What to choose?

I went to a neuro-endo at Johns Hopkins this morning, and the doctor told me to go on Cabergoline. I would like to know from anyone who has used Bromocriptine and Cabergoline.

[rumpled]

I am assuming you have a lesion that would respond to the medication.

Most lesions respond and it is a good first medication to try. When I had my prolactinoma, it was not around my only option was bromo. They both have side effects and everyone is different in how they feel on it. So take it easy. The side effects can and should lessen over time. The doc should monitor to make sure the tumor is indeed shrinking and increase and decrease the dose accordingly.

Hopefully you will do well on the meds and avoid surgery!

[blowup2011]

Thanks, rumpled. Yesterday night, I started with 1/2 tb cabergoline. I need to take it twice in a week, and I'm confused how to take it as there are odd number of days in a week.

[rumpled]

Talk to your pharmacist or doc and see if you have to change weekly to keep so many days apart.

I set my meds out in one of those 7 day a week things - so it may be that you can do it the same two days a week (e.g. Tues and Friday) or change - in which case one or two of those pill cases can help keep you on track.

[Tiff2323]

Cabergoline is awesome for prolactinomas.  I took 1 pill twice a week for 3 months.  I had a repeat MRI and found that it shrunk my tumor 50%.  It also brought my prolactin down from 1000 to 18.  I took the pills right before bed to minimize any possible side effects.  The only thing I've experience on the medication is hand and feet swelling and stiff joints which my Dr says is not very common.  I am trying 1/2 a pill twice a week now to see if it helps with the stiffness or swelling.  I highly recommend Cabergoline- expecially before signing up for surgery! It's worth a shot...

[blowup2011]

Thank you, rumpled and Tiff2323. I'm taking Cabergoline twice a week since I posted here, and I had lab work last saturday for Prolactin. My doctor sent an e-mail yesterday evening saying that my latest prolactin levels are 6.1 and I responded to the medication excellently and continue the current dosage.

My question is how long it will take to get periods or how low should be the prolactin levels in order to get a period.

[rumpled]

People can vary. It may be soon and it may take a while. It has only been a short while so let your body adjust a bit. If you have not had one in about 3 months though, I would advise your endo and get further testing. There can be concurrent issues for instance I had a prolactinoma, Cushing's and several gyne issues like PCOS and endometriosis that impacted my periods as well.

[Tiff2323]

That is great that you have responded well to the Cabergoline!  What was your original prolactin level? 6.1 is great!  As far as your period returning- it could take a while.  I have had "normal" prolactin levels since August and I still have not had them return. As much as I enjoy not having a period- I am seeing a fertility specialist now and will likely try Clomid to try to stimulate ovulations.  Are you wanting to try for a baby soon?

[Tiff2323]

Also, as far as how low your prolactin level needs to be for periods- the normal range is 3 - 29, so your prolactin level is already low enough to get a period.  Unfortunately, the tumor itself can cause "communication" problems between your pituitary and ovaries.  Since your pituitary tells your ovaries when to ovulate, the tumor can disrupt that event.    I have had blood work to check all other hormone levels and nothing is really off so that is what my DR expects is happening in my case.  Have you had all other hormones checked?  

[blowup2011]

Ladies, thanks much for your information. After using the bathroom this morning, I wiped myself and noticed blood and I hope this continues and becomes my first period after almost an year of period less.
Here are my prolactin levels in 2/13/12: 67.4, 9/15: 100.2, and in November:134.4. All my female hormones and Cortisol were salivary tests and my Progesterone was 0.4 as of a Postmenopausal woman so I was kept on Progesterone cream but I used it for 6 weeks in last March and April.
Yes, I'm trying for a baby and discussed with my neuro-endo about this during my first appointment and he told me not to get pregnant until I have 2 periods. Also, he said that Cabergoline is not the best choice for women trying to get pregnant and if I get pregnant while on it I need to inform him as soon as I know.

[blowup2011]

@Tiff how did you know that you are not ovulating? Did you use any tools at home? What medication you are using for regulating prolactin levels?

[Tiff2323]

Well typically when you don't get a period it's because you aren't ovulating and they also did an untrasound to look at the uterus lining- it was very thin which usually indicates no ovulation.  I haven't taken any home ovulation tests.  I'm still taking Cabergoline twice a week but was also told to stop when/if I get pregnant.  Good luck to you- hope your post above means you got your cycle back!

[blowup2011]

I got a full blown period on 1/26 and on 2/22 but nothing this month yet. I'm feeling sick and feel like I got hit by a truck so I contacted my endo and he told me to reduce the dosage two weeks back. I'm wondering if that's is the cause for not getting my period. My BP is low, I'm always feeling cold, I'm weak all over, I usually workout 5 times a week but this week I went to the gym on Friday but came back home as I was feeling weak/sick all over. Saturday, I felt little bit ok but I'm feeling really sick today. I became really slow physically and mentally. Did anyone experience this on Cabergoline? I know it's a dopamine agonist but I don't know if I can continue this medication if I feel like this all the time.

[rumpled]

Have they done some blood work - what are your levels? How about your thyroid? Thyroid can be a culprit as well - did you get a copy of your tests pre-medicine? Was it more than TSH and T4? Thyroid issues can mimic prolactin issues, and your tumor could be something else (I had two tumors, for instance). What other hormones were checked? You can also just be getting sick?

You may need to change dosing, how you take it (with food?) and perhaps lower doses more often etc - a pharmacist is also a great resource on questions.

[JustB_UK]

Hope you don't mind me making a comment directly to you but after using the internet to find out info on high prolactin levels I came upon this site and a lot of the info I've learnt has come from your replies :-) Our son was told today (btw we live in the UK) that his Prolactin level is 480 and his testosterone is low.  He'd originally been referred for a breast lump. On the same day he also saw a Neurologist for headaches and eye pain. He's now going to have a CAT scan and also an MRI scan. Once I heard they were doing an MRI scan to do with his hormone levels I knew it was probably going to be something to do with his Pituitary gland, as when I was 25 due to being unable to fall pregnant, tests showed high level of Prolactin and they gave me a brain scan. .I was put on Bromocriptine and remember being sick when I first took it ..soon realised it shouldn't be taken on any empty stomach! I don't recall any other adverse effects.  I became pregnant quite quickly, stopped the tablets and have never taken any more or been checked to see what my prolactin level is.  So, after  reading all your helpful advice I'm now wondering if my complete lack of libido has been due to a prolactin problem ?? And all this to find out about my sons problem! Oh. another thing, I was told that I wasn't ovulating due to the high prolactin level, which may have been caused by the contraceptive pill I'd taken (In those days it was Ovran). The strange thing was I still had periods.. albeit they were usually 30-40 day cycles. I've learnt a lot tonight..not just for my son but also for myself!

[rumpled]

Is he going for a brain CT? If so, that is ... well, not, IMHO, necessary to my layman read. Most tumors show up better with an MRI and a pituitary tumor will not show up with a CT at all - so the CT (which shows up bony and harder structures better) is just not advised. The MRI is better on softer tissues and will show up the smaller pituitary - especially if they do a pituitary MRI.

It does sound like sadly, yes, you had an un- or under-diagnosed hormone issue. Prolactin can be messed up by so many things like thyroid and even other pituitary hormones so it does not have to be that type of tumor so it really takes a lot of investigation. Sadly, many docs don't take the time. And if you really had the tumor, you should have been on the meds forever - so it may have been thyroid? In any case, I would get yourself checked out as well.

I had my period with my pituitary issue - but my cycles were spread and my period was really long. So I would be every 60 days (from the time I was 14) and it would last from 8 to 45 days! Needless to say I wanted a hysterectomy  from the very beginning and I asked every year for xmas and my birthday - and when I finally got it, the doc apologized as they waited to long and he could finally see the pain I was in (why, did they think I was lying about that too??? The Dr House training lives!). But my point is that symptoms vary a LOT - so what may be *classic* may not happen - I certainly missed a lot of classic symptoms but I certainly had issues!

Get whatever copies you can - and ask questions.

[JustB_UK]

Hi, thanks for your rely. The reason he's having the CT scan is via the Neuro dept.. trying to find out about his headaches but I as he's now been diagnosed with high Prolactin levels I'm erring on thinking they'll  find a growth (after he's had the MRI which the Breast Clinic have asked for..they've also said they're referring him for an Urgent appt with an  Endocrinologist)   I think he's just thankful that he's being thoroughly checked out!  He's had a lot of niggly symptoms over the last couple of years. ie general tiredness, moodiness, sleep apnea, snoring and recently bad headaches and eye pain, just on one side (and low libido but he's only just confessed that one to me) I  must admit Pit problem didn't cross my mind until he mentioned the scan and now having looked up symptoms it seems to slot into space!
With regards to me I think I'll be asking for a prolactin and thyroid blood test, just to see.  I said to my husband, I'd never thought about seeing a Dr about my sex drive.. just thought it was something I had to live with!

[rumpled]

Yes - so many things happen to us that are more subtle and who thinks they are symptoms. It can be hair, libido, fatigue, even how you socialize!

I hope he gets a good pituitary MRI - dynamic (with and without contrast, images taken while contrast is given) for the best chance of showing smaller lesions.

I hope the doc goes further than just a FULL PANEL of thyroid and prolactin. If the doc just does TSH and t4 - they won't find a thing.