Why are people "just left"
Moderator: talkhealth
Why are people "just left"
Is there a treatment for Hypothyroidism ??? Should everyone expect to lead a normal life ie. Work for a living, have social life
Why do docs leave people to feel suicidal and lose everything?????????
Why do docs leave people to feel suicidal and lose everything?????????
Re: Why are people "just left"
The same reason they are stopping my posts, refusing to answer any question I have posted and refusing to tell me why. I had huge hopes for this forum and did not expect unfairness, lack of caring and the sort of behaviour that has been displayed here.
People are just left because the experts don't seem to care and that appears to be reflected everywhere, it's a nightmare and meanwhile we are all just left to work our own way through and lose everything we hold dear. When will they learn? judging by the behaviour on this forum - never. I am really distressed by what they are doing to me on this forum and an not getting any answers - just keep getting my posts removed.
People are just left because the experts don't seem to care and that appears to be reflected everywhere, it's a nightmare and meanwhile we are all just left to work our own way through and lose everything we hold dear. When will they learn? judging by the behaviour on this forum - never. I am really distressed by what they are doing to me on this forum and an not getting any answers - just keep getting my posts removed.
Re: Why are people "just left"
It's awful Jeannie. It really is.
Prior to my thyroidectomy I was a higher rate tax payer, that's all stopped, so tax loss for the government. I have been round all the usual specialists trying to get to the bottom of the awful symptoms because the endocrinologist said they were not thyroid related. That must cost a lot. I don't claim benefits but the illness is putting a strain on my marriage. If that falls apart I will have no choice but to claim benefits for myself and my son as I currently can't work. That's more money. The £1 a month cost of thyroxine is not such a bargain when you add up all the above costs, to the NHS and the benefits bill.
I used to contribute to the community in a volountary capacity and can no longer do that. I have no social life really, maybe a night at the theatre once in a while, that's about it. I can't read as I have no focus and the brain for is so bad I struggled to help my seven year old son with arithmetic homework yesterday. I have two degrees and this illness has rendered me useless. Again, a waste of all that funding to study.
The true cost of this illness is immense.
Prior to my thyroidectomy I was a higher rate tax payer, that's all stopped, so tax loss for the government. I have been round all the usual specialists trying to get to the bottom of the awful symptoms because the endocrinologist said they were not thyroid related. That must cost a lot. I don't claim benefits but the illness is putting a strain on my marriage. If that falls apart I will have no choice but to claim benefits for myself and my son as I currently can't work. That's more money. The £1 a month cost of thyroxine is not such a bargain when you add up all the above costs, to the NHS and the benefits bill.
I used to contribute to the community in a volountary capacity and can no longer do that. I have no social life really, maybe a night at the theatre once in a while, that's about it. I can't read as I have no focus and the brain for is so bad I struggled to help my seven year old son with arithmetic homework yesterday. I have two degrees and this illness has rendered me useless. Again, a waste of all that funding to study.
The true cost of this illness is immense.
Re: Why are people "just left"
My daughter told me about this forum. I offered to have at look at posts for her as my gut instinct was that it would be a waste of time, distressing and unhelpful for her to read the posts based on her awful experience with the NHS. Sadly that is certainly the case. Most questions are not being answered and the ‘experts’ are showing how out of touch they are. Abroad, treatment with T4/T3 or natural thyroid is readily offered if thyroxine does not work. In the UK patients are fobbed off and told that their problems cannot be due to their thyroid.
It has been a truly distressing week following this forum and reading about how many lives are being ruined by the uncaring NHS.
It has been a truly distressing week following this forum and reading about how many lives are being ruined by the uncaring NHS.
Re: Why are people "just left"
All of my posts are being deleted and I have no access to private messages, I will be contacting the press if this continues. I am really distressed by this forum - at least have the common courtesy to tell me why you are stopping my posts.
Re: Why are people "just left"
I am so sorry for you ignored. It's shocking how your posts have never been answered. I hope you join the forum that helped so many (google thyroid and uk) as no one should be so blatently ignored and left like this. It's cruel beyond belief.
Re: Why are people "just left"
This forum must surely be a wake up call to the experts. Usually the forums on here get less than a hundred posts and not many topics..... When I last checked there were 120 topics and over 600 posts....
If we were all happy with the current protocols there would be fewer posts. On our own we are left to challenge the flawed treatment, thinking it's our imagination, but collectively we have a voice.... We can't all be imagining our symptoms.
Some of the experts have not posted at all, I imaging that they are overwhelmed at the amount of resposes there has been on here. To be fair the experts seem to know more or less what they are doing..... but their faith in the GP's to undertake the requied tests, and then interpret them correctly is misguided.
This forum proves that doctor education is needed and the British thyroid forums - Thyroid Patient Advocacy and Thyroid UK are both in good positions to help educate the doctors. Between them they have more than 5000 members, all with similar stories to the ones we have heard on this forum. Additionally Thyroid Patient Advocacy, has a register of people who can testify that their symptoms were resolved when they were given Liothyronine (T3). This refutes the results of the tests which concluded that T3 was ineffective.
G
If we were all happy with the current protocols there would be fewer posts. On our own we are left to challenge the flawed treatment, thinking it's our imagination, but collectively we have a voice.... We can't all be imagining our symptoms.
Some of the experts have not posted at all, I imaging that they are overwhelmed at the amount of resposes there has been on here. To be fair the experts seem to know more or less what they are doing..... but their faith in the GP's to undertake the requied tests, and then interpret them correctly is misguided.
This forum proves that doctor education is needed and the British thyroid forums - Thyroid Patient Advocacy and Thyroid UK are both in good positions to help educate the doctors. Between them they have more than 5000 members, all with similar stories to the ones we have heard on this forum. Additionally Thyroid Patient Advocacy, has a register of people who can testify that their symptoms were resolved when they were given Liothyronine (T3). This refutes the results of the tests which concluded that T3 was ineffective.
G
-
talkhealth
- Posts: 1783
- Joined: Thu Nov 04, 2010 3:29 pm
Re: Why are people "just left"
Hello to you all
We are removing posts that are inappropriate for this forum.
All of us at talkhealth have a huge amount of empathy with the very ways in which you describe your treatment and experiences in your posts. However our online clinics have been set up to offer patients the opportunity to talk to a panel of experts about their medical questions and concerns NOT to use the forum to have a moan generally at the detriment of those who genuinely need and value this rare opportunity to talk to medical professionals.
As such, this is why some of your posts where individuals are clearly 'having a rant' have been removed.
We would just like to reiterate that talkhealth remains independent at all times and is only the platform that enables NHS Choices, our charities, experts and patients to come together to discuss medical issues on a range of topics on a voluntary basis.
We are removing posts that are inappropriate for this forum.
All of us at talkhealth have a huge amount of empathy with the very ways in which you describe your treatment and experiences in your posts. However our online clinics have been set up to offer patients the opportunity to talk to a panel of experts about their medical questions and concerns NOT to use the forum to have a moan generally at the detriment of those who genuinely need and value this rare opportunity to talk to medical professionals.
As such, this is why some of your posts where individuals are clearly 'having a rant' have been removed.
We would just like to reiterate that talkhealth remains independent at all times and is only the platform that enables NHS Choices, our charities, experts and patients to come together to discuss medical issues on a range of topics on a voluntary basis.
Re: Why are people "just left"
Dear TalkHealth
I do take your point but you said the forum was a chance for us to discuss our concerns with specialists and this has rarely happened. I have posted several questions, not rants, in this section and have not received one solitary answer from a specialist. I would even be happy to receive an answer saying they don't know why I have those symptoms. Any answer is acceptable really. Posters are rightly fraustrated that they are being ignored. It looks like very few are being answered today and the clinic was closed most of yesterday and all Sunday. It's not what was described and then we are unable to view the past questions/answers when it is closed, again not helpful or useful.
I think it's unfair to bat this back to posters being unreasonable. The clinic is not really living up to it's billing.
I do take your point but you said the forum was a chance for us to discuss our concerns with specialists and this has rarely happened. I have posted several questions, not rants, in this section and have not received one solitary answer from a specialist. I would even be happy to receive an answer saying they don't know why I have those symptoms. Any answer is acceptable really. Posters are rightly fraustrated that they are being ignored. It looks like very few are being answered today and the clinic was closed most of yesterday and all Sunday. It's not what was described and then we are unable to view the past questions/answers when it is closed, again not helpful or useful.
I think it's unfair to bat this back to posters being unreasonable. The clinic is not really living up to it's billing.
Re: Why are people "just left"
Talk Health
Thank you for responding, however, I would take issue with some of your comments, I do not see myself as having had a rant but I have asked why the experts have been ignoring me and failing me yet again. I don't understand why you keep removing my posts and it seems to me that you do not understand the cost of having spent a whole day writing out my personal life story in order to try and get the experts to answer and at least give an opinion. They have not done this - have you any idea just how hard it is to write your life story on a public forum just to try and get the sort of help you should be entitled to on the NHS and can't? It's personal stuff, it's embarrassing needing to share it and it's painful to me personally. I am a very private person normally and would not have chosen to do this had I known how you would treat me.
You have not been independent, you have removed my posts for no good reason, you have deprived me of access to personal messages, you have failed to respond to my many requests as to why you removed my post. After all this I laid my soul bear on this forum to be ignored and to be treated like some recalcitrant school child. Have you any idea what this does to people?
I am deeply distressed by my experiences on this forum, you have left me feeling that you just don't care and they manner in which you have treated me shows no independence or fairness or understanding whatsoever, it was a rare opportunity to talk to the medical profession - one that you offered and then took away.
Thank you for responding, however, I would take issue with some of your comments, I do not see myself as having had a rant but I have asked why the experts have been ignoring me and failing me yet again. I don't understand why you keep removing my posts and it seems to me that you do not understand the cost of having spent a whole day writing out my personal life story in order to try and get the experts to answer and at least give an opinion. They have not done this - have you any idea just how hard it is to write your life story on a public forum just to try and get the sort of help you should be entitled to on the NHS and can't? It's personal stuff, it's embarrassing needing to share it and it's painful to me personally. I am a very private person normally and would not have chosen to do this had I known how you would treat me.
You have not been independent, you have removed my posts for no good reason, you have deprived me of access to personal messages, you have failed to respond to my many requests as to why you removed my post. After all this I laid my soul bear on this forum to be ignored and to be treated like some recalcitrant school child. Have you any idea what this does to people?
I am deeply distressed by my experiences on this forum, you have left me feeling that you just don't care and they manner in which you have treated me shows no independence or fairness or understanding whatsoever, it was a rare opportunity to talk to the medical profession - one that you offered and then took away.
Join with Google
Join with Facebook