New Member saying Hello

New Member saying Hello

Postby MikeDCross » Sat Oct 24, 2015 1:00 pm

Hello,

I have recently been diagnosed with a "shrunken pituitary gland" and "empty sella"; and I am very slowly starting to understand what this actually means; as the consultant tried hard to explain things but was incapable of speaking a sentence without 5 technical words I didn’t understand.

I have been put into Testosterone replacement, with my first injection next week…. I keep hearing that it could take a year until I start to feel better – is that normal?

I’m told I will be having 3 monthly blood tests to see how my hormone levels are fairing, and I can expect to have more replacement therapies as time goes on. Is this normal? Do the levels drop that quickly? Are there things I should look out for which shows that something has dropped below normal?

As you can tell I have lots of questions, so any advice is very welcome.

Thanks
MikeDCross
 
Posts: 137
Joined: Mon Sep 28, 2015 8:29 am

Re: New Member saying Hello

Postby plum » Sun Oct 25, 2015 8:43 pm

hi

hope that you find answers to your questions here, and in the various documents produced by the pituitary foundation. The language and concepts will eventually begin to make sense as you get used to them. i found that for the first few appointments it really helped to have someone else with me, who could take notes and remind me if there were any questions i had forgotten to ask. i remember on one occasion saying to my sister afterwards that i wished i had asked about something or other and she said that i had, and that the doctor had given an answer. i had completely forgotten just in the 15 minute walk to the coffee shop!

initially there will be lots of trips to the hospital for blood tests since they need to see what your levels are as treatment starts and to make sure that you are on the correct dose. once things have stabilised then they do become less frequent. i cannot say how long that will take since everyone is different. in my case i think it took about eighteen months to 2 years of fairly frequent blood tests and those all-day sessions where they test several times in a day. but now, 5 years later, i am tested 'only' twice a year.

is there a specialist endocrine nurse at the hospital where you are being treated? that person is likely to become a key person in your treatment, and will also be able to answer some of your questions.

best wishes

plum
plum
 
Posts: 322
Joined: Tue Nov 09, 2010 9:41 am

Re: New Member saying Hello

Postby Carl » Mon Oct 26, 2015 5:08 pm

Hello and welcome.

I can only echo what Plum has said. I had a pituitary tumour removed in 2013 and am also on Testosterone replacement (Nebido injection) as well as Hydrocortisone to replace Cortisol. It did take 6 months minimum for me to start feeling better and for me up to a year to get things at a stable level - but yes everyone is different.

I found the Endocrine nurse at my hospital very valuable and very grounded as she had seen it all before. My Endocrine consultant is also very good and very approachable, so I'm lucky in that regard. But healthy use of Dr. Google to find forums such as this, will help you to build up your knowledge of your condition. Also with the conditions listed in this forum, a certain amount of experimentation is necessary to get the drug replacements correct. With hormones that are normally produced naturally and 'on demand' in certain situations, it is very hard to mimic this with set tablet doses or injections. For instance my Testosterone injections were initially 12 weeks apart, but this has been reduced slightly to 10 weeks, but the good old blood tests will tell for sure whether this is working as well as how you actually feel. That latter part will be particularly important as a doctor can only tell so much from the technical data they have in front of them, whether you feel ok on the prescribed meds is the important part. Something to get used to.

Do let us know how you get on, I have a look on here most days.

Cheers, Carl
Carl
 
Posts: 207
Joined: Tue Oct 29, 2013 11:27 am
Location: Near Southampton, UK

Re: New Member saying Hello

Postby MikeDCross » Wed Oct 28, 2015 2:26 pm

Carl/Plum

Thank you very much for the info.

The hospital has transferred all care to my GP, who I think it learning as he goes (he qualified last year)..

Thanks
MikeDCross
 
Posts: 137
Joined: Mon Sep 28, 2015 8:29 am

Re: New Member saying Hello

Postby Mgh » Wed Oct 28, 2015 6:13 pm

In your first post you mentioned three monthly blood tests. Will your GP know which blood tests to do, how to read them and what action to take?
I wonder if how pituitary patients are dealt with differs greatly from one part of the country to another. How do you feel about your future care being with the GP? None of the GPs in my practice had pituitary experience but one of my nieces, luckily, had met it during her medical training and my cousin during her veterinary training so initially that is where I got my information before I discovered the wonderful Pituitary Foundation. However, when you are not feeling well it takes a great deal of effort to look for the information and to know what to do for the best.
My advice is to keep a diary of what is happening to you, any tests and results and write down your questions as they arise.
You can then use this to help remind you of what to say to the various medics and perhaps also discuss with Alison, the Pituitary Foundation nurse.
I hope this helps.
Mgh
 
Posts: 129
Joined: Mon Jun 27, 2011 12:25 pm

Re: New Member saying Hello

Postby MikeDCross » Thu Oct 29, 2015 3:47 pm

Hi,

I was allocated to a just qualified GP, and he was useless. I got transferred to the Senior Partner who was much better, and he will put in the hours to do it properly.

The consultant sent them a list of blood tests, she wants to see, and I assume that as long as the values are in the acceptable range they will be happy; equally I assume that if they are out of range they will have pre-defined solutions for fixing it -- but this is all new, so time will tell.

No one mentioned the idea of keeping a journal of health / feeling, I will start today.

Thank you.
MikeDCross
 
Posts: 137
Joined: Mon Sep 28, 2015 8:29 am

Re: New Member saying Hello

Postby plum » Sun Nov 01, 2015 9:58 pm

do keep track of all your blood values and as you get a few readings for each of the 'main' ones - the GP will advise you - then look for trends ie are the values going up or down. the doctors are usually mainly interested in whether or not things are in the normal range but i have found that looking at the trend can be very useful as well.

among the documentation available on this website there is a booklet aimed at GPs. my GP was quite pleased to get this when I passed it on to him.
you may be a rare case in the GP practice so they will be learning along side you.

good luck

plum
plum
 
Posts: 322
Joined: Tue Nov 09, 2010 9:41 am

Re: New Member saying Hello

Postby MikeDCross » Sat Nov 07, 2015 4:13 pm

Thank you for the suggestion of the document for the GP, I will give it to him in 5 weeks when I see have my next injection.....

With my first injection, the nurse said that it would hurt for 4 days, I would have said dull ache rather than hurt - is that normal?

I have to say that I don't understand how the injection is supposed to work, every other injection I've had does its job in minutes / days and is gone, however this one somehow manages to work for 6 or 12 weeks-- I do not understand how that can happen. I had no idea what would happen after the injection, but other than an ache in my muscle, nothing appears to have changed. From the comments in this discussion (thank you for your support) this seems to be normal - can some one explain how it works?

While having my injection, the nurse gave my new instructions from the GP, I get to take 800u of Vit D3 / daily, 2000u of Omega 3 / daily, a A-Z multi-vitamin / day and I have to STOP eating all Wheat.. Taking a few pills is not great problem, but No Wheat is horrid -- I never realised how much wheat I ate... Is is common to be told to stop eating Wheat?

I have been keeping a diary of how I feel, and the top 3 are:
- some days, I just feel hungry, even after eating a meal
- some days, I just don't feel hungry.
- I fall asleep so fast that I dont know I'm feeling tired, I can be reading book one second and asleep the next

Again are these common?
MikeDCross
 
Posts: 137
Joined: Mon Sep 28, 2015 8:29 am

Re: New Member saying Hello

Postby Carl » Sat Nov 07, 2015 10:29 pm

I have a Testo injection every 10 weeks. I find I have the dull ache for a couple of days, but it isn't anything too bad. The stuff that is injected is held in an oily substance that takes the body a while to absorb, that is why it lasts for so long. Of you were injected with 'neat' Testosterone the body would just absorb it too quickly. I used to use Testo gel which I rubbed into my shoulder every day, it probably gave a more even dose, but it irritated my skin as it is alcohol based so I moved to injection. It works for me although you do inevitably get more Testo in your bloodstream to begin with gradually tailing off.

For me I make zero Testo of my own, so I lost most body hair, became very nervy and very thin. I have regained a lot of muscle mass, the body hair and feel a lot more positive about life and more assertive, the Testo is supposed to strengthen your bones to, a bit like male HRT.

I'm not on a special diet, and eat wheat (well anything really!)
Carl
 
Posts: 207
Joined: Tue Oct 29, 2013 11:27 am
Location: Near Southampton, UK

Re: New Member saying Hello

Postby MikeDCross » Mon Nov 09, 2015 5:00 pm

Hi Carl,

thank you for the info, knowing what to expect is really useful.

My 3 blood tests, were carried out by 3 different labs, each with its own "normal" range; but consistently I was about 30% below the normal range, apparently when I've had my 3rd injections which is months away, they are hoping that I will be in the bottom quarter of normal.. to me middle or higher sounds better -- I will have to talk to the doctor when I get the results.

Thinking about now, I should have mentioned that I have EDS (type 3), so I'm hyper mobile, and this can cause all sorts of interesting challenged with injections -- my dentist has had to get used to doing filling and extractions without anaesthetic, as it does not matter how many injections they give, it dissipates so quickly it has no effect. Every operation is a GA, as locals have no effect... I asked my rheumatologist and endro consultants if this would be a problem with the T injections, they came back with insufficient research to know -- we will find out by trail and error.

I will wait for the next injection and see what happens... hopefully more than the last one... if not, I may ask to try the gels... and see if they work better for me...

Thanks
MikeDCross
 
Posts: 137
Joined: Mon Sep 28, 2015 8:29 am

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