The voice of the patient in action.

Pituitary Word News co-founders Dr. Lewis Blevins and J D Faccinetti gave a talk on acromegaly at the recent American Association of Clinical Endocrinologists – AACE – conference in Los Angeles. JD provided a patient perspective. In an informal discussion – refreshingly sans PowerPoint slides – Dr. Blevins focused his talk on the central issues related to diagnosis, management, and treatment with particular emphasis to the challenges faced in acromegaly, which included, in no specific order:

  • A pervasive delay in diagnosis due to under-recognition of the disorder;
  • IGF-1 assays that are variable and often unreliable;
  • SSA’s (Sandostatin Analogs) that are not as good as initially touted, with conceivably the same problem with GH antagonist, pointing to the opportunity for the development of new drugs;
  • And algorithms that may not be the best approach to the management of patients with acromegaly;

PWN patients and readers provided feedback to a brief survey designed by PWN to elicit their perspective for the presentation. Here are a few examples of the comments (author name omitted):

Breakthrough symptoms & continued growth with controlled igf1. It probably ties into igf1 assays/variables not being reliable or checked as often as needed

“Took me 12 years to find someone to remove mine because of normal blood work (wait and monitor ) and still would be inside of me if I didn’t drop your name in the first 5 minutes of my conversation so I agree . Takes a long time to diagnose…”

You mean the challenges facing doctors who have patients with acromegaly? Because the challenges of those with acromegaly are nothing to do with the scientific values. Challenges facing acromegalics in relation to medics? Education, education, education. Medics in general do not have an understanding of the experience of being in an acromegalic body.

Biggest challenge is endos often unwilling to treat until symptoms are controlled. I am MD with acro IGF1 normal GH never suppresses. Symptoms are terrible. We learned in medical school to treat the patient and not the lab but physicians DON’T in this disorder. I have been traumatized by the way I have been treated

Acro not being recognized as a disability in some very difficult cases. Despite having multiple chronic symptoms.

As a professional therapist I am curious as to why a multidisciplinary approach to address psychosocial issues with Acro and medications is not often discussed….as it appears from the outside. Psychosocial issues is primary to compliance with treatment protocols along with chronic symptoms that might hinder treatment. Endo seems to be about nothing but the numbers…as evidenced by 4 different endos in the Greater Cin. area.

does anyone ever address the cognitive issues? Short term memory probs, anxiety etc

In terms of the main advances in acromegaly, Dr. Blevins explained that a cure is now best described as the achievement of a random growth hormone level less than 1.0 ng/mL and normalization of the IGF-I. If the growth hormone is not less than 1.0 ng/ml, then it should fall to under 0.4 ng/ml., after oral glucose suppression. Oral somatostatin analogs are currently undergoing clinical testing and may soon be available in the management of patients with acromegaly.

“The change in benchmarks means that we used to expect growth hormone levels to be less than five to indicate cure, but many of those patients were not cured” , he said. “Then we looked at GH level of less than two but found the same”, he added. “Now we require normalization of the IGF one and the growth hormone level as I mentioned above. Because of this change, early reports on the likelihood of success of pituitary surgery and acromegaly cannot be validated. We have set the bar higher to achieve a successful operation. This leads to a greater proportion of patients not being rendered disease-free but it’s a more honest approach to treatment in an era where we have medical therapy available to treat those with residual disease”, he concluded.

A few noteworthy comments from the Q&A session include:

The average patient with acromegaly probably sees 5 to 7 doctors who have not recognized the disease process. Many patients, however, may have never seen a physician until they present with something that leads to the diagnosis.

Most experienced pituitary surgeons who are qualified to operate on patients with acromegaly should have accomplished more than 500 pituitary procedures. The more, the better. Some pituitary surgeons who operate on these patients have done well over 1500 cases.

Close follow up is essential. Dr. Blevins recommends that if patients have been rendered disease-free that they have IGF-I levels at six-month intervals for 2 to 3 years and then annually. Otherwise, follow up depends on the extent of disease and residual disease in the different treatment options.

Physicians in the audience directed several questions to J D about symptoms once medical control is achieved, and his overall experiences with the disease.


Photo: courtesy of Kathleen Doheny, Endocrine News.


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