Newbie

Newbie

Postby Roo69 » Thu Jun 14, 2012 4:35 pm

Hi, I have just joined the forum having had a TSH/GH producing macro adenoma removed by transphennoidal approach in January this year. A bit of a traumatic time, a 5 day stay in hospital turned into 3 weeks and a trip to ICU! Since discharge things have gone extremely well apart from 4 sinus infections. However, my biggest issue is my weight....I have gained over a stone since then and as I have seen on other posts, this really doesn't help for a positive body image! I have spent the last four weeks dieting and have just upped my exercise to swimming a mile at least twice a week. I haven't lost an ounce! I have to see my endo at the end of June and have GH tests but any encouragement or support from you guys would be welcome. Bex :)
Roo69
 
Posts: 3
Joined: Wed Jun 13, 2012 1:28 pm
Location: Worcestershire

Re: Newbie

Postby andypandy » Fri Jun 15, 2012 12:15 pm

Hi Bex. like you I am new quite new to pituitary problems. I had a brain cyst removed last year and they 'knocked' my pituitary stalk. This has left me with hypopituitarism. I didn't have the same post op problems as mine was removed through the top of my head....has left me with an interesting hair style though! Since then I too have battled with my weight and body image. The endo Drs just say once all i adjust to all the different hormone tablets currently climagest and desmotab then it will help with the weight. I dont believe them to be honest. My gp is helping me and we are having GH tested but I have joined slimming world. This is more for me so I can hand on heart say to the Drs I am eating healthy. I have also made a big effort with the exercise but its very difficult when all you want to do is sleep!!! I have been going to slimming world for 8 weeks now and have lost 7lb....not earth shattering but it has given me a bit of hope. perhaps with some good drugs and good diet I will get back in my size 10! good luck I know how frustrating it is but I think about how worse it could be!!
Andypandy
andypandy
 
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Re: Newbie

Postby Roo69 » Mon Jun 18, 2012 2:18 pm

Dear Andypandy, you are right, it could be much worse! I'm very grateful that the tumour has gone, it's just really strange trying to get used to a new body after 43 years! Bex
Roo69
 
Posts: 3
Joined: Wed Jun 13, 2012 1:28 pm
Location: Worcestershire

Re: Newbie

Postby emer » Mon Jun 18, 2012 3:24 pm

Oh my goodness! Someone else with a TSH producing adenoma! Haha, you're the first other person I have found with this condition since I was diagnosed a year and a half ago - although mine just produces TSH, not GH. I've also had trouble with sinus infections since surgery so I feel your pain!

With regard to the weight gain, it's probably down to your TSH and consequently thyroid hormone levels dropping post surgery. Have you had your thyroid hormone levels monitored since the surgery? Because high TSH leads to a high metabolism, it's probable that this was keeping your weight low before surgery, so if you've had a drop in TSH (which obviously would be a good thing!) then your metabolism will have slowed down and consequently if you're eating the same amount as you were before the surgery then you are likely to gain weight.

However, from what you've said it also looks like it's possible that the surgery might have left you hypothyroid i.e. with too little TSH instead of too much - if you're feeling very fatigued and you're not noticing a drop in weight despite exercising and eating well then hypothyroidism is probably quite likely. Unfortunately it isn't unusual after pituitary surgery to find that the surgeon has maybe taken out some of the healthy pituitary tissue and so you're now producing too little TSH. Make sure you get this tested asap - if you are indeed hypothyroid then you will probably need to start taking thyroxine, which should help with the wight.

If you're interested in chatting more, I have a blog www.pituitaryademoaner.blogspot.com where you could contact me if you fancy exchanging symptoms etc! I write quite a bit about my experience of a TSH producing adenoma but it would be really interesting to have someone to compare my experiences with :)

Keep us updated! x
emer
 
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Joined: Fri Sep 16, 2011 2:00 pm

Re: Newbie

Postby Roo69 » Fri Jun 29, 2012 9:46 am

Thanks for that Emer, already on Thyroxine! Went to see endo yesterday who really wasn't interested in my weight gain but has reduced the steroids. Just had a look at your blod...very funny, will look a bit more when not at work (and supposed to be actually doing some work!) x
Roo69
 
Posts: 3
Joined: Wed Jun 13, 2012 1:28 pm
Location: Worcestershire

Re: Newbie

Postby member_39544 » Wed Nov 14, 2012 1:08 pm

Hello, I am new to this and am finding my way round still. I have recently been diagnosed with a large tumor which is too big to remove. I hadn't felt 'right' for sometime but shrugged it off as 'the change', hot flushes and mood swings ect. Now I feel as though I am on a boat at sea, the sensation of slight unsteadiness. My concentration has got worse also. i daresay this may be the same for others ? Perhaps someone could enlighten me as to weird
symptoms. I have felt a bit scared and alone with this so it is good to be part of a group in a similar boat to me. I am feeling bewildered, although I don't wont to write too much as I am sure others have felt similar.
All the best, Christine :roll:
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Re: Newbie

Postby andypandy » Wed Nov 14, 2012 3:58 pm

Hi Christine. I felt the same as you...its not like having a broken leg that everyone can see this sort of illness is hidden, in my case I sometimes feel like I'm going a bit nutty. I too get the unsteadiness and get really annoyed with myself for 'wobbling' and if I'm tired I also drop everything. I find this forum useful as a reassurance that I am normal. I have my 'lump' removed last year via a burr hole, apart from a new hairstyle I am now left with memory and number issues...not funny when you can't remember you friends names.
andypandy
 
Posts: 15
Joined: Wed Jun 06, 2012 3:10 pm

Re: Newbie

Postby member_39544 » Thu Nov 15, 2012 8:45 am

Hi andypandy, thank you for being my first reply. Good to hear someone else has similar sensations. ( although I am sorry to hear that, have I made a blunder?!) I'm getting used to it now and learning to take time out when it all gets too much. The good thing is i can still ride my bike which must be to do with another part of brain, road sense for ex, wouldn't like to drive though, I would be like a rabbit in headlights! :o
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