T4 works, I have it in writing, it must be true.....

[turquoisea7]

Had this in writing on an email via a friend, who has asked advice (without my asking him to) from the head pharmacist at one of the major London hospitals (a chum of his), who works for the current consultant in matters thyroid related and clearly thinks she knows about thyroid, and all thyroid patients:

"Thyroxine replacement with T4 levothyroxine works in patients, unless they have advanced liver disease or on dialysis. It’s chemically identical to what her body made before she became unwell". (Speechless) (And amazed that I clearly have liver disease even though my tests are lovely)

"you would be surprised at how many people don’t take their meds as prescribed, or take other meds which may interact or reduce absorption at the same time." (so it's our fault if it doesn't work)

"Drs usually consider labs and symptoms together." (actually laughed out loud at this one)

"T4, liothyronine is the active metabolite. (Very rarely used at all these days) Mixing up the two is likely unnecessary, potentially harmful" (she obviously means T3 and has mixed up the two, which lordy, is potentially harmful!)

"there may be a psychological component.. she ‘believes’ her prescribed medicine won’t work, so possibly isn’t taking it reliably either". (obviously if T4 doesn't work for us it's our fault because we just don't believe enough! OH the cult of the NHS, Why are we not all thriving on a placebo then?).

"The lab test D102 is +ve in 30% of the normal healthy population, so a waste of her money" (obviously the normal healthy population are not trying to survive on T4, though, are they love...)

She also had some choice words to say about the former head of that dept who is now a private consultant and I know helps many TUK patients.

And all of the above demonstrates beautifully why so many thyroid patients are robbed of their lives and kept sick.

[Baggiesfan]

You couldn't make it up could you, maybe it's because it's panto season? No blooming wonder so many of us are struggling 😥

[turquoisea7 in reply to Baggiesfan]

And she works in the dispensary for what she describes as the leader in the whole field of endocrinology, esp. thyroid treatment.

Maybe the porter there thinks he's a brain surgeon and does a bit on the side.

[SlowDragon Administrator in reply to turquoisea7]

Suggest you point out to her….

Over 60,500 prescriptions for T3 in England on NHS in last year

openprescribing.net/analyse...

Number of prescriptions is increasing by approx 200 per quarter year (as price has dropped)

Probably far higher numbers with T3 on private prescription

And significantly higher numbers self sourcing

And it’s Dio2 (not D102 )

[turquoisea7 in reply to SlowDragon]

GASP! what people mixing up T3 with T4?!! shocking. non-believers, all.

wishing you a lovely day tomorrow SlowDragon

[Cornwaller in reply to SlowDragon]

They're all deluded heretics, we need to bring them back to the one true way! T4 is the only way, T3 is the devil's own work and as for dessicated....

[turquoisea7 in reply to Cornwaller]

Ssssshhhh! DON'T MENTION the desiccated....

[shaws Administrator in reply to Baggiesfan]

You are correct - we certainly couldn't make it up - as many of us have trialled several replacement thyroid hormones since first being prescribed levothyroxine and - for myself - levo gave me severe palpitations I didn't have previously.

I, for one found, levothyroxine caused far more clinical symptoms than before I was diagnosed. Despite overnight recordings of my pulse by the Cardiologist who couldn't figure out why my heart was behaving as it was during the night.

Even the GP couldn't understand what a TSH of 100 indicated as he didn't inform me that I was hypothyroid.and it was stated that I had no 'problems'.,

Thankfully I have sorted myself with my own judgement and on T3 alone and following the advice given by Dr John Lowe (scientist/researcher and expert on T3).and I now feel well and have no clinical symptoms. (Dr John Lowe was also an Adviser to Thyroiduk before his death caused by an accident).

I would say that the above statement from an Endocrinologist, just confirms what the majority on this forum believe - that they have poor knowledge of how best to treat hypothyroid patients to enable them to be symptom-free and prescribing 'options' rather than levo.

If I had severe palpitations on levothyroxine but have none when on liothyronine I think that is as good as a positive answer.

[turquoisea7 in reply to shaws]

Thanks for this, I find your response reassuring, although your TSH 100 shocking - they probably thought it meant you were really healthy.

Like you I have struggled for many years - 16 years ago TSH climbing, nobody cared, with GP's saying, no idea what's the matter with her.

I started T4 in May and within 3 months couldn't walk any more. My cortisol levels have crashed as my adrenals struggle to fill in. I'm forced to survive, just, on too low a dose; and like you have gathered so many more symptoms including palpitations since starting. It feels like my whole body and brain are steadily dying. My life is in ruins. My husband, who is valiantly trying to keep everything going, and was fit, has developed high blood pressure I can only assume because he's now so stressed; and he keeps taking his bp it in secret rather than tell me what it is.

My current situation, of course I accept, is purely because I don't believe in T4 enough.

SO interesting the author of those quotes says, 'T3 hardly used at all these days'. As if it's old-fashioned. Not just, because the NHS won't prescribe it. More expletives.... but just to be clear she's not an endo, she's a pharmacist who works for some almighty endo and clearly drinks the NHS kool-aid.

So, due purely to my lack of belief I will be starting to add the highly dangerous and clearly old fashioned T3 on or about 11th January - when I can hopefully have got some bloods through the post to one of the private labs we are all forced to use because the NHS won't test our FT3, and seen the results.

I am desperate, desperate to start taking a little tiny bit every day now when I wake up now because nights are so horrendous and I'm suffering so badly, so don't know if I can wait for 11th. Utter, driven desperation, made worse by watching my husband get sick as he tries to keep me going.

Ooooorrrr.......just a lack of belief in T4, eh? (that and the liver failure of course)

[Baggiesfan in reply to turquoisea7]

Oh poor you, I really hope T3 helps you feel better soon. I feel so unwell too, waiting on the Professor at QE Birmingham to spare me hopefully minutes of her time. Maybe I should ask the pharmacist to help me believe in levothyroxine more too? I've seen her registrar twice, July and November and still no treatment since stopping T3 in March due to ectopic heartbeats. Got all clear from cardiologist and still got awful ectopics so obviously not T3 causing it, as expected. I really don't know how much longer I can exist like this, marriage broken up too as I am so awful to live with, moaning how poorly I feel all the time. Managed to get my appt brought forward to 16th January from February as I lost it, again, on the phone yesterday with her secretary. Praying we all get some help in 2023, we shouldn't have to put up with such abysmal treatment surely?

[turquoisea7 in reply to Baggiesfan]

there are so many of us in a hell of a mess, aren't there. it's heartbreaking.

you really have my sympathy. were you feeling well on T3, despite the heart irregularities, out of interest? did anyone know if you had them before T3?

I expect you, like me, are just going to be getting through tomorrow. I used to love christmas.

I'm glad you lost it on the phone if it got your appointment brought forward.

Yes, clearly you need the pharmacist to help you believe. we all need to drink the kool-aid, and then we'll be fine....

it's like some nightmare thyroid version of the wizard of Oz, i just wish we could all tap our heels and go back to where our health was.

i really do feel for you. I feel for all of us struggling so badly.

[shaws Administrator in reply to turquoisea7]

T3 resolved all of my clinical symptoms, particularly severe palpitations I had during the night when prescribed levothyroxine.

I had many overnight recordings by the cardiologist but he couldn't figure out what was causing the palpitations.

I, personally, believe that if a person isn't improving on levo (and I know many do fine on it) that they should be offered either T3/T4 combination or liothyronine (T3) alone (both as a trial).

[turquoisea7 in reply to shaws]

thanks very much indeed for taking the time to write this, it's really encouraging. I thought the guidelines actually were that people were offered an alternative....but clearly not any more, or not unless you've been through so much testing they give up. I'm too sick now to even get to a hospital for any kind of testing so am essentially banking on a little T3 to get me well enough to see what/if any other issues remain and then be able to look at those. But given I didn't have any before T4, knocking wood I have as positive an experience as you have. thank you

[tattybogle in reply to turquoisea7]

It seems from accounts on here , that it is vanishingly rare for NHS GP's/ endo's to actually 'offer' the alternative of a trial of T3, when patients say they didn't get fully better with just Levo.

Only when people find out about it for themselves , and only if they manage to find their way past all the gaslighting , and then push like hell for a long time ,then , and only then , they may be 'offered' it.

By and large, it is only 'offered' to the most assertive/ confident of patients who have not seccumbed to the quicksand of "levo gives you all you need, so your thyroid hormones are not the problem anymore , it must something else, or perhap's it's psychological"

So most just get 'offered' some antidepressants, or some talking therapy, or a referral to 'any other department known to man'

The fact that i was never made aware of it in 2005 when i could have been ,by a GP who i'm sure would have known about it ,and could have got it prescribed for me more easily than is possible now ,.. but instead of this they fed my self doubt for the next 15yrs..... is one of the things i find it hardest to forgive the medical profession for .

[turquoisea7 in reply to tattybogle]

I find it unforgiveable to be gaslighted by someone clearly far less intelligent than I am. And to have suggestions made about psychology by a pharmacist when ahem, I have a doctorate in psychology, I reckon that may be more my sphere of expertise than hers...

[shaws Administrator in reply to turquoisea7]

In the last few months 'other' T3's have been introduced for prescription and the fact that these are cheaper than previous ones - some Endocrinologist (or - hopefully - GPs will prescribe for the patient - even as a trial!!

btf-thyroid.org/liothyronine

[shaws Administrator in reply to turquoisea7]

Dr John Lowe, scientist,doctor/researcher and Advisor to Thyroiduk before his death due to an accident. He stated that a one daily dose of T3 had to saturate all of our T3 receptor cells and then it sends out 'waves' that could last up to three days.

I trialled this and took one dose of T3 and it did last 3 days and I felt well and had no unpleasant symptoms.

tpauk.com/main/articles/the...

[tattybogle]

On the first day of Christmas, my Endo said to me :

..... Are you taking your levo, my dear ?

On the second day of Christmas, my Endo said to me :

.... Levo works for all ,

....but are you taking the Levo my dear ?.

On the third day of Christmas my Endo said to me :

.....Are you back again ?

......Levo works for all,

.....but are you taking your levo , my dear?

On the fourth day of Christmas my Endo said to me :

.....Look, i said already ,

.....(when you came before) .

....Levo works for all ,

...but are you taking your Levo , my dear?

On the fifth day of Christmas my Endo said to me:

.... All ...in ...your... Head.

.....Look, i said already ,

....(when you came before),

....Levo works for all ,

....but are you taking your Levo , my dear?

On the sixth day of Christmas my Endo said to me :

.....Hear what i'm saying,

.... All .... in ...your.... Head.

.....Look i said already ,

....(when you came before) ,

....Levo works for all ,

....but are you taking your Levo , my dear?

On the seventh day of Christmas my Endo said to me :

....Why are you whinging ?

....Hear what i'm saying

.... All ....in ....your... Head.

.....Look i said already ,

....(when you came before) .

....Levo works for all ,

....but are you taking your Levo , my dear?

On the eighth day of Christmas my Endo said to me:

....Is your mood sinking ?

....Why are you whinging ?

....Hear what i'm saying

.... All ....in ....your... Head.

.....Look i said already ,

....(when you came before) .

....Levo works for all ,

....but are you taking your Levo , my dear?

On the ninth day of Christmas my Endo said to me :

.... Reduce your Levo ,

....Is your mood sinking ?

....Why are you whinging ?

....Hear what i'm saying

.... All ....in ....your... Head.

.....Look i said already ,

....(when you came before) .

....Levo works for all ,

....but are you taking your Levo , my dear?

On the tenth day of Christmas my Endo said to me:

... My word is law ,you know,

... Reduce your Levo ,

....Is your mood sinking ?

....Why are you whinging ?

....Hear what i'm saying

.... All ....in ....your... Head.

.....Look i said already ,

....(when you came before) .

....Levo works for all ,

....but are you taking your Levo , my dear?

On the eleventh day of Christmas my Endo said to me :

... TSH is all i know ,

... My word is law, you know,

... Reduce your Levo ,

....Is your mood sinking ?

....Why are you whinging ?

....Hear what i'm saying

.... All ....in ....your... Head.

.....Look i said already ,

....(when you came before) .

....Levo works for all ,

....but are you taking your Levo , my dear?

On the twelfth day of Christmas my Endo said to me :

....Why are you still coming ?

.. TSH is all i know ,

... My word is law, you know,

... Reduce your Levo ,

....Is your mood sinking ?

....Why are you whinging ?

....Hear what i'm saying

.... All ....in ....your... Head.

.....Look i said already ,

....(when you came before) .

....Levo works for all ,

............... BUT ARE YOU TAKING YOUR LEVO , my dear ???

,

[turquoisea7 in reply to tattybogle]

 tattybogle absolute genius, THANK YOU so much for the smile.

I can hear the 'all in your head........' with the 5 gold rings refrain, just perfect.

And so timely, as in my previous life I would right now have been out playing my fiddle for the children in the village to sing carols to while 'father christmas' comes up the road in his 'sleigh' (decorated pickup truck). I can't even get out of the door. I miss being a person, desperately. If I could only believe....

[tattybogle in reply to turquoisea7]

You must try harder .... Tinkerbell is crying.

Don't you know every time someone say's "I don't believe in Levo"

.... an Endo dies.

It's tragic.

[turquoisea7 in reply to tattybogle]

then I'm making it my mantra

[Alanna012 in reply to tattybogle]

I am almost crying!😂😂😭

You have to release this as a Christmas single on spotify, my money is it will become a number 1 hit!😂

I reckon'Why are you still coming' is the phrase my GP would love to use but can't, instead she just puts higher octaves of exasperation in her voice! It's understandable as I've been to see more often than twelve separate days😄

[Delilahmy in reply to tattybogle]

fabulous xx love it … but are you taking your Levo my dear xx

[Sharoosz in reply to tattybogle]

Tatty, that is hilarious (though sad, because it's true, especially "my word is law")... Thanks for your creativity. We all have to be creative in the face of such doctors!

[Aurealis]

a training need identified…

[JAmanda]

Swear words!!! Aaagh.

[Charlie-Farley]

Expletive, Expletive, Expletive 🙄

What an expletive 😱

Oh turquoisea7, the pig ignorance is so entrenched. If only we could start a naughty list of Doctors and Endos to avoid - mind you it would take days to scroll through it. The recommended list is so much more concise.

Self advocacy and a good basic knowledge in our disease is the only way. I’ve crossed the Rubicon - I’ll never trust again.

[Hidden in reply to Charlie-Farley]

Same! I have to be careful what I say to who because most people look at me like I'm delusional when I say I'll never trust a GP again.

[turquoisea7 in reply to Hidden]

There is an old man who shuffles up and down my street once a day. Lovely bloke. He found me outside the chemists in summer (when I could still walk) after collecting my T4, I was struggling to stand up then. I burst into tears and told him my thyroid had packed up, he said oh, so has mine, I am on thyroxine. I asked him what he takes. He is on 100mcg and has been for ten years -must be a good 15 stone so nothing like a bodyweight dose for him - he knows nothing about brands, TSH nothing. Said his GP had told him never to read anything about it other than on the NHS website. He said, his GP is so kind, and rings him he needs an increase (I assume when his TSH has gone over the top). He suggested I use his GP as he is so nice and helpful and so clever. I said, I don't want to end up like you! He said oh, no you won't, it's just that I've got chronic fatigue since my thyroid happened. (I gritted my teeth at this point). And wouldn't you believe it: he's now fitter than me, I can't move; and of course, horror of horrors, I ended up with the same GP as him. He has less than one brain cell when it comes to thyroid and that's sitting in a corner picking it's nose and admiring the end of its' finger.

[LucyYoga]

Gobsmacked but sadly not suprised. We are so lucky to have this group… the wealth of information and knowledge I have gleaned from being on this group for a month has been mind blowing. Thankyou everyone

[Christabel]

You could apply at least some of that to a variety of conditions. The psychological component, for instance.

[buddy99]

The patient is ALWAYS at fault. There must be a course in medical school that teaches how to immediately find that fault (be it noncompliance, mental issues, ignorance, idiocy or whatever). It just blows my mind that this is an approach displayed by doctors internationally. I'm also always surprised how great bs is spouted with even greater confidence/arrogance. But, of course, it is the PATIENT who is the annoying ignoramus, the layperson who does not have the right to feel other than what the doctor (or the test result) says and therefore are mentally ill. If it weren't so serious I would just laugh about it.

[turquoisea7 in reply to buddy99]

since diagnosis I've started having frequent nightmares about medics, a bit like the 'walking dead'. It's like they are willfully narrow minded and stupid, but for me it amounts to cruelty. I keep thinking there must be some kind of human rights or at least patient abuse involved in refusing to give people medication they need, reducing it, and so on. If I still had a brain I'd pursue it - there must, must be something in that.

[buddy99 in reply to turquoisea7]

I can relate to your nightmares. When I first was brutally dragged into the realization that my trust in the medical system had been very much misplaced, I would wake up in panic attacks. I repeatedly had nightmares such as doctors taking off my legs with me pleading that I was there because of my thyroid and them just rolling their eyes or even laughing at me (and still proceeding with cutting my legs off). I got help because my anxiety got really bad and the psychologist felt that my symptoms could be likened to PTSD. It is absolutely amazing what a cluster of ignorant, arrogant, condescending and untrustworthy doctors can do to one's mental health. I never would have thought. And at the same time they are so tremendously powerful that they hardly ever are held responsible for anything. They can absolutely ruin a person's life and are always believed over the patient. I had a spiteful doctor make an attempt to get my children taken away, another consistently falsify my records and another lie to my insurance company in my disfavour. A doctor always is believed over a patient. They are incredibly powerful. Not much touches them.

[turquoisea7 in reply to buddy99]

Goodness that sounds horrendous, I do feel for you. mainly about being injected with embalming fluid or chased around by hoards of doctors trying to fill me with something that will turn me into a zombie. Already happened, though, hasn't it, so it's just my poor brain trying to come to terms with the shock.

I wake up panicking, too.

Your point about medical records interesting to me though because several of my bloods have disappeared and I've got bits of someone else's referral notes on mine, I mentioned this a couple of weeks ago on another post. But I've since got a read through all my notes and right back to when my TSH was first up at 4, the GP's were saying, hmm psychiatrist? something not right here, she's perfectly healthy but has this anxiety and fatigue....

[serenfach in reply to buddy99]

I was diagnosed with PTSD but it turned out my TSH was 22. The goitre was missed and I was sent to the chiropodist as I was complaining of numb feet.

The GP actually said "come back when you know what is wrong with you".

[turquoisea7 in reply to serenfach]

PTSD and hypo have some identical symptoms. It seems common sense to think people with PTSD and no hypo also have exhausted adrenals. The numb feet, I'm with you there, all of last winter I could hardly feel one of my feet at all, but I wasn't allowed to discuss that in the same appointment as my hypo diagnosis because it was a foot and so clearly nothing to do with my thyroid. Of course.

[Lalatoot]

What the person does not write is that your body/thyroid also made 10mcg approx t3 as well as the t4. So it is not a straightforward swap of thyroid t4 for synthetic t4. Some folks need to replace the t3 that their thyroid would have made and no amount of t4 seems to do that

[turquoisea7 in reply to Lalatoot]

I'm with you there

[Chriskisby]

Speechless! But I wonder why I am not one bit surprised?

[Sharoosz]

Ay-yay-yay... If it wasn't true and so sad, it would be hilarious. I was just at a new endo in Poland, what a waste of time. (and I checked her ratings before I booked.) the minute she said tsh is the only result that counts, my heart sank. I sort of tested the waters a bit asking about other tests. Then she suggested I do a blood test in the clinic that day, to which I said, I've taken my tablet and eaten breakfast. She waved her hand dismissively and said that didn't make any difference. Now that I would have expected in the UK from an internist who knows nothing about thyroid, which would seem to be the majority) but it shocked me here. I guess the next generation of doctors here will be a big, hopeless Big Pharma write-off. Sigh.... Ah well, at least we have a community to help us. (I didn't bother sharing anything I'd learned here and from my own research - that's a waste of time with a doctor like that.) Anyways, Merry Christmas and a happy new year to you all!

[shaws Administrator]

My whole body reacts badly to levothyroxine (T4 alone). My heart is affected badly as levo causes severe palpitations.

I spoke to another lady who had hypothyroidism and she was delighted with levo so it does seem to work for many hypo people and they wont be searching the internet for advice.