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Newly Diagnosed and new forum member

PostPosted: Sun Feb 21, 2016 12:01 am
by tabi
I am new to the forum.

Just before xmas i found out i have a 3cm pituitary adenoma with suprasellar extension and cavernous sinus involvement,i also have been diagnosed with acromegaly.I have been told that because of the cavernous sinus involvement surgery is not possible at the moment.I am waiting to start injections of Lanreotide and would be grateful for any information on what having these are like.

I am finding it hard to get my head around the diagnosis and what it all means,as for over 10 years i have been ill and told it was M.E/Chronic fatique syndrome and many of my weird symptoms have either been dismissed by my GP or treated as pychological as i also have anxiety and depression.
Has any one here had a similar experience of been misdiagnosed?

Re: Newly Diagnosed and new forum member

PostPosted: Mon Feb 22, 2016 9:17 am
by Carl
Hi there, welcome to the forum

I wasn't misdiagnosed, I just happily ignored various unlreated symptoms for quite a while and hadn't thought they could be related (dizziness, loss of muscle, weird vision, loss of body hair) so when I finally went to the doctor, some blood tests soon had me on the path to a diagnosis. I was lucky in that I had the first blood tests in February 2013 and by May 2013, the tumour had been removed. But, although mine was a 3cm macro adenoma, it did not have the extension yours had so was "easy" to remove.

Mine was a non-functioning tumour, so didn't cause Acromegaly (or any of the other 'producing extra' diseases like prolactinoma's) rather it stopped certain things happening, so I am on replacement Hydrocortisone and Testosterone.

So can't really help much in that respect, but because we are on the rarer spectrum for things you can get wrong with you, inevitably this does lead to complications getting it all sorted out. Hopefully you'll start getting sorted soon and feel a bit better.

Cheers, Carl

Re: Newly Diagnosed and new forum member

PostPosted: Tue Feb 23, 2016 1:57 am
by tabi
Hi Carl
Thank you for your welcome.

I am having a test next monday to assess whether Octreotide will be a suitable drug to treat the Acromegaly,so hopefully will get a chance to ask some more questions,the nurse who did my last tests was really nice so i hope i get her again.I am slowly reading my way through all the information on this site and finding it helpful.


Re: Newly Diagnosed and new forum member

PostPosted: Tue Feb 23, 2016 11:29 am
by Mgh
I was diagnosed initially with fibromyalgia. That was a few years before 2011 when eventually a non functioning pituitary macroadenoma was diagnosed. I had many and varied symptoms before problems with my vision showed up in a visual fields test. The visual symptoms had built up over time and at first were not picked up in routine eye tests. An MRI scan showed a substantial pituitary mass with suprasellor expansion bowing the optic chasm. It bulged towards the internal carotid arteries and it also impinged on the hypothalamus. It was removed by transphenoidal surgery due to the optic nerve damage. Some residue remains so I have regular MRI scans to check for regrowth.

I think all pituitary patients have slightly different experiences depending where the tumour touches but we also have much in common. I know a colleague who had a pit tumour removed in his twenties and now in his forties has had no subsequent problems or need to take any replacement hormones. I on the other hand am on hydrocortisone, growth hormone and levothyroxine and although my vision has improved it is 'odd' which may be due to trigiminal nerve damage.

The forum and the Pituitary Foundation has been been very helpful to me. At times it has been the only place I have been able to turn for support through new difficulties. The nurse Alison has been invaluable. Because of its relative rarity it is often not well understood by some of the non specialist medics one meets during ones journey. Another challenge is the coordination of the varied aspects that are spread over a number of medical specialties. If you are lucky you may have a good endocrinology team who will help with this.

Hopefully you will get things sorted out soon. Perhaps it might help you to keep track compiling a diary/file of what is happening, test results, appointments, feedback, advice etc. and your questions as they arise. I kept a daily diary at the beginning but now I write less frequently but I continue to use a Pituitary Patient Folder to keep appointment info, test results, consultants letters etc in.

I hope this helps. All the best.

Re: Newly Diagnosed and new forum member

PostPosted: Wed Feb 24, 2016 2:01 am
by tabi
Thank you Mgh,

I've already started a tumour file.
I think i've been lucky as far as my vision goes as there is no optic nerve compression,i had a visual field test a few weeks ago and havn't heard anything back so am assuming it is ok.

All the best

Re: Newly Diagnosed and new forum member

PostPosted: Wed Feb 24, 2016 9:38 am
by Carl
I've had what feels like dozens of visual field tests done, certainly "a dozen or more". They know right away what the results are, so if they'd have been bad I'm sure they'd have told you. Also I knew something was wrong with my vision, I had odd dark spots of vision appearing....or bits of vision missing. So I think you'd know if your visual fields were being affected.

Re: Newly Diagnosed and new forum member

PostPosted: Thu Feb 25, 2016 1:21 am
by tabi
The main problem i have with my eyes is pain ,particularly in and around my right eye it is also often puffy and swollen.It was this symptom that in a very roundabout way finally lead to the MRI scan,after 2 years and several visits to the hospital eye unit and then to an ear nose and throat consultant,it was he who thought there might be more going on than met the eye and sent me for the scan.

Re: Newly Diagnosed and new forum member

PostPosted: Sun Feb 28, 2016 3:53 pm
by plum

if you are having the lanreotide, then might need to watch your diet - i find that too much (ie normal amounts) of fat leads to diarrhoea. not sure if octreotide does the same.

i also have extension into left cavernous sinus - had surgery but they didn't remove it all - just the part that they could reach. but sometimes they need to start on lanreotide or other to make surgery more easy (reduces swellings etc).

i recommend making contact with macmillan - they might be able to arrange counselling for you. or your GP.
at the time of surgery, i asked the (registrar) neurosurgeon for counselling since i was unable to deal with it all. she arrogantly said that i wouldn't need it since they were going to cure me. ha what did she know? (nothing). anyhow i eventually got in contact with macmillan and it was invaluable.

good luck with it all.
is a horrid and confusing time.


Re: Newly Diagnosed and new forum member

PostPosted: Wed Mar 02, 2016 1:06 am
by tabi
Thanks Plum

I had a small injection of Octreotide yesterday and they took blood samples every half hour for 2 hours so they could test what it does to my GH levels and the nurse is ringing me at the end of the week to see what side effects i've had.They also said they are planning to inject me with Lanreotide for 3 months then do another MRI scan.
I've not had any diarrhoea from the Octreotide so far,just feeling a bit nauseous / woozy and my tummy is very bloated and tender.When they have the blood test results back i am seeing the consultant again.Thanks for the tip about macmillan i had assumed they wouldn't be interested as the tumour is not cancerous.

Re: Newly Diagnosed and new forum member

PostPosted: Tue Mar 08, 2016 9:21 am
by Pat
From another post in 2011 "-the wonderful Macmillan team have taken me under their wing and I am now having weekly sessions with a really nice Macmillan counsellor.
It is helping a lot. They explained that although pituitary tumours are generally benign, there are many problems similar to cancer and on that basis I was taken on. "

Also, never hesitate to contact Alison, our endocrine nurse, who can help with starting treatment like this too.
0117 370 1317 - Mondays 10am to 1pm & 6pm to 9pm plus Thursdays 9am to 1pm