sincere gratitude to the forum : Hi all So I’m... - Thyroid UK

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sincere gratitude to the forum

Charlie-Farley profile image
50 Replies

Hi all

So I’m posting to say I’m feeling better than I have in years.

Last year I was so ill from being under medicated, seriously at the end of my tether. I gave myself a year to try to get well or (I had decided) sack it off (you know).

So last year I sought advice from this forum AND I got a mountain of advice and I was so damn scared, I sat down and started working through it.

I have read papers, lived experience, a whole book and bits of another. I’ve kept records, got printouts of bloods, done private tests, argued for dose increase whilst in range and got onto a maintenance dose of Levothyroxine.

So feeling well and these are my results. I’m not for tweaking.

This is the result that is calibrated to my wellness and I could not be happier.

And it is thanks to this blooming wonderful forum. I salute you!

(I’ll be doing a thyroid and vitamins later in the year)

50 Replies
zzhallk profile image
zzhallk

I've just joined this group wondering if I may need to get my tsh level back down to what is classed as below normal to feel 100% ... think this post implies I do... Will explore further...

Charlie-Farley profile image
Charlie-Farley in reply to zzhallk

Hi zzhallk 😊

I think it’s generally accepted that once on medication for hypothyroidism most people start feeling well at a TSH of around 1., some under. There is a Dr Toft article that can be requested from Thyroid UK that states FT3 is the most important measure.

I’ve logged my journey in my profile so people can see what I have done.

There are recent papers posted about unreliability of TSH and I’m working on calibrating the blood test to my wellness on my health to provide results that would be probably unacceptable to an under qualified GP.

I always say are they treating the bloods or the person? 🤔 (the bloods🙄) So it’s essential to advocate for one’s health.

RedApple profile image
RedAppleAdministrator

Thanks for posting this Charlie-Farley! It's always so uplifting for the incredibly supportive regular members, as well as those just starting their journey, to read success stories like yours. 😊

Charlie-Farley profile image
Charlie-Farley in reply to RedApple

Hi RedApple

I think the speed at which I implemented the forums advice and the fact I was not cowed by any GPs is the main reason for my recovery.

It breaks my heart when people ‘humour’ the GP and go along with advice they know to be wrong in the vain hope that the GP will have an epiphany - I’ve yet to read a case where that has happened.

Lived experience is the most valuable source of knowledge.

Buddy195 profile image
Buddy195Administrator

This is wonderful news Charlie- Farley. So many of us have become better advocates for our own health & wellbeing since joining this forum & seeking advice from fellow members. 🦋

Charlie-Farley profile image
Charlie-Farley in reply to Buddy195

Agreed Buddy195

It’s made me realise you have to advocate for yourself in every sphere of health 😊👍

helvella profile image
helvellaAdministrator

Two years of effort - because the system fails those with thyroid issues.

It is always good to read positive posts. I hope many read and feel encouraged to keep going.

Charlie-Farley profile image
Charlie-Farley in reply to helvella

Hi helvella

I am a relatively straightforward case. from all the lived experience that I have read on this forum I have come to the conclusion timing is everything. If treatment is delayed getting to the sweet spot is far more difficult if indeed achievable.

I see the pathways of the body’s endocrine system somewhat like pathways in the Lake District that require use and maintenance and should this fail to happen then pathways become overgrown or erode. They are very difficult to get, back requiring far more effort than the simple maintenance option that was ignored for years.

helvella profile image
helvellaAdministrator in reply to Charlie-Farley

And that small, even tiny, tarn down near Wasdale head needs me to go and jump in. Won't help it to keep flowing, but might help me to keep cool. :-)

💦💦💦💦💦💦

Charlie-Farley profile image
Charlie-Farley in reply to helvella

If only!

All we have at the moment are the views across the bay to the lakes. We were hoping to move to Wales (Pembrokeshire) but that’s all fallen through now so the Universe must have a plan for us, but what it is I’ve no idea! At least I have reached a stage where I’m well enough to help run the business now with my husband.

Thanks to this forum!❤️

Sparklingsunshine profile image
Sparklingsunshine

Hi So pleased you are feeling well and that there is light at the end of the tunnel. It gives hope to others who are struggling 😀

Charlie-Farley profile image
Charlie-Farley in reply to Sparklingsunshine

❤️ working out what works for you - Not cookie cutter medicine

SarahJane1471 profile image
SarahJane1471

That’s brilliant 🤩 those levels look great. So pleased for you. And yes these knowledgeable people here deserve medals 🏅 x

Charlie-Farley profile image
Charlie-Farley in reply to SarahJane1471

I feel blessed 🥰

McPammy profile image
McPammy

Excellent. So pleased for you. I, like you, got my health back by joining this fabulous forum. If I’d have listened to my GP I think I’d be dead now.

Charlie-Farley profile image
Charlie-Farley in reply to McPammy

Me too! I’d have definitely been haunting a few of them 👻

SeasideSusie profile image
SeasideSusieAdministrator

👏👏👏 Well done Charlie-Farley , what a lovely postive post. Your determination has paid off. So pleased for you.

Charlie-Farley profile image
Charlie-Farley in reply to SeasideSusie

Thank you ❤️

Brightness14 profile image
Brightness14

Your are right in everything you say about this forum. Back in 2015 I had to have my thyroid removed although it was working fine I had a large lump moving my trachea, anyway I was put on Levo for 6 months and had never felt so ill in my life. Then I joined this site, wow, what a difference, like you read up posted questions and took note of the answers. I started myself on Thyroid s, it did take a good few months to sort out the dosage. My latest blood test results are very much like yours, my FT3 is a little higher. I feel well. This site needs a medal.

Brightness14 profile image
Brightness14

I forgot to say thank you for posting and pleased that you are feeling well.

Charlie-Farley profile image
Charlie-Farley in reply to Brightness14

I thought it’s just as important to share good news as concerns.

It gives hope to others as well. Mine was an easy case relatively speaking. Why they think when they completely remove peoples thyroids that somehow just a T4 is going to do the job I have no idea.

DippyDame profile image
DippyDame

Well done ...you are an inspiration to others Lovely to see a positive post.

Determination is so important when fighting thyroid disease!

Stay safe Charlie-Farley

Charlie-Farley profile image
Charlie-Farley in reply to DippyDame

Thank you Dippy

You’re a bit of an inspiration yourself 😘👍

DippyDame profile image
DippyDame in reply to Charlie-Farley

XX

Otto11 profile image
Otto11

That’s really good news. So pleased you are feeling a lot better. Like you I’m in the same boat. I’ve pleaded with my GP’s for at least 4 years that I’m under medicated but they kept saying TSH in range. After being admitted to hospital in Feb for something else I asked the consultant who wrote to my GP asking them to refer me to Endocrinology. GP refused twice. I eventually did get referred after putting my foot down firmly & as soon as he saw my results said I’d been under medicated for years! Am now on my 2nd dose increase of Thyroxine. Hoping to improve more yet 🤞 I do hope you continue to to stay well

What great news x

Charlie-Farley profile image
Charlie-Farley in reply to Otto11

Hi Otto11

So pleased you are getting your increases and so sorry it took so long. I’ve written my journey up on my profile to try to show people you can argue for dose increases when in range if you are symptomatic and there is ‘slack in the system’ i.e. another dose increase and be accommodated in the range.

Make sure you get to the sweet spot. 😊👍

jgelliss profile image
jgelliss

Great Job Charlie-Farley. As yourself and many others on our Great Forum feel very Blessed to be part of the Forum. The members of this forum are above and beyond . They inspire and empower and help us navigate our thyroid journey. Great success outcome.

Great lesson never give up. And keep the good fight going till you reach your Optimal .

Charlie-Farley profile image
Charlie-Farley in reply to jgelliss

And don’t worry if the GPs don’t like you very much! LOL!🤣😂🤣🤣😂🤣

jgelliss profile image
jgelliss in reply to Charlie-Farley

Charlie-Farley I think many of us got desensitised by these Dr's who don't understand/know how to dose thyroid patients.

Charlie-Farley profile image
Charlie-Farley in reply to jgelliss

I had to talk to a different GP every dose increase, 5 in total from starter dose to optimal. Each time having to explain how you could still give a dose increase when a person was in range but still symptomatic there was room within the range to accommodate another dose increase. This thinking all they have to do is a drop shot between the goalposts is easily dispelled when you present the pure logic of interpretation of tests AND symptoms. None could out-logic me. I quite enjoyed the gentle sparring 🤺

SarahElizaDavies profile image
SarahElizaDavies

Wow congratulations Charley-Farley! Thanks for posting this wonderful update and for providing some light in the mess of the thyroid rollercoaster.

It’s strange we feel the need to celebrate you on something that should be so natural and straight forward for every human but we can all understand what an ordeal you have fought to get well. It’s maddening. I am so glad you stayed strong and are now able to provide insight for others on the journey 💓

Enjoy your new found health and wellness 😁

Charlie-Farley profile image
Charlie-Farley in reply to SarahElizaDavies

Thank you❤️

serenfach profile image
serenfach

Really pleased to hear this. Sorry the move to Pembs did not work out. I am in Ceredigion, so we could have met and had a right good moan! It is a scandal that we have to advocate for our own health when the "professional" seems to intentionally want to keep us ill. I tend to go into full "Mrs Thatcher" mode when confronted, cos I can speek propper loik!

I hope all goes well for you and fate gives you an easy path from now on.

Charlie-Farley profile image
Charlie-Farley in reply to serenfach

I’m trying to be stoical serenfach, would have loved a brew and a moan in somewhere like Aberaeron. I’m just telling myself everything happens for a reason. Perhaps in the future! I’m not over my passion for Pembrokeshire.

serenfach profile image
serenfach in reply to Charlie-Farley

Sending a cwtsh.

Charlie-Farley profile image
Charlie-Farley in reply to serenfach

Thank you! One of the words I learnt 🤗

Levojunkie profile image
Levojunkie in reply to serenfach

serenfach - just to say that I think you're onto something. Good for you, channelling Maggie!!Since I was dragged into the NHS's maws nearly 20 yrs ago I've learnt many surprising and unpleasant. I wanted to recover but NHS did nothing but minimally treat the condition. They told me to retire. I was far too young! So I learnt about the condition and I got well again under my own steam. They didn't like that too much! As chance would have it I was commissioned to research/write articles (peer reviewed) covering NHS management and approaches to ill-health/treatment for some publications here and in US . In sum, my working conclusion is that the NHS most often focuses on drug treatment to lift the px out of mortal danger and maintain them at what they deem to be an acceptable level. The corporate culture appears to favour this over curing and restoring optimum health. The latter is time consuming and obviously more costly. It's all more complex than that but this is the gist. This is why we find we have to bang on doors a lot and be our own advocates, which is not easy when you're ill, is it? It really concerns me that there are 13-14 million people with disabilities in the UK, many just surviving not thriving. What the NHS 'saves' is actually funded via support from other state departments. That is, there are no real savings in the NHS approach. My apologies, this is longer than I thought it would be - if it's unacceptable/off topic, I'd understand if the administrators removed it.

Charlie-Farley profile image
Charlie-Farley in reply to Levojunkie

I agree, the ultimate false economy Levojunkie 😊👍

Levojunkie profile image
Levojunkie in reply to Charlie-Farley

Back in the 2000s I found a well-hidden paper from the Royal Economic Society in which the authors had done the sums. Their conclusion was that the NHS's pseudo competitive market system (which produces the quick-fix approach) leads to avoidable fatalities. I am deeply concerned that now all those pigeons are coming home to roost...😢 Another cliche: They've run out of road down which to kick the can.

Charlie-Farley profile image
Charlie-Farley in reply to Levojunkie

Don’t suppose you have a copy or the reference? I truly believe their short sighted approach is costing the uk economy billions.

I was actually met with surprise when I said I did not want to end up an invalid on benefits and my goal was to get well.

Levojunkie profile image
Levojunkie in reply to Charlie-Farley

I'll certainly do my best to find the paper or at least more details. I'm on my 3rd or 4th laptop since then...I may be gone awhile...😉 Plus, so much that used to be readily accessible online is tucked away now.

Quick back-of-the-envelope calculation: so far it's cost the treasury (that is, all of us taxpayers) about £1.5 - £1.7 million for me alone - entirely due to NHS 'Quick-Save'. Not counting productivity losses, family expenses, lifestyle changes etc etc. Multiply by millions of people and, you're right, this culture presents a monumental £liability to UK taxpayers as well as burdening families and friends with practical difficulties and anguish...sometimes creating more need for healthcare.

Horrifying to hear you've had the same sort of response, I'm so sorry. Are they programmed to think we're all 'benefits scroungers' and lazy ne'er-do-wells not wanting to work and do lots of interesting things?! The GP (really nice woman, always treated me with genuine respect rare amongst their kind!) who advised me to 'take early retirement' said it as if she were giving me a gift. 😕❓

Charlie-Farley profile image
Charlie-Farley in reply to Levojunkie

It’s quite surreal isn’t it? I’d appreciate a gander at anything on the false economies of medical practices.

Certainly the way they dragged out my parent’s decline caused untold suffering to both and this extended to years of dying, back-charged to the state to the sum if 100’s of thousands of pounds.

They seem to have found a ‘line’ in farming frailty. We (hubby and I) were carers for a decade and my father was treated aggressively with radiotherapy whilst having already been diagnosed with Alzheimer’s . That radiotherapy took his last good year off him and accelerated the Alzheimer’s. They could have treated conservatively with injections that would have worked for up to 10 years - he died of Alzheimer’s within 7. Antibiotics liberally employed in his extended suffering.

Mum was frequently bump started with Antibiotics going to the brink of death on at least 3 occasions only to be bought back to her bedridden existence having nappies changed 3 times a day (6 years).

Millions of pounds spent to meet out cruelty……psychopaths.

Levojunkie profile image
Levojunkie in reply to Charlie-Farley

"Surreal" Yes! I always feel that I'm entering a parallel universe whenever I have anything to do with the NHS. I'm not being fanciful here - it really does operate as a self-referential bubble which is quite disconnected from the everyday world the rest of us inhabit. I like quoting Charles Moore (now Lord Moore, former editor of bother Daily and Sunday Telegraphs and The Spectator). He has said on several occasions that he "loathes the NHS" 'because it works for its own convenience and not for the convenience of patients'.This is a clear indication of its disconnect from reality. In other places, I've called the NHS 'an autonomous State within a State' with its own laws and culture virtually impervious to those of the host State. It's a Service, but acts as an authority. It's no wonder that the NHSLA litigation budget is about a third of the whole NHS budget each year. Shouldn't this alert governments that there is something seriously wrong going on?

My heart sank when I read about your parents' experiences, these were horrendous and must have caused them, you and your family such anguish. We went through similar journey with my mother. More £hundreds of thousands.

"Farming frailty" - such a painfully precise term for this business. It keeps a whole lot of people in jobs. Think of all those £hundreds of thousands - per patient! - used in more positive ways, excellent frontline/primary and preventative care to spot, treat and halt illness (cf. e.g. Australia, US) before it becomes more grist to the farm's mill. I mean, look at us all here: so many of us waiting on simple tests, having to argue our cases and beg for ancillary tests that are routine in other Western nations...or go private, which so many can't afford. (In personal terms, my thyroid would not be messed up if I'd had access to even moderately good medical support and service years back. I've already sketched out the costs to taxpayers of this).

You went there! Psychopaths. Yes.

And, imho, this culture which supports this psychopathy makes the NHS a monumental net liability to our nation. Competition was one way that Thatcher tried to change the culture from authoritarian largesse to customer service. The culture subsumed the new ways and used them against successive governments to expand their farming practices.

(I could write dissertations on the psychological and political barrel over which the NHS has both ordinary people and politicians stretched and impaled so that we don't see, are too scared to see the wood for the trees...)

Levojunkie profile image
Levojunkie in reply to Charlie-Farley

Good morning Charley-Farley - success!

>Here's a link to the abstract from the paper:

"Competition and Quality: Evidence from the NHS Internal Market 1991-9"

res.org.uk/resources-page/c...

> From which I quote:

"Using these spatial and time differences, the study measures the impact of competition by comparing death rates following emergency heart attack admissions at hospitals that could experience competition with death rates at hospitals that could not from 1991 to 1999. Deaths from heart attack admissions have been argued in the US context to be the ''canary in the mine'' – an overall indicator of poor clinical quality."

"This study finds that deaths were higher where competition was greater. In addition, the magnitude of the negative effect of competition on quality was not trivial: the researchers estimate that the impact of competition on death rates more than cancelled out the 7% per year fall in death rates that occurred over this period due to technological progress."

>Here's a link to the paper which can be accessed through 'your school or library'

jstor.org/stable/4625585

Or you can subscribe to JPASS for free (at the above link.)

Charlie-Farley profile image
Charlie-Farley in reply to Levojunkie

Thank you very much Levojunkie

Sometimes we have to look at the bigger picture to fully understand the drivers that shape our own experiences.

This looks to be one such instance- much appreciated 😊👍

Regenallotment profile image
Regenallotment

Congratulations!! So happy for you 😊

Charlie-Farley profile image
Charlie-Farley in reply to Regenallotment

Thank you ❤️

Levojunkie profile image
Levojunkie

Thank you so much for sharing your triumphs and achievements, Charley-Farley. It sounds like you've worked hard at it, so well done! You're inspirational to me x

Charlie-Farley profile image
Charlie-Farley in reply to Levojunkie

Oh Levojunkie 😊

I just wish there was some way to get the message out there. 😱

Biggest thing is people still being deferential to the doctors- big problem🥹

Levojunkie profile image
Levojunkie

Absolutely spot on. Very hard for px to get such useful messages to others. IMHO, there needs to be a whole culture change to enable us to honestly communicate issues with impunity - and for medical staff to stop encouraging the deference. Again IMHO, it's an unearned tribute and we don't live in the 1950s any more!

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