Lost as to what to do

Lost as to what to do

Postby member_41983 » Sat Sep 26, 2015 4:31 pm

Hello everyone,

I'm new to the site. Saw an Endo 2 years ago who said I have pituitary tumour but it wont kill me so I dont need to worry. Showed me a picture of it on screen and said he was not convinced it was causing all my symptom : migraines, headaches, double vision in left eye, tired, putting on a lot of weight fast, blotchy skin on face, cry all the time, round face, lump on neck and very high blood pressure. I said I thought it would be the cause and he said 'prove that and I will take it out!'. I cant prove it.

My GP has said that the endo closed my file as taking it out is too risky. And that was that. I have been suffering the last two years with the symptoms but my GP says if the Endo thought he could do something he would have done. So GP just sends me home when I go with symptoms. I have had 2 kidney infections recently and I told GP the constant symptoms (with 24 migraines a month) are getting me down and hard to manage so all he would offer me was anti-depressants.

My husband says Im a completely different person and is frustrated that they dont listen to me.

I have gone to PALs to complain but feel so lost as to what i can do. I read on here how people are getting regular tests done to keep an eye on them but I havent had anything like that.

How did you all get your doctor to take your concerns seriously, or to get your Endo to act?!!!

Thank you. Julie
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Re: Lost as to what to do

Postby Carl » Sun Sep 27, 2015 9:36 am

That's a horrible situation to be in Julie, I'm sorry to hear the problems you've been having with your doctors, I can't imagine what it must be like to know something isn't right but not be listened to.

I think a call to the Foundations Endocrine nurse helpline would be in order (details on their website) they could help with some questions to ask. Surely you must be in line for regular checkups to see how the tumour is progressing! Did you have blood tests to see how the tumour was affecting your hormone levels? The round face sounds a bit like Cushings Disease (too much Cortisol), the headaches could be tumour related as could be the vision issues.

You've done the right thing contacting PALs but I would also ask my GP for a referral for a second opinion from a different Endo.

Regards, Carl
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Re: Lost as to what to do

Postby member_42000 » Mon Sep 28, 2015 11:02 am

Hi I've also been symptomatic for about 8 years but really bad the last 2.my go has been sending me away time after time .somedays it's unbearable don't despair though ,I've been insistent and I'm finally getting seen by an endo,keep going I know is difficult .x
All the best sally .
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Re: Lost as to what to do

Postby Mgh » Mon Sep 28, 2015 2:01 pm

Julie you asked how we got our Endo to act. Like you I had symptoms that gradually built up over a number of years, quite similar to yours and I was diagnosed with fibromyalgia among other things. Eventually it was deteriorating vision and falling off my bike frequently for no apparent reason that led me to yet another Optician. He listened very carefully to my symptoms. He did a visual fields test which showed clearly a pattern of peripheral visual defects that indicated a possible pituitary problem but he didn't say at the time. He immediately referred me to a consultant Opthamologist. More eye investigations followed but it was the MRI scan which showed clearly that I had a pituitary macroadenoma. Because it was clearly pressing on the optic nerve I was referred to a neurosurgeon who felt that due to its size and position it should be removed without further delay. I saw an endocrinologist shortly after that but his knowledge was sadly lacking. It was the neurosurgeon who addressed my need for hydrocortisone when I ran into problems about a week after surgery. What then followed was a journey of discovery and I am indebted to the Pituitary Foundation for helping me through the last four years.
My advice would be to speak to Alison, the nurse as advised by Carl.Try to keep a diary of what is happening, your test results and the advice you get. Find the specialist pituitary clinic and consultants in your area. You may need to travel. Prepare and make notes before your appointments. If possible ask someone to accompany you to appointments. Many of us pit patients find that memory and clear thinking sometimes deserts us when most needed!
Remain determined...though this is easier said than done!
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Re: Lost as to what to do

Postby member_41983 » Thu Oct 01, 2015 3:15 pm

Thank you everyone for your comments. I struggle to stay positive and determined but I know I need to because most days I barely exist, not live.
I have asked PALS to investigate the lack of care but also to arrange for me to see a new Endo at a different hospital and I hope they do that for me. Keeping a diary of all my symptoms is a great idea, thank you, I will do that as from today.
I will keep you updated and I hope you all get the support you deserve.
Julie
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