Prolactinoma Support Group

I now exactly what you mean :o( I'm feeling awful, and also has a microprolactinoma and an underactive thyroid...
I'm gaining weight instead of loosing, so I can't understand that you are loosing weight? Do you have nausea and lack of appetite? I often has, especially in the mornings...:o(
Gitte

I have a hot flash, everyday. That hot flash may last two hours or it may last 13 hours. Everytime, my eyes get glazed over...my face, scalp, and ears turn red and I just burn up.

The hot flash wears me out. The only time I may have a "silent' hotflash is if I've rested all day long and done nothing in the way of exertion.

Regardless of what time the hotflash starts, I get sleepy beyond belief and sometimes nod off at my desk at work. I usually pick up from there some. I have no problem dropping into bed exhausted.

My wife looks at me and asks me if I've been crying...that's how bad I look and how bad I feel every day of my life. I get about 6 hours of useful energy each day...beyond that...I don't fight it anymore.

Here in England the medical professionals do not give seem to give me much information on my condition, you all seem quite knowledgeable on what is going on, I was just told my Prolactin was very high 35000, and I had a Macro Prolactinoma, they did not tell me the size of the tumor or any information on my Thyroid levels, just that I was under-active and put onto Levothyroxin 0.50 once and day, and Cabergoline 1 twice a week., I have to go to see the Endo tomorrow, I shall be asking a few questions, after reading some of the posts from you guys.
Thanks for your help.
Best wishes Linda

Hi Gitte,
No I have a very good appetite, never nauseous, I feel I have to eat to keep my weight up, saying that I enjoy healthy foods, not sweet, fatty type of food. I like a drink too, although on the Cabergoline I find after one or two, I've had enough.
Best wishes Linda

i also have lost weight in the last in the last 6 months thats how i knew something was really off,i have always struggled with my weight have done every diet possible and still was never as thin as i am now.Its strange i dont feel like myself everyone says i look great as in weight wise but i have aged years in my face because i feel so horrific most days.

i saw the Endo, on Wednesday, I had more bloods taken, he measured my Macro Prolacinoma off the scan it measured 2 cm, he was not too concerned as it had not grown into my optic space, the next MRI scan is not until next July, seems a long way off, some days I feel so awful, and other days I have so much energy I think my head will burst because I can't do thing quick enough, does anyone else have these symptoms?
Linda

oh i know this feeling.One day i am that unwell can barley do anything my mind is a mess the next day i have so much energy not long lasting but i cant move or think quick enough it is like a high but it only lasts a couple hours.Funny thing is i cant explain it too anybody it leaves me speechless, but with a huge to do list...Also i have been having these at night 3am cleaning not being able to sleep this has just started before i could have slept for days at a time only to get up for toilet breaks..This is strange no wonder i have trouble explaining it i cant understand it myself.

Hi Lil35,
When I visited the endo, he said these symptoms are nothing to do with the Prolacinoma!! I have headaches, tingling feeling in the side of my face, pressure feeling on the same side of my head, continual congestion down my throat, yet this is nothing to do with the Prolcatinoma, no one can tell me what is the cause!! It is so frustrating
Linda

Linda, what is happening to you is a very complex situation from a hormonal standpoint.

Nobody should be invalidating you in any form, but rather, should be supporting you. The Endocrinologists have a lot of base knowledge, yet, they don't have the intimate knowledge that you have of your body and your condition.

His view of things is medically complex and humanly simplistic.

Anything is possible with a tumor in the brain.

Hi Tigerpaws,
Thanks for that, sometimes I think I'm going mad. I had some bloods taken recently and the Doctor has asked for me to go and see him on Tuesday, so I'm quite worried as to what else has been detected.
It seems everything is going wrong lately.
Best wishes to everyone,
Regards Linda