Thyroid Disease and Freedom of Speech

[Guest guest]

Hi everyone,

This is long!

I've been a member of various 'thyroid support' forums over the years

and joined this group most recently.I am pleased that freedom of speech is

encouraged here and I honestly haven't come across any sniping or nastiness to

date.We all seem to be working towards the same goal...getting help for our

thyroid issues.

However I am dismayed that other forums(which shall remain nameless)

certainly don't encourage freedom of speech and seem to rigidly adhere

to a strict dialect which seems almost made up to suit the moment.I

understand there has to be certain rules and conditions but I have noted

desperate people are being bullied,derided,chastised,banned or having their

threads'locked'because their problem doesn't fit in with the clique

fraternity.It just makes me so angry.Where is the humanity?

I think seasoned posters who are now well and spend their spare time

apparently 'helping others' forget what it is like to be in the depths

of despair with this disease.And if I were to complain to the moderator of this

other forum I know my post would be deleted straight away because that is what

they do!!!

Topics such as self-medicating particularly seem to be a bone of

contention but it is something that even the most violently opposed

individuals may have to consider one day and that isn't restricted to

'thyroid disease'.Adrenal discussions seem to be discouraged too when it is an

integral part of thyroid disease and inability to tolerate

replacement hormone.

And dare I say it 'suicidal depression'(whisper it)is another subject

frowned upon because it 'upsets other members.' I cannot accept that

people who are honest enough to share these feelings (as a result of illness)

are made to feel worse because it does not suit the acceptable criteria.I think

most of us here that have been fighting to get our health back for years know

how mentally low this condition makes us.

I would like to think ALL thyroid communities/organisations are working towards

the same goals but atlas I'm not so sure.There seems to be certain groups that

have an ulterior motive.Their intention seems to be to undermine 'forward'

thinking groups that welcome free speech for all and advocate treatments perhaps

deemed'controversial'. They have become so PC it is stifling and predictably

boring.They tend to suggest things like " If you have any concerns please visit

your doctor etc etc. "

What do others think? Do we really have to check what we are saying

24/7? Is it inappropriate to admit to suicidal feelings,wrong to admit to

self-medicating,irresponsible to suggest another poster is hypo with a TSH over

5?

Would be interested in hearing your views!

[Guest guest]

HI PEARYPEARY

Up until I joined this group I was made to feel by Doctors that I was imagining

my symptoms, and made to feel that I was mental. I have had to undergo being

told that I was a hypochodriac, placed on antidepresent drugs, tranquilizers and

antisychotic drugs, and ended up taking two overdoses due to this attitude by

Doctors.

It has helped me to know that I am not alone through this group, as was the case

when I had cancer, and in turn it helps to talk to others who have suffered on

the same lines.

No Doctor had or has sat down and really explained about thyroid illness.

I felt that there was a family illness but no complete matches, and in

desperation having already obtained my records (some of which I am appalled at

the remarks), but I found that the hospital where my Mother was treated also

still had her records, and things began to fall into place. My Last GP although

he had some funny ways about him, but not just with me, he did take note of my

Mothers records and other family disorders and was able to say that the thyroid

problem was inherited on my Fathers side and on my Mothers caused by TB of the

neck when she was only 5.

It has helped too that many others in this group have not been treated that well

either by their GP'S, and it has helped in the fact that our symptoms are not

imaginary and that we are not mental or hypochondriacs.

Perhaps it would do Doctors a bit of good if they looked at our forums which are

more open and to the point than other forums. They could see that we all suffer

similarities, and it may help to see how some have been treated (not very well),

and to see in turn how we view them due to how they treat us which in turn makes

their job harder, and to end this--A GOOD DOCTOR/PATIENT RELATIONSHIP GOES A

LONG WAY TO IMPROVE A PATIENTS HEALTH. Perhaps oo one day they will see that

treating patients with just thyroxine alone is not doing any good, and upsetting

patients in turn causing anger is of no use either.

Kathleen

>

> Hi everyone,

>

> This is long!

>

> I've been a member of various 'thyroid support' forums over the years

> and joined this group most recently.I am pleased that freedom of speech is

encouraged here and I honestly haven't come across any sniping or nastiness to

date.We all seem to be working towards the same goal...getting help for our

thyroid issues.

>

[Guest guest]

Hi Peary

We appreciate that different people have different problems and

most of these people need answers (where possible) to their questions relating

to thyroid and associated conditions. They need support from forums they can

trust will help them. We decided to moderate this forum to keep such sniping,

nastiness, bossiness and playing 'god' at bay - and as you can see, it

works.

The way to get over this is simple - UNSUBSCRIBE and tell those

poor folk who are being bullied, derided, chastised, banned or having their

threads 'locked' because their problems don't fit the clique fraternity to go

with you. You wouldn't wish to be responsible for the poor thyroid forum

owners or their moderators having a heart attack every time you mention self

medicating would you, or asking advice about those darned adrenals. Life is too

short, and who in their right mind wants to be treated by such pathetic bullies

in this way. You know what, I think they are like this because they don't know enough

about the subject to be able to enter into any meaningful conversation, so they

use the Miss Bossyknickers approach to keep your questions under control. Thou

shalt not…..!

These idiots really don't care that there are over 250,000 in

the UK alone who are being denied the treatment that would help them regain

normal health - are they REALLY happy to leave these poor folk in such a state???

Can't they see that they need all the help thyroid support groups can give them

to help them down the self-treating route safely and effectively. This is what

we try do on TPA.

I am fully aware these groups don't like what TPA does, and to

be honest, I don't care - perhaps one day they might sit back and really listen

to what we do, instead of trying to make people believe that helping people in

the way we do is 'dangerous'. I have learned to let them get on with whatever

turns them on if that's what lights their candle.

Whatever they try to make people believe, TPA does NOT advocate

self-medication. However, we do recognise that there are those who have been

driven to do so to regain their health - but the decision to self-medicate is THEIR

decision and their decision only. This is their life, their right and we

respect and understand such a decision.

On TPA, I am very proud to say that we work as a team, totally

dedicated to helping those who need it - in whatever way they need it. We

ensure that members have access to information that is safe, and effective.

We have 3 medical advisers, a list of almost 70 endocrinologists

who will treat using T4 and T3 or NDT which we make readily available to all

members. We have disclaimers on every email and our web site. We have a stack

of information in our web site, FILES and LINKS to help all manner of

associated conditions that go along with being hyperthyroid, much of which is

backed with scientific evidence. We rarely have need to ban members or messages,

but if this happens, it is because they have become intent on causing problems

for our group. Thankfully, a very rare event. If a message is off topic, we ask

for it to be forwarded to our Chat Forum where members are allowed to talk

about anything and everything - other than thyroid.

These organisations you mention refuse to work with TPA - we

know, because we asked them why, but they refused to tell us. They are just

happy to gang up in an attempt to try to persuade whoever wants to listen, that

the reason they will have no association with groups like ours is because we

" advocate self-treatment " and that we are 'dangerous to patients' -

with the potential to cause great harm to our members. These are worryingly sad

individuals, and they should NOT be running thyroid support groups as to my

mind, they are causing more harm to those suffering and giving a bad name to

the thyroid support network throughout the world.

About self-medication, read Dr Peatfield's short statement he

made about this and he wrote this specifically for our TPA web site and I bet

the 'gang' never bothered reading it http://www.tpa-uk.org.uk/self_medication.php

..

I think that you will find that those who are violently opposed

to discussing self-medicating, the choices of treatment for those with

symptoms, treatment of adrenal fatigue, suicidal thoughts etc, who revert to

bullying, deride, chastise, ban or lock threads to discourage further discussions

is because, quite simply, they are unable to discuss these issues in depth, as

they know very little about them and are incapable of doing the required

research. A nice cop-out, and acting as mother superior into the bargain. I met

kids like this in the school playground. Perhaps they were the kids (

I find it quite appalling, that any thyroid forum that calls itself

a 'Support Group' should discourage and stifle discussions when somebody is

experiencing suicidal tendencies because 'it might upset other members'. That poor

member is obviously desperate to talk and try to find answers which she will

never get from forums run by these mini Hitler's. As you say, it must have

taken a lot of courage for her to even broach this subject. Perhaps the

people who run these forums are the one's who feel 'uncomfortable' with such

topics because they have a complete lack of understanding of the needs of

others.

You really don't have to stick around them Peary - it's a waste

of your valuable time and you will only become more upset and frustrated. I

left them long, long ago, but I do give a little smile occasionally when I

realise how much influence support groups like ours have on their every day miserable

lives. We obviously contribute in a big way to their busy lives in their little

judgemental chambers - so I guess they like us really )

Luv - Sheila

I would like to think ALL thyroid communities/organisations are working towards

the same goals but atlas I'm not so sure.There seems to be certain groups that

have an ulterior motive.Their intention seems to be to undermine 'forward'

thinking groups that welcome free speech for all and advocate treatments

perhaps deemed'controversial'. They have become so PC it is stifling and

predictably boring.They tend to suggest things like " If you have any

concerns please visit your doctor etc etc. "

What do others think? Do we really have to check what we are saying

24/7? Is it inappropriate to admit to suicidal feelings,wrong to admit to

self-medicating,irresponsible to suggest another poster is hypo with a TSH over

5?

Would be interested in hearing your views!

[Guest guest]

>Hi Sheila,

Yes,I probably should unsubscribe from the forum I'm referring to.I guess I hang around to try and point desperate folks in the right direction but by the time they've been told off for perhaps posting in the wrong place or mentioning a subject off limits I think they are so upset and shocked that they just disappear and never post again.Very sad.

I agree with what you said about certain organisations (which shall remain nameless again LOL) suggesting TPA promotes self-medication which is primarily untrue.It seems to be a familiar theme.And in a way they seem to misunderstand the term'self-medication'.And there are many different interpretations.A migraine sufferer who pops 8 ibubrofen a day could be described as self-medicating but to others they are just trying to get rid of their headache! I did read the article Dr Peatfield wrote and whilst some may not agree with his views I certainly do. And I don't want to be told off for it!

In the end I think it is a great pity that there is this divide because power is in numbers.I wish they could just wake up and see that what they are doing is damaging the cause.To promote better treatment for thyroid disease sufferers everywhere...

Regards Peary

[Guest guest]

>> Up until I joined this group I was made to feel by Doctors that I was imagining my symptoms, and made to feel that I was mental. I have had to undergo being told that I was a hypochodriac, placed on antidepresent drugs, tranquilizers and antisychotic drugs, and ended up taking two overdoses due to this attitude by Doctors.> It has helped me to know that I am not alone through this group, as was the case when I had cancer, and in turn it helps to talk to others who have suffered on the same lines.> No Doctor had or has sat down and really explained about thyroid illness.> I felt that there was a family illness but no complete matches, and in desperation having already obtained my records (some of which I am appalled at the remarks),

> It has helped too that many others in this group have not been treated that well either by their GP'S, and it has helped in the fact that our symptoms are not imaginary and that we are not mental or hypochondriacs.> Perhaps it would do Doctors a bit of good if they looked at our forums which are more open and to the point than other forums.

Hi Kathleen,

As I have now officially stopped attending my GP surgery I rely on thyroid support forums to stop myself going insane.Freedom of speech is certainly limited to a degree in a GP practise.It seems very little needs to be said and you will be told to go elsewhere.You only have to read the experiences of others to realise that there is something 'very dark' happening in the world of Thyroid Disease.

The questions must be asked "Why are so many of us treated appallingly? What is behind it and how can we change things so that future generations will not suffer as we have?"

You mentioned you obtained your medical records and you were appalled by some of the remarks.I have often thought about requesting mine but refrain from doing so because I think it would make me more ill.I wonder if my adrenals would ever recover from the experience.I can only imagine the utter tripe spread across the pages and would be tempted to tear them out!

That is a good point you made regarding doctors having a look at the forum.It should be required reading,but unfortunately most think they are above all that.I think they might be surprised at some of the intelligent,articulate postings!

Peary

[Guest guest]

Hi Peary

I would

go so far to say that these organisations are 'deliberately' choosing to

misinterpret the term ' self treatment', and try to make it look as if what we

are is doing is bad and dangerous - which makes them not only appear pompous,

but uncaring. Why would ANYONE want to run a thyroid support forum if they have

no intention of helping their members, telling them " see your doctor "

if they have a problem is pathetic. If it hadn't been for these misinformed

doctors, people would have no need to join such 'support' forums in the

first place. They should be doing everything possible to help all those who are

being left to suffer so unnecessarily. We try to ensure that anybody who has

decided they have no other option but to self - treat, has as much information

as possible, to enable them to do so in as safe and effective manner as

possible, knowing that we really do have more information available on our web

site and forum Files. Most NHS doctor are not even aware such information

exists, they know nothing about the associated conditions which need testing

for and treating. Wherever we can, we try to provide the scientific research to

such information, which again, many medical practitioners do not even know exists.

I guess if TPA went away, they would have little to moan about LOL!

Luv -

Sheila

…In the end I think it is a great

pity that there is this divide because power is in numbers.I wish they could

just wake up and see that what they are doing is damaging the cause.To

promote better treatment for thyroid disease sufferers everywhere...

Regards Peary

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.441 / Virus Database: 271.1.1/3114 - Release Date: 09/04/10

18:34:00