Thank you Thyroid UK community because I've bee... - Thyroid UK

Thyroid UK

114,590 members132,957 posts

Thank you Thyroid UK community because I've been given a T3 trial and it's because of your help

Smash49
Smash49

Hello everyone. I wanted to say a big thank you to Thyroid UK and all the lovely helpful folk who have given their time and knowledge responding to my questions because I had a private endo consultation this morning and he's prescribing a 3 month trial of T3 to add to my Levo. I wouldn't have got here but for all the helpful responses to my posts and the information I got from Thyroid UK. I hope she won't mind but I want to say an especially big thank you to Mcpammy cos she passed on the private endos details that she had used and also gave me loads of other brilliant help. I know it's not a done deal that the T3 will rid me of my symptoms but I'm really hoping it will. But even if it doesn't work he said its not the end and he will try something else. It felt so good to be listened to and understood by a doctor. I feel vindicated. I'm not a hypochondriac or neurotic after all and that's official 😄.

40 Replies
oldestnewest

Brilliant news - here's hoping it works for you as well as it does for me :)

Take it low and slow to start with - 1/4 tablet for the first week or two, then add another 1/4 every fortnight x

Smash49
Smash49 in reply to fuchsia-pink

Great advice thank you so much

I think you should post about your dose of T4 and T3 and what your latest results are. The endo you've seen may well be good, but some of them do set their patients up to fail by (for example) lowering Levo too much/not enough when adding T3, prescribing very low doses of T3 rather than "realistic" doses, or suggesting a dosing pattern that is unlikely to work.

What ever you've been prescribed people on here can make suggestions as to how you dose and/or build up to using the dose that you are prescribed.

Smash49
Smash49 in reply to humanbean

He has prescribed 5mcg of T3 3 times a day and reducing levo from 100mcg to 75mcg daily. He dictated the letter he will send to GP whilst still with me and said in it that some endocrinologists do not favour T3 treatment but others do and that he is one of the latter and went on that there have been numerous studies especially on animals which confirm that T3 is proven to improve wellbeing in hypothyroid patients with unresolved symptoms. He also said to me that if this doesn't work he will continue to something different to relieve my symptoms. What that would be I don't know but to be honest I was so full of a mixture of elation, shock and excitement I didn't ask. Hopefully it won't come to that but if it does then I will think about that then. He seemed a really genuine guy and is one of the leading endocrinologists in the country plus he was recommended to me by a lovely lady on this forum who has been and continues to be successfully treated by him. He's giving me details of where and how to source the T3 in Germany with my private script and how much it will cost etc. Definitely money we'll spent on my consultation. That's another thing, I used to think it would cost thousands to go private and that's why I've not done it all these years but it's nowhere near as much as I expected and I'm no Rockerfeller believe me 😊

Smash49
Smash49 in reply to Smash49

Sorry also my bloods are TSH 0.28 range 0.27 - 4.20, free T4 21.7 range 12 - 22, and free T3 3.72, range 3.1-6.8

fuchsia-pink
fuchsia-pink in reply to Smash49

I'd say that's a sensible reduction in levo as you were right at the top of the range before - reduce the levo first, and start the lio a week or so later [if you do two different things together and it doesn't suit, you won't know which thing was "wrong" - and then take one dose of 5 mcg lio to start with and build up to two doses and three doses over time as per my first post: lio is strong, but I don't think you need to split a 5 mcg tablet - mine are 20 mcg so quarters are still 5 mcg x

Smash49
Smash49 in reply to fuchsia-pink

Thanks fuchsia-pink, it's all noted. I too will be quartering a 20mcg tablet to make the dose of 5mcg.

Ohh smash49, I can’t tell you how much this warms my soul, I’m so pleased you have the opportunity. I’m still on the challenging journey of trying to convince my dr and oncologist dept to just TRY the introduction of T3.

I had a total thyroidectomy 2012 and right neck dissection 2014 I’m still constantly fatigued and need to spend much of the afternoon napping.

I know your journey is a trial, but inspiring, thank you.

DippyDame
DippyDame in reply to Smash49

Just re- read this!

"5mcg of T3 3 times a day" =15 mcg15mcg is quite a large starter dose

Or, are you supposed to split a 5mcg tablet into 3

Either way seems odd

Splitting didn't work for me but we are all diferent

5mcg once a day to start with might be kinder to your system

Dustpan
Dustpan in reply to DippyDame

I thought that it was high for a starter too. 15mcg is a lot to begin with.

Smash49
Smash49 in reply to DippyDame

It's 1 quarter of a 5mcg tablet 3 times a day. I think it's wise to take it slow and steady at first. I've waited this long for it that there's no sense in rushing and potentially mucking it up for myself. Thanks for your help

FancyPants54
FancyPants54 in reply to Smash49

Hi. You have contradicted yourself above. In one place you say you will be quartering a 20mcg tablet and taking 1 quarter 3 times a day. Then you say you will be quartering a 5mcg tablet and taking 1 quarter 3 times a day.

Which is it?

iamdevo
iamdevo in reply to Smash49

Delighted you are getting T3. It saved me.

Dustpan
Dustpan in reply to Smash49

I didn’t think you could still buy from Germany due to brexit, I may be wrong.

DippyDame
DippyDame in reply to humanbean

The wise voice of reason.

Well done....good luck going forward!

Fingers crossed for you. I couldn’t get 5mcg tablets from Germany (I didn’t want the hassle of cutting 20mcg tablets and wanted ‘even’ dosing) so had to source from America (expensive). I now get 5mcg tablets on NHS and take 10mcg am with Levothyroxene 75mcg/100mcg (alternate days) and 5mcg in afternoon... I initially started reducing my 100mcg dose of Levo to 75mcg with 5mcg Liothyronine in morning, then 5mcg was added weeks later as a Pm dose, then morning dose increased to 10mcg am with 5mcg pm - here’s to the start of your next journey - I have to admit I haven’t found it plain sailing but I do feel improved 😊

Smash49
Smash49 in reply to Lost_Girl

Thanks for your reply. I think the consensus is to take it slowly which I will do. Best wishes to you

Is there any chance I could have the endo’s details as I would like a private appointment too ?

Smash49
Smash49 in reply to parsnip888

I will private message you later parsnip888. I'm in work today so will forward the details to you in my break

Me to please, I’d really appreciate it.

Niteflite
Niteflite in reply to Smash49

I’d be so grateful if you would also message me. It was lovely reading your post and very happy for you.

I am currently on a trial (2months in) introducing T3 and have reduced my Levo to 75. I was prescribed 10mcg 2 x a day. I started cutting into 2.5 and after a week took 2.5 twice a day for a few days, then 5 + 2.5, and built up monitoring my HR BP and pulse 10 mins before and 3 hrs after. I’m now taking 10 x 2., it’s helping but I’m still not right. Everyone is different but I feel my dose isn’t enough.

I will be doing my own private bloods next week and will be interested to see what my bloods are although I understand bloods can’t show what’s getting into our cells and that’s why monitoring BP, HR & Temp is important.

Good Luck x

Smash49
Smash49 in reply to jamjar67

Hadn't thought about temp, blood pressure etc. Good point, I'm gonna do that thank you for the info

Poniesrfun
Poniesrfun in reply to jamjar67

That’s pretty much how I was able to work up to my current dosing. I found I tolerated the increases early in the day best at first. T3 effect peaks at approximately 2 hours, begins to taper off in 4-6 hours and achieves “steady state” in 2-1/2 to 3-1/2 days (you can Google liothyronine prescribing information for these numbers). That can help your dose timing (every 4-6 hours) and dose increases (at least 3-4 days apart). It’s also helpful to know if you rush things and have some uncomfortable side effects they will go away quickly and you can back down to the previous dose or timing for a few days. Note: much of this I got from Paul Robinson’s T3 book.

jamjar67
jamjar67 in reply to Poniesrfun

Thanks for that.... I do feel I need an increase in the morning, that’s when I feel worst, but generally better towards the end of the day... I’m just hoping my Endo will agree in the New Year 🤞 Will see what my bloods show 🥴

Smash49
Smash49 in reply to Poniesrfun

Thanks Poniesrfun. Some very useful info there which I am noting. It's so good to hear about other people's experiences so I will know what I may experience and not have to worry about it if these things do happen. Best wishes to you

I am so very very pleased for you. Follow your new private only Endocrinologist’s advise. He calculates it all out snd knows the doses you require. We are all different as to how much T4 or T3 medication we need to get to our own individual correct levels. Some need much more than others.

5mcg of T3 three times as day is not too high. Some might say it’s too low. T3 lasts about 8hrs then tappers off. It has a half life of 2/3 days also. All you are doing by taking it 3 times a day is topping up your level. Some people take it once a day but if you are confirmed as a poor converter you need T3 more often throughout the day as you are poorly converting T4 Levothyroxine. Hope that makes sense.

I’m so please you went to see him and got the trial. Fingers crossed the prescription will arrive very soon and you’ll get your delivery from Germany before Christmas! What a brilliant Christmas present 🎁 xx

Bring on 2021!!

I’m humbled that you mention that I’ve helped. You have no idea how much that pleases me that you are making progress.

Smash49
Smash49 in reply to McPammy

Your help will never be forgotten McPammy thank you

McPammy
McPammy in reply to Smash49

I want you to be as well as me ❤️

Delighted for you ! It really is worth persevering, and for anyone else who is having a hard time gaining access to T3 through their GP / Endocrinologist, it is great to hear a success story. Keep persevering - it might take a request for a second opinion, but it is worth it.

Smash49
Smash49 in reply to BumbleyM

Thank you for your lovely response. Take care

It's great to hear you're going to try a trial of t3. I've been on it for 3 years now, although my symptoms are not all gone I do feel better for it! I'm on 75mcg of levothyroxine and 5mcg of t3 in the morning and 3pm. My dose hasn't changed since I began. Please could you private message me the name of your endocrinologist and where you get your t3 from in Germany.

Wishing you all the best :)

Hi Smash 49, I'm new here. That's wonderful to read your news. Hope it all works out. I'm plucking up courage to go to my GP. Honestly, I think it will be a poor experience (I'm in North Wales.) I feel I'm not converting T4 to T3 any more.

I guess I'll be back on here for help.

All the best to you.

Smash49
Smash49 in reply to Butchinska

Hi there. Thanks Butchinska. I live in the north west and I too started out with my GP and went from there. I hope you have more luck with the NHS than me. Some people do get success with the NHS as I've read on this forum. And if you don't then you just look elsewhere, but you have to try the NHS first and go down the usual route. You'll get there in the end I'm sure. I was very afraid when I first started but once you've taken the plunge you will be fine and there's the support of this forum to help you along. Just keep believing in yourself. Good luck to you and best wishes in your journey to health

I am pleased you have succeeded in getting a trial albeit via a private endo, hopefully he can get you onto his NHS list very soon as the cost of T3 from Germany will no doubt go up when we are not longer in the EU.I too think 15mcg a day is a big starter dose, or is it 3.75mcg which seems a better starter dose.

I see however McPammy who has been your mentor has said it’s not too high, if fact some would say too low. As we all have varying causes of hypothyroidism I expect that makes a difference. My thyroid was destroyed in the early 1950s and I expect you have a different history. My knowledge of the impact of T3 is limited to initially being prescribed NDT from decades ago. When I decided to self source NDT to get well again after a bad few years on levo I had to take that quite steady. I would love to know the cause of your hypothyroidism and why a total 15mcg a day is good starter does. It is by learning of others experiences we feel able to offer suggestions to forum members. Good luck . Hope it all goes well.

Smash49
Smash49 in reply to Miffie

Thanks for posting Miffie. It's interesting to hear from someone who did start out on NDT when Levo hadn't been invented to ruin our lives? Did you immediately feel bad when you had to switch to Levo in the 70's?. I have Hashimotos since about 13 years ago now. I tried to get help at the start with the NHS without success but I didn't know about Thyroid UK until a couple of years ago and trying to work full time, bring up the family and deal with my symptoms meant I just didn't have the fight or the knowledge to pursue for help and ended with me having a breakdown 3 years ago so I have, when I felt mentally strong enough 12 months ago I started researching, asking questions on here, and restarted the slog down NHS alley to get T3 without success. But all the great people on here, in the Liverpool group and my family have given me the tools and strength to get there in the end. I don't think this endo does any NHS work so I will probably be private from here on with the T3 which is fine by me. I wish you well and thank you again for responding

TrishG67
TrishG67 in reply to Smash49

Hi Smash49 so delighted to hear you finally got T3. 🤞hoping this is the beginning of feeling well again for you. Just persevere as it will take time. I suffered for 21 years on Levo alone & only this year started on NDT after paying to see private endo. I am still on my journey with lots of symptoms, but already feel a bit more normal. This forum is a godsend with everybody's experiences and advice as guidance. Cant believe I only discovered it this summer. So happy to hear how resilient you have become and got yourself back fighting for your health, well done! it's not easy when some people, including your GP, think it's all in your head when you are suffering so much. Can you PM me please with details of the Liverpool group I dont know about this, good luck x

It must’ve felt really good to have a doctor listen to you, good luck with your new meds. Hope it goes well for you. Debbie

Smash49
Smash49 in reply to Mistydeb01

Thanks Mistybeb01 it certainly was. Maybe when my GP gets his letter they might give me the courtesy of listening to me for a change. I'm not holding my breath about that though 🙄. Best wishes to you

You may also like...