PLEA FOR HELP - PIT BRAIN TUMOUR - LATEST !
ALL OF THE BELOW COMMUNICATIONS ARE FROM THE PITUITARY FOUNDATION - AND MAY JUST HELP SOMEONE - SOMEWHERE - This is all a bit slap dash as my head not 100% atm - but - it should make some sence !! ;) = TO SOMEONE !! = LOL
Pituitary conditions
Pituitary disorders are considered rare. It is estimated that there are between 50,000 and 70,000 pituitary patients in the United Kingdom, which equates to 0.08% - 0.11% of the population.
The most common problem with the pituitary gland occurs when a benign tumour (used to describe a ‘growth’) also called an adenoma, develops. Pituitary tumours are not 'brain tumours'. The term benign is used by doctors to describe a swelling which is not cancerous.Some pituitary tumours can exist for years without causing symptoms and some will never produce symptoms. Most pituitary tumours occur in people with no family history of pituitary problems and the condition is not usually passed on from generation to generation. Only very occasionally are tumours inherited - for example, in a condition known as multiple endocrine neoplasia (MEN1).
By far the most common type of tumour (about half of all cases) is the ‘non-functioning’ tumour. This is a tumour which doesn’t produce any hormones itself. It can cause headaches and visual problems or it can press on the pituitary gland, causing it to stop producing the required amount of one or more of the pituitary hormones. This effect can also happen by the treatment you are given for a tumour, such as surgery or radiotherapy. Alternatively, your pituitary tumour may begin to generate too much of one or more hormones.
Most common pituitary disorders
- Acromegaly
- Adult Growth Hormone Deficiency
- Craniopharyngioma
- Cushing's Disease
- Diabetes Insipidus
- Hypopituitarism
- Non-functioning tumours
- Prolactinoma
PLEASE - IF YOU ARE SUFFERING LIKE I AM - PLEASE GET IN TOUCH WITH THEM - THEY HAVE BEEN UTTERLY FABULOUS - AND HAVE REALLY HELPED ME ON MY WAY TO GETTING BETTER !!
IT MAY MAKE THINGS EASIER IF YOU START FROM THE BOTTOM AND WORK YOUR WAY UP ! - AS THE LAST EMAIL I HAVE RECIEVED - IS THE FIRST ONE I HAVE POSTED !!
TO GET IN TOUCH WITH THEM -
PAT McBride has been utterly stupendous - and Alison the Endo Nurse so so helpful - and I am so angry at myself for not contacting them sooner ...
DO NOT SUFFER IN SILENCE - TAKE ACTION AND DO SOMETHING NOW ...
***************************************************************************************************************
Hi Abigail
I’m really sorry this has taken longer than I hoped. I had to ask several clinicians because I needed to know how to help you best.
Our medical committee members (including surgeon, psychologist and endocrine) who I asked have made the following comments:
The “storm” video shows what’s happening when she’s in extreme pain, along with the other symptoms that affect her at this time. I agree with the other psychologists and psychiatrists that she says she has seen, that this is a medical problem which requires resolution of the cause, not simply treatment for the symptoms. To have survived for 2 years without adequate help and assistance is extraordinary.
Surgically, it’s not easy to understand more without a view of the scans. At Kings, Nick Thomas is the exceptional senior surgeon, if there's a surgical option, and is easy going sensible and approachable. Needs to push for appropriate endocrine referral – visual fields compromised!
Breaking chunks down on where to start, I suggest:
A. Make appointment with your GP. Tell him/her that you’ve contacted The Pituitary Foundation for help – you may show your GP our committees’ comments. Make a list of your symptoms you gave us to print off and show GP – I’ve tried to put these in order of severity/importance (bold text are symptoms that shouldn’t be ignored) but please do change them if I’m wrong:
1. Loss of peripheral vision (Goldman Fields tests done)
2. Head pain – excruciating (when does this happen, where is pain, how often happens and how long does it last?)
3. Huge weight gain – not through overeating
4. Hypothyroidism
5. Lack of concentration (If I read it hurts and my head ‘slows down’)
6. Short term memory issues - also I have to keep shutting my eyes otherwise it feel like there is too much information going in my head
7. Diverse mood swings (Intense and uncontrollable -can last five minutes or days – taking Diazepam to calm me).
8. Excessive tiredness to point of exhaustion
9. Irregular periods
10. Veins collapse
11. Unexplained bruising
12. Hyperactivity
13. Muscle weakness
14. Bowel irregular
Show your GP the video you showed us (on your phone if possible). Your GP may not have seen you in such pain.
B. Add to your list, the last health professionals you saw and approximate date and what they told you they would do
C. All pituitary patients should have monitoring on a regular basis (6 monthly or annually) and it appears you have not been seen by Kings for two years. This should not have anything to do with funding – it is essential to at least monitor pituitary hormones, in a tertiary centre, appropriate replacements given and certainly your vision, which is compromised.
I am sadly aware in my 20 years of working with patients that somewhat unnecessary psychological signposting is given, instead of appropriate medical help. In a number of cases, as yours, the psychologists have insisted the patient needs medical care and NOT psychological help.
Please do let me know how you are and what’s happening. If you give me your phone number, I will call you later today or tomorrow.
Take care
Pat McBride
Head of Patient and Family Services
Head of Patient and Family Services
0117 370 1315
pat@pituitary.org.uk
The Pituitary Foundation
'Working to Support Pituitary Patients'
Any information provided is meant in general terms. If you are enquiring about a medical issue, we would like to emphasise that all patients are different and you should seek advice from your specialist or GP.
Internet communications may not be secure. The Pituitary Foundation is not responsible for their abuse by third parties nor for any alteration or corruption in transmission.
Company Limited by Guarantee
Registered in England No 3253584
Registered Charity No 1058968
From: abigail collin barry [mailto:abigailcollin@hotmail.com]
Sent: 27 July 2015 15:16
To: Helpline <Helpline@pituitary.org.uk>
Subject: RE: PLEASE HELP ME
Sent: 27 July 2015 15:16
To: Helpline <Helpline@pituitary.org.uk>
Subject: RE: PLEASE HELP ME
Thank you so so much, I will do. Xxx
Sent from my Windows Phone
Sent from my Windows Phone
Hi Abigail
We are still seeking advice but please do call our Endocrine Specialist nurse Alison tonight between 6pm – 9pm on 0117 370 1317
Best wishes
Pat McBride
Head of Patient and Family Services
Head of Patient and Family Services
0117 370 1315
The Pituitary Foundation
'Working to Support Pituitary Patients'
Any information provided is meant in general terms. If you are enquiring about a medical issue, we would like to emphasise that all patients are different and you should seek advice from your specialist or GP.
Internet communications may not be secure. The Pituitary Foundation is not responsible for their abuse by third parties nor for any alteration or corruption in transmission.
Company Limited by Guarantee
Registered in England No 3253584
Registered Charity No 1058968
From: abigail collin barry [mailto:abigailcollin@hotmail.com]
Sent: 24 July 2015 16:14
To: Helpline <Helpline@pituitary.org.uk>
Subject: RE: PLEASE HELP ME
Sent: 24 July 2015 16:14
To: Helpline <Helpline@pituitary.org.uk>
Subject: RE: PLEASE HELP ME
Thank you so much, I have been in bed all day due to headaches n feeling so depressed and then so angry, I cant be around anyone, I can't live like this much more .... Thank you for trying to help.
Sent from my Windows Phone
Sent from my Windows Phone
Hi Abigail
I’m going to see if I can seek medical advice here, and I will get back to you.
Many thanks
Pat McBride
Head of Patient and Family Services
Head of Patient and Family Services
0117 370 1315
The Pituitary Foundation
'Working to Support Pituitary Patients'
Any information provided is meant in general terms. If you are enquiring about a medical issue, we would like to emphasise that all patients are different and you should seek advice from your specialist or GP.
Internet communications may not be secure. The Pituitary Foundation is not responsible for their abuse by third parties nor for any alteration or corruption in transmission.
Company Limited by Guarantee
Registered in England No 3253584
Registered Charity No 1058968
From: abigail collin barry [mailto:abigailcollin@hotmail.com]
Sent: 23 July 2015 22:33
To: Helpline <Helpline@pituitary.org.uk>
Subject: RE: PLEASE HELP ME
Sent: 23 July 2015 22:33
To: Helpline <Helpline@pituitary.org.uk>
Subject: RE: PLEASE HELP ME
Thank you so so much for getting in touch.
I have had Kings do one set of full blood tests and one set of spittle cortisol tests, I was not informed of the results !!
They discharged me saying I would need alot of exploration and they would rather have the GP treat the symptoms rather than the cause.
I have since been down the psych route, MANY TIMES, and each time they say it is medical.
I was told by the Crisis Team consultant after taking an overdose s few weeks ago that she would organise full bloods and MRI and another psych examination.... None of which were done.
I am still waiting to be allocated a support worker, as there is no body available at the moment...
I have since found out I can demand to see a endo or pituitary specialist of my choosing, but as I have already been seen by Kings, my GP is under the illusion I should try Yoga and paracetamol !!!!!!!!!!
Thank you so much for trying to help.
Sent from my Windows Phone
I have had Kings do one set of full blood tests and one set of spittle cortisol tests, I was not informed of the results !!
They discharged me saying I would need alot of exploration and they would rather have the GP treat the symptoms rather than the cause.
I have since been down the psych route, MANY TIMES, and each time they say it is medical.
I was told by the Crisis Team consultant after taking an overdose s few weeks ago that she would organise full bloods and MRI and another psych examination.... None of which were done.
I am still waiting to be allocated a support worker, as there is no body available at the moment...
I have since found out I can demand to see a endo or pituitary specialist of my choosing, but as I have already been seen by Kings, my GP is under the illusion I should try Yoga and paracetamol !!!!!!!!!!
Thank you so much for trying to help.
Sent from my Windows Phone
Dear Abigail
Thank you for getting in touch with us.
Firstly, can you let me know if you are currently being treated for deficient or over active hormones, because of your tumour? And by an endocrinologist who is experienced in pituitary.
I don’t understand about funding not being available – this must be essential for diagnosing your pituitary condition accurately, and ongoing treatment. Has an expert pituitary surgeon seen your MRI scans?
I’ve looked at your video – have you shown your GP this?
Please do get back to me and I will try to help further.
Kind regards
Pat McBride
Head of Patient & Family Services
NORMAL 10 YEAR OLD
NORMAL 10 STONE 27 YEAR OLD !
20 STONE 40 YEAR OLD !
From: abigail collin barry [mailto:abigailcollin@hotmail.com]
Sent: 23 July 2015 11:50
To: Helpline <Helpline@pituitary.org.uk>
Subject: PLEASE HELP ME
Sent: 23 July 2015 11:50
To: Helpline <Helpline@pituitary.org.uk>
Subject: PLEASE HELP ME
PLEASE EXCUSE THIS UNMITIGATED PLEA FOR HELP ....
I HAVE BEEN TOLD THERE IS NO FUNDING IN THE SOUTH EAST TO TREAT MY CONDITION ...
I HAVE BEEN DIAGNOSED VIA NUMEROUS MRI'S WITH A ENLARGED PITUITARY AND A TUMOUR ON THE STALK OF THE PITUITARY GLAND AND I HAVE BEE TOLD BY A PSYCHOLOGIST I HAVE A TRAUMATISED AMYGDALA GLAND ..... 2 YEARS AGO ..... Since then I have been shuvved from Pillar to Post !
I HAVE BEEN TOLD THAT SYMPTOMS WILL BE TREATED NOT THE CAUSE - BECAUSE NO-ONE KNOWS WHAT DAMAGE WILL BE DONE IF THE CAUSE IS TREATED ?
MANY SYMPTOMS ARE VERY VERY SIMILAR TO MENTAL HEALTH PROBLEMS
I KNOW IT IS NOT A MENTAL HEALTH ISSUE !!
I HAVE BEEN TOLD BY PSYCHOLOGISTS AND PSYCHIATRISTS ! ....
Just a few symptoms include ( in no order ) : HUGE WEIGHT GAIN, COLLAPSING VEINS, HYPOTHYROIDISM, BORDERLINE PCOS, MASSIVE MOOD SWINGS ( TOTALLY UNCONTROLLABLE and INTENCE - Can last five minutes or days - NEEDS DIAZEPAM TO CALM ME DOWN OTHERWISE I WILL CARRY ON - CANT CALM DOWN MYSELF AT ALL ) BRUISEING FOR NO REASON, EXCESSIVE TIREDNESS, HYPERACTIVE, MUSCLE WEAKNESS, IRREGULAR PERIODS, CONSTIPATION, EXTREME DIARRHOEA, LOSS OF PERIPHERAL VISION ( Goldman Fields tests done ) LACK OF CONCENTRATION ( If I read it HURTS AND MY HEAD SLOWS DOWN ) - HUGE MEMORY PROBLEMS - also I have to keep shutting my eyes otherwise it feel like there is too much information going in my head ...
I ALSO HAVE MY HEAD SHUT DOWN - NOT DUE TO PANIC ATTACK OR SOCIAL ANXIETY MAYBE JUST BECAUSE I HAVE BEEN TO BUSY ( Like go out for coffee and pop to a shop on way home !!!!! = THATS BUSY ) - MY HEAD SLOWS AND EVENTUALLY STOPS - SO I FALL ASLEEP - During this time I stutter and I cant get words I know to come out of my mouth, - I cant think - and the pain in my head, behind the eyes ( and travelling to the back of my head ) is IMMENCE - I have captured one of these 'Storms' on Camera - Please see link https://www.youtube.com/watch?v=G2uwxPQWMlI
Normally I have no trouble talking and can talk for England ! - BUT - When these 'Storms' Happen - that's it - EVERYTHING STOPS.
I AM NOW UNABLE TO LIVE A LIFE - IM AT HOME AND I TRY TO BE POSITIVE AND HAPPY - BUT I HATE MY LIFE - I CANT GO OUT WITHOUT SOMEONE - INCASE I GET ANGRY ( another side effect ) OR INCASE I GO GIDDY AND CANT STAND UP - I AM A BURDEN TO MY FAMILY AND NEED HELP
- I TRIED TO COMMIT SUICIDE A FEW WEEKS AGO - I AM DESPERATE FOR HELP
I HAVE NOW BEEN TOLD I NEED FUNDING AS THERE IS NO-ONE 'IN AREA' WHO WILL OR CAN TREAT ME ?? A PSYCHOLOGIST IS TRYING TO GET THIS FUNDING - ( I HAVE SEEN PSYCHOLOGISTS AND PSYCHIATRISTS WHO BOTH SAY IT IS A MEDICAL MATTER ALTHOUGH SIGNS ARE THERE FOR BIPOLAR - BUT IT IS NOT BIPOLAR ! - I HAVE ALSO GONE COUNCILLING - ( I talk to anyone and this isn't and issue - but have done what the doctors tell me - CBT Does NOT work - as my Mood swings are UNCONTROLLABLE and its as if I have a duel personality - like Jekyll and Hyde ) - I CANT EVEN BE LEFT ALONE WITH MY OWN CHILDREN IN CASE I OVER REACT AND GET ANGRY - AS I AM TOTALLY UNSURE WHAT WOULD HAPPEN - I DONT AND NEVER WANT TO HURT ANYONE - BUT IF SOMEONE COMES TOWARDS ME - I REACT ...
EVERYTHING IS UNINTENTIONAL - I DONT MEAN TO SAY OR DO ANYTHING BAD - BUT IT HAPPENS - AND WHEN I CANT THINK - ALL I CAN DO - OUT OF FRUSTRATION I BELIEVE - IS SWEAR .... WORDS THAT I NEVER EVER WOULD GENERALLY USE ... AND ANYWHERE IN FRONT OF ANYONE -
I AM NOT DEPRESSED - BUT GET TERRIBLY TERRIBLY SUICIDAL - I OVER REACT AND AM PARANOID AND THINK EVERYONE HATES ME - THEN IM FINE AGAIN AND KNOW THIS IS NOT THE CASE !!!
PLEASE PLEASE CAN YOU POINT ME IN SOME SORT OF DIRECTION
I AM DESPERATE
MANY THANKS
ABIGAIL COLLIN-BARRY
I HAVE BEEN TOLD THERE IS NO FUNDING IN THE SOUTH EAST TO TREAT MY CONDITION ...
I HAVE BEEN DIAGNOSED VIA NUMEROUS MRI'S WITH A ENLARGED PITUITARY AND A TUMOUR ON THE STALK OF THE PITUITARY GLAND AND I HAVE BEE TOLD BY A PSYCHOLOGIST I HAVE A TRAUMATISED AMYGDALA GLAND ..... 2 YEARS AGO ..... Since then I have been shuvved from Pillar to Post !
I HAVE BEEN TOLD THAT SYMPTOMS WILL BE TREATED NOT THE CAUSE - BECAUSE NO-ONE KNOWS WHAT DAMAGE WILL BE DONE IF THE CAUSE IS TREATED ?
MANY SYMPTOMS ARE VERY VERY SIMILAR TO MENTAL HEALTH PROBLEMS
I KNOW IT IS NOT A MENTAL HEALTH ISSUE !!
I HAVE BEEN TOLD BY PSYCHOLOGISTS AND PSYCHIATRISTS ! ....
Just a few symptoms include ( in no order ) : HUGE WEIGHT GAIN, COLLAPSING VEINS, HYPOTHYROIDISM, BORDERLINE PCOS, MASSIVE MOOD SWINGS ( TOTALLY UNCONTROLLABLE and INTENCE - Can last five minutes or days - NEEDS DIAZEPAM TO CALM ME DOWN OTHERWISE I WILL CARRY ON - CANT CALM DOWN MYSELF AT ALL ) BRUISEING FOR NO REASON, EXCESSIVE TIREDNESS, HYPERACTIVE, MUSCLE WEAKNESS, IRREGULAR PERIODS, CONSTIPATION, EXTREME DIARRHOEA, LOSS OF PERIPHERAL VISION ( Goldman Fields tests done ) LACK OF CONCENTRATION ( If I read it HURTS AND MY HEAD SLOWS DOWN ) - HUGE MEMORY PROBLEMS - also I have to keep shutting my eyes otherwise it feel like there is too much information going in my head ...
I ALSO HAVE MY HEAD SHUT DOWN - NOT DUE TO PANIC ATTACK OR SOCIAL ANXIETY MAYBE JUST BECAUSE I HAVE BEEN TO BUSY ( Like go out for coffee and pop to a shop on way home !!!!! = THATS BUSY ) - MY HEAD SLOWS AND EVENTUALLY STOPS - SO I FALL ASLEEP - During this time I stutter and I cant get words I know to come out of my mouth, - I cant think - and the pain in my head, behind the eyes ( and travelling to the back of my head ) is IMMENCE - I have captured one of these 'Storms' on Camera - Please see link https://www.youtube.com/watch?v=G2uwxPQWMlI
Normally I have no trouble talking and can talk for England ! - BUT - When these 'Storms' Happen - that's it - EVERYTHING STOPS.
I AM NOW UNABLE TO LIVE A LIFE - IM AT HOME AND I TRY TO BE POSITIVE AND HAPPY - BUT I HATE MY LIFE - I CANT GO OUT WITHOUT SOMEONE - INCASE I GET ANGRY ( another side effect ) OR INCASE I GO GIDDY AND CANT STAND UP - I AM A BURDEN TO MY FAMILY AND NEED HELP
- I TRIED TO COMMIT SUICIDE A FEW WEEKS AGO - I AM DESPERATE FOR HELP
I HAVE NOW BEEN TOLD I NEED FUNDING AS THERE IS NO-ONE 'IN AREA' WHO WILL OR CAN TREAT ME ?? A PSYCHOLOGIST IS TRYING TO GET THIS FUNDING - ( I HAVE SEEN PSYCHOLOGISTS AND PSYCHIATRISTS WHO BOTH SAY IT IS A MEDICAL MATTER ALTHOUGH SIGNS ARE THERE FOR BIPOLAR - BUT IT IS NOT BIPOLAR ! - I HAVE ALSO GONE COUNCILLING - ( I talk to anyone and this isn't and issue - but have done what the doctors tell me - CBT Does NOT work - as my Mood swings are UNCONTROLLABLE and its as if I have a duel personality - like Jekyll and Hyde ) - I CANT EVEN BE LEFT ALONE WITH MY OWN CHILDREN IN CASE I OVER REACT AND GET ANGRY - AS I AM TOTALLY UNSURE WHAT WOULD HAPPEN - I DONT AND NEVER WANT TO HURT ANYONE - BUT IF SOMEONE COMES TOWARDS ME - I REACT ...
EVERYTHING IS UNINTENTIONAL - I DONT MEAN TO SAY OR DO ANYTHING BAD - BUT IT HAPPENS - AND WHEN I CANT THINK - ALL I CAN DO - OUT OF FRUSTRATION I BELIEVE - IS SWEAR .... WORDS THAT I NEVER EVER WOULD GENERALLY USE ... AND ANYWHERE IN FRONT OF ANYONE -
I AM NOT DEPRESSED - BUT GET TERRIBLY TERRIBLY SUICIDAL - I OVER REACT AND AM PARANOID AND THINK EVERYONE HATES ME - THEN IM FINE AGAIN AND KNOW THIS IS NOT THE CASE !!!
PLEASE PLEASE CAN YOU POINT ME IN SOME SORT OF DIRECTION
I AM DESPERATE
MANY THANKS
ABIGAIL COLLIN-BARRY
Sent from Windows Mail
Non-functioning tumour
By far the most common type of tumour of the pituitary gland (about half of all cases) is the 'non-functioning' tumour. This is a tumour which does not produce any hormones itself.
It can cause headaches and visual problems or it can press on the pituitary gland, causing it to stop producing the required amount of one or more of the pituitary hormones, leading to hypopituitarism.Typical symptoms ( I SUFFER ALL OF THE BELOW ! )
- excessive tiredness and decreased energy
- muscle weakness
- reduced body hair
- irregular periods (Oligomenorrhoea) or loss of normal menstrual function (Amenorrhoea) - females
- decrease in sex drive
- weight gain
- increased sensitivity to cold
- constipation
- dry skin
- pale appearance
- low blood pressure and dizziness on standing (postural hypotension)
- headaches
- vision disturbance
DO SOMETHING ABOUT IT !!! XXX
No comments:
Post a Comment