Newly diagnosed....

Newly diagnosed....

Postby member_41343 » Fri Sep 12, 2014 11:03 am

Good morning (just...)

I was diagnosed just 2 weeks ago with secondary adrenal insufficiency.....but I can't get my head around it at all; I believe that I'm to have an MRI soon - no date at the moment :(. I understand that they'll be looking floor a tumour on my pituitary gland.......but that it isn't necessarily a tumour causing this? If not, will it be another round of tests?? Or will I just be treated as I am at present? ( hydrocortisone pills and the constant worry of having to inject myself??)

Is this tearfullness normal? Or the fogginess? (New word!!)

I just don't recognise myself at the moment

Thank you, Sian x
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Re: Newly diagnosed....

Postby plum » Fri Sep 12, 2014 7:21 pm

hi sian
and sorry to say 'welcome to the club'
fogginess ? yes, and you'll probably find that it comes and goes without warning.
it might settle down and get less severe once they sort you out.
this is the really horrid part of the entire process - the initial diagnosis that there is something wrong and the wait for them to work out what the best treatment is. and the tweaking and testing until they get the doses sorted out.
but hang on in there.
no doubt you are reading up plenty online. my very wise GP pointed out to me that people without problems tend not to write their stories online. ie don't get too panicky / frightened about what is likely to happen. it may or may not be as bad as the stuff you read online. i know from experience that that is easier said than done.
we are all different and everyone seems to react in different ways.
if you have any other questions etc then do raise them on this forum. although it is not a very busy place, people do respond!
wishing you all the very best meanwhile.
plum
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Re: Newly diagnosed....

Postby Carl » Sat Sep 13, 2014 9:32 am

"we are all different and everyone seems to react in different ways"

Absolutely agree with this statement (and yes to the fogginess unfortunately). I had my pituitary tumour removed last May (2013) and I take Hydrocortisone and Testosterone replacements and I feel SO much better than I did before.....but you do see some real horror stories on-line because it is really difficult to know a) exactly what the cause is before the 'proper' diagnosis and b) exactly how you will outcome once you've had the treatment.

So all you can do is hang in there for now, as Plum said ask any questions that occur, and trust the experts you are dealing with will be able to sort you out. For me it was only about 10 days between getting an MRI scan to tumour removal, so once things start moving it should be long (although that might be both scary and comforting!)

I do agree about the injecting thing, and I have a kit here just in case, but I figure it is a necessary evil and something I may only have to do a couple of times in my lifetime.

Stay strong, and I know how difficult it is to do, easier to say.

Cheers, Carl
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Re: Newly diagnosed....

Postby Pat » Sat Sep 13, 2014 11:28 am

Hi Sian

if you want to order our hydrocortisone free resources, these are at [url][/url]http://www.pituitary.org.uk/catalog/essential-free-resources/c-23/c-81[url]
The Patient Care Card can be very reassuring to carry, plus advice about taking and increasing hydrocortisone if unwell. There's a lot for you to take in right now and let us know how you get on.

Pat
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Re: Newly diagnosed....

Postby member_31784 » Sun Sep 14, 2014 10:49 am

Hi Sian

sorry to here about your problem. I remember my diagnosis well and fogginess was certainly part of it. My diagnosis was very quick and as well as floods of tears I remember going for a very long walk on my own to try and come to terms, I also remember emotions all over the place, happy, sad, sudden flare ups of anger from nowhere, my poor family.

I found this forum and local support groups very helpful and informative. Have even used literature to give to nurses at times, but its true most people post when there's a query or problem so you can sometimes feel a little down after reading some stories but generally its helpful.

Good luck
Kare
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