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Jennehle 
2:26am, September 20, 2009
I must say I am at a time where I am literally baffled at the Endos here in Canada at least in Western Canda. The province I live in we have 1 Endo who in the beginning of this told me I have a prolactinoma 4mm he put me on bromo 1 full pill a day and told me to see him in a year, that this was no big deal. Well needless to say my family Doctor didn't like that answer so she referred me to another endo specialist in the neighboring province. Whilst waiting for my time to go for the 800 km drive they found that my levels actaully went from 59 (origianl diagnoses) to 103 so I was upped to 2 pills of bromo a day... To no avail last blood test showed even a more significant rise in the prolactin but everything else is in the right areas..I have put up with 6 months of feeling absolutely crappy from mood swings, headaches throbbing, anxiety, bone and muscle stiffness (arthritis like) kidney constantly swelling up for no apparent reason, nevermind the sporadic flows that i do or do not get, breast that still discharge. oh i could go on and on. Needless to say last week I travelled 800 kms to see a suppossed pitituary specialist...what a joke that was. Another endo telling me that anything going on as pre mentioned above has absolutely Nothing to do with the tumor! She put me on caberogline, which at the moment is out of my reach as it is very expensive here. The bromo was stopped immediately by her withthe idea that it may have done more harm than good. She couldn't figure out why I was sent to her. Though she did think that it was strange that my levels continued to rise. I am being scheduled for another MRI, other than that I felt very let down at her flippant attitude towards this tumor. She laughed when I mentioned surgery and was told they only take them out when they are more than 1 cm big..That doesn't make any sense to me as anything that I have read states the bigger it is when you take itout the more problems you will have. I am just baffled. I feel very let down, and now am dealing with adverse affects of the bromo coming out of my system with nothing to replace it at the moment. I s this really no big deal.If so why have I been going thru all this for years from mysterious hypothyroidism ( had it for 2 years was on synthroid then walla all of a sudden it wasn't a problem anymore) like how does this stuff just go away. I was told it was associated with the tumor I was told the almost 90 lbs weight gain AFTER i had my child my when this tumor may have started like 15 years ago...Nope that was dis-spelled quickly by the endo. I just don't know anymore. I am fighting depresssion and raging outbursts. This has taken it's toll on my family life. My realtionship of 12 years has gone down the tubes because he just can't handle me, my 15 year old daughter doesn't even want to be around me. So much on my plate and this stupid prolactinoma where are my answers???The endo also called this website "blogging" and that I should stay off of here as it is very misleading...She also said the mayoclinic website (where I came across good info on this) wasn't the best source of info. She basically laughed this whole thing off and told me no big deal. Honestly I am baffled. I am venting because I feel that this site and the people on here have been more helpful to me than any Doctor. From here I just don't know where to go with this...
Comments
Have you checked out www.pituitary.org
Apple123
Me again,
You need to get with your family doctor and take care of some of these symptoms even if we do not know what is causing it. Have you checked your progrestrone? I just started on the cream 14 days a month helped me a lot with the mood swings and I am sleeping better. Which helps with everything else. Also see if they will start you on some antidepressants. I had to go on one for short period in the past and they do help calm you so you can find the real problem.
Hope things get better.
Rae
Apple123
they say all my other levels/hormones are fine. I was to understand that all of this was telated to the tumor and the disruptions that go along with it. Seriously I am going out of mind over this. But I do Thank You for you support and insights. I will mention to my family dr when I see her next week (she seems to be the only one that has an idea of whats going on)
Jennehle
Well I haven't been here for a bit, unfortunatley looking at the computer screen makes me dizzy lol. Anyways, I have been on the cabergoline for 4 months and it has dropped my prolactin to what they say is a normal level, but in the midst of achieving this my Estrogen has literally bottomed out. I am waiting to hear what the next course of action is as this is exhausting already. I guess in saying that it is par for the course with the estrogen bottoming out as well as a few other things to add onto the "plate" already. Oh well chin up sleep lots and hope they come up with some answers or new med to add into the mix : ) I am waiting for my MRI, but the waiting lists here a crazey long from that isotope shortage.
Jennehle