Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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Memory

In all seriousness, does anyone know of any literature or studies on acromegaly and memory or concentration. Common complaint but it is not always on the symptom list. It is not asked about at appointments? I want answers?? Please share if you have anything helpful and I will do the same
Annie

Replies

J0KEYJ
J0KEYJ

I would so love any info also..I did read something on chronic illnesses affecting memory and that was good ..Ive not seen anything on acromegaly and memory ..I bet this is a deep subject and again not much information as yet so if anyone could find anything would be cool..
JaneyBell
JaneyBell

I have the memory issues too......not sure if it's the acro or the medication(Sandostatin) or just getting older. I was really embarrassed last night. My husband & I were having dinner with a couple that we haven't seen in a few months and I asked the wife "how's your Mom?".....her Mom died about 3 months ago. I knew that, I went to the funeral......my mind just doesn't think as clearly anymore. I find myself having to really think through whatever I plan to say.
deleted_user
deleted_user

Ohh Janey, I can so relate to that. I get in trouble all the time for forgetting things. I do have a planner with me. But boy embarrassing indeed!
Granin
Granin

Oh, yes! I knew I had memory problems, but it became so embarrassing. I work as a caregiver for developmentally and intellectually disabled adults. One of them passed away suddenly and there was naturally an investigation by the state into the circumstances. Thankfully I take really good notes during my shift...have actually gotten irritated comments about the detail I put into them...but it paid off this time. During my interview (3 weeks after the last time I had worked with this individual), I kept trying to remember what had gone on over those four days, and just couldn't! I was so ashamed and mortified...I just kept having to say you'll have to check my notes because I just can't remember! Later on, like a week later, sudfdenly some of those details came to mind. But on a positive note, the investigator thanked me for being so thorough! LOL, at the time I didn't know what he meant!

On the same note, I recently saw something about the changes in the brain due to excessive growth hormone (it could have been on this forum, I'm sorry, I really can't remember!). My endocrinologist, head of the diabetes/endocrinology department at Vanderbilt University Medical Center, today made a reference to that very thing at my appointment with her. It could also have been an article in MDLinx endocrinology.

Eileen
Lifespalette
Lifespalette

I don't know if it's getting older or another one of the gifts the beast blesses us with, but I've noticed my memory has dropped way off as well. Not so much the long term memories, things from my youth and early adult life are clears as snap shot...........it's the things from a week ago, a month ago or did I take my meds yesterday........

I notice it a lot more when I'm working on the computer using one of my cadd programs to draw. Execution commands that invoke attribute I need to use just aren't there and I've been using this program for 20 years or so.........simple commands I used without a thought, now I find I spend more time in the index looking for help to refresh my memory........

I've found that I need to keep a journal close by to write things down as I make appointments, notes that I need do something, phone numbers I need to call........just about everything........cause chance are if I don't write it down, I'll forget it by the next day if not sooner........
deleted_user
deleted_user

I found this by Dr. Katsnelson at Ma General Hospital.I don't know how to send or copy links, this is the best I could do. good old copy and paste.

Grattan-Smith et al described the spectrum of neuropsychological abnormalities in a series of patients with pituitary tumors. Although their primary interest was in patients treated with radiotherapy (38 patients), they extended the study to patients treated medically or surgically (27 patients) as well as a series of 21 inpatients with chronic disease used as controls. Specific tests evaluated patients by using eight neuropsychological tests in three domains: executive functioning, verbal memory, and visual memory. Both groups of pituitary tumor patients performed below clinically accepted norms on seven of eight tests, and performed well below the level of controls on tests of executive functioning, verbal and visual memory. Performance on the tests did not differ among pituitary patients treated with radiation versus other therapy. Although this study provides helpful descriptive data on neuropsychological abnormalities in these patients, the authors did not report the overall prevalence of specific deficits, and the study had several major limitations. The authors did not assess patients for depression, nor did they adjust for time interval since diagnosis and treatment. They were not able to adjust for other potentially confounding factors associated with poorer function including type of tumor, medication or recent treatment effects, and intercurrent illness. A final critical point is that since most patients had been treated before the study began, it was impossible to distinguish effects of the tumor from treatment effects.

A recent study by Peace et al examined 69 patients with pituitary tumors (23 each having undergone either transfrontal surgery, transsphenoidal surgery, or medical treatment), and 23 healthy controls . Some of the patients in both surgical groups received radiotherapy as well, and all surgeries were performed at least two years prior to the study. Attention, memory, and executive function were assessed using seven specific tests, in addition to a test for overall intelligence. The authors reported deficits in executive function and memory among patients with tumors, although patients treated medically had milder memory deficits. Patients treated with transfrontal surgery had the greatest degree of cognitive impairment, with 43.5% having three or more test scores below the 10th percentile. Among transsphenoidal patients, 30.4% scored below the 10th percentile on three or more tests, compared with 21.7% of medically treated patients, and 5% of controls. The authors do not report when surgery was performed and may overestimate the impact of surgical therapy given recent developments of new neurosurgical techniques resulting in less damage and less frequent use of anti-seizure medications which can also interfere with cognition. Radiotherapy treatment did not appear to affect test scores. Since treatment decisions are necessarily nonrandom, differences between treatment groups are subject to substantial selection bias and are not directly comparable. The strength of this study is that it highlights the high prevalence of cognitive abnormalities among patients with pituitary tumors, including those treated non-surgically.

In the largest study, Guinan described neuropsychological testing among 90 patients treated for pituitary adenoma of any etiology. Treatment groups included transfrontal surgery, transsphenoidal surgery with or without radiotherapy, radiotherapy only, and bromocriptine only. The investigators assessed general intellectual function, memory, executive function, language comprehension, and speed of mental processing. The authors of this study also found substantial memory deficits in all treatment groups compared with healthy controls. Anterograde memory was most substantially affected. Treatment group did not correlate with degree of impairment in general, although bromocriptine-treated patients had less impairment on one test of anterograde memory. Additional analyses showed no association between cognitive function and tumor type or time elapsed since treatment. This study was able to control for psychiatric disease and examine effects of interval since treatment. As with the reports from Grattan-Smith and Peace, the retrospective design limits evaluation of treatment effects, since selection bias is expected to strongly influence treatment choice and outcome. Nonetheless, these reports suggest that neuropsychological deficits, particularly memory impairment, are common among patients with pituitary tumors and persist long after treatment completion.

Summary

Patients with pituitary adenomas appear to be at risk for the development of neuropsychiatric abnormalities. Patients with Cushings disease appear to be particularly at risk for the development of psychiatric abnormalities. The available literature has not established an independent association between having a pituitary adenoma and cognitive changes when accounting for mass effect, hormone hypersecretion, hypopituitarism, surgical therapy and radiation therapy. Patients who report impaired memory or other neuropsychiatric symptoms should be evaluated with formal neuropsychiatric testing and referred appropriately based upon the results.
deleted_user
deleted_user

Hi everyone,

I was just wondering if anyone had anymore insight into memory issues related to acromegaly? I have undergone a debulking of my tumor (3 years ago), gamma knife (2 years ago), and am currently on Sandostatin which is only controlling my IGF-1 levels to about 700. My memory and concentration have been decreasing more and more over the last few years. It is severely starting to affect my work to the point that my managers have noted the change in my level of performance.

I have no idea what to do, but honestly I'm quite scared. I feel like I'm slipping away into this giant brain fog and I can't seem to get out of it anymore. Has anyone found any alternative therapies or other medications that have helped with this problem? When I note this issue with my PCP she doesn't seem to believe me as all of the problems I list are for "older people" in their 70s and 80s and I'm only 30. Thanks for any advice you all can share! I really, really appreciate any help!
Berthe
Berthe

Thank you Annie for this very interesting article.
Before surgery, noticed problems of concentration and fatigue, but memory was normal.
About a week after surgery, was surprised by a sudden sharp drop of short term memory : couldn't find simple words, didn't remember how to spell words, every e-mail was full of mistakes despite reading it 3 times (my job for over 20 years is mostly to write), couldn't memorize news names or remember where i've parked the car. .. Like Lifespalette, no problem with old memories.
2 1/2 years later, it's slowly coming back, but still far from what it used to be. Until now, can't do the job i was doing anymore. And it is sometimes very embarassing, when you ask again the same person : are you married ? Do you have kids ?
Forgot your name... You really can't remember, even if you try hard.

Talked few weaks ago with a girl who had a car accident with a brain trauma, what she described was very similar to the symptoms we share. But my transphenoidal surgery was a simple one : 30 minutes, a microadenoma, can't affect so much the brain.
If you find more explanations, please share !
Aworriedwife
Aworriedwife

I think this discussion displays one of the biggest frustrations with this disease. It is an orphan disease and there has not been that much research done on it. I believe that dr.'s have yet to discover all of the complications that this disease causes. My husband has definately displayed problems with his memory. Like others, we've chalked it up to getting older. Of course, we chalked half of his acromegaly symptoms to aging, which we now know was wrong. My husband has unexplained hematological issues. Low platelets and low white blood cells. I've found nothing to connect them to acromegaly, but feel like there must be a connection. As far as memory, with an acromegalic's skull growing, it seems pressure around the brain would have to change. Maybe this could explain memory problems. Dealing with this condition is very stressful and must weigh heavily on all of you. Stress can certainly affect memory. What about sleep apnea? Have any of you been tested and treated for this? My husband's endo. sent him for a sleep study and he had severe apnea. With a few weeks of treatment he's already much more alert.
wesley84
wesley84

I am so happy to see this topic being discussed! My memory before diagnosis has always been trouble.

However after my surgery in March 11, these past three weeks alone, I have been having serious lapses! In conversations I will forget my points, I will forget obvious names relevant in conversations all in a general feeling that my mind is turning to mush.

I am on Eltroxin 100 MCG, Testosterone Replacement, and on Effexor and Lorazipam for my Depression and Social Anxiety dissorder (which I believe contributed from my out of control social sweating Hahaha!).
deleted_user
deleted_user

Hi Annie,
I too kept on at my Endo, asking if there was a link between Acromegaly and poor memory, concentration, inability to multitask etc., as this has become a real probelm for me in my daily life, however, he always dismissed this, saying that these tumours should not affect our memories due to the position in the brain. ( I was never convinced by this) then somebody posted this on an Acromegaly facebook page.
I think you will find it very interesting. I am going to print it off and take it to show him at my next appointment!

http://neuro.psychiatryonline.org/cgi/content/full/17/2/159

Hugs
Lynne x
deleted_user
deleted_user

I'm glad this came up. I've been beginning to think I'm crazy or that Alzheimers is starting to set in and I'm only 37. I used to could multi-task like a demon and now I do good to stay on one task at a time. I'll be in the middle of a sentence and forget my train of thought. I forget words. People swear they told me something and yet, I swear they didn't cause I don't remember it.

There are gaps in my memory from before my surgery in September, not huge things but enough to be annoying. Since the surgery, I feel like I just can't think sometimes. I get overwhelmed and confused too often.

When I had my surgery, I participated in a study that was mostly memory things. I was supposed to get follow up things to fill out and do every three months I think but I haven't received anything. I wonder if they stopped the study.
Granin
Granin

What I've noticed about my memory, now having been on this journey (at least where I've become aware I was on a journey!) is that I will remember things, but long past the time I needed to remember...like days or weeks, and usually at night /early morning hours or when I've had a chance to relax and be still. To me that relates possibly to cortisol levels, though I have no idea where my levels of cortisol are. The excess cortisol perhaps interferes with bringing things up to shortterm memory. I don't know...just a theory.

Eileen
deleted_user
deleted_user

Interestingly enough when my husband visited the endocrinologist in Toronto one of the areas she asked about was memory and did my husband think it was affected. Two different answers between him and me. I believe it has, he isn't so sure. But I have noticed that he can't remember whether he has done something he thought he was going to do and other minor things like that.
Granin
Granin

Wow, Lynne. That article just about hit the nail on the head for me. I too am going to copy it and at least hand it to my Endo, if not email the link to it. To think that there may be help! I want to do some more reading along this line.

Eileen