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Everything posted by diane177432

  1. I had stereotactic radiotherapy treatment and fortunately the hospital staff were extremely competent and I would not be where I am today healthwise had it not been for this treatment. I tumour has shrunk and continues to... This is obviously a sad and unfortunate story but we shouldn't tar everyone with the same brush.
  2. It's been a long time since I have posted here...nearly a year in fact. I have been absent from the site in an attempt to try and move on from Cushings and regain my life. I don't know if that will ever be possible although a year on I feel so much more better, more energy, and more like the old me again. The only trouble is my life is still ruled by my medication and just being a little late means I can feel just how reliant I am on them. I fine that sad. In the past year I have tried my hardest to lose weight however I have just managed to maintain the 3 stone loss. I am optimistic however t
  3. I started out last week with such optimism. Monday, I got up early and decided to make the walk to work, leave the car at home, be good, face the cold and feel refreshed. It is a 40 minute work to and from and so will be an hour and twenty minutes walk a day. It was a bit frosty and I had to watch where I walked but it was lovely to get out in the fresh air and it did feel refreshing as hoped. I was a bit shakey when I got to work and also in the last stretch walking home but it was good. Tuesday, I was able to walk again as the weather was still OK. However Wednesday to Friday the snow came b
  4. Thanks for your reply. I have now been in recovery for 3 years. I had pituitary surgery in 2004 and 2006 and radiotherapy at the end of 2006. I am sorry to hear that you have been unwell too. My blog wasn't so much as being hard on myself, I didn't intend it to come across that way - it was more about what a journey the past year has been for me personally. My life really has come full circle. All that I have lost has been regained except for full health of course. I am nearly back to my old self and when I say there isn;t a day that goes by that I am well, I mean the small things like an imba
  5. I didn't realise these blogs were still up and running...its been such a long time since I last posted something and so much has happened inbetween. 2009 has ben such a year of changes...it's been a big step for me personally and I seem to have come full circle in a lot of things in my life. Having Cushings has caused me so much loss and depression and anxiety of where life will take me me. Would I live to a ripe od age, would I see my son get married and have kids, would I ever get back to normal health again, would I regain a career I had loved and lost, would I ever be a resemblance of me a
  6. Hi Judy, The people I am seeing today are in the Genetics Endocrine Unit at Addenbrookes Hospital in Cambridge, UK. Their names are Dr Soo-Mi Park and Dr Helen Simpson. As I recently found out my step-brother was rushed to hospital with a tumour and has been diagnosed with cancer and also my Grandad adn Uncle on my Dad's side had brain tumours as well as my Nan on my side, we need to find out whether this will effect our son as well as my step-siblings off spring (half brother and sister on my fathers side). I cintacted my endocrine consultant Dr Mark Gurnell and he got me to contact my ne
  7. Who is the endo Judy? I am seeing a genetics endo team on Monday to discuss hereditiary brain tumours. Best of luck, Diane xx
  8. I had a clinic appointment yesterday and everything seems to be going OK so far. My Doctor is pleased with my progress. I have lost 4kgs since my last appointment in November which is encouraging, so to date I have lost 15lbs. Slowly getting there but at least every week the numbers on the scales are going down. I seem to feel more clear headed than past months. Perhaps its because Spring is nearly here andI can get out in the fresh air and do things. The change in weather has certainly lifted my spirits. I have had one re-occurring problem and that is this damn kidney ache. Its been goin
  9. I had my last clinic appointment a week ago on the 18th November. Since then there have been a couple of changes. I increased my thyroxine from 125mcg to 150mcg as my thyroid was showing to be on the low side. It has been consistently OK since starting thyroxine and this is the first time in a long while that it has lowered. I have now switched from dexamethasone to hydrocortisone taking 10mg in the morning and 5mg in the afternoon (with an option 5mg later in the day should I need it, but I haven't started taking that yet). The throbbing and burning sensation in my kidney area has not subside
  10. Thanks Robin. Sorry I missed your post to my blog. That's very kind of you. Needing a lot of virtual hugs right now - life is getting me down alot of late... Much love Diane xx
  11. I am feeling very much out of sorts today. It seemes that any activity that makes me exert myself lately results in my body temperature rising and then I get upset tummy. I have also had some sinus headaches this morning and a general feeling of internal shakes and feeling rough. I really don;t know what is going on right now. Earlier this morning I had headaches on the right side from my sinus across my head and my right eye started to feel strange. I started to think, oh no not again - is the pituitary appoplexy coming on again and is it affecting my right side, but fortunately it subsided.
  12. I have been feeling off sorts for a couple of weeks now. It was all going swimmingly for a while after starting the HRT. I had more energy and enthusiasm for life and then it all started to ebb off. I am having to take naps every day now. Granted I am up early in the morning but I am still getting very tired. I have lost all motivation and enthusiasm too. Maybe its the change of season, who knows? The HRT finally worked anyway and I had my first period in a very long time and am once again a woman...LOL!! Oh, joy! Need it like a hole in the head. The drawbacks are that I have had a very hormon
  13. I started HRT three weeks ago to replace oestrogeon and I have to say it is making me feel less exhausted than I was. I do still get tired and have to have the odd nap or two or three but now I am physically able to do more which is great! Life is settling down now and I am starting to decorate the house. It was a sense of getting into some sort of routine as it was so weird not working. I am trying to do some research into Nelsons as I am still seriously considering the BLA but want to cover all angles and know for sure what the pros and cons are. We are really settling into our new home
  14. Its been a very up and down month or so. I've moved house, resigned and left my job, Harry started a new school, we've just come back from a week in Spain and after having my most recent clinic appointment with my endo, I am not moving forward. Its incredibly disheartening and as I am a person who has to have some sort of focus I am finding it incredibly difficult coming to terms with the fact that I may never be cured. I am running out of options big time. The next step is for me to start HRT and I will hopefully begin oestrogeon replacements in the coming week or so. The next step arfter tha
  15. Today I had an appointment with my diabetic nurse. My cholestoral levels have risen from 5.8 in September to 7...I have to see the doctor tomorrow to discuss meds to reduce it and know I am bound to get a lecture on healthy eating. My blood sugars are still on the high side, morning one being 9.8-10.6 - I am still on te dex which is not helping. I have put on a stone in weight since September 2007 - again not good. My potassium is low at 3.1. BP is OK at 130/80, thyroid within range, LFT's OK and kidney function OK. I feel very rough though but it has been such a mad few weeks with the hou
  16. Its been a rough few weeks. Everything has gone out of whack and on a daily basis I am not sure what is going on - its very worrying. My diabetes is uncontrolled and my blood sugars are exceeding 10, not good for me. My weight just keeps going up - its so frustrating. The other day I put on half a stone over night!! My cheeks are still bright red and I just feel so tired all the time. Last week I had to take some time off of work because I felt like a truck had hit me and what caused me the most worry was that I had difficulty walking and it took me back to when I had aggressive Cushings and m
  17. Day Curve cortisol results: 9:00 322 11:00 321 13:00 327 15:00 284 17:00 261 Triglyceride 33 HDL Colesterol 1.3 LDL 380 Ratio 5 HbA 1C 8.3 Potassium 3.9 (range 3.4-5) Sodium 141 Urea 5.3 Calcium 2.32 TSH 1.2 (range 0.3-5.5) Free 14.1 (range 11.5-22.7) LH 2.7 (range 2.4-8.4) FSH 4.8 Oest 85 (range 21-140) Prolactin 484 IGF-1 25.7 ACTH 67 Glucose 10.2 The care plan as a result of my appointment with my endocrine consultant of 25th April 2008: 1) To take control of my Cushings by getting off the dexamethasone completely. If this is not a
  18. Thanks for posting this Mary. I did some reserach over a year ago when I started to experience various symptoms. The first diagnosis I was given was optical neuritis and possible MS. Not convinced I looked into it further and found articles on pituitary appoplexy that described exactly what had happened to me. I suggested it to my endo who was initially not convinced until he spoke to my neurosurgeoen and then an official diagnosis of pituitary appoplexy was confirmed. My inital symptoms were severe headache resulting in partial loss of sight in my left eye (about 90%) - fortunately my sight c
  19. There are some really informative articles here Melissa - one in particular has been useful to me as it talks about if all else fails i.e. multiple transphenoidal surgeries, radiotherapy and bridging the gap in prescribing Cushings management medication - as I am at that place right now it was interesting reading that article even though it was upsetting looking at the statistics. Thanks for sharing this link! Diane x
  20. Well, I was officially diagnosed with a 2nd reccurrance a week ago and on Monday 8th October 2007 I go into hospital for 5 days as an in-patient for 'investigations'...on my most recent MRI it looks as if the recent pituitary appoplexy episode has caused my residual tumour to collapse into itself and has shrunk. By all intents and purposes after 2 surgeries and radiotherapy I should be heading for a cure but I am not and they are all baffled by it hence the tests. It could still be a pituitary source but now they want to investigate other sources too. I am more scared this time round then I wa
  21. Thanks so much for this post Mary - your timing couldn;t be better as I start to research the adrenals and a BLA - something that may be on the cards for me soon. Love Diane xx
  22. I've been getting very tired alot lately - the weight is still creeping up and its quite worrying. I am past my maximum ever weight. I start a diet and exercise class tomorrow - bought myself some new trainers at the weekend in preparation. I desperately want the appointment on Thursday to be positive - no sign of a Cushings return, but I am not holding my breath as I do believe it is back. It makes me incredibly sad. I just so wat a normal life again - I had it for a brief time recently and it felt wonderful. I can't complain because at least I am up doing things, still active, working and ab
  23. Thanks for posting this Mary. Some of it is a bit over my head....but I am interested to read about Pituitary Apoplexy as I was diagnosed with it this year - I'll start looking up some of those long words to find out what they mean...LOL!! Diane x
  24. Thanks Mary - I found that a really interesting read. Diane x
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