NHS T3 : I’m curious on how much your prescribed... - Thyroid UK

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NHS T3

reikimaster profile image
reikimaster

I’m curious on how much your prescribed on the NHS

I have been prescribed 70mcg previously .

41 Replies

20

reikimaster profile image
reikimaster in reply to JAmanda

How do you feel on this amount?

JAmanda profile image
JAmanda in reply to reikimaster

Ah well I feel rubbish so I take 25! Plus 100 t4. I'll chat to the Endo about it next time I see him.

reikimaster profile image
reikimaster in reply to JAmanda

Good luck for the increase !

Currently 10mcg and 100/125mcg Levo. I’m still working towards ‘optimal’ 👍

I came off T4 it didn’t agree with me I felt so much better for doing so . But I do know we’re all different and some tolerate T4 very well . Wish I could

5mcg and 125 t4, TT and rai. I self supplement 5mcg more as splitting 5 is no help to anyone. Xx

reikimaster profile image
reikimaster in reply to Hay2016

How long have you been on that measly dose ? Do they make 5mcg ? Thought they were 20mcg

Hay2016 profile image
Hay2016 in reply to reikimaster

Year and a half. 😂. She doesn’t want me thyrotoxic 🤷‍♂️ They do a 5mcg but very expensive (more than usual) so convinced gp to prescribe 20mcg and I split them. Tried to ask endo to do that too but the nhs isn’t a department store you can order what you want-even if it is cheaper.

Waste makes me cross.

I'm on 225 mcg t4 would i be better on t3 ?

Hi, Levothyroxine didn’t work for me either, made me feel worse. I have 2 faulty genes so very poor conversion. I get my T3 privately and feel much better taking it, although my dose has increased over the last 18 months and I’m now on 40 mcg, (taken as 4x10). Endo. says she won’t be able to increase dose much more as ‘she could get struck off’ and ‘cardiologists don’t like ppl on T3’. She considers the TSH result before deciding, but does also ask me how I feel. But at least I’m getting T3! I had wondered about NHS referral but some on this forum write about 3 month trial on low dose, which wouldn’t do me any good. I hope in due course that the slow-release T3 becomes available.

Wired123 profile image
Wired123 in reply to Warwickian

Is this slow release T3 available in other countries? Sounds like it could be a game changer.

Warwickian profile image
Warwickian in reply to Wired123

I think there has been a pilot scheme in Cardiff as well as the US but my endo said that it wouldn’t be available for a while yet (shame!). Wouldn’t it be great if approved and -hoping for a miracle-same price as Levo !!

I get 45mcg T3 daily through the NHS plus 25mcg T4. I supplement this with my own supply up to 50mcg T3 daily.

A slightly unconventional combination perhaps, but one that suits me and took a few years of playing around (under endo supervision) with dosages to get to.

However, when I used to get the doctor’s report included in my Medichecks results, they used to get into a bit of a tizzy about my non-existent TSH and wayyyy below range FT4 readings (the latest was just 4.8!) So I stopped getting the doctor’s reports...

I have had none of the “expected” problems such as AF or osteoporosis (my recent DEXA scan showed my bones to be in positively rude health for a 66-year old) and my endo and I are quite happy to keep going.

60mcg lio and 100mcg levo but have had to repeatedly fight for it.

This is really interesting to know - i've been on Levo for about 4 years now at various doses. I've been 'in range' for the last couple of years and to be fair to the GP they have increased my dosage when i've explained I still don't feel well. However I'm now thinking is it the Levo that's making me feel worse or whether T3 would help. The brain fog some days is horrendous - I'm an MD of the company I work for and used to problem solving but my Hypothyroidism is the only problem I can't seem to resolve at the moment!

reikimaster profile image
reikimaster in reply to Boatin

You probably need T3. The controversial no go zone ! Insist on seeing an endocrinologist armed with information . Print some out and slap it on their desk this is what I did . I initially got told they don’t believe in T3 when in actual fact it’s the active hormone . Even a small amount can be the most beneficial with T4 but for some like myself I cannot tolerate T4

Saw this post & had a comment..After "proving" to my NHS endo I can't convert levo (by endo progressively increasing the dose & watching by blood test results - t4 increasing, t3 not moving & very deficient) My endo knows I've been buying my t3 privately for years, and the blood tests we do confirn normal t3 range (and of course the suppressed tsh and t4).

Last year, they finally approved combo/dual therapy in my area and although my dose was 75mg t3 (split daily) for the last few years, the only Rx they would issue to trial was 100mg t4/20mg t3. Went through the trial, felt terrible (ALL the hypo symptoms back with a vengeance) and along with blood tests, we have been tweaking for over a year. And we ended back on t3 mono-therapy at 70mg daily. I had my blood test after 8 weeks (back) on this 2 weeks ago today confirm levels were as expected & then they were going send instruction to GP to put on repeat Rx.

And then....

A new endo took over (a visiting endo brought in from another hospital in the same health board - my last one didn't leave, despite what the letter said - they were just asked to conc on diabetic px's). I was called in for an appointment 4 days ago - they started the conversation obviously not having read any of my notes ("so you're here for your annual review of hypothyroidism and you're well controlled on levothyroxine, correct?".... Umm no) and they were completely silent after I explained the process I'd been through over the last year and the point I was at (instructing GP for supply repeat Rx, recent blood tests were back, levels of t3 in the normal range, symptoms were as under control as possible - because we all know they're never great). They called their colleague (lead of endo service, in a hospital 100miles away, I've never seen them) and they decided the only thing I was EVER going to get was 100mg t4 / 20mg t3. End of discussion.

I pleaded to review my notes and what I'd been through under the NHS endo direction, I pleaded for them to speak with the endo I had been seeing and working with. They wouldn't do either. I explained I'd been through 1st line monotherapy with levo, 2nd line with dual-therapy and there were blood tests to show I am not well on these treatments. I explained I have taken every lifestyle measure possible to help (gluten free, all the supplements, gut health care, dry-skin care, macro counting, exercise - cardio and heavy weights etc) - they sat staring at me in silence, repeating this protocol is what we've agreed with the pharmacy service. I asked where the patient fitted into that decision - they were silent.

After around 30min of pleading and getting stone-walled I left (managed to hold in the tears until the car park). I called the secretary of my previous endo whom I am seeing today - who indicates I will get another Rx from them - but it won't be long before the entire endo remit is out-with their control and they want to talk with me today about the dangers of overmedication (which I'm not & again take every lifestyle measure possible to reduce the risks of AF & oesteo) but I suspect they've had a telling off from the lead of service, and this is not heading in a good direction.

So to answer the question!! 😂

I was prescribed 70mg split daily of t3.... Up until last month!

Apologies for the length - that question hit a very raw nerve - i'm tired of jumping through their hoops, to prove what we already know to be tru. But maybe if I stand my ground, maybe they will start to listen???? 😔

They are psychopaths at the top of the NHS - these policies are being drawn up by bean counters. It would be better for the NHS to just ‘fess up’ and admit they cannot fund everybody’s treatment, rather than create drastically pared down treatment regimes that have the primary purpose of saving money not treating the patient.

Then equally appalling, blaming patients for not fitting into their treatment regime.

I am so desperately sorry for your situation 😞

Absolutely right!!

reikimaster profile image
reikimaster in reply to Rkx212

I am so sorry to hear this your Mirroring me - I really didn’t think anyone else had so much in common your doing everything you can possibly do to regain your health and well-being.

I understand exactly what your going through as I have had very very similar circumstances. I self medicated for the last 10 years until I was taken seriously ill last July then I stopped self treating as I was hospitalised.

Now I’m on 60mcg of T3 been dropped from 70mcg. If this dose goes any lower I’m going to have to reconsider self treating again I will do it if I have to because I’m not going down that slippery slope endocrinologist put many people down .

Take care

puffyface profile image
puffyface in reply to Rkx212

Crikey, you poor thing. I live in fear. I am on 50 mcg T3, as I couldn’t cope with Levo. My endo was private, but my nhs gp hasn’t commented on this. What are you going to do next? I have no lifestyle advice though. Can somebody tell me what I should be doing to minimise risk. I’d be very grateful x

How are you feeling on 50mcg. As long as your well on that amount you should be ok . Some people cannot tolerate more than 20mcg some even 10 it’s very individual I’ve learnt. Some people have difficulty absorbing any thyroid medication . If your doing well on 50mcg that’s excellent if your not doing so well and your blood test show that you should be getting your dose adjusted . Good luck I know it’s an awful battleground we tread xxx

It has changed my life! Unfortunately, I have other AI diseases, so I never really know what’s causing what...but I feel SO much better than I did taking levo, and I seem to be tolerating the dose. I have read that there might be a risk of osteoporosis...is that correct? Do you know how to reduce any risk? Good luck to you too 😊

Rkx212 profile image
Rkx212 in reply to puffyface

Thank you for commenting. Regarding lifestyle and risks... They are skirting around the issue of overmedication (or hyperthyroidism) increases risk of AF & oesteoparosis (but they won't say it because I've already explained I'm doing everything I can to reduce my risk).... Can't do anything about age & family history (I wish) but other associated risks that lead to AF and oesteo (diabetes, raised blood glucose, obesity, alcohol, smoking, sleep apnea, lack of exercise) - I rarely drink, don't smoke, very clean diet (heart healthy, anti-inflamm, very little sugar), constantly battling weight, exercise regularly with cardio for heart & heavy weights for bone density.

As well as making sure I take my meds at the correct timing, empty stomach, no caffeine - and to aid absorption I've tried to heal my gut as much as possible (gluten free was a revelation) and supplemented my diet with all the desired vits and minerals (& paid for private blood tests to ensure I've got these levels optimised).

I really feel I've done my bit! It's time they did theirs 😤

Lovecake profile image
Lovecake in reply to Rkx212

Sending you a hug 🤗 you definitely deserve one

tattybogle profile image
tattybogle in reply to Rkx212

Rkx212....gosh .. when they say 'trial ' they're not joking are they .... 'trail by Endo , with foregone conclusion'....ie. ' if it turn's out you need more than we can afford , and we can't use your blood results to say you're overmedicated, then we'll lean on the endo involved and make sure you can't have it anyway' .... nice. Talk about 'not playing fair '... never mind 'moving the goal post's' ... this is stealing the goal post's entirely and running off down the road with them.

Certainly sounds like Endo has been leant on.. and now warned to 'get it on record that he's warned you about overmedication'

Really don't know how you're supposed to fight back if they're going to play so dirty.

It would be better if they could be honest and say .. "you need it , but we can't afford it , because we've stuck with a lousy contract where we're paying a stupid price for T3.... and we're all too scared to rock the boat 'cos we know what they do to Endo's who willingly enable treatment with enough T3 to keep the patient well."

But if they said that , they'd be admitting there was an unmet need for T3 in some patients.. and admitting to that fact is probably a hanging offence too.

I'm so angry on your behalf i could rant ... oh i just have done.

Hay2016 profile image
Hay2016 in reply to Rkx212

Fight, and fight some more. ITT( improve thyroid treatment) on Fb have some good letters and holyshedballs?? Had a fabulous letter template. May be worth a look.

I’m just so sorry to hear your experience. It’s utterly harrowing. Why does a policy come first before listening to somebodies experience and how they feel? It’s so unfair.

40 mcg liothyronine, recently increased from 30 mcg because my TSH was well above the range and increased over the last 6 months, and no levothyroxine (I can't tolerate it). I haven't noticed any difference in how I feel. I have good days and not so good days.

I'm on 100 levo and 2 x 20mcg liothyronine daily.

reikimaster profile image
reikimaster in reply to Lucky14

How are you on that dose ? X

Lucky14 profile image
Lucky14 in reply to reikimaster

Best I've been, I take 100 levo and 20 T3 first thing and I take the 2nd 20 in the afternoon, which works for me.

reikimaster profile image
reikimaster in reply to Lucky14

Excellent x

I am on 60mcg of liothyronine daily. Am dreading an annual review from my new GP as the old one has retired. Not under an endocrinologist any more, he reluctantly agreed to the T3 only when I was so unwell on T4 over 10 years ago. Need to get battle ready!

reikimaster profile image
reikimaster in reply to MaryMary

I know exactly how you feel . You cannot tolerate T4 that is a very valid reason to keep you on T3 . How do you find your dose do you feel well on that amount

I feel well most of the time, but still suffer with fatigue if I overdo things and I need a lot of sleep but don’t seem to wake up quickly! Never lost the weight which I had put on despite more exercise. I feel I could do with more T3, but the blood test results are always just over the top of the range and TSH suppressed. There may be something else not working optimally but I can’t work it out!

reikimaster profile image
reikimaster in reply to MaryMary

Because your taking T3 I believe it does suppress your TSH that is normal . But the GPS and Endo love that old chestnut your overtreated . I wouldn’t worry too much about that . X

Hi Reikimaster

I am so glad you asked this question as I’ve been wondering too.

I am on 75 t4 and 20 t3. I am on a trial and have an appt at the beginning on June with the endo. I would like another raise but after reading the replies you have here I am concerned I won’t get it. I had thought it would be tricky “please sir can I have some more” but how do you say you need more without them just telling you it’s not for you and withdrawing it 🤔🤔🤔 I suppose I have to hope my levels correspond with my symptoms and tell big fat fibs to keep hold of what I have?! It will be interesting!

Hiya,

It's a while since I had T3 but I think it was 40mcg of T3 only.

TT x.

I am prescribed 62.5mcg Cytomel per day but choose to top it up with another 25 mcg of Cynomel as I can't take T4. I started myself on just T3 when I was going towards myxoedema on T4. I lost my TSH many years ago and thus cannot convert T4 to T3. I built the T3 up very slowly until I came to this dose which seems right for me, and I have been on this dose for about 16 years. Since then I have had a long battle with Endos about the T3. I have been shouted at, argued with , interviewed and told at every turn that I am not allowed T3 but I just say that it is my choice to take T3 and I back it up with a copy of the Nice ruling about "if you have been on T3 for sometime and have tried T4 and it does not suit you, then you can stay on T3". As I dont have any thyroid function having lost my TSH, without replacement T3 I would die very quickly. At the moment I am still winning that argument!!! I asked to go onto Cytomel when British T3 became so unreliable and poor. At the time it was also cheaper to import it from America than to buy the British T3. Right now I am on ACE Cytomel from the Netherlands after the local hospital pharmacist had a major scranny trying to source it for me. I now know that I have pituitary failure resulting from a head injury many years ago but my local Endos don't have a clue about the damage that such an injury can cause. Its been a long and hard battle getting them to refer me to a pituitary specialist who understands how you can loose your endocrine function from a head injury.Heather

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