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Dieting with Obstacles Those with special health concerns such as diabetes, fibromyalgia, pregnancy, etc can post here for extra support and help.

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Old 09-04-2015, 05:25 PM   #226
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Update, I've been taking 2 1/2 mg of bromocriptine now, still waiting to cabergoline to become available at my local pharmacy. Does anyone have any info on which med is better, or are the basically the same? Bromo still makes me feel super sick in the morning, as I take it at night right before bed. I just had a check up with my endo at the end of August and found out I am up ANOTHER 10 pounds.. even after being with a personal trainer for 3 months, working my butt off and eating healthy and staying active. When will this ever end?!?!?! I'm having relationship issues too now because I am lacking the self confidence I used to have and I know it really upsets my boyfriend. I know it probably sounds like I am babbling on, but honestly I don't know where else to let go of all of these problems. I'm emotionally exhausted and just wishing this would all end.. on the plus side, my prolactin levels are down to 24 now, my endo says that's almost normal. I just want this damn weight off and to be myself again!
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Old 10-25-2015, 04:47 PM   #227
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Default My prolactin 'adventure'

I thought I would share my experience. Just over a year ago, I stopped taking the birth control pill (had recently gotten married and thought it might be time to get it out of my system). Well, 6 months later I still had not had a period and I had gained 35 lbs despite no change in diet. I was experiencing hot flashes, mood swings, and big time lethargy. My doctor started running tests and finally after a few months and an MRI I was diagnosed with a tumour of the pituitary gland that was causing elevated prolactin.

I started taking bromocriptine 4 months ago. At first I took 1.25 mg at night only and then graduated to taking 1.25 mg in the morning and again at night. During this time I experienced the common side effects - nausea, headaches, dizziness. I found each time my body was adjusting to a new dose it took about 2 weeks before the side effects went away. I have now been taking 2.5 mg of bromocriptine twice per day for the last 2 months, and finally my prolactin levels are in the normal range (as of last week!). I chose to take bromocriptine instead of cabergoline because it's a more established drug and considered safer for women thinking about getting pregnant. It's also more readily available where I live, and cheaper. The first two weeks on the 5mg per day dosage were ****. I felt so nauseas all of the time. But now I don't have any noticeable side effects. For those struggling with side effects my advice is to always take the drug with food, make sure you drink lots of water, and avoid alcohol completely if you can. Even a drink or two seemed to make the side effects much much worse for me - something to do with dopamine I expect. And know that your body will eventually adjust!

Anyway, since I started taking bromocriptine I have lost 18 lbs. I have a lot more to go, and the weight certainly didn't fall off. I have really taken a hard look at my diet and had to be very honest with myself. Sometimes when you have an obstacle making weight loss very difficult it's easy to put all of the blame on that and assume that nothing you do can make a difference. But even if it takes a long time, eventually the little things can add up to a positive change.

I wanted to share that part of my weight loss journey has included doing the Hormone Reset Diet (book by Sara Gottfried). It's essentially an elimination diet that is designed to help 'reset' your hormones by gradually cutting items from your diet that may be working against you and your hormones. This was the first method of eating that helped me see the scale actually move beyond a plateau that I was stuck on for almost 2 months. Maybe something others with prolactin issues would be interested in trying, so I wanted to share.

It's comforting to know that others have experienced this and that I am not the only one!
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Old 12-31-2015, 12:03 PM   #228
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Default Cabergoline Suggested

Hey Dipso, my experience was almost identical to yours!

I had been on birth control for years - but I was advised to skip the placebo weeks to avoid my menstrual cycle altogether (long story about being epileptic) and I truly believe I would have never experienced all of the symptoms of a prolactinoma (galactorrhea, major weight gain, no cycle, etc.) if it hadn't been because of my gynecologist's recommendation (of course there's nothing that can be done about it now!).

I think I will actually get the book you suggested. I haven't started taking the cabergoline medication because I have to have another visit with the endo to discuss how the meds could effect my epilepsy. I am 5'7-5'8 and gained around 30 lbs. to where I'm about 170-175 but I want to stop the weight gain while I can. I am 26 and definitely don't want to have to buy a whole new wardrobe, plus I can see how the weight gain has already kept me from being as active as before with hiking and such. Hopefully this blog will get more traffic to have more up to date information and treatment options.
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Old 01-02-2016, 08:04 PM   #229
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Hi acklablover, good to see that someone still reads this page! I am planning to try the hormone reset diet again to get back on track after the holidays. I hope you do try it and let me know how it goes for you! In the book she shares a lot of the science behind how different types of food act in the body, their impact on your hormones, and how it can cause fat storage especially in the mid-section. I found it very helpful and it's not something doctors really seem to know a lot about usually when I try to ask for weight loss help.

I really wish doctors would explain better about how the birth control pill actually works in the body before prescribing it so readily to teenagers. I started taking it when 17 and had I known what I do now, my decision might have been different!

I'm still plodding away trying to lose the weight. Little by little!
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Old 03-04-2016, 11:55 PM   #230
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Default Weight loss and Prolactinoma

Hello everyone! I found this forum a few months ago but just decided to post today. I was diagnosed with a 5mm microadenoma in June of 2015. I noticed my periods being more irregular than usual and gaining 20 pounds in a 5 month period. Since then, my microadenoma is the same but I'm still struggling with weight loss. I've been unsuccessful thus far but really hope to lose 30-40 pounds this year. However, my periods are nonexistent now (I've suffered with amenorrhea for the past six months now), which is the greatest concern since I want to become pregnant with our second child this year. I've been trying to research weight loss strategies for people with hyperprolactinomas that's how I found this site again.

Has anyone found success with weight loss? I haven't been placed on medicine yet. When I went to my Endo. in August, she recommend I go on birth control since at that time I'd only missed four months of my period and had just gotten on again. Since seeing her last I haven't been on my period again and it's now March (going on 7 months with no period). I'm praying medication and a nutrition plan will help with returning my periods and weight loss. Any suggestions?
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Old 03-17-2016, 01:48 AM   #231
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Default Prolactin adventure

Hello, I too have had ups and downs with my prolactin levels. I was 27 when I was diagnosed, I am now 34. I have had ay least 4 different endocrinologists. There were only 2 that I really liked. I have taken both bromocriptine and cabergoline. I prefer cabergoline because it works for me. I had an endocrinologist in October 2015 suggest taking birth control also. I didn't want to take more hormones just to have a period. My current endocrinologist agrees with me. I will be starting cabergoline again after my levels are checked. When I was taking cabergoline the first time, in 2009, I did experience weight loss that was in the normal range. I have been off all medication for at least 2 years and have gained everything I lost back. I was going to a neurosurgeon for possible surgery, but he didn't seem confident about it after sending me to an ENT and the endo that suggested the birth control. After 2 years of being strung along, I decided to revisit one of the endocrinologists that I like and here we are. I wish everyone here luck, just think about birth control very carefully of you are going to go that route.
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Old 04-16-2016, 01:55 AM   #232
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Default Diagnosed recently

I was recently diagnosed in January of 2016 and it has been a roller coaster. Currently searching for a new endocrinologist that is more educated on prolactinomas. I feel like most doctors think irregular or no menstrual period, headaches, and leaking breasts,are the only symptoms of a prolactinoma and they're not! It's so frustrating that there are so many other symptoms that go unrecognized by these doctors. Fortunately, I've been put on Cabergoline which has brought my prolactin levels down to normal and is shrinking my tumor. However, still no menstrual period and lots of weight gain. I've gained 30lbs! It's frustrating! Also, has anyone else ever questioned the correlation between being on birth control and these tumors? I was on birth control for several years and once I got off all of a sudden I have a tumor. Obviously it's not always the case for everyone but it's a pretty big coincidence for others. I'm going back and forth with wanting to have the surgery to just get rid of it. I'm wondering if the neurosurgeon will even do it now that the tumor is shrinking.
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Old 09-06-2016, 02:27 PM   #233
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Default High prolactin

Hi
I also have been diagnosed with high prolactin. I do not have a tumor but a negligible cyst..?? I also have had a major issue with weight. I've always had a weight issue but the last 2.5 years have been awful. I run, walk, bike use elliptical. To an exhaustive end. All this combined with watching what I eat. I have an app for this purpose 🙄 My periods during this time were mostly regular. Then this past winter happened. No period for 4 months. Went to doctor, then sent to gyn then endocrinologist. My prolactin came down a lot when my stress level went down & I thought yay!! Well now again, no period and the same bloating, engorged breast feeding again.. I never took the cabergoline but it looks like I'll have to start.. When I try to explain to the docs about how much I exercise and Really watch what I eat, I almost feel as if they do not believe me.. It's frustrating. When I saw this site I thought, finally, I'm not crazy! Other people are going through this too!!! Even people that have known me look and say " are you pregnant?" Ugh It is just so depressing. When I tell them that I ran an 8k. I can they think I'm lying! I'm 5'8 and now 200 lbs, my usual weight prior was 175 ish. I exercise more then I ever have in my life! I'm hoping by taking the cabergoline this will help..,
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Old 09-07-2016, 02:31 AM   #234
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Unhappy Prolactinoma and Fat

I too have a prolactinoma (9mm) and have gained a ton of weight especially after I started on bromocriptine. 5'7" weighing 200 (used to be 150). Was wondering if anyone has tried a ketogenic diet for weight loss?

Also side note regarding bromocriptine - they don't want people to take this drug for "long periods of time" (we are talking about 5 yrs plus) since it can weaken the right heart valve. So not only will you have an tumor in your pituitary, but then you will have heart problems.
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Old 09-07-2016, 02:43 AM   #235
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Default Correlation with Birth Control

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Originally Posted by pressi82 View Post
has anyone else ever questioned the correlation between being on birth control and these tumors?
I never took birth control pills, but when I first got married (22 yrs ago) I had the depo-provera shot - which totally screwed my body up. Had a period for 6 months straight, gained weight and was uncontrollably moody - worst time of my life. Anyways I'm pretty sure that is what cause my tumor, but nothing to back it up.
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Old 09-07-2016, 10:52 AM   #236
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In response to some posts. I think that cabergoline is the best meds for high prolactin levels. For you to develop heart problems, you have to be on really high doses, like greater than 1000 mg. Hmm the birth control issue is a good question. The birth control pill may have been masking the problem, it makes you get your period. It control the hormones. But in retrospect did it have some cause for prolactinoma? It really could be some sort of correlation. I myself was not on birth control prior to being diagnosed. My docs were not concerned with my weight gain but it is significant for me���� I'm starting a very low dose of cabergoline 2.5 mg twice weekly. My prolactin has come down due to less stress but still with erratic periods, bloating and engorged breasts. Have a follow up appointment in 6 months but my doc is really good, I can call her whenever I have a question.
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Old 10-16-2016, 03:52 PM   #237
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Default Prolactima / Dr doesn't link weight gain

It's been 5 years since I've been diagnosed with a prolactima. For 2 years I've been on 2.5 mg of cabergaline one day a week. I've seen no weight loss results. Instead I've gained 150 pounds.
I was never a small person. I'm almost 6 ft tall. At my highest weight I was 375
7 years ago I changed my lifestyle and lost 125 pounds. I stopped losing with no reasons why because I was still eating healthy. I was having severe migraine and a scan showed the tumor had developed. 2 years after losing all that weight it started to come back on, now I've gained back the 100 i lost plus 50 more. I am seeing the supposed top specialist in my state but he does not seem sympathetic to my plight. He says the weight gain is not from the tumor. I'm at a complete loss as now am about 410 pounds. My body is miserable and I don't know where to turn for help.
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Old 11-22-2016, 03:12 PM   #238
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Default Depression and other symptoms

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Originally Posted by Marls View Post
Hello everyone. I stumbled across this forum while I was researching today. I am surprised to see so many folks having the same problem! But it is great to see so much support here. I hope I can inspire some hope in those of you that are suffering.

I was diagnosed with a microprolactinoma in 2009, during my Sophomore year of college. I had been experiencing unexplained weight gain despite working out religiously and eating a vegetarian diet, increasingly bad acne, galactorrhea and mood changes that were bordering on serious depression. The weird weight gain was the first symptom to present itself. I have always been a slim person, so gaining 15-20 lbs. in about 2 months was incredibly frustrating and maddening. I thought I must be going crazy at first.

I was prescribed Cabergoline and have been taking 0.5 mg per week for the past 2 years. Almost immediately I felt weirdly optimistic all the time, I don't know if it was a reaction to the dopamine agonist or a placebo effect, but I no longer felt depressed. After about 4-6 months or so I noticed that my body felt 'right' again, I could eat normal amounts and not gain weight.

Cabergoline did not seem to cause me to lose weight directly, instead it stopped the weight gain and allowed me to have control again. I became even more focused on exercising and eating clean, and my body responded normally for the first time since my symptoms. It took me over a year, but I lost all of the weight and then some. I am in better shape than before this whole fiasco.

I responded really well to Cabergoline, experiencing no side effects (except perhaps the strange positive mood boost). My prolactin levels dropped to a normal level, and the adenoma has shrunken a bit on the MRI scans. The galactorrhea stopped quickly, and the acne has gotten better. My endocrinologist is keeping me on the treatment for at least another year or so before seeing if I can maintain low levels without it.

Please don't give up hope, be sure to give any treatment you are on quite a few months to start working. It is slow going, which I know can be difficult, but keep optimistic about making your body right again. I want you all to have the same outcome as myself, and I think it is possible! (I highly recommend doing research so you can truly discuss things with your endocrinologist, I swear they seem more excited/dedicated to help when they see you have a working knowledge of the condition.)

If anyone has any questions or needs any support I would be more than happy to help out.

Hey Maris,

Thank you for sharing. If what has happened for you is possible, I'd consider it a miracle. From questions asked by docs recently, I think I've had an issue with prolactin for about 14 yrs but it was discovered only a month ago. In the meantime, abnormal weight gain has been a side effect that I'd flogged myself over & thought was a side-effect of depression. Rock bottom depression, loss of memory & fatigue have been symptoms that have cost me years. Still struggling with these. While Caberlin has brought down the prolactin levels within a month, none of these symptoms have reversed. To imagine a life without depression, now that would be something .

Maris how long did you suffer from the "opposite of optimism"? Also when you gained weight, was it a pregnancy- like weight...like a crazily bloated tummy and abnormal puffiness in the face?

Thanks,

SR

Last edited by SarahR; 11-22-2016 at 03:14 PM. Reason: Typos
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Old 02-15-2017, 01:40 AM   #239
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Default New to the prolactin world

Hey everyone, In December of 2016 I went to see an endocrinologist to find out why I'm not losing weight after eating healthy for two years. Also my periods being a week late just recently as of last November, when it's always on time. I have two kids and I never use birth control. After years and years of trying and never getting pregnant. I decided to go to a fertility dr. I told her please tell me what's wrong with my body. I lost 40 pounds four years ago eating 1,200 calories a day of what ever I wanted like junk and healthy food. Now I'm eating only healthy and 1,000 calories. I track what I eat on my fitness pal. I got a Fitbit and try to put in 10,000 steps a day and nothing I do is working. This so called dr. Told me I'm healthy and there is nothing wrong with me. It's all in my head. So she says I'll do some blood work on you if that makes you happy but I would suggest you see an endocrinologist. I finally see one and he says the same thing. You are healthy but you are also 40 yrs old. Supposedly he says when you hit in the 40's it becomes much harder to lose weight because your metabolism slows down. He says it just so you don't leave my office feeling like you've accomplished nothing I will do some blood work to see if you ovulate. A week later I get a call saying the reason you are not losing weight and getting pregnant is because your prolactin level came back and it's really high.. you might have a tumor in your pituitary gland so we have to do an MRI, and sometimes the MRI will not even see it. I freaked out and cried because I've never heard of anything like that. I to be honest I didn't even know what a pituitary gland was. Anyway I'm still waiting to have this MRI since first of January because his secretary is slow as **** doing her job. I decided to go see an endocrinologist fertility dr as well. I told her my story. She was amazing. She told me yes once you hit your fortys it does get hard but people that have a prolactinoma have to eat clean all the time. She said stay on track and prescribed me cabergoline and femura to get pregnant because I really want one more child. She says hopefully in three months when I see you again you will tell me you are pregnant and if the other dr doesn't do the MRI call means I will take care of that for you. I depressed because after reading every single story on here that it seems as though this is something I will be dealing with till I die. I'm happy that hopefully on cabergoline I can get pregnant. Mixed feelings and I dont know if I have anymore fight in me to deal with this. Btw I called first dr. And asked them to tell me what my level of prolactin was and they told me 40.5 whatever that means. So I don't know as much as everyone else does about this stuff but I'm hoping it will not be stay with me forever. I do get headaches and sometimes I feel as though I'm going to pass out when walking or driving. No breast leakage and the fertility dr. Was surprised I didn't have that. I started googling and I came across this forum. I really though I got this because I was taking melatonin supplements for two years straight. And I think I also read that it can mess things up in the pituitary gland. Who knows I just dont know how I got this and how long did I have it if I lost forty pounds four years ago so easily. Sorry for rambling on and on but I'm
So confused and I hate to take medicine. I'm thinking if I get pregnant on cabergoline that I might not take this medication anymore if this is something I have to deal with forever. I mean if it doesn't go a away and it only shrinks and some people still don't lose weight than I'd rather just keep eating healthy and see if I can do it without the medicine. Please share your thoughts with me everyone cause I feel hopeless. 😔
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Old 03-27-2017, 07:57 AM   #240
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Default weightloss

I was trying many diets, exercises for weight loss, but I'm kinda lazy :P

2 months ago i found green coffee plus (producer website - igreencoffee.pl) and that really helped me

Now when i'm slim I feel more confident too
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