Brain/Pituitary Tumors Community
Feel so awful
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

Feel so awful

Transphenoidal op to remove 3cm pit tumour 3 weeks ago. I feel so awful. I have ME/CFS and stress exacerbates my condition. Did fine whilst in hospital and first few days at home, now I feel like death. Apparently, my tumour has been described as subclinical Cushings - I have skinny legs, big tummy, round face. Drs say I was producing too much cortisol, now I'm producing none and am on hydrocortisone tablets. Boy, they make me feel sick, so have cyclizine tabs to help. I'm currently on 20mg HC am and 10 mg pm. I feel soooooooo rough. I'm bed bound, no energy, light headed, dizzy, nauseous, eating little - needing to poo after anything I eat - feel very alone and if my life will never recover. Please someone, tell me it gets better. I'm 48 so nearing menopause, no doubt my hormones are all over the place. I'm scared about having to take hydrocortisone for life - I just feel so isolated and yuck. Anyone been through this? Xx
14 Comments Post a Comment
Blank
Avatar_m_tn
OMG, you sound terrible... I'm sorry to hear that.
I saw the ophthalmologist last Monday and the surgeon on Thursday...Was told that surgery is required and would probably be in April due to the surgeons workload.....gutted at having to wait so long.....
Took a phone call from the surgeons secretary at lunchtime on Friday, the day after seeing the surgeon to be told that I'm going in on Thursday and surgery will be Friday.

I truly hope you feel better soon....I'm sorry I missed your post earlier.
Blank
Avatar_f_tn
That's good news though. Get it over and done with. Any questions I can answer, please ask away. I had a better day yesterday, managed to get dressed lol!  Obviously overdid it as I'm still in bed at the moment watching tv. Don't be worried about my lack of energy, I have ME/CFS which is all about no energy.  Absolutely no headaches, sight vastly improved, taste and smell starting to return and I can breathe through my nose - yay. Good luck for Friday and do let me know how you get on.  Hugs xx
Blank
657231_tn?1390151580
I am so sorry you feel bad.

You have probably been sick a while and it takes a while for the cortisol to get out of your body.

There is surgical recovery that takes only a few weeks and the hormonal recovery that takes much much longer. And yes, your hormones are all over. Be nice to yourself. Your feelings are quite normal. Your body is going through a lot of changes right now!!!
Blank
596605_tn?1369950227
How are you feeling now? I just reread your posts and noticed that you are taking 10 mg of hydrocortisone at night. Are you able to sleep on that? As you heal you should hopefully be able to take less HC? ~20mg a day as long as it is not being used for other conditions like asthma or autoimmune type stuff. Also Make sure that they do a stimulation test for growth hormone. It is connected to your sense of well-being and even fat distribution in the belly.
Horselip
Blank
Avatar_f_tn
Thank you. My dosing is 20 mg at 8 am and 10 mg at 2 pm.  I'm finding I'm not sleeping until after midnight. I have my insulin stress test Monday week and dexamethasone. I think one of these might test GH. Xx
Blank
657231_tn?1390151580
Usually 2pm is a good time for a second dose.

The insulin stress may be GH. The dex test is cortisol.
Blank
Avatar_m_tn
I had this surgery in 1984 Cushing's Disease, elevated cortisol . Post op I had low energy for about 4 months.I had big plans to use post op time to organize do  a few projects.  I can remember not being able to get out of my bed or off my sofa...my immune system had to regroup after the surgery also..I went through a period of about one month where every joint in my body hurt.  All these things passed in time and I regained my energy, my pituitary started making ACTH that produced normal cortisol levels again and my physician discontinued my hc med gradually.  My advice is stay in close contact with your endocrinologist to monitor all your pituitary hormone levels. Remember, every person is unique in their post op recovery.  Your endocrinologist will know if you are on the right track for your situation.  
Blank
Avatar_f_tn
Thank you granny, 6 weeks on and still pathetic and weak, living in bed practically 24/7 xx
Blank
657231_tn?1390151580
After my adrenals were removed, it took a LOT to get my body back in any sort of condition and I still lack any long term stamina. I had both shoulder freeze up (it took years to unlock them!) and had to keep a bucket in every room.

I did some physical therapy but depending on the therapist, some actually made me worse as they just had no idea what I was going through...  I do try to make a point to get up and do something every day - but if I exceed my body's preset *hidden* limit - I pay (and sometimes I PAY) the next day...

So you have to work gradually up to more activity - but it does make it really really hard to plan when your body does not cooperate for daily things. So be flexible and kind. I lost pretty much all my friends for this as most don't understand and think I am now unreliable when before I was not, and family only see that I lost some weight, so they think everything is completely fine.

It is learning a new body.
Blank
Avatar_f_tn
Thanks Rumpled.  You don't realise what that tiny gland does for your body!  I'm still low and rough.  Have got insulin stress test tomorrow so the journey to hospital will be enough of a chore, let alone suffering the test itself.  Feeling really sorry for myself at the mo, but I'm trying to perk up.  I've cried a river this past week. Hugs xx
Blank
657231_tn?1390151580
It does a LOT so your suffering is real.

Try to eat well, and try to at least stretch in bed and get up and walk a bit. The hormonal changes do cause a lot of emotional and body changes. It is also hard for family to understand - they think you had the surgery and you should be better ASAP!
Blank
Avatar_f_tn
Thank you, I do feel a burden. Stress test cancelled yesterday as they forgot to tell me to stop taking the contraceptive pill!  A wasted journey but booked to try again in 6 weeks time xx
Blank
657231_tn?1390151580
Oh wow...

I hope in the mean time that you start to feel better.
Blank
Avatar_f_tn
Thanks mate xx
Blank
Post a Comment
To
MedHelp Health Answers
Blank
Pain Tracker
Pain
Start Tracking Now
Recent Activity
296076_tn?1371338074
Blank
melimeli commented on Moma_Cher's status
2 hrs ago
296076_tn?1371338074
Blank
melimeli Back from ecuador! link to... Comment
11 hrs ago
7734321_tn?1393763564
Blank
LucyEvony commented on rumpled's status
Jul 16
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