Why are you failing us again?
Moderator: talkhealth
Why are you failing us again?
I suspect you will censor or remove my post yet again - with no explanation but this is the last day to ask you anything so I am trying once again.
Dear experts
When I found this forum I posted some question asking why Endocrinologists have failed their patients. I am a long standing thyroid patient who has all the history of someone who has suffered from a lifelong thyroid condition. I have also made other posts asking you for help, I must have misunderstood, I thought that this thyroid clinic had been set up to offer us help and hope.
This forum has been closed more often than it has been open, the only answers I have for the continual locking of the forum is that it has been done to allow the experts to answer the questions of all of us who have spent our time posting here. I have held out in the hope that we could at least have a dialogue with some members of the medical profession. You need to understand that for many of us the medical profession has failed us completely and been content to sit back whilst we suffer with an illness that seemingly has no end and little hope. I keep being told that the experts have given their time voluntarily, a fact that keeps being pushed, I understand that and am grateful but don't you think that our time is also precious? don't you think that we have other obligations? these are hard to meet when you are ill. Have you not had any time over the weekend or in the evenings to spend answering our questions? Why did you agree to doing this if you were not going to take us seriously and for the short period of time that this forum is available to us at least make the effort to answer as many questions as possible?
The behaviour from this forum has done nothing to help, in fact so far it has achieved the opposite and left me feeling totally ignored once again, I felt that some hope was being offered by this forum and the fact that experts were on hand to offer help and advice.
The saddest thing about all this is that you are dealing with a group of patients who go through hell with this illness and the attitude we encounter from so many doctors who seem to think that for some reason rather than having a life we would prefer to be ill, miss out on life's opportunities and spend our precious time in doctors surgeries - I don't know how to convince you that this isn't the case. I don't know how to convince you that I need your help, clearly my posts have failed to make any impact with you and once again I am left to my own devices to fall back on my own resources. I'm not saying this is easy, my personal view is that medicine is in it's infancy with regard to the thyroid, in fact with all the major endocrine disorders, medicine simply doesn't properly understand it. Wouldn't this be a great opportunity to start with some thorough research? something here is being missed.
What I have concluded is that, just like others, this forum has failed us completely and I am really saddened by that, you offered a bit of hope but then you failed to deliver and I simply don't know why you have done that, it feels cruel. Experts, you have really let me down - why?
Dear experts
When I found this forum I posted some question asking why Endocrinologists have failed their patients. I am a long standing thyroid patient who has all the history of someone who has suffered from a lifelong thyroid condition. I have also made other posts asking you for help, I must have misunderstood, I thought that this thyroid clinic had been set up to offer us help and hope.
This forum has been closed more often than it has been open, the only answers I have for the continual locking of the forum is that it has been done to allow the experts to answer the questions of all of us who have spent our time posting here. I have held out in the hope that we could at least have a dialogue with some members of the medical profession. You need to understand that for many of us the medical profession has failed us completely and been content to sit back whilst we suffer with an illness that seemingly has no end and little hope. I keep being told that the experts have given their time voluntarily, a fact that keeps being pushed, I understand that and am grateful but don't you think that our time is also precious? don't you think that we have other obligations? these are hard to meet when you are ill. Have you not had any time over the weekend or in the evenings to spend answering our questions? Why did you agree to doing this if you were not going to take us seriously and for the short period of time that this forum is available to us at least make the effort to answer as many questions as possible?
The behaviour from this forum has done nothing to help, in fact so far it has achieved the opposite and left me feeling totally ignored once again, I felt that some hope was being offered by this forum and the fact that experts were on hand to offer help and advice.
The saddest thing about all this is that you are dealing with a group of patients who go through hell with this illness and the attitude we encounter from so many doctors who seem to think that for some reason rather than having a life we would prefer to be ill, miss out on life's opportunities and spend our precious time in doctors surgeries - I don't know how to convince you that this isn't the case. I don't know how to convince you that I need your help, clearly my posts have failed to make any impact with you and once again I am left to my own devices to fall back on my own resources. I'm not saying this is easy, my personal view is that medicine is in it's infancy with regard to the thyroid, in fact with all the major endocrine disorders, medicine simply doesn't properly understand it. Wouldn't this be a great opportunity to start with some thorough research? something here is being missed.
What I have concluded is that, just like others, this forum has failed us completely and I am really saddened by that, you offered a bit of hope but then you failed to deliver and I simply don't know why you have done that, it feels cruel. Experts, you have really let me down - why?
Re: Why are you failing us again?
I think it has actually been very cruel to offer suffering patients a ray of hope and then to crush them by leaving most questions unanswered.
- talkhealth
- Posts: 1783
- Joined: Thu Nov 04, 2010 3:29 pm
Re: Why are you failing us again?
Please see our reply here - viewtopic.php?f=185&t=2348
Re: Why are you failing us again?
I agree with everything that's been said here.
I've not been listened to for 10yrs.
I was told by docs and endos for 2yrs that i did not have a thyroid problem ( i knew i had ) eventually i collapsed, was hospitalised for 10 days and diagnosed with graves disease.
eventually had radioactive iodine ( biggest regret of my life ) and left for 6yrs with NO MEDS, endos said i was ok and did,nt need them !
the pain and suffering this has caused both physically and emotionally is unmeasurable and just cannot be put into words.
I have lost 10yrs of my life that i can never get back, i.m now seeing a private dr and just started meds ( private prescription, my GP will not fund it ) but i know i've got a long road ahead to get my health back on track.
I've not been listened to for 10yrs.
I was told by docs and endos for 2yrs that i did not have a thyroid problem ( i knew i had ) eventually i collapsed, was hospitalised for 10 days and diagnosed with graves disease.
eventually had radioactive iodine ( biggest regret of my life ) and left for 6yrs with NO MEDS, endos said i was ok and did,nt need them !
the pain and suffering this has caused both physically and emotionally is unmeasurable and just cannot be put into words.
I have lost 10yrs of my life that i can never get back, i.m now seeing a private dr and just started meds ( private prescription, my GP will not fund it ) but i know i've got a long road ahead to get my health back on track.