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PostPosted: Thu Aug 18, 2011 11:36 am
by member_33133
Hi there,

Hoping someone out there understands and can relate to this. Before i was diagnosed with a Rathke Cleft Cyst on my Petuitary i had worked for the same company for over 10 years, i actually jacked my job in as for about 3 years i suffered the worst headaches you could ever imagine that would last for over a week at atime where i would be bed bound and not able to look after my children let alone go to work, my work place gave me a really hard time so i left. Few months later after begging my doc to send for MRI to then be turn't away by a neurosurgeon who said i was suffering migraine eventually an MRI was done and the cyst was found. It was removed in 2008 and i now replace all the hormones, i'm trying to get back into work and work as a lunchtime controller at my childs school as a start. I was on Employment Support Allowance as my doctor was signing me off cos i don't really wanna leave the house i'm always tired. ESA have decided my doctors notes means nothing and i've had to go on Jobseekers allowance. I'm devastated that its led to this to be on it in the first place is degrading let alone the fact i don't feel upto working anymore hours a week than i do. Has anyone else been through the same?. I've been on GH injections for 5 months and they've helped alot, as i felt ill, tired, achey and depressed everyday before due to not producing any GH at all. Sorry for the moaning essay lol.. :(

Re: employment/benefits

PostPosted: Thu Aug 18, 2011 4:58 pm
by Sandy
Hi, I take GH too (and am now awaiting more tests to see if there's something else giong on) and have found benefits from it, but it's no way the 100% solution that I had (perhaps naively) hoped for; my Endo accepts that it improves different people to different levels so it's not unusual to still have symptoms - I'm off work too (nearly a year now) and have young children too so can sympathise with your situation, it's not easy is it?
Sorry I can't help directly with your forms but perhaps your Endo team could help? it seems that one of the problems with us pituitary folk is that it's all so jolly complex that your 'average' GP or health worker may not have any experience of what it can mean & the impact it can have, even on treatment. Perhaps you can appeal based on the principle of it being so complex a situation?
Also, there's a lot of appeals & scandal at the mo anyway about the provider of the assessments (ATOS Healthcare) so you may have double luck in an appeal - the system is there to support genuine cases after all!
Good luck, you're not alone in this!
Sandy x

Re: employment/benefits

PostPosted: Thu Aug 18, 2011 11:03 pm
by member_33133
Thanks so much for your reply. I actually did go through an appeal and lost it mainly because my symptoms hadn't worsened or gained another ailment since i first applied. Maybe i should have a word with my doctor and see if there is anything she can do as the thought of doing anymore hours a day terrifies me not only phsically but emotionally i don't feel i have enough confidence to go out and have interviews. I've gained over 5 stone since becoming ill and gone from 9 stone to over 14 stone and i hate being this big i don't feel myself i had all the confidence and used to dance all over the world upto 4 years ago, now i can hardly walk slowly with out my legs hurting. Its really not good. What caused you to need GH? Are you on any other replacement? I had a Rathke Cleft Cyst on my Petuitary and it has stopped working completley, i replace all the hormones.
The GH seems to be really helping and i feel alot happier and have started to lose some weight around my middle.

Thanks again :)

P.s have you ever attended any of the conferences that take place annually? If so did you find them helpful?

Re: employment/benefits

PostPosted: Fri Aug 19, 2011 9:13 am
by Sandy
Sounds sensible to go back to your doc for more help, it certainly can't hurt your case to involve her, perhaps she can liase with your consultant?
Yeah, I've gained weight too - over 4 stone, and around the middle like you - seems that central area is typical of Endo issues, it's not cos we're doing anything wrong!
I get the leg pain too & shortness of breath & fatigue. Again, the absolute lack of confidence & social isolation, are all recognised problems when yr hormones are out of balance - I think my body was messed up in every possible way before the GH treatment began! Altho the doctors are not 100% sure what caused my pit to fail, they think it was autoimmune, most likely after my 2nd pregnancy (my daughter is 4 1/2 now) and possibly because of chicken pox I had a couple of years before that (caught from my son). I asked my Endo doc whether it was worth doing any tests to find out for sure what caused the pit to fail but he says probably not - it won't make any difference to how they treat & I've had an MRI which ruled out any tumour or cyst, so there's no need for an op in my case.
I've not attended any conferences before, I was only diagnosed earlier this year & joined the foundation a few weeks ago, but I'm already feeling much less alone by using this forum :) (Not sure I'm up to it at the mo!) Are you thinking of going? Perhaps anyone else who has been could tell us what they thought?
Hope you have a good day, take care
Sandy x

Re: employment/benefits

PostPosted: Fri Aug 19, 2011 10:58 am
by Bill
Hi Sandy
Your Endo is probably right in not trying to find out what caused your problem. Its extremely doubtful if they could find out through any tests.I would imagine you would get a 2nd MRI in a couple of years just to make sure there is no tumour.This is due to the fact that the tumours are so slow growing they might not show in the first scan but should in the 2nd -if there is one. I am in the same position as you in that my Endo doesn't know what caused mine.I had my initial scan in May last year and will probably be getting another sometime next year.In all probability there still won't be a tumour but obviously they have to be sure.I think our cases are quite rare as most pituitary failures are down to tumours.My Endo spent a whole morning going over my scan etc and was still none the wiser as to what caused it and he is one of the top guys in the country.

Re: employment/benefits

PostPosted: Fri Aug 19, 2011 4:49 pm
by member_33133
Hi Sandy,

Yeah i only joined this group a few weeks ago and love being able to read about and talk to people with the same problems. It is hard when you look in the mirror and hate what you see, but life is for living and i really need to keep telling myself that and try to accept this is me now. Being single doesn't help lol...

I will go back to my doctor and i'll keep you updated.

That is very strange that your pit just failed on you, you must have been struggling to realise why you felt so unwell and things?? With me i had terrible headaches for years so eventually i had an MRI scan.

Are you on Hydro cortisone steroids too? I have to replace everything. Also on HRT as haven't had a natural period for about 8 years i'm only 33, always wanted more children (when the right man finds me) LOL... No chance now i'm sure?? Its what the lack of these hormones can cause aswell ie: Weak bones, thickening of the cervix, also the fact the weight goes mostly round the middle puts us at a higher risk of heart disease and diabetes?? Its quite scarey and frustrating really...

I'm so angry i was left for so many years with no period, excruciating headaches, under active thyroid, visual disturbance (my optic nerves were being stretched up and over the cyst) and my doc jus sent me away with anti biotics, migraine, tension headache diagnosis. Even when my optician wrote to her to request i have an MRI she still didn't. If this had been found sooner i prob wouldn't be over 14 stone now?? Why are they so reluctant to send people for MRI's??? I knw its funding reasons but!!!!!

Yes i was hoping to attend a conference but Sheffield is too far from me really (Berkshire), Waiting for one to take place closer to me.

Have a great day

Hayley :)

Re: employment/benefits

PostPosted: Fri Aug 19, 2011 6:54 pm
by Sandy
Bill -thanks for your comments, I've now started a thread on the thing they did find on my MRI, a split pit stem. Would be really interested in hearing of anyone else with this little oddity!

Hayley - yeah, you're right, I was struggling for ages :( I think it was 18 months or so before I eventually went to the Dr, I just thought I was terribly unfit naturally & tried to ignore it - the accompanying mood changes (worsening depression, lack of confidence, you know the stuff!) meant that I didn't want to go, didn't want to bother him, I just thought I had to try harder at life! But when I finally spoke to the Endo team at Christie hosp, it was like someone turned the light on - I actually cried when the nurse was listing everything I felt, telling me i wasn't going mad, that she understood & hoped to be able to do something about it.
so far I'm only on thyroxine & GH, but as these aren't solving everything the Dr is testing for more. I am v lucky to have periods semi-regularly (there's something I never thought I'd say!) but again the Endo team monitor the reproductive hormones to see if there are any changes. I'm older than you (44) but don't fancy the menopause yet!
(Just a thought, maybe someone can start a dating topic on the forum.... hypotituitary girl seeks acromegaly man to make the perfect balanced partnership :P )
Take care, sleep well & have a lovely weekend

Re: employment/benefits

PostPosted: Wed Nov 07, 2012 10:54 pm
by xCherryx
Hi all,

Not much has changed for me since I was last here, I had another mri but nothing new showing up, just a large bulky pit gland! inflammation. I still feel I have no answers, there's nothing to tell! I have DI and taking desmo tabs! I will be seeing my prof in april next year, feel that is so far away when I am struggling day to day. To top it all I have received my ESA letter and they put me in the work related activity group! I am devastated, I don't sleep at proper times, I have no energy, I feel tearful a lot, I have anger issues etc etc I feel that this is it now, there is no hope and I will end up with no money at all, how can anyone live like that! Don't know what to do, feel useless! totally lost! I am going to appeal although I don't have a clue where to start!


Re: employment/benefits

PostPosted: Mon Jan 14, 2013 8:42 pm
by member_32403
Hi xCherryx
Just joined this forum for the 1st time as I wondered how
everyone else was getting on re ESA, DLA, etc,
I'm pulling my hair out with it all.
I am doing a part time job which is all I can manage but
because I look healthy the job center people think I clearly
AM healthy ! I feel far from it and have no idea what to do.
I feel if I had more energy I could challange their desisions
but just feel like a lorry with a mini engine with just enough
power to breath !!
Glad I have joined the forum though. Can be quite lonely having
a condition few people understand !

Re: employment/benefits

PostPosted: Tue Jan 15, 2013 9:23 pm
by plum
my first ESA medical said i might be able to work within 3 months (i was just out of transsphenoidal surgery) and so they cut my ESA at once. i appealed and it went to tribunal one year later and i won without having to go to court. but then a couple of months later it was stopped becasue of some 365 day limit. (i used to be self employed so that might explain it). they continued to credit me with NI contributions however.
i was then called in for a second medical which i failed.

i have tried to get DLA 4 times and keep failling because, as you said, there is nothing to see. i can walk the required distance and i can cook my own meals. however the fact that i often cannot face talking to people or get out of bed is besides the point. and the fact that i cannot sustain work related activities is apparently irrelevant. also they look at the ESA medical and say that i am clearly fit for work, even though, surely, the criteria are different?????

i am so with you on the feeling that you have to be well enough to challenge their decisions. i was ready to give in from the start as i didn't have the energy to do anything but it was thanks to support from a very very patient friend that i got to tribunal. is there any CAB service near you or a disablity rights group that could help?

i am unable to work. i do some voluntary work from time to time but cannot do it daily becasue i get too tired. just 2 hours on a monday and 2 hours on occasional tuesdays.

good luck and plenty of patience