Where to go form here ?

[anonymous564]

Hi im a 25 yr old male and for the last 6-7 years my physical and mental health has taken a bit of a beating, its only in the last year that i have started to get some answers/treatment for what im hoping may in time be the answer to whats been going on with me.

I was diagnosed with a Prolactinoma and Secondary Hypogonadism about 8 months ago and told that i could have had it since my early teens as ive had no interest in sex and also have no facial or body hair and delayed puberty. I have been taking Cabergoline 2x weekly for the Prolactinoma and have just recently started taking Hydrocortisone tablets after another blood test.

In the last few years my body has changed a lot and its led to me having Social anxiety and BDD, and im hoping that in time things will fix themselves but since starting the treatment i havent noticed any changes ( maybe i haven't given it enough time ).

Symptoms
----------------

Lots of weight Gain - went from 14 stone to 19 stone, most of the fat is around the abdomen,chest area and bloated face.

Psuedo/Gynecomstia - cant feel the hard lump, but get puffy nipple and some soft lumpy fat behind the nipple

diffuse hairloss- top,sides,back of head, and some receding accompanied with tingling scalp,red areas and pimples

Diffuse eyebrows - same as scalp without the pimples

Bier Spots - White spots all over skin, worsened by cold temperature ( circulation problem )

Poor wound healing - Tiny vcuts take forver to heal and some of them never really heal and leave red marks.

I'm not sure how much of these things can be associated with the conditions ive put, but i take it there cant be anything else going on with me as i would have been told after my blood tests ?

The one thing i have noticed though since starting treatment is that im starting to get facial and body hair and ive sropped a bit of weight with excercising that i couldnt lose before even with excercising.

Should i just continue to wait it out and hope it all corrects in time or is there somethign else i could try or be doing to get things fixed ?

thanks

[rumpled]

I think diet advice would be best for your doctor. It really depends on what your own need are. I have weird needs - my diet is high salt, high calcium as I have no adrenals and I am borderline hypoparathyroid. I can't see my diet working for anyone else :) !

I was lucky in that I don't smoke and drink only on holidays (where my hubby's family loves to get me tipsy on one half a glass of wine and make fun of me...).

I do take vitamins too.
Jennifer

[anonymous564]

I was also going to ask you rumpled, i know the meds are trying to do the work for me but ive decided to try and give it some help on my end.

Im not the worst eater but i do tend to eat some bad food at times, i also smoke and probably dont drink enoug water unless im excercising.

Do you follow any kind of diets or regimes to help youre body out ?

If so would you be able to recommend something i could try out to help my body get back to working properly ?

thanks

[rumpled]

Wow... six months... I hope the new endo puts you on a more regular schedule for monitoring. I used to judge the endos by the time between the appointments and I felt 6 months was a kiss-off.  I get mine every 4. I also get my testing done before the appointment so we can discuss it.

It is very awkward about the symptoms - it may help to make a list and fax it to him or hand it to him in the beginning of the appointment. Don't put so many questions on there that it overwhelms the doctor, but make sure you get some of your quality of life issues addresses - plus it can clue him in on stuff going on. Also, have you had your bones looked at? With low T, your bones may be thinning, so you may need a dexa scan. Cortisol will lower T.

It may not be another tumor (BTW, a second tumor hid on me for 12 years, but they scan better now, and dynamic is what found it). It can also be the pressure from the one tumor that hits on another area that causes another hormone to go off - but you sound as if you have more than just prolactin going on, and they don't seem to have tested you well. What is your ACTH?

Hopefully once you get the source issue taken care of - the pit - your skin and all should clear up. My huge problem with Cushing's was not healing - so I got sent to an AIDS specialist. He laughed as I was so not in the profile, but he could not figure out what was wrong with me either. But he said he AIDS patients healed better than me. I had some even small wounds take more than a year - even with help from an oncologist.

[anonymous564]

Because im in the UK i need my GP to refer me to any specialists and if he doesnt feel the need to or want to thenim kinda stuck. So many times ive wannted to see Derms and other specialists and have been held back by this system.

[anonymous564]

hey thanks for keeping up with me on this, i have just a endocronoligist and a gp dealing with me, i see the endo every six months and although im glad he is helping me he doesnt talk to me much about my issues and likes to make jokes a lot about my sex drive returning etc..... so with him being this way i feel kinda awkward trying to push my symptoms on to him.

The good news is im getting a new endo soon as he is moving on to another hospital so maybe the next one may be easier to get help from and may be more understanding.

Would the two tumors not have turned up on the mri ?

yeah i agree i was a bit miffed when they told me they were starting me on hydrocortisone as i associated it with low cortisol and i have a lot of high cortisol symptoms.

[rumpled]

You can have two tumors - they did not test enough - not enough to know what is messing with the testosterone. No dhea, no renin, no aldosterone, no SHBG... and there are other testosterones - they should run a full panel.

[rumpled]

Your adrenal tests are iffy there...

I have to say that I also had iffy tests on my stim test yet my diagnosis was Cyclical Pituitary Cushing's - which in reality, fits your symptoms much much better, but many doctors do not believe in the cyclical form, nor know how to test for it, interpret the tests etc.

My weight used to change a lot too, until finally it just kept going up and up.

The hair loss is a symptom of all the hormonal stuff going on - I know we have *talked* on both forums, adrenal and now here, but I really think you need a different kind of doctor, and one that knows Cushing's more - is your doc a neuro-endo?

My MRI pics (post op, I should put a pre-op one up there... but the programs are not Mac friendly grrr) and my tumor too.

[anonymous564]

this was my first blood test that got them thinking something was up and led to me getting an MRI and diagnosed with Prolactinoma.

http://img88.imageshack.us/img88/16/27042010204453.jpg

[anonymous564]

So far in the Last 7-8 months, i have been put on Cabergoline x 2 weekly and it has according to my 6 months checkup lowered my prolacting levels and shrunk it a little but he never gave much detail of how much.

He also started me on Hydrocortisone on the same day he told me about the prolactin levels, and never really went into detail as to why, i got a letter a few weeks earlier from the blood tests.

My baseline cortisol was lowerisg 169nmol/l and the peak is 479 which is at the very upper end of responsiveness that would be termed "equivocal" and that it would sauggest there is some comprimise of the pituarity adrenal axis  and would justify hydrocrotisone replacement in the context of secondary hypogonadism and reduced growth hormone as refelcted in low igf-1.

So im really clueless as to what is going on as far as a i knew low levels of cortisol = weight loss, but i ballooned up to 19 stone at one point, i havent been given anything else but the cabergoline and hydrocortisone and all the symptoms ive mentioned were all there before the diagnosis and treatment began ?.

thanks for all youre replies Rumpled, im getting more help with this with yourself than my specialists.

PS: never used Propecia or anything as i was afraid it may counter the effects of my prolactinoma treatment, although i have been toying with the idea of starting as my hair is getting worse.

[rumpled]

Are you being treated for the prolactinoma? That should resolve some of that, and then some of the other issues may or may not be related.