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Prolactinoma and weight issues

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Old 01-09-2014, 02:09 PM   #196
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I had a prolactinoma back when I was 21 (now 30) with my prolactin levels in the 300's (no, that's not a typo). I was horribly sick and skyrocketed from 170 to 300lbs (I will admit that my habits were not overly healthy during that time).

After 2 years of medications I was tumor free but have an "empty" space (I forget the term they used) where it was.

Like I said, I don't know if it made my weight gain worse, but I do know how difficult it is to live with a prolactinoma and how hard it is to just get out of bed in the morning.

Positive vibes to all dealing with this.
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Old 01-10-2014, 07:02 PM   #197
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Hi, it's been a couple of months since I last posted, it turns out I have something in my blood called Macroprolactin so my prolactin itself was at the borderline of the normal range, I think around 480 miUL. Anyway the doc still decided to treat me as I had a 4mm tumour of some form. Within a few weeks I had my 1st period in a year.

However I am still gaining weight very quickly, this seems to happening quicker and quicker for the last 3 years especially in the last 6 months. I am now officially obese, my net calorie intake (food-excercise) is anywhere from 900 cals to 1400 cals (4 out of 5 times around 1100 or 1150). However I am still GAINING HALF A POUND PER DAY!!! I dont understand how can possibly happen to gain half a pound you need to eat 1250 cals but I'm not even eating that, and I record generously and I even record things like a glass of squash.
I'm getting a little depressed as I 've gone from just needing to lose 6 pounds to my ideal healthy weight to being 50 pounds from it in 6 months (I've been dieting in the above way most of the time).
I don't know what to do, my endo said that neither the tablets or the high prolactin should be causing my weight gain (unless its in the hundreds if thousands), he wants to test me for thyroid and cortisol in 3 months, but I don't think my sanity will make it until then.

This will be the 5th time I will be tested for thyroid in the last 3 years and each time I come back normal, I know I've been tested for Cortisol recently aswell and it was normal.

I'm really at a loss now, stupid prolactin and tumour!

Last edited by Mash : 01-10-2014 at 07:59 PM.
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Old 01-22-2014, 11:56 AM   #198
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Hey there, everyone. I was dx with the pituitary tumor a little over 3 years ago while they were trying to figure out what caused the sudden onset tinnitus and hearing loss. All of my blood tests tell me that my prolactin, thyroid, etc, are in a normal range. The internist still felt that the tumor was still likely to blame (at least partially) for my weight issues, but did not feel that it needed to be medicated. It is still my sick dream that some doctor will feel the need to treat it some how, and the weight (I eat well, workout daily) will magically disappear overnight.

I can typically lose a few pounds during the first 2 weeks of a new diet plan, but then get stuck. My go to weight loss plan (South Beach) from my pre-tumor years no longer does much past the first 2 weeks anymore, even if I stick to it, count calories, and workout for 30-60 minutes a day. Very depressing.

I'm getting a MRI in a few weeks, and I'm seeing new doctors since I've moved 3 hours away. I'm hoping they can help me. I'm curious about the macroprolactin, and will have do do some research.

Glad to have found this thread...
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Old 04-14-2014, 08:19 PM   #199
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Hi everyone!

I googled "prolactinoma and weight gain" and found this site and thread. I am really surprised doctors don't say prolactinomas can cause weight gain since hormones regulate things like our weight and ability to lose it.

I was diagnosed with a 7mm microprolactinoma last January(2014). I finally had an answer! Around June 2011 I had lost my periods totally. Went to the doctor and she told me not to stress so much. Awesome. I started gaining a bit of weight in July 2011(10 pounds!). I was not amused but I figured I was stressing out because I had not changed my diet, routine or exercise. I slowly went from 115 pounds on my 5'4" medium build frame to 165 pounds within 2 years. I was getting looks and comments about my weight from my husband, classmates, friends, neighbors and family. I was exercising more and eating less. But who would believe me? Results speak for themselves?

I had gone to several different doctors throughout the time period of not having any naturally occuring periods at all and one doc had me on birth control just so my periods would occur. But at the time I couldn't afford birth control so that didn't help for long, plus I didn't feel like it made sense. It was just a bandaid.

Finally, I went to a walk in clinic and explained everything to a fresh faced young doctor but also mentioned that I think I might have Cushings Syndrome. So he sent me for bloodwork. Came back negative. Went to the same clinic, a different fresh faced young doctor and she asked why I was there and I said "I have no periods". So she sent me for bloodwork checking a whole list of hormones. The only one that was out of whack was my prolactin. So I was sent for an MRI.

I honestly think the only reason why I wasn't sent for bloodwork to check my hormones in the first place was because I never had any milk coming out of my breasts, which is what prolactin is supposed to do. I naturally have smaller breasts and they weren't leaking so it never came under my radar. It's hard when the main symptom of something doesn't happen to you, how is anyone supposed to know?

Well, I'm now on cabergoline twice a week since January(2014) and I have my periods back. They aren't like they used to be but I still have tremendous cramps when my periods happen. Never thought I'd be so happy for cramps. Unfortunately my weight has only just recently started dropping, like within the last two weeks. I have 3 boxes of "thin" clothes that I haven't worn for 3 years. I am hoping by this time next year I will be able to wear them again. If I didn't have a pituitary tumor I would expect to lose the weight normally and be able to wear them by the end of the summer this year. I am not getting my hopes up.

Here's to good health ladies!

btw, I also look "pregnant". I think it has something to do with the amount of cortisol or stress or whatever hormones are going on that makes us put more weight on in the middle? It's not a food baby(pizza?), it's hormones!!
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