hrtofluv - Bone Disorders Message Board

annemv · 04-14-2005, 10:06 PM

Hi, In case you dont remember I have FD and have been trying to figure out what is wrong with me (endocrine) other than FD. Today I found out that I have a pituitary tumor. I am wondering if you know if this is common with FD or McCune Albright?
Thanks and I hope you are well!
Anne

hrtofluv · 04-15-2005, 08:42 AM

Hey Anne!
I had just posted to you on the thyroid board - nothing major shared just wishing you the best. I am so sorry you are having more problems. What prompted you the test that discovered this new problem?
(I had started looking up info for you online and started reading about all the hormones that the pituitary regulates and started freaking about my son's bloodwork - sorry I got sidetracked there for a few minutes.)
Anyway - one of the things I think that would be in order for you to have your endo check is if you have cushings syndrome - which was my first thought since this was the other clinical trial going on during my FD trial - I think they are related (but don't quote me). I did some more research too.
Here is what I found out:
The symptoms of a pituitary adenoma depends on what hormone it secrets.
•Increased growth hormone causes giantism in children and acromegaly in adults.
•Prolactin secretion in males can produce infertility and enlargement of the breasts. In females it may produce no symptoms.
•ACTH secreting tumors produce Cushings syndrome.
•Other hormone oversecretion is rare.
•If a tumor extends above the sella turcica it may compress the optic chiasm causing a bitemporal hemianopsia or compress the hypothalamus.
So - were you having any symptoms? And has your endo checked all the hormones in your bloodwork: ACTH, FHS, TSH, LH, GH, and prolactin? I would want to know all the results and their ranges if I were you.
Can't wait to hear from you again.
Melinda

annemv · 04-15-2005, 09:56 AM

HI Melinda!

I have been having alot of symptoms for a year and a half. I have been to sooo many drs.
I have had all of the tests except for ACTH which was just ordered.
All of my tests come back in normal range

My GH is low though. I think I read that most people with FD have high GH. I tried to tell previous drs this and they of course dont listen.
I am sorry for being so sarcastic I am so bitter. This has gone on and on. If I would not have trusted myself I would still be on the sofa zoned out from anti D'd.
My FT4 is low-normal and my TSH is normal. I have been taking meds for that and it has made a huge difference.
I do feel that I have something wrong with my adrenals. It seems like I have symptoms of cushings and addisons. I guess I will find out.
So I am guessing that I might have a non secreting tumor?

This sound strange but at this point I am happy to have something wrong after being told I am crazy for so long. Maybe now I can go back to work and function like a normal human again! I would also like to have my hair back!
Thanks for responding! I saw your posts about your son and I wish that I could help but I dont know anything about children's hormones. Good luck researching!
Talk to you soon!
Anne

hrtofluv · 04-15-2005, 11:03 AM

Anne,
Yes - when I finally got my bloodwork back last May and the doc said wow - surprised you're not in a coma - I finally was relieved. To have felt sooooo bad for soooo long and every doc saying I was normal - made me think I was just a bit hypocondriac. They also wanted to put me on antiD - but after the first pill - I quit. I felt so zombiefied (probably not a word, but oh well). Anyway, the day he walked in with my first bloodwork and said I was really sick - I cried. I was so relieved.
Now for blood levels - my current doc who is FABULOUS is going by Dr. Domisse's values. He says my levels need to be around these numbers for a person to feel "normal".
TSH (0.1-1.0)
FT4 - 1.47
FT3 - 3.7
My last bloodwork results my ferritin level was low at 6 (range of 20-290). So he thinks that is also playing into my fatigue.
Post back when you get that ACTH levels ans what the doc thinks. Yes - most people with FD have high GH levels, so it does sound like something isn't right.
If your thyroid was in check - you would be getting hair back. Does your doc base his decisions on bloodwork solely or does he go on symptoms too?
Chat more later!
Melinda