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Everything posted by MelanieUK

  1. I've always split my doses into 3 - that's the advice given by endo's as standard over here in the UK. I always found it odd that in the US you usually take 2 doses a day, it worries me because I can't help thinking all of you that are on 2 doses must feel awful for a big chunk of the day! I take 10/2.5/2.5 at waking, then around 12 and last dose around 5pm and though the dose has altered several times I still stick to the same time scale.
  2. The fact that her cortisol "spontaneously dropped to 7.2 mcg prior to surgery" begs the question does/did she have aberrent receptors reacting to LH/HCG like I did? I bet they didn't even test the gland after surgery to see if was reacting to anything specific. The dose of 250mg of Metyrapone was probably too small to alter her cortisol levels anyway, that's only one pill a day! Good find though Mary.
  3. I know it's an emotive issue, but in any National health service there has to be limits. This lady has also previously had IVF treatment but the article didn't state whether that was NHS funded or if they paid privately for it - IMO services like IVF and a few others that I don't really want to get into an argument about should NOT be paid for by taxpayers but they are. The difference in this story is that it's an argument about a life extending drug NOT a life saving drug - plus the drug company hasn't applied for it to be used in the way this lady's consultant wants it to be used so they probably can't give approval for it. I know it's a very emotional story because she has young children but would you have a different attitude if it were a 90 year old wanting to extend their life for maybe just a few months? They're using the argument that she wants to see her children grow up, well we all do but sometimes that just isn't on the cards for us....the truth is that most of these types of drugs only offer a few months extension to life, she wouldn't get to see her boys grow up even if given the drug cost-free by the NHS. She is a brave lady and I DO actually hope she ends up getting the drug - there are many things they could cut in order to fund these drugs but lobbying groups would be up in arms about any kind of cuts to services so the status quo continues between NICE, NHS trusts and patients' needs.
  4. How exciting! Do try to find out where the blood will be getting sent. I find it ironic that your family's blood is getting sent here and bits of one of my dodgy adrenals are getting sent to the US - playing swaps lol! Here's hoping all this research will do some good in the future.
  5. I lost most of the belly fat (before I got preggers lol!) but stil have spare skin (copious amounts of it!) and a pocket of fat that I just know will not go away without surgery - the apron that hangs down with the spare skin is where that fat pocket is. I think that because of the way the fat is distributed with Cushings that it would be very difficult to get rid of it all - there's only so many stomach-crunches you can do in a day! So I suppose that I do agree with the article, unfortunately. I have no idea what those receptors are that were mentioned.
  6. I just listened to it - I now know why you all think he's great!
  7. It's the "OR" placed inbetween, like any of these tests are completely diagnostic 1st time around that's getting up my nose - he needs to keep up to date....bet he doesn't believe in Cyclic Cushings either!
  8. The health police are going to get you! They've been talking about limiting health care for smokers and overweight people here for a few years now - yet they increase funding to "help" drug addicts and alcoholics...because it's an illness ( it's not self-inflicted in any way of course!). Even though employers do not fund personal health care here a lot of them are also saying no to employees who smoke or are obviously overweight as they say it makes a big impact on the amount of absenteeism in the workforce. Personal choices are being eroded all the time sadly.
  9. Hiya there! I'm not too bad - just come out of a rough few days, but even those are better than when I had Cushings lol! Hope you are better too?! XXX

  10. Yay Cindy!!! Another "med-celeb" to add to the Cushy ranks lol!
  11. TY for asking hun - not too good right now, don't really want to post about it 'cos may need another surgery, will know by end of this week and post then. I hope you're keeping your chin up! *hug*

  12. That is a good article Robin, the difficulty over here is trying to find out WHERE the specialist centres are, though the Pituitary Foundation UK does inform patients of good centres if they give them a call. Then again, during another of my "Google" missions - I stumbled across a complete directory of every GP practice and hospital, along with EVERY Dr & surgeon in the country and what their particular speciality's are, where they are based and where their private practice is located. You have to pay a fee of ?2.99 to access ALL the information available, but I found it good to look through. I've had it for a couple of weeks but couldn't post it on the Dr's forum....so here it is. NHS Directory
  13. Good article Caroline! ...that is how I was diagnosed with PCOS - how wrong were they?!!!
  14. Wow Cathy - you turned up a gem of an article there yet again! You're definitely getting yourself armed for your next round with the Dr's! The part where it says it is VERY RARE for someone over 30 to develop PCOS is certainly going to help you out I think! Yay for you!
  15. That is a brilliant report Robin! Very up to date too - I think there's a few people who will find that useful info to take to thier Dr! DAVE!!! CATHY!!!....anyone else for that?!!!
  16. I have made a post in the Cyclical/Intermittent Cushings board but feel this will be of interest to all of you as this has A LOT of the same symptoms as Cushings and may be the answer for some, I hope it may be my answer, though it doesn't address ALL my issues, it's definitely worth looking at as a part of the jigsaw puzzle...I'm really excited about this! This is not your normal thyroid gland...you have 4 of these glands, about the size of a grain of rice! Parathyroid disease...symptoms....PLEASE READ!!! Hope this may be helpful to some of you! Melanie XXX
  17. You're a caring person, Cathy...it's nice to meet people as kind-hearted as you. XXX

  18. It's a pleasure to have met someone with such a wonderful outlook as you! You're up there with "The Best!!!"


  19. This must be so devastating for his family, but I'm glad they are bringing this disease to public view. It makes me more thankful that I saw a GP who was able to put all my symptoms together & immediately referred me. This is not always the case over here. Most GP's treat symptoms, they do not look for an underlying cause, that's the way it is over here, they are constantly under pressure to reduce the costs to the NHS, so any referral to a specialist has to be for a DAMNED GOOD REASON! For diagnosis they look for the lowest common denominator, this goes for all diseases, the simplest illness is the one they DX. My father was DX'd with asthma at 62, he went on to have a stroke, then passed away suddenly with a heart-attack at 69. It turned out, when he was opened-up, he didn't have asthma at all, his lungs were fine, his arteries were clogged which caused his breathing difficulties, and he could have had an operation to resolve this. My father-in-law died from pneumonia, because when he had a chest x-ray, they said he had a massive cancerous lung tumour which was inoperable, so didn't offer any kind of treatment. When he was opened up, there was no tumour, he also died needlessly. That's just the way it is over here, it varies from region to region though, we call it the Postcode Lottery, it's difficult to see how it will ever change. Melanie XXX
  20. Well that is just typical of our health system! Dr's tell you nothing over here so when they do make mistakes it's easier to wriggle out of it. It's the "Mushroom Syndrome" as Jo has said before...patients get kept in the dark and fed on S***!!! It may be "free" healthcare but it can cost dearly. Melanie XXX
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