Brain/Pituitary Tumors Community
Please advise
About This Community:

This patient support community is for discussions relating to Brain Tumors and Pituitary Tumors.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Please advise

Hi all,

Sorry if I’m posting this at the wrong place.  I can’t find hypopituitary. I guess this is the most relevant to my issue.  

I got hypopituitary due to head trauma after an accident about 10 yrs ago.  Pituitary had no longer functioning.  I’m hypothyroid, adrenal insufficiency, diabetes insipidus. I’m taking most medications taken by hypopit except GH.

I become very easily irritated lately (a month plus now).  The normal, day to day life is becoming irritating which was nothing matter to me before. It had affected my work in the office.

I don't know if it is something to do with me not taking the medications regularly except the desmopressin. I don’t take it regularly because I find it hard for me to balance out between hypo and hyper.  I become tired with it.  I always try to minimize stress as much as possible, laugh as much as possible, because I know stress make this disease worse and I’ve experienced it quite well if I got stressed out.

Is it right that hormone insufficiencies can only be noticeable or come into effect sometime later.  For desmopressin, I can see the effect almost instantly,  because the moment I stop taking, I’ll starts to urine and drinking excessively.  

Any advise is highly appreciated. tq

Related Discussions
11 Comments Post a Comment
Blank
657231_tn?1390151580
Hello! Behind the scenes I have been asking them to break out a pituitary section but in the meantime, here is just fine. I am also hypopit. I take everything but DDAVP.

Are you still being followed by a neuro-endo and have you been tested lately? Your hormones may have changed a bit and you may need an adjustment. You certainly do need to take your meds regularly (it is a hassle!) as the body can get really out of wack. AI can be fatal so you are really taking you life into your hands by not being good about that.

I set out all my meds in one of those 7 day a week, 4 time a day things (one of the ones where you can pop out a day and carry it with you) and I have quite a few so I can do many at one sitting and that way at night after I take the pills for the night and do my shot, I get the next day out and my morning pills are all set - it really helps compliance.

Life's stress is hard to manage and if you are uncontrolled AI - it is really hard. Are they replacing you with HC or another corticosteroid?
Blank
596605_tn?1369950227
Hi there-
I know how you feel, if that helps at all. I am also hypopit like you and I become easily irritated. Ever since I had to go onto the fake hormones it just never has been the same as it used to be for me. The one group of hormones that I am not taking are the sex hormones and I am thinking of asking to go back onto them as maybe this might help me.
Most of the other hormones take longer to act than the dessmo. T4 lasts for a week, I've heard.

The only thing I can think of is that you might talk to your neuroendo. They can retest your levels and maybe some of your hormones do need adjustment? It also might be that this is how it is now.to some degree.

Sending a hug
Horselip
Blank
1363339_tn?1338774653
Thanks Rumple, Horselip

Yes, I’m still under neuro-endo, seeing them every 10 months.  My last visit was last January.  They said my levels are okay except cholesterol (higher), they asked me to continue with the dosage. I need to wait until the next appointment to see them.   The GP can’t help me so much (sorry). I’ve tried twice on different occasions.  In fact he said, “It’s better for you to bla…bla...bla…, we’re not endo”.  I understand that.

I understand about the uncontrolled AI.  I’m still on HC.  

Thanks for sharing re the meds management. 

......Most of the other hormones take longer to act than the dessmo. T4 lasts for a week, I've heard
Thanks 

The sex hormone….apart from having back my monthly period, it helps me a lot with my mood.  I feel happy, I can smile to people…otherwise it’s like, as if I’m in depression…feeling down kind of thing.  I’ve experience it once when I intentionally stop taking it for a month.  I wanted to see whether I can get back my period without taking the sex hormone (I didn’t get the period).  

The adjustment......I'll see if I can push the appointment sooner.

To be able to share things with people who understands…really helps me to keep moving.

Thanks again
Hugs
Blank
596605_tn?1369950227
Thank you so much for your comments about the sex hormones helping your mood. I was on a cream for a few years and it did help. I am allergic to the adhesives in the patches and then the pills are not recommended if you are on GH. Because of my age and other things that are going on with me, I stopped the cream. I do not want a period either  I've had enough of those, thankfully :) But, like I said I am going to revisit the issue for other reasons.

I was wondering why you are not on GH? That does help my cholesterol oddly enough.

How is your DI? Mine is such a pain mostly because I don't medicate during the day because I tend to get over hydrated when I do. I think that it is the weirdest condition known to man :)
xx
Horsey
Blank
1363339_tn?1338774653
Hi Horselip

Sex hormone.  ……I do not want a period either I've had enough of those, thankfully :)
:) :) :) …. I understand.

Good to hear about revisit the issue :) .  Hopefully they can find some options suitable for you.
Medically, is it okay if you’re not having the period.  Endo said, I must have the period to avoid cancer risks

GH……That does help my cholesterol oddly enough.
That’s good, I’m happy for you :)

Yes, I heard a lot that GH is good for us.  The endo had several times asked me to take it…but I can’t afford it…not now.  

The DI.  Ever since my office moved much further away from home earlier this month, I noticed that my ddavp doses had gone up. A bottle last only for a week or less! 3 doses had gone up to 5 doses per day.  Traveling made me tired, it made me pee a lot and the thirst is &%#...  A dose lasts only for 4-5 hrs which normally it should be able to last until 8 hrs.  I got a job nearer but the pay is much lesser (it’s a small company)…can’t afford it…I have housing loan to pay.  

I understand about getting over hydrated.  Because of that I limit my water intake to 3-4 glasses a day, sometimes less! I came across a DI, she use very small glass to control the water intake. She was advised by her endo.  I can’t afford not taking ddavp.  I had couple of times tried not taking it because I want to less depend on it, but it made me worse.  I was so weak, the heart was beating so fast, peeing and drinking every 20 mins.  3 yrs ago I was admitted for uncontrolled DI. And for you not taking it during the day… I can’t imagine that.  DI is painful indeed.  

……I think that it is the weirdest condition known to man :)
Agree.

Hugs.
Blank
657231_tn?1390151580
Sometimes you can get a doctor that does studies for GH and you can get it for free or low cost. It is starting to get cheaper as more companies are making it but the newer ones all have to be kept in the fridge which is a PAIN to travel with (so I tell them they are idiots to formulate that way!!!).  Even though I only travel to a doctor...

I cured my period thing - got everything cut out. But I am still on those hormones.

Hearing you guys talk about DI make me dread it if I ever bite the bullet and radiate... they tell me it is temporary... *right*.
Blank
596605_tn?1369950227
I don't know if you live in the USA or not. If you do, there is an organization called the Chronic Disease fund. You can Google it. They paid all but $100 for my growth hormone, and then GH manufacturer paid the rest. If you meet their income requirements, they can really help. You see I had to stop working, and my hubby was a teacher at the time so we did not have much money. They helped me for a few years when i was first diagnosed as my hubby was able to improve his job and earnings and my Social Security was approved.
Blank
596605_tn?1369950227
They also help with DDAVP
Blank
1363339_tn?1338774653
Hi Rumpled, Horselip

Meds in the fridge?…I can relate that. At the earlier stage of my treatment, the ddavp that I was taking need to be kept in the fridge.  Yeah… it’s a hassle.  Fortunately, several years later, I got ddavp fridge-free, new formula maybe :) .  It’s a great relief indeed. Hopefully they can find better formula for GH too.    

…..I cured my period thing - got everything cut out. But I am still on those hormones.
So sorry to hear this Rumpled.  I wonder how it feels living w/o it.  

DI….they tell me it is temporary... *right*.
I’m not sure.  Horselip…any idea?

Horselip, sorry that you have to stop working….must be hard on you back then.  I'm glad to hear that you’ve got the Social Security approved.  

Tks re GH info on financial assistance.   I’m not in the USA.   I got my meds supply from the university hospital owned by the government.   I only need to paid $20 per month for all the meds, the rest is paid by the government.  I’m taking the meds supply monthly.  Unfortunately, they don’t cover GH.  

......They also help with DDAVP
Glad to hear you got the full support : ).   Initially, I have to pay for this.  It costs me $150 per bottle.  But after about 2 yrs, the hospital helped me with it…phewww !!




Blank
657231_tn?1390151580
I think we all have a lot in our fridge - at times it is meds, at other times, the lovely testing that we have to do... the orange jugs that make my hubby groan etc.

I am glad you get help with your meds - but surely there are GH programs in other countries? There can't be only a need here...

I am also on SSDI - it amazed me that hormones got to be so debilitating.
Blank
1363339_tn?1338774653
.......I am also on SSD
I'm glad to hear this :)  :)  :)

.......it amazed me that hormones got to be so debilitating.
Exactly.....and it's an invisible disease.


Blank
Post a Comment
To
MedHelp Health Answers
Blank
Pain Tracker
Pain
Start Tracking Now
Recent Activity
296076_tn?1371338074
Blank
Missing mom from Dundee Oregon
Jul 28 by melimeli
296076_tn?1371338074
Blank
melimeli it's hot today Comment
Jul 28
296076_tn?1371338074
Blank
melimeli commented on krichar's status
Jul 26
Top Cancer Answerers
657231_tn?1390151580
Blank
rumpled
Northern, NJ
Brain/Pituitary Tumors Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Cancer Answerers
657231_tn?1390151580
Blank
rumpled
Northern, NJ