It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Pituitary Disease Message Board

Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared

Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 04-02-2011, 07:21 PM   #16
Join Date: Jan 2011
Location: Calgary, AB
Posts: 67
Jul2 HB User
Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared

I do sometimes worry that the heart problems may become bad again, but for now they feel great! Surely I must have died and gone to heaven!

I only take a quarter pill twice a week, which raised the heart beat from the low 50's to the low 80's. Had I not taken this medicine, I likely would've ended up fainting in the streets and with a pacemaker like my mother. Blood pressure is higher too. Used to be about 110 and is now 140 but it feels great! Now if I get tired from it beating a bit too fast, I just lie down for a few minutes and then can go again after the motor is revved up. Gradually I'm getting more energy.

My eyes had become bad too, snapping out of sync constantly and going double in each eye. Every time this happened I was nearly blind for the next hour or two. Still have double vision but mostly only in one eye now and they don't snap out of sync anymore. Fantastic!!!!!!!

This medicine also stopped two daily headaches (which often occurred at the same time), a mild one side to side and a severe migraine from left eye to the back of the head. Within a short time on this pill (maybe one week?) the headaches were reduced by about 50%, and within maybe two or three weeks, by about 90%. Pretty well never get them anymore and if I do there is only one barely noticeable.

No longer does it feel as if fluid is running from one side of the head to the other when lie down either.

Sneezing 25 times a day has also been reduced to about 10 times. That nearly drove me crazy too.

This medicine is supposed to be gradually increased, but instead,mine has been decreased. I have no idea if I should increase it in the future or not. I started out at 1/4 pill the first week and then increased it to about 3/4 around the second and third weeks, but that was way way too powerful.
So now it's only 1/2 of a 1/2 pill twice a week. (In other words, 125 a week instead of 250)

When the dose is higher, the heartbeats jump to the low 90's. It's fun staying awake like a teenager for 40 to 50 hours at a time with the higher dose, but it's extremely hard on the body at the end of that period which was why it the dose was cut down.

The now low 80's heartbeat is about 98% stabilized and feels fantastic! Two weeks before starting these pills I was so sure I was going to die that I had sold a number of personal possessions and discussed financial arrangements with the bank. It was that bad!

Another huge change was a shock to the muscles, because when you're in a near-coma-like state for so many years you lose all of them. I couldn't even climb on a chair with my feet or get up from sitting without grabbing on to something. After just three months or so I can now do both with ease.

In just a few years my weight from this tumour had jumped from 125 (5'4" height) to close to 270 pounds and most of that was because I just couldn't stop sleeping! Most of my body parts had grown tremendously and the spacing in my teeth had become a bad problem too. I also bit my lip repeatedly by accident when chewing (still do often but it appears a tiny bit better), and feared lip cancer from drawing blood so many times.

I didn't want to do anything and didn't want to go anywhere because I needed sleep so badly! It was terrifying! Haven't lost more than 10 pounds since starting the pills about 3 months ago but look better anyway because of gradually increasing muscle strength.

According to Dr. Charles Clevenger who did a study with the University of Pennsylvania a years ago and had won awards for it, prolonged high prolactin causes breast cancer to spread to the lymph nodes not just willy nilly, but with direct purpose, so this too was a major major concern after developing cancer a couple of years ago (which is another disease caused by pituitary tumours, as are respiratory problems, lung cancers and seemingly also melanomas, from what I have read).

However, since starting on Dostinex, (Cabergoline) my prolactin very quickly jumped from somewhere around 123 to just 7!

This pill also corrected an extremely severe bowel problem that continued for many years too -- very severe, and now I'm a once-a-day person like I should be.

There were a couple of downsides though. The main one is violent sweating one minute and freezing cold the next (although the day sweating seems to be stabilizing a little after three months). The night is worst. Even at 61F I sometimes get out of bed and stand on the snowy deck for a few minutes, but the positive part is that it saves a whole lot of money on fuel bills.

Summer heat could be scary to deal with but with melasma and multilple skin problems I hate sun anyway.

Sometimes this pill causes stomach upset too if it's taken once a week in a larger dose instead of twice in smaller doses

Oh, and it also raised my thyroid to about 4.5, but I started taking iodine and I think that will fix it. My hair has also stopped falling out. Wow, wow, wow!

The only other problem is that it's hard to know how long to take it for. Clearly doctors can't send patients for MRI's every 2 months and patients wouldn't want that either, by any means! Hate gadolinium, especially with so many bad skin problems already including very large patches on my face! That stuff can cause deadly problems!

So after a year I will get another MRI. (Kind of a pity in a way, because judging by the astounding and unbelievable changes in such a short time I could well be cured next month and will still be taking it for another 8 unnecessarily. Kind of hate that part, wondering if it could indeed make the heart worse again by then). Since the heart was never tested though, even when the arrhythmias were serious, I won't be able to tell if problems have developed after the pill.

This disease (or something) caused about 50 more medical problems, respiratory problems, numerous skin growths of all shapes and sizes, stenosis, osteoarthritis, and a spine so severely curled it's probably the worst in the world, as well as really badly deformed and painful overgrown feet and foot tumours, so I'm not exaggerating when I say I wish I had taken Dostinex years ago.

Dostinex is the best drug in the world (and this is coming from the world's greatest drug-hater so it has to mean something!)

Again, if you even "suspect" you may have a pituitary, "RUN," don't walk to your doctor, and get at least a blood prolactin test. Ask for the copy of your lab sheet so you can see how high your level is compared to the levels of other people.

Last edited by Jul2; 04-02-2011 at 07:29 PM.

Sponsors Lightbulb
Old 04-02-2011, 10:01 PM   #17
Join Date: Mar 2011
Location: Rockford Mi, United States
Posts: 3
pursable HB User
Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared

I do worry about the dostinex, of course the doctors said nothing to me about the possible heart problems if on dostinex, had to do my own research. Once I found out about the possible issues with this medicine I stopped taking it but what other options are there?

The following user gives a hug of support to pursable:
Jul2 (04-04-2011)
Old 04-03-2011, 09:12 PM   #18
Join Date: Jan 2011
Location: Calgary, AB
Posts: 67
Jul2 HB User
Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared

Originally Posted by pursable View Post
I do worry about the dostinex, of course the doctors said nothing to me about the possible heart problems if on dostinex, had to do my own research. Once I found out about the possible issues with this medicine I stopped taking it but what other options are there?
It's true that doctor's don't tell you about the other options. You have to find out about them for yourself through the Internet. I do believe there is some kind of shot you can get that starts with an S, but for now I've forgotten the name of it.

I'm not totally comfortable with Dostinex either because I'm confused about what's in it -- seems something like a fungus derived from plants (LSD type) and even Cobalt from what I understand -- but again this is just the way a novice understands it. It's the Cobalt stuff with that scares the living daylights out of me because I don't like anything to do with uranium inside of me since I am already bombarded with it with gadolinium and radiation from everything else.

But once I tried the drug it worked such miracles that even with its dangers I had to accept it. For me there was no other choice. I don't imagine the shots would be provided for most people and they might be very expensive.

I did try the Bromocriptine which is also the same fungus derivative but that left me with a severe severe blow-to-the-back-of-the-head feeling, as if I had a stroke or something.

Since that was identical to the original blow that led me to discover the tumour in the first place, which left me disoriented and confused for a few years, I was terrified of this feeling once again, (and so was my doctor) so I dropped it immediately.

After that I was too afraid to try the Dostinex (Cabergoline) for a couple of years which was why the tumour continued to grow, and wasn't aware of any other alternative. Maybe the shots didn't exist at the time. (If I find out what they are I will let you know).

I also had a cousin who tried the Bromocriptine first and she got fairly sick from it so she too switched to Dostinex with raving results, and today her tumour is gone.

Dostinex has a better "cure rate" with regard to getting rid of tumours from what I've read too, so it is worth your while going that route if heart problems aren't too bad.

And if your heart problems are caused by a heartbeat that's too "slow", it may even improve if you go on the Dostinex, as mine did.

The good part about Bromocriptine is that it doesn't appear to have any kind of uranium derivative in it.

Again though, I'm just an Internet user so I can't speak with any expertise on anything I'm saying here, (or from what I've "understood" from the Internet) so you might want to look up some things yourself by searching for words like Dostinex and cobalt, Cabergoline and cobalt, dostinex and fungus, Bromocriptine and fungus, and so on.

A fourth alternative, a brain operation, is dangerous, Any kind of operation to the brain is like playing Russian Roulette. From what I've read the death rate (or rate of extremely severe complications) is actually much higher than most people would be comfortable with (especially after the tumour is bigger than 1cm, in which case the tumour can return. Required radiation afterward would also damage good brain cells). So the best route is to always try the medicine first.

You may really hate it but believe me, my life wouldn't have been so badly damaged had I started on Cabergoline years before. Because I waited so long the damage is now very severe and much of it is irreversible.

As a "patient only", I would suggest getting back on the Dostinex as quickly as possible if you think your heart can tolerate it, but take it in weak amounts like I'm taking, especially if you're over 60. I only take 1/4 tablet twice a week and it's very very effective so far.

Now that you've stopped, your tumour will continue to grow if you don't "do something" to stop it and I'm sure you wouldn't want to end up like me! The smaller it is when treated, the better for sure!

Last edited by Jul2; 04-03-2011 at 09:17 PM. Reason: grammar again

Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Excesive weight gain related to high levels of Prolactin??? Tahlien Hormone Problems 15 08-05-2012 08:31 AM
if a nodule produces thyroid hormone why..... moonlightandjj Thyroid Disorders 3 11-24-2008 09:29 AM
My Journey to Hormone Heck T4T3hell Hormone Problems 5 07-15-2008 08:28 PM
Please does anyone have info on thyroid hormone resistance or pituitary gland tumor? Katie613 Pituitary Disease 6 06-18-2008 06:02 PM
Hypothyroidism and hormone testing- need advice bittygirl Thyroid Disorders 8 05-12-2008 05:30 AM
Narcotics and Hormone Levels forginon Arachnoiditis 12 02-19-2008 05:24 PM
Hormone testing? Low normal TSH Minerva78 Thyroid Disorders 2 07-01-2007 04:25 AM
hormone problems sherilyn b Hormone Problems 4 07-14-2006 02:08 AM
Pituitary Gland Tumor ? SpeisFamily Pituitary Disease 4 08-11-2004 08:44 AM

growth, hypothyroidism, pituitary, thyroid, tsh

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 08:36 PM.

Site owned and operated by HealthBoards.comô
© 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!