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.
Hello All,
I've been experiencing headaches every second night/evening for the past month and half now. I am starting to feel the generalized headache behind my eyes and forehead is now increasing in pressure to about 10% of the ICP pain that I experienced pe-op in Mar 11.
My blood pressure has been increasing.
Last check my blood IGF-1 levels were at 308 just above normalized.
I am having another MRI in Jan 07 12, and I do have leftover tumor. Being tested for prolactinoma, and identified as GH secreting.
After 5 Months of Sandostatin could my IGF-1 levels be rebounding, as I have heard that they have that effect. And I am almost certain with my stress, constant incredible fatigue and tiredness is re-growing my tumor little by little.
Also for my Depression, I am seeing a Therapist. She believes that this article I had sent here;
Apathy and Pituitary Disease: It Has Nothing to Do With Depression
Michael A. Weitzner, M.D., Steven Kanfer, M.D. and Margaret Booth-Jones, Ph.D.
http://neuro.psychiatryonline.org/cgi/content/full/17/2/159
Holds some truth to my 'diseased pituitary gland'. She says it is an option in the future to place me on this drug Methylphenidate, as she believes it may improve my depression/energy levels and cyclic mood instability. However, she wants to consult with her colleagues.
Told her I am in no rush to change my current anti depressants and that I just want to get through to Jan 07 MRI and then Neurosurgery and then wait another few months to stabilize before starting anything new. She of course agreed.
Anyways... Sorry off track. How has everyone been dealing, are you dealing, with incredible fatigue? Days I cannot get up for more than hour and half and I already need to sleep for the rest of the day, cause my energy level is non existent.
Thoughts?
I've been experiencing headaches every second night/evening for the past month and half now. I am starting to feel the generalized headache behind my eyes and forehead is now increasing in pressure to about 10% of the ICP pain that I experienced pe-op in Mar 11.
My blood pressure has been increasing.
Last check my blood IGF-1 levels were at 308 just above normalized.
I am having another MRI in Jan 07 12, and I do have leftover tumor. Being tested for prolactinoma, and identified as GH secreting.
After 5 Months of Sandostatin could my IGF-1 levels be rebounding, as I have heard that they have that effect. And I am almost certain with my stress, constant incredible fatigue and tiredness is re-growing my tumor little by little.
Also for my Depression, I am seeing a Therapist. She believes that this article I had sent here;
Apathy and Pituitary Disease: It Has Nothing to Do With Depression
Michael A. Weitzner, M.D., Steven Kanfer, M.D. and Margaret Booth-Jones, Ph.D.
http://neuro.psychiatryonline.org/cgi/content/full/17/2/159
Holds some truth to my 'diseased pituitary gland'. She says it is an option in the future to place me on this drug Methylphenidate, as she believes it may improve my depression/energy levels and cyclic mood instability. However, she wants to consult with her colleagues.
Told her I am in no rush to change my current anti depressants and that I just want to get through to Jan 07 MRI and then Neurosurgery and then wait another few months to stabilize before starting anything new. She of course agreed.
Anyways... Sorry off track. How has everyone been dealing, are you dealing, with incredible fatigue? Days I cannot get up for more than hour and half and I already need to sleep for the rest of the day, cause my energy level is non existent.
Thoughts?
Thyroid and iron profiles in particular?
Chippyd has started on thyroid meds for low normal levels according to his recent post. Remember that reference ranges for all biochemistry are just that. One persons optimum levels may be someone else's troublesome levels.
Eileen
Thank you for your support and suggestions. I thank you for replying.
I know nothing about this drug Methylphenidate... First off I should start doing some of my own research into its history, clinical trials etc. But of course, the tiredness has been keeping me at bay.
Molehands, I have been having comprehensive blood work completed almost every three months about 8 pages of results. Apparently my Iron levels are 'around' the normal range. I asked my Endo if taking Iron Supplements would help and he brushed it off as if it was something I had wanted to try I could, but he wouldn't put much faith into it. So, I guess my levels were not that bad. I have the paper results here in my medical files, however I am too exhausted to go rooting through them.
I am on Thyroxin cause' my thyroid levels are low. Although, I'd think alot of patients with Acro have slow thyroids. Probably nothing new.
Granin, Molehands... I have been taken off of Hydrocortisone in Jun 11. Debult surgeory was in Mar 11. My Cortisol levels were low enough to warrant the medication. However, I was just then being taken off of Prednisone at the same time, which inhibits Cortisol production within the body. The Prednisone of course was an anti inflamatory from my Mar 11 Surgery.
At the time, my Endo told me to watch for any slow increasing fatigue (from what I was currently experiencing in Jun), and if I was starting to feel nausea, sensation to vomit.
Since the past five days I've had in the 'background' a low level feeling need to vomit, nauseated, and the progression of the past four weeks incredible fatigue. Hence this post. Could my cortisol levels be dropping? My last check in Oct 27 they were I assumed normal. The doctors didnt state anything.
I shall have to have them re-checked pronto with my Endo.
Hence my hesitation with wanting to start something new like Methyilphenidate. Granin, what level of fatigue were you experiencing before being placed on the drug? From 1 - 10.
Were you experiencing muscle fatigue as well beforehand? It sounds like a drug that isnt prescribed as much, is it a mood enhancer, alternative to something like Lithium?
LASTLY... I appologize. I don't want everyone to think this post is all about ME!... But I have had my CPAP Machine finally installed. For the past two days, it has been incredible in helping me sleep. No more waking up gasping... More sound, less restless sleeping etc.
Although, my tiredness levels has not made a DENT!... I woke up from a thorough 9 hours sleep, no problem with the apnea mask, no irritation. Actually feel asleep in great peace. Only to wake up with the feeling that I was STILL exhausted. So I went back to sleep almost 6 hours today... woke up again after the CPAP on... And I am STILL exhausted.
I know I am to give it time. My body hasnt been having a sound, healthy sleep for years I assume since my sleep apnea kicked in... But should I not be feeling at LEAST a littlle bit better by now?
Thank you, Best Wishes and Bless You Both!
Wes