T3 prescribed ...surprise surprise! : Well... - Thyroid UK

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T3 prescribed ...surprise surprise!

Catseyes235 profile image

Well despite much scepticism, mainly from others and only waiting two weeks for an appointment with an endo I was prescribed T3. I didn’t have to suggest it. Nor did he want extensive blood tests. He simply listened....to a potted history of my thyroid ups and downs, listened and sympathised with my complaints of previous treatment and understood that having a very low TSH and being told I was overmedicated when I felt fine was tedious and needed addressing. As I said I only discovered through Patientaccess that this had been so for 15 years. So now at the tender age of 71 I’m introducing some T3 to my meds. Trouble is I couldn’t remember exactly what he said about what to take and when so rang the hospital and he’s writing a letter. Let’s see how it goes!

44 Replies

Well done!

Always best to introduce lio "low and slow" - so 1/4 tablet for the first week, prob with your levo; then 2 x 1/4 tablet (ie 2 well-spaced doses) for the next week or so until you build up to a whole tablet, (or stop part-way to a whole tablet if you feel tip-top on less) - eventually taking it in 1, 2 or 3 doses as best suits you.

Good luck x

SlowDragon profile image
SlowDragonAdministrator in reply to fuchsia-pink

That’s assuming T3 tablets are 20mcg

Thanks ..yes they are 5mcg! Funnily when he talked of brain fog and tiredness I said it was difficult to know as it could just be getting older or the stroke I had last year and you can just get used to thinking this is the norm?

Maybe it’s psychological but feeling like something has ‘lifted’. Only been a few days but not sleeping much during the day, sleeping better at night and bit more energised!? Just wish it wasn’t so darned hot - my Scots blood hates this Southern heat and of course there is the worry it’s thyroid. Will update when all settles.

Best wishes!

I’ll be guided by the endo I saw. Tabs are 5mcg

Those are quarter tablets to start with then [compared with the more usual 20 mcg]! So should be ok :)

I trusted my endo too initially ... but his idea of a "starter dose" of lio was 2 x 20 mcg tablets. Clearly a mistake as he halved the dose 6 weeks later in an appointment that lasted less than 30 seconds.I have the stomach of a rhino so this didn't make me ill (surprisingly) - but it HAS given me vitiligo - white patches on my fingers and face, which are quite prominent in the summer - which is permanent and I'm annoyed about ...

Blimey ..that’s not good. Is the vitiligo associated or is it another of those auto-immune diseases? Unfortunately we are prone to other auto immune disorders but there are beginnings of research into all of this. The fact that the majority of those with auto immune disease are women speaks volumes.

I was lucky as this endo talked with me (not at me!) listened to my past history of treatment, for a good 10-15 minutes, and started me on a low dose.

Best wishes!

vitiligo is another autoimmune. My Grandma had this also.

Let’s hope that in a hundred years from now there will have been much more research into autoimmune disease and genetic links too. I’m one of 5 in my family with thyroid disorders and one of three with Macular Degeneration.

shaws profile image
shawsAdministrator in reply to Catseyes235

Yes, vitiligo is another autoimmune condition. I am sorry members of your family also have Macular Degeneration.

I find it a strange coincidence that I managed to get past 50 without it at all ... and then got it oh just after I was over-dosed on lio! Dr Google lists it as a symptom of over-medication ...

I reckon menopause and other hormones may have some effect. I was fine until I came off HRT when my TSH plummeted! My daughter has that gene that may mean T4 conversion isn’t good and has been on NDT instead.. guess I must have it too.

Great news!

I'm wondering why you're even coming here for advice? I started a reply to you, then scrubbed it and went back to read your previous post first. I realised I was was right, you came here, posted, then proceeded to denigrate the advice from some very experienced posters. Now you've had another go at them! They give up their time to help, for free, if you don't care for their advice why ask? I've been helped a lot by people here, I'd still be feeling grim otherwise.

I hope you're sorted because being hypo or hyper is not a good place to be and my experience of 3-4 Endos has been that they are really behind in thyroid knowledge and very dismissive of symptoms so you've been very lucky to find one who is understanding and helpful. I've had to self medicate to feel better which I couldn't possibly have achieved without the information and support from this forum's members. I'm grateful to them even if you're not!

Catseyes235 profile image
Catseyes235 in reply to Espeegee

Good luck with your own treatment. I haven’t seen an Endo since 1982 and from reading mainly negative posts about endos on this site over many years and getting the impression nothing had changed I was pleasantly surprised by my encounter. I don’t need what seem to be personal comments on my opinions. Did I say the scepticism came from people on this site? No in fact it wasn’t.

I asked for advice because I had a stroke last year and my memory isn’t so great and thought there may be things I should ask. (As it was I had cystitis and forgot everything - just getting there was a challenge !)

I shared my post to let people know there are good news stories, that there are good outcomes and good caring endocrinologists!

Good doctors and endo's are hard to find, it's encouraging to read they are out there. My TSH is barely detectable and I am on a huge prescribed dose of t3 only. My Dr and Endo understand that t3 does that. I have had heart scans, bone density etc and all ok, I also wear a smart watch that tracks heart rate, blood pressure, Temperature, sleep etc all are normal, so I show no signs of being hyper. We are all different so trying to squish us into some random range is counter productive.

Catseyes235 profile image
Catseyes235 in reply to endomad

That’s really good to know thanks. I’ve also not had hyper signs although in this very hot weather I am feeling a bit sweaty ....?

I’m thinking I’ll be okay on a T4/T3 combo but early days. Trouble with those watches is I seem to get a reaction to the straps. I was thinking of getting a watch with multiple alarms but got a small clock/alarm instead.

That’s one thing I worry about - being somewhat forgetful - is taking meds when out. (Or even in at times) How do you get on with that?

shaws profile image
shawsAdministrator in reply to Catseyes235

You could get a small clock with an alarm, or put an alert on your mobile phone (if you have one). It's good at times to have some 'reminder' of what we're supposed to be doing.

Catseyes235 profile image
Catseyes235 in reply to shaws

I set iPhone for alarms for blood thinners and statin but it drained my batteries! Small clock/alarm seems to be working so far. I need small day or two day pill box . Got one online which turned out to be 4 x size I was expecting!!

endomad profile image
endomad in reply to Catseyes235

I take my complete 100mcg t3 in one dose at bedtime, splitting the dose left my hypo. Yes I get eczema from the metal on watch strap so I cut it off and used Velcro. Keeps my Dr happy that he can check my vitals, I have no tremor, I sleep straight after t3 which amazes everyone, Endo also tests my shbg annually.

shaws profile image
shawsAdministrator in reply to endomad

One of TUK's Advisers was also a scientist/researcher and doctor and he, too took his dose in the middle of the night when he awoke, so that nothing interfered with T3 uptakes and he took 150mcg as one dose. He stated all of the T3 receptor cells were then saturated and sent out 'waves' throughout the day.

I take my dose of T3 around 7 a.m. daily. when I awake and wait an hour before breakfast.

Catseyes235 profile image
Catseyes235 in reply to shaws

Interesting. I take my T4 v early then go back to sleep for at least an hour. Will see how it goes as there was talk of possible palpitations if didn’t separate dose of T3. I’m pretty sensitive to drugs so will play safe for now.

I split my dose into 2 to start with and avoided taking with levo. After a month I split again into 3 due to palpatations and generally finding it hard to take. I did this for about 3 weeks then reduced back to 2 doses once i was sure the palapations had passed and take one with levo now first thing.

I say this just so if you find you are experiencing palpations and odd things you don’t get too despondent. It passed for me and others too.

Well done on your prescription and good luck with it 👍🏻

Thanks You don’t say how much you were taking though! I’m only adding in 2 x5mcg with 75 mcg T4. Yes endo told me about palpitations. Take care

Oh sorry! Same as you. I reduced to 75mgc levo from 100 mcg and added 2 x 5 lio. It was the second 5mcg dose I split so I took one before bed. I did find that I couldn’t move the whole dose to bedtime as it kept me awake. That’s better for some but not for me. We are all different. 6 weeks later I got another 10mcg so dose was 2 x 10mcg twice a day. My only advice is the people on here really are right. Slowly is best. I thought it would be a little magic pill that cured all my ills. 4 months or so later I’m still going. I have just raised my levo to 100mcg. 🤞🏻 That helps. I certainly wish you all the best and keep posting so we can see how you’re getting on x.

Thanks for reply. Endo suggested morning and late afternoon/early evening so am sticking to that about 8-9 hours apart. So about 9-10 and 5-6. Early days and will certainly be posting how I get on. I take my T4 when I wake early an hour or so before breakfast (then back to sleep after answering the call of nature. ) Hope you reach a final optimal solution too.

That’s sounds like the advice from my endo too. Although I have to say that was before he said my tsh is too low for any more. He will still prescribe 75/20 but I’d have to go it alone for extra that he agreed I needed as he has to take the conventional nhs line. Lol. Good luck with yours! 🤞🏻🤞🏻

Haha I thought I heard the number 75 but as I said elsewhere I completely forgot much of what he said as soon as I left. So it’s 75 /10 for now and see how it goes. Still waiting for a letter to confirm.

Catseyes235 profile image
Catseyes235 in reply to shaws

Just a thought but isn’t 150mcg of T3 a lot? If my 5mcg is equivalent to 20-25 mcg T4?

endomad profile image
endomad in reply to Catseyes235

There are people in this group that take more than 150mcg, I was on 150mcg for 9 months but I didnt feel any more improvement over 100mcg, for me there is no point taking the extra if no benefit, some people can tolerate large doses, some cant. T3 can be quite rough if you have low tolerance, its why many prefer NDT its much more gentle on the system. Palpitations can also mean the opposite, I occasionally get them 8pmish an hour before my usual t3 time, taking my t3 right away instead of waiting stops the palpitations. There are absolutely no set rules where thyroid is involved, over and under replacement often share the same symptoms.

Catseyes235 profile image
Catseyes235 in reply to endomad

You’re right . Everyone’s different. Endo not keen on NDT ..which my daughter takes - as dosage can vary but it suits her. As I said to him I can’t really tell if I have brain fog etc after all these years as it may just be getting old! However I do feel lighter mentally and more energised but that may be psychological! Onwards and Upwards ...

As you have no thyroid that is not particularly unusual. Lots of endos are more inclined to offer T3 in such cases.The endo I saw recently told me at the very start he could not prescribe T3 due to cost. I know that’s not a valid reason. I didn’t even use the term before he told me. However he was happy to tell my GP that self sourcing ndt is fine.

He is also testing my pituitary gland due to very low TSH. He also advised I have iron deficiency anemia and testing other hormones. Iam surprised the endo you saw isn’t looking into your health in more detail. Clearly just given you a tablet and sent you packing.

I do know that lots of forum members have reason to be sceptical. Just count your blessings.

Not much of a dispensary that did not give dosage instructions with the T3.

Catseyes235 profile image
Catseyes235 in reply to Miffie

Dispensary did have instructions for taking T3 but not how much T4 and couldn’t remember what endo said. As he himself talked about brain fog he should really have written it down! Me having cystitis for first time in years didn’t help my concentration. So there was no feeling of being issued pills and sent packing. Thought he was a good listener who took time with me.

I called hospital and should be getting letter v soon. Queue for Boots, who seem to have taken over dispensary, was huge so sadly not time for discussion. As to cost I do feel bad that it costs so much as I also receive expensive Eyelea injections for Macular!

Scepticism was mainly my daughter who takes NDT.

Anyway I just wanted to share a good news story! Best wishes for your own...

Miffie profile image
Miffie in reply to Catseyes235

Sadly I saw no mention of confusion over T4 in your original post only T3 was mentioned. I should perhaps have read between the lines. I hope that the letter regarding any potential changes to your T4 dose doesn’t take much longer as you have already been taking what you think is right for 17 days.

I don’t think you need to concern yourself about the cost of any treatment for which you have a clinical need. I am aware Eyelea seems pricey for the NHS but with the risk of a heart attack or stroke it carries it comes at a price for some patients as well. Was that the cause of your stroke?

I think in your shoes I’d have asked for a trial of Avastin which I understand has fewer health risks and can treat macular degeneration successfully.

Good luck going forward.

Catseyes235 profile image
Catseyes235 in reply to Miffie

No worries. No the stroke was caused by cholesterol but as this can be raised by hypothyroid conditions and I’d dutifully reduced T4 as TSH said I was overmedicated..... makes me wonder. I did have to wait for 12 weeks after stroke to have next Eyelea and one eye is still not as good due to the long wait. Eyelea is definitely better than Avastin for me. The cost to the NHS doesn’t concern me though. Hopefully Eyelea and will become cheaper with time. And the pharmaceutical company stops holding the NHS to ransom on the unnecessary cost of T3.

I’m a fan of the slow & cautious approach as I’ve had adverse reactions to adding too much too soon. I followed forum advice to cut back on T4 for a week prior to adding T3. I’m glad I took things slowly as I didn’t need the high dosage my endo prescribed. Best wishes to you!

Catseyes235 profile image
Catseyes235 in reply to Buddy195

Strangely I did the same. Slightly lowering T4 and then adding just 1x 5mcg for a few days then a tiny bit less T4 before adding in the other 5mcg. As it’s known we don’t remember everything docs tell us you’d think I, or he, would have taken notes not rely on my unreliable memory . All seems okay so far thanks.

A rare thing, a medic that listens!😁

Catseyes235 profile image
Catseyes235 in reply to klr31

Well I don’t know ..my doctor and some others at the practice are good and were happy for me to continue on T4 with low TSH as long as I felt ok. haven’t seen an endo in 40 years but have to remember that this site rarely represents good news stories! When I was seeing endos at the beginning of my diagnosis (10 years late) the endo I saw would have just been born ... I wonder if his nationality had an influence as T3 seems easier to source overseas? Who knows? 🤔😀

Do GP’s in England prescribe T3, because my doctor has always given me Levothyroxine. My TSH came back 0.01 and they think I need to reduce dosage but I don’t feel any hyper symptoms!

Catseyes235 profile image
Catseyes235 in reply to 2hope

GPs don’t. It’s expensive and they have budgets and are advised by NICE guidelines. I was surprised to get an appointment with endo within 2 weeks (I had to reread the year!) So yes English endos prescribe T3.

Interesting that Boots (US company). has taken over hospital pharmacy and I have to only get my repeat prescriptions for T3 from there.

Thanks for your reply. Now I understand why my medication has never been changed , except increase the dose and reduce the dose !

I’n glad you got the appointment with an endo, I hope it works out well for you.

Catseyes235 profile image
Catseyes235 in reply to 2hope

Thanks ..and good luck to you too. It’s a journey ... I hate that expression ..we’re all on a journey but this one feels endless at times! Ah well as my mother would say “worse things happen at sea!”

Well said :)

Catseyes235 profile image
Catseyes235 in reply to 2hope

Cheers! 😀

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