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Just a quick post for support for any newley diagnosed pituitary tumour patients.
Times may be tough, but be strong and be positive! Im 33 and had a prolactinoma when I was 18, it came back when I was 24 and I then had radiotherapy. My tumour has gone I have no pituitary gland and I take hormone replacements.
Questions I had when I was first diagnosed..
Can I drink alcohol while taking my medication hydrocortisone thyroxine HRT. Yes in moderation! if you drink so much that you are sick, you may need a steriod jab so best not go over board. I dont drink spirits just a couple of glasses of wine now and then.
When do I take extra steriods, I take extra when I have a really stressful or busy day. I take around 20 mg per day and space my dose out through out the day, depending on what Im doing. If Im having a lye in and lazy day I take 15mg, If Im going to the gym I take 2.5mg 15 mins before I go. If Im not due a tablet then I take it as an addition but if my dose is due then I dont take it as an extra.
Can you live a normal life with panhypopituitarism ? Absolutley ! I would 40 hours a week, I exercise, I have a drink now and then, I feel well on a daily basis.
Can I exercise? Yes, take it easy and if you feel light headed dont be afraid to take 2.5mg a (little extra should help.)
Can I have children ? Yes although I personally have weight to loose before I qualify for assisted conception ....Im working on this at the moment doing the 5:2 diet lost 11 lbs but Ive 6 stone to go I will get do it!!!
What is radiotherapy like? Its a bit stressful as you'll need to get a plastic mask moulded for your face and you have to wear it during treatment. I had to go for treatment every day for six weeks. During the treatment I was anxious and worried but I didnt feel anything at all when I was having it done. I lost a tiny amount of hair above my ears which soon grew back.
Will I have regular MRI scans? Yes sure they will monitor you closely to make sure everything is okay after the radiotherapy.
What support might I need? Family and friends can be a great support if you struggle with worry I would recommend seeing a cognetive therapist this really helped me.
Will I have to inject myself with steriods? Ive had this condition for 15 years and Ive never injected myself. My husband and my mam have given me a shot when I was suffering from sickness and diarrhea.
My advice to anyone with a pituitary condition is ...... take one day at a time, be optimistic, let your specialist know if you feel unwell it could be something to do with your medication, be strong! if you struggle with weight issues as I do, remember that you are battling against the odds you can and will loose weight if you try hard enough, if you have to have surgery /radiotherapy ...trust your drs they are amazing at what they do !
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