Just because I asked lots of questions (as you do) like everyone else on there, I got moaned at for doing so, and they have, without warning, removed me from all the Groups, and one particular "british" Admin (who befriended me because of how poorly I am and she was where I am today) also blocked me. She said she wasnt going anywhere and would help me through things because i live alone. She then mails me on behalf if other admins and then "poof" i am gone from all grps and she blocks me from messaging her.
What an evil thing to do to someone who is ill, housebound and needs groups because it's their only lifeline. It's like pulling the plug from a life support machine.
I also questioned a couple of their protocols and they didnt take kindly to that at all. They said if i didnt follow their protocol for each area i needed help with, i wouldnt get well!! I posted in every subsection of their grps as i was supposed to as i have lots of questions on different aspects. Unfortunately i duplicated a couple of posts due to brain fog, they shot me down on that despite my apologising. They didnt like me commenting on other people's posts. I felt spoken down to on several occasions by most of the admins. Seems you cant have an opinion on their page! I used to be an admin myself on a FB group so i know its difficult but i never went power crazy with it, like some of them do on there.
If their protocols work for everyone, why are there so many members posting on there daily struggling!!!!!
Just proves how much they really care doesn't it.
Still, I was warned about them and should have listened
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Jefner
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Jefner, I know that you are angry, sad disappointed and let down by the very people you trusted with your indepth feelings.
In time, when you recover from this experience, you will come to a realization that a lot of people just do not care enough about the impact of their words or actions.
You have so many caring members on here who know exactly what is going on in your life on a week to week basis.
Cherish them Jefner, and please don't waste your precious time on people who treat you, or other ill people so disgustingly.
Sorry to hear that Jefner. I thought the same about a certain fb group (not thyroid but adjacent) where, despite the convo being about medication (so what you'd assume might be science-based), the admin seemed very focussed on positive thinking, so if someone asked a question like 'how can I make this work better for me' or 'how long does it take this side effect to go' she'd be on you like a tonne of bricks about how important it was to only discuss positive things and she couldn't help you unless you were ready to help yourself etc. I was utterly disgusted watching vulnerable people being scolded like children. Some folk treat these groups like their own personal fiefdom.
To be fair, they're pretty dogmatic on their own website so I'd expect nothing less! God I do hate that way of thinking though. If everyone's recovery is so fragile it can be easily upended by one person asking a question or presenting a different view, well I don't really want that. I choose a more robust recovery that stands up to scrutiny.
Can you please specify which group you're referring to, because not all of them are like that, and it would be a shame to wrongly trash a helpful group.
Are you referring to one of the Yahoo groups - the NTH group or one of the other groups (e.g. the adrenals or RT3 group)? I've never had issues with the NTH group, they are very nice and allow all sorts of discussion, but I've had the same experience with the other groups - I didn't get blocked but I did get moderated for asking too many questions and challenging a few things they said. The latter ones used to be associated with sttm but no longer are. Or was it a FB group?
Ok, I went back to look and maybe I'm getting it mixed up w a v similar group. I'll pm you.
So sorry to hear of your horrible experience Jefner! Totally agree with what the others have said. I've only joined this forum recently but have found it to be full of very useful advice and links, plus people have been lovely. I've seen my share of Internet bullies and also experienced 'only say positive things!' with the implied 'or else!'. It is all about power and control. We should be able to question and discuss information freely in a pollite and adult way without fear of repercussions. Just my two penneth!
How awful to be treated like that. Don't dwell on the thoughtless actions of them though as this site is very supportive and I've been advised to post here when my NDT arrives as I won't be following sttm protocol ...
Getting blocked for asking questions? I'm literally shaking my head in disbelief
Just been chatting with a lady in paul robinsons grp. They did the same to her without warning. Didnt like the "its our way or take the highway" approach tbh. I questioned a couple if their protocols and the admins didnt like it and warned me
Jefner: Just wanted to flag up that your post here can easily be found by searching 'sttm groups' on google - not sure if you want it to be more private, in which case I recommend making it a hidden post.
I've been treated like that on our local 'Streetlife', would you believe!
They kept deleting my posts which were far more innocent than a lot of them were, so after I got so fed up with it that it made me leave I wrote to tell them what I thought of them. A load of boring old farts!
Internet bullying is the worst thing on earth because you have no idea who you are dealing with.
can you pm me the name of the group please so I can avoid
Fakebook annoys the hell outa me. Deleted my account a long time ago. Stuff them if they have that attitude. Bet you are not the first, won't be the last either.
I wouldn't mind if I had been disrespectful in any way but I hadn't. They are so hell bent on "their" protocol and won't entertain anything else. Well if it works why the hell are there hundreds of people on there every day posting that they are having problems with their protocol?????
I found their website too busy and confusing so I didn't bother. People on here are much nicer and more approachable. I've learnt so much on this forum in the past 3 years and all of it good.
I am very sorry that happened to you Jefner. I asked a perfectly reasonable question once to an analytical organic chemistry group. I was trying to understand the deiodinisation(sp) process when T4 changes to T3 and in particular what was the name of the bond which holds the forth iodine atom to the T4 molecule. I was hailed a heretic for about a week with horrible insults being thrown my way. That went on for days until a very knowledgeable person (probably a scientist with a thyroid problem!) replied with the answer - and then a number of other people found that very interesting and started a good discussion! In the meantime however, it made me feel sick and as if a knife had pierced my heart! I still do not know what made the first people so aggressive and insulting, perhaps I had highlighted their own ignorance and it was not until one of their own had endorsed my question that they joined in positively.
I have no answer as to why people are cruel, just know it happens to many people who don't deserve it. People with thick skins "get over it", for people who are sensitive it takes a lot of time. We are on your side Jefner, try and forget it.
I see you found out the hard way about that group to. As I said it's either their way or take the highway. Scum as far as I am concerned and as you said they won't deviate on their so-called perfect little ideas
OMG, I was going to start a post similar to this but you saved me time. I am 100% with you and happened exactly the same thing. I have lot of questions and only because I tagged one of those evil admins I was retired from not only one but ALL their FTPO groups. Later I found out these people are actually giving totally whacked opinions on thyroid things and even suggesting ppl to raise their NDT to a dangerous levels as 3-5 grains. They are so adamant and so fulled of themselves that they claimed to be the anti-endos or "stupid meds" just to be actually dogmatic groups.
Someone looking for thyroid advice can go through the following stages when they land on internet forums dispensing advice:
1. The Journey Begins – don’t feel well
2. Seek Help – most likely from a medical doctor
3. Disappointment/Disillusionment – not getting any better, and may have spent a fortune on doctors
4. Seek Alternatives – find thyroid internet support/chat groups
5. Hope – maybe their protocol will work
6. Caution – some will be wary and questioning, but others go straight to
7. Enchantment – buy-in, assimilation, commitment to protocol
8. Love – they experience some improvement after starting and want to share the process with everyone and give advice, just like they were given; some become the “new” moderators
9. Plateau/Decline – as time passes, improvement stops and some get worse as they take their dosages higher and higher, thinking more is better
10. Crash and Burn – now worse than before any treatment
11. Angry/Disgusted/Frustrated – what am I doing wrong?
12. Blame The Patient – groups/moderators blame the patient for not getting better; it is not that their protocol is faulty, but that some other electrolyte or hormone is too high or too low and preventing thyroid optimization
13. Realization – I am so messed up, and I’ve been had
14. Hit Bottom – Now what?
15. Questions and No Answers – some who complain or question the protocols are actually “booted” out of the group and left to fend for themselves; some migrate to other groups still in search of answers. Sadly, many actually blame themselves for not “correctly” following the protocol. Very few consider that the protocol itself could be flawed and might not work for everyone, or that it is so complicated, that few can make it work.
Be wise where to choose the right info. My two favorite sources are healthunlocked.com and tiredthyroid.com/blog i strongly recommend that blog.
My experience with those evil FTPO groups was they invented that famous "Pooling" thing that it really has no science nor basis. So I ended up raising my T3 cytomel medicine just to "flush" my RT2 and it made me sweat as a horse, and get palps. I even spent tons of money that I didn't even could afford on stupid labs every 3 months since they don't give you advice without them. I remember that summer of 2016 was my worst miserable summer ever just because these stupids. Yes, I can agree sometimes Endos are stubborn but these people want to put all people in the same basket and every body is like universe. Every person has different needs, come from different background, different eating lifestyles, and a huge etc. The confusion is horrible. And recently the STTM wrote an article saying they are not associated to those FTPO groups that claimed to be part of them. Who knows. I find that really awkward.
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They should be ashamed!! I'm glad you have this group and this great bunch of people here.
Wonderful appointment with endocrinologist in Harrogate!
Do GPs PCTs and Labs all avoid the T3 testing to avoid treating it if low?
