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541196 tn?1293552936

pituitary tumor/dostinex/menstrual cycle

I have been taking Dostinex .5 mg once weekly now for about 16 weeks.  I went off birth control about 2 months before beginning the medication while testing was underway.  

My periods have remained irregular since going off BC and starting Dostinex, but more regular than I expected.  

45 days
28 days
30 days
25 days
25 days
and now I am at 34 days this cycle so far.  I took a pregnancy test today and it was negative, still no period.

Medications I am taking besides Dostinex (Cabergonline) are Levothyroxine for Hashimotos, Lexepro for depression and anxiety and I just started a new BP med... I can't remember the name.  

I have also had even more weight gain.  I thought with starting the Cabergoline and and Levothyroxine I'd lose weight... that is not the case. I have gained another 5-10 lbs on top of the previous 30!  I need help getting this sorted!!!!!!!!

Just any comments or related experience would be nice.  
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541196 tn?1293552936
THANKS!!!!!!! I am just so sick of feeling lousy and getting fat. :-)
Helpful - 0
Avatar universal
24 hour Urinary free cortisol tests at least 3
8am serum cortisol at least 3
midnight salivary cortisol at least 3
ACTH 8am fasting at least 3
renin
Aldosterone
FH, LH, IGF-1, TSH, Free T3, Free T3, DHEA sulfate, Vitamin D, Calcium, Ferratin, potassium, sodium,

Those are basics. Then you move on to suppression tests (which do not diagnose) and more.
I had it. You need more than one test, many more than once.
Helpful - 0
541196 tn?1293552936
did you ever find those tests to cut and paste?

PS.  I started today... 38 days.
Helpful - 0
Avatar universal
That first endo (heretofore referred as endummy) ruled you out on one very unreliable test. Endummy would not know a case of cushing's if it hit him in the head. You suppressed and he gave up. AGH!

The second sounds like an actual doctor with a brain. Yes, Cushing's can either be pituitary or adrenal is source. The pain is from the cortisol going up and down - it is like withdrawal. It hurts like heck - all over. I did not have adrenal pain but I know others said they did a lot.

I posted some tests to someone else - I will cut and paste here. But really, you need everything and more, often.
Helpful - 0
541196 tn?1293552936
thanks so much for responding!  

My first endocrinologist saw me and ordered a series of tests... but most of them were centered around the diabetes.  He was the one that ordered the suppression test.  Results were around 1 if I remember.  

I just didn't feel like I connected with him nor did I feel like he was testing enough things.  He actually told me that he wasn't concerned at all with pituitary or adreanal tumors in my case.

I found another endocrinologist and she seems very eager to order a lot of tests and retest them periodically out of "gut feeling".  She is very concerned with the purple stiae and weight gain.  

Question.  Is cushing pituitary or adrenal related?  And is it possible to have physical pain in exhausted or tumored adrenals?  When I feel sudden stress or anxiety from a sudden situation I have extreme pain in my adrenal/kidney/flank area.  

You seem very knowledgable on this.  My next appointment with my endocrinologsit is Jan. 6th.  It would be nice if I could go to her with exact questions or tests to request... anyhelp with that from you would be greatly appreciated!
Helpful - 0
Avatar universal
It may be possible that you have both a prolactinoma and Cushing's syndrome at the same time. It is not common, but it does happen. It happened to me. I had the prolactinoma on the right side and the Cushing's tumor on the right. I know of two others that have had the same.

The purple striae are pretty much a dead give away. I also had Hashimoto's, PCOS, and gosh so much going on that the docs would find one thing, think this was IT and stop and I would just get worse (sorry!) when my hormones were just all over the place.

I suggest that you find a neuro-endocrinologist at a large pituitary center and get comprehensive testing. The dex test may come back as *normal* but you may still have Cushing's - many of us have so if you are not with an experienced doctor, you may be told that this is a test of exclusion whereas it more helps show source (pituitary vs adrenal). The diabetes is probably related to the cortisol. If you are cyclical or have a high cortisol binding globulin, testing can be off. Medicines as well as lab error can all play a role as well. ACTH and renin are very fussy tests.

I had to see a lot of doctors (I was not aggressive enough as I was told to ignore my pituitary tumor - bad bad bad advice) and finally got help 12 years later. I had to have pituitary surgery and later, my adrenals removed.
Helpful - 0
541196 tn?1293552936
oh, just an added note...
My prolactin 4 months ago was 50.5.  Last checked it was 3.3.  I have it checked every 8 weeks... I am due to have it checked this week.

My TSH went unchanged from first blood test to second blood test... around 5.00, so my levothyroxine was increased from 50 mcg to 75 mcg.  I am still tired and gaining weight.

I did a 24 hour cortisol test and a dex suppression test.  My endo wants me to do more testing on cortisol later, most of my weight gain has been in torso (but legs, arms and face are also larger) and I have dark purple stretch marks on thighs now.  

I have developed type two diabetes which my dr's think is related to the pituitary and hashimotos.  

2 years ago I was 115 lbs... now I am 155 lbs.  I am 30 year old female. Married, mother of 1 seven year old son.  

Thanks,
Sarah
Helpful - 0
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