Pituitary Tumor and medication

Hormones
1

Hi, my name is Keith I was diagnose with a prolactinoma way back I 1999, I initially started on bromocriptine x 2 per day, then when cabergoline came on to the market I started to take that. My endo took me off medication, supposedly for a drug Holliday, three years on and I'm still not on medication, my prolactin levels last time where 680, but they don't treat until they reach 2000, so they say, my GP told me that anything over 300 should be treat. He was prepared to put me back onto cabergoline, I am now seeing a different endo at a different hospital, have had bone density scans, blood tests for both prolactin and vitamin D, and awaiting results,My question is has anyone any idea what true prolactin levels, really are as it would seem it changes from hospital to hospital, forgot to mention I am waiting for an MRI scan to be carried out.

 

2

Hi there,

It's hard for me to compare because it effects men and women so differently. I did a little reach and the average male is saposto between 3-15 for prolactin. Woman is 3-23. So it frightens me a bit that you are not on anything. I was on cabergoline twice. The first time it shrank my tumor down to half the size. I went off of it for 6 months and my tumor grew double in size, biggest it had ever been. So I got on cabergoline again but the side effects were horrid. Dizzy, out of breath and the night that I would take them I would feel high and have crazy dreams. After nearly 10 years just recently I decided to have surgery. That was about 18 weeks ago now. They got 100% of the tumor with a 5% chance for reoccurance. The doctor had a planed that the longer I had it and the older I get the more that the tumor would cause permanent damage to the gland. Looking back, I wish I would have done the surgery years ago. I'm not completely healed yet but it's worth it. I hope that they start helping you more, good luck!

3

Hi, thanks for your reply, sorry it has taken so long to read it. I live in the UK, I'm not sure where you live. Here in the UK, treatment as far as men are concerned, is a bit of a problem, one endocrinologist at one hospital, doesn't treat until prolactin levels are 2000, at another hospital it's anything over 300, my own GP, restarted me on cabagoline, but after five weeks I took myself off the medication, as the side effects where worse than before, at present I do still not take anything. The results of my vitamin d test and my bone density scan came back as normal. Just this week a neurologist sent me for an MRI scan, and I am waiting for the results. It starts to become very annoying and a little confusing  when two endocrinologist have two differing opinions on prolactin levels, but everything I read about a prolactinoma states, that treatment resumes at a level over 300 for males. Once again thanks for you reply. Just to add, it's never been suggested by anyone that I have it removed.

4

I have a prolactinoma from way back in 1989. Been on parlodel (bromocriptine) all that time. Still on it. My levels were never as high as yours. Highest I've ever had was 75. But after taking the Bromo my levels have gone down and are stable at around 15. They told me they like to keep it under 15-20. Have never been told to go off the meds. Don't know why your Dr told you to do that since it can keep going up which it seems like yours did. I hope your new meds help shrink your tumor and get your levels down.

Reenz

5

Hi, thanks for your reply, some years ago, my prolactin level hovered around 50, now it's between 650/800.

i get very frustrated sometimes with my doctors and the  endocrinologists I have seen. At one hospital, I have seen three different endos, one who took me of medication, over three years ago, saying I didn't need it, as they didn't give treatment until levels reach 2000. I've had another believe it or not, say to me, we don't know everything, and another who stated my levels wher elevated, and would I be prepared to restart treatment, the problem was, I never saw the same one twice, my endocrine nurse said in his opinion, I should be taking medication. The whole thing is a farce, I changed to a different hospital, here they gave me, vitamin D tests result ok, I had bone density scans result ok, all of the normal blood tests, which I haven't been given, as yet, this since August this year, still no treatment or explanation as to why, my own GP, looked on google ??? And said that anything over 300, should be treat, he did restart meds, cabergoline, but after five weeks I became so constipated, I had to take myself off them, as I couldn't get an appointment with him. I get the impression from doctors/endocrinologists that a prolactinoma in men is not common, so therefore they don't have a clue, they just guess, that's my opinion. Three years ago, I had blood taken at two different hospitals, some six miles apart, one said my prolactin level was 860, the other said 340 ??? I asked why could hospitals get such a difference in readings, and I'm still waiting for an answer. This year I paid privately to see a neurologist, who at least arranged for an MRI scan to be carried out, the resultant answer, nothing's changed. To be honest I'm debating whether to carry on seeing an endo, simply because I can't get answers from anyone. I did join the pituitary foundation, but another brick wall, as if I ask a question, they direct me back to my endocrinologist, it's just a vicious circle, that really winds me up.

6

I'm so sorry you are not getting any straight answers. I don't know if being a male effects your levels of prolactin where they don't think you have to follow the recommended test levels of not being over 25, I've had this prolactinoma for over 25 years and I had the breast discharge so my Dr did an MRI after blood results showed no cancer but a level of prolactin of 37. Mr Dr put me on parlodel to see if it would shrink the tumor. It did. I'm fortunate that my tumor shrunk and prolactin levels fell to 14. I still take the medication and have no more noticeable symptoms. They test my levels every 6 months and it stays between 12-37. Others I've talked to (all women)with this have told me about their levels at 350, 50, and in the 200s and the Dr had immediately put them on medication. If their levels don't go down or they have other symptoms then he suggests surgery. I was told as long as it doesn't affect my optic nerve then I will just take this tiny pill the rest of my life. Within the last 7-10 yrs have had a problem with excessive facial (only) sweating. I was told it is menopause and or meds but no one knows for sure. I've been wondering if the sweating is being cause by the pituitary tumor. This is my problem now and getting any Dr to say I have facial hyperhidrosis is impossible. It's what I have to battle with the drs now and I'm not quitting. I hope you stay on your Drs and make sure they do something about your levels. They are too high not to be controlled. I've had to be very pushy with Drs and one dr I refused to leave the office until he handed me the blood test orders with the prolactin level request. And that test had come back a little high so he had to increase the dose of meds. It's back down now. Never let a Dr assume he knows everything about you. We are all different and respond differently to treatments and only you know HOW you feel. I hope you get someone to listen and help you. Let us all know.

7

Once again thanks for your reply, I was diagnosed with mine in 1996, but I must have had it years before then, I'd been having test some years before that but every blood test I had came back negative. It wasn't until I spent a full day on a day ward having a full range of tests, including an MRI, did they conclude I did infact have a prolactinoma, at the time my prolactin had a reading of 5000. I think the problem you will have with a GP, they simply do not know enough about this condition, infact I had a lady doctor in my practice tell me that she knew nothing of the condition, nor the drugs that are used to treat it. In my years of going to my own surgery, I have been asked, when do you see your endocrinologist, when I tell them, they just reply, just leave it to them, this is why I feel they don't have a clue.

yesterday I finally became a patient within a different medical practice, the GP that I saw, is to write to a different hospital, to refer me there. What he did say to me that, on reading my notes, He could not see any correspondence between the hospital an the Surgery I had just left. Earlier this year I was contacted by a lady whom lived in Trinidad, who said like yourself she was quite surprised that I had stopped taking medication while my prolactin levels where so high, I was quite suprised to learn from her, over there they start treatment below 300, and that she received an MRI scan every year. When I was first diagnosed I was informed an MRI scan would be carried out every 3 years, but since 1996, I've had about 4, the last one I paid for. It Dosnt concern me that I have a pituitary Tumor I have learned to live with it, but it annoys and frustrates, me the each hospital has it own set of medical procedures concerning prolactin levels and treatments, as for GPs, they don't have a clue, at least mine certainly don't, one private consultants words to me where, it seams as if you haven't had a lot of support, to which I replied I haven't. Hopefully with different GPs and hospital, I may be more successful.

like you I will keep going until I do get answers, and I wish you well in your endeavours to find a solution to the problem you are having.