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18 year old with 12 mm prolactinoma
Hello. Definitely new to this kind of thing. I was just recently diagnosed this October with a 12mm prolactinoma that is pressing against my optic nerve (I just went and seen a neuro-ophthalmologist and he said my eyesight is great). I am currently on cabergoline and so far I have seen no changes, although I have only been on it for just over a month. My endocrinologist told me to expect to get my period soon, but didn't specify what soon is. So I'm not completely sure if it is normal for me to not have it yet or not. I haven't gotten my period since June of 2012. I have milk being produced from my breasts frequently. I decided I would join a forum to see if I can get absolutely any information that anyone has that can help me understand what to expect and what is normal to happen. Any information from anyone that has/had this would be wonderful and very much appreciated. It is always great to talk to someone who is going through, or has gone through, this kind of thing instead of just talking to a doctor that hasn't been through it. Thanks for taking your time to read this, if anyone does.
The CDs are not videos - just pics - lots of pics. And yes, they have to keep records for years so they will have them.
I know one major lab allows us to get records on line. Before, I asked to get a copy and signed a paper to get a copy mailed to me when I got the labs done but you had to ask before you did any of the paperwork. Labs vary.
I know one major lab allows us to get records on line. Before, I asked to get a copy and signed a paper to get a copy mailed to me when I got the labs done but you had to ask before you did any of the paperwork. Labs vary.
Sorry to hear that!
I am hoping that I am eligible to get all of my records. I am very curious and quite fascinated with what is going on. And it would be pretty cool to get it online! I haven't heard anything about that though, so I doubt I have it. :( Do you think they would still have the video even though it's been a few months??
And thank you very much, that would be a great help. :)
I am hoping that I am eligible to get all of my records. I am very curious and quite fascinated with what is going on. And it would be pretty cool to get it online! I haven't heard anything about that though, so I doubt I have it. :( Do you think they would still have the video even though it's been a few months??
And thank you very much, that would be a great help. :)
I was off a long time - which is not typical, but I had an infection, and had some other issues. So I am more an example of what does not typically happen rather than the normal.
Depending on your state (it is a state law) most people have the right to their medical records with varying amounts of ease. Oddly, even though it is our tests and our bodies, it can be difficult to get the actual results from some doctors so I typically get the lab to send a copy (major labs, in some states now allow patients to get access online - yeah!) and I get my CT and MRI results straight from medical records from the hospital or the radiology place where I had it done. The CD is available immediately if you ask and wait, or wait 24 hours or so, and you can get the report and all on the CD.
I will try to PM you with some more specific direction to help you a bit.
Depending on your state (it is a state law) most people have the right to their medical records with varying amounts of ease. Oddly, even though it is our tests and our bodies, it can be difficult to get the actual results from some doctors so I typically get the lab to send a copy (major labs, in some states now allow patients to get access online - yeah!) and I get my CT and MRI results straight from medical records from the hospital or the radiology place where I had it done. The CD is available immediately if you ask and wait, or wait 24 hours or so, and you can get the report and all on the CD.
I will try to PM you with some more specific direction to help you a bit.
When you got the surgery how long did you have to be off of work? I go to school and I have a job so a lot of time will not be a great thing, if I even get the surgery (which I think that I should be getting).
My endo looks like the type that doesn't mind questions, but both my neurologist and my neurosurgeon look like they aren't the biggest fan of them.
Vitamins are something that I haven't even thought about at all, thank you. And I am hoping to go to my family doctor either tomorrow or Wednesday to get all of my reports. Will my endo and neurologist even have reports? Or will it just be like my MRI and CT scan and stuff like that? I am curious to know what it is they are thinking or talking about.
And the only links I have read are other people's stories. I honestly have not much idea on how to use this site so I am not completely sure about which links it is that you are talking about.I looked into that little "For general information on Pituitary tumors" thing but it didn't really have much.
My endo looks like the type that doesn't mind questions, but both my neurologist and my neurosurgeon look like they aren't the biggest fan of them.
Vitamins are something that I haven't even thought about at all, thank you. And I am hoping to go to my family doctor either tomorrow or Wednesday to get all of my reports. Will my endo and neurologist even have reports? Or will it just be like my MRI and CT scan and stuff like that? I am curious to know what it is they are thinking or talking about.
And the only links I have read are other people's stories. I honestly have not much idea on how to use this site so I am not completely sure about which links it is that you are talking about.I looked into that little "For general information on Pituitary tumors" thing but it didn't really have much.
Yes, I have had the surgery. They did it through one of my nostrils.
There are pluses and minuses. The meds certainly have side effects, but surgery is not fun, and after you have to replace at least thyroid, maybe other hormones. I always have to monitor - but then I am panhypopit (all or most of my pit hormones are low, in my case all but one I have to replace).
It is a shame that you have to go alone. Even I get stressed at appointments and forget things.
It is hard to judge questions. Some doctors LOVE questions - others rather despise them and think the patient is trying to second guess, using Dr Google and trying to get one up on them... so it pays to prepare, but to gauge how the doctor is reacting to questions.
I would ask about a longer-term treatment plan in regards to what time frame will he/she look for your period to return before changes are made as well as getting your PLR down to a normal level, and are they going to check other hormones and vitamins for overall health for general questions, Make sure to get copies of everything and ask about any abnormal levels. When is the next planned MRI. Ask if you should be sent on to a specialist since you tumor is larger and is near your optic nerves (they should IMHO so the specialist can evaluate you fully and see if meds or surgery is best course).
Have you read up in any of the links?
There are pluses and minuses. The meds certainly have side effects, but surgery is not fun, and after you have to replace at least thyroid, maybe other hormones. I always have to monitor - but then I am panhypopit (all or most of my pit hormones are low, in my case all but one I have to replace).
It is a shame that you have to go alone. Even I get stressed at appointments and forget things.
It is hard to judge questions. Some doctors LOVE questions - others rather despise them and think the patient is trying to second guess, using Dr Google and trying to get one up on them... so it pays to prepare, but to gauge how the doctor is reacting to questions.
I would ask about a longer-term treatment plan in regards to what time frame will he/she look for your period to return before changes are made as well as getting your PLR down to a normal level, and are they going to check other hormones and vitamins for overall health for general questions, Make sure to get copies of everything and ask about any abnormal levels. When is the next planned MRI. Ask if you should be sent on to a specialist since you tumor is larger and is near your optic nerves (they should IMHO so the specialist can evaluate you fully and see if meds or surgery is best course).
Have you read up in any of the links?
I am going for a follow up with my neuro on December 11th and my endo on December 17th. I am hoping that they at least up my dose, because half a pill twice a week is not doing anything that I have noticed. I am assuming that I will be getting more blood work done and hopefully another MRI so that I can see if it even is shrinking or not yet. I would much prefer to have surgery done honestly. Have you been through the surgery? Or know someone personally that has?
The people that you know, do you know how old they were and how severe it was? Like how big the tumor was, some of their symptoms, anything like that?
I haven't heard anything about any other hormones. I will be sure to ask about what else is being affected next time I'm in. I'll bring a notebook or whatever and write down everything that I possibly can and try to get more information. I have been going to all of my appointments alone so having a notebook will definitely help by the looks of it. Are there any questions that I 100% must ask them?
Again, thank you very much. This truly and honestly means a lot to me.
The people that you know, do you know how old they were and how severe it was? Like how big the tumor was, some of their symptoms, anything like that?
I haven't heard anything about any other hormones. I will be sure to ask about what else is being affected next time I'm in. I'll bring a notebook or whatever and write down everything that I possibly can and try to get more information. I have been going to all of my appointments alone so having a notebook will definitely help by the looks of it. Are there any questions that I 100% must ask them?
Again, thank you very much. This truly and honestly means a lot to me.
Age is NOT a factor here so your surgeon is NOT skilled in pituitary - so find another.
A neurologist, typically, knows little about pituitary - you need a pituitary center. A university hospital or larger hospital may have a pituitary center. You may have to travel. There is a difference between an endo and neuro-endo, More school and more specialized training not just a paragraph on each type of tumor.
That level is really high - so your meds should be adjusted up a bit, or your doc has to consider surgery if your levels don't drop. The expert here (that forum is linked to the right as well) will look at your films if you contact him and other docs do too so you can get a referral to a local surgeon.
I know people younger than you that got the surgery - if you need it you need it so if the meds don't work (they have another med to try, have they done that?) but they cannot leave you as you are. It is just not right.
I kinda agree on the early a bit, as you have to let the meds have a chance, but your age is still not a factor.
It depends on where the tumor is pressing but prolactin can often thrown off LH and FSH hence the period issues, and it may also effect estrogen, testosterone etc. People vary. Symptoms vary. It pays to get testing and know what your situation is so your doc treats you.
A neurologist, typically, knows little about pituitary - you need a pituitary center. A university hospital or larger hospital may have a pituitary center. You may have to travel. There is a difference between an endo and neuro-endo, More school and more specialized training not just a paragraph on each type of tumor.
That level is really high - so your meds should be adjusted up a bit, or your doc has to consider surgery if your levels don't drop. The expert here (that forum is linked to the right as well) will look at your films if you contact him and other docs do too so you can get a referral to a local surgeon.
I know people younger than you that got the surgery - if you need it you need it so if the meds don't work (they have another med to try, have they done that?) but they cannot leave you as you are. It is just not right.
I kinda agree on the early a bit, as you have to let the meds have a chance, but your age is still not a factor.
It depends on where the tumor is pressing but prolactin can often thrown off LH and FSH hence the period issues, and it may also effect estrogen, testosterone etc. People vary. Symptoms vary. It pays to get testing and know what your situation is so your doc treats you.
Thanks for responding! :D I have only an endocrinologist not a neuro-endocrinologist (I'm assuming there is a difference) that works just in a hospital. I have also seen a neurologist, a neurosurgeon (surgeon doesn't want to do surgery yet because I am too young and he wants to wait and see if the medication is doing anything because it is too early to just jump right into surgery), and the neuro-ophthalmologist. My prolactin level last I heard was 836 (I know.. Ridiculously high) and I never heard anything about any other levels. What other hormones do you think may be affected?
I have been starting to make a portfolio type thing with everything I have gotten (which is so far only a CT scan report, MRI report, and one of three ultrasound reports) but I am planning to go to my family doctor soon to get copies of absolutely everything, but just worried about if there is a cost or not.
Again, thank you very much for taking your time to read/respond, means a lot! :)
I have been starting to make a portfolio type thing with everything I have gotten (which is so far only a CT scan report, MRI report, and one of three ultrasound reports) but I am planning to go to my family doctor soon to get copies of absolutely everything, but just worried about if there is a cost or not.
Again, thank you very much for taking your time to read/respond, means a lot! :)
Nice name BTW...
Is your doc a neuro-endocrinogist? Working at a pituitary center? Your endo by just saying *expect your period* is not giving you a lot of information sadly - the meds vary in person to person so you may get your period next week or next year. I don't know what your levels are (did they give you a number - always get copies of everything) and you have to get down into the normal ranges. As well, it may have impacted other hormones and were you tested for those hormones?
You have a macro-adenoma. Even though your sight may be fine, it may not stay that way. Your tumor is frankly not placed well. The meds can and should reduce the size of your tumor and reduce your symptoms as well.
Getting copies and knowing what is going on is half the battle - it also will tell you if you have a decent doc or if you have to move on as sadly not every doc can treat pituitary, even some pituitary docs.
I had this tumor as well as another. There are links in the health pages to help as well as feel free to ask more questions - there are a couple of us here that are active.
Is your doc a neuro-endocrinogist? Working at a pituitary center? Your endo by just saying *expect your period* is not giving you a lot of information sadly - the meds vary in person to person so you may get your period next week or next year. I don't know what your levels are (did they give you a number - always get copies of everything) and you have to get down into the normal ranges. As well, it may have impacted other hormones and were you tested for those hormones?
You have a macro-adenoma. Even though your sight may be fine, it may not stay that way. Your tumor is frankly not placed well. The meds can and should reduce the size of your tumor and reduce your symptoms as well.
Getting copies and knowing what is going on is half the battle - it also will tell you if you have a decent doc or if you have to move on as sadly not every doc can treat pituitary, even some pituitary docs.
I had this tumor as well as another. There are links in the health pages to help as well as feel free to ask more questions - there are a couple of us here that are active.
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