I must say I never ever heard of this test before! So I looked it up and so yes, it is a marker for pituitary tumors - but it is not specific for a single type.
An MRI is one thing, but I hope not only is it going to be a good dynamic MRI (the pituitary protocol) but they do the testing to determine the type of tumor, if any, as testing is the real thing and sometimes the teeny lesions don't show up.
Depending on the type of tumor depends on the treatment needed.
Your doctor should be doing a complete Pituitary work up. Basically some tumors secrete extra hormones and that can be a tell tell sign. BUT A none functioning tumor like I had does not secret any extra hormones. I was told I did not have a pituitary tumor because my blood work didn't indicate extra hormones. I went to the doctor because I was not having my period for over a year and that is a sign of a tumor. Anyways no one had me do a MRI and low and behold I got extremely sick, sodium dangerously low, severe headache and loss of vision. My tumor got so big it had a stroke and then it became a medical emergency. If I could do it all over again I would have requested an MRI. It's better to take care of this before it is a emergency. I had the operation at UCLA my vision is back and I'm just about back to normal. Does your daughter have any symptoms? What was the reason to see a doctor?
I myself had never heard of it - so I was stumped. The endo I saw said they usually have their MRI's done at REX in Raleigh. Based on my previous experience with MRI machines, I now understand that different MRI machines can conclude different results. I'll have to look into the type of MRI machine REX has, etc.. i will be paying for it - after all - so I might as well insist on my preferred MRI machine, right?!
Can the MRI determine the type of tumor (if it applies) it is? This is critical info and I greatly appreciate the heads-up.
I am so sorry to hear about everything you've been through, honestly. The endo wanted to do an MRI based on current and previous lab results on this Alpha Subunit element and family history.
30+ years ago I had an older sister that passed away from what I was told by my mother - a pituitary tumor. She was 12 and misdiagnosed for about 1.5 years and cancer had spread to brain stem.
Then about 2 years ago, my 7 year old daughter was diagnosed with a secreting pituitary tumor (very small one) - went to multiple doctors and MRI's, etc. Bottom-line for my daughter - Duke MRI showed a tumor. NIH MRI was not conclusive and thought she was possibly experiencing precocious puberty. Said - lets wait and see what happens and EVERYONE wanted to put her on Lupron. Long story short - I decided to not do the Lupron due to potential side affects, etc... I was told within 1 year - she would start her period. One year passed last December - and my daughter is doing great and she has not started her period - thank goodness!! For a long time - she had major major fluctuations in her mood and personality, her ability to focus and learn in school, night terrors, night sweats, hair falling out, low grade temperature, and the list goes on....
but today, thank goodness for guardian angels, she is doing fabulous (knock on wood please)!
Pituitary tumors are usually benign conditions. Always that rare tumor people can get. Glad your daughter is doing well. Ya I started to see the do because I wasn't getting me period at all for over a year.
Uh - precocious puberty is something to stand up and wonder about and investigate!!! Holy moly!!!
On the MRI question, I had an MRI in 1991, no tumor, in 1992 - 6mm tumor (huh?), then every year it changed sizes - in 2004 they said that tumor on the left was gone but there was another one on the right (WHAT!) and surgery found both... I used to hunt around to 3T (three tesla - new machines) and make sure they know how to do the pituitary dynamic protocol - I talk to the techs and make sure they have the gizmo to shoot in the contrast without taking me out of the machine. I have had *supposed* dynamic where they took me out, and I got furious (lol) and the tech there told me 3T was only in use for experiemental - dude, my last 4 MRIs were 3T!!!
I would contact the magic foundation - they may have ideas too.
I had periods - mine were just wacky. But they just kept thinking it was female stuff - all of which I had - so don't rule out pit just due to concurrent conditions.
Thanks for the feedback. I will ensure that it's a 3T MRI machine and that the contrast is feed without taking me out of the machine.
My periods are very very whacky and extremely painful. I usually am incapacitated for at least the 2 day into it.
That is CRAZY - 1 MRI showing not tumor then a 6mm tumor the following year? WTH!??
Something is just not right with me - I can sense it. Will wait and see what happens once I get an MRI. I plan on calling REX and finding out about the type of MRI machine they use and the protocols, etc... When one is experiencing so many symptoms - the waiting part can be very overwhelming.
If I indeed have a pituitary tumor causing my issues - everyone will hear certainly about it - especially based on family history. thanks for your feedback "rumpled". You, once again, have been a wonderful source of support and info over the years. xxoo
I remember those periods - I celebrated my hyst! In fact, the doc came out and APOLOGIZED for waiting as I must have been in so much pain that he thought... all my imaging was never right - like my uterus did not show up enlarged but it was, my adrenals were huge but showed up normal (even after removal! score!). I think I am made of lead.
Oh I am Jennifer... my middle name is "idiopathic" ha ha ha ha ha....
Did you have unexplained itching - maybe on your hands, forearms, etc. or maybe by your knee? Just out of the blue - sometimes I get these "itch" attacks that drive me crazy. Been happening for a few years now - but somehow I think everything is all related.
In addition - I have suffered in the past and most recently within the past 10 months, severe carpel tunnel and severe aches around the base of my left thumb. I had carpel tunnel surgery on my left hand to correct it 10 years ago. I am right handed and use my right hand on my mouse (computer), so I am perplexed as to why I am having such severe pain - especially around the base of my thumb area.
OK. Now you're going to think I am a hypochondriac when I tell you this but within the past 2 weeks - I've noticed swelling on the bottom left area of my thyroid. It's evident when you look at it. Kinda looks like a fat neck but the right side is not the same size.
I honestly feel like something is going on with me but at the same time - I feel frozen in time - almost afraid to deal with it...
I called my endo yesterday and asked them to schedule my MRI with DUKE on the 3.0 T and they seemed a bit bothered, and said that it would take longer to get an MRI done there. Any suggestions as to how I can expedite it?
Based on ALL of my symptoms - I'm wondering if something is going on with my autoimmune system and everything else is merely a side affect of THAT... My Mom suffered terribly with RA. She passed 2 years ago at the age of 64 due to congestive heart failure. My youngest brother also suffers from RA and has really bad nodules all over his hands and arms. I had never seen anything like that... Have you??
Thanks so much for your feedback. It means a lot to me.
Re the itching - yes. I don't know why. I actually went for a lot of allergy testing and all - but for the most part, I was clear except for dust and dust mites. I take a long acting anti-histamine daily to help, but I am still a bit itchy.
I got more issues with my legs and feet - plantar fasciatitis (sp!!!) and for a while did wear a brace on my wrists to sleep to help the pain. All that is pretty much gone once I got my hormones fixed to a more normal level.
Have they done a thyroid ultrasound? Did the doc see the swelling?
I have had some docs who swear by the 3T, others could care less... but the places who have it are super busy as there is only one machine and it is going all the time. I also have to wait for my appointments as well. You can do the regular machine. Read up and do what you feel is best for your case.
As far as I know, pit tumors are auto-immune too. While I know once you have one auto-immune disorder you tend to get more, and auto-immunity does seem to run in families - I don't know much about RA at all. Sorry about your mom... I lost my mom too and she was too young too - 73.
Well, amazingly, I had an MRI scheduled for next Friday evening @ Duke on a 3T. Will have to wait and see what happens.
Ya know, the endocrine doctor never really looked at my neck (now that I think of it). It's not huge - but it is noticeable on the left bottom area of my throat near my collar bone. I mentioned it to the doctors nurse last week, but not sure if they could do anything anyway.
So I stopped the Synthnoid due to the side affects. I wasn't as tired with it (I did notice that I could go through the day without sleeping) but the med made me incredibly tense, irritable, and just not feeling right - so I stopped. I actually felt like I had the quickest temper and no room for patience with my family. Because of that - I got scared so I stopped., I figured it was better to be sleepy then loosing it mentally.
After my last lab work - I guess because my T4 (free direct) didn't go up much, the doctor thought we should try to double it. Is it normal to take a med like Synthoid and one's T4 still not budge much? It was .94 with the meds after 3 months. The lab normal range is .82 - 1.77.
I had a follicular nodule in my neck that was similar - and I had colloid nodules on the other side. But it was up from the collarbone...
I don't take synthroid as I am allergic to the fillers or colors they use - so I use another brand. It takes a while, with any T4 med, to get the dose right to make sure you get the dose enough but not too much - and it can take up to 6-8 weeks to get optimized. If you had those side effects early, your body was probably storing up a lot and you might have gone a tad hyperthyroid...
As for the T4...that is the storage and my doc does not go as much on that as the T3 which is the active part that the thyroid uses - so he looks at the free T3 and T4 (which he likes in the higher part of the ranges for both) but even with my crud docs, I would only get small incremental ups to prevent going crazy as OMG - you just never know how you are going to take up the meds so a double would be weird... it may just take a little to get you over the tipping point. Have you had antibody testing?
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