have considered psuedo acromegaly but I don't have dark patches associated with that and I don't seem to be insulin resistant by Drs terms anyway cause they tested me for diabeties and I'm not .i also have blurring , vision severe headaches facial body numbness on one side and vomiting which I had everyday for 2 years ,.had a lumbar puncture and the vomiting stopped for nearly a year but it now returning . This is not a coo incidence . I too have taken regular photos to note changes and they are very obvious , visible consistent with acromegaly ,but no dr will even look ag them or do more tests nothing cause of normal igf-1. I also have symptoms that seem to be suggestive of cushings although they are mild and come and go if anything if I have cushings it's cyclic . But my main concern is the acromegaly symptoms bone can't be reversed and I feel like I'm hitting my head against a brick wall here also . But having these cushings type symptoms is another reason I am convinced this is a pituitary Tumor but can't get a pituitary scan without blood being abnormal also a few people I have spoke to hthat have acromegaly haven't found their tumors yet . I would really like to know how you are getting on as I feel our situation is similar and it's hard getting no where and no one will help u . If you see this i would so like to hear from you feel free to message me .
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