PKU.com Community Discussion Forum New to PKU.com Anybody home? Reply To: Anybody home?

#4370
Avatar of Missy
MissyB2275
Participant

Hello everyone. I am new to PKU.com. I was browsing the web and stumbled upon this site. My name is Missy and I am 31 yrs old and have classical PKU. I have never been off of diet. For that I am lucky as I hear from others how hard it is to get back on the diet again to prepare for pregnancy or just to feel better.
My husband and I are currently working on starting a family. I’ve had my levels in range for some time. My levels did go pretty high after I miscarried in 2003 and then the beginning of 2004 I was diagnosed with endometriosis. So for awhile there my levels were all over the place and because of the endo and the hormonal problems I was having and the meds they had me on I gained a bit of weight. I switched to a lower calorie formula and that is helping. It also helped in lowering my phe levels cuz after a week and a half of just starting the new formula my levels went down to a 5. I kept them there for awhile and then walla the beginning of this year I started having problems with my endo again and had another surgery. Finally my levels are getting back to normal. They raised all the way to 18 with all the problems with the endo I was having. Last month my levels dropped to an 11 so they are getting back to normal.
My husband and I are seeing a fertility specialist as that is the only way we will be able to get pregnant cuz of my endo and right now they are stablizing my hormone’s while I’m getting my levels back in range. Hopefully next week when I get them taken again they will be back where they need to be as my fertility specialist said that if all the tests next week are good then next month we can start on clomid. I’m getting older so I don’t want to waste anymore time. I would love to have 2 kids but if all I can have is one because of the endo then I will be happy but I’m not giving up without a fight.
Like I tell everyone I know…. my PKU is a cinch compared to my endometriosis. Maybe cuz I’ve never been off of diet and it’s just a part of my life.
If any of you need someone to talk to or to ask for my input on how to make the diet easier feel free to ask me anything.
Look forward to getting to know you all.
Missy

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional