Have you experienced what I have with my prolactinoma? Please help me

Hormones
1

Hi there, 

I'm 18 years old (female) and have just been recently diagnosed with a macroprolactinoma (Christmas Eve 2014) the tumour measured 40mm (not a typo, 4cm) it's suspected that the tumour has been growing since I was 12 years old – no periods since i was 12. I am taking cabergoline. I feel like a different person, I have had trouble with mood swings, sometimes i get really angry, tearful and I just feel empty, depressed perhaps - since finding out and taking the tablets. I get tired and get bouts of nausea. I am also overweight and it all started when I was about 13 and just got progressively worse. i tried losing the weight about 2 1/2 years ago and was successful, I lost 2 stone but it took me a year! I was exercising and eating really well. I also get constipated since taking the tablets. I just feel that I get  little support (at college and the hospital) everyone wanted to know what was wrong and once I told them they fused for a week for two and now I feel no one cares, like they know my business and they don't care any more. I struggle to concentrate and get my college work done in the time allocated. I also struggle to remember things and the vision in my right eye has been badly affected, everything is so blurry. I know it could be a lot worse and I'm grateful it isn't but its still affecting me and I need help. 

I just want to know other peoples experiences and how you have coped with things. Have you been affected in any of the ways i have?

(sorry for the massive paragraph)

Thank you and best wishes to you all. <em)

 

2

Hi Leanne Mae, I feel for you having been there but with a micro adenoma.  I had 6 years of severe symptoms different to yours as I had already had a hysterectomy and was on HRT.  But when I was referred to an endocrinologist (by a totally different dr) and diagnosed I was so glad and once I started taking cabergoline it was such a relief and my symptoms started dissipating immediately.

Years prior to that I had suffered severe symptoms of haemochromatosis but it took my gp 9 years to diagnose it.  In the meantime a lot of damage had been done to my body.  Haemochromatosis can affect the pituitary gland, and can cause the symptoms you are feeling now.  Ask your dr for an Iron Studies test and ask for a copy of all your test results.

Some people do have problems with cabergoline too, although it seems to be the best that is available.  People do forget about your condition as it does not affect them.  A broken leg or whatever is much more visible.  Even my own siblings and mother don't give my HH a second thought or allow for my inability to be superwoman anymore.  They don't have it so it does not affect them.  If I do mention it, my mother is like it is the first time she has heard of it.  They are all carriers (one gene) too, I was the 'lucky' one who got two genes.

Because HH causes, among many other things, fatty liver and a problem digesting sugars and starches, I had to eliminate them from my eating habits.  Potatoes, bread, root vegetables, corn, everything made with wheat and grains had to go.  Not only did I feel better but the weight disappeared from my middle.  Now a serve of protein with every meal and lots of green vegetables.  Protein snacks where possible, but my cravings gradually disappeared and I usually don't need a snack.

You may need to take cabergoline forever.  I do, because as soon as I reduce the dosage the symptoms come back again.  The excess prolactin makes my oestrogen ineffective, as you discovered with no periods, and puts me into severe menopause even though I take HRT.  So you probably have been suffering menopause all your young life and are still suffering with those symptoms.  Ask your dr to test your oestrogen, and maybe a little supplement might help in the meantime till your levels are fully reduced.  Our bones are weakened because of lack of, or reduced oestrogen, and we end up with osteoporosis.

Usually only those who have been there know what it is like, and there are a lot of us out there.  Good luck and let me know how you go.

3

Also, contact your country's Pituitary Gland assoc, and ask them for advice, and brochures, especially about the oestrogen factor, so you can take it to your dr in case she/he does not believe you.

 

4

Sorry i have taken so long to reply Sheryl. It has been really helpful getting an insight into someone elses life, experiences and conditon. Im sorry to hear about your diagnosis and everything that has come with it, like you said, no one understands... everyone just thinks 'hey, take a tablet and get better, thats all there is to it.'  but that most definatly isnt all there is to it. Im doing ok with the meds, i have noticed changes though, everyone has said i have changed since xmas 14. I have really low eastrogen and i am travelling to liverpool Walton hospital from north wales every 3-4 months, i will be having a bone density test to see how strong they are. I may need to take HRT which is concerning as i am so young and recently seen scares on the news about cancers etc. I am also having MRI scans every 3 months and i am seeing a hormone specialist and a gynecologist.

Thank you for all the advice, about getting my results and how to get advice. 

It really means a lot, all the best for you and your future 

Leanne Mae

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Sorry, ive just proof read my text and found lots of spelling mistakes:

Sorry I have taken so long to reply Sheryl. It has been really helpful getting an insight into someone else life, experiences and condition. Im sorry to hear about your diagnosis and everything that has come with it, like you said, no one understands... Everyone just thinks 'hey, take a tablet and get better, that's all there is to it.'  but that most defiantly isn't all there is to it. Im doing OK with the meds, I have noticed changes though, everyone has said I have changed since xmas 14. I have really low estrogen and I am traveling to Liverpool Walton hospital from north Wales every 3-4 months, I will be having a bone density test to see how strong they are. I may need to take HRT which is concerning as I am so young and recently seen scares on the news about cancers etc. I am also having MRI scans every 3 months and I am seeing a hormone specialist and a gynecologist.

Thank you for all the advice, about getting my results and how to get advice. 

It really means a lot, all the best for you and your future 

6

Hi Leanne Mae, I have been on HRT (bio identical oestrogen) for 26 years.  It has been a life saver for me.  First I was on implants which are the best, the body absorbs oestrogen as it needs it.  They are available in 12 month and 6 month pellets.  My body used them up quicker than the normal time line so I would have to replace the 12 month at 9 months.  This is not unusual.  Then the implant manufacturing company stopped making it and I went on to patches.  Matrix ones are best which means it makes the oestrogen available slowly rather than one hit.  They come in 100, 50 and possibly 25 (mls, I think) sizes.  I hated them, they irritated my skin and because my body used them up quickly, I was forever up and down menopause wise.  And it did not help when I would forget to replace them.  

I would wonder why I would suddenly feel a wave of anxiety or depression, or anger descend on me, then I would realise I had forgotton to replace the patch.  I had to use them for years though until I found a compound chemist who could make up the implant pellets like the originals (just this year).  Yippee!!  The implants do cost though but they are worth it.

You may not have same problems with the patches as you will only be on them temporarily, till your prolactin has reduced enough to allow your own oestrogen to increase sufficiently. 

Do not accept the oral tablets, they are not bio identical.  For every research outcome that says HRT causes this and that, there is other research which claims differently.  A lot of research claiming bad outcomes was found to be flawed.  They tested it on women in their 70s, 10 years after they went through menopause.  Of course, that was going to cause problems.  I found that drs did not do their research properly and would prefer to scare patients off it instead.

I don't know about contraceptive pills anymore but they usually contain oestrogen.  See if there is a bio-identical one.  I just don't like the idea of the oestrogen passing through my liver though which it does in tablet form.  I did use contraceptive pills for many years prior to hysterectomy.  But women with a prolactinoma need extra oestrogen for a lot of things besides bone strength as you know from experience.  And that includes preventing prolapses in the future.

I ended up with one because my body had been starved of oestrogen for 6 years.

I had MRI's every 3 months for a while, now I make sure I have one at least every 12 months.  We have to be assertive to keep them looking after us.  I hope your vision improves when the adenoma shrinks.  Don't worry about everyone else ignoring your symptoms - their turn will come with something!  And they will think, gee, I wish I was more thoughtful and considerate with Leanne Mae.  And you can say, I know just how you feel - I've been there!

Let me know how you go.  All the best

 

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Hi Leanne, I think I just replied to your other post. I, too, was diagnosed with mine at 18. I had symptoms from before I was even a teenager, and had migraines, seizures, visual disturbances, hormonal problems obviously (I lactated since I was about 11 or 12) and period was affected. 

I was living in a state with no family around as I moved for Uni, and it was scary and confusing. I didn't really understand much when I finally got diagnosed with it, and my specialist put me on a very high dose of cabergoline which gave me intense night terrors. I averaged about 4 hours of sleep (in an 8-10hr window broken by constant waking every 30min from horrifying terrors). I responded very well to this, my prolactin dropped quickly and my lactating stopped. I ended up having surgery 2 days before Christmas in 2009 wihch went well and for a year my levels looked great....................... then they weren't great anymore. My prolactinoma came back, and between 2010-2012 I suffered 3 miscarriages (2 first trimester, 1 second), because my body would just reject the pregnancy due to the prolactin. I, by some miracle, decided to go on the pill as it was too upsetting and fell pregnant 2 weeks into my first lot of the pill, and now have a happy and healthy almost 2 year old. My pregnancy was basically like steroids for my tumour though, and after I had my son I needed to get back on the cabergoline. 

My specialist has told me that it seems as though I'm a 'lucky' (**sarcasm**) one whose tumour is likely to always be there, no matter what we do. If it doesn't show on an MRI, it is just too small to be detected, but it'll still be there. I need to be on cabergoline until I'm certain I'm finished having children (now also seeing a cardiologist as long term cabergoline use affects one of the heart valves so I have echocardiograms as well to monitor changes in my heart). 

Being something that I deal with on a day to day basis, it makes it hard as sometimes I forget I even have it, and others it makes me SO ANGRY and so hurt that I will never be free of this. We tried for a long while to fall pregnant again and had no luck, because as soon as I come off cabergoline my prolactin sky rockets and I stop ovulating. These will be things you may need to consider when the time comes for you to have a family. I think if you find a good support group and have 'a person' (mine is my mum), it will really help. 

I hope you feel better soon, and if you feel like no one cares, just know that I do. 

Good luck xx