Question for Marc

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Question for Marc

Post  Anna's Mom on Thu Jan 14, 2010 9:08 am

Anna is being tested again for acromegaly. She was tested last fall, and she fell in the normal range.

But she saw a new endocrinologist this week who asked more questions, and she has so many symptoms of this now. He pretty much scared me. We will know more tomorrow.

My husband and his mother have a few of the symptoms also.

But if Anna has this type of tumor, wouldn't it have shown up in at least one of her many brain MRI's and CT scans?

Cheryl
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Re: Question for Marc

Post  Guest on Thu Jan 14, 2010 1:05 pm

hi cheryl,

short answer, no despite numerous images, things can be missed. remember, a lot of these docs just review on reports, and old reports of films. a small tumor can be missed. mine is 5mm and glows well on T2 imaging--with or without contrast. mine was missed. the finding of a pineal cyst was missed even with ~12 brain MRIs. hopkins had a dual radiologist/oncologist MD/PhD review my last brain MRI and found it.

acromegaly has a lot of blood work, urinalysis, and diagnostic views on bone structure, but there are two things that need to be specifically looked at:

the kidneys (thin slice CT or high res MRI)
the pituitary (high res MRI, specifically a "Pituitary MRI")

blood work can give some indications, such as an elevated IGF-1, but this can be transient. the liver secretes IGF-1, and with acromegaly it can be increased. a lot of this stuff can be just some elevated results, but not correlate.

you need a pretty good endocrinologist, specifically a neuroendocrinologist the sort through the really tough stuff.

good luck. and sorry, i hope anna isn't facing this.

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Re: Question for Marc

Post  Anna's Mom on Thu Jan 14, 2010 2:54 pm

Anna had two tests in August.

Growth Hormone .29 Range is 0.01 to 3.61

IGF-1 158 Range is 117 - 321

So the endo said these results were within normal range.

The new endo retested on Tuesday, and he said to call him tomorrow for the results.

He also did a different cortisol test Anna hasn't had before. He said it makes no sense that Anna has such low cortisol (both blood and urine) and that she is gaining weight and not losing weight.

Her hands and feet have grown a lot, her teeth are parting, and she has several other symptoms.

I saw shoes in her room today that were 6 1/2 (from college). On Tuesday we got her some boots, and they were size 10. 9's didn't fit.

The endo said he knows Anna's G.P. He said Anna's G.P. is a "country doctor." He said he himself is a "country doctor" when it comes to someone like Anna. He said he rarely sees anyone with Chiari/ICP issues, and that it is out of his league.

I told him Anna has an appointment with a new Chiari doc in Madison, WI next month. He encouraged us to take her. He said she needs to be treated by docs who understand Chiari issues and who have treated many patients like her.

So if the testing doesn't show anything, and knowing she has several symptoms of acromegaly, do I pursue it in Madison with the Chiari doc?

Or do you think we should go to Mayo seek more testing for acromegaly? I don't think we have neuro-endocrinologists in MN.

Thanks!

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Re: Question for Marc

Post  Guest on Thu Jan 14, 2010 3:59 pm

cheryl,

this is in the realm of endcrinology, specifically neuroendocrinolgy when it comes to acromegaly--given anna's very, very complex case.

i'd head to the biggest center i could regarding this.

basic and dumb question, is anna retaining fluid? what the docs need to see is if the bones are getting longer. this is where they need to really check the pituitary. the cortisol stimulation test (forget the exact wording...it has to be done by 8-9am in the morning) can check specifically what's going on in regards to cortisol production.

a detailed look at the pituitary in .5 or 1mm slices should give the docs an idea about the pituitary--probably the quickest way to check for a tumor. despite what a ton of docs will say that a small tumor is just a "ditzel" and nothing to worry about, well that's wrong. it might not be growing or pushing on physical structures, but it can cause absolute havoc on the body's chemistry screwing everything up. a secreting tumor or a tumor blocking pathways on the hippocampus can really cause issues (my problem).

i'd probably just get a call into a neuroendo just to start the process of getting an appointment.

the doc i see at hopkins fits this league (but i know it's pretty far).

gosh, i wish this would let up for you guys.

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Re: Question for Marc

Post  Anna's Mom on Thu Jan 14, 2010 5:08 pm

Yes, she is retaining fluid big time. She is 100 pounds over her normal, pre-sick weight. She is just miserable. And she barely eats.

She started Lasix yesterday. I don't have much hope for it though. She took it in 2006 without any success.

I guess I'll ask if they have neuroendocrinologists in Madison.

She had the cortisol stim test, like you described, and her cortisol was 2, if I remember correctly. 3.5 for urine.

I guess I'll know a little more tomorrow.

Cheryl
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Re: Question for Marc

Post  Anna's Mom on Thu Jan 14, 2010 7:31 pm

I sent you a private message of one doctor that I found in Madison.

I don't want to list it here and have him find my post somehow.

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Re: Question for Marc

Post  Guest on Thu Jan 14, 2010 8:15 pm

got it. check messages please.

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