I'm doing a big back stretch right about now - lol. Checkin on posts is hard work! With the Labor Day weekend... I am so behind! AACK! giggle Anywhoo... I was saving this post thread to remind myself to check in. Laura is very insightful about checking the symptom list for acromegaly. Even in my own journey, my doctor initially thought I had acromegaly, as my facial features had coarsened, I had oily hair, oily skin, night sweats, increased numbers of moles, increased hand and shoe size. My test was normal too. I went to another pituitary specialist a number of years ago, and he did say that it was entirely possible at one time that I did indeed have acromegaly. He said it is rare, but not unheard of to have the hypersecretion disrupted because of change to the blood supply to the pituitary (as in pregnancy). The more common term is an infarct in the pituitary. Course... I thought he was full of jelly beans. The standard testing for acromegaly is indeed the glucose tolerance test and serum IGF-1 levels and HGH levels. Most endos are hard to get motiviated to go much beyond those tests. Here is a terrific article: Pitfalls in the biochemical assessment of acromegaly.
Pituitary. 2003;6(3):135-40. Review.
PMID: 14971738 [PubMed - indexed for MEDLINE] Dr. Freda is in the NY area. I can send you the entire paper if you are interested. Just email me. Here are some snippits: "Random GH levels cannot reliably be used to diagnose or exclude acromegaly [1,2]. Because of the pulsatile nature of GH secretion, the upper range of normal GH levels in healthy subjects overlaps with that of patients with active acromegaly. In addition,GHlevels in patients with active acromegaly have been shown with sensitive assays to frequently lie within the �normal� range reported by many commercial GH assays. Specifically, whenmeasured with these assays,GHlevels<5�g/L are not uncommon in patients with active acromegaly [3]. "Mean growth hormone levels cannot reliably be used to assess a patient for acromegaly. Whether derived from frequent sampling for GH over a 24 our period or over a shorter period of time, 8�9 hours, mean GH levels have often been employed to assess disease status and diagnose acromegaly. However, it has been demonstrated that especially in patients with milder disease, mean 24-hour GH levels can overlap in patients with active acromegaly and healthy control subjects [5,8�10]." "Comparison of GH levels measured in traditional vs. modernGHassays has shown as expected thatGHlevels measured by highly sensitive and specific assays are significantly less than those measured by polyclonal radioimmunoassays [3,17]. For example, in comparison of two particular assays, basal values of less than 2.5 �g/L by polyclonal RIA were generally less than 0.5 �g/L by IRMA, and nadir levels during a OGTT were about 4- fold less with the IRMA [3,17]. However, there was considerable variability among patients and this is only a comparison of one set of assays, so these results cannot be extrapolated to create conversion factors between assays. As a result, we cannot apply criteria for diagnosis or to establish disease remission in acromegaly that were derived with older assays toGHlevels measusured with assays in current use." " It is evident now that when highly sensitive and specific GH assays are used, some patients with active acromegaly, newly diagnosed or postoperative, can have basal or nadir GH levels less than 1 �g/L. With traditional polyclonal radio-immunoassays, a nadir cut off of 2.0 �g/l was considered appropriate for distinguishing acromegaly from healthy subjects [2]. More recently, a nadir GH cut off of 1 �g/L was proposed [6]. Some series have supported the cut off of 1 �g/L [27], but other data have shown that it may be too high and will miss some patients with persistent active disease" "In certain clinical settings, testing for GH suppression after oral glucose suppression may be unreliable for the assessment of acromegaly because failure of normal GH suppression can occur in other illnesses including chronic renal insufficiency, liver failure, active hepatitis, hyperthyroidism, diabetes mellitus, anorexia nervosa and other forms of malnutrition [1]. Without acromegaly, IGF-I levels should be either normal or low in these conditions, so elevation in IGF-I level along with persistently high GH levels would support the diagnosis of acromegaly in these conditions." " In one report, the serum IGF-I level was lowered into the normal range in a patient with active acromegaly with a co-existent protein losing enteropathy [42]." Laura - you need to see a new endo. ![]() You could start off by asking your neurosurgeon who he would recommend. Hope this helps... Minnie |
