Newly Diagnosed and new forum member

Please join the discussion if you wish to share about the pituitary condition Acromegaly

Re: Newly Diagnosed and new forum member

Postby tabi » Fri Mar 11, 2016 1:02 am

Thanks Pat,

I believe a Macmillan mobile unit is visiting my area next week so am going to pop along and speak to them,i have also found their website to be usefull.

Tabi.
tabi
 
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Re: Newly Diagnosed and new forum member

Postby tabi » Tue May 10, 2016 1:14 am

Hi all,

I visited the macmillan mobile unit and found them very helpfull and they told me i just needed my consultant to write a referal letter.
I saw my Endi consultant today and asked him to refer me for counselling and he was very dismissive and has refused he said he felt the only support i needed was that which i was already receiving from them,i don't feel they are giving me much psychological support although the endocrine specialist nurse i see at my appointments has been great she is always very busy .I actually left the appointement in tears and now feel very depressed about the whole thing,it has totally put me off trying to raise any concerns to the consultant in the future.

tabi.
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Re: Newly Diagnosed and new forum member

Postby Mgh » Wed May 11, 2016 1:28 pm

Tabi, at the very least, that is a shortsighted response from your endocrinologist. How difficult for you to cope with because I imagine you were hanging on to the hope of having access to support very soon. How disappointing. Are they a specialist pituitary endocrinologist? Perhaps your GP might refer you. There is always the fear that it is a budgetary issue.

Have you seen the 'Relationships & Communication with yourself and with others' booklet from the Foundation? One copy is downloadable for free or you can order a hard copy. There are ideas in it that might help you to understand how to deal with self and others. I find the hints on how to look after yourself as well as how to be assertive very useful. I need to return to these hints regularly.

Until you are feeling stronger perhaps it would help to take an assertive, well prepared 'supporter' with you to appointments. I absolutely know how difficult it is to communicate everything you wish to during an appointment and also to respond when misunderstood or fobbed off. It is so upsetting to leave an appointment with the feeling that you have not been heard properly. All pituitary patients need resilience to help them negotiate their diagnosis and uncertain journey. I hope you find some way of educating your endocrinologist that relevant counselling helps develop this. Perhaps the Pituitary Foundation can help you direct that info. (I think it helps us if we accept that Medics will sometimes display ignorance and we need to find a way around it! I familiarised my GP with the relevant testing for thyroid levels in a pituitary patient by photocopying an article written by an endocrinologist in Pituitary Life magazine, sending it to him in advance and the discussing in my next appointment.)
At times it is very difficult to remain in good spirits but we can try by negotiating a hurdle at a time. I hope you find a route around this. What about contacting Macmillan again and asking their advice? Wishing you well.
Mgh
 
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Re: Newly Diagnosed and new forum member

Postby tabi » Fri May 13, 2016 10:36 pm

Thanks Mgh,
I will check out the booklet you recommend.

I'm feeling a bit more positive today,when i went for my appointment i was feeling stressed as i had started the preparation for my colonoscopy,which i've now had .
Not a fun exeperience!

I have discovered that there is a brain tumour support group that meets in my area once a month and is run in partnership with Macmillan so am going to look into that and might approach a gp at my health centre who i have found helpful in the past and is easy to talk to.

Tabi.
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Re: Newly Diagnosed and new forum member

Postby plum » Fri May 20, 2016 12:03 am

Hi Tabi
the response of your endocrinologist is appalling but alas not surprising.
i asked for counselling from when i went into hospital for surgery and the registrar arrogantly said that she had cancelled that request because "they had cured me". well they hadn't because they left a very active piece in my cavernous sinus - could not reach it, not the neurosurgeon's fault. but clearly uncured and even so it's a tough diagnosis and a potentially life-changing
condition. i was fortunate that my GP had organised local counselling for me and then when funding ran out for that the macmillan counsellor was willing to take me on.
i hope that you get a referral via your GP or the brain tumour support group.
good luck
plum
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Re: Newly Diagnosed and new forum member

Postby member_41389 » Sat Jun 18, 2016 2:38 pm

Hi Tabi
In terms of support there is a route to self referral for help through the improved access to psychotherapy programme. In the south west the group is Lift Psychology. You can self refer by registering on their website. I've used the scheme for an 8 week Mindfulness course which I found helpful in managing depression and anxiety. I believe this is a NHS England programme and so the names may vary but the rules stay the same.
I had surgery for my adenoma 2 weeks ago and have not yet been told what the consequences will be, however the growth had involved the carotid so they got less than planned.
Good luck Tim
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Re: Newly Diagnosed and new forum member

Postby tabi » Mon Jun 20, 2016 11:26 pm

Hi Plum/Tim,

The brain tumour support group were very friendly and helpful and offer a range of things,i will definately be going back.

I have also been referred through my local depression and anxiety service to the health psychology service and am on the waiting list to see a health psychologist who provides
support to people with long term health conditions/disabilities.I think the waiting list is quite long though.

I'm on my third injection of Lanreotide now.

Hope you are both keeping as well as you can,

Tabi.
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Re: Newly Diagnosed and new forum member

Postby member_41389 » Sat Jul 09, 2016 7:35 am

Hi Tabi
I hope that you are having some success with the support service.
Unfortunately I've just had another couple of weeks in hospital because of post-operation issues. The approach used by the neurosurgery team has not been very helpful however the medical and endocrinology teams have played a good game and it's beginning to feel like they are getting a handle on things. Unfortunately this means that the neurology team has been involved as well.
It's been said before but everyone's experience round the pituitary problem seems to be different and even the members of the Pituitary Multidisciplinary Team have to be flexible since the number of patients is so small.
Tim
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Re: Newly Diagnosed and new forum member

Postby tabi » Mon Jul 11, 2016 9:01 pm

Hi Tim,
Sorry to hear you've had post-op problems,hope things are improving.

I'm still waiting on the health psychology service but have been back to the brain tumour support group.
I'm waiting on the results of my recent blood tests and for my next meeting with the consultant to see what happens next.

Tabi.
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Re: Newly Diagnosed and new forum member

Postby member_41028 » Tue Apr 24, 2018 7:18 pm

Hi, my tumour was finally diagnosed nearly 7 years ago, after it began to press on the optic nerve. Prior to that I had 9 months of tests and guesses which found nothing. The tumour was operated on and some of it removed. I was diagnosed as having acromegaly but most of my symptoms went as soon as I was put on hydrocortisone. I also need Thyroxine and testosterone replacement. After radiotherapy, which came 6 months later because of other complications, I was put on monthly Lanreotide injections. The growth hormone was stabilised but the mood swings and fatigue were exhausting. I described it as living on a rollercoaster. After 2+ years my consultant finally agreed to try something else and now I take Cabergoline tablets three times a week. It was only 2 a week till last January but the consultant didn't think it was controlling the growth hormone enough. It will be reviewed this summer. I haven't tried Octreotide and, having looked at the side effects, am glad of that. I'm aware that we all react differently to therapies, so you may not have the same experience. Just bear in mind that there are usually some alternatives. Good luck.

Richard
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