Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Hi Cindee, You are not the only one leaking breast milk. My baby is 8. I was diagnosed with prolactinoma right before having the DS. 5 1/2 years later.... still leaking milk. There is medication to shrink the tumor so surgery may not be necessary. My thyroid levels are also totally out of wack. After trying numerous thyroid medications I (Marta, I know it is wrong to self doctor -bad me) took myself off of the thyroid meds -- I FEEL SO MUCH BETTER!!! The thyroid meds made my heart race, made me hungry and made me more tired. I feel better now than I have in a long time. Not recommending, just sharing. I too have heard/read that WLS can cause liver damage - or maybe not so much *cause* liver damage but makes the liver more susceptible to damage. Hope you will be back to good health soon. I feel for you. hugs, cindylee > > Hi all, long time no hear. Lots going on, lifewise, AND health wise. > Got my labwork back today - Prolactoma is through the roof - probably why I > could breastfeed twins at the age of 40 with a 16 year old " baby " as my > youngest. Ray just loves to watch me squirt breast milk across the room and hit > him in the eye! I HATE not being " safe " enough to go out without breast pads for > the leakage! > > They are 90% sure I have a Pituatuary Gland Tumour causing the breast milk > AND lack of peroids (they stopped a year ago) as well as the double vision and > other symptoms.. I also have hyperthroidism, " apathetic hyperthyroidism " > they call it, rather than being hyper, sweat, nervous, etc..I am asleep, weak, > fatigued, etc... The Doc ants me to have an MRI on my brain too look for the > tumor, an Ultrasound of the Uterous (my third this year) to check on the > fibroid that isn't shrinking, and an ultrasound of the Liver because mine is > enlarged. I have read that Our surgery (The DS) can CAUSE fatty liver, has anyone > else heard this? There are too many symptoms of all these disorders to list > but ALL seem to stem from a Pitituatary glan tumor which also causes lack of > estrogen which in turn caused lack of calcium absorbtion and my calcium is low > AGAIN, and I was just dx'd with osteopenia - AGAIN after all this work > getting the calcium levels up, until the damn tumor is resolved, I am just going > to continue to lose calcium! > > GRRRR! I feel like I am going in circles! Most of my labs look great except > super low LDL cholosterol (28), super low calcium, super high Prolactin > levels as well as the hyperthyroidism! My dexa scan showed the Osteopenia is back > again, but as long as I am getting no estrogen and this damn Pituatary gland > is causing thyroid gland problems, I am NOT going to be able to get the damn > calcium up! > > Any advice, my doc is leaving town and blew it all off - I get to stat all > over with a new doc soon, thrills! I have researched it ALL and now what > needs to come next but no one is doing ANYTHING! I am at a loss! > > On top of it all, my 15 year old has a very painful hernia that needs > surgery NOW but getting him in for a CT scan here is taking WEEKS and the Doc was > willing to do surgery MONDAY dammit! > > HELP! ANYONE! Advice, opinions, etc.....? My kids found me unconscious in > the kitchen where I had lain for over 2 hours last week - could have been a > " thyroid storm " , who knows, but it was scary and while I was knocked out a > spider bit my neck and it has taken 2 weeks to heal THAT! > > I am just so exhausted, I felt like I was getting well, my calcium levels > were rising, now they are sinking fast! > Until this damn Pituitary Gland tumor is taken care of, I will have > hyperthyroidism, breast milk, NO SEX DRIVE (HAHA< talk about insane!) no calcium > levels to speak of, they say I have no estrogen, but instead of teating the > underlying cause, they want to hit and miss and try this and that. I just want it > fixed! > > What do you all know about the DS causing fatty or enlarged livers? My Merck > manual says that gastric bypass or removal of intestines can cause it, I do > NOT drink, so i know that's not the cause....... > > Just looking for anyone whose been there, can give their advice and opinions > - I am just feeling really lost and alone, I have lost 12 pounds in 2 weeks, > I eat constantly, hell, I LIVE on Tapioca pudding , Vitamin waters, rib eye > steak, and anything else I want, cookies, cereal, LOTS of jelly and peanut > butter, plouts, peaches, strawberies, all with tons of sugar or glaze! But I > just lose instead of gain! Another fun side effect of hyperthroidism! > > HELP! > > Cindee > > > > ************************************** Get a sneak peek of the all- new AOL at > http://discover.aol.com/memed/aolcom30tour > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Cindee, A Merck Manual in the wrong hands can be a dangerous thing. I suggest you spend your energy on finding a new PCP, if your physician is leaving town, as you say. Marta > I have researched it ALL and now what > needs to come next but no one is doing ANYTHING! > > > What do you all know about the DS causing fatty or enlarged livers? My Merck > manual says that gastric bypass or removal of intestines can cause it, I do > NOT drink, so i know that's not the cause....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 lee, I will try to be kind and not say " I told you so " when you are 240 pounds, face is swollen, kidneys in failure, etc, from low thyroid! Marta > My thyroid levels are also totally out of wack. After trying numerous > thyroid medications I (Marta, I know it is wrong to self doctor -bad > me) took myself off of the thyroid meds -- I FEEL SO MUCH BETTER!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Cindee Fatty liver? I don't think DS is a " common " problem with Fatty Liver Disease. Except in the first year during Rapid weight-loss. Liver labs tend to be 'off' and Dr. K warns that it is normal and the patients Primary care shouldn't be alarmed and doing liver biopsies. Rapid Weight loss does STRESS the liver. Beyond that it isn't 'common' in connection with the DS but of course YOU are Beyond that Rapid weight-loss period. And, YOU are anything but 'common'! (hugs) Liver Problems were a huge issue with the Jejunoileal Bypass. Requiring reversals. I have heard that Malnutrition (starvation) will cause Liver disease. And that eating Excessive sugar can make the problem worse. It is surprising how many Sugar addicts are actually Malnourished. I would suggest that you return to Dr. Z and run your problems past him. If the DS is a contributing factor (in your case) then perhaps you need to be on enzymes to aide in nutrition absorption and prevention of further weight-loss (instead of relying on Sugar). You can then concentrate on eating quality proteins, veggies and fruits, taking vitamins and calcium. I completely understand this won't solve your problems. But it can be a Bridge to better health until you can get under the care of a new physician to address the rest of your issues. I know you are a tough cookie with a soft center...hang in there, be a pit bull dog in seeking the care you need. Hugs Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Cindee, my 40 year old daughter has the pituatary tumor that they think you may have. An MRI should tell you for sure. At least hers did, along of course with other tests. The prolactin was what first tipped her doc off, but the thyroid and lots of other things can be related. Surprisingly her doc said her carpal tunnel was also a tip off. She is on meds to shrink it, but it is something she will have to be on for the rest of her life. One it is shrunk, you must keep taking the meds to keep it that way. Very important. It can be taken care of, it just takes time and repeated tests. It is not something that is going to happen overnight. I was shook up when she first told me, I mean not my baby having a brain tumor. Well it happens, and it is not something anyone did, it is only something that can be taken care of. So get ready for a battery of tests for quite some time and do it. You have to stay on top of it. It will happen if you do. My daughter is a living example. It is slowly shrinking. And I do mean Slowly!!!. I had no idea she had had milk since her oldest daughter who will be 18 in a few days was born. I dried up before I could feed my kids. So I never had those problems. So just keep at it. Prayers are coming your way. Pearl ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 Geez, Marta, thanks for the glowing prognosis..... > > lee, > > I will try to be kind and not say " I told you so " when you are 240 > pounds, face is swollen, kidneys in failure, etc, from low thyroid! > > Marta > > > > > My thyroid levels are also totally out of wack. After trying numerous > > thyroid medications I (Marta, I know it is wrong to self doctor - bad > > me) took myself off of the thyroid meds -- I FEEL SO MUCH BETTER!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2007 Report Share Posted October 29, 2007 Jo-lain (:-)) The insurance covered everything for me, so I can't give you even a ballpark figure. Well, it didn't cover the programme fee. I was in hospital for eight days. You ABSOLUTLY MUST have help when you get home. Do not begin to think that you can get along without help. You man not need much help, but you MUST have someone there with you. In hospital it's ok to have no support person because the staff is just a minute away. But once you leave hospital, you have to have help. Do NOT dismiss what I tell you, my new friend. Wiping was a problem for about a week, but I was able to do it and I was pushing 400 pounds. You'll have to figure out how to do it so it doesn't hurt, but you can do it. _____ From: DS_Friends_Keshishian [mailto:DS_Friends_Keshishian ] On Behalf Of Jolene Sent: Monday, October 29, 2007 7:01 PM To: DS_Friends_Keshishian Subject: Questions Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2007 Report Share Posted October 29, 2007 >First off,Congrats!!! I had surgery July 10 of this year. I was in the hospital for 3 days. In Tues am and out Fri noon. So the whole wiping thing wasn't that a big a deal. You won't have a BM for the first 3 days anyway. My husband helped me twice and that was just when my meds where wearing off and it hurt to bad to reach. Be sure to get the wet wipes made by Cottenelle they help with the cleaning. Another great thing to get would be Gas-ex thinstrips. I had horrible painful gas while in the motel. The thinstrips are great cause they relieve the pressure and you don't have to swallow them! Good luck!! Deidra > Hello my new friends! > I'm scheduled for the GRDS (open)Monday, Nov. 19th. I just received a > letter from Dr. K's office stating that the fees we went over > previously does not include any hospital charges. I should have > thought of that sooner, but silly me, I overlooked it. I'll be > calling the hospital tomorrow, but wanted to know if you all would be > willing to tell me what the hospital charges for the surgery and the > stay. > > How long did you stay in the hospital? > How much assistance did you need when you got home? > Were you able to wipe yourself after you got home after a BM? (I'm > currently around 310 lbs - will that make a difference?) > > I guess those are all I can come up with for now. Thanks in advance! > Jolene > Quote Link to comment Share on other sites More sharing options...
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