Thyroid research project

[mstp]

I wrote to complain about the thyroid research being carried out in Newcastle and there have been a little flurry of emails with me getting nowhere. Here is what has been written. The article he refers to can be found in THYROID Volume 31, Number 5, 2021 Clinical Outcomes After Discontinuation of Thyroid Hormone Replacement: A Systematic Review and Meta-Analysis. Here is a link:

liebertpub.com/doi/10.1089/...

I havent read it. Any ideas on how to respond to his final email gratefully received as never had a crisis personally but picked up info from here.

Me:

The optimal prescribing of levothyroxine for underactive thyroid gland treatment does not sound very ethical to me. What will you do if participants experience a myxedema crisis? Are they being told that there is a possibility of this occurring and what to do if this happens? Has this study gone through an ethics committee? Given that people often feel well initially after they stop taking levothyroxine before deteriorating quite sharply, your three month time period is unlikely to provide any reliable data and is putting patients at serious risk. Please stop this study now.

Simon Pearce:

I presume you have read this article to have such a strong opinion. Research is performed because everything you think is obvious, isn’t necessarily true.

Me:

No I haven't read the article. I have personal experience to inform me.

Simon Pearce:

So all people are the same and your personal experience means every other individual on the planet will have the same experience?

Me:

When they are having a myxedema crisis they are the same yes. You never did answer my original questions.

Simon Pearce:

So you stopped your levothyroxine and had a myxoedema crisis after 6 weeks- the time involved in this study? That’s very unlucky as it normally takes several years of profound hypothyroidism to get a myxoedema coma.

[birkie]

What an arse😡.... Has he put in the study he does not recommend this test he is implementing, not be done on patients with no thyroid, or patients with auto immune thyroid illness?Has he studied hashimos, thyroditis, ect

And as for the myxoedema crisis taking years to show, is he awear that stopping thyroid medication can cause some really debilitating symptoms, and can take months to return to normal function?

As he done a survey of thyroid patients on T4 medication?

As he inquired, asked thyroid patients if they have ever come off there medication for whatever reason, how they felt?

He says... So all people are the same, and your experience will mean every other will have the same experience!

No I'm not saying that, but tell me this... Why do endocrinologists and gps treat us as the same, when we're trying to get medication, or trying to get a diagnosis

Mr Pearce 😡

[Charlie-Farley in reply to birkie]

The idea behind the study is SUPPOSEDLY to identify misdiagnosis - how ironic when if they actually did a FULL thyroid panel and could actually interpret the blood tests and relate back to symptoms the rate of misdiagnosis would drop dramatically. Negating the need for the study. Making work for themselves.

They have created such an inefficient methodology using one indirect measurement of the TSH (let's see what you pituitary is doing test) which provides no reliable relationship to thyroid hormone levels that there are just as many people who are being missed completely and left undiagnosed.

Cutting the corners off square pegs to fit them through round holes just about describes the mentality. They try to calibrate the patient to the test. Fruit loops in a robust echo chamber, all blaming patients for deficiencies in their treatment approaches.

Delays in treatment for years and decades, years of low levels of T3 in the body feeding into development of things like osteoporosis and heart problems and they under medicate because they use THS which in many cases will result low levels of T3 (not that they will know) and lead to that which they wish to avoid. Where the hell is the scientific rigour in that?

[birkie in reply to Charlie-Farley]

Indeed... 👏I myself came across this when I was feeling very unwell in 2014, after countless visits to the gp, he kept telling me there was nothing wrong with me,.. "Yes doctor I just love coming to the surgery sitting for 30/40 mins over my appointment time for nothing"😡.

He eventually sent 2 panels of blood he'd done to an endocrinologist, he later told me he was correct in the assumption there was nothing wrong with me.

Forwarded to 2017 I'm now really ill, again he tells me it's the menupause and there's nothing wrong, 2018 I collapse at home get took to gps and new gp diagnosis me on the spot.. Overactive thyroid.

2020 my son gets my medical records, in it we see the 2014 report, saying.

This lady as 2 short suppressed TSH, with episodes of.. thyroditis diagnosis.. subclinical hyperthyroidism, I recommend she as regular thyroid bloods done because of the short suppressed TSH and the episodes of thyroditis.

The gp never followed up, no panel of thyroid bloods were ever done😡I went into thyroid storm, and lost my thyroid in 2019... Well done nhs.

My gp blamed me constantly for the way I was feeling, at one point telling me to pull myself together, it's only the menupause plenty of women go through it.

And don't get me started on all the anti depressants he tried me on, I'll never forgive the lunatic 😡

[Charlie-Farley in reply to birkie]

misogyny is alive and kicking in the NHS for sure birkie. Makes me very angry.....

[birkie in reply to Charlie-Farley]

Do you know Charlie-Farley if it recommends that patients without thyroids, or patients with thyroid auto immune conditions need not apply🤷‍♀️

[Charlie-Farley in reply to birkie]

Actually I don't but I would have thought if it has been omitted in the blurb they will have medical records to filter out later - at least one would hope 🙄

[helvella in reply to birkie]

It expressly excludes anyone without a thyroid for any reason.

I put this all in the other thread.

[birkie]

Mstp... Tell him I'll be a gunepig for his so called research, I'll pop over to Newcastle, I've been off my thyroid meds for 4 days now, so got a head start, he can monitor me for the next 6 weeks..... Ho by the way I have no thyroid is that OK Mr Pearce ... 😡 The plonker

[GlowCoach Administrator in reply to birkie]

I'd strongly recommend that you do at least take your Levo until such time as you can find a private prescriber. A period without Levo can leave you very unwell for a long time.

[birkie in reply to GlowCoach]

Yeah I know form members like yourself 😍... But honestly I've not felt this good in ages, but I'm awear it won't last😔.. Obviously I'm not taking the liquid oral T4 solution the pharmacy as just delivered, just the thought of trying it is making me gag.It was awful the last 2 times I was on it, it's a bummer I feel so well today, but have this awful feeling as soon as I resume the thyroid medication I'm going to be back in hell😔

[GlowCoach Administrator in reply to birkie]

Your body and mind are tricking you. Do not be fooled!

What have you got to take that you would find acceptable in the interim until you can find the right prescriber?

[birkie in reply to GlowCoach]

I have managed to obtain some T3... But as I'm seeing another endocrinologist (urgent referral and gp as prescribed T4 instructions from usless endo I saw in Dec.I've to have bloods done in 5 wks, so I'm bothered about having bloods done on the t3, because the t3 medication does put my T3 up, where the T4 never as, that's why the endo prescribed the t3 over a year ago.

It's a bit of a conundrum

Because the gp is expecting me to be on T4 not T3, and if I stay on T3 till the blood test it will show my T3 level as OK, last one.. t3 4.7 but TSH was 11.58... And I know it will not be like that on T4 my T3 will tank and TSH will remain over range 🤦‍♀️.. Just waiting for gp to prescribe the T4 tables now🤦‍♀️

[GlowCoach Administrator in reply to birkie]

Can your T3 prescribing Endo write to your GP to explain your new treatment plan? That is usual practice.

If your TSH was 11.58 at last test then you need to be careful about decisions that you are making as the mind can become muddled and foggy at that level.

What meds have you taken today?

[birkie in reply to GlowCoach]

The t3 prescribing endo as stopped the t3 😡and put me on T4 oral liquid solution, which I definitely can't stomach, been on it twice, vomited it back, I told gp on Friday I couldn't stomach it due to it making me vomit , but she prescribed it anyway 🤦‍♀️

[birkie in reply to GlowCoach]

Sorry.... No meds now for 4 days... 😔

[TiggerMe Ambassador]

Perhaps ask if he has trialled this route himself, didn't someone say he is Hypo so presumably now cured and off Levo?

[birkie in reply to TiggerMe]

Good thinking Eeyore100.... Be like dr jekyll and Mr hyde try your own experiment on yourself first.. 👹👹👹👹😂😂😂😂

[Sparklingsunshine in reply to TiggerMe]

I wonder if he belongs to that unique class of drug seeking attention seekers? But no I'm sure he's totally legit and really needs his Levo. I'm alright Jack.

[Jazzw]

You tried and kudos for that. . But there’s a fundamental problem here that can’t be resolved.

One can’t argue with stupid.

[arTistapple]

This guy is a master manipulator and I don’t mean to flatter him.

[lidoplace]

It’s very unusual for him to reply and when he does he always ends with a smart arse comment and never answers the question put to him.