Spammers, Scammers, Trolls and other Unwelcome Visitors

[RedApple]

As the nights draw in, the weather deteriorates, the cost of living continues to soar, and the NHS still considers liothyronine to be unnecessary, our amazing forum is likely to once again be more frequently targeted by 'Unwelcome Visitors'.

Over the years, the admin team have become really good at detecting and dealing with them pretty fast.

Add to that the fact that the techies behind the scenes of the HealthUnlocked platform have improved their algorithms to the extent that many obvious spammers and scammers are detected and booted off at source.

So if the majority of you haven't even noticed this happening, it's really not surprising!

That said, your small but dedicated admin team always need your help. We can't be on forum 24/7 monitoring every post and comment.

So, this is a reminder about using the Report Button. Please!

Don't be afraid to Report something that you're unhappy about, or even just a little bit suspicious about.

Admin will look into it as soon as they can. And if you turn out to be wrong, it really doesn't matter. No harm done, and better safe than sorry.

We don't always have time to thank people who take the time to do reports, or to let them know whether, or how the matter has been dealt with.

But we are always grateful for your vigilance and support.

[Fruitandnutcase]

Just curious - when we press the report button does it now go through to the TUK admin team (who tend to act very quickly) as well as to the HU techies or does it still only go to HU?

[RedApple in reply to Fruitandnutcase]

Reports on forum posts / comments go to the Admin team and HU.

Reports on private messages only go to HU.

[Fruitandnutcase in reply to RedApple]

Thank you for that. It’s good that reports on the forum go to our admin team as well as HU.

Do you think that applies to all groups or only just TUK?

[RedApple in reply to Fruitandnutcase]

I believe it's platform wide . HU tend to only actually act on blatant spamming though, and not always immediately. Forum Admins deal with the vast majority of reports.

[Fruitandnutcase]

Just wondered TUK have very special administrators who are ‘on the ball’ and act quickly when it comes to unwelcome visitors. Thank you all.

[Roulette26]

thank you team. Regarding liothyronine, thanks to you and the members I’ve fought the good fight, read articles and had umpteen private blood tests so that I could be armed for my appointments. Nearly 3 years on I’ve been prescribed lio , now it’s just a case of convincing the Endo my TSH doesn’t need to be above 2, that’s going to be harder!

Wishing you all good health and a peaceful new year x

[Charlie-Farley in reply to Roulette26]

Roulette26

I urge you to look at new posts from diogenes 😉👍

Frankly if your endo is resistant to ‘new’ knowledge, peer reviewed, now appearing in scientific papers, he/she is not fit for purpose- submit hard copy with cover letter.

It becomes part of your records and then they should directly refute it if they won’t play ball. Do not let them avoid discussing it. Not quite so easy to do when very good research is appearing in medical/scientific literature.

It can give you leverage. With so much uncertainty surrounding TSH, perhaps actual thyroid hormones and shock horror symptoms (!) should drive treatment. On first principles, using an INDIRECT measurement has always baffled me, especially when it so frequently does not provide an even adequate outcome.

Those who actually realise it isn’t right are the tip of the iceberg. Hubby and I run a hospitality business and we have had loads of people through who have hypothyroidism (poorly managed) and think that this is their normal. When we get talking about our shared affliction, I enquire as to the medication they take invariably they are seriously under medicated.

Might want to also point out that there is quite a lot of work coming from cardiology with regard to under medication of hypothyroidism.

Diogenes has been posting frantically for the last few weeks with so many good papers and so much good research coming out and some bad as well but he points that out as an example.

Good luck 😉

[arTistapple in reply to Charlie-Farley]

Do you mean work recognised as hypothyroidism being highlighted by cardiology because of cardiac incidents?Just asking because a long time ago, even although it was clearly protocol to test thyroid situation (a good thing) when cardiac symptoms arise, it’s clear some cardiologists did not know what to do with the information, or perhaps be able to read the test results. Are the cardiologists now better educated do you think? Or are they getting cheesed off getting so many patients through who are unfortunately undiagnosed hypothyroids and advancing into cardio issues?

[Charlie-Farley in reply to arTistapple]

Hi arTistapple 🤗

I took it to mean the latter 😱. I think the arbitrary thresholds GPs and Endos have been working to have been delaying treatment when an earlier intervention may have helped. We have a dear friend who was told years ago he was hypothyroid- now I don’t know if they considered it borderline. Anyway they never did anything about it. He didn’t question, why would he? We trust don’t we? He had a heart attack and has heart failure and now has a pacemaker fitted. Now he is on Levothyroxine 🙄. Would an earlier intervention have helped?

Know another lady who was told she had an under active thyroid, but she said she didn’t want to be on more pills - they didn’t explain to her it’s importance or push her to go on thyroxine. For years she didn’t take anything for her under active thyroid- but they managed to persuade her to go on statins! Having an under active thyroid often elevates cholesterol and this is addressed in NHS guidelines. Also statins causing tissue damage in people with hypothyroidism mentioned in guidelines.

You really do have to be your own thyroid advocate. All these research articles diogenes very kindly shares with us will take years to trickle down into practice. I see it as an absolute necessity to raise them directly with any doctors I may have to deal with in the future. Hard copy a week before appointment with summary if need be and how it relates to my expectations re treatment. Reception uploads to patient access and it frames the next appointment.

It’s worked thus far😉🤞

[arTistapple in reply to Charlie-Farley]

These two stories you tell are unfortunately my personal experience. Most likely at least subclinical for years. I have a TSH and FT4 measurement from 2001. I was never informed; most likely because they had no idea what they had in their hands. I was told I would not have a heart attack about six weeks before it happened. Still trying to come to terms with that and attempting to get well now. I knew I would not be alone in MY health being so mismanaged. ‘They’ or someone, knew the effects of hypothyroidism on the heart twenty years ago, hence the protocol of checking and yet nothing was done AND it’s still happening!

[Charlie-Farley in reply to arTistapple]

It’s heartbreaking

The culture of rigidly treating the lab work and not patients is damaging in all fields. Unbelievable, were it not for so much evidence actual and anecdotal.

I have been so lucky to be forewarned by the person who actually diagnosed me. A guest! Bless her. I thought it an exaggeration at first. But her words rang in my ears when things started to go array. I couldn’t ignore what was happening and blessed having a hubby who supported my request for dose increase early on until I was on form enough to fight it out for myself and blessed to have found this forum who gave me the ‘ammo’ to fight for my dose increases.

It could have all been so different. I can’t imagine I would have been diagnosed even now if it had not been recognised by the guest. GP was veering towards depression/anxiety and gave that diagnosis the appointment before we got my results back that showed I was hypo. Left to her tender care I’d have been left doped up on a chair unable to work.

I owe a debt of gratitude to this forum so hang about hoping to encourage and support others.

[arTistapple in reply to Charlie-Farley]

It’s very important you do hang about for the very reason you outline. I dream about what I could do if I was better and the huge amount of ‘catching up’ to do. I hope the day comes where I hang about too, able to properly acknowledge all the help found here from the ‘well’ side of life! Thanks for all your posts.

[humanbean in reply to Charlie-Farley]

I was first told my thyroid was "borderline underactive" in 1990/1991, and it required no treatment. Since I knew nothing about the thyroid at the time I assumed it wasn't important. I got my first prescription for Levo in 2013 by which time I was a wreck. My GP was very reluctant to give me that prescription!

Although I haven't had this confirmed I think I have central hypothyroidism, and possibly Ord's Thyroiditis.

[Charlie-Farley in reply to humanbean]

So many people being let down and gas lighted when they (GPs) know knack all! If they get get it right, it’s by luck more than judgement and the estimations of people being adequately treated on ANY thyroid treatment, be it mono or combination therapy is wildly over estimated. So many people think that the half life they get prescribed is all that can be done. 😞

[Hidden in reply to Charlie-Farley]

A friends husband has been recently diagnosed and I worry this is what is waiting for him... them.

He's not the type to question or push back on the doctors so I just hope and pray he's one of the few who do brilliantly on levo.

[Charlie-Farley in reply to Hidden]

Hi Witching hour

Flag the new research coming out of cardiology and that it takes years to trickle down. Under medication is understood to have equal if not greater risks than over medication. People seem to have more understanding of risk with regards to health if they are thinking about the knock on effects to heart health.

NHS guideline dose? Every single person who I’ve talked to who complained about feeling tired and other classic hypo symptoms was under medicated, both in terms of symptoms and guideline dose. The guide is only a guide though, ut it was spot on for me. It requires fine tuning when you are getting close. One poor lady, bigger than me (I’m on 150ug levo) she was on 100ug. 😱 Totally symptomatic and the thinking this is as good as it gets. Horrific!

[arTistapple in reply to humanbean]

Oh human bean, I know I am not alone in this. It means so much to me. It’s good to know there are strong women in the same circumstances and still retaining their sense of humour etc. This morning I have just been trying to put my health history in perspective for my private endo appointment at the beginning of next month. Keeping it on theme, trying not to stray too far in my explanations. Research, patience and support, all valued from this forum here has got me to this point. I do worry I am going to be let down again but the spirit of being able to pick yourself up and try again is strong here. As for considering central hypothyroidism etc. Daaah! Can’t get head around that. Just catching on to Hashimotos still! Many thanks for all your posts too.