Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
I am new to this support group, but I am hoping to find some comfort in talking to other people with this condition.
I was always a heavier girl growing up, despite being involved in sports my entire life. After years of dieting as a teen, questions started to arise when I did not have a period by 17. I was taken to a doctor and they found I had a prolactinoma. I was put on Cabergoline and after a few weeks, pounds literally fell off. It seemed like a miracle.
After my dramatic weight loss, I became so involved with health and fitness that I decided to become a personal trainer. I have dedicated the past eight years to helping others that struggle with weight and other issues.
I am now 23, and after my doctor tried to lower my dosage of Cabergoline, my tumor unfortunately grew back. My Prolactin levels were high last month and I have not had a period since they lowered my dosage, and they put me back on the medication taking .5 mg twice a week.
The past year has been hell for me. Being a health and fitness professional, putting on weight has been very hard. Even though I adhere to an extremely strict regimen of counting macronutrients, food prepping, eating lots of fruits and veggies, exercising at least 5 days a week with great amounts of grueling weight training and moderate cardio, I consistently am gaining weight. I am assuming this is because of the tumor growing back. I have been back on Cabergoline now about three weeks. I really hope that it helps. I feel trapped in my body. I am constantly in the gym and eating right and the scale goes up and up and up. I do not know what to do at this point. I cannot continue to train people when I myself am overweight. It is such a struggle. Even since starting back on the medication I have gained 4 lbs.
When I talked to my Endo about the weight gain she shrugged it off and mentioned that I could try going on a diet (I literally almost fell out of my chair laughing at this point). She told me pituitary tumors had nothing to do with weight gain.
Do you all struggle with this and if so, how do you cope. Has anything in particular worked for you?
Also I have heard that bromocriptine is linked to weight loss, have any of you seen good results on this drug?
sincerely
DESPERATE AND FED UP
I was always a heavier girl growing up, despite being involved in sports my entire life. After years of dieting as a teen, questions started to arise when I did not have a period by 17. I was taken to a doctor and they found I had a prolactinoma. I was put on Cabergoline and after a few weeks, pounds literally fell off. It seemed like a miracle.
After my dramatic weight loss, I became so involved with health and fitness that I decided to become a personal trainer. I have dedicated the past eight years to helping others that struggle with weight and other issues.
I am now 23, and after my doctor tried to lower my dosage of Cabergoline, my tumor unfortunately grew back. My Prolactin levels were high last month and I have not had a period since they lowered my dosage, and they put me back on the medication taking .5 mg twice a week.
The past year has been hell for me. Being a health and fitness professional, putting on weight has been very hard. Even though I adhere to an extremely strict regimen of counting macronutrients, food prepping, eating lots of fruits and veggies, exercising at least 5 days a week with great amounts of grueling weight training and moderate cardio, I consistently am gaining weight. I am assuming this is because of the tumor growing back. I have been back on Cabergoline now about three weeks. I really hope that it helps. I feel trapped in my body. I am constantly in the gym and eating right and the scale goes up and up and up. I do not know what to do at this point. I cannot continue to train people when I myself am overweight. It is such a struggle. Even since starting back on the medication I have gained 4 lbs.
When I talked to my Endo about the weight gain she shrugged it off and mentioned that I could try going on a diet (I literally almost fell out of my chair laughing at this point). She told me pituitary tumors had nothing to do with weight gain.
Do you all struggle with this and if so, how do you cope. Has anything in particular worked for you?
Also I have heard that bromocriptine is linked to weight loss, have any of you seen good results on this drug?
sincerely
DESPERATE AND FED UP
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
The endo also needs to be checking a free T4 as the tumor can cause secondary hypothyroidism. I started Synthroid about 6 weeks ago and feel like I actually have a metabolism again!! I've lost 15 lbs in 6 months after starting cabergoline and now synthroid.
I am watching what I eat and walking about 10-12 miles per week but at least I can lose now!
Good luck and don't get discouraged. I often tell people that I have a pituitary issue that caused weight gain. Keeps the snide remarks down.
Counterintuitively, I started taking MORE medication. I take a half tab of .5 Cabergoline in the mornings. I usually consume 14 or 15 tabs a month and that...got my Prolactin levels down.
But, my weight did not go down at all. The main things is...I feel better.
Weird med and weird disease.
If you don't already know about the PNA join and get the book. It talks about what happens to your body in detail when this tumor is having its way with you. Lethargy certainly makes working out harder -- and when you combine that will water retention and mood swings... Oy. A brutal storm, especially if your livelihood (and sanity) depend on being fit and having the energy to inspire others to be fit too!
Also, if you don't already know what your thyroid levels are (that would be odd to me -- it's one of the first things tested in my experience), have them checked. I've found that hypothyroidism and prolactinoma often come hand in hand.
Lastly, and some will probably find this nutty but, I started seeing a naturopath as well as my regular endo about eighteen months ago. After some testing, I was told I had some food sensitivity/allergies. I took that to heart, changed my diet and in addition to being steadily five pounds thinner (no inflammation), my auto immune thyroiditis (Hashimotos syndrome) is now undetectable, as is the auto immune arthritis I'd begun to develop. I don't really care what strictly western doctors tell me about that (they don't really say anything -- just kind of smirk), I live with the difference and it's significant. In weight, sure, but moreover in how I feel.
Good luck. And don't panic. You are not alone and probably want to get a therapist to help deal in the meantime.
I really thought I was making up symptoms until I found this support and realized that I was not the only one with issues. The doctors also told me that what I was experiencing was not associated with my prolactin. It is really tough but hang in there. It has been 20 years for me and it has not been easy. send me a message if you ever need to talk