Thyroid UK
89,227 members103,734 posts

Deleting posts after getting replies (again)

A new member came onto the forum last night, quite late at around 11.20pm, and I responded as it was the usual story of endo reducing dose, trashed vitamins and minerals, etc.

45 minutes I spent responding to all her posts with all the usual valuable information to help members in this position. A very informative thread for any new members reading through. I even tagged SlowDragon so she could add her valuable information and links, which I imagined because of the time she would respond this morning.

I delayed going to bed to help this member, eventually logging off at just turned 10 past midnight.

She has deleted the thread, so all that information that could help someone else has disappeared, and all my time wasted. Totally p*ssed off about that.

Just saying...........

Just needed to get that off my chest.........

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Hi SeasideSusie

Can understand why you are upset about it totally.

Silly question perhaps but, why would they delete it??.

You have always given me fantastic advice, and as you say others can benefit from the posts, not just the person posting the question.

Best wishes

Peanut31

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Silly question perhaps but, why would they delete it??.

Honestly Peanut, I haven't got a clue. I really wish I knew why :(

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Ask her why, she's still a member.

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I have Bantam12.

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What did they say?

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Not replied as yet MissFG.

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Hi. I don’t post but read lots of topics on here and find the advice you have given to others invaluable so hope it makes you feel slightly better that lots of people benefit from your knowledge 😀

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I guess it’s possible she didn’t think through (or wasn’t aware of) the implications of deleting the thread.

Sad thing is, she might find it very difficult to come back now, and it sounds like she may need help.

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Valarian,

She could apologise to Susie and continue posting or she can delete her account and start a new one.

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She could indeed Clutter.

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You are so justified in everything you say. The other thing that p*** me off are the amount of people who are only interested in reading the helpful replies that are sent to them personally - but not prepared to read the links we post or using the Search Facilities. Just want to be spoon fed. So many cannot even say thank you ... Maybe it is the world I have not yet moved smoothly into - call me old fashioned - but hey ?? - doing my best.

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Thanks Marz I can understand the frustration but I am on about 4 of these forums and thyroid uk is the only one I ever get any thanks from or much response at all. I know we should do it all the time but I have sometimes felt overwhelmed by the number of responses especially if the posthas been active a few days and am not sure I have responded to everyone. At the moment my computer will not do links from email responses. Clutterresponded to my post the other day and I couldnt find my post later to respond or thank her. I think we need to ask this newbee why she deleted without sounding p***off. It may have been a computer error with her being new, or she may have thought she was supposed to or she might have stuff going onin herlife we are unaware of that led to this. It is annoying and it is lovely thatpeople work so hard on this forum to help each other but give her a break everyone.She is new. I was a certifiable nutcase when I first came on here and said and did alsorts of things people may have found difficault to understand and I am sure I p*** peole off and maybe still do but Iwont be frightened to come backif you all have a go at me now because Iam not new anymore.

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To be honest Mandyjane, having a thyroid problem, whether hypo or hyper, doesn’t exactly make for placid people ! I guess we all p*** people off from time to time, and I guess we should be understanding about it, but understanding can be in short supply too ;)

(Note - this was a response to your post, not SeasideSusie’s original, which is really about basic forum etiquette)

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Thanks Valarian. I remmber years ago whenI was very hypo and also very distressed about other stuff phoning victim support for some advice andinstead to being given some advice Iwas encouraged to talk kind of counselling style to thiswell meaning volunteer. I am mortified as I look back butI hada tantrum and I remmber saying, 'emotional vampires the lot of you' andslammed the phone down. defo not placid or grateful. Thanks for replying.

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What a shame - you all work so hard - invaluable info imo - support in a minefield of different opinions too -

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Your right to be a little upset ..

.....But please know that so many of us are so very grateful to your for your huge kindness in helping us so graciously and generously whenever we ask .. and very often when we don’t even have to ask .. you’re a one off Susie

Luv mx🌹

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Hi SeasideSusie

In case it makes you feel better, I know some people are very paranoid about what can be found out about them online or personal information or may have even used a username they use elsewhere and suddenly panic that friends or others that know them may be able to identify them. Some people just worry about their personal information being used (I have a few clients who still refuse to use internet banking or any other online site) and I have a friend in a particular profession who has to keep a certain ethical position inside and out of work who got a little worried about this and went back through her facebook to the beginning and deleted a lot and now doesn't put personal info/opinions on there.

It could just be this - so you may still have helped her in this case?

Or she could have completely disagreed with everything, and decided everyone here is fanatical as obviously Docs are gods lol.

Either way, I'm sure you helped as it will stick in her mind when she's no better in 10 yrs time :-D

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Interesting points. I'm one of those people who doesn't use internet banking too. :-)

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My nan gives me cash so I can order everything for her online using my bank account instead even though she has internet at home and quite capable lol :-)

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:-D I've been buying online almost as long as I've been online, about 20 years, but one of the first things I did when I got the internet was to read a book about online and computer security.

I've never signed up for online banking, mostly because of security concerns (also find branch visits useful). I've had my credit card intercepted during payment over supposedly secure connections with current certificates about four or five times, but with a c/c I have certain legal protections I don't have with my current account - the source of all my, ahem, 'wealth'.

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Lol - yes I'm similar with my "ahem" wealth lol. I'm happy with certain well known companies, otherwise I use paypal, sometimes call company to see if verifiable by asking questions about the so called specialist stuff they sell or just use my useless second account that has nothing in it and no overdraft and no ability to go over to take anything out. Don't use credit cards. I've had a couple of issues years ago before starting to be a bit more sensible but bank always refunded me back :-)

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Absolutely agree SS.I get irritated by folk who do not do a bit of research first before asking very basic questions like "What is T3" but then I Am a grumpy old man.

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I think I may be turning into a grumpy old woman (I certainly qualify for the old part after my latest birthday :D )

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I'm not turning... I've already turned!

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I agree with you. The very least people can do is thank the member(s) who've taken the trouble to reply, who then find it has been deleted.

After all, other members may also benefit from the information and even new members as you have stated and some people just come on to browse through questions/answers and may find one that answers the already asked questions.

If the person has second-thoughts about what she has posted, she can amend it to remove the part that she was now wary of.

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Yes totally agree

I would have replied in full (as usual)

Just been busy this morning

Everyone else definitely appreciates all your help

Sending you a big hug x

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Thanks SD. I didn't get chance to find out if you had replied, it sounds as though it may have been deleted before you got a chance to respond. I really must dig out one of your posts with all those links so that I can include it in my replies.

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Susie, that is unacceptable and so rude! I feel very crossed too. You always spend so much time giving valuable and practical information, spending so much time... Cannot understand why she has done that. You are quite entitled to feel the way you do.... So sorry some people don't seem to appreciate how much time it takes to give such detailed information, time and again. I am always grateful for any info you care to give and am sure so many other people feel exactly the same. x

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So sorry for you as you always spend a lot of time giving great, much needed advice. You are one of the mainstays of the site so feel sad you have been treated this way. Am sure I speak for many when I say you are much appreciated 😊

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Should she not have been able to face the music in respect to her health issues, perhaps all your deleted late evening efforts spared her dog getting kicked.🐕

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Have had a similar experience and member even vanished leaving me puzzled and disconcerted. Again it was late at night. Part of the point of the forum is so several people can offer insight and correct any misinformation too. If someone deletes they risk getting advice that is not screened by others.

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I agree very strongly with the responses being open for comments by others. I am sure I have made my share of mistakes - and sometimes been corrected. As I should be. If deleted, or done out of view in private messages, that does not, indeed cannot, happen.

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This has happened to me a few times in other forums. On the last occasion, I sent my lengthy reply as a message. Sometimes i’ve answered my own questions by the time i’ve written them, some people are piqued when they don’t get an instant reply. New people on the forum may not think to look for similar questions to their own, or not feel confident querying their doctor’s inadequate knowledge.

I think some people aren’t aware of the effort involved by the folks on here that help so many of us feel better. This is by far the best forum on HU, & we’d be lost without your help, & that of the other clever people & admins!

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I also think new members may assume we are all in paid employment.

It doesn't strike them that they get responses free from people who give their time willingly in order that they don't have the bad experiences many have had with either being undiagnosed/misdiagnosed/ or not on sufficient hormones but given antidepressants to keep them quiet or additional prescriptions for the symptom(s).

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Yes, Shaws, I've seen some posts where the OP has tried to 'bump' their post after 5 minutes with no reply! I've pointed out that no-one here is employed/paid to respond to questions and that we're all fellow patients sharing experiences.

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Hi Seaside Susie,

Sorry to hear that you took the time to help someone and it turned out to be fruitless.....

Please know there are many more of us out there who have learnt so much from your sound advice , me being just one person.

I’m a year into my thyroid journey and still learning and getting amazing advice from great people like yourself who are prepared to give up your time and advice for free, to aid total strangers to try to get well. You and Marz and others have given me such help over the year that I , for one, will be forever grateful.😊

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I can empathise and sympathise. I've had posts disappear quite often, and it drives me nuts. It's particularly annoying when I think to myself "Oh, that post I wrote yesterday could be useful for this member, I'll pass on the link".

Then I realise I can't find it, and I start wondering if my memory is at fault and I wrote it two days ago or three days ago, and I waste even more time trying to find it.

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Yes, that's a problem. The thread gets deleted, but so does our replies from our profile page. I often go to my profile to find previous replies I've done for the same question and do a copy and paste job rather than type it all out again. That way nothing gets forgotten and left out.

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SeasideSusie,

I have most of the stock advice and links I give saved in Word and I c&p into replies. Still takes time though. When I've become aware that a member has deleted posts with replies I no longer respond to their posts.

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Some of my posts have gone missing, though only on one forum...

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BadHare,

That's a site glitch which occurred on Friday, not last night. You should email support@healthunlocked.com to advise them which forum your posts are missing from.

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Thanks Clutter, it's a personal rather than a site issue.

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Seaside Susie, you can't win em all !!!!! Just keep doing what you do with the very best will in the world. Too many of us appreciate your valuable and constant assistance to waste negative energy over this incident.

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I know. It's happened before and I don't normally bother or say anything. What got me this time is that it was around midnight and I specifically stayed up to help in what seemed to be a pretty desperate situation, when really I would have been better off going to bed.

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SS, a few weeks ago a person on this forum just like yourself gave me hope of finding T3 in Saudi Arabia when every medical person I contacted told me it wasn't available. Through this person I now have managed to secure this medication in this country where I work. You never, ever know who and how you help people. This forum is a very powerful force and what any of us offer in good faith from experience, suffering, knowledge and endurance has to be an amazing thing. You are part of that. If now and then there appears to be a lack of appreciation then that's someones loss but surely optimism and determination are traits that have helped us all have a better quality of life and will sustain and inspire regardless. Keep up the great work you are doing!

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I couldn’t have got through the past few years without the advice I’ve read on here. I’ve bought vits and supplements based on your recommendations and have definitely improved my overall health. It’s all much appreciated. Thank you to you and to all those who take the time to contribute.

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You guys have been totally awesome in helping me move very close towards regaining great health again since diagnosis. You have given me back my life and, in doing so, my husband, my elderly mum and children have all benefitted in different ways from your advice to me.

Without SeasideSusie , SlowDragon , Clutter , humanbean and of course greygoose (to name but a few of the wonderful wise and generous contributors) , I would probably still be on 50mcg of levo and have dire vitamin levels, my husband would never have got a diagnosis as we wouldn’t have known how to convince his GP, and my mum would still be suffering from poor B12 symptoms without any of us having a clue what they meant.

I respect you all tremendously and am eternally grateful for this forum. With huge huge thanks.

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Thanks, Kipsy.

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It’s absolutely nothing compared to what you guys do Clutter . Huge respect!

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Thanks Kipsy 😀

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Thanks, Kipsy. :)

I have reduced my posting on the forum in the last few months. It's nice to know my older posts still get read though. :)

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I'm so sorry about this. Personally, this is the first forum I have ever used and, being completely new to all of this, I originally posted using my real name and then became worried that people who know me might see my posts. I'm clueless with computers so I couldn't find where to change my user name so, sadly, had to delete my earliest posts. After that I finally figured out how to change my user name. Maybe something similar happened with the member who interacted with you last night? Maybe, like me, she suddenly panicked about sharing such personal info on a public forum using her real name for all to see?

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I get what you're saying Venus and understand, but she is still a member with the user same name, just deleted her thread.

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Hopefully she will explain to you why she felt the need to delete her thread. I'm sure that all of your comments were hugely helpful to her X

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I can only sympathise with you! I understand how frustrated and underappreciated you must feel right now, and can only hope this member did not understand the consequences of her actions. Please don't give up helping others; your posts are great - full of useful and detailed information, with links to reliable sources, and help so many members, including me!

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How awful and what a shame. To be honest I tend not to reply to new people much or say much when I do because of this. If they come back in and respond then I will say more to them. It's really annoying trying so hard to help people then they either ignore it or even delete it. x

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Their loss is immense ...no wonder you are p' d off SeasideSusie

But for all the posts, links and reading etc advised here I would still be clueless whereas I now have a fair grasp of my thyroid issues and have gained the confidence to query my treatment.

Getting there.....

I hope she replies and has a reasonable explanation. I'm old (ish!)..and cranky when it comes to bad manners

The rest of us greatly appreciate the time and effort you devote to helping us.

Take care

DD

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I can understand your frustration Seaside susie but I am cross with a huge number of people who have responded and if I read these posts as a newbie I would not want to post here ever again. Everybody is comming across as bitchy and clicky and I love this forum and am very grateful to a huge many of you but this is grim and beneath you all. You can all come and have a go at me now instead of some newbie who doesnt know how things work.

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We're all entitled to our opinion Mandyjane but I don't think any of these posts are coming across as bitchy or clicky. Threads being deleted after members have spent a long time asking questions and answering them happen from time to time, sometimes we have a mini epidemic of quite a few being deleted in the space of a few days. Other members have posted about it before and this is the first time I've ever posted about it and what prompted me to was the fact that I spent at least 45 minutes from 11.20pm last night to help this poor, desperate sounding person out, delaying my own bedtime to do so. Maybe if it had happened to a post you spent such a long time responding to at such a late hour you might view it differently.

I have a new rule after this, no more posts from me after 11pm however desperate the poster sounds.

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Ithink this highlights an issue that need to be addressed and maybe when people go to delete posts there should be a notice that comes up suggesting or making them aware of the issues. It seems bitchy to me and I have been on the receiving end of similar on a face book group and it upsets me to see it here. It isone thingto haveago aboutbad treatment or poor doctors but having a go at each other is not on.People are ill and when they are ill they make mistakes and they do stupid stuff itisjust the territory.I imagine her delete was brain fog or maybe she was really desperate for something she didnt get, needing the samaratains or something and not us and deleted in frustration. Maybe it is my years of nursing but I havevery low expectations of sick people, they are usually horrible untill they get a bit better and you let them off rather thanhave a go at them. I wouldview it differently. I am retired so only do things I really want to do in thefirst place. If I respond toa postit is because I find it interesting and enjoy thefact thatImight be able to help. It is my hobbieand I find it fun. I am also wired differently from most people.I am just unusual. I can understand your frustration you are anormal human. I once spent an hour toward the end of a long shift,dressing a really stinky leg ulcer only to find it all pulled apart with dressings and bandages all over thefloor ten minutes later. I had todo itall again. It was crap and frustrating and horrible but not the mans fault he was confused.

I haveseen acoupleof things on this forum that have worried me recently. Awhile back instead of people just posting thier responses to a post some people started argueing and running down another persons response. This forum has always be a very kind safeplace and people were kindto mewhen I first came here and I am sure due the the state I was in I said some unhelpful and annoying stuff. I want to keep up the standard that was set in my mind at that time.

I amnot saying youwere wrong to express frustration but I don think being cross with the person who posted is the way forward.I think we need to think about a way to limit this happening again and maybe finding out why it is happening would be a start.

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Yes, this could be a cry for help. Should it be I encourage the party to reach out to Mandyjane , to another here, your family & or healthcare providers for support. Remember medicine is considered an art too & as such there are different styles. A cry for help will not go unheeded by reaching out when you feel ready.

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Maybe it’s just me not reading every posted written word, but I have never noticed anyone being bitchy on this forum. Plus, I don’t think you can compare what happens to you on FB (if you are daft enough to post publicly) to anything here, everyone seems so nice to me, even the worried ones. x

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maybe bitchy is too strong a word but I am concerned thatassumtions have been made about rudeness and lack ofconsideration about someone we do not know,who isnew here and I would imagine bemortified if they were aware of the amount of peoplecomplaining about thier behavior which may have been due to something assilly as pressing a wrong button when tired in the middle of the night. It is very rare I feel people are not kind on this forum. People do not realise howpowerful publicmedia is for instiling shame. I am not saying that SS complaint inst valid I just think blame is outof order when we do notknow the reasons. What is important is that we find a way to reduce this happening so that peoples hard work is not trashed. That is a constructive way forward rather than talking about rudeness and forum etiquite.

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mandyjane

I'm sorry you feel like this but it has been pointed out that the person concerned may have a reasonable explanation.

People like SeasideSusie who give up a great deal of time and make such a huge effort to help us all - often when we feel very low - are much appreciated by members. We rightly feel a sense of loyalty to those who volunteer to help turn lives around.

If panic or a sense of shame made this person redact their post then I hope they come back and read these comments and realise that rather than appearing "bitchy and clicky" this is a place where unidentified people can stick together and support one another in times of desperation and frustration....it sounds as if this may be what that person badly needs.

Best...

DD

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I agree with you that the responses reflect frustration with a situation that keeps happening. There could be all kinds of reasons for these post deletions that occur just after a thorough response has been given, but a thank you from the recipient is always appropriate, even when ill.

Sorry if I'm being dense or confused here, but I keep seeing the word "clicky"? Do people mean cliquey?

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Ah, I wondered what clicky meant too. Your explanation makes sense to me. Thanks Hillwoman :)

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You're welcome. :-)

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Dense you certainly are not Hillwoman!!

I agree that saying thank you is important - that was drummed into me as a small child!back in the Dark Ages - and I referred to manners in an earlier response in this thread

I assumed "clicky" meant cliquey. I quoted mandyjane's spelling rather than changing it and maybe adding insult to injury. I understand commenting on such things is not deemed acceptable here. Brain fog and poor memory have turned my own formerly good spelling into something less than predictable.

Perhaps we all need to take a deep breath here and move on....despite the fact that SS was badly snubbed for whatever reason.

Hope everyone had a better night than I did and, that they have their best day ahead. We have frost and sunshine and it looks like being a lovely day.

Best...

DDx

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Oh dear, so sorry, I didn't realise we weren't supposed to query spelling. I just had one of those moments when I really wasn't sure what someone was driving at, and thought I might have misunderstood.

My sympathies for another bad night... ditto here, I'm afraid.

Snow and overcast skies up here, and more of the white stuff forecast.

xx

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Totally understand... most days I spend my time in a fog

Take good care and hopefully sleep well tonight

DDx

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Ofcourse is is appropriate and should happen. As I posted earlier I was unable to thank clutter last week due tocomputer glitch. Iam dyspraxic and for myself learning computer skills is an ongoing uphill challange and when things happenlike the way to post changes itmight well be me deleting a post. I am not rude or ill mannered justnot as computer savy as most people and I tend because of my own problems andlife experiance to havenotsuch high expectations of people ticking boxes. My own experiance of myself being ill and as is common to others is thatwhen ill I am not atmy best anddontexpect others to be either. Yesof course it is appropriate to thank someone but there maybereasons that has not happened and as far as Iam aware everyone has been talking aboutall this rudeness and bad manners and no one has even asked the woman why. How about 'Hi I hope you are OK and that we didnt offend you butjustwondering why you deleted your post'.

Thank yous are great and should happenbutdoes not mean we should judge someones character because someone fails to give one for reasons we do not understand.Life is too complex to make judgements based on next to know info about someone.Wahtif she had for instance an abusive husbandwhocamedown in the nightgrabbed the computer off her anddeleted her post and she want to repost at a safer time and finds all this stuff about badmanners and rudenessand 40 odd people up in arms about it when she does.

Itis a valid point to say this is frustrating and a waste of time when people delete butdiscussing the manners of someone we have never met is wrong.

I cant spell either

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"no one has even asked the woman why."

Yes I have, yesterday morning, in a private message as she no longer has a thread to respond to, and I have not had a response. She is still a member so would have received email notification of my PM as well as an indication on the forum that she has a PM.

As I said in another response on here, I had a little moan as I was upset all my hard work and the time I spent had gone to waste, but I am over it now. Maybe I should delete this thread now, and we can all move on. I didn't expect so many responses and I am very grateful so many people have replied and can see my point of view, and I am humbled by how many people have said my replies to their questions are helpful, but it seems to be causing a bit of controversy and that's not what I intended.

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We know you didn't intend to be controversial, so please don't delete your post unless you really feel you must. I think it would serve as a useful guideline for people who are new to the forum.

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mandyjane I have not judged anyone's character here. I made an observation about a general trend in behaviour on the forum, and that is quite different. I also understand your points about illness affecting one's behaviour, and I'm sure everyone here can identify with that.

On the other hand, you have used in your own comments a gender-specific word, "bitchy", to describe a lot of the comments under this post - an epithet that is always used in a negative, prejudicial way.

I quite understand about difficulties in learning to use a computer and online forums. We all have to start somewhere, and it's easy to make mistakes while we're learning. No-one would criticise you for that.

My additional point about spelling was that sometimes mistakes can lead to misunderstandings, especially when we're brain-fogged - but that's when mistakes tend to happen anyway. My own spelling has really deteriorated in the time I've been ill, so I keep having to edit my remarks after I've posted them in order to make them clearer.

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Was the question about "chest pain and breathless"? I saw that and wanted to read it, because I too have that from time to time. Howevet, when i clicked on the post, it said post has been deleted. 😔

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The thread title was "Dose Reduction", there were so many posts/questions within the thread I'm afraid I can't remember whether chest pain and breathlessness was mentioned.

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Oh ok. Yes it is frustrating!

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If you delete anything sent to your home e-mail after reading it does that delete the posts too? I write things down but don't indefinitely leave everything in my e-mail. Sorry but I know very little about this sort of site.

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Clarrisa,

Deleting email notifications from your home inbox doesn't delete posts from the forum.

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Your advice is & has been invaluable, a big thank you and lots of love 😘

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I guess it’s possible she didn’t think through (or wasn’t aware of) the implications

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At the end of the day yes it is annoying and you would feel totally peethed by it but SS you do a 1st class job like many others here, move on and carry on giving your excellent knowledge, 👍👏

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I am wondering if before people delete thier posts a little note couldcome up asking themto keep it up if possible for the benefit of others or let admin [with a link to one of the admin team] know the reason.

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Hi Mandyjane

Perhaps you would be kind enough to pass this suggestion on to HealthUnlocked. :)

support@healthunlocked.com

Perhaps they will also think it would be a good idea! :)

L

x

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Thank you. Will do.

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It’s a good idea, a similar note pops up on eBay if anyone is thinking of posting a negative response to their purchase.

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Thank you

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Wow Seaside Susie, wish I had a fan club like yours !!!!!

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It's a bit embarrassing! I think it's support for the principle really.

And I think that if this thread had been started by any of the many other wonderful members who contribute regularly and have much more knowledge than I have then the support would have been at least the same, if not more.

I'm nothing special, just someone who has had Hypothyroidism for over 40 years and the last 20 of those being ill and looking for answers that don't come from anyone in the medical profession that I have come across. If I can pass on something that I have learned along the way and it helps someone else, then I feel I might have done something a bit useful, but I'm not looking for a pat on the back for doing it.

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As you know the posters name, maybe send them a link to this thread and then they might understand how upset a person can be by a simple but thoughtless action on their part.

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I sent a PM with a link yesterday Ellie-Louise, asking why she had deleted her thread, no response as yet. It was upsetting at the time but I'm over it now :)

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Oh, I thought you had just asked her why. I didn’t realise you meant a link to this. I’m sorry you’ve been upset by a thoughtless act by someone. You are such a kind person. xx

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SS, Everyone is special! Sometimes I wish I could throw a big party and invite all the helpful lovelies on this forum. Not sure what I would feed everyone. Gluten free for starters.

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It’s unfortunate that this has happened and I can understand your frustration. However I can also understand maybe why this happens. Generally I’ve found by reading threads and from a personal perspective since joining that some responses can be very forthright and direct and could make someone call into question their relationship with their primary healthcare provider. I’m in no way saying that you did , but the number of threads I see calling into question the integrity and knowledge of GP’s and Endocrinologists and using derogatory descriptors does concern me as does the trend for self medicating all of which is in direct contrast to the forums disclaimer in faint writing at the bottom of each thread

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Hidden

So many of the people who come here are left undiagnosed and untreated, sometimes for many years. There are others who are under-medicated, or wrongly medicated, or denied T3 despite being unable to make enough of their own. There are people whose nutrient levels are in their boots and the response from the doctor is "No further action".

Patients are shouted at, and diagnosed with various mental illnesses after a 5 minute appointment with a doctor who has no psychiatric training.

Why should we be polite about doctors and endocrinologists when they make our lives a misery?

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I'll second that!

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Snow2000

"the number of threads I see calling into question the integrity and knowledge of GP’s and Endocrinologists and using derogatory descriptors does concern me as does the trend for self medicating"

The problem is that the great majority of people who come to the forum are here because they are at the end of the road and desperate, they have been let down by these very doctors who have little to no knowledge of Hypothyroidism and Hashimoto's and the role that vitamins and minerals play. There is so little time spent in medical school on thyroid disease (I have seen it said it is one afternoon) that one can understand the lack of knowledge but that doesn't excuse doctors accusing patients of lying, being non compliant with their thyroid meds, diagnosing mental health problems when they can't be bothered to fully investigate, and not even being able to understand how to interpret test results. We have seen many instances where thyroid antibodies are in the hundreds with a range of <34 yet the doctor says they are negative!

How can a doctor say that a ferritin level of 3 with a range of 15-150 is fine? Or that a B12 level of 120 in a range starting at 140 is of no consequence because it's only a little bit below range? We see that day in, day out. Is it acceptable? Is it the sign of a good doctor?

I hold my hands up to making derogatory remarks about these doctors. I had one such endo 20 years ago who shouted at me. He didn't like my suppressed TSH so he did what they all do, reduced my Levo more and more to get my TSH back into range. The result of this was to make my FT4 and FT3 plummet to the bottom of their ranges and it turned me into a zombie who couldn't do anything and I had to be looked after for 2 years by my husband who also had to take on my role in our restaurant business. Fortunately the GP I had at the time had more sense that the endo (who was a diabetes specialist, as most are and so they don't know much about thyroid disorders), and she allowed me to increase my dose again, but the damage was done and 20 years later I still have problems and don't believe they will ever be sorted because all my current GP can say is that my TSH is suppressed!

So I can fully understand what members are going through and how they aren't getting the help they need. Do they stay ill for the rest of their lives, ending up bedridden with wrecked families? Do they commit suicide because they can no longer cope with living in such a state (yes, it has happened). So what is the alternative? Try self medication with guidance from experienced members. As a last resort then I will encourage that with proper guidance.

As everyone is an individual and we all have different personalities, then some people will come across as very direct, others not so, but the message is still the same. At the end of the day most of the posts here are from desperate people asking for help because they can't get it from the people who are within the profession we turn to when we are unwell.

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Well said!

We would all like to live in a perfect world....but the reality is, we do not.

Please keep up your good work SS

Best...

DD

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This forum has been a wonderful resource in many ways, but one of them is the realization that guideline-bound and incompetent doctors and endos are the norm! Some may not like the suggestion, but you can't change the reality.

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Oh, and as a PS, my new open-minded GP (see there are some) chuckled when I told him I got some T3 in Mexico. He basically gave the a thumbs-up. Even doctors recognize that most doctors/endos are numbys.

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What disturbs me is the fact that medics are not taught adequately about thyroid function. If that situation were to be reversed then there would be no need for this forum. The personal experiences of members are proof enough of the forum's value

The help and advice offered by the well informed here is pulling people out of the depths and ofering them hope and a better life....when before, they knew despair If you have been reduced to wondering whether or not you are going mad, then you will surely empathise.

As for self medicating, I started out as a nay sayer but my experience with various medics only underlined the fact that I was wrong! We have been forced into a situation where we have to take control.and the best place to do that is among people who know what they are talking about.....from experience.

Thank you everyone...you know who you are!

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I do understand your concern as there will be some good doctors around but myself personally and from what I see from others here, this is normally only ever done in situations when there is clear cut negligence and serious consequences from the poster not getting treatment asap like with rock bottom b12 etc or with very silly moves like stopping their prescription or going from 150mcg to 25mcg. These situations are dangerous and could put someone's life or their unborn child's life or ability to live normally in the future at risk. What other way would you suggest we make it clear as day that they must go to another doctor the very next day to prevent this - they will not understand if just say, okay this doctor is okay but please see another tomorrow. There is no choice but to tell them that there doctor is wrong. Admittedly it could be said in a nicer way but most have us have been left crawling in bed for so many years horrifically ill because of the same silly docs and it's hard to not feel a tad resentful at people who are getting paid a hell of a lot to know better?

Often these posters, who have dire results or silly decisions thrown at them, have been told it's in their head for years, have lost all will or hope, told results are normal and likely been in a bad state for a while and been through a long battle with their doctors and questioning their sanity or blaming themselves - and in my opinion these people often need to hear that's it's not in their head and get the confidence to march right back and get the treatment they urgently require.

I've never denigrated any doc or called them names over minor things like minor dose changes, being okayish in nutrients but not optimal, or even those docs that haven't had a chance to deal with it yet and I've never seen many here do anything otherwise - maybe have a moan once in a while about less than optimal treatment or knowledge - but only because it has an affect on all of our ability to enjoy life - I'm not sure anything else could be expected.

There does seem to be a spate of horrific negligence more recently, but the fault lies with the doctor.

Having said that, I can see the possibility that this could make one or two new posters feel that we must be talking rubbish or are raving lunatics as doc would never do that and encourage them to leave, I just think more need it the other way round maybe?

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Some of the treatment by docs described in forum is nothing short of abuse. Like you said, they get paid an awful lot to know better. Especially when you confront them with knowledge and they try to make it sound like you are the problem, hiding behind that white coat. White coat syndrome type II. The groundswell of anger is what you see here when someone is being treated abusively. Is it any wonder?

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Yes they really don't like it when you try and push a medical paper in front of them or try to discuss, they normally mumble some rubbish and get visibly irritable. These are signs of lack of knowledge though, anyone who was an expert and competent would normally happily discuss why you are wrong or the subject at hand wouldn't they lol?

My GP is not that knowledgeable, I stick with him because he admits it when he doesn't know and admits when I know better than him - I like him because of this. I don't expect them to know everything, I expect them to admit when they don't and look it up and I expect them to be knowledgeable enough to know when somethings not right and again think to look it up - like starred results or those under range lol. I also expect them to be able to read - such as lab comments. I also expect them to accumulate more knowledge with each year they practice. It's the docs not doing these things whom are dangerous, as this is what causes the dangerous situations. I don't feel I'm asking for too much from them to be honest lol :-)

This is the expectation in many other professional occupations - accountants/lawyers/surveyors/engineers/etc and no one else would get away with this level of negligence, they would lose their chartered status or whatever their credentials from whatever body they have or get sued. Don't see why docs are considered above everyone else?

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Yup, the ability to read is very good in a doc.

My endo welcomes research papers.

She doesn't know everything, but she's open to reading.

Wow, huh? No, not asking too much....

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I can totally understand why you are upset SeasideSusie, but your help and advice is so appreciated by all on the forum.

You take so much time to help others, we are all so grateful.

Best wishes lucylocks.

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I think the offical line was at one time that thyroid Uk can does not endorse or encourage selfmedication but understands why people may chose to do so. I hope I have got that right so advise will be given on how to self medicate as safely as possible but not encouraged.However Iam not admin or employee of thyroid uk and speak as a fellow thyroid

sufferer share my own experiance about what has helped me. I would die very quickly without my thyroid hormones that I selfmedicate and am almost housebound following becomming very ill having taken an endos advice to stopmy self treatment. I do encourage people toself medicated at times but thatis notprofessional advice or the advice of this forum it is justmyself and several others on here who have found that we have needed too. I think for hormone replacement it is safer to self medicate than rely on a doctors opinion, due to the complexity andflexibility needed to find the right medication and dose.

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We don’t live in a perfect world.

My personal experience has been excellent so far both with GP’s and Endocrinologist

I work collaboratively with them and try not to lock horns. All I’m saying is advice should be given with objectivity. Personal comments about GP’s Endocrinologists new members have no place on a forum that is set up to help and support those that are seeking guidance. Everyone is an individual and we all respond differently to changes in our bodies processes. Guidance objectivity and a degree of caution should be the mainstay behind any advice given. Sticking to the facts and not to making personal comments about those that are not given the right to reply

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That is great that you have have excellent experiences with GP's and Endocrinologists.

So now you have commented to that effect. Others comment to the effect that they have not had excellent experiences. That is what this forum is about. Patient experience.

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Yes and they have a right to say they’ve had a negative experience but responses should be helpful supportive and objective in order to guide them and should not feed the negative experience they’ve had. After all they may still have to be seen by that Endo or GP in the future.

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Here is something for you to ponder. A few weeks ago a person posted that her doctor was having her go completely without Levo after having had RAI 20 years prior. He wanted her to go 8 weeks w/o Levo so that he could get a 'baseline'. As it turns out it would have been a flat-line. After 4 weeks she was nearing a coma and ppl here advised her to see medical attention immediately. So you would be concerned that we painted her doc in a bad light because we told her that he was possibly killing her? But if you're okay with us piping up in that situation, where would you draw the line?

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I think there has been more than one such awful case recently. It's really distressing.

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The advice to seek medical attention was correct ... to inject even more fear in her by telling her that her doctor was killing her .., how did that help ?

On the one hand she’s being told to seek medical help and at the same time she’s getting the message don’t trust Doctors !

Doctors are human.. they do make bad decisions sometimes just like we all do and it shouldn’t happen. The only advice needed to be given to a person feeling that ill and scared was to see immediate medical attention. Nothing more needed to be added. Any concerns regarding that particular doctor could then be addressed by the person affected once their immediate needs had been taken care off

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When you are about to die, fear is most appropriate. That everyone should have danced around the bad practice (malpractice) of having someone who potentially had zero thyroid function go w/o thyroid hormone for 8 weeks without any monitoring is ridiculous. Sorry, I'm not dancing around it.

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Yes, I agree, I think the majority need to know the consequences so that they do take immediate action and don't sit on it wondering what to do - otherwise they may just listen to their doc - it is normally spoken in regards to that specific doc

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Exactly, it is not doctor bashing per se. It is doctor-behavior bashing.

I have a great new GP, an okay endo, and a GP I just fired due to arrogant and ignorant behavior. Every doc is different, but unfortunately there are a lot of negligent ones out there.

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Yes, I remember that one - she ended up in emergency hospital having thyroid meds through a drip - even the docs at the hospital advised her to see a different doctor after that as were shocked at what her doctor had done- what needs to be remembered is that those without thyroid or no function left, like myself - will die within a short time of organ failure without their meds and will take months and months to recover if not years. Those with rock bottom b12 will have irreversible neurological damage and those who are pregnant will lose their child or have children with brain damage if not seen to immediately.

This advice to see another doc next day is never normally given for any silly reason

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Yes, and she is now suing for malpractice. Yup, just listen to your doctor no matter what crazy advice they shell out. We are paying them to advise us. We don't have to accept that.

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Snow2000,

If anything I say encourages a member NOT to see an abusive or negligent endo or GP and to change endo or GP I will be very pleased.

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Amen to that!

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No, we don't live in a perfect world but I think we have the right to expect the doctors who are seeing us to know something about the condition they are treating, and at least treat the patient with the same amount of respect they expect to receive themselves. I am sure that if we had a 'pay as you go' health service and could shop around for doctors then we would experience something different from what some of us receive on the NHS. They would be selling themselves and would have to provide a good service to prevent us going and spending our money elsewhere.

You are a very lucky patient to have a good GP and endocrinologist, it is very rare to hear that on this forum. You obviously haven't been accused of lying about how you take your Levo, shouted at or been told that your symptoms can't possibly be thyroid related so you must have a mental illness. I sincerely hope you never do but if it happens you will know where to come for support and I can assure you that you will receive it by the bucket load. I only have experience of being shouted at, not pleasant and extremely disrespectful of the endo who did it, I would shout back now and tell him not to be so rude but I am older and more confident in those situations now.

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If I did have a negative experience and I have had in the past about another health condition , then I would deal with it as I have done before using the systems and processes that are in place. such as PALs etc after first discussing it with that person first.

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Surely you are aware of the widely reported problems with the NHS complaints system?

You sound more than a little self-righteous.

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Off course I’m aware of what is reported in the media and the reality, but that’s not a reason to stop using the system that’s in place or addressing concerns directly. I’m not self righteous and I’m sorry if I’ve come across that way. What I am is a realist, I try to be objective and I try to help. I’ve had negative experiences just like others have I’ve never said I haven’t but the point keeps getting overlooked. What I keep reiterating is that people need support and guidance when they have a negative experience. That doesn’t mean telling them that their GP is crap for example

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Snow2000,

Why not? If their GP is crap they should be encouraged to see a different GP.

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Support and guidance often involves helping them to see they can get better care elsewhere. And helping them work up the nerve and strength to do it.

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Hidden lol

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@Snow2000

It would be wonderful to be in your position but some of us are just totally exhausted, in pain, sick, frustrated and getting nowhere fast. Consider then, that in those circumstances any negativity may be an understandable if not wholly appropriate response and that such remarks are directed (by anonymous persons) at a situation rather than at a named person.

Can these be construed as personal remarks? I think not.

Who has suffered? No one discernible.

And ...the writer feels better for having cast something off their chest...which alone is healthy!

I might suggest that given the circumstances posts in general are commendably restrained, polite and considerate.

As you rightly say, "we don't live in a perfect world" and expecting people with their backs against the wall to be perfect every second of the day is perhaps a shade unrealistic.

Wishing you continued good health and care

Best...

DD

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I’m sick fatigued beyond words have chronic pain as well as an assortment of other symptoms. That’s me on a daily basis but those symptoms are not all attributable to my autoimmune Thyroiditis and Hypothyroidism. That has just added to what was already there due to another chronic health condition. I get angry and frustrated. I get tired of being tired and not the person I was five years ago before my health problems started so I fully appreciate understand and empathise with those that want to vent, but in offering support in a reply I’m not going to feed that negativity by saying for example all endo’s and GP’s don’t know what they are talking about because that’s not always the case. Instead I’ll remain objective try and give guidance and information to take back with them. That’s the point I’m making. When I joined this forum it was for support and to share my journey with like minded people not to read derogatory comments about the NHS Doctors Endo’s GP’s etc. If you had a pay as you go system not everyone could afford it and you’d be seen by the same people. It takes 10 years to ‘grow ‘ an experienced GP or consultant with a speciality. Just be careful what you wish for

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I'm sorry Hidden that you feel so unwell and like the rest of us, clearly drained.

Please do not assume that all medics are viewed here in a negative light....the point I made was that the problem is not a personal one involving individual GPSs, et al, but with a system that is increasingly failing thyroid patients. However, it has to be acknowledged that not all practitioners are equal to all the tasks they face.

I have the greatest appreciation for the NHS and it's staff who I have seen, first hand, achieve miraculous things.... but I see no point in expanding on that here.

I'm not sure to what your warning, "Be careful what you wish for" actually refers but be assured that the time and dedication medics give to their studies is fully understood and the work they go on to do, effectively, is greatly valued

I'm not sure that I would presume to advise anyone on medical matters but I hope I might be able to offer a modicum of support to those also on this journey of recovery....and I most definitely appreciate the advice and support given freely and without judgement to me.

Wishing you well

DD

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That's a most constructive and well balanced reply. Thank you

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I just mentioned further up, I really don't expect my gp to know everything. I like mine because he often admits he doesn't know how to interpret a specific result as no experience in that area or that I'm better making a decision on what to do with my meds as I know better than him - I love him for this. This is good, any doc who admits they don't know and looks it up is good. It's those that are making decisions that are bad who don't know and don't admit it are the ones causing the problems. Why would you not expect this from someone in a position that can make decisions that can kill a person?? I've heard some very sad stories on here where this appears to have happened. I don't understand why you wouldn't expect this as a minimum?

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Hi Susie how rude of them ! You have been such a help to me on here and I treasure your advice like gold dust and following as much of it as I can don’t let one lousy person get to you the rest of us think you are great 😘

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Please don't this get your down. Your input and advice is invaluable on here. So many people appreciate it. Hang on to that. xx

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Thank you :)

I have since find out that there have been a large amount of new posters lately coming on with tales very similar to the post I was responding to that night, turns out they were time wasters with nothing better to do, they post these stories but don't comeback with a response. I am treating these types of posts with more caution now :)

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I remember replying to you once SeasideSusie that if I was beside you, I would give you a big hug in Thanks for your help at that particular time in my life.

You are such an invaluable member of this wonderful group. 👏

Hugs again, (((🌹)))

J, ☘️

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It is very unusual for forum software to permit whole threads to be deleted by the OP once a reply has been posted.

The implication is that you don’t have any control or ownership of the posts that you reply to on HU. Perhaps this is in the terms and conditions?

I can totally appreciate that this situation is not satisfactory but directing it people who feel ill and anxious and who may not have a good grasp of the tech, is misplaced.

This is a software issue and complaints should be directed to HU.

Unless mods/admin have a better suggestion try support or feedback. (Bottom of the page) support.healthunlocked.com/...

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New members deleting threads after people have taken the time and trouble to give information and links to help them is not new, it happens from time to time and just sometimes, when there is a spate of them, those who have given their time to help feel a bit miffed.

Another member who recently gave an incredibly detailed reply to a member, with very valuable information that many members could benefit from, was in the same situation, the thread was deleted by the OP. She contacted Support to see if her reply could be retrieved because of the amount of valuable information in it and she could have posted it herself in a thread for members' benefit. She was told it's not possible to retrieve deleted threads.

I had a moan, I said in a reply further up that it was upsetting at the time but I am over it now. I have forgotten it but I am now more wary and careful if and when replying to those types of posts from new members, and I have a time limit when I log off so I no longer delay my bedtime for time wasters.

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The only other way around this issue is to post replies in a new thread. That way you don’t cede your rights to the OP.

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Posting replies in a new thread would mean no continuity and it would be very confusing.

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Yep. Long winded and confusing. You could leave a link to new thread.

However, at the present time it is the only way to retain control of your own posts.

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Possibly don't stay up and deplete yourself next time. Then it won't bother you.

I sound harsh (?) but it's a simple solution.

You can't put pressure and rules on new people who may or may not delete their post. But you can manage your own outputs and expectations.

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I have already suggested that, at the very least, the technology of HU should allow us to retain our own contributions even if threads are deleted.

For example, we could see them in our own profiles, even if otherwise deleted.

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When people reach out and sound desperate, some of us like to offer help and support, it's just in our nature. A bit like trying to rescue someone who is drowning rather than walk away and leave them to die.

Not sure why you've resurrected this thread after so long, if you've read through it all you'll know I said I now have a cut off time and am more cautious of similar posts when it's a newbie's first post.

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I didn't realise it was an old thread. Tbh I didn't look at date. Good to know self care is a priority. I've been the same myself at always helping, so I resonated. My solution was to have boundaries just like the ones you have put in place. Sorry for not looking at date. The site put it at top of a feed for me.

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This may not be the place / thread / time to post this, and it is not directed at anyone in particular. It is just a simple plea from someone who likes simple answers to simple questions. If I ask a question, can fellow members just answer it, without recourse to an airing of facts and information which are sometimes not wholly relevant to the question. On occasions, members just re-hash research in their own words without referring to the source - and they lose sight of the actual question.

This means that the diversity of information is enormous and just depends on who originally wrote it.

I can - and do - research myself, quite extensively. That said,I am truly grateful for the info, support and sharing of experience that happens on this site. It is the best in HU and the admin work incredibly hard to make it so. Thank you all.

But if I ask 'Does a dog have a tail?' can folks just answer Yes or No. Please don't tell me how many legs a dog has; how long the tail is on various breeds of dog.

If I ask 'Can you tell me about dogs?' then feel free to tell me what you like, including what the Queen's corgis like for breakfast.

Like so many people on this and other Health Forums, I am sick and I am tired. I can see no end to the complexity of my health problems. However, i will always be eternally grateful to the members who try so hard to help others and almost always succeed.

Maureen x

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You may not want that little bit of extra information, but don't forget that you are not the only one reading that reply.

There are many members who read but don't post for one reason or another, and they learn an awful lot from a little bit more explanation in replies. You may have asked a question that one of these "silent" members has wondered about, and that little bit extra information may help them to understand better.

So if you ask "How many legs does a dog have", rather than just answer "4", I would probably say "It has four, one in each corner which stops it falling over".

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Touche Susie. I was obviously barking up the wrong tree. A perfect end to a perfect tail :)

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The Queen no longer has any corgis, apparently.

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Thank you Rod. it seems that her last remaining corgi - Vulcana - is still alive and enjoying her breakfast. However, in 2015 she made the decision to stop breeding them as she didn't want any to survive after her death. (ref: Wiki, Source of all facts, opinios and fallacies).

(I guess there's enough controversy about Succession to The Throne :) )

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That's what l read too. Her last remaining pure Corgi, Willow, was PTS very recently as she had cancer. She apparently still has two dachshund/corgi crosses Vulcan and Candy.

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Trust that between them they have 8 legs :) They need all the support they can get at their age.

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Just noticed this SS and Grincho ...what a brilliant response...and as a bonus it made me smile on a grim day....thank you!

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Very frustrating Seaside Susie. And a very good point very well made. It is extremely useful seeing the replies to other people’s posts.

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That is a shame I joined today and that information would be so helpful. They probably didn’t stop to think - I have never posted on any kind of forum before today so actually it’s helpful to know and understand this and maybe other new members will also see this and think twice. The help and advice from this forum is invaluable and is totally appreciated.

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