Academic/Research Papers on Safety of T3 and/or NDT

[LindaC]

Hi - can any of you good folk out there please provide any links you have in support of the above - this is really quite important, so I'm hoping someone will pull out the stops.

Thanking you in anticipation

Linda

[shaws Administrator]

Here are some links. The following is by the team of one of Thyroiduk.org.uk's Advisors.

healthunlocked.com/thyroidu...

If they are by Dr John Lowe, now deceased, this is is CV

web.archive.org/web/2010121...

He was also the Director of Fibromyalgia Research Foundation:

web.archive.org/web/2010103...

web.archive.org/web/2010081...

web.archive.org/web/2010103...

thyroidscience.com/Criticis...

An extract from the following link:

For someone taking 100 mcg of T3, we expect your pattern of lab results—a low TSH and high T3. However, your TSH and T3 levels are irrelevant to whether you're overstimulated or not. Two studies we just completed confirm other researchers findings: these tests are not reliable gauges of a patient's metabolic status. Many patients taking T3 have TSH and T3 levels like yours but still have severely low metabolic rates. Their metabolic rates become normal only when they increase their dosages further. Their metabolic rates become normal and they have no detectable overstimulation.

web.archive.org/web/2010103...

web.archive.org/web/2010112...

[LindaC in reply to shaws]

Thank you so very much shaws - just when we [any of us] are just plodding along - with all that entails - I've come down so badly with vertigo/? [had it for decades, lasted a few hours, then went... sometimes for decades with just the odd blip] - it's now coming to 10 weeks on Sunday since a major attack. I never take meds, even saw off T2D without them, but require heavy duty betahistines just to stand up without swaying like Bambi and vomiting everywhere for 6 - 8 hours every other day. So not a happy bunny at all, notwithstanding the predominant hypothyroid issue [low temps = has me FREEZING, punch drunk and uncoordinated any time other than high summer... I've suffered this year, that's for sure ]... now worse things going on with GP/endocrinology.

So thank you, I will go through the above tonight/tomorrow to 'make a case' - it is unthinkable that 'they' still get away with what they're doing to people. BTW, I am fully aware that there are people in way way worse predicaments than me... my heart goes out to them <3 Hope you are still keeping well shaws xox

[shaws Administrator in reply to LindaC]

Yes, thankfully I'm well on my regime as long as tablet isn't changed in anyway which sometimes occurs.

You sound a poor soul right enough and I can sympathise. My dizziness wasn't so severe as yours. Have they diagnosed you with vertigo?

You only need to read the first para on this by Dr L. He was a humane doctor. He minces no words for the effect on people like yourself due to the guidelines.

web.archive.org/web/2010112...

Your meds needs to be looked at particularly with being freezing.

[LindaC in reply to shaws]

Good to hear it - it always gives us hope when things are working for people I got used to having the odd spell of vertigo - so you'll know about dizziness - but this is off the scale [had to go to A&E in Dumfries - lovely b'day drive with husband and I was throwing up in car and couldn't get home - they game me an injection] - this now is bad - maybe Meniere's?

I was doing well shaws on T3 alone [as I had on Armour, but never quite got up to higher amounts likely needed... GPs wouldn't test me, they scared me about 'harm'... yeah, I got harmed alright] until end of Dec 2014 when I had to leave my gym [exercising well and feeling fine, coping with gut issue - something I'd never, ever had - but doing well] due to weird chest sensations [bad arrhythmia since 2007]. Jan 2015 I became 'punch drunk' on waking, stumbling uncoordinated - freezing - legs like 'cores of steel' [my looking around for where some weird source of draft must be coming from] - I couldn't even make a GP's appointment in January [husband went and got some Armour] so I added some Armour back in [only thing I could think of]. They just have no clue. When I say low temps, that has been 34.5 C in summer - regularly 34.4 C in winter but it was the stumbling punch drunk that had me really worried. When it warmed up, I was ok again with usual T3 alone - as if nothing had happened - but asked to see an endo [again]. Big mistake!

Come end June 2015 saw endo who said I'd never been hypothyroid, Drs S and P had got it wrong and I was harming myself taking all that 'rubbish' - so I went for help with those new symptoms and got nothing but utter crap in return - plus my notes are now looking really like I'm deliberately harming myself with hormones, when in fact I've got something else going on. Those things are still happening and now vertigo. So, for someone who never takes any meds at all (I distance thyroid HORMONES from the whole notion of 'medication'), I'm stuck taking this stuff just to stay upright. I'm about to make some Wallace and Gromit trousers for this winter

Thank you so much shaws, I'll check it all out - great to have someone who KNOWS and understands and is kind

[Anthea55]

Has anyone suggested the Epley Manoeuvre for dizziness?

Sometimes vertigo can be caused by crystals forming in the ear canals. The Epley Manoevre moves the crystals to a place where they aren't causing problems. I've had vertigo and it worked for me. Ideally it should only be done by a doctor who knows about it.

[LindaC in reply to Anthea55]

Thank you Anthea55, I've seen that because I had to look it up - GP doesn't seem to think it's that - I'm getting really concerned about it now; as if thyroid issues aren't bad enough - this is unbearable. Had it off and on for years but only for half a day to get through it [falling about, vomiting and having to sleep it off], then pull myself self round from the fragile state and that's it gone for years. But this is 10 weeks solid on Sunday coming I got a letter for an ENT referral saying 'if not heard in 10 days give us a ring' then another letter, 'if not heard in six weeks give us a ring'... now I'm being told I've been taking too much of the prescribed med [ONLY way to keep standing up] - and no further forward. Thank you, glad to hear that this works... I just need to hope I hear soon. xox

[janveron1 in reply to Anthea55]

Download Ellet manoeuvre on line and print! Keep it close and follow carefully. It is Brilliant! I had vertigo brought on by a dose of ppi medication. I had it again and repeated a week of the Epley = gone and hasn't returned. Please try it.

janveron

[janveron1 in reply to janveron1]

Sorry ! That is EPLEY manoeuvre!!

[LindaC in reply to janveron1]

Thank you so much - my GP says it is not this type of vertigo but I have wondered whether trying it might help... or could it make it worse? Had this for 10 weeks tomorrow - it is really severe without treatment. Way things feel right now, it couldn't be any worse [but it's managed with betahistines... I loathe taking any meds, preferring to find the source and treat that... thyroid hormones are not meds!]. To Try or Not To Try is now my Question That is so thoughtful of you xox

Mine is either due to a 'happy slapper' on the other ear or by a minor [but scary] episode of a mini-collapse in a hot car [in shade], where I 'woke up' as if some 'event' had occurred... maybe has, F knows how long it'll take to be seen by ENT [first wait 10 days, if don't hear contact us, then 6 weeks, if you don't hear contact us] - seems like our NHS is in a worse state than even I thought

[Anthea55 in reply to LindaC]

You may be able to find more about the Epley manoeuvre on Youtube.

Or can you get referred to your local hospital's balance clinic? I took my husband to it at our local hospital and the technician was brilliant and knew exactly what he was doing.

[LindaC in reply to Anthea55]

Thank you - I'd head about that manoeuvre [from a Russian FB friend] but my GP somehow determined that it's not that... how I've no idea because my ears are clear and it's 'inside'?

Thanks for the info that the technician with your husband was good - it's the Balance and Dizziness Clinic that I'm waiting for the appointment with... goodness, it's been 10 weeks since this happened and now another 5 weeks left to hear from them with a date... which could be ??? - I asked GP about privately! No one listens anymore xx

[waveylines]

Just wanted to send you a big hug.....what a horrible situation for you. Am sorry I know nothing about vertigo myself so of no use to you. I was also a patient of Dr S -still miss him....lol How on earth can an endocrinoloigst declare you dont have a thyroid problem after all this time when youve been on meds? Beggars belief!!!!!

A good friend if mines father suffers with Menieres do you want me to ask her? Xxx

[LindaC in reply to waveylines]

Thank you waveylines - it's only a tentative diagnosis by an audiologist and a possible from a GP [I'd already considered it... as you do ] but, along with still other unresolved issues, it's a bit of a blow. Yes please if you don't mind asking your friend - really appreciated. xx

Yes, I was in a sorry state when Dr S first saw me [having been rudely ignored by an endo... in 2008 - following 2007 diagnosis of arrhythmia [cardiologist asked if I had a thyroid problem - my quote to endos is, "An optically challenged man on a galloping donkey would have diagnosed me as..." - I had no clue so he simply assumed there was no issue, despite my talking of total inability to lose weight, hideous fatigue and I was sitting there with a square face!]. 2009 - after Dr Chris on This Morning 'diagnosed me' and insisted 'go back again', the second endo was very pleasant and well mannered; I just did not 'fit their little #'s game'.

I could never tolerate T4. Feb 2010 Dr S properly - as he would - started me on that. I couldn't tolerate - great for few weeks - then toxicity. Incidentally Dr P saw me close to my home town, May 2010 (I was trying to get off all supplements that I'd kept adding to try to 'fix myself' - he approved and added a couple more!]. Dr P confirmed hypothyroid diagnosis and added adrenal insufficiency [one of the worst, he said] so I was confident that those two doctors had it 'right' on clinical signs/symptoms + my TSH had been 3.8 and 2.8 - but I was on my knees.

Armour T since April 2010 - Dec 2012 - really good - the small amount of T3, maybe T2, T1, Calcitonin helped... not sure why T4 in Armour tolerated!? Tried to have GP test... no joy whatsoever once two endos said 'Not hypothyroid' I was working in the dark... I kept asking, GP drew blood - sent to labs - labs would refuse due to lowered TSH. Only when my gut bloating started end March 2012 - always had a gut of steel [whipped into shape, knew its place ] - that the further thyroid [other niggling things] picture became complete - like a Royal Flush. Without testing I was too scared to go above 2 Grains per day... stupidly, I may well have exacerbated things for myself. With guidance from informed people, I began T3 alone in Dec 2012 (strangely Dr P suggested this way back and said, due to my state, I was likely to need that alone... I knew little of any of this in 2010 and was too scared... I hear that now from women, telling me now that I'm 'brave' ).

So T3 is my 'hormone of choice' but there is still another [I suspect - with sound reasoning - familial] issue lurking in the background... I'm never quite 'fixed' always something on its way. But, since those old dark days of 2006, I'm way improved rather than sitting slumped, looking like a picture from 1890's. An endo 2012 in neighbouring area, when I began struggling on NDT and toyed then changing to T3, agreed to see me - with info provided to him in advance - he saidn nothing wrong but just wanted to hear my take on T3!! Last endo 2015 [end July and October?] declared that I'd never been hypothyroid and both of those doctors were just wrong - I was ill now from 'taking all of that rubbish'. I wouldn't care, I send info in advance - family patterns - an A4 health chronology - and upfront offered to undergo ANY amount of psych tests [should he wish to go down that route] - but he scoffed and blamed me for x, y, z. Rang me at my home and I argued the toss that these are 'philosophical not scientific issues'... which riled him even more. I'm right in the Black Books now, across the board it would seem.

I AM DOCUMENTING THIS HERE for others to potentially read... another aspect of what 'they' do to patients. We ALL [sadly, I'm not alone] have our tale to tell. I'm as strong as an Ox [and definitely don't look like one anymore ] but it's hard. xx

[LindaC in reply to LindaC]

Apologies if I repeat and for length - a huge blow to me was losing my inability to easily order documents [paper ones!] and to précis

[waveylines in reply to LindaC]

Hi Linda,

I will contact my friend and ask her.

Thank good nesss for those two docs thats what I say!! Have you looked at Paul Robinsons Book living with T3 & they run a face book group re dealing with t3 dosing and the circudanium rhythm which helped me with low adrenal? Thats proabably a silly question as am sure sure you have!! Its thanks to your resourcefulness that you managed to recover as much as you have. Will pm you. Hugs xxx

[LindaC in reply to waveylines]

Thank you waveylines, I ordered it on its release - as usual, I'm either fine and trying to catch up with 'lost time' or not and can't wade through stuff Thank you for the reminder. I was most impressed by Paul Robinson and checked out his FB page... time to start from scratch (again). Look forward to your message. Thanks so much xox

[Clutter]

LindaC,

endocrine-abstracts.org/ea/...

ncbi.nlm.nih.gov/pubmed/269...

[LindaC in reply to Clutter]

Thank you so much Clutter - onward and upward [if I can stand ] xox

[Pinkpeony]

Oh dear Linda , I am so sorry to hear the state you are in .

I'm sure you have considered b12 , the lack of which had me in the same state . I just wanted to die .

I can't believe you have had it for so long without some sort of resolution . I can only offer my sympathy and hope you can get sorted . X Pp

[LindaC in reply to Pinkpeony]

Thank you so much Pinkpeony - so long as I can stand [something I've always said I'm fine as long as... now even that is in question ]. I'll be fine - meds [betahistines] are keeping me upright and, despite never using any of their 'poisons', this time I had to relent! Cost-Benefit Analysis - lie with butt up in air being sick in a bucket - walking like Bambi and housebound - or take the stuff

I don't see thyroid HORMONES as medication: I push that often to people

I'm awaiting a referral - sent a note to my GP asking to go privately - that aspect ignored... I did that because I think the longer the body is 'held in a certain state', the more likely it is to adapt to that... hope I'm wrong! For me this is just another thyroid issue coming to the fore Oh, I'm not hypothyroid and apparently never have been Take care and have a good weekend xox

[LindaC in reply to Pinkpeony]

Oops Pinkpeony apols. My B12 was well over [maybe twice] of the top of the stated range - but I've been told from a reliable source on here that, like thyroid hormones, if it's not getting where it needs to be... what does that say?

[Pinkpeony in reply to LindaC]

No prob Linda . My b12 is always 2000 but on reading posts on PAS some people have a reading of more than this and still self medicate.

Goodness knows where my 2000 is but it ain't doing me any good 😱

Take care x

[LindaC in reply to Pinkpeony]

You know Pinkp, if 'they' tested us at key stages in life (never mind bloody exhaustive school testing!) - with thyroid hormones as a big priority - our individual baseline would be there on record... how much simpler might it be when stuff goes awry for us? Oh, preventative... let's just keep them in suspense and ill, then try to work it all out!

So thank you, that's good to know - yup, how do we know what's doing us good or not... oh, 'how we feel' - novel, eh?

Best to you, take care xox

[galathea]

endocrine-abstracts.org/ea/.... Details of a 20 year long study of t3 and concludes its ok.

[LindaC in reply to galathea]

Thank you galathea - I'm putting together a little 'dossier' now Oh, it's been removed - do you have this?

[galathea in reply to LindaC]

That's very odd, i just checked and you are right, its not there..... But it was earlier on... I checked the link before i posted it..... Will have a search through and see if i can find out anything..

Xxg

[galathea in reply to galathea]

I just found it open on a different tab on my ipad..... Have photographed the page and will now attempt to paste what it said..... Wish me luck!

Scientific ProgrammeVolume editorsAbstract book

Endocrine Abstracts (2015) 38 OC5.6 | DOI:10.1530/endoabs.38.OC5.6

|

Safety review of liothyronine use: a 20 year observational follow up study

Enrique Soto-Pedre & Graham Leese

Author affiliations

Some patients use liothyronine as thyroid replacement therapy as an alternative to L-thyroxine. Trials have examined the potential benefits, but there is little data looking at the relative safety of these two agents. All patients receiving thyroid replacement therapy between 1993 and 2014 in Tayside were included in a cohort study (n=34 355; 319 500 patient years of follow up). Overall 33 955 patients received only L-thyroxine, and 327 received liothyronine in combination with L-thyroxine and 73 on liothyronine alone (total=400). Using unique patient identification numbers, biochemical, prescribing, hospital admission, radioiodine and general registry office data were linked.

Patients initiating treatment with liothyronine were younger (48 vs 59 years P<0.001), but there was no gender difference (85% female vs 82%). They were more likely at baseline to have had thyroid cancer, have a history of previous hyperthyroidism and be treated with anti-psychotic or anti-depressant medication. They were less likely to have cardiovascular disease or be treated with a statin. During a mean follow up of 9.3 years (±5.6 years) proportional hazards ratios (HR) were reported after adjustment for age, gender, baseline TSH, number of thyroid prescriptions and history of thyroid cancer or hyperthyroidism. For patients taking liothyronine there was no increased risk of death (0.78; 95% confidence interval: 0.54–1.11), fractures (HR 0.79; 0.49–1.27), atrial fibrillation (HR 0.91; 0.47–1.75) or cardiovascular disease (HR 0.90; 0.42–1.92). There was an increased risk of mental health disorders (HR 3.27; 1.02–10.52) for patients taking liothyronine alone, but not for those taking a combination therapy. There was an increased incident use of anti-psychotic medication (HR 2.26; 1.64–3.11).

No increased risk of fractures or atrial fibrillation in patients taking liothyronine compared to L-thyroxine was demonstrated. There was an increased risk of mental health disorders if liothyronine was used alone.

[LindaC in reply to galathea]

Thank you so much galathea... no increased risk of MH issues here, only thing that sends me 'off it' is Endos Apols, not seeking to make light of BUT considering the drugs they peddle to unsuspecting souls... I guess we all must take our informed chances via informed choices