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.
As it is still early days i was wondering if you guys had any info for me, how did you feel for the first trimester of pregnancy and what symptoms came back for you, if any??? i was due my injection 2 weeks ago now and the endo has said that i have to go completely cold turkey untill baby is born. so i have really felt crap this week, my arms are achy again and i can not believe how tired i am its been a long time since i woke up tired and was exhausted all day and crashing out when the kids go to bed... im looking forward to the rest of the pregnancy as im only 5 weeks but my god i cant wait untill they say here you go your next shot is due blah blah blah. i suppose im just having a bad day today! xx
I can't really offer any advice on what you'd feel like in the first trimester. Women in the first trimester often feel really very tired out, and may need to go to bed early. This often wears off once they get into the second trimester. I'm not sure if this is due to 'progesterone' or 'relaxin' or indeed some other hormone, but I know that progesterone levels drop right down to a plateau after the first trimester.
You ladies will know a whole lot more about it than me though.
It's advisable to have your visual field checked whilst you are pregnant if you have a pituitary tumour. A normal pituitary can swell by about 30% during pregnancy, so naturally if there is already a tumour there too, it could result in compression of your optic chiasm.
The placenta largely produces all the hormones for the embryo/foetus, independently of the pituitary. Keeping this in mind then, there are some cases of women staying on octreotide during pregnancy. This could be something to discuss if you feel the symptoms of acromegaly are getting very difficult. These are just the ones I've found:
Octrotide LAR treatment throughout pregnancy in acromegalic women:
(2001)
http://tinyurl.com/octpreg2001
Effects of octreotide exposure during pregnancy in acromegaly
(2010)
http://tinyurl.com/octpreg2010
Successful pregnancy in a woman with acromegaly treated with somatostatin analog (octreotide) prior to surgical resection
(1999)
http://tinyurl.com/octpreg1998
Octreotide therapy in pregnancy seems to be feasible and safe, enough information regarding the use of OCT in pregnancy.
(2009)
http://tinyurl.com/octpreg2009
Hope that's of some use.
Trys
PS Ginger biscuits are great, apparently.
www.acromegaly.wordpress.com
My students are in a culture where many of them get pregnant while they are still in h.s. and some of them have already had children BEFORE they've made it to h.s. One of the clues I have is their inability to stay awake. It's hard work for us to grow babies. The fatigue is there for mom's who don't have the acromegaly. I believe it's a normal part of pregnancy and since, Flouncy, you already have a few munchkins to chase around, you have even more reason to be very, very tired with this pregnancy. My DIL who had her 2nd daughter last June is dealing with full-time work, chasing the 4 year old, sleep deprivation & a chronic disease of her own (severe ulcerative cholitis). She's been tired for a while now and will be for a while yet. Hopefully you can find some ways to sneak in some naps here and there. They say that 10 to 20 minute power naps are good for us and they're probably even better for some one in your condition. Here's hoping that the sickness eases up really soon for you, that the hormones change around as your pregnancy progresses and you can enjoy what some of my other friends with acro described where they said they felt BETTER while being pregnant even though they couldn't have the drugs and here's hoping that Raging and the older children will pitch in and help you through this as you wait for the prize that arrives in what, November? So by Christmas you'll have a precious bundle to help your family celebrate and it'll make it all worth it. :-)
but apparently about 6 weeks so she cant give an accurate due date just yet but looks like will be around x-mas so will be a very nice present indeed. also talked to the endo pregnancy doc and she said something intersting that my other endo didnt bring up with me. jokey i might need your help remembering a name of a condition in a mo.. :) she said that with the skin pigmentation its very rare with acromegaly, and with my levels being not overly high in the first place she thinks it has somethink to do with my glucose. so i need to do a glucose tolerance test not an intolerance which is waht i usually have. she said about a condition that i know jokey has talked of before which is like acromegaly but isnt. ok now everybody is gtoing to think im crazy! but jokey please help me remember what it is. lolso she doesnt reallyt know if i have actual acro anymore just this other disorder. its going to drive me crackers now i have forgotten what its called. will have to get back to you all on that one. x