Starting on growth hormone

Starting on growth hormone

Postby member_37074 » Sun Mar 04, 2012 1:33 am

hello

i have not posted for a while, i have been very ill, in intensive care this time.

eventually got appointment to see Dr Howell at Preston, i had waited a long time and my first appointment i went end november and he wasn't there i got a nice dr but had no clue what to do with me except getting loads of blood tests done.

so in January i got another appointment this time i rang his secretary to check he would be there and if he would see me, so i saw him and he was so helpful and positive actually listened to me for the first time and let me list all my odd symptoms, Anyway he doubled my levothyroxine and hydrocortisone as the levels were dangerously low and that was why i kept getting ill. he says he thinks i have fibromyalgia and ordered an arginine stimulation test, for some reason the insulin tolerance test was not done as they said there was a risk of me having seizure .

the arginine test confirmed i am low in growth hormone with the first 3 resultsand the baseline being undetectable, it was the endocrine nurse who phoned me , she explained the next step is the quality of life assessment which i will pass easily as i am virtually housebound at the moment and cannot look after myself,

I wonder how long it takes from now to getting the injection, the nurse will teach me but obviously she is over 50 miles away i dont see Dr howell until 28th . she said it was only a month but i told her a month is a lonf time whe n you feel ao ill.

last question are the injection devices easy to use, i have a nneedle phobia.
thanks poppy ;)

forgot to say i am also vitamin D deficient so am on meds for that and asthma and depression
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Re: Starting on growth hormone

Postby Bill » Sun Mar 04, 2012 1:29 pm

Hi Poppy
In answer to your question about the needle devices they all seem pretty easy to use.
The one I use is the Saizen Easypod you can vview videos of it on the Saizen website and also on You Tube.I find it very easy to use as it works off batteries and has a built in screen which guides you through the whole process it is also possible to adjust all the settings through the menu - such as needle speed and depth etc.
You also get a DVD guide, extra batteries and a backpack with built in coolbag in case you have to travel with it. The GH can come ready mixed or you can choose to mix it yourself.A phial of Saizen GH does me 19 days on a 0.4mg dose. You will probably be on a lesser dose so obviously a phial would last longer than that.
Saizen also offer excellent backup with a 24/7 helpline.
Your Endo nurse should be able to show you the range of devices available to you.
My Endo nurse came to my home for my first injection and normally would visit another couple of times however I found the Easypod so easy to use that further visits were not necessary.
I am sure other people here will tell you about their devices.
I am not a fan of needles so was pretty apprehensive to begin with but the needles are so fine that sometimes I find it hard to believe that it has actually worked.
Good luck with your GH :D
Bill
 
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Re: Starting on growth hormone

Postby member_37074 » Sun Mar 04, 2012 9:45 pm

thanks for that Bill it was very useful.

my endocrine nurse is in Preston and i live in Kendal so i don't think i will get any home visits.

as i am on income support i am going to try and find out about travel costs to Preston as my parents find the petrol expensive, twice we have been down for 9 am cortisol levels as the person forgot to put the sample on ice.

then we have appointments for tests and the nurse and the consultant of course.

i am impatient to get going as reading the list of symptoms is just me and i know it will improve my quality of life which is zero at present.

thanks poppy
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Re: Starting on growth hormone

Postby member_37074 » Fri Mar 16, 2012 9:11 pm

I am still no further forward in to starting the growth hormone injections.

the consultant has written to my GP and the Gp has not replied, we need to work out who is going to do my prescriptions, hopefully my gp as i don't want to have to travel to Preston every time i need a prescription.

I am anxious about beginning the process plus feeling pretty ill i ticked yes to every question on the quality of life questionaire and my test results reveal a severe deficiency so it is just a matter of time until we get started hopefully.

i am also struggling with a new diagnosis of fibromyalgia and severe vitamin D deficiency and my ongoing pituitary failure.

i find it overwhelming and never ending, i am wondering when i can get a break.

this does not seem like a forum that many people use, is there anywhere else reliable i can go to for advice?
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Re: Starting on growth hormone

Postby member_31762 » Tue Mar 20, 2012 5:21 pm

Hello

I too have just had an arginine test which showed almost no GH production. I'm only seeing my consultant in a month but I'm not sure how long after that it will take to get the GH. I was wondering if you'd now started your GH and how its made you feel? I can't wait to get going as the quality of life questionnaire basically describes how I feel.

Your feedback would be great.

Thanks, Zöe
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Re: Starting on growth hormone

Postby Bill » Sun Mar 25, 2012 6:56 pm

I have been on GH now for 18 months now and am afraid that I don't really notice much difference in the way I feel. Still feel really tired most of the time and have no energy. I was hoping to feel a lot better than this.
My Endo consultant says that even though my questionaire was showing no improvement I have to stay on GH due to the fact that I'm producing none on my own.
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Re: Starting on growth hormone

Postby Mgh » Mon Mar 26, 2012 5:31 pm

Bill, sorry to hear GH is not making any difference. I am panhypopit and have been on GH for six weeks now and very quickly noticed both positive and negative changes which I suppose are related to the GH. I was surprised by how quickly these changes happened.

I am definitely stronger. For example, I can carry the wet washing to the line and I can walk much further without feeling pain and exhaustion. However, I still need nine to ten hours sleep at night. I also noticed the return of symptoms that had been alleviated once I started on levothyroxine. I posted previously on this forum asking if anyone else had noticed this type of side effect. I understand from the prof. that my symptoms could be a direct effect of the GH or could be as a result of a change in T4 / T3 levels. I am waiting for the results of a blood test to see if my levothyroxine needs to be upped.

The way I view the medication is that it is a cocktail and all the ingredients need to be properly balanced to get the optimum effect.......easier said than done. A great deal of patience, goodwill and expertise all help! It is all to easy to lose heart and become overwhelmed.....we can only do our best to help one another to remain hopeful and determined.
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Re: Starting on growth hormone

Postby plum » Tue Mar 27, 2012 8:23 am

hi

i like your description of this as a cocktail. sounds nicer than the phrase i have been using. i say that i am like a vegetable soup. cocktail sounds more elegant somehow!

cheers

Plum
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Re: Starting on growth hormone

Postby member_37074 » Sat Apr 07, 2012 9:15 pm

I am still waiting for funding to be agreed for my growth hormone treatment, the first 3 months is secure but the consultant said last week there is no point starting if the PCT will not pay. he assured me that there are ways and means around this but it takes time.

he says that because i have such bad symptoms and blood results he hopes he will see a transformation in me within 3 months of starting. i do hope so as i have zero quality of life at tbe moment.

i have other conditons making things worse, i have fibromyalgia diagnosed as very severe on the scale, depression, hashimotos thyroiditis, and i have pituitary failure with no tumour, i think it has been caused by the trauma of living in an abusive relationship, now over 15 months ago and also the traumatic experience of suicide attempts and time on a volatile psychiatric ward.

I would like to hear from someone who is newly on growth hormone so we can compare notes and experiences. i still have no idea when it will start. i am nervous of giving myself the injections too

thank you poppy
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Re: Starting on growth hormone

Postby biscuits » Wed Apr 11, 2012 12:36 pm

Hi Poppy,
I also have some of the conditions that you have and started on growth hormone last September. Firstly, don't worry about the injections - as other people have said, the needle is so fine (and short) that it's really not painful. I've got a pen device and using it couldn't be easier - these days it takes less than 30 seconds for me to inject myself. I tend to inject my tummy as my legs are quite muscular and I get bruises whenever I inject into them.
I think that the GH has made a small difference, but it's not the miracle I'd hoped for, although other people seem to feel enourmous benefits from it. I'm being reviewed next month, so whether the consultant will advise me to carry on with it remains to be seen.
The only problem I've had is that growth hormone can lower thyroxine levels and about 4 months after I started, I began to feel worse than ever. My GP increased my thyroxine and that's made things a little better.
Anyway, I hope that your funding comes through and that you really benefit from the treatment - let me know how you get on.
Biscuits x
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