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Brain/Pituitary Tumors Community
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Avatar universal

medication for hyprolactomenia

My pituatry gland produces too much prolactin and i have been taking Cabergoline for over a year now, i have always had mental health issues, panic attacks argraphobia, ocd and anxiety but since i have been taking the medication i have become depressed and have noticed other behaviours i didn't have before. Does anyone else take this medication and i wonder could it be making me worse. I also suffer from extreme tiredness and sometimes dizziness with it, i was allergic to the bromcriptene not sure how to spell it the other alternative to Cabergoline and they reduced the Cabergoline to once a week because of the tiredness. I thought medication side effects wore of the more you took the medication, i just wondered did anyone else ever experience this.
15 Responses
Avatar universal
COMMUNITY LEADER
Alas, the pituitary tumor has the same symtoms - so I would ask to be tested very carefully to make sure that your treatment is appropriate in dosage as well that you do not have any other hormonal issues going on.

I had a prolactinoma, and then with it, I also had a second tumor, which is not usual at all - and did not show up on the MRIs for 12 years - Cushing's disease. Cushing's can also raise prolactin. So can thyroid issues.

Is your endo a neuro-endo and were all your hormones vetted thoroughly at time of diagnosis and are they still being monitored now - not just PRL but a lot of them? What does your MRI scan say as far as reduction in size of the lesion, and how are you reacting to the med as far as a reduction in PRL? Sad to say, if the meds are not working, then surgery may be your next option but I would like to think that you may need another opinion as perhaps other hormones are off and you need other hormonal support in addition to just dostinex.
Avatar universal
I was put on the medication last April and the levels were normal at christmas thay won't be tested again until this December, i'm not sure what other hormones he tested. The first scan showed no tumor but the levels kept rising so they thought it was so small it didn't show up, i was supposed to have a second one but panicked and wouldn't lie down to get it done, he said if the levels are controlled by the medication then its ok.
I have made an appointment with my GP to discuss this as the endo specialist works in  the city hospital and he said if i had any problems i should discuss it with my GP first who will contact him. I was telling my GP of constantly feeling weak and tired and he said it could be a result of the medication but that its important that i take them anyway.
I know my thyroid was tested and it was ok my GP done alot of blood tests a few months ago to see if anything else was causing the tiredness but they were all normal.
I know depression can cause tiredness so i'm not sure what is happening, am i depressed just because or has the medication caused the depression.
Thanks for replying.
Avatar universal
COMMUNITY LEADER
Get a copy of what was tested. Get a copy from your doctor of from the lab. Prolactin is rather tricky even though the docs tend to think it is simple. Make sure you had a lot of tests - thyroid, pituitary and a lot of general tests.

The depression you have, if not for a reason in your life, could be a symptom of hormonal imbalance - other hormones.

GPs are not that suited to treat hormones - heck, most endos cannot do it well... sad.

Was your MRI scan done properly? To do a pituitary scan, it has to be done *dynamic* which is that it is done with and without contrast, and when the contrast is given, you are in the machine and images record the uptake of the contrast. That method shows up smaller tumors. Unless your doctor orders the scan correctly and/or the MRI place does not do a lot of pituitary scans and did not do the scan right, it may not have been done right.

Before the MRI, often then can give you an ativan or something to relax you so the MRI is not traumatic. If the doctor knows you are bad in the machine, which is pretty common, why he does not give you a pill is strange. Just get a pill and someone to drive you.

If you read the side effects of dostinex, you will find that depression is not listed.
Avatar universal
I wonder was i going to be depressed anyway, my life is stressful i have six children and my eldest who is 17 is pregnant. I have argraphobia and panic attacks for 16 yrs now so that can also cause depression. I have a therapist who thinks the depression is stress related but i just wondered could it be the medication.
I know the GP knows nothing about it but the endo works in the city and he probably won't see me until my appointment in December, i rang him last year when i started the medication to tell him it caused my anxiety to rise he said no it wouldn't that it was me who was anxious.
The tiredness could be just caused by the depression which has gotten worse lately.
I wonder if i stopped the medication would i feel better or worse i know i didn't feel great before i started it either.
It was a ct scan i got and that was in 2004 then they left it a few years to see if the level would drop but by 2006 they hadn't so they started me on the dostinex which was fine apart from tiredness, dizziness and nausea after about 6 weeks i got pregnant and stopped them. Then i started them again in 2007 and was on them for 6 months and i got pregnant again. I was put back on them in April last year so this has been the longest i've been on them. I noticed a rise in sexual drive before it was non existant and my periods are normal so at least they work. I used to take 2 tablets a week but they reduced it to 1 a week to reduce the tiredness and the headaches. Do the symptoms not normally wear of the longer you take them?
I wonder if i stopped them and i was less depressed i would know it was the medication but then the other side of that would be that maybe i am depressed because my hormones are working normally where as with the high prolaction all my hormones were supressed so nothing was working right.
I have rambled on too much sorry about that. Thanks for all the information.
I will start with my GP and get her to contact my endo and ask him about my symptoms. Thanks again
Avatar universal
COMMUNITY LEADER
CTs cannot, in general, pick up a pituitary tumor - it would have to be huge. MRIs are used and even then the chances are increased only by doing it properly.

Yes, side effects are typically worse in the beginning and then decrease. Loss of libido is pretty typical. SIde effects are usually minimized by working up to the dose - so the one pill should not be causing you so much problem. It is a bit odd too that you are fertile - most women in your situation have problems in that area.

Have you had a thorough endo exam and good testing - it may be other hormones are not working. The CMP does not work to pick up hardly anything.
Avatar universal
The high prolactin levels stopped my periods and i didn't get pregnant for three years i was on dostinex 6 weeks when i got pregnant it dropped the levels straight away.
I sometimes even just take half a tablet and as long as i continue to have periods then i know my levels are down.
I had blood done a few months ago and my thyroid tested and everything was normal so they put it down to mental health problems which have just got worse as time went .
In a way i hoped it was the medication so that it wouldn't be my mental health. I was talking my GP yesterday and he said the medication could cause some tiredness and stuff but he thinks i am also depressed which doesn't help.
Thanks for your help.
Avatar universal
COMMUNITY LEADER
What thyroid did they check? Did they check any other pituitary hormones?
Avatar universal
I'm not sure they just done alot of different blood tests for an underactive thyroid or an overactive one but they were ok. I won't see the specialist until December again so i'm not sure if i can find out or not, but i am meeting with my GP on Friday to talk about it more. I hope she knows something about it.
Avatar universal
COMMUNITY LEADER
I have found in my experience that *ok* is not a complete enough response. Get actual tests, results and ranges. I have actually found that I was not *ok* when I got that - that ranges were old (TSH ranges changed years ago), that testing was incomplete, or that I should have been at the other end of the range.

A range is a range - but there are places you should be, especially in thyroid. Not knowing if you were tested for other pituitary hormones is rather sad - can you get a copy from the lab?
Avatar universal
I don't think so its hard to get information from my GP, and i wouldn't know how to go about accessing information from the lab, i will ask my doctor when i see her on Friday if she can find out what other hormones were tested, she is quite good so maybe she can help.
I probably do need to find out more from them i find the endo very hard to talk to and even harder to get an appointment, once a year he see's me, i don't feel thats enough. When i said to him about the side effects he was very dismissive he was like oh they are very easy to tolerate and you should only get nausea or a headache, i mentioned triedness and other stuff but he said no. I talk with my doctor and take it from there. Thanks again
Avatar universal
COMMUNITY LEADER
Some labs you can call their customer service, some you have to fill out a short form. Next time you have a draw, ask for a copy to be sent to you and most times it happens (never perfect, sigh)...
Ah, an endummy... he knows all but nothing... listens to no one.
Avatar universal
Yeah, i will do that maybe if i ask i will get the results, i only found out the prolactin levels results because they gave me a copy of them to take with me to see the specialist.
I just took half a tablet last week and i was less tired and less sick, if i still get my periods on the half a tablet a week then i will know the medication is still working. When i was taking the two tablets a week the side effects were awful everytime i sat down i nearly feel asleep. What medication do you take? I see from your profile you have alot of problems.
You mentioned Addison's disease my baby is called Addison, my mum went mad because my cousin has Addison's disease but i never knew that and she said you can't call him that, but i did anyway, my other child is Adam and Addison means son of Adam.
Avatar universal
COMMUNITY LEADER
I take a lot of medications - I replace all hormones but one - and may lose that one next.  I am now panhypopituitary.  Some of the meds are pills, some are patches, some gels, some injections. The last one may be a pill or nose spray.  

Your children's name's are nice - no one thinks of the disease now with Addison, they think of the actress!
Avatar universal
I am lucky in comparision to the amount of medication you have to take, i took just half a tablet this last two weeks but i'm still exhausted, depressed and anxious so maybe its not the medication making me feel so bad. The half a tablet seems to work ok so far. Thanks for all your help the web site was really useful i found lots of people who feel the same way i do it was such a relief and i am lucky in terms of that i was able to have children the medication worked so well. I still intend to speak to my gp about the medication and see what she thinks and she can let the endo know how i feel, but i know i'll still have to take the medication no matter what. Thanks again
Avatar universal
COMMUNITY LEADER
Yes, you should, in most cases, have to take the med for the rest of your life to control the growth of the tumor.

There are a few of us that take meds like me - glad you are not one of them.
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