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Prolactinoma and weight issues

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Old 04-01-2011, 01:52 PM   #151
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Update on my prolactin level:
Had a blood test 2 weeks ago. My prolactin is now at 3. The endo has cut my dose in 1/2. Will get retested in another month. So far I have lost 21 lbs since I started taking Cabergoline. Since I am only taking 1/2 pill once a week, I noticed 3 days after my last dose I started getting headaches again. I took my 1/2 pill last night and today no headache yet but I do have some sinus pressure.
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Old 04-18-2011, 12:57 PM   #152
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Its been a while since I have been on here, I was diagnosed with a Prolactinoma 5 years ago, and thanks to the change in healthcare costs my insurance at the company I worked for changed drastically, where my treatment was no longer covered. Now I have moved to a different company where the healthcare is even worse, so I have looked into some homeopathic remedies. I have decided to use a vitamin B compound multivitamin, and try Chasteberry. Due to the costs related with treament, I guess the only way I will know if anything is working, is if the lactation decreases, or ceases to exist, and if my mentrual cycle returns. This is a big step for me, as I havent menstruated in 10 years, and got used to it, if it does return I am not sure how to handle that. but hopes are my husband and myself will be able to conceive and have a child together, I am not getting any younger here, and would love to have children of my own. I have 4 step children, I would like have one of my own
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Old 06-14-2011, 01:49 PM   #153
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Default Hair Loss and Bromocriptine

Hello everyone, I am brand new here and actually stumbled across this site by doing a search regarding hair loss and bromocriptine. I will tell you briefly about my story and I feel I can offer some positive encourgement and maybe someone can do the same for me. I was diagnosed with a prolactinoma in 2007. We (several doctors and myself) tried dostinex and then switched to bromocriptine to shrink my tumor with no success. I had surgery to remove my tumor in 2008 due to it invading my eyesight. My surgery was terrible and I had several complications. Within two months of my surgery my prolacin levels were on the rise again which meant either the surgeon did not get it all or it was already growing back. Which, either one of these scenarios is not all that uncommon. So on to the bromopriptine we go. I have been on this medication every day since 2008. During all of this I gained 50 pounds. I must tell you that this was out of my control. I never weighed more than 140 pounds my entire life and this was so not me!!! I also had and still have thyroid issues due to all of the complications. I am on replacement hormones for that also. It took approximately one year for me to lose all of my weight and then some. I am actually smaller now then before my tumor. Please just know that you cannot control what your body is going through. And it WILL come off. I am living proof. Stay strong. Yes you have been dealt a bad hand but you will get through it!!!

Now........ I have been having signigicant hair loss for quite some time and its really starting to show. Anyone out there have hair loss due to bromocriptine use??? I would appreciate any response and would be happy to answer any questions you may have.

Good Luck!!
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Old 07-26-2011, 02:11 AM   #154
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Question Frustrating weight gain!

I was diagnosed with a microadenoma in 2010 but I've been showing symptoms since 2008. I am 1.56m (5"1) short and I have gained 35 kilograms (roughly 80 pounds) in the last three years even though my lifestyle and eating habits haven't changed. In fact, I eat healthier now than ever before with smaller portions and more veggies. I do not drink cold drinks(sodas), only water. My biggest transgressions are a beer or three at night and minimal exercise but it's not as if I used to be the most active woman around. I am now 26 and grossly overweight and it's fueling my existing (yet managed) depression.

My GP told me about bromocriptine but the neurosurgeon recommended I stay off the meds until such a time comes that I want to fall pregnant. In the meantime, I look pregnant!!

If anyone has any tips or advice, please feel free to tell me!
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Old 07-26-2011, 06:51 AM   #155
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Hi there, I'm also new here! Although I have had no hair loss due to this, my nails have gone all wonky. My toenails are growing in at an alarming rate (I've never had ingrown toenails before) and my fingernails are more brittle than they used to be.

I'm trying to figure out whether I should go on Bromocriptine or not. All I know is that if I gain even one more ounce of weight I am going to go insane. I've never been this size in my life!
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Old 07-26-2011, 02:59 PM   #156
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Hello,

you just gave me a hope I could actually lose weight after my pregnancy. I went through a similar situation as you did. I have alwas had a bit higher prolactin levels but nobody actually advised me to do anything with it so I let it be. Anyway, when I met my current husband we were trying for a baby and nothing happened. So I went my colleague-gynecologist and he found out that my husbandś sperms are wrong. So we went through IVF as well. It was pretty hard. Immediately after stimulation I started gaining weight like crazy. Then I got pregnant (at our first try, thanks god ). During my pregnancy my weight kept on rising. But eveyone was telling me that after I give a birth the weight situation will be ok within 6months. Unfortunately, no way! I was not lactating as to our family depression anamnesis so the doctors stopped it right away. And now, after 7 month since the delivery I sussenly started lactating, lost my period, etc...I just did not know what to do with this so I talked to my husband (doctor MRI) and we made a check of my hypophysis by MR. Everything seemed ok. Unfortunately, my blood tests showed prolactin abou 309!! Very very high. So I went to my endo and was told that it is a microprolactinoma with a very high probability even thougt nothing was seen on MR. Also, just cannot lose weight. I gained about 79 punds, lost 33 after the birth and then it stopped. I tried everything but nothing works. Sometimes I think I am able to gain weight even if I do not eat and run all day. My endo has told me (also) that hyperprolactinemia has nothing to do with the weight. So I am extremely happy to hear that also other women have such problems. I almost lost the rest of my self-confidence. I used to be a pretty thin girl and now my size is 16/18 UK. Started with 10! Yesterday was my first cabergolin/Dostinex day. So I really hope the hormone level is the main cause. I will keep in touch. Hold on everybody. As you can see, even in the rest of Europe most doctors do not know anything about the relation weight gain/prolactinoma.
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I was diagnosed in 1998 and tried bromocriptine but decided that breast leakage was better than the side effects so I quit. I decided to get pregant in 2001 and the doctor put me on cabergoline. We had to do IVF to get pregnant since my husband was sterile from chemo but I got pregnant the first try at IVF. A bonus of this condition is I had no trouble breastfeeding!!! However, after failing to lose weight after much trying and a bout with mastitis 2 years after stopping breastfeeding, I decided to try cabergoline again. I immediately started losing weight. The endo who prescribed the cabergoline had also mentioned if I decided to get pregnant, I should switch to bromocriptine but I didn't ask about this as I wasn't intending to have another child anytime soon. But life changes and I decided to get pregnant again 8 months after starting. Since I had my first child on cabergoline with no ill effects, I decided to ignore the endo's advice. I also asked the fertility clinic if I needed to switch and they didn't think so, so I didn't check into the reasons why it was recommended to switch. Anyway, I kept using cabergoline and after first try with frozen embryos I am pregnant on twins!!! As long as your prolactin is low enough to allow you to ovulate, you should be able to get pregnant (if you or your partner have no other underlying conditions). Hope this info helps some of you. Don't give up hope of having a family if that is what you want.
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Old 07-26-2011, 03:27 PM   #157
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Hello all,

what a great forum! I went through all the threads and I am in the same situation as most of you. Only I feel with you regarding medical insurance. It is pretty sad that because of bad insurance you cannot be prescribed with cabergolin/dostinex which is the best (no doubt). In our country it is pretty cheap in comparison. 8 tablets of dostinex cost about 50 USD. Which is much better than 160. So I offer as we are a medical family. If anyone has problems with the insurance do not hesitate to contact me. If the price is ok for you I could send cabergolin/dostinex by post. I only believe it could help. Thanks god our insurance companies are still pretty ok with the medicaments. I wish you all the luck and strong mind with weight and hormone fighting!
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Old 07-28-2011, 12:04 PM   #158
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Default Prolactinoma & weight loss surgery

I am happy my husband found this site; it makes me feel better to know I'm not crazy. For at least 2 years I have been fighting weight gain, mood swings, foot edema, no periods, no libido, & acne. I am on Cabergoline, I am a strict vegetarian that enjoys outdoor activities, but no matter what I do, the weight won't go down, but in fact keeps climbing up instead. Needless to say this is very discouraging & depressing. I have done everything from yoga to extreme programs like P90X-during that time I gained 12 pounds. I am now considering weight loss surgery as an option. I was wondering if anyone here has considered it or is going to have it done.
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Old 07-31-2011, 12:03 AM   #159
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Why wait to start the meds? It makes no sense to me. Unless you can't handle the side effects but you won't know until you try. I went on and off of them through the years since diagnosis. And my endo said if I was to stay on cabergoline for about 3 years, he thought maybe that the problem would reverse itself and my prolactin level could go back to normal and stay there without drugs. I ended up getting pregnant so I'll have to try again later once I stop breastfeeding but it will be worth the try. Plus the weight loss was easier on the cabergoline. Not sure about bromocriptine though since I was never on that one for long.

Quote:
Originally Posted by Verbalina View Post
I was diagnosed with a microadenoma in 2010 but I've been showing symptoms since 2008. I am 1.56m (5"1) short and I have gained 35 kilograms (roughly 80 pounds) in the last three years even though my lifestyle and eating habits haven't changed. In fact, I eat healthier now than ever before with smaller portions and more veggies. I do not drink cold drinks(sodas), only water. My biggest transgressions are a beer or three at night and minimal exercise but it's not as if I used to be the most active woman around. I am now 26 and grossly overweight and it's fueling my existing (yet managed) depression.

My GP told me about bromocriptine but the neurosurgeon recommended I stay off the meds until such a time comes that I want to fall pregnant. In the meantime, I look pregnant!!

If anyone has any tips or advice, please feel free to tell me!
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Old 08-01-2011, 05:48 AM   #160
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Weight loss is a big trouble as it has so many varieties which can make you confused while dieting but from my side instead of dieting one should concentrate on balanced diet so that you could make big progress in loosing weight without affecting your health.
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Old 08-14-2011, 01:55 PM   #161
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I started coming to 3FC for weight loss support and never thought I would have thought I would find out or realize that I am not alone in this. I found out I had a small nodule on my pituitary gland just this past January(2011). I had been getting depo injections for BC 9 years and stopped getting the injections 3 years ago so I thought the symptoms I had were from the depoprovera (boy am I dumb ). Anyways, I totally feel like crap now and occasionally I'll go through some bouts of depression but lately its terrible. I recently had to buy a dress so I went to a deprtment store to try some on, I saw myself in the mirror and broke down quietly crying. Then not too long ago I noticed the stretched marks on the back of my legs. I used to run everyday after work in the summer heat and in the rain, and in winter cold. I could go 6 to 8 miles. I used to dance. Now I dont have to do anything and excessively sweat. I feel like a pig. I went to Weight Watchers I lost 60 pounds but then 5 months later I gained 30 back while doing Weight Watchers. I also spent hundreds of dollars and Medi Weight Loss I ate what the told me to counted my calories took the supplements and NEVER had any weight loss with them in fact I gained. I THINK since I saw my Primary Care Dr. last week my boy friend may believe me now that I did not intentionally gain this all this weight. I hate the crying every other day and having to buy clothes that are so big. I did tell my Dr. what I was doing to lose weight and asked her some other questions about the other things that are going on me with me and she does NOT yet want to prescribe ANYTHING else to help me since she thinks it has to do with the tumor on my pituitary gland. I did tell her I had not been taking my BROMOCRIPTINE every single day because it makes me SICK to my stomach. I should be on last refill for it right now but nope I am only on the 2nd or 3rd. My Dr. saud at this point with the things that I told her recently started happening she said I am PLAYING WITH FIRE right now.
Anyways to anyabody who read this I am sorry I went for so long.
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Old 08-26-2011, 11:55 AM   #162
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Just started with my dostinex Wednesday. Endo tells me that my problem is not "that" severe, though my levels are approaching 70. In the last year, I have gained about 15lbs, which gives me pause. Even though he insists that my adenoma is not growing. (How can he tell anyway, when he just met me?) At any rate, I will keep you guys posted. I will be on the Dostinex therapy for two months at .05 twice weekly. My husband and I will hold collective breaths while waiting and seeing. Thank you all for the good advice, support, insight, cheerleading, and wisdom. Godsends you all are!
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Old 08-26-2011, 11:57 AM   #163
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Ooops! To everyone in the struggle--Godspeed!
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Old 09-06-2011, 03:06 AM   #164
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If my neurosurgeon had told me that I'd be picking up weight, I'd have started the meds immediately, trust me. But lactation never bothered me and not having a period is awesome, so I thought I'd skip having to take heavy medication as I'm not too fond of that. I'm going for blood test tomorrow to check the level of my prolactin as well as my thyroid levels. I'll update you guys with the numbers once I have them!

I'm in South Africa so I don't know if we have cabergoline? How easy is the weightloss on all these meds?

Quote:
Originally Posted by clang View Post
Why wait to start the meds? It makes no sense to me. Unless you can't handle the side effects but you won't know until you try. I went on and off of them through the years since diagnosis. And my endo said if I was to stay on cabergoline for about 3 years, he thought maybe that the problem would reverse itself and my prolactin level could go back to normal and stay there without drugs. I ended up getting pregnant so I'll have to try again later once I stop breastfeeding but it will be worth the try. Plus the weight loss was easier on the cabergoline. Not sure about bromocriptine though since I was never on that one for long.
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Old 09-08-2011, 07:17 AM   #165
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Default Me too!

Im in a similar situation to all you guys and really interested to hear so many people with a prolactinoma and weight gain issues. I've always had a bit of a weight issue but it got out of control in my late 20s. I was diagnosed with a microadenema prolatinoma in 1997. Thankfully i have had no side effects both to bromocriptine and dostinex and immediately had a period once I started medication. I quickly lost about 10kg without much effort and another 26 through weight watchers once I realised the weight was coming off easily. I fell pregnant in 2007 and again in 2009 and now have a beautiful girl and boy. (i was on bromocriptine while I was trying to conceive each time. i was told this was a safer option only because babies have been conceived on this drug over the last 20 years without any known side effect. Each time I went off medication as soon as I conceived). I have found it almost impossible to lose weight while breastfeeding and only lost weight once I went back on medication after I had my daughter. I recently went back on dostinex and have just noticed my pants are looser without having changed my diet greatly. I am now convinced prolactin and weight are linked. I do have hope now I can finally lose this weight. Thanks girls for sharing your stories!
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