Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
I diagnosed with 3mm prolactinomia 12 years ago. I have been managing my tumor with meds ,annually Dr appt, and blood work. O thought I had adjusted well. No major complaint. This were my story gets complicated. I have always had very serious headaches. But lately my headaches have gotten worst. I thought about attending my primary care doctor but she would probably refer me to the endocrinologist . My endocrinologist always that the tumor was too small to be causing any symptoms . I decided to make an appointment to see an opthamologist . She ran many test and was very concerned with my vision. I already was legally blind in the right I due to a head injury when I was 3 months old. So I depend on my left eye. Doctor says that now I am losing vision in my good eye. She is referring me to a neurologist. She is very concerned and questioned me why I don't have a neurologist. I don't know why. I guess someone drop the ball. I just have so many questions. Such as what to expect at the neurology appointment. Is the tumor effecting the vision in the good eye ? She told me I have lost peripheral vision in my good eye. I though I had done well with the vision field test. I guess not. I am concern with what will happen next. How did this happen I thought I was doing everything right. My blood work has been fine. What should I expect next?
I don't think this condition ever gets better to be honest. I have had 3 different doctors and I am still not satisfied. No matter how small my tumor gets I continue to have headaches and all the other symptoms. My last MRI showed that the tumor wasnt visible but it has to be because I still suffer from headaches. I know my story did'nt help but every time I read stories that are similiar to mine I cant help but to comment.
Thank you for reading my post and commenting. I just feel so overwhelmed. I am angry at my present Endocrinlogist. I have been with her for almost 6 years which is the longest I have ever been with any Endocrinlogist because I always question there judgement. So I thought I had found a good one. I feel like I am starting this journey all over again. My prayer is that I make good decision and that I find a good neurologist. I pray that maybe things are not as bad as the seem.
Again she couldn't believe it. She said that wasn't possible. Whaaat??? It's my body, and I was right what does she mean that isn't possible. I was right wasn't I? I don't think the Endocrinologists truly understand either the prolactinoma's or how the medication affects our bodies. They think that since their research doensn't show anything we all must be wrong. They are wrong! Unless you live with the prolactinoma or the medication, you won't ever understand.
One thing this sight has proven, we all feel the same things and the medical field has no understanding of what this does to our bodies. I live in an area that there is only one group of endocrinologists so I have no choice for doctors. I just have to deal with the one that I have and she's the best one out of the group.
I too have headaches most of the time, I also deal with migraines and after I take my dostinex I'm exhausted, crabby, or depressed.
This is not an easy road that we're on. I am a pastor and only make it through by the grace of God.
Rosie I pray for wisdom and direction for you along with some encourgement!
PastorT I totally agree with you. Before I was diagnosed I knew something was wrong by the way I felt. Yes, if it's not in "the research" some think it can't exist. I am on Cabergoline now and I see little white pulsating lights at night. Does anyone else have this side effect? And before the meds, when I sleep at night I can feel a vibration or shaking inside my head. Can anyone relate to this?
Rosie, even though my visual field test came back fine, I was still told by the Neuro Eye Doctor to see him every 3 months. I guess they want to make sure there are no changes. From what I understand, if your tumor is pressing on your Optic Chiasm, it can effect your vision, in which case surgery is recommended. I truly wish you all the best. Please let us know what you find out and keep us posted on how you're doing.
OMG, I am so excited to know that someone else has experienced this shaking/vibrating sensation!! Thanks for writing back! Did any of your doctors say what this is?? It's been going on for years when I sleep but lately it's even worse. I saw my Endo yesterday & she's becoming concerned that there may be something else going on (in addition to the tumor) because some of the things I'm describing are not "in-line" with a Prolactinoma. Also, like you, my head feels worse after 3 months on Cabergoline, not better. I attributed that partially to the med but because of the head shaking & metallic taste I've been getting at the back of my throat, she wants me to see a Neurologist. So that's my next step on this journey. Please, no more "bad news," having a tumor inside your skull, or anywhere, Is "bad" enough! :):) At least Prolactinomas are benign! That's good news.
As for the eye doctor I mentioned, yes, he's a Neuro-Opthomologist (not Neurologist) who deals a lot with Prolactinomas & my Endo referred me to him to do a visual fields test. This is pretty standard procedure for people with Prolactinomas. It also establishes a baseline. I'm sorry if your Endo didn't advise this. After hearing your story, I would definitely encourage you to see one as soon as you can.
He said if the tumor was pressing on my Optic Chiasm (which in your case it sounds like it is) then they would recommend surgery. I've been fortunate in that area. Even though my tumor is 1.3cm, the MRI showed that it is not pressing on my Optic Chiasm. He also said that if I notice any visual changes, to contact him ASAP. I do see lots of little white pulsating lights at night when the bedroom is dark. My "regular" eye Dr said that my brain is probably being over stimulated from the medicine & this is what I'm seeing.
Perhaps another Endo who you feel is really listening to you will help also. I know it takes a lot of energy to switch doctors. I had a primary who I felt rushed our visits & wasn't really hearing me. I had classic signs of this tumor & she missed it, even though she's also a hormone specialist & I told her many times that my head hurt (& I've never had a headache in my life). She didn't even suggest an MRI or Endo. So a year went by & my tumor grew larger. Disappointing- YES! But I have to move on & continue to do all I can for myself. I have a different doctor now who I like vey much. Sorry for the rambling!!
If your tumor was 3mm 12 years ago, how often do you get MRI's & has it shrunk at all? You did do everything that you knew to do. I know it's frustrating. I'm a person who's always been very healthy until about 3&1/2 years ago. My hair started falling out, I was very fatigued & every so often I had feelings of what I called " head nausea." Then I was told I have hypothyroidism & in June, 2012 a large tumor! Fun, fun! Ha, ha
It must be very scary having the vision in your good eye being "threatened." I am praying that great vision be restored to you! I wrote in another thread about Dr. Laws at Brigham & Women's Hospital in Boston. He's one of the top Neurosurgeons for Pituitary tumors.You could call his office & explain your visual concerns & if you send all of your info & MRI scans he will take a look at it & give you his opinion. Maybe he's seen cases where smaller tumors have caused vision problems, you never know.
Many Blessings - keep us posted. Sorry for the "mini- novel" guys & gals!!
Also the 'head nausea' and horrible headaches being my worst syptoms. K2021hi you said you went a year without diagnosis and your tumour grew. I went 10years without a diagnosis and my tumour is still small its micro but i'm not sure of its eact size.
According to my endo these tumours do not grow only in the very rare cases. I dont know how much that is true but i thought maybe it would help you.
I think it helps if we all share our experiences its good to know there are others going through the same.
K2012HI to responsed to your questions posted a liitle over a week ago. When I have mentioned such symptoms as the shaking and vibration in my head, my doctor simply dismissed it always stating that my tumor was to small to exhibit any symptoms. Can you believe that I fell for this bull all of these years. I was getting MRIs every 2 years . Then she stopped. Told me that my bloodwork was fine and didn't feel a MRI was neccessay.
As promised I wanted to give a quick update on my current medical appointments.. I just had two very interesting appointments. On Thursday, I met with a neurologist for the very first time. I was very impressed that be did not try to talk over me but instead was a very good listener. The first thing he wanted to do was get a MRI which will be next Friday. I knew that was coming. Because I have been having headaches along with visual changes he was very interesting in the tpes of headaches and where they started. He would like to start me on a preventive headache treatment which would consist of my taking a medication called Topax . After reading the side effects. I really preferr not to take this route. I think I will wait for the resuts from the MRI. The next day went to see the Endocrinlogoist. We discussed how it was possible that I may have a another tumour growing which is know as a Non-Producing Tumor. Which produces no hormones. This tumor may be pressing on my optic chaism. I never thought about a second tumor growing. There is just so much information that I would love to share but I prefer to keep my post short and readable. So please keep me in your prayers on Friday Nov.2, 2012. I will be having my MRI. I will be in the machine for 2 hours at least. This beause I have two areas being scanned the pituitary and the pancreas. I posted a disussion a year ago about a lesion found on my pancreas. We continue to montior it yearly to make sure there is no change. This is just an update to follow my entire story please read the previous post. Please keep me in your prayers.
As promised I wanted to give a quick update on my current medical appointments.. I just had two very interesting appointments. On Thursday, I met with a neurologist for the very first time. I was very impressed that be did not try to talk over me but instead was a very good listener. The first thing he wanted to do was get a MRI which will be next Friday. I knew that was coming. Because I have been having headaches along with visual changes he was very interesting in the tpes of headaches and where they started. He would like to start me on a preventive headache treatment which would consist of my taking a medication called Topax . After reading the side effects. I really preferr not to take this route. I think I will wait for the resuts from the MRI. The next day went to see the Endocrinlogoist. We discussed how it was possible that I may have a another tumour growing which is know as a Non-Producing Tumor. Which produces no hormones. This tumor may be pressing on my optic chaism. I never thought about a second tumor growing. There is just so much information that I would love to share but I prefer to keep my post short and readable. So please keep me in your prayers on Friday Nov.2, 2012. I will be having my MRI. I will be in the machine for 2 hours at least. This beause I have two areas being scanned the pituitary and the pancreas. I posted a disussion a year ago about a lesion found on my pancreas. We continue to montior it yearly to make sure there is no change. This is just an update to follow my entire story please read the previous post. Please keep me in your prayers.
As promised I wanted to give a quick update on my current medical appointments.. I just had two very interesting appointments. On Thursday, I met with a neurologist for the very first time. I was very impressed that be did not try to talk over me but instead was a very good listener. The first thing he wanted to do was get a MRI which will be next Friday. I knew that was coming. Because I have been having headaches along with visual changes he was very interesting in the tpes of headaches and where they started. He would like to start me on a preventive headache treatment which would consist of my taking a medication called Topax . After reading the side effects. I really preferr not to take this route. I think I will wait for the resuts from the MRI. The next day went to see the Endocrinlogoist. We discussed how it was possible that I may have a another tumour growing which is know as a Non-Producing Tumor. Which produces no hormones. This tumor may be pressing on my optic chaism. I never thought about a second tumor growing. There is just so much information that I would love to share but I prefer to keep my post short and readable. So please keep me in your prayers on Friday Nov.2, 2012. I will be having my MRI. I will be in the machine for 2 hours at least. This beause I have two areas being scanned the pituitary and the pancreas. I posted a disussion a year ago about a lesion found on my pancreas. We continue to montior it yearly to make sure there is no change. This is just an update to follow my entire story please read the previous post. Please keep me in your prayers.
The MRI will be the best source of information on your condition and should give some insight as to the nature of your eyesight problems.
Remember, there are a lot of structures in the head...many of which can cause problems of varying degree and severity...so, try not to pidgeonhole yourself into thinking grim thoughts. This is just another day and another wrinkle to your condition...and may have a very simple resolution.