Brain/Pituitary Tumors Community
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Avatar universal

Understanding why I'm so unhealthy despite trying so hard to be healthy

I can honestly admit I'm so frustrated and sad that i want to destroy everything around me at times and other times kill myself.

I'm 32 male that was diagnosed with a macro prolactinoma when i was late teens and despite all treatments and all my own hard work to get better have slowly gotten worse.

I eat well, train with weights,jog,my job involves a lot of walking and lifting also..gave up smoking...Don't drink... And you wouldn't know it to look at.

I have hypogonadism looking body most days,some days it can look a little better toned.

Diffuse hairloss on head,little to no body hair or facial.

Poor wound healing

Extreme bloating or water retention

Fatty lower face and hips belly

Bier spots on skin

Eyebrows thin out then grew back then fall out in same spots over and over

Reclusive and withdrawn

Blocked nose and ears nasal sprays work temporarily

Erectile dysfunctionality despite having strong urges.

Overly emotional crying at silliest things

Flu every month or so ESP when working out hard

New allergies... Seem to have contact allergies to everything

Skin rashes from silliest things

Falling asleep through the day then up all night because of it.... Crashing after work being a big problem.

I just look unwell and a slob despite working my *** off daily!

Im only on dostinex now as my adrenals are working better so was taken off hydrocortisone. They tried taking me off dostinex but levels increased so realised I'm on dostinex for life.

Please help me

1 Responses
Avatar universal
What is the status of your tumor? Did the meds reduce the size of the tumor? When was your last MRI, and did you get a copy of the report?

Are you under the care of a neuro endocrinologist? I ask as you may need other hormones. Just because it was fine once, does not mean that it stays fine.

It can depend on where your tumor sits that you can have more issues. If it is wrapped around the stalk, that can somehow and sometimes impact the immune system (I have seen papers on deviated stalks being associated with poor immune systems). I know in my case, I have a poor immune system and my tumors were small.

So, it takes being organized, seeing a proper pituitary doctor and maybe getting allergy testing (I just found out I was allergic to something that is in 99% of every soap, toothpaste etc so pretty pissed).
Get copies, and learn.

Modify your workouts maybe... I know I can't work out at all.
hey rumpled long time no speak, hope you are keeping well yourself! aswell as keeping all of us on here in good shape.

I am a typical guy when it comes to doctors I turn up and let them do the talking and it's usually just very brief... everything is .... keep taking.... etc.

I have been taken off of Hydrocortisone completely so i'm guessing my adrenals are now functioning as they should be ?

I was taken off my dostinex/cabergoline as my prolactin levels were good but they shot back up after a 3 months and my endo has now decided to keep me on it forever or for at least a very long time.

my tumor was a macro that's all I know in terms of size,placement etc...

As far as allergies go well I have never had any my whole life but I seem to be falling to bits in my 30's.

Constant sinitus blocked ears and nose along with acid reflux issues and yes also now have a bad allergy to soap powders as I was itchy eyes and breathing issues with my bedding that I never had before so I now have to wash them a second time in just water to remove the soap completely.

same goes for shower time I need to avoid any shampooing or shower gel or only have it on me for a very short time as my skin dries out badly.

I have diffuse hairloss on scalp that can look just like normal male balding so doctors just put it down to that but I also have thin hair on the sides of head and around the back.

eyebrows thin out in the same patches over and over again but grow back. so probably spend half the year with patches and other half with them filled in.

very little facial hair for 32 years old and little to no body hair, which is crazy as my brother is hairy as an ape!

always puffy and bloated looking except when I eat plentiful and unhealthy!!! yes I find when I eat garbage especially lots of chocolate and pocornetc..I look and feel much better.

but when I eat healthy and exercise I look and feel like crap...

I lose more fat/weight eating like a horse and stuff like mcdonalds and pizzas than I do when I eat healthy and exercise daily.....

and my erections return better when I go that route.... when I exercise and eat well they are non existent.

I have requested a new endo, one that is part of the pituitary excellence recommended my pituatry.org.

decided it's time to explain my symptoms to someone more knowledgeable than my current endo.

Just curious do you have any white spots on your skin ? that come and go with cold weather or elevating the limbs ?

this is something I have had also that must be linked as it started around the same time I started to lose hair in my teens and things went downhill.

it was one of the first symptoms along with hair thinning and being ocd.

they are called bier spots.
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