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08/27/2010 06:58 AM

New guy just diagnosed -(page 3)

JordynsGigi
JordynsGigi  
Posts: 786
Senior Member

Hypo-pit is when one or more hormones are not being produced, and you need to take replacements. Here is a link

http://www.pituitarysociety.org/public/faq/ hypopituitarismfaq

If you are taking synthroid to "address potential hypothyroidism concern" and your not actually hypothyroid.. then it will make you hyperthyroid

http://endocrine.niddk.nih.gov/pubs/Hyperthyroidism/ . The full effects of synthroid are not noticed in your body for at least a few weeks.

If you dont have a copy of your lab results. Ask for them.. now and in the future. Its great to keep your own record, so you can see for yourself whats going on.

There are also groups on here for adrenal insufficiency, hypo thyroid, and hypo pit.

Please call your doctor today.. and tell them the symptoms you had this morning.

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08/27/2010 04:23 PM
escinkc
 
Posts: 195
Member

Brenda,

Thanks for the links. I'll read them tonight. I'm back in the hospital again. :/ I emailed my symptoms to them before I posted that message here and they called me and said go to ER since it could be a hemorage or pit apoplexy. Now of course they are holding for the night to watch but I think I am ok. The best part is I get the senior endocrinologist (i was going to be making an appt with for a second opinion this week anyway) since he was on call. Had a very nice consult with him. He said they are testing my

glucose tolerance now as well as switching me to cabergoline which is what I wanted.

Post edited by: escinkc, at: 08/27/2010 04:23 PM

Post edited by: escinkc, at: 08/27/2010 04:26 PM


08/27/2010 06:03 PM
maigrey
maigreyPosts: 125
Member

I've had those symptoms before as well. Hmm... I ended up getting a cardiac stress test and a couple of hormone tests. I have a great ticker. And my numbers were NORMAL. Hmm... normal for whom? That's the question. I cut my levothyroxine dosage in half 50 mcgs to 25 mcgs. It's so tiny an amount. I feel much better now. No nausea or the head throb thing. Starting to think the old pit is turning back on. But you should let your doctors know about those head sensations. That's a weird feeling.

Maigrey


08/27/2010 07:48 PM
escinkc
 
Posts: 195
Member

Hi Maigrey - yes those head throbs are really awful aren't they?

I've told them about the symptoms and that's one of the reasons I am an overnight guest in the hospital again tonight. At least I was able to hang out with my son and wife a few hours ntheyve gone home now so I think I will read myself to sleep.

Ed


08/28/2010 02:27 AM
escinkc
 
Posts: 195
Member

Brenda,

I see now why I confused you. I mis-spoke when I said potential hypothyroid concern. I meant to say hypothalamus. It's all such a big blur at times but I'm trying to keep it all straight! Smile


08/28/2010 06:52 AM
JordynsGigi
JordynsGigi  
Posts: 786
Senior Member

Hey Ed, no problem.. Im easily confused!! LOL

Are you still in the hospital? Did they figure out what your episodes were due to?

Brenda Smile


08/28/2010 07:22 PM
escinkc
 
Posts: 195
Member

I'm back home again. Nothing definitive really came of it but at least it was nothing serious. Probably a combo of meds stress tumor etc I got switched over to cabergoline which is what I wanted to be on. Got a new endo who is the senior partner to the other one I had before and feel more confident now with him on my team. I think I am finally at peace and ready to just roll with it now instead of constant drive for more info. That is a sense of relief.

Oh and they did another prolactin and it dropped from 538 to 322 in 6 days. That

must be a good sign! They aren't really expecting more than 1 cm or so of shrinkage since it is an aggressive invasive type, but I'll take what I can get. Smile

Ed

Post edited by: escinkc, at: 08/28/2010 07:25 PM


08/28/2010 07:38 PM
JordynsGigi
JordynsGigi  
Posts: 786
Senior Member

Thats good news!!

Im happy to hear youre confident with your new endo.. it sure does makes a world of difference.

Brenda Smile


08/30/2010 07:59 PM
JimKT1
Posts: 281
Member

That is good news! Keep on, keeping on!

09/01/2010 01:56 PM
escinkc
 
Posts: 195
Member

Another new twist for me today -- the endo called and said my tumor is cosecreting GH and PRL. She then said that I've won myself a transphenoidal procedure since surgery is "the primary treatment" for GH secreting tumors. As luck would have it, I had an appointment with my (second opinion) surgeon 45 minutes later, so the endo called him right after she spoke with me so he would know her findings.

Bottom line is that he is still very keen on us staying on the cabergoline for another couple weeks to see what shrinkage we can get before going in for surgery. This is because my prolactin level was over 500 to start.

He assured me that he would not "get it all in surgery" unless we were lucky enough to have a very unusual response to drugs prior to surgery... but the good news was that he really didnt see us doing a cranio later because he said we just shouldn't go into the cavernous sinuses under virtually any circumstance for a pit tumor.

THis is a big relief for me -- and this guy is very experienced. Over 300+ pituitary surgeries and 700+ brain annuerism(sp?) surgeries behind him. Was formerly with University of KS med center for 25 years and did ALL of the pit surgeries during that span. He seems really confident and competent, and I feel very good under his care.

Anyone with a combo tumor I sure would love to hear your treatment story!!

Ed

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