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constant battle to get hormones correct.

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Replied by PNA-Tammy on topic constant battle to get hormones correct.


I don't know where you are located or what type of doctor that you are seeing, but I highly recommend finding a pituitary specialist. We have a list of pituitary specialists here on our website that may be able to help you.

Here is a link to our list of specialists:


Because the pituitary controls so much of our daily lives finding the right balance can be difficult and often requires the care of experts. You may have to travel a little for expert care, but if you can get everything under control it will be worth it.

If possible you may want to consult with a team of specialists there are several pituitary centers listed on our website as well.

Here is a link to our pituitary centers:


I hope you are able to find some help and get your health back on track. Feel free to contact us for additional information or if you have any questions. We can be reached at (805) 499-9973 or via email at [email protected]

Take care,

Tammy Mazzella
Pituitary Network Association
1 year 2 months ago #10446

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  • fendertele
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constant battle to get hormones correct. was created by fendertele

hey everyone ,

I'll try to keep this short as possible as i know you've probably heard the same things over and over again....

was diagnopsed with a macroprolactinoma over 10 years ago and put on cabergoline and also put on hydrocortisone as my adrenals werent producing on their own to kick start them if i remember rightly i was secondary hypogonadism and secondary adrenal insufficient

at the time my symptoms were major weight gain, skin rashes, oily skin and lactating from my left nipple.

they tried to take me off caber but it shot back up after a few weeks so i've been told im on it for life...... i was taken off the hydrocortisone when my adrenals started working....

my problem is i still have lots of symptoms that they either dont know what is causing it or aint interested apart from controlling the prolactinoma.

I work out 4-5 days a week and watch what i eat... i've tried all sorts of dietsand supps to see if it can help but get nowhere....

You wouldnt think to look at me that i keep fit except from massive muscle gain... i get steroid like muscle growth... without taking anything... but people still think i do.

anyways these are my list of symptoms that i cant get under control....

Weight gain around face/chin, waist and chest arms and legs are not affected as much.
water retention... i can put clothes on feeling loose and midway through the day they are so tight i need to undo my top button on my jeans.

puffy nipples they look like a pubertal teen girls.... they come and go like something is fluctationg.

unable to sleep for longer than 2 hours at a time.... always needing to get up for a pee...

always burning up like a fever... when most people get tired they get cold, i get feverish despite being cold to touch.... also get sweaty feet

hairloss all over patchy scalp, i've ended up shaving it off on top because it was so patchy.

and a strange body vibration when i wake from sleeping.... hard to explain it isn't caused by my heart rate and my pulse is okay... but my body feels like it is being shocked by a very low level electric shock...

i have the strangest feeling it's cortisol related... as all of the above can be temporarily reduced by lying in bed for a few days eating absolute junk food by the mass amount... almost disgusting amounts... then i come back out of it looking leaner and feeling better.
1 year 2 months ago #10445

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