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EndocrineWeb Community Advice

Complex Pituitary problems!!

From: LiverpoolLass21 - 7 years 3 weeks ago

Having undergone two Transphynoidal brain operations in Nov 1985 for a Prolactinoma and again in Jan 1986, when an abscess was found on the Pituitary cavity (never seen before!), I have suffered from many problems. The main ones have been since a car crash 18 years ago, when I suffered head trauma and just over 4 years ago, when I was knocked unconscious twice in 4 weeks, hitting the front of my head. I don't think I can go into all the details, because I would bore you, or not have enough space to write it all. Suffice to say I now suffer from Hypopiturism, Failing Adrenal Glands, Diabetes Inspididus (started a mild version after head trauma's of 4 years ag), but most unusually, WITHOUT a thirst. This is a terrible problem when I have erratic DI symptoms and I am peeing out so much, I still don't want to drink. So end up with Dehydration, cramps etc. Having had the 'proper' DI for 6 months after my brain ops, when I had a thirst to die for, I know what I should feel, but I don't. The head trauma's I am told, has damaged my Hypothalamus and thirst mechanism. I also suffer from chroic fatigue, from when I first wake so tired, to sleeping during the day (not all due to Sleep Apnoea as tests show a great improvement and I was never this tired when I was first diagnosed about 15 years ago). I suffer from Chronic obestity. I went into hospital a size 12/14 and came out 10 weeks later nearly 6 stone heavier; having had intravenous Prednisalone steroid for a total of 5 weeks and then 6 months of oral Prednisalone for the abscess near my brain, which caused other abscesses on my body and the loss of many teeth. Since the head trauma's of 4 years ago my weight has gone up further, despite eating a very healthy diet. I have been hospitalised 6 times in past 2 years in crisis's for low sodium levels. Lowest level 115, to 120. I was told it is my own fault for taking too much Desmopressin, when infected. Baring in mind they started over 2 years after I was diagnosed with DI and taking Desmo medication. I've had persistant UTI's for nerly 4 years; they started 5 months after the DI symptoms began. I had never suffered from UTI's in my life before. My Desmo spray doesn't always work when the UTI symptoms are bad. I've undergone two Cystoscopies in past 5 months and undergo a Urodynamic test soon to see if that will help. I've had two Urodynamic tests in the past two years and they were absolutely fine. Is it coinsidental the UTI's began after the DI symptoms started? This started me with terrible constipated, something I've never suffered from before. In fact I used to have diahorrhea up to 6-8 times a day before the DI started. Along with Esophigitis, Sleep Apnoea, Oesteporosis, Arthritis, Scoliosis and other problems, hospital doctors have told me they can't help me any more, apart to treat me as and when I become ill. But in the past 4 years they've never instigated any tests themselves, they never say "We will try and find an answer". In fact I instigated the 5% Salt solution test with an Endo consultant I'd met some years before. It's always "I can't help you". I can't take nearly all oral antibiotics because they don't work. I've suffered heart failure three times, during or after surgery, along with chronic infections (multi absccesses all over my body, Septiscemia and double pnuemonia), low immune system. I keep searching for an Endocrinine doctor who will take me on board and not just say, "I don't think there's anything more I can do for this patient". Trouble is, no one tries. Or perhaps I will have to accept there just isn't anything, anyone can do for me now. But despite it all, I have a brilliant sense of humour and I like nothing more than to laugh. It's what keeps me going. Anyone out there who has anything like my mixture of problems, or can help with any particular Endocrinine problem, please let me know. All of my other problems started until after I had the brain ops all those years ago. Prior to that, I was slim, fit (played squash and swam every week). I've seen so many different Endo consultants over the years, I feel I have'nt anywhere else to go. All of them say I'm complex, complicated, one even said 'weird', why isn't there someone, somewhere who could help me? Or am I asking too much off doctors. Luckily I have the most brilliant and supporting GP's, two of them.

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