Starting on growth hormone

Re: Starting on growth hormone

Postby member_37074 » Tue Apr 17, 2012 5:55 pm

I have just heard from my GP that the PCT have approved my funding for growth hormone, now i believe they have to write to preston and the endocrine nurse will give me an appointment in 2-3 weeks time hopefully.

because preston is such a long way away my gp is putting me under the care of a nurse for people with long term health conditions, as I have a number of condditions to deal with all long term and serious, i am finding it a bit overwhelming just now and it is affecting my recurrent depressive disorder.

i have other med changes to do because of my fibromyalgia so it is all happening after months and months of waiting.

my gp has never prescribed human growth hormone before nor has anyone else in the practice so they are understandably cautious.

tomorrow i have to go to Preston to have a cortisol day curve done.
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Re: Starting on growth hormone

Postby plum » Wed Apr 18, 2012 5:10 pm

hi
hope that all went well with your cortisol day curve.
best wishes
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Re: Starting on growth hormone

Postby buddyboy » Thu Apr 19, 2012 10:19 am

Hi member_37074 and others,
new to this forum so hope this post is OK. I am a 60 year old and have Hypopituitarism and had nearly zero growth hormone, low other hormones, and felt terrible. My original endocrinologist said that NHS buckinghamshire (where I live) do not provide growth hormone (despite NICE guidelines saying they must provide it if the conditions are met) but after pushing and about 6 months delay, I finally got it approved. I started on Genotropin two and a half weeks ago. This is a subcutaneous injection (tiny needle and you can even "hide" it on my device) and it is really easy to do. The Genotropin once mixed, must be kept refrigerated. Initial result is I that I do feel somewhat better already. I have a bit more energy, and generally feel more positive. I currently have some muscle aches and joint pains which I am attributing to the Genotropin. If you look at the genotropin.com website at the safety profile and side effects, these side effects are noted, but they (quote) "do not generally last long" (days, weeks, months I wonder? Anyone else experienced this?). I have noticed similar side effects reported for growth hormone prescriptions other than Genotropin. Despite the current discomfort, I am optimistic this treatment will help me a lot.
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Re: Starting on growth hormone

Postby Bill » Thu Apr 19, 2012 11:58 am

Yes the joint pain seems to be quite a common side effect of GH in general. I am on Saizen and suffer from this.
There seems to be a lot of delays down there in England with getting the OK to start GH, haven't seen that problem up here in Scotland.
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Re: Starting on growth hormone

Postby MisterR » Sat May 12, 2012 11:47 am

Hi all

I am a brand new on here! I am just about to start on Growth Hormone and wanted to hear some stories/personal experiences from you guys. From what I have read on here I shouldn't be getting too excited about GH, a lot of people are saying that its not having much affect on their life! I only seem to be seeing negative feedback, I am looking for hope :-) I was so much looking forward to starting the treatment but don't want to be too disappointed!

How did you feel (symptoms) before you started your treatment? How long did it take to work? What have you seen improve the most?

It will be great to hear from you.

Thanks.
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Re: Starting on growth hormone

Postby Pat » Tue May 15, 2012 1:38 pm

GH certainly works for me and have been taking it for 16 years.
It did take about 3 months to notice the benefits but everyone is different in terms of how long it can take.

The most obvious early benefit I felt was getting out of bed one morning with that positive feeling of looking forward to the day. My body shape changed (improved) around the middle and I had more energy, which helped me to walk and exercise and not want to fall asleep every afternoon. It can help to improve sleep patterns. I take my dose at 9pm each night.

Overall, it makes me feel balanced and close to how I felt before pituitary
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Re: Starting on growth hormone

Postby MisterR » Thu May 17, 2012 8:44 am

Hi

Thanks for your reply. thats positive to hear Pat, it must be good for you if you have been on it for 16 years!!! I guess I will have to be patient then initially if it took three months but I guess thats not that long in the grand scheme of things!
I am really pleased its working for you and that you are more balanced.

What other symptoms did you have before taking it, any headaches, head pressure, dizziness? in addition to the tiredness and mood changes? If you had any of these did it improve them too? I am putting my other symptoms down to the fact I have been suffering without any GH for so long it has caused a load of other symptoms too, I mean if you feel tired all the time and carry on surely you are going to feel dizzy and stuff! I just hope it works for me too.

Good luck.
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Re: Starting on growth hormone

Postby member_37074 » Thu May 17, 2012 7:44 pm

I got started on growth hormone yesterday, I travelled down to Preston to spend time with the endocrine nurse and learn how to administer it.

I really should not have worried the injection itself is totally painless i am so relieved as i was worried about it. It is more painful when i have to test my fingers for blood sugar as part of my diabetes monitoring.

the nurse was excellent she spent a whole hour with me going over everything, like others she has said it is not a wonder drug but it may well improve my quality of life which would not be hard.

I am virtually bed bound now relying on carers 3 times a day and my mum coming to give me my tea, my asthma has had me in hospital for the last 3 weeks and my fibromyalgia is really bad just now. I have DLA at the highest rates

my stress now is in the changing from incapacity benefit to ESA a forced changed by the job centre i have been found fit for work, which all professionals involved in my care cannot believe. of course my social worker is helping me appeal but it is very stressful to get letters and phone calls from job centre suggesting my illness has just come on and may be temporary. In the last year i have been in hospital more than i have been at home it is a joke

best wishes to all especially those starting the growth hormone journey

poppy x
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Re: Starting on growth hormone

Postby Pat » Fri May 18, 2012 8:16 am

What other symptoms did you have before taking it, any headaches, head pressure, dizziness? in addition to the tiredness and mood changes? If you had any of these did it improve them too? I am putting my other symptoms down to the fact I have been suffering without any GH for so long it has caused a load of other symptoms too, I mean if you feel tired all the time and carry on surely you are going to feel dizzy and stuff! I just hope it works for me too.


I did feel dizzy at times but put it down to as you say trying to carry on. The best way I can describe GH benefit is a pair of scales (old fashioned type) balancing in the middle.
When starting and throughout taking GH, your other hormones will be monitored to make sure these are optimum.
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Re: Starting on growth hormone

Postby jemima » Fri May 18, 2012 11:11 pm

Hi

Hope you have got somewhere with this by now?

I've been on gh from nordicare for six years and it has helped so much, so its well worth pursuing if you haven't got it yet.

As for another group if you search pituitary on Facebook then there are lots of chat groups which are used by quite a lot of people which are good if no one has replied here :)

J
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