pituitary macroadenoma with high levels of prolactin

Hi pituitary problem info please and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have any experience with "pituitary macroadenoma with high levels of prolactin", but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it might be more easily spotted.

If you don't get any replies from other members of this group with the same condition as yourself, you could post your question in the ask a nurse section of the online community and one of the cancer specialist nurses will respond within 3 working days. If this is something that you'd like to do clicking on the link I've created will take you straight there.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thank you Latchbrook, I really appreciate your response, and the fact that you did it just to boost my responses.  Thank you so much. From what I understand it is a bit rare, so finding help online has been difficult. But I will definitely fill out my profile with some more info

maybe people with similar if not the same can help?

once again, thank you for the support Latchbrook

Hey, new to this service but thought I could share what I’m facing and see if it’s any different to you. My old tin levels are really high and my symptoms are feeling fatigued, dizzy spells, breast pain, back pain, my wrists and ankles have been hurting with movement but apparently it’s because the prolactin levels are very high and effects the soft tissue on our joints. I’ve been referred to a rheumatology but still waiting an appointment. I’ve recently gotten divorced and my care team is based in Birmingham and have been amazing but now moved back to my home town luton. Just means I’m going back and forth as I’m ready for surgery and don’t wish to change places so late in the process. Are you on any diet plan or any medicines ? 
thanks  

Hi there Sahana, thanks so much for your message. I'd kind of almost given up on this as a resource, not to mention that my problem is caused by a benign tumor or possibly a cyst, so was starting to feel a bit guilty about using this as a resource, but I'd been struggling to find support elsewhere. Do you know why your prolactin levels are so high? I'm not medically trained at all, but my point of reference for treatment is an endocrinologist, not a rheumatologist. I can confirm all of the above at least on sporadic occasions, apart from fatigue, which is pretty much all the time. Can I ask what surgery you are waiting for? I have just been referred to a neurosurgeon, but am currently taking medication that may possibly shrink the tumor/cyst and may mean that surgery is not necessary. I have an appointment this month with an ophthalmologist since the lesion has grown and the only way for it to grow is upwards into my optic nerve, so they're checking that again. Then I have a blood test early feb to check my hormone levels and to see if the meds are working, then I have a second appt early march with the neurosurgeon to see if surgery is necessary or not (crossing fingers). It is a bit overwhelming to be honest. And it all (recent changes in size of the cyst) came a bit out of the blue at the beginning of December, (much later than when I posted my first message), which meant that Christmas and new year kind of sucked.

The medication I am taking is called Dostinex, which is part of a group of meds called Cabergoline (I think)

Diet plan, I don't have.

I mean, if you want to share more about your situation, maybe we can work out of we have a similar diagnosis and if we can help each other out a bit more. Particularly if, as you say, you have a surgery planned. I hope that you are feeling positive about it, and have some good support.

I hope to hear back from you, and wish you all the best!

Hey, I’m so glad you never gave up in trying to seek answers as I have gone through this journey alone and it’s a very lonely and confusing road. I’m glad to help in  any way I can. So I found about this tumour 14 months ago and it’s been non stop mri’s, ct scans, vision field tests and blood work. So my first symptom to even go to the doctors were because I was lactating and I had found out months and months before but was too embarrassed to act upon my discovery. The weight started piling on and I wasn’t eating anything but just drinking loads of water, coffee and fizzy’s and the weight change happened over night and in a few hours couldn’t fit into my usual clothes, also having extreme back pain. A blood test was needed for a full body count. It came back abnormal so something that should be in the range of 300 mine came back as 1,200 so straight away reffered to specialist endro team. The prolactin levels on went higher and higher. The reason for rheumatology referral is due within my blood tests they found inflammation levels high (ana) and I still was complaining with back pain, wrists really hurting so I think it as my new iPhone was too heavy and my hands were adjusting to the size (even though I’m used to big phones but trying to give a reason to all this phantom pain so I think) I mean I’ve been referred but like I said I have separated and forced to move back to my home town which is 86 miles away from Birmingham. I can’t change my drs surgery as I’m due surgery now. 

Okay so reading your message makes me believe that we have different tumours and yours is a cyst, liseion which is different to what I have and that’s why medicine was given to you straight away to reduce the size which I hope it has. Yours is something they can monitor for a long period of time and hopefully won’t need surgery. Possibly in the future if the size does change. 

for me I need the surgery now as my symptoms are growing stronger and this has effected my left eye where the optic nerve has been damaged. There is fear I can wake up one morning and see nothing from that eye. Hopefully I don’t and hope to get this sorted before then. I don’t think surgery is the answer to everything and there is huge risks in doing surgery as there is fear that the hormone they do take out might not ever grow back which means infertility and other issues along the road. I hope this is not the case for me as I am just 31 and really want to start a family. This had really effected my marriage as my husband at the time found this really alarming so for me I felt like this big elephant in the room had suddenly appeared. Things never improved after hearing news like this. I hope the hormone grows at a steady speed after it’s removed but who knows. 

I have a consent pre-opp appointment on 26th and find out more. I can deffo share what’s discussed and about surgery if anyone is interested.

So what prompted your diagnoses and how long has it been for you? Have you seen an improving for yourself since on meds and what’s their long term goals they have shared with you ?

Sorry just realised that I missed out some information of food plan. 

so my diet before was just crap, looking back I don’t think I really ate at all and didn’t really have a good relationship with food and was so obsessed with my figure and looking slim. It’s because I always used to think I was huge so deffo body Dysmorphia going on there and still now but I’m just more relaxed as I can’t control what’s going on now. Like I said I thought I was diabetic and deffo not a tumour in my brain

straight away the topic of food was jumping around in my appointments and they mentioned I had high cholesterol which might be connected ti this tumour. I loved red meat and would always find myself having lamb chops, steak, beef burgers and what not. I would hate chicken all together and avoid just a healthier palate. Since finding out about the cholesterol it kick started me into buying yogurts specifically for losing it and stopped meat completely. Very rarely have it now and focused on nautically produced foods and no takeaways, meals out. 

I think it’s so important to try and have a balance of everything. I got myself a food processor so started with fresh veg, incorporating diary that is good like cheese, yogurts and a shot of actimel. I started to cook more and not skip meals. I’m Asian so rice was a staple part of our food but I didn’t realise how heavy this is on our bodies when having this daily. Started steaming broccoli which is my fave veg and having that with a curry instead of rice. I mean you have to just work around what your currently eating now and how you can adapt it. Its all about small and subtle changes that will give you better outcomes.

ehat else have they directed when you had bloods done as I’m sure a cyst on the pitruitory glands mean there was signs that were happening on other parts of your body but you just didn’t realise at the time 

sorry very long messages but I didn’t want to miss anything and be of help. I know for me I just had to figure it out myself and I felt so isolated and lonely. I don’t want this same experience for anyone else as this has effected my self-asteam 

here for any support if you need

Hey Sahana, there is a lot here for me to unpack, both in terms of my own journey through this and in terms of being there to support you too.

More than anything, I'm so sorry your partner didn't/couldn't support you through this. On top of all the physical complaints, emotional pain like that must be really difficult to deal with. If I can help in any way through this forum, I guess I´m glad I stuck it out!

I think we actually may have the same (or a very similar) problem......I have received a diagnosis of Rathke's cleft cyst or adenoma or prolactinoma. And whatever it is, it is growing up towards my optic nerve and has caused some damage already but luckily no dead nerves as yet. I don't know how exactly they can tell that, but not tell what kind of tumor/growth it is but......Anyway, the medication could help if it is a prolactin producing adenoma, but not for the other two options, so it's a bit of a waiting game at the moment. I've been told I must seek urgent treatment if I experience any changes in my peripheral vision or get extreme headaches, experience vomiting, dizziness or anything else such as that. so I think we may be in quite similar circumstances.

My problems began about 15 years ago, I never lactated, but I lost my period..... as I say I have a lot of stuff to unpack myself about my treatment, how actively I pursued it, and how actively I pursued answers. But it sounds like you are being treated promptly, which is absolutely the best thing to do.

I know the idea of surgery is really worrying, but it's great that you are getting treatment as soon as possible, please let me know how the pre op appointment goes.

I'm going to try to read this again tomorrow and just let this all sink in a bit. And I'll try to write back to you with a bit more info again tomorrow or over the weekend. In the meantime, I'm here if you you need to talk x

Hey hun so sorry for this late reply. I’ve just been trying to deal with everything that’s happening in my life and it’s causing me so much stress and anxiety. I know I needed to give this reply some time so I can be of some help. I think your on the right tracks and I’m happy that so far so good. Just be mindful not to do anything that can strain you. They have advices a take a small dose of lacsatives to help not put any pressure on this tumour and I think it would be best if you do the same. It’s just to ease this growing tumour and we all don’t know what damage can be done if we don’t make Subtle changes. 

it’s funny you say you have had this for 15 years as I think I lost my period when I was 20 so it’s been 11 years for me. Don’t get me wrong I did here and there have a period but it must have been once a year if that. As I was young I never really gave it any thought and knew it was something I should deal with. I went to my go several times and they just gave me the pill to regulate a period but it was cussing me so much headaches and I just stopped myself. I got checked for pcos but still nothing. It’s just when I rapidly gained weight after I turned 29 did they think “oh let’s do a full body blood test” nevertheless I’m grateful it’s been finally picked up and some action is happening. One good thing is once I got married and moved to Birmingham, I quickly found out that the best specialists for neuro is in Birmingham. It’s probably the best thing that could have happened to me out of this marriage. Where are you based if you don’t mind me asking? 

i think making sure you have the best care team is so important. I’m always emailing or calling up and they know I’m an anxious person and with everything going on in my life they have supported me. At first I didn’t understand a thing and once I expressed this is too much for me to handle, they slowed things down and made sure I know what’s happening. 

I’ve had to do a lot of learning and give myself grace. I was so body conscious before and something in me just let myself go. I just couldn’t keep on top of things but now back in my home town where I am relaxing, I’m finally starting to take care of myself. Ofcourse it’s lonely as everyone is happy and have goals, for me I feel lost in all this but now I’m just taking it day by day. I feel stronger as the days are passing but definitely will need to get some counselling started. 

the struggle for me is my go is still based in Birmingham at the moment and I can’t change it to where I am now. I did this before and they would book my appointment but they would also get cancelled as the catchment people will always be first picked. im nor here nor there it feels like stuck in the middle of two worlds. 

tomorrow I plan to contact pals and see how they can help me and what support is available.

I went to here more about your story, have you got support around you? 

hooe the best for you and I will update you on my consent pre opp 

take care

Hi Sahana, how are you? I´m sorry for coming to this late. I have been thinking about you. How did your pre op meeting go? Are you scheduled now for surgery? I have no idea how quickly these things work.

I hope you are moving forwards with confidence in your team, and have reached out by now to those around you, who for sure care about you