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Old 06-19-2005, 12:57 PM   #1
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pituitary disorders

Hi Zoe.
Here are some websites I have found to have good info on pituitary disorders.

(For those of you who are not Zoe ... feel free to pitch in with your own suggestions since i think we are both pretty much out of ideas right now. We have both posted all over these boards so you might have seen us before. We both have a bunch of severe but nonspecific symptoms that have totally taken over our lives, including GI problems, skin problems, swelling, unexplainable weight changes, dizziness/fainting, weakness, changes in appearance (face shape, skin color), etc.) I have become a research junkie and my current theory is that I have a pituitary disorder, so here are sites I have found helpful.

Hospital websites:
Massachsetts General Hospital Neuroendocrine Unit
(this is one of my favorite websites for pit. tumor info...tons of stuff here)
[url]www.pituitary.mgh.harvard.edu[/url]

Oregon Health & Science University Pituitary Unit
[url]www.ohsupituitary.com[/url]

NIH Endocrine Center
[url]http://www.niddk.nih.gov/health/endo/endo.htm[/url]

Research Foundations
[url]www.pituitary.org[/url]
[url]www.pituitary.org.uk[/url]

Also the National Library of Medicine database (PubMed) is awesome for researching ANYTHING. I spend a lot of time looking stuff up on PubMed.
[url]http://www.ncbi.nlm.nih.gov/entrez/query.fcgi[/url]

Zoe... doy you have any other suggestion for research websites? I have spent so much time trying to figure this out, there are times I think I should just give up and let my doctors do all the work... that's their JOB, right? (although they haven't been doing such a great job of it lately)

Last edited by Administrator; 06-24-2005 at 03:03 AM. Reason: do not mention websites that may not be posted!

 
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Old 06-19-2005, 01:21 PM   #2
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Re: pituitary disorders -- for zoemarie

hi Sorrell,

thanks for your help.
the difficulty is that your in the us and im in the uk. There is a great organisation in the uk called the pitutary foundation.
What she did tell me after been sent home from endocrinologist with no answers. is that this is extremly commen with pit problems- getting diagnosed is very hard as it is a rare disorder. She told me not to get discouraged and press for answers.

not that many **** i can recommend though.
I don't want to scare you but i have started thinking that if its not a pit problem its probably something to do with the lymphatic sytem. Problems here are not really accounted for in blood results which is why why diagnosis may be such a problem.

Sorrell do you have any of the following?
1. Swollen lymph nodes that sre not painful?
2. rashes or histamine release around body/face
3 strange crusty spots/ rashes
4.skin peeling
5.breathing problems
6 feeling of body heaviness
7. Headaches
8. sleep problems wake feeling worse than when you weent to bed
9. thickening patches on skin
10 coarsening features
11. changes in smell of sweat
12 changes in bones
id be intersted to know which one of these you tick off and seee how much of our stuff matches.

Don't give up i had given up for ages letting the Docs tell me what they wanted i was too sick to care but the boards have encouraged me to get strong and angry and on top of this thing.

zoe x

Last edited by Administrator; 06-24-2005 at 02:49 AM. Reason: inappropriate contact info

 
Old 06-19-2005, 01:41 PM   #3
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Re: pituitary disorders -- for zoemarie

Yeah actually I listed the UK pituitary foundation site on there. I saw that thing on their site about the phone buddies. That's a really good idea.

I do have a lot of the stuff you listed, but not swollen lymph nodes or breathing problems. I have pretty much everything else.

I was told that the three categories of diseases that tend not to show up on standard blood tests, and are hardest to diagnose, are: endocrine, autoimmune, and cancer.

So what direction are you taking now as far as seeing new specialists or having more tests? I am not sure what step I should take next, but maybe when my MRI results come back I'll have a better idea.

 
Old 06-19-2005, 01:44 PM   #4
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Re: pituitary disorders -- for zoemarie

theres some more stuff you should kbow;
My growth hormone was elevated but probably within normal range which is why i got no further testing.

Yes my vision has been going real blurry but not for a while now more it comes with headaches.

the sleep thing is a good indication of pit gh problem

i know the hypothalamus is the part of brain that is on an axis with the pit. maybe there is a problem here? i heard of a syndrome where spinal fluid leaking into that part of the brain can do something to the pit gland flatten it etc i think its called empty sellar syndrome

i hope you get the answers you want from your scan.

From talking to the pit foundation i learnt that gh hormone changes are relatively slow developing. one woman i spoke to had a huge tumor which she had relatively minor symptons from before it was found. my illness attacks me so agressively though. i notice changes over night. and lying down is always worse for me.
then again there are secreting tumors and non secreting ones and size of tumor seems irrelevant to the pain experienced by individual suffers.
thats why im thinking of loooking in other areas such as lymphoma. I suppose i better get another endo opinion too though.

For the eyes get a visual field test done. My eyes would just go funny with the headaches and i would more notice when my vision cleared rather than when it was blurry sort of like a film had been over my eyes. but visual fields were in normal range

Zoe

Last edited by Administrator; 06-24-2005 at 02:54 AM.

 
Old 06-19-2005, 01:58 PM   #5
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Re: pituitary disorders -- for zoemarie

here is my action plan,

1 Getting proper dermatological tests done - skin biopsy hopefully sinus xray etc

2. comfronting my doc with a second opinion from an endo
also serious talk with him about lymphoma.

3.possibly trying to get to see an immunologist

4. have a follow up with neuro not sure what she can do but might talk to her about it being worse lying down maybe she will have some ideas?

Don't stress about getting results of mri results prpare yourself for an answer either way and think of other possibilities too.

Please keep in contact cause i really want o know how its going for you. my best wishes are with you too.

Oh and 5. im drinking beer lots cause the meds they have given don't work and it at least chills me out a bit- theres no reason why we can't have some pleasure at this trying time

il leave you a post on this board if i stumble acrosss any info for you

zoe

 
Old 06-19-2005, 03:25 PM   #6
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Re: pituitary disorders -- for zoemarie

Okay, your plan sounds good. Here's my plan.
1. See a new endo, one who specializes in pituitary disease
2. See an eye doctor, get the visual field test and see what's up with my vision problems
3. Get tested for Lyme disease (simple enough, it's jus a blood test and I can just ask my GP for it)
4. See a gastroenterologist first, and then see what he/she thinks about other specialists I should look into.
5. See a nutritionist (this is not going to diagnose me but my eating habits are beyond screwed up at the moment, I barely eat at all)
6. Hmm I don't like beer but I'll try this...I'll practice yoga a lot. Keeps my mind off this whole thing & maybe it'll help preserve some of my rapidly diminishing muscle strength too.

Thanks so much for "discussing" this stuff with me zoe

Last edited by sorrel2; 06-19-2005 at 03:28 PM.

 
Old 06-20-2005, 12:04 PM   #7
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Re: pituitary disorders -- for zoemarie

Zoe, what tests have you had so far?

 
Old 06-21-2005, 06:10 AM   #8
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sorrell 2 research info

Hi sorrell,

I had a short synasthen test for underactive pit- wrong test

Growth hormone day curve

insulin tolerance test


Are the two tests to have along with pituatary mri


excess growth hormone is known as acromagely

You can probably be pretty sure of it if you have the following


1. increase in width of bone in fingers/ increase in shoe width.
2. enlarged facial bones especially enlarged jaw forehead
3 thickening of skin
4 increase in sweat
5 problems sleeping
6 headaches

If you have all of these its pretty much a definate you have it i geuss. its such a unique disease. i have all of these. Its either this disease or Lyme.



I am so so depressed today.

Love Zoe x

 
Old 06-21-2005, 11:48 AM   #9
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sorrel2 HB User
Re: sorrell 2 research info

I don't think you can diagnose acromegaly on symptoms alone. If your growth hormone or IGF-1 was high maybe you should have a glucose tolerance test (which is different from the insulin tolerance test.) I don't know, but Lyme would not make your shoe size increase or your jaw get bigger! And anyway, isn't Lyme very rare in the UK?

I am having a tough time too, it's like my body's going bezerk on me and no one knows what's going on. Just talked to my endo today and he's ordering more tests. He thinks it might be Cushing's disease.

 
Old 06-21-2005, 12:29 PM   #10
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Re: sorrell 2 research info

I have not had the tests yet for over active pit . Im going to get those two tests done and with any luck another mri.

Then we will see what it is hopefully.

keep me posted.

zoe

 
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