Recovering from surgery

[Jane62]

Hello everyone
I am new to the world of a pituitary problem.
My story is this. In September of this year I went to the doctors after suffering a severe headache for two weeks. I was told it was a migraine attack. Around a week later I went to the opticians as I noticed my eyes had become blurry. Had all the relevant optical tests done and this showed that my eyesight had changed by 0.50 In both eyes since the end of May this year.
I was referred to an ophthalmologist who did more tests and noticed that after a more extensive field Vision test that my field Vision In both eyes was pretty much non existent.
I was referred for an MRI and the ophthalmologist called me to say that I needed to see the endocrine team. It was there that I was told I had a tumour the size of a golf ball and that it would need surgery. I was put on Carbergoline as my prolactin levels were slightly raised but not to the extent of having a prolactinoma. Surgery was arranged at a different hospital and carried out successfully,
Whilst there I was put on hydrocortisone. I am not sure what type of pituitary condition I have yet as they are still doing tests.
On Monday I got a call from the endocrine team where the surgery was carried out to be told to stop taking the hydrocortisone which I duly did. This Wednesday I was so ill I ended up back in hospital on fluids and back on hydrocortisone.
How long does it take to find out what type of problem I have and what, if any further tests will I be expecting?
Jane

[Carl]

That's a difficult question really, as Pituitary conditions are so individual. I know when I had my tumour removed last year, they were pretty sure what type it was before the removed it, and that was confirmed when they removed it. I think they had it sussed pretty much from the various blood tests they had done plus the MRI. I don't now make enough of my own Cortisol so am on Hydrocortisone (HC) permanently (mine was a non-functioning macro-adenoma), but I was on raised levels of HC for quite a while whilst I was recovering from the operation, so I'm a bit surprised they took you off it.

So not really sure what you would expect in the way of tests, until they give you a firm diagnosis.....I'm a bit surprised they don't know already having removed the tumour. Have a chat to your Endocrinologist and raise any concerns you have, see what she/he says?

[Jane62]

Hi Carl
Thanks for your reply.
Sorry I mis wrote the last few sentences of my post.
You are correct in saying I should of been told what type of pituitary problem I have and like yourself it was - non functioning Macroadenoma.
What I think I was trying to ask is, what sort of tests will I be looking to have in the near future.
Thanks again.
Jane

[Carl]

For me, the key test was a 'short syncacthen' test - see http://www.patient.co.uk/health/synacthen-test

It measured what level of Cortisol I produced. The reason I was first diagnosed was when I had a blood test last February which showed I had very low Cortisol levels....many blood tests and an MRI test later they found the tumour and removed it. Once that was done, I then had many more blood tests to understand what levels of hormones I was producing once the tumour was removed. As I understand it, this is very personal to each individual.....your pituitary gland can recover completely from having the tumour removed, or you can be left with various hormones not as they should be. Pre-the operation, I had about 4 hormones out of balance, Cortisol, Testosterone, Thyroid and [another one which I forget]. After the operation I still had very low Cortisol and almost zero Testosterone. I will now need to take these hormones to replace those I don't make, Hydrocortisone to replace the Cortisol and an injection every 10-12 weeks to replace the Testo. The other hormones sorted themselves out on their own thankfully.

The Synacthen test measures what level of Cortisol you can produce in response to a stress test, in my case not enough I know a lack of Cortisol was enough to put me back in hospital after my initial stay for the operation....

Not sure whether you will get the Synacthen test, but certainly look forward to many, many, blood tests

Carl.

[member_31784]

Hi Jane
Hope your beginning to feel better. Hormones are complicated little ****** and it can take a while to sort them out and reach a balance. Sometimes after a while they come back, my cortisol did after about 2 years. After my first op it took 9 months to realise I needed growth hormone . Dont assume the dose you start on for any hormones supplemented will always stay the same and nag your endo if you keep feeling rotten.
All the best Karen

[Jane62]

Thanks again for the reply Carl.
I will keep you informed of any tests that my endocrine team propose.
I have my follow up with the nuero surgeon at Charing Cross on the 17th December

I have my first out patient appointment for this Thursday.
Thanks for the reply Karen.

[Pat]

We have a post surgery fact sheet at http://www.pituitary.org.uk/information/publications/essential-free-publications/post-pituitary-surgery-fact-sheet/ with lots of useful information

[Carl]

Thanks for this Pat....if only I'd read this before I had my surgery. Such a useful document!

As I read through it I found myself saying "yes" & "tick" to so many of the items, certainly brings all the memories back.

[Jane62]

Thank you Pat for this information.
I have had a call today saying cancel outpatients appointment until I have had an insulin tolerance test carried out. This is going to be on the 8th January.
I also was told to reduce the steroids to 15 a day from 20 and depending on how that goes in the New Year to reduce to 10 if I feel ok that is.
The consultant said he would sort out all necessary appointments and cancellations for me. Such a lovely man

[member_38020]

Hi Jane,

I hope the insulin test went ok. A lot of people feel quite sick during it. Like you, I had a non-functioning macroadenoma removed a couple of years back. Is it correct that the only replacement hormone you are taking is hydrocortisone? The endocrine tests you will have for the rest of your life. They are at a greater frequency post surgery. I've read studies in the Endo Bible, a USA online publication for endocrinologists that state the first hormone to fail is usually human growth hormone. They run the test for this at the same time as the insulin or glucagon test for cortisol response.