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.
i thought i would give all an update and it has taken me months to get back to normal self after feeling sorry for myself.
endo has said that i can go on other drugs if we want to have a baby, once concieved then i would have to come completely off drugs.
this scares me as the tumour could get bigger and may present more problems for me. i dont know if appearance will cahnge again, hands and feet etc etc. i really dont know what to do. i dont know if i can handle being pregnant and hvaing all the aches and pains again putting on enormous weight again not just the baby weight but acro weight as i call it. as i dont know the rate of any of this its really starting to get me down as i dont knwo what to do for the best. the endo said i would be the first acro pewrson at the hospital to hvae baby whilst having acro and they wont know what to do with me and would have me under constant supervision and scans all the time not just my head but baby too. I would like advice really if any body knows what sort of rate things would change??? and if i would lose funding for my drugs because of it?? (nhs)
endo has said that i can go on other drugs if we want to have a baby, once concieved then i would have to come completely off drugs.
this scares me as the tumour could get bigger and may present more problems for me. i dont know if appearance will cahnge again, hands and feet etc etc. i really dont know what to do. i dont know if i can handle being pregnant and hvaing all the aches and pains again putting on enormous weight again not just the baby weight but acro weight as i call it. as i dont know the rate of any of this its really starting to get me down as i dont knwo what to do for the best. the endo said i would be the first acro pewrson at the hospital to hvae baby whilst having acro and they wont know what to do with me and would have me under constant supervision and scans all the time not just my head but baby too. I would like advice really if any body knows what sort of rate things would change??? and if i would lose funding for my drugs because of it?? (nhs)
Love Lisa
xx
I was pregnant with my baby daughter Penny (born 11/07/08) with undiagnosed Acromegaly, possibly even had it when pregnant with my wee boy in 2006. As my doctor thinks my diabetes is caused by my Acromegaly and broad hands/feet then this would suggest I have had the disease for a while? I was only diagnosed 2 weeks ago. Other than the diabetes no other side effects came up that couldn't be attributed to being pregnant (joint pains, palpatations etc.). I think the changes come on gradually so may not be too drastic in 9 months. The doc noticed changes in my face in a year but quite subtle. I guess it all depends on the individual tumour and how it acts on the body. Wish I could give you definite answers but Acromegaly will affect each of us very differently. All I know is that I would have gone ahead with my pregnancies in any case accepting that there would be a lot of medical intervention (scans etc). My MRI scan to look at tumour not till next week so have no idea the stage it is at. Just wanted to let you know my experience in case it was of interest. All the best, will be thinking of you. Evonne x
vikki
to update the endo has put my fears to rest and all is looking good fro preperation for a baby. he said that everything is looking good thus far and i should start medication of a different kind for the first couple of months and then completely come off meds untill baby is born then i can have the meds im having now again. such a big relief. he said that acro shouldnt flare up so quick over 6 months so i should be fine and baby too. thank you to everybody for all the messgaes and support!!! and i shall be talking to vicki a whole lot more i hope to get as much info as i can bless her thank you so much sharing . i will defo keep yopu all up to date. i need to find out whjat meds it is then get them and trust me the trying wont be delayed....lol.
Enjoy :-) lol
I've spent a lot of time googling articles on acro and pregnancy and there's some pretty good ones that share some information like the following:
http://emedicine.medscape.com/article/127650-overview
http://books.google.com/books?id=mvYYWyj-s28C&printsec=frontcover&source=gbs_v2_summary_r&cad=0#v=onepage&q=&f=false
http://www.eje-online.org/cgi/reprint/155/2/279
http://jcem.endojournals.org/cgi/content/full/83/3/727?ijkey=cc943eccb09654942d0e5ff1449905a4b01e966e&keytype2=tf_ipsecsha
They also reference some other journal articles that can be helpful. And I've found some good advice on the other message board (http://www.acromegalycommunity.com/) under the "Women's Only" thread. Including some good info from Vicki who posted above (thanks again!). :)
And if you wouldn't mind my asking, what drugs has your Endo suggested you will be switching to before tying to conceive? Are you on SandostatinLAR now? Quite a few of the articles I read suggested that Bromocriptine is safe to take throughout pregnancy if needed. It's an older drug that they don't usually give to Acro patients anymore cause it's only effect in like 50%, but it's also used for almost all prolactin-secreting tumors. I've asked my doctors about switching to this, but they are avoiding the subject, lol!
I hope some of this info is helpful to you! Best wishes with everything. And be sure to keep us posted! :)