T3 only dosing & timing advice

[Sunshine388]

Hi, I’m looking for any success stories of t3 only dosing? Also advice on splitting the dose or have seen some people taking it all in one go? Any tips on things husband can try or consider to try and help improve symptoms? (will discuss with private endo first)

Husband is taking t3 only 85mcg total dose. Split 4 times over the day. (Trialling CT3M so taking a dose at 3am). (Trying to fine tune dose- keep seeing snippets of him doing a bit better. 60mcg was way too low, 100mcg way too high. 85mcg seemed too high but dropping to 82.5mcg caused massive increase in fatigue)

Bit of background: he has hashimotos hypothyroidism for 18 years. Male, aged 42. Managed ok on Levo t4 (150mcg) until covid in March 2020 and has been struggling with fatigue, brain fog etc ever since. Covid definitely triggered or messed up something thyroid related for him, kept getting strange blood results (high T4 and high TSH at times) 🙁 Diagnosed with CFS/long covid 2022 but think this was mainly NHS didn’t have an answer. Bloods checked regularly, all ok except vitamin D which is now ok and he takes supplements for. Started seeing private endo October 2023. Rt3 tested and crazy high. Trialled change to NDT armour, slight improvement but still symptoms. Now t3 only, seen some improvements - endo wants to continue down this route for now. Getting dosing right seems extremely difficult though! Bit of a rollercoaster with it all. (Will work out how to put this in bio to avoid typing it all out again!). Cortisol has been tested, DHEA tested and all ok too, clearly seen some fluctuations in cortisol linked to changes in thyroid meds but from what I’ve read this is to be expected.

Thanks in advance to anyone who has taken the time to read and can offer any advice.

[SlowDragon Administrator]

what are his most recent vitamin D, folate, ferritin and B12 results

What vitamin supplements is he taking

As he has Hashimoto’s is he on strictly gluten free and/or dairy free diet

[Sunshine388 in reply to SlowDragon]

Vitamin D- 122.4 (50-200)

Vitamin B12 - 412 (145-569)

Folate 35.8

Ferritin 230 (30-400)

He takes 1000 units vitamin D daily, vitamin D goes low without it. He did take folic acid as folate was low initially but fine now.

He’s never tried gluten/dairy free. His view is that so much has already reduced in his life, that he is reluctant to restrict his diet as this is one of the few unchanged things he can enjoy. I’ve also not found much evidence supporting this so haven’t encouraged it with him. Has it helped you? No GP/endo has ever suggested it including private one currently but could discuss with her at next appointment if you think it is worth trying.

[SlowDragon Administrator in reply to Sunshine388]

Personally yes both gluten free and dairy free have been enormously beneficial. More on my profile

Many members find similar

Post discussing gluten

healthunlocked.com/thyroidu...

Recent research in China into food intolerances with Hashimoto’s

healthunlocked.com/thyroidu...

More interesting Chinese research on Hashimoto’s and leaky gut

nature.com/articles/s41598-...

[Sunshine388 in reply to SlowDragon]

Thank you for those links, looks like it has helped quite a few people. Think he'll trial gluten free for a few weeks and see how he feels.

[Mollyandbear]

Hi, just read your post. Sounds very similar to my story. Was fine on t4, but Covid turned it all upside down and also has some CFS. Now trying t4/t3 treatment but yes, it’s a bumpy ride. You have done well to find an endocrinologist just working with t3. ( you must not live in the uk then) I noticed you mentioned CT3M, have you worked with a paul Robinson?

Did you test both free and total cortisol?

[Sunshine388 in reply to Mollyandbear]

I feel for you, it’s so horrible and massively affected quality of life for him 😞 hope the t3/t4 combo works for you.

We are UK! Experience of NHS endocrinologists is poor. So currently paying private- got a list from thyroid uk and researched each one a bit.

The one we’ve found seems good and willing to trial most things. That said, he’s not fixed yet after 12 months of seeing her but thyroid stuff does take time. I’m trying to remain hopeful.

It was the private endo that suggested the CT3M method. No direct contact with Paul Robinson but trying to read his book. Not going to lie though it’s hard going and a bit too close to home at times.

I get confused with cortisol tbh. Serum cortisol was tested by GP. Saliva cortisol tested privately- 4 samples over 24 hours.

[Mollyandbear in reply to Sunshine388]

Yes, cortisol and adrenal function is a very complicated area and I also get confused with. What was your husband’s serum level out of curiosity?

I sympathise with you both enormously. His symptoms and journey shadow mine over the last four/five years. It’s been a crazy difficult time and can’t help but have an enormous affect on the family too. He’s lucky to have you as involved as you are.

I am working with a very experienced private Endo in London, but he is firmly in the camp of trying to fix me with levothyroxine only. So, we are at odds over best treatment strategy. But at least he is checking some markers for me for now.

Are you allowed to pass on the Endo you are using? Would be comforting to have a back up Endocrinologist that would consider working with T3 for the future, rather than sailing solo all the time.

Getting the dosing right is very hard. What were his symptoms when he took 100mcg? How quickly is he titrating up?

Sorry can’t really answer any of your questions.

[Sunshine388 in reply to Mollyandbear]

It's definitely not been an easy few years. I've private messaged you her details.

She seems very helpful and willing to try various things, but getting the dosing right is proving difficult. Think we're realising that's the case with T3 only, so possibly why it's only recommended as last resort option.

Symptoms on 100mcg were tired but on edge, aching muscles. similar to when he's been overmedicated/hyper and resting HR went up. But he also had dizzy episodes, felt spaced out and some really low blood pressures in the morning, Also had salt cravings. We think maybe the higher dose put too much stress on his adrenals. (Not certain on this though).

No set thing for titrating up. In 15 months he's switched from levo, to armour, to t3 only so dosing recommendations have varied. Trying to give any dose changes 4-6 weeks but sometimes seen a response much sooner. He seems to notice response to decreasing dose much quicker than increasing. Had been going up in 20/10mcg increments but recently just the 2.5mcg change caused quite a difference.

Sorry - don't feel like we have any answers to help. Feel like he is just trialling various options in the hope something will be the answer!

[simonculley67 in reply to Sunshine388]

Hello Sunshine 388

I'm really sorry I cannot shed any light on your situation As Im he same boat.I would love to know the Endo that you work with who tries T3.Would you forward their name please.Best of luck in your conquest for health.

Simon

[Sunshine388 in reply to simonculley67]

Seems a lot of people are similar. So sad and frustrating that there is such a lack of research in thyroid treatment options. I've sent you her details in a private message.

[Babette]

I'm only on 35 mcg of T3 a day but (generally) take 15 mcg when I wake up, 10 mcg an hour before lunch, and 10 mcg before I go to bed. I know it's not nicely spaced out but working around meals as I was told to only have water for an hour before and after taking them. If I forget the pre-lunch one, I'll take it in the afternoon.

Taking 35 mcg in one go make me feel over-medicated.

I hope your husband feels better soon.

[Sunshine388 in reply to Babette]

Thanks for this. Interesting to take a dose before bed - he was taking it earlier in the day as initially endo said it can effect sleep, but she did mention some people do take it before bed.

We're convinced taking it all in 1 go would make him feel unwell too to be honest.

It seems very much trial and error and different options suit different individuals. Which doesn't make it easy working out what will be best for him!

[Susieibbo301]

persevere. It takes time for T3 to balance. What private cortisol test did you do?

[Sunshine388 in reply to Susieibbo301]

Thanks. I think this is the thing, everything takes a while with thyroid medications.

It was saliva cortisol taken at 4 different times over a 24 hours. Not sure which lab it was. Cortisol in October 2023 were all high. Rechecked in Oct 2024 and only 1 out of 4 was slightly above normal range, rest normal. I feel like I've educated myself ok on thyroid knowledge but not got my head around cortisol/adrenals yet.

[Jax49]

I was diagnosed by a private doctor specialising in thyroid as being a poor T4/3 converter in October 2023 and given a very low dose of Armour NDT. I have had blood tests every 6-8 weeks since and increased T3 medication each time. I am still not ‘optimal’ (Nov 24) though nearly there i think. I feel so much better since starting Armour.

I take half dose around 4 am when I naturally seem to stir but go back to sleep immediately, and the other half around 4pm. I’m currently taking 2.5grains. So it is a slow process.

Good luck & hope you both have a happy & heathy 2025.

[Brightness14 in reply to Jax49]

T3 T3 T3

[Sunshine388 in reply to Jax49]

Thanks for your reply. I think maybe combining some of his doses may be worth a try so will discuss with endocrinologist. All in 1 go seems a lot, but wonder if 2 doses might work.

Hope you find your optimal dose and get back to full health soon.

[Judithdalston]

I did try T3 alone c.2018 as have fibromyalgia ( following Dr.Lowe’s protocol, as well as type 3c diabetes and hypothyroidism)…got up to 60 mcg ish but noticed that it was increasing my blood sugars dramatically too, and not helping with fibro.pain so went back to T4 100/T3 25 combo that unfortunately suppresses TSH to 0.02. I have had Long Covid since Spring 2020….seems to have made existing conditions say 25% worse so lots of fatigue, pain, increased blood sugar, but my main new symptoms were high BP and HR, which are still there despite 5 hypertensive drugs. My high HR in fact eventually created the most interest with my GP as he insisted it was ‘overmedication on Levothyroxine’ and wanted me to have the opinion of an endo….i refused to pay for my former private one to do this as he was the one who was happy with his 100/15 combo ( change from Tiromel to Thybon Henning) … so got to see an NHS one of choice. He specialises in hypothyroidism with cardiovascular problems ….and also approved the 100/15 as not causing the high HR. With the new year I might increase my T3 a bit to get it into 60s%, and get back to completing my daily health diary of stats ( BP, HR, BG etc) and how I feel. Generally I don’t think the LC has hit my thyroid much, though Frees are abit low perhaps as so much continuous repair is going on, or just struggling to do things. My HR will soar to 145+ doing a minor domestic job; cooking a sauce has me bent over breathless like I have just completed a 4 min mile. I can’t walk very far as BP plummets to 61/40 ( tested on tilt table), but swim 50 mins 5x a week. No recovery with anything I have tried yet, I wish your husband good luck with his LC and hope increased T3 is his solution to getting better.

[Sunshine388 in reply to Judithdalston]

Thanks for your reply. Sounds like you've had a rough time too. Interesting that T3 effected your blood sugars. Presuming you knew this because you were checking glucose levels for your diabetes? Wonder if it effects blood sugar in people without diabetes too.

It all seems very trial and error. He's also had random spikes in HR and low BP's. It's intermittent though and think it's when he's most undermedicated. Hard to work it all out though.

Impressed you still manage to swim, hope you find something to help you feel well too.

[Judithdalston in reply to Sunshine388]

Yes , LC is a weird ailment seemingly seeking out our weak links so sufferers get a different range of symptoms ….hope it’s the thyroid insuffiency that is the cause of your husband’s so relatively easy ( I wish) to treat!