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Post by justaustin on Feb 24, 2009 11:07:11 GMT -5
Thanks for the update. Glad someone gets it. See it is in your head (organic cause that is). Be sure they do the ITT(insulin tolerance test) to stim you for growth hormone and cortisol. Kill two birds with one stone. They need to obtain baseline ACTH,CORTISOL and GH just prior to stim. Have someone drive you. Bring food with you to eat immediately following. FIND OUT their protocol. WHO will be with you at all times during the test. YOU CAN NOT BE LEFT ALONE. Can you get him to test all of you pit hormones and previously suggested labs on previous responses? You are welcome, Laurie Laurie
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Post by bumblinbee on Feb 25, 2009 4:22:20 GMT -5
Hi Laurie
Just waiting for the appointment to come through. I am going into hospital overnight for the ITT and they are going to feed me afterwards.
When I was at the appointment on Saturday, he took some blood but I think that was prob just cortisol, thyroid and IGF-1 again.
I typed out all of my history and symptoms as there is so much and was hard to get it all in to the appointment but forgot to give it to him...damn memory! Do you think I should send him a copy?
He did say that some of my baseline hormones seemed ok although maybe a little low. But I think he is only really concerned with cortisol and GH.
Still shocked, but coming to terms with it now. Still keeping getting daily headaches though even with the topamax so hoping nothing else there to pop...but I suppose it is just natural to worry about that kind of thing!
BB
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Post by justaustin on Feb 25, 2009 10:15:26 GMT -5
I'm glad that you went "private". Poor Mandy is having a dickens of a time getting a doc to listen to her. She doesn't have the $$ to go private and is suffering with your NHS.
Will NHS kick in if the Private doc discovers/diagnoses you with hormonal problem? Will NHS cover cost of say growth hormone if required?
Laurie
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Post by bumblinbee on Feb 25, 2009 11:24:40 GMT -5
I'm glad I went private too, although the endo I saw is also NHS and would have seen me on NHS if my insurance didn't cover the procedure. If I need hormone replacement that will be available on NHS as long as Primary Care Trust agree they hold the purse strings and decide who is allowed what money! With regard to GH, we have certain guidelines that have to be fulfilled, you have to stim to below a certain level and fill out a questionnaire about quality of life. If say for example I need cortisol replacement or thyroid replacement i will then be entitled to free prescriptions. I have been following Mandy's posts and hope that she gets some answers from St Barts. It is awful to be treated so badly by the people that are supposed to be there to help you. If I treated my clients that badly I would never hear the end of it!! (I'm a lawyer but pls don't hold that against me...lol) Thanks for all your help Laurie, it is nice to speak to someone that knows what we are going through. Cheers
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Post by justaustin on Feb 27, 2009 19:26:37 GMT -5
You are welcome. Let us know how you do.
Laurie
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Post by bumblinbee on Apr 9, 2009 6:30:22 GMT -5
Hi All Just a quick update. Well having a 'mare of a time, private insurance have refused to pay they say they don't have a contract with the hospital and also the procedure i was having is only a blood test! So back to NHS, therefore finding it very hard to actually find someone to talk to!! Have only just found out that I am still going into hospital so have spent a few weeks wondering if I was going in on the same day or whether I was going to the back of the queue again so to speak even though I have already been referred on the NHS as well as privately. Well going in next week as planned but have not had a letter confirming it. Only just received letter about consultant's appointment which states that I may have Lymphocytic hypophysitis or I had a tumour, he thinks it was the tumour though. I'll let you know how I get on next week. Hugs BB
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Post by justaustin on Apr 9, 2009 8:36:05 GMT -5
I bet that if you contact this doc at Bart's. He'll be able to help you. Since he was initially hired as "private" and then found out is also contracted with NHS. He might be able to pull some strings to prevent you from going back into the queue. To pursue the testing as originally scheduled. Don't give up.
Laurie
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Post by bumblinbee on Apr 20, 2009 10:00:07 GMT -5
Hi Just a short update as not feeling 100%. Had the Glucagon test last wednesday and had a bad reaction, have been feeling pretty ill since then. Apparently the results were good, cortisol was normal and GH peaked at 21, cut-off is 20. What happens now? Still have the same symptoms, still feel lousy, is it back to square one? BB x
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