Prolactinoma: Living with a pituitary tumor & how I found out I had a prolactinoma.
HTML-код
- Опубликовано: 27 июн 2018
- Thanks for watching MY story about living with a prolactinoma.
I would love to hear your story as well as your road to recovery. My hope is that this will serve as a beneficial platform to all.
Stop by for more videos!
Insta: @JezzSimone
Snap: JezzSimone
makeup used www.limelifebyalcone.com/jessicacrawford
Thank you for sharing your story. I was diagnosed with prolactinoma too. My prolactin level is at 881. :( I feel like alone and fighting my secret battle but my faith with God is getting more stronger. To everyone who has the same illness, I’m praying for you guys! We will get through this! :)
Thank you for sharing your story. I’ve been living with a prolactinoma for 17 years. It started out at 3mm and has grown to 7mm x 1cm and is wrapped around my right carotid artery in the right cavernous sinus. I tried cabergoline and bromocriptine several times but the side effects were too much to bare and I was taken off of them. The nausea, vertigo, and overall fatigue and sick feeling were bad, but the mental and mood changes were the worst. I had deep depression, anxiety, and even hallucinations at one point. I am likely going to be put back on medication due to the fact the tumor grew recently and am meeting w new drs out of state soon. I haven’t met anyone with this disease in all the years I’ve had it but would love to form a support group to talk about our issues and things that have helped. My headaches are getting to be debilitating, and have been daily for 4 months w no relief from medication. Hope to hear from others out there. Thanks again for your story and kind words of strength. ❤️
I was diagnosed with a prolactinoma in 2018 any side effects you can think of I had them. Nausea, headaches, dizziness, tender/leaking breast, blurred vision, even depression and anxiety. My OBGYN immediately did blood work and my prolactin levels were 236 I had no idea what this meant I was referred to a endocrinologist who was the worst! He didn’t explain the condition to me i still have no idea what any of this is he never talked to me! He orders an MRI and i was waiting on results for months but he never called. He actually forgot to tell me i had the tumor so he just sends the medicine (cab) to my pharmacy. it got my levels down to 65 still very high but coming down so I was excited to see what else he would do would be up my dosage would he recommend anything else but he did not. After a month all of my symptoms came back I called and scheduled an appointment with him he still didn’t tell me anything and he didn’t refill my medicine so I went to my primary doctor and he has helped me so much! He ordered a new MRI and he has referred me to a new endocrinologist which I’m supposed to go see soon I also have an appointment with a neurologist I’m really thinking surgery is an option for me because the medicines aren’t working and I just wanna be done with it all! I’m praying for you and anyone else dealing with this disease. Thank you for sharing your story! ♥️
Hi what meds are you on?
How are you doing now?
My prolactin level is at 67.5 and I found out about my tumor in 2008- when i couldnt get pregnant. Fast forward to now I have three health boys and years of putting my body 2nd. Ive just dealt with the symptoms but now the pressure and vertigo and nausea is bad amongst other symptoms. Today i was prescribed CAB and I am reserved on taking anything for it because I cant keep a health regimen of pill taking. Im horrible at it. Im hopeful that this drug will subside my lactation and increase my dopamine- on top of this im also very very anemic and my ferritin is below normal. I hate feeling alone in this and I too put a smile on my face and act like everything’s great and suffer in silence. Thank you for sharing your story, i truly appreciate your transparency.
My story is similar. Discovered mine after my system went haywire after stopping the pill. After tons of bloodwork and MRI we discovered I had a 6mm prolactinoma. I took both the bromo and the cabergoline (one then the other, don’t remember which was first though). After about a year-year and a half my system was healthy enough to be able to get pregnant. My son is 4 now. I just wanted to share that with anyone on that journey, because I KNOW how hard it is. I remember crying in the endocrinologists office every 6 weeks when my levels weren’t there yet, and every time I took a negative pregnancy test. However after my son was born my prolactinoma symptoms have returned and events in my life have led me to not be financially able to seek treatment for it currently, I hope to have that rectified within the next year but it’s so nice to see a community of people who understand my struggle. Much love to you all.
So glad i found this video. Everything you said is exactly what I’m going through. I’ve never felt so physically, emotionally, and mentally drained from this. Praying for you and i hope everything gets better for you 🙌🏼
Same thing happened to me
I'm on Bromergocriptine I feel so bad
it's so crazy that you just posted this now because I have my neurosurgeon appt tomorrow morning. Thank you so much we should keep in contact.
Thanks for sharing. I know you shouldn't look at a lot of videos before but it's good to have all information. I have my MRI tomorrow. My levels were 800 on my lab. I am trusting God for the best results.
I’m right here with all of you fighting day to day with this and feeling all alone in the world with no one to talk to who understands what I’m going through 😢
When I was 13 I had a blood test and my prolactin came back at 200. I had an mri but it took them a year to tell me I had a tumour. After a year they did another scan and I had a bleed so they started me on carbergoline. It was shrinking the tumour, but I started to get bad side effects. Seizures, and depression. After a few months of the meds I went into a psychiatric ward and they stopped the meds and planned for surgery. Apparently it was a macroadenoma with my levels at 6,000. They took it out. Now at 15 about to take my GCSES, it’s growing back 6 months after surgery. I have no energy. I wish there was more research into this.
Wayne Bell. i am male and have travelled a very semiliar path to you with some variations, but here goes, i have what seems like a long standing health problem for many areas of my body, some as a direct result of being a victim in a road traffic crime inciddent and all the fallout that sticks with you for life, i regularly see specialists who give treatment to me but dont seem to access my medical records before they give me more pills or have me undergo surgery etc often with no positive outcome, but watching your video just now has after seventeen years of my health failing the light has dawned and yes, your right, there is no better specialist ao the subject of my body than i am, and yes i do need to take that truth and start organizing the specialist to meet my needs here and the errors they keep making as they dont seem to deal with me in joined up handwriting, its all fragmented, and remember folks after ten minutes of you putting down the phone after speeking with a health professioanal they have already forgot about you and the next patient is speaking with them. Im gonna draw out a small circle on paper, then enlarge that with a much bigger circle around it, im the one in the small circle, and i will divide the circle up into twelve segments, then write each of my health problems in each segment, then radiate each segment out to become a timeline and write down any up coming appointments with gaps between them, once this is laid out, i will easily be able to see which doctors are trying to tackle a specific problem i have, without them seemingly to have any knowledge off the other doctor and the helpful data that each of them have saved on their data bases, then i will begin to corralate theswe clashes and write down some short to medsium term goals on action planning to begin to join these people up, start to ,make some progress in bringing positive change quickly to my health challenges, Thank you Jessica once again, you can know that this day the lord Blessed me through your commitment to him to never give in, to be hope full for a future and to have a positive mind and approach throughout, May God |Bless you Mightily/
Thank you so much for posting your story. It really helped me💗
Thank you for sharing your story. I’m taking cabergoline considering surgery.
Thanks for sharing your story. I was diagnosed with a prolactinoma 20 yrs ago and just now hearing so many people’s stories and struggled with the same symptoms. I’ve heard a lot of people connecting it to birth control which is interesting.
Thanks for sharing your story, I found out I had it last year, I'm on Cab too on half a tablet a week!v been over aw year hope your ok and get better cc
Anyone have heart palpitations as one of their symptoms?