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Diyanne · F
Ive no appetite since one week ago. I only take cereal. Im very tired
2legs · 46-50, T
@Diyanne Hi, Diyanne
, I too have panhypopit; I got diagnosed out of the blue, a couple of years back, just as I began treatment for an unrelated cancer. - Turned out the cancer was easy by comparason to the hormone mayhem caused by the panhypopituitarism, which the Drs think I'd had for years before from a road traffic accident, but just hadn't got bad, until randomly at the same time I had the cancer. - I'm male and so replace testosterone, cortisol (I take prednisolone as I didn't get on with hydrocortisone), I'm on growth hormone replacement too, but the Drs can't figure out my thyroid meds, as the levothyroxin makes me so ill. Since diagnosis, they've now randomly diagnosed I've an anneurysm in my aorta, two fractured spine vertibray and ostioporosis, all seemingly as side effects of medication or of the panhypopituitarism. My life just isn't what it was, I feel so 'not me', in pretty much every way. Oh; and I've also been blind since I was 17 (from the road traffic accident). guess I feel pretty screwed up; but the past few months I've really pushed, and taken control, and got heavily into exercise, which has improved me no end; my fatigue is vertually vanished, and to most extents I can at least live a relatively normal life again; even if the world around me, just doesn't seem real or tangible most of the time, and my emotions are so haywire from the hormones too. I got very suicidal a while back, but luckily went the 'other way'; hence got into the gym, and suddenly through getting fit, found a bit of my old self back (losing 40 Lb certainly helped from the exercise and dieting too). but. yeh, as odd as it sounds, the panhypopituitarism is so much worse than the cancer I had, -a t worse the cancer might have killed me, at best I survived; I survived; with the hormone stuff, its like you've survived, only to become some strange version of person once we were, and there is no help from teh Drs; they seem to think 'here tkae the medications, your fine' and there is no help beyond that, and nothing is further from the truth, as goes the 'your fine' bit. I get very upset, thinking how little real life I now have, each day, how everything has changed, and although I've done what I can to bring back some health and normality, I morn for the normal life lost, my old life...
, I too have panhypopit; I got diagnosed out of the blue, a couple of years back, just as I began treatment for an unrelated cancer. - Turned out the cancer was easy by comparason to the hormone mayhem caused by the panhypopituitarism, which the Drs think I'd had for years before from a road traffic accident, but just hadn't got bad, until randomly at the same time I had the cancer. - I'm male and so replace testosterone, cortisol (I take prednisolone as I didn't get on with hydrocortisone), I'm on growth hormone replacement too, but the Drs can't figure out my thyroid meds, as the levothyroxin makes me so ill. Since diagnosis, they've now randomly diagnosed I've an anneurysm in my aorta, two fractured spine vertibray and ostioporosis, all seemingly as side effects of medication or of the panhypopituitarism. My life just isn't what it was, I feel so 'not me', in pretty much every way. Oh; and I've also been blind since I was 17 (from the road traffic accident). guess I feel pretty screwed up; but the past few months I've really pushed, and taken control, and got heavily into exercise, which has improved me no end; my fatigue is vertually vanished, and to most extents I can at least live a relatively normal life again; even if the world around me, just doesn't seem real or tangible most of the time, and my emotions are so haywire from the hormones too. I got very suicidal a while back, but luckily went the 'other way'; hence got into the gym, and suddenly through getting fit, found a bit of my old self back (losing 40 Lb certainly helped from the exercise and dieting too). but. yeh, as odd as it sounds, the panhypopituitarism is so much worse than the cancer I had, -a t worse the cancer might have killed me, at best I survived; I survived; with the hormone stuff, its like you've survived, only to become some strange version of person once we were, and there is no help from teh Drs; they seem to think 'here tkae the medications, your fine' and there is no help beyond that, and nothing is further from the truth, as goes the 'your fine' bit. I get very upset, thinking how little real life I now have, each day, how everything has changed, and although I've done what I can to bring back some health and normality, I morn for the normal life lost, my old life...
Diyanne · F
@2legs : [c=#003BB2]Thank you so much for sharing your story. As if you are posting it on my behalf. Everything youve said is the same for me, except I dont have cancer, eostoporosis, fractured spine. Thank you again, so very much.
You have gone through a lot due to panhypopit. I dunno if I can go through that like what you've gone through. And you were blind due to the accident [b]*hugs u*[/b]
When you mentioned about going to gym, fatigue vanished, it gives me strength, encouragement. I need that support.
Youve experienced cancer and panhypopit. I dont have cancer, but I always have that in mind like what youve said, it can be easier if it is cancer, I can just quickly die. But panhypopit is life long. Now I know Im not alone thinking it this way.
Thank you again for supporting me by sharing your story. I feel less alone after hearing it from you. You dunno how much it means to me. You give me strength. [b]*hugs u*[/b]
[/c].
You have gone through a lot due to panhypopit. I dunno if I can go through that like what you've gone through. And you were blind due to the accident [b]*hugs u*[/b]
When you mentioned about going to gym, fatigue vanished, it gives me strength, encouragement. I need that support.
Youve experienced cancer and panhypopit. I dont have cancer, but I always have that in mind like what youve said, it can be easier if it is cancer, I can just quickly die. But panhypopit is life long. Now I know Im not alone thinking it this way.
Thank you again for supporting me by sharing your story. I feel less alone after hearing it from you. You dunno how much it means to me. You give me strength. [b]*hugs u*[/b]
[/c].
2legs · 46-50, T
@Diyanne Thankyou ever so much for your reply too!- this truely is such a lonley disease; My Husband I think partialy understands what its like for me; the sudden dip in energy, and then the next day being almost like my old self, only to pretty-much collapse from fatigue mid-afternoon, or suddenly just not understand at all what he says; I often find I miss the 'meaning' of what peple say; especially when its a joke, or something 'light hearted'- like I only ever understand serious things, and if something is on the joking side, I over-examine it, and try to figure it out, and when I can't, I'm confused!; which must sound so stupid to a person without panhypopit; heck!; it sounds stupid to me, as I can of course fully remember, just three years ago, what I was like, before this ddredful disease, and how light and light hearted and hapy I was all day every day; now there is always a looming dark cloud, even if now, thanks to the gym, getting fitter, losing weight etc, I'm starting to feel a little bit of my 'old normal ' returning, it can still often just vanish, and leave me back into the aweful emotional mess that this disease can create... - I did start very slowely with the exercise; walking at first, plus I joinmed yoga and pilatiz, (associated with a cancer support group), and after doing yoga, then the walking, eventually I got strong enough to do decent long walks, every day; suddenly I wans't tired, just walking to the shops, then, I got onto a health service 'nutrition and exercise' program; that increased the exercise a lot, and I started dieting, whilst doing some light cross training, and from that I joined the gym, but I did start very slow at the gym, such light weights, and only short periods on the exercise bike and ski machine etc; four months now at the gym, and my body has entirely changed shape, and my fitness levels and energy is so much higher. - I think being on growth hormone helps a lot, but I'm still not on thyroid meds, which I'm trying to get sorted, but getting the thyroid medication sorted is difficult, due to my heart problems now... - so many medications! - I've not been awake long; already today I've taken 3 1 MG prednisolone tablets, 1 B-complex and one B12 supplement, and soon I'll take my multivitamine and vitamine C tablets! - hoping I can get to the gym today too; which is something I never thought I'd be saying, even just a few months ago, its certainly been transformational for me, I do hope you can find some improvement, or, even etter, a lot of improvement, but I do think it always takes a long while, especially if its been some time getting gradually iller, and less fit (as happened to me, with both the cancer and panhypopit at the same time) keep sharing and best of luck! (trying to add you as a friend, but cna't find the button to do so at the moment...)
Diyanne · F
@2legs [c=#7700B2]Your welcome. Yes, I have never met any other panhypoit. Im very happy to meet you here.
the sudden dip in energy, and then the next day being almost like my old self, only to pretty-much collapse from fatigue mid-afternoon, or suddenly just not understand at all what he says; [b]I have the same problem. Its so true. I dunno how to handle this. [/b]
[b]I understand, I feel confused too sometimes, as if the brain cannot work. Sometimes I have blur vision, and have bad nausea.
[/b]
thanks to the gym, getting fitter, losing weight etc, I'm starting to feel a little bit of my 'old normal ' returning, it can still often just vanish, and leave me back into the aweful emotional mess that this disease can create
[b]Me too, I don’t go to gym but I walk around the apartment to get some exercise, my dad will make noise if I dont do it. I feel better after the walk, but then I will come back feeling very tired. Sometimes I fall to sleep right after the walk. I dunno how to handle this too.
[/b]
so many medications! - I've not been awake long; already today I've taken 3 1 MG prednisolone tablets, 1 B-complex and one B12 supplement, and soon I'll take my multivitamine and vitamine C tablets!
[b]Thank you for this advice. I will ask dad about these.
[/b]
Thank you for trying to add me as friend. I appreciate it so much. Ive already added you as my friend.
Thank you for sharing your story with me. This is a support for me. You support means strength for me. You dunno how much this means to me.
[b]*Hug u*[/b]
[/c]
the sudden dip in energy, and then the next day being almost like my old self, only to pretty-much collapse from fatigue mid-afternoon, or suddenly just not understand at all what he says; [b]I have the same problem. Its so true. I dunno how to handle this. [/b]
[b]I understand, I feel confused too sometimes, as if the brain cannot work. Sometimes I have blur vision, and have bad nausea.
[/b]
thanks to the gym, getting fitter, losing weight etc, I'm starting to feel a little bit of my 'old normal ' returning, it can still often just vanish, and leave me back into the aweful emotional mess that this disease can create
[b]Me too, I don’t go to gym but I walk around the apartment to get some exercise, my dad will make noise if I dont do it. I feel better after the walk, but then I will come back feeling very tired. Sometimes I fall to sleep right after the walk. I dunno how to handle this too.
[/b]
so many medications! - I've not been awake long; already today I've taken 3 1 MG prednisolone tablets, 1 B-complex and one B12 supplement, and soon I'll take my multivitamine and vitamine C tablets!
[b]Thank you for this advice. I will ask dad about these.
[/b]
Thank you for trying to add me as friend. I appreciate it so much. Ive already added you as my friend.
Thank you for sharing your story with me. This is a support for me. You support means strength for me. You dunno how much this means to me.
[b]*Hug u*[/b]
[/c]
2legs · 46-50, T
@Diyanne It means an aweful lot to me too!0- we can help support each other....
how long have you been diagnosed, and on medication? - I was a real mess at first, a couple years back, but dealing with the cancer at the same time too, and now, at last it feels like I'm a bit more organised with medication, and feeling a little better most of the time, and sometimes as I say, almost* feeling like myself again! - having said which, I really want to go to the gym today, but so far I've just not worked up the energy to do it, which I know is silly, as I always feel better once I've been, even if I only manage half an hour of weights (only?- I couldn't do even twenty minutes weights, a few weeks back!) - already I'm getting able to do more there, and suddenly I find bits of myself, my old self; wanting to push myself, lift more, or longer etc!- making me actually feela bit alive for once! Everyone, from what I've read, is so differnt with panhypopit; its difficult to get the medication balanced just right, for each person, and no two people seem to be the same, I'm not sure why that is, but, well, the bodies hormones are just so complicatd! But, please try not to be too hard on yourself, things iwll get better, its just such an annoyingly slow process.... Hugs back!
how long have you been diagnosed, and on medication? - I was a real mess at first, a couple years back, but dealing with the cancer at the same time too, and now, at last it feels like I'm a bit more organised with medication, and feeling a little better most of the time, and sometimes as I say, almost* feeling like myself again! - having said which, I really want to go to the gym today, but so far I've just not worked up the energy to do it, which I know is silly, as I always feel better once I've been, even if I only manage half an hour of weights (only?- I couldn't do even twenty minutes weights, a few weeks back!) - already I'm getting able to do more there, and suddenly I find bits of myself, my old self; wanting to push myself, lift more, or longer etc!- making me actually feela bit alive for once! Everyone, from what I've read, is so differnt with panhypopit; its difficult to get the medication balanced just right, for each person, and no two people seem to be the same, I'm not sure why that is, but, well, the bodies hormones are just so complicatd! But, please try not to be too hard on yourself, things iwll get better, its just such an annoyingly slow process.... Hugs back!
Diyanne · F
@2legs [c=#BF0000]I agree with you. So difficult to take enough medication especially cortisol. I have hypoglycemia too. I have no appetite for many days now. I feel drowsy and mausea. I force myself to eat. I dont want to get hypo. It make me shaking and sweating and my heart beat will run fast. Thank you. I will remember that. Thank you for your support. I need it. It means strength for me. [b]*Hugs u*[/b] [/c]
Diyanne · F
@2legs [c=#BF0080]Thank you so much.Im glad to hear that we can support each other. That means so much to me. Its been 7 years now Ive been diagnosed and on medication. Same here, It was very difficult at first. You are worse because you have cancer. I understand if you feel like not going to gym. I have that problem. I want to walk for exercise, I want to do many things but I feel so tired. Sometimes I cannot open my eyes. Thank you for your support, it means so much to me. You give me strength.
[b]*Hugs u*[/b][/c]
[b]*Hugs u*[/b][/c]
Diyanne · F
@2legs [c=#7700B2]Ty. I went to see doc two days ago. Doc said I have infections. I have stomach upset....it come and go.....it come for few seconds and then Im okay again. I go to the restroom like once or twice a day but the no.2 is so little . Doc gave me salt solution, antibiotic, stomach pain meds and asked me to stress dose for cortisol for 1 week. I will see him again next week. I feel better now. Ty for your support and your advice. It means a lot to me.[/c]
2legs · 46-50, T
@Diyanne Glad to hear the Dr sounds lik e they're trying to help; I think you oughta feel a lot better if they can get this infection cleared up; with being on steroids, its always bad for us when we get an infection, and of course, if it gets bad enough, and you vomit etc, you'l have to go to hospital for injections of the hydrocortisone, plus fluids etc, but, hopefully that won't happen too oftne; I've only had one Adrenal crisis so far, and that was really horrible, so I'm hoping I can avoid infections bad eough to cause that, if I can.... Here's hoping you improve some more soon, and can get some strength back... best of luck!
Diyanne · F
@2legs [c=#7700B2]Thank you 2legs. Im a lot better now. Im glad Im not vomiting this time. I was trying hard to overcome this. Yes, the doc was very helpful. Im sorry you also had adrenal crisis. I agree with you. It is horrible. Thank you so much for your support. Your support means strength for me. You really has helped me with this. Thank you again. [/c]
2legs · 46-50, T
@Diyanne so glad you sound like our getting on a bit bette rnow.... I understand truely what a struggle it is; I'm lucky I guessk, I've managed to get into exercise, and lose weight, and now I'm so much fitter and stronger, I can at least function fairly normaly most days, with perhaps just a little more fatigue than I would have had before panhypopituitarism, and I still struggle a bit with just my mind, thinking memory, that kind of thing, but even that is getting a little easier I think; I'm hoping to finally get some thyroid medication soon, and so hopefully I may improve more once I'm on that, and get th e 'numbers' on my bloods even closer to so-called 'normal'. I do hope you continue to improve, and get to enjoy life somewhat more than I gues you have been of late, whilst so ill... Hugs and cuddles, and best of luck.
Diyanne · F
@2legs [c=#BF0080]Thank you 2legs. That you understand. It really helps when we have someone that can understand and share the same struggle. Im glad to hear that you can do all that and feeling fairly normally most days. I understand, the fatigue is hard. I have that problem too. Im glad that your thinking is getting a little easier. Sometimes I forget the words that I want to say. After a while, I will remember again the words that I want to say. Doc said it is becoz of the panhypopit. Im glad that youll have your thyroid medication soon. Will you also be on calcium. My doc put me on calcium becoz he said I will have weak bone. My dentist said I have weak teeth. I have many problems with my teeth. He gave a letter to my endocrine doc about my teeth. Thank you so much. I feel better now. I can talk to people in here and laugh if they make jokes, Im enjoying my life now. Your support gives me strength. It means so much to me. Thank you for the hugs and cuddles. Your hugs and cuddles are also a strength for me. *Hugs and cuddles* back to you. Best of luck to you too. [/c]
2legs · 46-50, T
Hi! yes; I take calcium, vitamine D, vitamine K, and magnesium, for my bones; I already have ostioporosis, weakening of the bones, caused by the steroids, one of the worse side efects I think, very annoying as I was always so fit, and never had problems with my bones etc, until the medication....