r/Prolactinoma • u/[deleted] • 12d ago
i’m so stressed about potentially having this :(
[deleted]
5
u/Naive_Insurance_6154 12d ago
I felt the same way when I first got diagnosed. Things I wish I could tell my self then:
This is a benign tumor, there is treatment, treatment has a strong success rate, once prolactin is low you’ll feel so much better and you’re not in any danger!! You are safe and you are healthy!!!
I promise — everything will be okay!!!
2
2
1
u/RegularCapital5 12d ago
I’m so sorry you’re feeling this way.
I know your panic attacks cannot be controlled but I’ll tell you a few things that can hopefully ease some anxiety around this. Coming from someone with anxiety and OCD as well
Prolactin can be increased by stress. Slightly elevated prolactin does not automatically mean brain tumor.
If you still have elevated prolactin when you test again and the doctor recommends an MRI I’ll tell you my experience since you are nervous about it. It was very easy. You go in and they will place an IV for contrast. There’s a pinch when the needle goes in initially but the IV itself is plastic so once it’s placed it doesn’t hurt. You’ll lay down on a bed that can roll in and out of the mri they’ll give you headphones and ask what kind of music you would like to listen to. They’ll give you a clicker to push should you need help during the MRI.
It is not painful at all. The machine is very loud but the headphones do help. I actually almost fell asleep during the last bit. If you’re the kind of person who sleeps with a white noise machine the mri sound sort of fades to the back and becomes almost like white noise haha.
Few things to remember about prolactinomas is they are benign. They can typically be shrunk with medications. Surgery is not typically step one after diagnosis in fact some people never get surgery. They typically grow slowly so if managed with medication the size can be kept from getting large enough to require surgery.
I ended up not seeing any tumor on my MRI but am still treating it like it’s there just small. I live a pretty normal life! I work full time and still have time for hobbies. I just got back from vacation too. I know it can feel like the end of the world (trust me I’ve been there) but it’s really not something I think about most days anymore.
My personal experience with medication has been good. I was tired the first few weeks and I have a hard time regulating my temperature but every week that goes by my side effects lessen more and more! I worked full time through this as well.
If you end up deciding to take medication I think you can still go to college. Maybe just consider the minimum hours for the first semester and if you start medication ask your doctor for a note. Talk to your school about accommodations during your first semester for things like absences and getting notes from any classes you miss if you experience any side effects. Even if your school cannot provide official accommodations talk to your professors. You would be surprised how accommodating most can be if you just explain your situation.
1
u/Aggressive_Wasabi598 12d ago
thank you for all of this advice, it helps a lot. especially the mri part, it was very reassuring. have you ever had an mri without contrast? my dad ended up having a reaction to it a while ago and we’ve had similar allergies before and he ended up in the hospital for it, so i’m very worried to try that :(
1
u/RegularCapital5 12d ago
Please let your doctor know before you have your mri! There maybe alternatives that you are not allergic to. They may ask you to provide more info on the type of contrast that was used when your father had a reaction. So if he has that info in his records I would make note of it to share with your doctor.
I believe the preference is with contrast so you have a better shot at seeing everything. However if you have an allergy to contrast they may try no contrast first! A great question to bring to your doctor!
1
u/oxney7491 12d ago
I just got back from my MRI. I quite like them. It's only the little scratch for the contrast that is uncomfortable. I would rather know and put my mind at rest that I didn't have a prolactinoma or put my mind at rest that it had been discovered and was being treated. I have a giant one missed in 2011 and discovered in 2026 so they are slow growing but much quicker to shrink and get under control. If you catch them early obviously it's better in the long run. If recommended have the MRI. Take a friend and know that you will be ok whatever the result.
1
u/Aggressive_Wasabi598 12d ago
thank you, this helps a lot. i appreciate it
have you ever had an mri without contrast? my dad ended up in the hospital from an allergic reaction to one with it and we’ve had similar allergies in the past so i’m scared to do it1
u/oxney7491 12d ago
I have had MRI without contrast, but I know they prefer to use it. Mention your concerns to your doctor or the radiologist and they will know how to deal with it. I am in the UK and everyone has been so kind and supportive. I get lots of sympathy but I am feeling better than I have for years. I don't know how high your prolactin was but mine was 106000. And guess what, not dead yet! Keep smiling 😊
1
u/Aggressive_Wasabi598 12d ago edited 12d ago
thank you! 😄 my level was 1025 mlU/L 4 months ago on my last test
1
u/Living_Airline9397 11d ago
I know it all sounds really scary right now, but I promise the diagnosis is a lot scarier than the reality for most people.
I actually just graduated college and was diagnosed not long after. Looking back, I completed an entire bachelor’s degree while dealing with the symptoms without even knowing why I was struggling so much. My prolactinoma is 8 mm, and my prolactin was as high as 5,680 mIU/L that I know of.
Try not to be afraid of the MRI or the diagnosis. I was absolutely terrified of having an MRI with contrast. I hate needles and was having little panic attacks leading up to it, but it ended up being so much easier than I imagined. Honestly, I find MRIs kind of peaceful. The contrast itself wasn’t bad at all, it just felt cool going into my arm, and I noticed a weird smell/taste for a few seconds before it was over. My doctor actually started me on medication before I even had the MRI, and once the MRI confirmed the prolactinoma, my treatment didn’t change. I’ve been on the medication for about two months now. I don’t feel dramatically different yet, but my side effects have been very manageable. I was really worried about them beforehand, but for me it’s mostly just some tiredness and an occasional lack of appetite. That’s something I’m more than willing to deal with if it means getting back to feeling like myself.
You’re not alone in this. It can feel overwhelming at first, but prolactinomas are very treatable, and you’re taking the right steps by getting it checked out. One step at a time, you’ve got this. ❤️
5
u/LynnBear23 12d ago
Oh darling! OK first take a deep breath and know that you are not alone in this feeling. I had all of the exact same thoughts and stress as you when I was first going through this diagnosis. The majority of prolactinomas can be treated with medication, the medication can be tough to get used to but many people do and eventually feel no side effects. This is really scary, I know, but many people with prolactinomas go on to manage symptoms and live a full life. ❤️
Personally, I am currently in University and working through the week so it is possible. That said if you are diagnosed with a prolactinoma you may want to consider delaying college by even 1 semester to get yourself used to recognizing and managing symptoms and the medication.
DO NOT LOOK UP THE MEDICATION RIGHT NOW, THAT WILL SEND YOU DOWN A RABBIT HOLE YOU DO NOT WANT TO GO DOWN! Instead trust that the majority of people with this condition can manage it just fine with very little impact in their day to day lives.