How can I persuade the Endo. not to take me of... - Thyroid UK

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How can I persuade the Endo. not to take me off T3?

Hiphypo
Hiphypo

Hi everyone, haven't posted on here for a while. About time for an update!

Briefly: I have been on T3 only (20mcg x 3 times daily) for several years now, after failing to resolve symptoms on T4 or T4/T3 together. It could be that I don't convert properly but no-one ever checked. I was eventually under the care of the late, great Dr Skinner before his untimely and tragic death, so my treatment has not changed since then - but not without a fight.

Tsh has been undetectable, ie, fully suppressed for that period, and I was repeatedly pressured to go back onto some T4. A Dexa scan was ordered and was fine, similarly the Cardio monitoring showed no problems at that time. I gave them to understand that I was aware of the risks but wanted to live a life and not scrape out an existence. This meant I was labelled aggressive. However, I was allowed to continue and the various Endos were not apparently bothered.

This week following an unscheduled stay in A&E I have just been diagnosed with Paroxsysmal Atrial Fibrillation "likely secondary to over treated hypothyroidism". The Registrar from the Endocrinology team came down to the ward and read me the riot act, hand on hip while gesturing at the monitor and saying repeatedly that this was all caused by my taking T3 and I had possibly caused irreversible heart damage.

She calmed down slightly when I agreed to drop the dose to 40 mcg and have a retest of bloods in 6 weeks time, plus a fast tracked appointment to the boss. She is still trying to put me back on T4; I am still questioning the logic of going back to taking something that did not work first time round.

What on earth am I supposed to do in the face of such an onslaught - and another one on the way. They still think that the only way to test for Adrenal insufficiency is on a blood test.

Any pointers and advice will be so very welcome, there must be many who have faced this situation. I feel a sense of impending disaster.

54 Replies
oldestnewest

so what's your T3 level (with range)?

shaws
shawsAdministrator

It just goes to show the ignorance of some Endocrinologists who spread rumours.

We realise that millions seem to do fine on levothyroxine, but there are others who cannot and in the UK it would seem that we now have no options but levothyroxine.

Why force people who are more unwell on it, than before they were diagnosed as hypo. to take or swallow something that affects them badly.

They fail to realise that some people's bodies cannot improve on levothyroxine at all.

Due to you going into hospital and the fact that you're on T3, they jump to the conclusion that it is T3 which is the reason.

As soon as some T3 was added to T4, I improved immensely. When I was on levo alone I had severe palpitations and Cardiologist was thinking of putting an implant in heart to 'see what was going on'. Around that time T3 was added to T4 and my palpiations resolved so I had no need for an op.

On T3 only I have no palpitations and feel well.

We are all different but it can be trial and error. Dr Skinner is missed so badly as he was the 'last of the educated doctors' who could diagnose/treat people without blood tests and he seemed to be the last of doctors who diagnosed and prescribed for people due to symptoms alone.

His devoted staff have spent the time since his demise collating all of their scientific reseach and it was hoped to publish it and stated 'it would shake up the medical professionals".

As I've said before, how many doctors who have to appear before the GMC have had 10,000 testimonials from patients who stated their 'lives' were saved. The unnecessary pressure would have been enormous. Who put in the complaints to the GMC - definitely not his patients. He was discharged as doing nothing wrong.

If we take T3, many have to buy their own now but the fact that you've been taking it for a number of years and want to continue they shouldn't remove it.

Do the medical professionals not realise that if we take thyroid hormone replacements that our TSH can be suppessed but TSH isn't a thyroid hormone. It is from the pituitary gland and rises when our thyroid gland is struggling to produce hormones.

The following is by an Endocrinologist/doctor who cannot take on any moe patients (USA) and its no wonder as they recover their health:-

hormonerestoration.com/

VintageMustard
VintageMustard in reply to shaws

Dr Skinner sounds like a one in a million. Where did he practice?

shaws
shawsAdministrator in reply to VintageMustard

He wasn't an Endocrinologist but a Virologist, whose name became known as he treated 'patients' rather than a blood test.

He accidentally became involved with patients who had hypothyroidism after being sent patients by other doctors/specialists who stated their patients 'had mysterious symptoms'. Dr S found the majority were hypothyroid and didn't believe much in blood tests but on symptoms.

google.com/search?client=fi...

Oh! if there were more doctors like him. Unfortunately there was no one to follow him but his staff have worked so hard over the past couple of years collating all of the Research Work Dr S and they did and hope to publish.

vocalEK
vocalEK in reply to shaws

Extracted from your link: "You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second."

What are your T3,T4 and TSH levels when on 20mcg T3 x3 daily.

Have you had 9am cortisol blood tests too for a starting point on your adrenals. I had very low cortisol before starting T3. Now on T3 it’s bounced back. It was 68 at 9am. It’s now 466. (155-607).

I know we are all different. I’m on 5mcg T3 x3 times daily along with 75mcg T4. My levels are all within range TSH 1.22 (0.35-5.56). T4 10.8 (7.5-14.4). T3 4.8 (3.7-6.0).

I feel really good in these ranges.

The other irony is that if you were on T4 only with a suppressed TSH and the same issue they would blame the amount of T4 you were taking. Tw*ts want it all ways. 🤸🏿‍♀️🥛

shaws
shawsAdministrator in reply to MissGrace

They want 'all ways' to be levo alone :)

Hidden
Hidden in reply to shaws

And often not enough of that!

I'm still on Levo with, so far, fairly good conversion. But beginning to feel like Oliver Twist. Every few months I have to say "Please sir can I have some more?"

At least it isn't Mr Beadle on the other end of the phone!

shaws
shawsAdministrator in reply to Hidden

Millions do o.k. on levo and haven't any problems. Sometimes they aren't given a sufficient dose and if doctor only looks at a TSH result alone, we may not recover as we should.

Hidden
Hidden in reply to shaws

Absolutely! See my !Oliver Twist" comment above!

abirose311
abirose311 in reply to shaws

Millions do OK but is OK good enough? I did OK for 20 years.

I was just such a fat, depressed, cretin that I didn't have the intelligence nor motivation to quesion whether there was anything better!

Now (onT3 and NDT for almost 3 years) I feel reborn, I no longer have to leave myself notes to remember things, I don't have to starve myself to maintain my weight and when I wake in the morning, I actually know what day of the week it is!

I mourn the 20 years of my life lost to Levothyroxine!

Could the AF be caused by years without a correct diagnosis and/or under medication / ineffective medication? I had symptoms beginning 2006 - went to doctors 2008 - formally diagnosed with Hashimotos 2017. Had a baby 2014 - measured small throughout pregnancy, had 5lb baby, still no diagnosis!

The level of ignorance within game general medical profession is frightening. I certainly worry that because I was undiagnosed for so many years, that it has caused heart damage.

There’s also the quality of life argument: without T3 etc we live like poorly zombies for our entire lives, can’t work proper jobs, can’t look after our homes and children well. Feel depressed and poorly all the time, can’t exercise, can’t plan anything in case we’re ill, never go out, ruin all our holidays.... be miserable with our close family and friends.

Or we live with T3 and ok maybe drop dead of a heart attached a little earlier than others. I think I know which I’d prefer. Live one life.

You do need to take the PAF diagnosis seriously, it will only get worse with more symptoms and risk of stroke if ignored.

I had a funny heartbeat for many years which I thought was due to a stressful job - from my early 30's onwards. Eventually I consulted my Greek GP when I was 59 back in 2005. My thyroid was tested and Hashimotos diagnosed.

I have recently moved back to the UK . Am now T3 only and have been for 6 years. We registered with local GP and have been told the Surgery Pharmacist will phone to discuss why we both take T3. Am ready to do battle ! At 80 and 73 it is the only med we take which they agreed was unusual !!

The move has been stressful and yes the palps have increased - kept me awake and blood pressure high at the surgery - not surprisingly ! Had a couple of better days.

There is a book on Amazon - Thyroid and Heart Failure - written when Cardiologists and Endocrinologists came together in the name of research. The book is full of research papers from around the world. OK it is expensive but you can Look Inside on the website and read the contents section where you will see Liothyronine (T3) is the star of the show. Written in 2004 and still most Medics unaware !

Let battle commence !

Aurealis
Aurealis in reply to Marz

Thanks Marz, useful :)

Londinium
Londinium in reply to Marz

And there's this: sick2death.com/thyroid-dise...

Marz
Marz in reply to Londinium

Wouldn't let me sign up for updates ..

Hidden
Hidden in reply to Marz

"Thyroid and Heart Failure"

Had a look on amazon, cost is well over £100. Impossible for me

Marz
Marz in reply to Hidden

.... which is why I suggested to Look Inside at the Contents pages which are quite detailed mentioning Liithyronine. Most of the research papers detailed are available on PubMed ... 😥

Type in the chapter heading and add PubMed and see what comes up on a web search - worth a try. If there is a particular piece let me know and I will try and forward you the info. I saved and bought the book ...

Edit: tried it and it works ! Sorry haven't mastered links on phone !

When I recently searched, I couldn’t find any research which linked T3 with atrial fibrillation (af), the research evidence I found was all to do with high T4 causing af. If anyone else has found any link between T3 and af, I’d love a link please. Personally I’ve found that palpitations are least when dose is optimal, too high or too low and palpitations increase. Research from Australia has shown weight and af are associated, af being associated with being overweight/ obese.

Of course it makes sense to try to get your thyroid treatment optimal, for many reasons. AF is a scary diagnosis and you came across an anti T3 endo at a vulnerable time - how many other conditions are there where the patient is blamed by the doctor! Both thyroxine and Liothyronine medication is bound to sodium, this does hypothyroid patients no favours in the long term as I understand sodium is bad news for the blood pressure and heart. A diagnosis of hypothyroidism and treatment for it makes a diagnosis of af increasingly likely with age. Tough cheese. Have they prescribed anticoagulants? Wish you all the best.

You can tell this unlearned person the following:

"I have been on T3 only for (n) years. During that time my body has changed to adapt itself to this therapy. There is evidence from animal studies that prolonged T3 dosing irreversibly changes some gene activity in the body, which does not go back to its origin when the T3 was stopped. If you put me on T4 only, then you are asking my body to adapt suddenly again, just as if you were replacing petrol as a car fuel for diesel. It can't be done! Changing from T3 only to T4 only is dangerous to patient health, far more than P.A.T. episodes." My wife suffered from this for some time (on T4 only, undetectable TSH). Bisoprolol 2.5mg dealt wth it, not immediately but steadily. Undetectable TSH on T3 therapy is well known. The TSH isn't causing the PAT. It may be that altering your dosing regime to several times a day might smooth things out better. It's a faff I know but it might reduce the episodes.

jgelliss
jgelliss in reply to diogenes

So well put Diogenes . I had TT and was put on T4 only . I went through many P.A.T. episodes over many years . Not until some NDT was added for my T3 mix I had no rasped . The T3 in my NDT made a huge difference for me . The heart has a receptor sights for T3. Not giving T3 to thyroid patients is denying them a healthy wellbeing life . Healthy thyroids make both T3 and T4 . Why deny patients their T3/NDT ??????

shaws
shawsAdministrator in reply to jgelliss

The professionals have made False Statements about NDT - in order to get it removed from being prescribed when it has restored health to many since 1892 and that was without blood tests at all. The doctors went by our clinical symptoms alone and we were given a trial. If patient improved they stayed on NDT. It contains all of the hormones a healthy gland would do. We who need T3, didn't ask for hypothyroidism and if T4 doesn't restore our health we have to have options regardless of the guidelines and not be denied by those who, I assume, are making decisions and who are not hypothyroid but decide what hypothyroid patients have to be prescribed.

jgelliss
jgelliss in reply to shaws

I couldn't agree with you more shaws. Our grandparents and great grandparents where probably on NDT and not on T4 .You would think that they would know better today. If it aint broke don't fix .

abirose311
abirose311 in reply to jgelliss

Why? Money! Levothyroxine is cheap. Our National Health Service is badly run and underfunded. Only one pharmaceutical company have a license for T3 in the UK and my endocrinologist told me that the NHS pay £200 for one month supply! Shameful abuse by the greedy pharmaceutical company, when T3 can be purchased overseas for a couple of Euros a box.

helvella
helvellaAdministrator in reply to abirose311

There are three companies with product licences for T3 tablets. Advanz, Morningside and Teva.

Hiphypo
Hiphypo in reply to helvella

That’s interesting, there used to be only one. Remember the panic when they just stopped manufacturing it and we all had to source from abroad? Progress, of a sort, but was told (pharmacist possibly) that price for 28 tablets had gone up from £50 to nearly £500; that was about one week’s supply for me, no wonder they want me off it!

helvella
helvellaAdministrator in reply to Hiphypo

Yes - there did used to be just one Mercury Pharma (part of Advanz). There have been three for a few years now.

The price, when I just looked at the British National Formulary, is £205.80 for 28 tablets:

bnf.nice.org.uk/medicinal-f...

Hidden
Hidden in reply to helvella

What strength is that for? Not on T3 (or not yet) but just wondering

helvella
helvellaAdministrator in reply to Hidden

All three are 20 microgram tablets - same as Henning Thybon from Germany.

abirose311
abirose311 in reply to Hidden

The T3 I take is made by Unipharma and comes in 25mcg tablets

abirose311
abirose311 in reply to helvella

That's what my endocrinologist told me on my last visit 3 months ago . He said we were moving towards a situation where an alternate supply could be imported from Europe and Brexit halted it. Perhap he doesn't know what he's talking about, although information online suggests that Advanz are based in Canada and Teva in Israel. So perhaps he does know his stuff. Who shall I believe, you or him? Are you a prescribing doctor?

Do you have an alternate explanation why we should pay two hundred pounds for something freely available over the counter in Europe for less than 2 Euros?

helvella
helvellaAdministrator in reply to abirose311

I suggest you believe no-one without verifying!

I am just an ordinary patient with no medical training whatsoever.

You can look at the product licences for liothyronine products in the UK:

mhra.gov.uk/spc-pil/?subsNa...

It isn't the overall ownership of the multinational pharmaceutical companies - but each of these three companies operate within the UK. Teva UK might be owned by Teva Israel but it is a legal company in the UK.

I do believe that pan-European licensing has been curtailed by brexit. Had Advanz withdrawn from the UK market, pharmacies would have been able to import from Germany at much lower cost. But there has been a presumption that UK licensed products will always be prescribed when available which inhibits that under "normal" circumstances.

There is a Competition and Markets Authority investigation into pricing of liothyronine - meandering slowly on apparently without any urgency.

Londinium
Londinium in reply to abirose311

Yes, but the NHS allow themselves to be taken for a £200 ride. They could refuse to pay that ransom, buy it elsewhere or make it themselves. Someone's doing deals and getting backhanders - that's my guess.

shaws
shawsAdministrator in reply to diogenes

Excellent explanation. Thank you.

MissGrace
MissGrace in reply to diogenes

Excellent idea and useful info as always. Spreading the dose of T3 to little and often through the day may well help with any heart issues if your heart is sensitive to the dose. 🤸🏿‍♀️🥛

Hi

My t4 t4 and tsh always been low

My tsh always suppressed

Meds changed to 20mcg t3 and 50mcg t4

Tsh 0.001 T4 4.5 T3 6.8

Endo reduced T3 to 20mcg for 6 weeks

Thinking that if T3 drops slightly they can then increase t4 which will in turn convert some extra to T3 naturally

I have had headaches every day since

I feel like a Guinea pig cos the reason I went on t3 in the first place was cos I count convert t4 to t3?

Going round in circles but have to do what u r told!

Rothy
Rothy in reply to Rothy

Reduced t3 to 10 mcg sorry for 6 weeks

shaws
shawsAdministrator in reply to Rothy

Rothy if you want to correct or change anything in your post, it is easy i.e. click on More and select edit.

LAHs
LAHs in reply to Rothy

No, you do not have to do "what u r told"! Sometimes you absolutely must not do as you are told. You must do what is right for you. In order to do this you must study the subject, take measurements, record how you feel and adjust your meds accordingly - then measure again. Then perhaps go round a few of these circles - but eventually you will come to the right solution and feel well. Do not spend even one day feeling ill as a result of one dose adjustment guessed at by a doc (GP or Endo), you are the one taking the pill, only you know if the adjustment was good or bad. If it was bad, change it to what you know is correct.

Look, docs don't get much education on thyroid matters, as a patient your body knows much more than your doc, have the courage to stand up for yourself.

Rothy
Rothy in reply to LAHs

Thank you for the advice I need now to sustain t3 level but get my t4 increased as 4.5 may be the reason I cannot lose weight.

Tsh never changes always suppressed

Tell them it is your body and you have lived in it for a long time and know what it needs. Tell them research has now shown T3 is not responsible for heart problems and it is their responsibility to keep up to date with the research and not just rely on what they were taught years ago. Tell them you have looked into it and are perfectly happy with the current regime, and suggest they do the same.

Good luck, hug.

SlowDragon
SlowDragonAdministrator

Suggest you get full Thyroid and vitamin testing.....see if your vitamin levels are a bit off

Low vitamin levels can upset things

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

when on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Research looking at Low dose T3 for heart patients

laboratoryequipment.com/new...

Research says Suppressed TSH doesn't affect heart

healthunlocked.com/thyroidu...

Rothy
Rothy in reply to SlowDragon

Thank you

I was taking selenium vitamin d tyrosine ashwaghanda b complex arginine

My Endo told me to stop taking them as they may be interfering with my results

They also doubted I was taking t4 or t3

I seem to be resistant causing low t4

I have very poor eyesight in left eye only started about six years ago

I have mentioned pituitary problem as trh maintains tsh levels and mine is suppressed

I seam to talk on deaf ears

Thank you to everyone who has rallied round in support and with solid info as ammo. You are all amazing! I did type a reply detailed reply earlier today but then the battery died on my iPad and I lost it all. Will retype very soon, just wanted to acknowledge all you wonderful people.

Marz
Marz in reply to Hiphypo

Chapter 16 in the book mentioned above shows the research - Low T3 Syndrone as a Powerful Predictor of Death in Heart Failure ...

LAHs
LAHs in reply to Marz

Yep, I have read a paper on that subject. Low T3 is indeed a reliable predictor of death due to heart failure. That should be written, spread around and shouted from the hill tops at every opportunity.

Marz
Marz in reply to LAHs

... I have also read that T3 is prescribed in ICU for heart patients to aid recovery. Not sure if in the UK or US ...

Same old story..

They may be right to worry about theT3 dose in your current situation though.

I cope on less than 40mcg T3 only, and nearly 200lbs active guy.

I don't think you can be forced onto any med against your will, unless mentally incompetent -or under a court order.

Why not negotiate a RT3 test which could show T4 resistance up?

This is a helpful test -and only avoided by the docs as they claim not to understand it.

Hidden
Hidden in reply to trevg

"I don't think you can be forced onto any med against your will"

True. Probably many of us have given up statins, against doctor's advice, for example. The problem is that you can't force anyone to give you the meds you need either. If they decide to prescribe you less of something, or stop prescribing it altogether it's a different matter.

Persuasion and persistence (while trying to remain polite and not get too upset) is the only way to go then.

trevg
trevg in reply to Hidden

Followed by direct complaints , then via PALS or MP to focus minds.

You technically don't need an Endo or the CCG to ok T3, but most surgeries are group insured and managed -and all under the same rulebook for cover.

What happened to Dr Skinner scared most off!

If your endo takes you off T3 and you want to continue, you might want to think about buying it for yourself online. It's no big deal.

You don't need a prescription nor anyones permission! Find out what your T3 blood level is - to be sure you're not over-medicated.

Finally have time and space and energy to respond properly - even though my heart was not right when I woke today, I actually felt it come back to normal. A quick check with my watch showed it was back in a sinus rhythm, even though actual bpm was a bit low at 40. And with that has come a feeling of both mental and physical energy, my legs work, I can stand upright and breathe properly!

It’s as though I have a future again. I now feel able to take on the medical establishment, thanks to you all.

Again, a huge thank you: I so appreciate all the time and effort and thought which has gone into your replies. I am reading through all the many links to all the extra information with close attention and will try to be as well prepared as I can.

I have also been trying to find my latest blood test results, but without success, so will ask the surgery for copies tomorrow. The only ones I could find were out of date by years. When I get them, I will put them up.

Meantime, take care and have a good weekend.

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