Started T3 Trial feeling rough advice again please

[Otto11]

Hi

I hope you all had a good Xmas. I started a trial of T3 on 9th December & have been following advice from several members here mostly slowdragon to start slowly. I felt a bit better than my usual exhaustion until Boxing day & have been totally wiped out since. I'm currently taking 5mcgs in the morning & 2.5mcg in the afternoon. I'm having to remove the powder from the 10mcg capsules & mix with a tiny bit of water.

I have reduced my Levo from 125mg/100mcg & am now taking 100mcg/75mgs daily. Will reduce to 75mcg daily tomorrow. My last thyroid bloods were done in October which were

TSH 0.7 (02.7-4.2) T3 3.3 (3.1-6.8) T4 20 ( 11-22)

My first question is how do I know whether my exhaustion is caused because I have too much Levo now or by the T3 ? Is it just a question of trying different doses? I'm expecting to add in another 2.5mcg in the afternoon next week.

My next question is I'm due a blood test on 7th Jan then a follow up call with the nurse who thinks I am taking 10mcg morning & afternoon. What do I tell her? My bloods will not show the correct results for the dose she thinks I am taking so do I tell her I'm only taking half her prescribed dose?

Thanks in advance

[Buddy195 Administrator]

I reduced my Levo in the week before adding Lio, as you have. I only added 5mcg Lio until well tolerated. I’m more of a tortoise than a hare when making changes & always feel worse before feeling better. Low and slow is my mantra now…. This also makes sure I don’t miss my ‘sweet spot’ medication wise, where I feel well.

[Pcoetzer in reply to Buddy195]

hi there

Please see this article and website . I hope it helps

stopthethyroidmadness.com/o...

[Otto11 in reply to Pcoetzer]

Thanks will do.

[Otto11 in reply to Buddy195]

Thanks. I'm a tortoise too tbh but also have the instructions from the nurse so afraid she may stop me having it. I'm feeling so unwell the last week. Totally wiped out.

[TiggerMe]

I wouldn't reduce your T4 any further until after your blood test on the 7th else you won't know where you are... chances are you have already reduced by enough (possibly too much) as adding T3 often lowers fT4 levels... I needed to put my T4 dose back up to pre T3 dose in the end else I felt awful, I need to keep fT4 over 50% or feel tragic even with the T3 benefits

You've added in a reasonable amount of T3 quite rapidly so you might have been riding an unsustainable wave until things have settled in... it tends to catch up with us when we suddenly feel a bit better and then over do it 🙃 might mean you are ready to add another little increase in T3

As for what to tell the nurse... I'd probably keep quiet about how much you are taking (she will only be interested in taking a sample) as it will give you wiggle room to continue to tinker with your dose... but do make a note for your own records

Remember testing day leave 24hours after last dose of T4 and 8-12 after last T3 🤗

[Otto11 in reply to TiggerMe]

Thanks so much. I'm not really trying to do things too quickly just aware that the blood test wont match with what the nurse thinks I'm taking so then she may change the prescription etc. Also scared they may stop the T3 if I don't comply. I'm going to go back to 100mcg Thyroxine tonight for a week or so although I know she wont be happy as she wanted me to take 50mcg!! I have taken my first dose of 5mcg this afternoon to see if that helps too. (currently 5mcg am & 2.5mcg pm) I have kept a diary already as having Epilepsy & chronic fatigue my memory is shocking. I must remember the protocol for my blood test thank you.

[TiggerMe in reply to Otto11]

Tricky as she obviously hasn't got a clue and chances are they will only test TSH which will probably be low which might trigger a fT4 result which will be squiffy if you adjust your T4 dose again now...

I we're you I'd stick with the T4 regime you started on the 9th and just give your T3 increase chance to settle between now and the blood test, if you change both things you will be totally confused as to what to do next as T4 changes take at least 6 weeks to settle

[SlowDragon Administrator]

Suggest you increase T3 to 5mcg tomorrow afternoon

You might not have needed to reduce levothyroxine that much

[Otto11 in reply to SlowDragon]

Thanks have taken 5mcg this afternoon & keeping my fingers crossed.

[DippyDame]

I would initially have left the levo dose at 100mcg daily

Adding T3 will slightly lower FT4 and TSH anyway.

It basically depends on how your system responds to the T3.....trial and error!

Your FT3 was miserably low in October so you will likely need quite a bit of T3 to build up your level.

I'm not a fan of splitting T3...I need high dose ( 100mcg) T3-only in a single dose to function...but we are all different.

I would have added 5mcg T3 to the 100mcg levo waited for 2 weeks to see how that felt then added a further 5mcg....dose 100mcgT4 + 10mcg T3.

Held that for 2 weeks, then if no signs of overmedication then added 5mcg in the evening.

This fulfills the splitting protocol!

I doubt you'd have missed your sweet spot by this stage given that low starting FT3 level

If things are improving but not quite right after a further 2 weeks increase evening dose to 10mcg.

Hold that dosage for 6 weeks then test.

The results will point the way forward

After the test you may need to reduce the levo dose to 75mcg....time will tell. And you may need more T3

It is unlikely to be a smooth journey so be patient

I suspect you crashed because your body was responding to the T3 but finding the dose inadequate....and asking for more via increasing symptoms. Been there!

I've found it best to be honest with medics about any changes I've made ( I self medicate but keep them informed)

I would explain to the nurse that you were anxious about starting T3 so reduced the dose to slowly introduce it to your system but realise you need more so intend to now increase to her suggestion

Ask to delay the test until you have been on a steady dose for 6 weeks....any other timing will produce an unreliable result.

You are making too many changes too quickly/ close together

Testing on 7 Jan will be a waste of time!

You now need to establish a set of reliable results after 6 weeks on a steady dose so that you can then move forward with some confidence

Sorry, it's a bit of a rant it's based on my own experience but you may wish to experiment with another protocol

Unfortunately there is no quick fix...but with the correct dose there is a fix.

I found being patient very hard but it pays off.

Good luck

[Otto11 in reply to DippyDame]

Thank you very much. I do agree with everything you are saying so will ring Endocrine & leave a message to ask the nurse if she wants to delay the blood test as I totally agree the test wont be accurate at all. I have been given the dated form already though so a bit of a problem there too. I'm not looking for a quick fix just trying to follow both the groups advice & knowing what to say to the nurse as well. If I was self medicating it would be a different matter. I've been so unwell for soooo long when I saw the Endocrinologist in 2022 he said I have been undermedicated for years. He had all my TSH results on a graph for past 10 years! My T3 at that time was below range but hadn't been tested previously. He then retired saying I was going in the right direction as my T3 had increased to 3.7 from 3.2!! I'm feeling currently exhausted & very spaced out. You definitely weren't ranting I really appreciate you taking the time to help.

[McPammy]

When I started adding in T3 to my daily routine I didn’t lower my levo T4 dose. Did you have results of how high your T4 was before you reduced it. Mine was just under the highest point in the range and the Dr felt no need to reduce. I added 5mcg T3 twice a day 8hrs apart. That regimen has worked for me now for a few years. I think maybe you’ve dropped your T4 dose too much. But hard to say without your blood level results. I wouldn’t drop it any more until you get your next results. You may have to increase it even and increase your T3 dose also. It can be for some a bit of a roller coaster initially until you find your right levels and importantly feel energised and well. Try and keep your TSH in range along side your T4 and T3 levels as the aim is to mimic a healthy persons thyroid levels. TSH about 1.00 and optimal T4 and T3 to reach that TSH level.

[Otto11 in reply to McPammy]

Thank you. All my blood levels are in previous posts. My T4 has always been high since I saw the first Endocrinologist in May 2022.. It was 18 then & T3 3.2 September 2022 it was 23.0 & T3 3.4 this is when he discharged me. I got my GP to test in November 2022 when T4 was 22 & T3 3.7 All of 2023 my T4 has been 20 or 21 or even 22 ( I have been doing private tests) then with the help of everyone on this group I learnt about non conversion & asked for a re referral. That endocrinologist had retired but I saw a new Registrar this time who arranged the trial of T3.

[SarahJane1471]

I was always advised on here to change ONE thing at a time. The blood test results will be pointless at this time.

I agree with all the above ☝️

[suedasher]

Definitely let the nurse know the dose you are taking and simply explain that you wanted to go slowly.

[Otto11 in reply to suedasher]

Thanks. Yes that is what I will do & tell her I'm currently on half the dose (5mgs instead of the 10mcgs) she prescribed. I'm such a lightweight with everything. Hoping she wont be too annoyed.

[FishyLR]

Hi Otto11, How much levothyroxine were you taking before you went on trial of liothyronine?

Have you only ever had one brand of levo?

When you were on levo only, wht symptoms were you having?

[Otto11 in reply to FishyLR]

Hi It's a long complicated history over the past 10 years with every hypo symptom going but mainly exhaustion & brain fog & have been pretty much housebound in bed or on the sofa since 2021. I had been on 75mcg Levo for 20 plus years. I got a referral only by default after being admitted to hospital in Feb 22 with another problem. I took in my blood results for the past 3 years when all my vitamins had halved then halved again. The endo I saw in may 22 increased my dose of Levo twice to 125mcs saying I had been under medicated for years, he mentioned I may not be converting & the possibility of a T3 trial but then discharged me. Nothing improved any of my symptoms so I started looking into T4 to T3 non conversion myself. I got a rereferral last October & was offered a trial by a different Endo immediately. I was feeling a bit brighter initially then have slumped again & not sure if I need to lower T4 or increase T3. Its all so new to me. All previous blood tests etc in previous posts.

[FishyLR]

Thanks for your reply and Happy New Year to you and your family. What I can say is that I have had similar experience as yourself, the fatigue, brain fog etc, also being under-medicated for years.

I was also on same dosage of levo, and pleaded with my GP for a referral to go see an endocrinologist with a view to trial of Liothyronine (T3), thankfully the GP/endo agreed to trial me on it, that was June 2023 and have been on both levo/lio since.

I read that your bodyweight should be a contributor of how much meds are needed (although the GP stipulated when I mentioned this, that bodyweight has no contributing factor to determining how much medication a body needs/doesnt need) - personally, I think they use the same formula for everyone, as they don't know!

I was on 100mcg levo which was reduced to 75mcg with addition of T3 (5mcg daily), at first I noticed major difference, more energy, but then I went through a slump, like yourself and decided to make changes on my own to the med amounts, (without informing the GP to start with). As T4 converts to T3, I figured by increasing the T3 slightly/reducing the levo amount slightly that should help, and it did. I went down to 50mcg levo T4/7.5mcg T3 morning and 7.5mcg T3 before bed (daily).

I have absolutely piled on the weight since diagnosed, gained 18kgs (so far), I used be size 10, now Im 14. I based the med amount needed around my weight which is now 81kgs.

So for weight, in my case 81kgs x 1.66 (thats formula) - for me, I needed to be taking 135mcg medication daily (or as near to).

The formula, worked out..

20-25mcgs liothyronine T3 = equivalent to 100mcg levo T4

10 mcg T3 = 50mcg levo T4

5 mcg T3 = 25 mcg levo T4

2.5 mcg T3 = 12.5 mcg levo T4

1.25mcg T3 = 6 mcg levo T4

7.5mcg T3 (taken twice daily)= 25+12.5 = 37.5 x 2 = (equivalent to 75 mcg levo)

+ 50 mcg levo T4 already taking = 125 mcg which Im currently on

Personally, I found my energy returning, no more brain fog, still have muscle aches etc, but my energy feels so much better and I can concentrate now/not always feel so tired, manage to work 8hrs without having that crash (between 1- 2pm daily that I was having).

Its trial/error I think to start with, but my advice would be to reduce your levo to 50mcgs daily and increase your T3 to 15mcgs (7.5×2) daily/work out formula based on your bodyweight and go from there, although we all have the same bodyparts, our bodies dont all function the same, I think GP's forget that part!

Even if we are told our TSH is normal, everything normal, yet we feel like absolute crap, they dont listen, as they dont know everything!

Listen to your own body, how it feels, it may take some time to get the formula right, for me T3 has definitely been my saviour! I wouldnt have been able to function/hold down a full-time job without it, so I am extremely grateful to have had chance to trial T3/and remain permanent on it (combination with levo).

There are so many people out there in the UK who dont know about T3/benefits of, also dont know that with hypothyroidism we need to be taking extra supplements, B12, Vitamin D, Selenium, Magnesium, Zinc etc..we are simply not informed by the NHS/GPs/Endos, that these supplements can help with aches/pains, hair loss etc, we have to find this info out for ourselves, and fight for regaining our health to as "normal" our body can feel on the day!

[FishyLR]

I did inform the GP after 1.5 months being on my own trial of 50mcg T4/7.5mcg T3 morning & 7.5mcg T3 evening (daily), that I had increased my T3/reduced T4, and test results confirmed better readings, so they went with it, I felt better, what could they say to that afterall !?