My prolactinoma has grown :-/

[Kirsten]

Been diagnosed with a pituitary gland tumor ten years ago. Meanwhile, I know it's an active prolactinoma. Since my prolactin levels were recently rising, I had an MRI yesterday and as it turned out, the tumor has grown. So far, I don't know what that means for me, but I'll see my endocrinologist next month. In case she'll suggest medication, I'll decline it. Not only that the side effects are nausea and vomiting (which would be the ultimate hell for me, being emetophobic), there's also the risk of developing a psychosis, and the very thought of that scares me to death. I think I would rather have it surgically removed, and I hope my doctors agree with me.

Also, I wonder to which degree the prolactinoma is responsible for my various health issues. After all, I'm also dealing with Hashimoto's, and both of it are affecting the entire hormonal system big time. I'm so very very tired of all this.

Off to physio therapy now (yes, my spine is another huge issue!), I'll write more later...

[Karen]

I have a friend who had a pituitary tumor removed when she was a teenager, and was basically fine, just had to take a pill every day afterwards, but was able to lead a normal life. Hopefully they can help you!

[Randi]

Oh Kirsten, I hope you can have it surgically removed. Sending my best wishes! :love:

[Kirsten]

Thank you, Karen and Randi.
Yes, I hope surgery would be an option, but I sure hope I won't have to take those meds for the rest of my life (due to the mentioned side effects)!

And then there are still these plans re. a spine surgery, supporting the spine will metal rods. This is something I also fear. What if I cannot move afterwards? What if I can no longer take pictures because I cannot bend my back?

There are just so too many issues to deal with; honestly, I don't know what I have done to deserve all this. and sometimes I wonder if it's really worth fighting for. For what? I'm all alone in this world, and always will be. :(

[happylabs]

That doesn't sound like any fun at all. I have a similar thing with the parathyroid and possible removal of that at some point.

Hope it works out for you some way or another.

[Kirsten]

That doesn't sound like any fun at all. I have a similar thing with the parathyroid and possible removal of that at some point.


I'm so sorry to hear this! ( What kind of problem does this condition cause? This hormonal stuff is so tricky! :(

[Catty1]

Kirsten, if you have the pituitary surgically removed, the pill will just replace the hormone it produces. It's not like the one that you would take to treat the tumour, I don't think.

I think surgery would be what the docs go for if the tumour has grown.

About the pituitary gland:
http://biology.about.com/od/anatomy/p/pituitary-gland.htm
The Pituitary gland is also referred to as the "master gland". It administers the functions of the endocrine system.

The pituitary gland is involved in several functions of the body including:

Growth Hormone Production
Production of Hormones That Act on Other Endocrine Glands
Production of Hormones That Act on the Muscles and the Kidneys
Endocrine Function Regulation
Storage of Hormones Produced by the Hypothalamus


There is an interesting little video here about the pituitary gland and what it does. You need Adobe Shockwave Player to view it, which is free from www.adobe.com
http://health.howstuffworks.com/human-body/systems/endocrine/adam-200093.htm

[cassiesmom]

For what? I'm all alone in this world, and always will be. :(



you have us ((((HUGS))))
:love:

[Randi]

Kirsten, the medicine you will get, might be something completely different, hopefully with no side effects. Is it an option to train your muscles? When I had back pain years ago, I went to physiotherapi 3 times a week for 7 weeks and it really helped. Still, I cannot carry too heavy bags without getting back pain.

I hope you will find a reason to keep fighting, I know it's hard in this world, and the politicians don't make it any easier. :(

I wish you all the best - and big hugs! :love:

[happylabs]

I'm so sorry to hear this! ( What kind of problem does this condition cause? This hormonal stuff is so tricky! :(

Hyper-parathyroid...I'm hyper a lot of the time, feel faint a lot of the time. I am trying not to read all of the symptoms just yet. They found it by doing bloodwork a couple years ago. I have high calcium in my blood which means the calcium is not getting into my system like it should be.

It stinks to get old. And you know the other part of being 50-something which I won't go into because there are boys here. :eek:

[Asiel]

So very sorry you are going through this Kirsten, I would opt for the surgery also, have a cousin who had the same surgery and she's doing great. She only takes a pill to replace the natural hormone.
You can't say you're alone, you have a whole forum cheering for you, must count for a bit of something. And you never know what might be around the corner when you last expect it--

[happylabs]

you have us ((((HUGS))))
:love:

Yes...you are not alone! We all may be miles away but we are still here for you. I know it is tough going it alone sometimes. But honestly you are not completely alone.

I don't know if you are religious or believe in God but that is what has gotten me through many bad times and I would never have survived my divorce 10 years ago had it not been for my faith.

If you don't have that type of faith, just believe in life itself. And, you have your kitties! I love my kitties and I talk to them and tell them my problems. I don't know if they understand but they certainly are a comfort.

Hang in there!

[pomtzu]

Kirsten - you'll never be alone - not with all of us nutty PTers around and pulling for you!. So get that thought out of your head - right now girl. And that's an order! :D

As for the pituitary issue, I can't be of any help there. However, when it comes to spinal issues, I'm a pro - unfortunately. I have rods the entire length of my cervical spine, and also in the lower lumbar spine. Without the cervical ones, I would be paralyzed - or dead - thanks to 2 botched surgeries that actually left me with a broken neck, and it took another top spinal surgeon at a top notch university teaching medical center to put me back in working order. Without him, I might not even be here today. Because of the severity of that, I have lost a lot of sensation in my hands, and my right side is weak and I walk with a slight limp, and my balance isn't what it should be, but all of that is nothing that I can't cope with. If I had the proper surgery to start with, I wouldn't be dealing with any of that. But the lumbar issue was totally different - degenerative disc disease, and vertebrae out of line and pressing on nerves. I was in so much pain that I couldn't walk from one end of my house to the other. After a local back specialist sent me to physical therapy, and when that didn't help, referred me to a pain management specialist, I'd had enough. I contacted the doc that did the other surgery - I was in his office 3 days later - and in surgery in less than 2 weeks. I have rods in my lower back, and they in no way affect my movement or range of motion, and I am totally pain free.

So please, don't be fearful of having rods in your spine, if that's what the doctors say you need. You'll feel like a new woman.

Please take care and keep us updated. You're in my thoughts and prayers.

[Kirsten]

Thank you so much for trying to cheer me up. Of course I know I'm not completely alone with my PT family - and my sweet kitty girls... And I do have friends, even though they live far apart, but we're talking the phone. And I'm feeling almost ungrateful that I'm complaining 'cause one of them made this wonderful gift, my new camera...
But often I'm just feeling so empty and lost 'cause I'm always alone in real life, I'm spending every day entirely on my own, and it's hard to change that and build up new friendships here in my hometown with all these health isssues.

No, I'm not religious, I don't have a religion; sometimes I wish I had, I guess things were easier to cope with. I'm trying to be a good person, I'm trying to be tolerant and open-minded, I'm trying not to judge... and I just hope I'll have a better karma in my next life - if there is such a thing anyway.

I don't think I could ever have a relationship. All these health problems are too much of a burden to put this on others. That's why I have to go through this life alone. I'll never be "a part of something", and that is something that's making me very sad for a while now...

Candace, thanks for the link, and the information.

pomtzu, thank you for sharing your experiences with me, re. the spinal surgeries. That's a lot to deal with, and that cervical condition sounds really scary! Glad these surgeries helped.

happylabs, I never heard of hyperparathyroidism before. I was only familiar with hyperthyroidism and hypothyroidism, all these hormonal things are so complex. Besides, my feeling is that there's still a lot of research to be done in that field. I hope you'll feel better!


As for the surgery: I'm not sure if they would remove the entire pituitary gland; it sounded to me as if they would only remove the tumor. Anyway, I have already read that they have a tendency to recidivate, so I would probably need these meds that keep them small... the one that causes psychosis... :( and I really fear that, as I've seen a person with a psychosis a few years ago, and that was horrible; she was about to destroy everyone around her, she even wanted to kill Luna and Lily, and I would rather be dead than being like that.

[Miss Z]

Thinking of you, Kirsten. :love:It must be tough to go through, but as others have already said, PT always has an ear to lend.

On a side note, never think your health problems would be a burden to others. Those who truly care are always prepared to let the good outweigh the 'bad' :love:

[Kirsten]

Thinking of you, Kirsten. :love:It must be tough to go through, but as others have already said, PT always has an ear to lend.

On a side note, never think your health problems would be a burden to others. Those who truly care are always prepared to let the good outweigh the 'bad' :love:


Thank you! But to be honest - and that is almost embarrassing -, one of the tragedies of my life is that there never was somebody who would have cared enough, at least when it comes to relationships. Never! The one and only relationship I ever had ended 'cause I got depressive from birth control pill (yes, as it seems, I've always been dealing with hormonal issues!), and after that; I decided it's healtlier for me to be single. And it was only a couple of years ago that I noticed something is missing in my life.

[momcat]

Kirsten, Please know you are, and have been, very much in my thoughts. You are a highly respected and valued member of our PT family so you're not completely alone. You're in a pretty scary place right now and we all understand that. Many of us here do believe in prayer and you're always in mine. We're here for you, just let us know what we can do. As always, I'm only a pm away. Sending lots of positive thoughts your way!!!

[Kirsten]

Kirsten, Please know you are, and have been, very much in my thoughts. You are a highly respected and valued member of our PT family so you're not completely alone. You're in a pretty scary place right now and we all understand that. Many of us here do believe in prayer and you're always in mine. We're here for you, just let us know what we can do. As always, I'm only a pm away. Sending lots of positive thoughts your way!!!

Thank you very much. Means a lot! :love:

[krazyaboutkatz]

Kirsten, Please know you are, and have been, very much in my thoughts. You are a highly respected and valued member of our PT family so you're not completely alone. You're in a pretty scary place right now and we all understand that. Many of us here do believe in prayer and you're always in mine. We're here for you, just let us know what we can do. As always, I'm only a pm away. Sending lots of positive thoughts your way!!!

This goes for me too. Lots of prayers and positive thoughts are being sent your way. Please take care. (((HUGS)))

[mrspunkysmom]

Kirsten, I am sorry to hear about the tumor. Prayers and pawsitive thoughts headed your way! :love:

[Karen]

Remember, a psychosis is only a possible side effect, and it does not happen to everyone. Kristen, the lovely person I know would had that surgery as a a teen, was as nice, and as stable and non-psychotic a person as you could ever hope to meet.

[robinh]

You are definitely NOT alone. You have made many friends here who care about you.

What is the medication they recommend for the prolactinoma? I have elevated prolactin levels. I took one medication that caused me to be slightly nauseaous and faint at the drop of a hat, so we had to introduce it very slowly. I took it for a couple of years and the levels got much better at which time they took me off the medication. I still have to have blood work yearly to check my levels. They are higher than "normal" but my endocrinologist doesn't want me back on the pills just yet.

[Maya & Inka's mommy]

Kirsten, Please know you are, and have been, very much in my thoughts. You are a highly respected and valued member of our PT family so you're not completely alone. You're in a pretty scary place right now and we all understand that. Many of us here do believe in prayer and you're always in mine. We're here for you, just let us know what we can do. As always, I'm only a pm away. Sending lots of positive thoughts your way!!!

I cannot say it any better than this: :love: :love: :love: :love: :love: :love: :love:

[Barbara]

Hi Kirsten,
I am sorry to hear about your tumor. But I also hope that medicine will have a good solution whcih will defintely be more advanced than 20 years ago. You know I had my brain tumor remived in 1994- and I would most certainly have died of it in 1974.
Plus as Karen said: the side effects of medication are not a must, they are a maybe.
I can imagine that that extra hormonal production wreaks havoc in your life. In hormones, even small dysbalances can have big effects. So let's hope that whatever happens makes your life better:)

[Kirsten]

Thank you everyone for your kind words, and prayers. I've been dealing with terrible headaches for 6 days, but I don't think it's the tumor, guess it's something in my cervical spine. It's a bit better right now.

robinh, the recommended medication are dopamine agonists, and their side effects are nausea, even vomiting, and - which scares me the most - phychosis. I fear everything dopamine-related; dopamine antagonists like MCP also make me feel very strange. Glad you don't need any more medication. Do you know the cause for your higher prolactine levels?

Barbara, yes, I know about the brain tumor you had removed, and I'm glad medicine was already that advanced in 1994 that they did such a good job! The strange thing, I fear the medication more than a possible surgery, due to the side effects. The surgery itself isn't so bad these days; as far as I know, they're removing the tumor through your nose... If I had the choice, I'd go for the surgery, even though it's won't be any fun, either. And yes, you're definitely right; everything hormonal is terribly messed up in my system. Not only due to the tumor in the pituitary gland, but also because of my autoimmune thyroidism. I don't think I'll ever have a chance for a "normal" life. Never had, as it seems... :(

[robinh]

The medication I took was Bromocriptine. I looked it up....yikes, glad I didn't do that before I took it. I might never had started it. I had CT scans and they never could tell me exactly what was causing the elevated levels. It is still quite high, but not enough for me to go back on the meds. Hoping it stays that way.

You have just had a tough time lately. Definitely hope things improve for you.

[Karen]

I don't think I'll ever have a chance for a "normal" life. Never had, as it seems... :(

Oh, dear gal, "normal" is just a state of mind! Think of yourself as a rare breed, a unique and special specimen of humanity! As you are, of course, just ask Luna and Lily!

[robinh]

Ditto to what Karen says!!

[Catty1]

"Normal" is a setting on a washing machine. :D

I gathered from looking at the links (it was a fairly quick look, I admit) that the pituitary is the master gland as it controls a heck of a lot of hormones in the body - including the thyroid hormone.

Your body may have quite an adjustment to the removal of the gland - but it may be waay better for you in the long run.

And just because the writeup on a med tells you the side effects, doesn't mean you'll get them! Ask your doctor how many people have taken the meds and how they are doing. :)

My meds had side effects - and the worst was over in a week as my body adjusted.

[phesina]

To dearest Kirsten, my cats and I are sending you much love and prayers and good wishes and healing energies. I am so sorry you have been going through so much pain and difficulties.

And I want to echo what everyone else has been saying in response to your feelings of loneliness. You are a vital and fascinating member of this group of wonderful people who live all around the world and whom I feel very privileged to know. When you feel too isolated, remind yourself that there are (for example) one person and seven cats in Ann Arbor, Michigan, USA, who think the world of you! We always look forward to your latest photographic explorations and reports on the adventures of your beloved Lily and Luna (who love you back just as much).

And once again quoting Eileen (and thank you, Eileen), who said it SO well for me too:


Kirsten, Please know you are, and have been, very much in my thoughts. You are a highly respected and valued member of our PT family so you're not completely alone. You're in a pretty scary place right now and we all understand that. Many of us here do believe in prayer and you're always in mine. We're here for you, just let us know what we can do. As always, I'm only a pm away. Sending lots of positive thoughts your way!!!

Thinking of you and sending you {{{{{{{{HUGS}}}}}}}} and ~~~~~~~PURRS~~~~~~~ and :love::love::love::love::love::love::love::love:,

Pat, Sydney, Poppy, Elmer, Bob, Sparkler, Lavinia, and Princess Poppaea Sabine Eugenia

[Roxyluvsme13]

The pituitary gland controls the release of gonadotropins, which are things such a luteinizing hormone and follicle stimulating hormone. Basically what controls a female's cycle and hormones and all of that good stuff.

I don't see why it'd be too much of an issue not to have one. I mean yeah, it's gonna screw up your hormones some or they may not exist?, but I'm sure with some supplements and things like that it wouldn't be too big of a deal.

Wishing you the best Kirsten and sending positive thoughts your way.

Oh, and normal is no fun! It's better to be extraordinary and original! :D

[Karen]

The pituitary gland controls the release of gonadotropins, which are things such a luteinizing hormone and follicle stimulating hormone. Basically what controls a female's cycle and hormones and all of that good stuff.

I don't see why it'd be too much of an issue not to have one. I mean yeah, it's gonna screw up your hormones some or they may not exist?, but I'm sure with some supplements and things like that it wouldn't be too big of a deal.

My friend that I mentioned earlier in the thread had to stop taking certain hormones when she wanted to get pregnant, but that was about it, and she ended up having three lovely children just when they were ready - she said "It's like built in 'birth control' - I cannot even get pregnant without proper planning and preparation, which, now that I think of it, should be a rule for lots of people!"

[Roxyluvsme13]

My friend that I mentioned earlier in the thread had to stop taking certain hormones when she wanted to get pregnant, but that was about it, and she ended up having three lovely children just when they were ready - she said "It's like built in 'birth control' - I cannot even get pregnant without proper planning and preparation, which, now that I think of it, should be a rule for lots of people!"
I'm trying to think of what hormone your friend would have had to stop taking but I'm not recalling the information right now, haha.

But the pituitary gland controls the release of LH and FSH like I said, LH is important for an LH surge that induces ovulation, if I remember correctly. And then FSH stimulates the follicle, which makes estrogen go up, if the follicle grows and the egg ovulates and gets fertilized then progesterone goes up, which is important in maintaining pregnancy. Then, if the individual isn't pregnant the corpus luteum is destroyed by something called prostaglandin F2Alpha.

I hope I remembered all that right, I'm in Repro class this semester, haha, so I better know this information by now, but that was recalling off the top of my head so don't take my word that it's 100% correct!

[momcat]

How are you doing, Kirsten? I'm sure that Luna and Lily are taking good care of you since they both are such extraordinary kitty nurses and they love you a lot. Please give them some lovies from me? :love: :love:

And sending [[[[[HUGS]]]]] for you too :love:

[carole]

Dearest Kirsten every time i read your posts, my heart just aches for you, i hate that you feel so alone, i know we all say you have us here and you do indeed, but i know that you need more,it is so hard to see such a beautiful person inside and out, feel so lonely and from what i read unloved, remember you are a great person, who deserves happiness in life, never question that ever.

I know of many people with problems, not all physical that indeed are married and have full lives, you too can attain that Kirsten, and as hard as it is to think positive and believe me i understand, how easy it is to think negative ,you must tell yourself you deserve every bit of happiness the same as the next person.

I so wish i lived closer, i would love to spend time with you, get to know you and help you through this.

You have been given a tough lot to deal with , more than you should have, and i don't know what else i can say to you, but that you are very special to many of us here, and we are always here for you.

Take care sweet Kirsten, and remember your furbabies love you to bits, one thing about animals they always love you no matter what, they don't judge like us humans and ask so little of us in return.

I am thinking of you and am here anytime you need to chat...feel free always to pm me anytime, HUGS.:love::love::love:

[Kirsten]

Oh my! For some reason, I have missed your latest replies to this, I'm so sorry! :o
Thank you so much for your support, and your kind words!

Tomorrow is my appointment with the endocrinologist, and I'm a little nervous re. her decision how to treat the tumor. Will keep you informed.

The past weeks have been rough. Those who are on Facebook may have read my status updates about my hot water tank and gas pipes being replaced. Those days - and the cleaning afterwards - were so exhausting and it took my more than a week to recover from that. It's so embarrassing that I cannot deal any better with stressful situations like that. :o Hate that! The past two or three days were slightly better, I was painting the new gas pipes on Monday; yesterday, I spent the afternoon and evening with a friend in Kassel, and today, I'm not as exhausted as I expected to be after that trip. Now I'm going to drive to Goettingen tomorrow for that doctor's appointment. Hope I won't get some bad news there!

[robinh]

Will say a few prayers that all goes well for you at the doctor.

[gini]

Putting in a few prayers for you that all is going well.:love::love:

[phesina]

Prayers and good wishes and warm energies for you, Kirsten, that the doctor visit goes well.

:love::love::love::love::love::love::love::love:

[krazyaboutkatz]

I sure hope that everything will go well tomorrow. Lots of prayers and positive thoughts are being sent your way.

[Kirsten]

Thank you soo much everyone! Off to Goettingen now...

[smokey the elder]

Good luck! This is going to sound corny, but don't stress out about being stressed out. That's a normal reaction to what you're going through. Your body is hollering, "Enough, already!":love:

[Kirsten]

Good luck! This is going to sound corny, but don't stress out about being stressed out. That's a normal reaction to what you're going through. Your body is hollering, "Enough, already!":love:



Oh yes, it's been enough for quite a while now... :(


Well, I'm back, but no decision has been made yet. As I have suspected already, there are two options; medication or surgery. The doctor said it's up to me to decide which one I want, but she's suggesting to try the meds first. With the surgery, there's the risk of the pituitary gland being hurt, or that the tumor would not be completely removed, or that it comes back. As for my concerns regarding psychosis or vomiting, she said she has about a hundred patients with these meds, and it occured in none of them. However, since I'm living on my own, she recommended to have my doctor here in my hometown have a close look at me, in case I'm "changing"... The thought of someone keeping an eye on me to make sure I'm not going nuts is scary and embarassing at the same time. :(

Anyway, I got a prescription for the meds, but before I start taking them, she recommended to wait for the results of a test they did today; don't know what it is called, but they're testing the pituitary functions. Got something injected, and then they were drawing blood every 30 minutes. If the results are okay, there's no need to rush. However, sooner or later, the prolactinoma should be treated.