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Pituitary Disease Message Board
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Old 03-04-2007, 08:15 AM   #1
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Had TT; now have pituitary tumors

Hi everyone - I'm hoping someone can help.

I had a TT in Jan. 2006 for suspicious nodules and large goiter. Luckily no cancer; dx with Hashi's. (Previous labs were always fine, just high antibodies, which led to the Hashi's diagnosis.) Have been on 125 mcg of Synthroid since. Surgery/recovery went very well but I still don't feel well overall -- continued weight gain, fatigue, intolerance to exercise, bad headaches and leg pain...and past few months started having hot flashes multiple times a day and trouble sleeping.

Last fall TSH and free T4 tested high, so endo decided to send me for an MRI of the pituitary. Results showed two microadenomas (4 mm & 5 mm). A repeat MRI 6 months later confirmed the first MRI. I have read that having two adenomas in the pituitary is rare and I'm concerned.

Has anyone here every dealt with both thyroid and pituitary problems? I'm wondering if my pituitary is what caused my thyroid problems. Or are the antibodies causing both my pituitary and thyroid problems??

My endo wants to do hormone tests next. She said I might just need to get on meds to shrink the tumors. I'm wondering if I should not waste my time with her and find a pituitary specialist. I'm VERY TIRED OF FEELING CRAPPY!! I'd appreciate any advice! (I posted my problem on the hormone board as well!) THANKS!

Last edited by CVDP; 03-04-2007 at 08:17 AM.

 
Old 03-04-2007, 10:52 AM   #2
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Re: Had TT; now have pituitary tumors

I have thyroid problems that are probably due to pituitary (normal TSH and high hormones) but probably not adenomas. Some people have non functioning adenomas. They're just there and do nothing. That is why your endo wants to do the hormone testing. She wants to find out whether or not they are producing hormones. She should be checking the TSH alpha subunit and molar ratio along with all the other endocrine hormones to see if the alpha subunit or molar ratio is raised. In TSHoma, which is the form of adenoma that affects the thyroid, it is.

If she's on top of this thing and is doing the testing, you may want to stick with her and give her a chance. If you don't feel she can handle it then a pituitary specialist might be your best bet.

Best of luck,
Helen

 
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Old 03-04-2007, 12:56 PM   #3
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sue1234 HB User
Re: Had TT; now have pituitary tumors

If she wants to put you on meds to shrink them, then that must mean that they are prolactinomas. Has she tested your prolactin levels?? If they're not elevated, then I would find a pit specialist. From what I've read over the last year, you can not shrink the other kinds of pit tumors. She needs to be checking your adrenal hormone(cortisol), your estrogen, FSH,LH, and your growth hormone. All of those, along with your thyroid hormones, can be affected. Sometimes all, or sometimes just one of them, or a combination. A pit specialist or a very knowledgable endo would be best.

 
Old 03-05-2007, 09:27 AM   #4
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Re: Had TT; now have pituitary tumors

Thanks for the responses. I don't know yet whether they are prolactinomas. I had bloodwork done this morning (checking all the hormones and more), so we'll see what turns up. Last fall, my prolactin level was 7.7, which was normal (ref. range 1.0-30.0). I have also read that prolactinomas are typically treatable with meds, others are not. I've decided to see what my endo recommends and then regardless, make an appt. for a second opinion with a pituitary specialist. I live in NE Pennsylvania, so I will probably have to travel to NYC to find one. Hate to go through all this again as I just went through multiple tests, specialists, surgery etc. with my thyroid. Now I feel like I'm back to square one. I'm a little discouraged at the moment.

 
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