This is a PM I just received from a member who has since left the forum:
dont comment further on my post. youre very rude and up until your comment, its been a very positive and helpful experience for me. please keep your negativity to yourself. you have been reported !!
My comment was not a reply to the OP but to a comment by tattybogle about the dangers of going off levo even if you feel better initially. I said that one problem in this context is that some alternative doctors claim that hypothyroidism can be cured. So not directly related to the OP, but in reaction to comments about how people can first feel better when they go off levo, only to end up worse after some time. I explained to the OP that my comment was not meant for her but for Tattyboogle, and then I got the PM in italics above.
I like the fact that this forum is open to all ideas and opinions, but twice in two days I have seen members leave. One after apparently feeling ganged up upon because people contradicted her, and now one who felt that my comment to someone else´s reply was negative and unhelpful although it had nothing to do with the OP - which I also explained to her.
I find it increasingly difficult to know what to say and not to say on this forum as anything can be misunderstood and taken out of context. So, I´d appreciate some input from the admins on this.
Your many helpful replies and contributions to the forum are always welcome
On this particular post …..the point you made generally…..that many people can initially and temporarily feel better stopping/reducing levothyroxine, before becoming increasingly hypothyroid and eventually very unwell …….this really is extremely important point
I’ve said it before and don’t mind saying it again—a symptom of being incorrectly medicated for hypothyroidism can be paranoia.
When I’m undermedicated I can stop thinking rationally and often feel hypersensitive. Unfortunately, I don’t usually realise that’s what’s happened until after I’m back on a decent dosage.
It doesn’t sound like you said anything you shouldn’t, Hidden .
I concur! for example, how does one distinguish between anxiety caused by a wonky thyroid and anxiety due to being, well anxious? The same for 'brain fog'.
As someone who participates in several online places (forums rather than facebook, etc.), I too have received some unpleasantness. It can be upsetting, annoying, etc. It sometimes makes me wonder why I bother. But, when I think some more, I read and re-read what I wrote. If there is nothing untoward, where I can see the issue, I try to ignore the incident. If I see where I have mis-worded something, or been brusque, I am willing to apologise or explain. But if someone quits, I can't do that. They can never receive an apology or an explanation.
Most of us realise that communicating by simple text leaves a lot to be desired compared with face-to-face or phone. Mistakes happen. Especially if I am having an off day for some reason. That's why we can add emoji.
It seems that the member has made the mistake that some others make. The member who starts a thread gets notification of every reply, whether in direct response to them or replying to another member's response. I think the member who left thought that your response to Tatty was in response to their own post.
Don't worry about it. You did nothing wrong. The member who has left wrongly thought that your reply was for them.
I try to remember to name the member I am replying to at the beginning of my message to avoid any confusion.
Thyroid illness is an insidious disease it has the ability to thoroughly mess with the head!
We are all different and with so many members here it's inevitable that, rightly or wrongly, feathers will occasionally be ruffled.
I don't know to which post you refer but...
If someone misinterprets a post, takes umbridge or walks away they are possibly just having a really bad day and somebody is unfortunately going to be the target of their frustration.
Wrong place, wrong time!
Sometimes we just need to take a deep breath and just live and let live...
I don't see that you have any need to beat yourself up Hidden
As a fellow forum member I'd suggest that you just keep hitting that Reply button because I'm sure none of us here want to feel nervous about sharing our experiences!
PurpleCat71 your contributions to the forum so very appreciated. We all appreciate when the wonderful members share their experiences . I'm speaking for myself and others might agree to . I feel so Blessed to have this forum. Thank You.
Please keep up the excellent work. Where would we be without the superb advice freely given by such knowledgeable people as you and our other regular contributors and approved admin people . I know I would be very ill if I hadn’t found this beautiful place. I can’t believe some people but we don’t really don’t know what others are suffering from, it could be paranoia as already mentioned. Take heart and have a great day 😘
I want to thank all of you who replied for your unwavering support and kindness. This is the first time someone contacted me via PM to vent their anger, so I admit it was quite a shock to me. I realise we are all different and since we only "meet" online misunderstandings are sometimes unavoidable.
I think this forum is great as all opinions are welccome and we can discuss things both in public and privately. There is so much knowledge here, and we all have our own experiences which means everyone has something to learn from others.
I tihnk you were very brave to post this PerpleCat71. Im glad you did.
The power of the word when spoken though we also have intonation, situation and visual info such as facial expression, mannerisms that we show and can see, can still leads to misunderstandings. The power of the written word is much more open to conjecture because all of this is missing. And then when you add in replying not to the original poster but another member as part of the discussion on the thread it can confuse further if the reader doesnt see who you are replying to. (Not your fault!)Then you add the big factor that a lot of people are unwell and that is why they are on here seeking guidance, ideas to go forwards, then it becomes even more Scrambled & that is receipe for misunderstanding.
Its a great shame you got a PM with no chance to talk it through with the other party who just dumped the message on you and left. That feels very unfair. Im really sorry that happened to you.
People do disagree on here but that is part of the wonder as it leads hopefully to greater clarity of the best way forward......which is not always clear, not always linear or one option. I hope this doesnt put you off as I know Ive greatly appreciated your comments. Take care PurpleCat time for a g&t some relaxing time with loved ones and to know that other members on here appreciate your time and energy in contributing. Dont let it limit you as its all the sum total of contributions on here that make it such a fab forum.
Keep posting PurpleCat71! You'll never please all of the members of any forum however hard you try 😀 Health forums will by nature include overly sensitive folk.
I would just carry on as you have been doing PurpleCat71. Don’t let that person put you off. Good advice is always welcome and that’s what makes TUK such a wonderful group.For me if I don’t agree with something then I don’t agree with it and I would quietly go on my own way. Occasionally I’ve come across people on here who say they feel much better without levo but I doubt if that will last for long.
I don’t see any need to get offended and leave while being rude and offensive to someone on the way out and if people want to leave then that’s up to them.
I think your great! Don’t worry - some people are looking for an echo chamber not constructive advice, so don’t take to heart. Your contributions come from a good place and I have had the pleasure of liking them on more than one occasion. 😘👍
I’ll leave it open, not putting your name at the top then if anyone reads this and accidentally thinks I’m replying to them they can get ‘buffed up’ too! LOL!
it's inevitable our 'tone' will sometimes be misinterpreted when people are just reading black and white words on the page, without the other clue's we use to communicate clearly. Misinterpretation of the 'tone' in replies happens to everyone at some point,..... but if someone just leaves without sticking around to clarify things ,then it's a big clue that there's 'something else' going on with them on that day which goes beyond the words we wrote.
And we can't do much about that after they've chosen to go.
People 'run away suddenly ' from social media for all sort of reasons that have more to do with whatever they were dealing with at the time ,than with whatever we wrote.
If everything else had been calm /balanced in their state of mind that day , then ...... regardless of whether they realised a reply was meant for them or not , and even if they mis-interpreted it as "blunt / intended with rudeness" , rather than "simple statement to clarify who the post was to" ..... it ought not have resulted in them leaving .. so the 'leaving' is not about your reply .. it's about the 'something else'
If we are on here regularly enough, we get to know what each others 'means' by their writing style so we fill in the 'intentions' that are missing from black and white text.
e.g I'm often sarcastic while trying to be funny , and everybody who 'knows me ' realises i'm just trying to be funny , but my tone has sometimes been totally misunderstood by people who haven't been on regularly. As a result i've taken to putting a after any comment i think might be taken the wrong way by someone who isn't used to my way of writing .
On the one hand .... yes , It's right to take the time to consider the effect our choice of words might have on people who can't see our face, and ask ourselves " did my words have a part in whatever bad feeling just happened there, and would it have been more helpful if written it in a different way, or perhaps not written it at all."
But on the other hand ..... For someone to 'take the hump' and dump a PM on you, then just 'vanish' leaving you feeling implicated in their leaving , when there is NOTHING in the wording of your replies to that post that remotely justifies the PM or the leaving... well , let's just say <hidden> ought to be doing a bit of their own 'self-reflection' about the effect their words might have on people they don't know .
Carry on being 'you' .... we all bring something different to the party, and our individual styles are what makes it a good party.
The time to worry is when all the people who know you properly start saying 'you're out of order'....
if i ever become 'out of order' on here , i hope those of you who 'know me well' will say so.
Tattybogle what a lovely reply. I personally haven't found you to be sarcastic. I like humor it helps to lighten gravity and worry. Please dont knock yourself! Hugs. I will echo you though with please let know if I ever overstep the mark. Its never my intention
Hugs to all the lovely people on here -the support & kindness offered on here restores ones faith in human beings! 💕
Ha! I think all health forums should come with a health warning Purple😄 They are hazardous places at times, especially if your blood pressure is already high!
I'm on a couple of other thyroid related abd other health forums, and I have to say I think this one comes up as the most consistently 'mellow' in tone. Well actually that's not true, because one of the others I'm thinking of is, and that's only because if you contradict the accepted wisdom too much, the moderators will cast you into the Phantom Zone al la Superman style, before you even get to say 'delete membership' or 'banned'. So you proceed with deferential caution, none of this reply after reply, and debate going on for double digits which happens here.
But I would say the tension is actually a good thing for several reasons 1. It shows the forum is active and lots of people are engaging 2. People are bringing lots of different areas of knowledge and experience to the table, which doesn't always align and that can be good, it's how advances in understanding are made 3. People feel relaxed enough to challenge ideas and be challenging 4. The moderators aren't heavy handed.
If you look around some of the other health forums available on HU you see that the same thing happens in some of those. Always the very active ones. I've seen some conversations that are brutal, enter at your own risk those. The one exception might be the Fibromyalgia forum, where genuine sweetness and light seems to always prevail. I've never seen any clashes there except during certain controversial topics which members here might be aware of😄
As has been said already, factor in the reality that many if us are ill and you are always going to get some friction. Always. I have typed before thinking and caused offence, I have been a bit taken aback by an abrupt reply or, worse no reply! I give people PMs who forget to PM a thank you and I'm SURE with my brain fog and bad memory I have done the same.
With regards to feeling better off levo: I actually sympathise with the aggrieved poster to a degree. I myself got to a place with it a few times where I was slightly paranoid (it makes me mentally unbalanced, and very low) and sick of it, and I stopped taking it. Came here one day and there was a thread started by someone with a topic along the lines of getting better 'naturally' I was very happy to see the thread. Selective bias fully at work.
I think I mentioned I had stopped and a couple nice forum members must of tried to say something reasonable like : But are you taking all your vits? And have you tried adjusting dose? etc, which all sounded like out of touch nonsense at the time. I rebuffed the advice. I wasn't rude just totally locked into my way of thinking. I wasn't going to listen. I was ironically very ill.
I carried on with no levo. Sure enough, I eventually crashed quite badly. Actually I should have been in hospital. When I started having blackouts and my breathing would momentarily stop, and I collapsed a few times, I had to take a massive dose of Levo over a few hours to stop me from passing out and more to get me through the night.
I realised then I would never survive without meds. No meds and I will eventually die. Whether levo only, or ndt/t3. And that is actually a major thing to grapple with mentally. And frankly, horrible, since you realise you always need a supply of meds at hand. I'm asthmatic so used to the idea of always needing an inhaler at hand, and yet inbetween a rare asthma attack, I live. With thyroid it's different. It's rather crucial. Your wellbeing is tethered to the meds. I'm not surprised people reject the idea and get angry when hearing it, especially when feeling often worse than they did before taking meds. Logically, you imagine you can go back to that place where you felt off but not terrible.
But you often can't go back there.
Finally you can't take responsibility for someone's else's response if they don't even allow you to apologise! And if people feel 'ganged up on' they should say, because misunderstandings happen. Mind you, I apologised to a poster once by PM and invited them to talk to me about it and that person just blanked me anyway! Now that's on them not me.
I can sympathise with people who want to come off thyroid hormone when they fail to feel better on it or even feel worse.The message that I try to get across, though, is that thyroid hormone replacement itself is not the problem if you have hypothyroidism (especially since doctors are unlikely to prescribe it until you are overtly hypothyroid), but the problem is the type of hormone replacement you are on and/or the amount of hormones you take, as well as other factors influencing how it is absorbed and used by the body. As far as I know, except in some rare cases, thyroid disease is a chronic condtion that can be managed at best but not cured. The OP yesterday took this as an accusation that she was thinking that, whereas I was replying to a post by another member stating something that I agree with; that is, that stopping thyroid hormone replacement will eventually make you ill, even if you feel better initially. And I added that one problem is that some doctors who work outside the system claim that they can cure thyroid disease, including Hashimoto´s, so that you can eventually go off hormone replacement. And the treatment methods are often high doses of iodine or working on lowering the antibody levels to reverse Hashimoto´s. Which I personally think often amounts to giving people false hope when they are desperate and looking for answers. So, a general comment was interpreted very personally and as an accusation.
Sadly for that person the problem was hers ....not yours P-C.
I've been "picked on" by someone I knew vaguely ( in real life!) because they didn't listen properly to something I said. They drew their conclusions on what they thought I had said...and made an enormous mountain out of a miniscule molehill.
It really upset me at the time because I knew she was wrong and was being backed up by her known- to - be trouble making, high flying husband ( well he thought he was!). I got tired of his threatening phone calls so in the end we referred him to our family solicitor, that was enough to shut him and his threats up. Just a bully. Absolute total madness!
I'd never encountered that behaviour before but I'm still here ...and they moved on to pastures new where I believe their attitude went with them!!
I know that's not a forum example but the principle remains....they got the wrong end of the stick!
In a nutshell...don't let this get under your skin!
I (personal opinion) think that was a low bar for that person getting that upset then. And you're right about credible appearing doctors confusing the issue by claiming you can 'cure' hashimotos. I have even had people strongly assert this to me. I think the evidence will eventually always bear out in the end either way. The issue is other people thinking it is so. Everyone is free to go down the medical route they want.
I've upset people before. Their own unwillingness to accept that there are different schools of thought to their own meant that they refuse to listen to alternative options.
There are some occasions when a block button would be helpful.
Maybe both people who left were actually the same person.
I actually haven’t read any post by you that I would classify as rude … so don’t lose sleep over this and people need to understand this is and online forum not everything someone saids should be taken as an attack on them … relax, breathe and process the comment before you respond with venom.
Hoping you feel a bit better now. These incidents are quite common across social media, and as others have advised, just put it to one side. If you do feel uncomfortable here, there are other thyroid forums, as well as thyroid groups on Facebook that you might find more congenial.
If only this were still a forum where all experiences and points of view are welcome... It certainly hasn't been over the past year or two, for me and for several other longstanding members. Sometimes, the only thing you can do is walk away.
I know exactly what you mean. I've never received any DMs, but have had someone shouting at me (typing a reply with some of it in block capitals) because I didn't jump to it and follow her advice exactly. I'd replied to her previous comment saying thank you, I'll try her second suggestion but saying I had already tried the first previously and it hadn't worked, but she wasn't happy I wasn't doing both and made it very clear. Fortunately I have never been upset by things like that, I usually just shake my head and carry on regardless.
I've also seen comments on other people's posts that made me take a sharp intake of breath at the rudeness of the comment. On a couple of those occasions other people had further replied to say how rude the comment was, so at least I know it wasn't just me who thought they were being rude
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
after any comment i think might be taken the wrong way by someone who isn't used to my way of writing .
Not at the patients demand!
Advice on what to eat and what not to eat. 
Results of Writing to Dr (Not Great!)
OT: What do you say when you can't say 'get well soon'?
