I have been on T3 only treatment since March this year and am currently dosing 2.5mcg at 09.00, 2.5mcg at 13.00 and 2.5mcg at 20.30 as I am on a slow start after suffering with ME/CFS for 8 years.
I am expecting to increase my dose by another 2.5mcg in about 2 weeks time after test results and would be really grateful to hear all of your experiences regarding timing and dosage and what you felt was optimal for you.
I know we are all different and have find our own path but I am in a real quandary about where to add the extra dose in as I was sort of hoping that I wouldn't need to go above 3 doses per day.
So to hear all of your experiences would be really helpful and might help save me some time and errors. Thank you so much if you take the time.😊
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I have found the bedtime dose most beneficial, it gives deeper sleep and I'm more refreshed the next day. I have taken it twice a day, morning and bedtime or thrice daily, morning, afternoon and bedtime. I choose twice or thrice daily depending on the easiest way to divide the daily dose.
I think it rather depends why you're on T3 monotherapy. Looking through your profile doesn't give us much clue. You say that you're a poor converter but that's not a good reason to cut out T4 completely, your body might still need it.
If you're interested in my experiences, it's all on my profile, but not sure it would be of much use to you because we're entirely different. But, I can't help feeling that the new increase you're planning to start should be added to one of your existing times, not a new time. 2.5 mcg is such a miniscule dose that I can't help wondering if it's actually doing anything - especially with no T4 to back it up. And also taking it 4 times a day would make it very difficult to keep your T3 away from food/supplements/medication - especially necessary when on such small doses.
But, it's all trial and error, and - as you say - we're all different. So, really, you have to find your own way round this. But, if it were me, I'd try adding the increase to either the morning dose, or the evening dose, for a start, and work your way round the possibilities from there.
Oh, thanks for that, that is useful as I was hoping that adding it to one of the other doses would work. I couldn't work out whether to plump for the morning one or the 13.00 because I do get a dip starting around 16.00. As for Levothyroxine, I just can't seem to tolerate it in any form at the moment. It's a long story with it but I have the D102 thing from both sides of the family and had a miserable time with Levo from the outset. I tried again with it a couple of years ago but had the same reactions and my ME/CFS became worse again as a result. I recently tried NDT but that seemed to be much the same for me. The T3 dose is rather weeny but since I had been so low with ME/CFS even too sudden beneficial doses of anything like vitamins could make it worse, but I do notice a slight uptick since increasing to 7.5mcg but that has gone past its peak now, I feel. I will update my profile with more info and thanks again for your help and experience and hope you keep well.😊
Just because you were 'diagnosed' with ME/CFS doesn't mean you actually have it. It's just what doctors 'diagnose' people with when they have no idea what's wrong with them, just to get rid of them. Because it's a 'diagnosis' that nobody can disprove! I think it was far more likely that you were actually suffering from un/under-medicated hypo. But doctors don't understand that because they believe that everyone gets better with levo.
As to the DIO 2 test, that actually only tells you if you're are possibly a poor converter, it doesn't tell you if you really are, so doesn't prove anything.
But, assuming that you were severely hypo and not suffering from ME/CFS, then what the body needs to improve its performance is more thyroid hormone. So, maybe try increasing by 5 mcg this time? See what happens? You might get a pleasant surprise.
Whether or not you should increase the morning dose or evening is not something you can work out. It's something you have to find out by trial and error. There are a lot of misconceptions about T3, people think it gets 'used up' quickly, or only stays in the body for a short time... Neither of these are true. T3 is a hormone, not aspirin, it doesn't get used up. It has a half-life in the blood of 24 hours, but what gets into the cells - which is when it becomes active (it doesn't do anything in the blood) - stays there for about 3 days. So, your afternoon slump is due to not having enough in the system over all, rather than it running out. As your dose gets higher, the slump will disappear. But on T3 mon-therapy, and only increasing by 2.5 mcg at a time, you still have a long way to go before that happens.
I think you may well be right about the ME/CFS as it kicked in when I had so many problems with Levo and my GP told me to stop taking it completely about 8 years ago. I went completely down the pan for at least 2 years and half way down for the rest of the time until this January with another nasty dip that triggered me to have a crack at getting treatment again. You have given me courage to try a 5mcg increase as I do think my body might well cope this time and what a treat it would be if I were able to finish stuff before I got worn out. I also hadn't realised that the T3 stays in the body that long so that is also useful when deciding what time of day to up the dose. Thanks for everything. I do feel quite positive and optimistic now. Take care.😊
It was very, very wrong of your doctor to tell you to stop the levo without suggesting another solution. You cannot just leave people hypo and hope for the best. But it just illustrates how little they know about thyroid and how little they care for patient welfare. I hope you'll never trust this doctor again!
Although the T3 is the one that brings the positive effect, i find that I can only tolerate a significant dose of it if I add T4. In my case, i combine Levo with NDT. I started on NDT and it worked but needed a higher dose which I could not tolerate until I added T4. In the bloodstream, the t4:t3 combination that is released naturally is 14:1… so I infer that you need enough t4 to tolerate t3 well. Hope that helps
It is interesting to know. Thanks for reply. I am still learning. I am sub clinical Hypo for less than one year so i cannot say I have figured it out and what you say encourages me to ‘experiment’ further
Thanks so much for sharing that. I am hoping to be able to tolerate some T4 again in the future but at the moment it just sends every thing haywire even in small doses for me but I understand what you mean. Best wishes to you.
Yes, and then she suggested to an expensive private endocrinologist that I probably had a personality disorder when I asked her for a referral. I was quite devastated when he sent me a copy of the referral as it was a black mark against me before I even started and was untrue. I used to really like and trust her but guess it was just her cultivated 'bedside manner'. I changed practices and am very happy with my new one. I felt like writing to her and explaining the results of her bad decision but my son said not to waste my time as she will just file it under the heading 'Nutter' and I think he is probably right.😆😆😆
That’s an extremely SMALL dose T3 ……more typical to be adding that ALONGSIDE levothyroxine
Should expect you are now very hypothyroid
what vitamin supplements are you taking
When were vitamin levels last tested
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
I agree it's a weeny dose and I am very hypothyroid but I was so low with this ME/CFS since January that any sudden changes to medicine or vitamins could make things worse. I do feel a bit better now I am on 7.5mcg but have peaked, I think, and so have an appointment next Wednesay to request an increase of 2.5mcg again for another 6 weeks or so.
Last test results were 19/06/24 and blood was taken Monday 09.00 and no meds since 21.00 the previous day.
Vit D 125 50-200, Magnesium 0.9 0.7-1, Ferritin 265 13-150,
S Folate 10.50 8.83- 60.8, Active B12 >150 37.5-150,
TSH 10.7 0.27-4.20, Free T4 6.4 12.0=22.0, Free T3 4.2 3.1-6.8, T4 total 49.4 66-181,
I take D3 4000 per day & K2, at the moment, and am looking to get a B complex as I seem to be well up on B12. The folate is within range but is that a bit low? I have some methyfolate in the cupboard and could see how I get on with that but might have to go sublingual due to tummy issues. Ferritin seems high and I don't know if this is significant?
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
And have you had CRP tested for inflammation
High CRP will frequently raise ferritin
Yes increase T3 to 3 x 2.5mcg
Retest in 6 weeks
With below range Ft4…..perhaps then look at adding 50mcg levothyroxine …..or even 25mcg initially
Thanks for your reply. It is much appreciated. I am 71 yrs old. My CRP is 3.55 range <5. It looks like my ferritin is in range for the new charts. I cannot tolerate Levothyroxine at the moment but hope maybe in the future when I get on a more even keel. Best wishes.
The aim is to get the T3 into the nuclei of the cells where it attaches toT3 receptors and becomes active.....until this happens T3 is inactive
7.5mcg is a small dose and your body may also be struggling to get the T3 into the cells....particularly in 2.5mcg doses.
To overcome this (and this is clearly a very basic non technical explanation!) we need to take a dose big enough to act as a "battering ram" against the cell walls so that enough of the dose pushes through the cell walls to the nuclei.
It's not an easy process to judge which is why a T3-only dose is referred to as "the last resort". Blood tests are no longer a guide for dosing, there are no tests to measure cellular T3 ( except post mortem!). That guide becomes signs and symptoms. Listening to your body is vital and reaching your therapeutic dose is, as I said above, a case of trial and error...
....but with knowledge and time it can make a huge difference
Some people may be successful with splitting the dose, after a very long time I discovered I need a single dose.
i would start by asking for a trial on 10mcg ( they accept the idea of a trial because somehow it leaves them holding the reins). Take that as 2 doses of 5mcg and see how that works....for a start. You need to work one slow step at a time
You are clearly undermedicated and need more replacement hormone but whether your endo ķnows enough about T3 to achieve this is another question...you need to learn and be in control as you increase your dose.
The CFS/ ME diagnoses are syndromes( collections of unexplained symptoms) they are not diseases as such....and are very possibly red herrings. Been there, got the T-shirt and done years of suffering at the hands of medics who were flying by the seat of their pants. Arriving here possibly saved my life!
You have room to increase your dose....T3 is no more dangerous than any other medication if used correctly for the individual. It is surrounded by scaremongering tales of heart, bone and other problems....science proves this is not true. My experience, and that of others, has also proved this.
We need the amount of T3 that our body needs....not a mcg more! Most people don't need to take it at all but some of us, depending on how the body processes it, need a lot.
You sit in there somewhere and you won't find out where until you feel confident enough to titrate your dose according to how you feel....not according to what works for other people or what a doctor sees on their computer screen!!
It might help to read this ebook available on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton
Thank you so much for that information. It is interesting to find out that there is that aspect to it, also. I have found though, that I have had an improvement even on the 2.5mcg thrice daily so hopefully I might not be resistant. I will increase the AM dose to 5mcg and see what happens. I will have a look at the book as I have Amazon Prime.
Again thank you so much, you are a wealth of information and I hope you keep well.😊
I suggest you look at Paul Robinsons three books which are available on Amazon. The Thyroid Patients Manual, Recovering with T3 and The CT3M Handbook. Very helpful when increasing T3 and understanding signs and symptoms.
I am T3 only and on 75mcg daily split into 3 doses am early, 11 am and 3pm. You have to work it out.
Hi, thanks for that. I did read a lot of Paul Robeson when I was struggling so badly with Levothyroxine and thought well of him. I did try his suggestion of dosing during the night but that part did not work for me because basically my adrenals were knackered. Can I ask why you do not take an evening dose. Did you try or did it give you a bad reaction?
I did start with a very late evening dose and think it did keep me awake . I am now at 20.30 each evening which gives me a bit of recovery from my day without affecting my sleep too much. 8 years ago, when I first got ME/CFS, my cortisol was very, very low and it has taken this long to recover but recovered we have 😀 and now even a little on the high side in the morning😀but thanks for thinking of it as it is very relevant too. All my best wishes to you.
Hi, and what a nightmare for you. I was diagnosed with ME/CFS in 2006, and had already been on Levo since a subtotal thyroidectomy in the 80s! I can say from my experience that ME/CFS is quite different to having hypothyroidism symptoms. Subtle, but distinct. But the two are inextricably entwined. ME/CFS complicates everything since it creates a profound sensitivity to meds. So 2.5mcg three times a day may well be a reasonable starting point.I came on to this site about 15 years or so ago and found it extremely helpful. But I needed to battle with doctors and endocrinologists for many years, trying to calibrate dosing, Levo or NDT and t3, along with symptoms that stopped being stable on levo when I succumbed to ME/CFS.
Over many years it became exhausting, demoralising and often defeating. What I found to be the most incredible relief, emotionally, intellectually and symptomatically, was finding, in the end, an intelligent, highly experienced, and knowledgeable endocrinologist whose knowledge is holistic, is willing to work with the patient and their symptoms and to fly in the face of the endocrinology cabal and their fundamentalist cleaving to TSH levels. A courageous and gracious woman who took the strain from me, who listened and then acted accordingly. A rare find.
I now take both NDT and Liothyronine, the dosage remaining fairly stable except when under stress, ill, or latterly, reacting badly to an Astra Zeneca Covid jab that was foisted on me just before the barstewards withdrew it.
Her name was given to me on this site, and thank the Universe it was. She's firmly on the side of her patients and committed to doing her best by and for them even to her own detriment. If you would like to know who she is, please feel free to PM me.
Thank you so much for taking the time to share your experience. I find your take on ME/CFS and Hypothyroidism being intertwined but different very interesting and I think you are right. It, also, helps that you understand the sensitivity to meds.
I, also, reacted very badly to the Astra Zenica vaccine and had a major setback of six months with the ME/CFS. I was persuaded to have the Pfizer one but only took it once and am unjabbed ever since so do not know how I will react should I catch the dreaded one.
I have had a little bit of recovery on T3 but do feel that I need to up my dose of T3 a bit now though as I seem to have peaked and going back a bit on the current dose. I will PM you for your referral as she sounds very, very good.
I do hope you continue to keep well and that you keep the dreaded ME/CFS at bay. No one can really understand from the outside how truly devastating an illness it is unless they have actually had it. It is like living life as a shadow and waking every day asking how this can possibly be happening.
To be quite honest, if I were you I think I would push for more than a 2.5mcg increase. Ten mcg is a very low dose and if you can persuade your endo to prescribe a little more, it will give you a bit of room to play with. Say s/he would prescribe an additional 5 mcg, you could then increase the amount by 2.5 mcg at first and wouldnt have to wait for another appointment if you began feeling a little iffy again. You would have some lio in the bank to increase your dosage yourself should you need it. Which, I'm guessing, you probably will. This will move things on a little quicker than constantly having to wait for endo appointments and put you more in the driving seat. Personally, I take all my 62.5 mcg in one go in the morning and find that worked better than splitting the doses. I am not on thyroxin as it stopped working for me after about 15 years. I understand the caution you must feel about introducing lio given the mixed reviews it receives but sometimes you need to formulate a bit of a plan.
Yes I'm with you on this one. Seems like this post hits home to some of us who have to take single dose and can't tolerate t4. We've been in this situation having been diagnosed or almost labelled with cfs/me or fibro and t3 saved us
Wow, you are spot on for me and that is so helpful! My foggy brain had just started mulling the possibilities of asking for 5mcg then increasing at my own speed. That would mean I could get the Thybon 20mcg one and split it in four to use alongside my compounded 2.5mcg ones and thus cost a lot less too. I would be a bit wary to try the all in one go dose at the moment though as the applecart gets tipped so easily at this stage with me.
I really appreciate you answering and hope you keep well.
For one day why not try upping your morning dose from 2.5mcg ( which is tiny) to 7.5mcg and see how you feel after an hour. You might be pleasantly surprised and have normal energy and feel great. You might not need to take your afternoon dose or even later one. If you feel over medicated then just resume to your old regime and add 2.5mcg to morning dose.I speak this from experience having been bedridden from severe chronic fatigue years ago where I couldn't get up from a chair or climb stairs due to battery completely dead.
Through trial and error I realised I could only take one morning dose. I would listen to my body and increase when the fatigue became chronic again, my body would ache all over and I have an awful all over sensation that I just cannot describe but know I have to increase the next day.
I too cannot tolerate t4 nor can I tolerate t3 t4 combination.
I would say once you're on a high enough dose of t3 then you can kiss good but to your ME/CFS diagnosis and start to live a normal life
Thank you so much for that and when I get on a more even keel, I think I will give that a go but my body is so sensitive at the moment. Yesterday, I had a go at adding 2.5mcg to my morning dose but it made me worse and repercussions today also. I felt that I had left it too long before increasing my dose even though it was only 6ish weeks as I peaked at around 4 weeks and then started going down again. I felt I might have tolerated the increase better back at 4 weeks. Is that what you found happened with you? I know the ideal is to leave 6 to 8 weeks before increasing again but maybe at this early stage it could be shorter time if needed? Especially with the ME/CFS thing.
I am going to try the 2.5mcg increase again tomorrow and if not the next day for definite.
Looking forward to your reply and best wishes to you.
I have only ever increased or decreased when my body felt the need. At the start of my t3 journey I might of needed an increase after a couple of weeks then as my dose increased I would go months without the need to increase. We are all individual and our needs differ greatly but listen to your body as you said you perhaps needed to increase at 4 weeks when you were suffering again.I know within an hour after increasing how good I feel and just how lousy i had been. T3 works really quickly for me, I think my body must use it differently to most people. I've never taken it then had to wait days or weeks to feel a difference on that dose. Sadly t3 only is tricky to manage that's why it's classed as the last resort. After 10 years on it I still after adjust my dose which I'm having to do at the moment.
T3 has only ever given me energy but not relieved my other symptoms but I can live with them. You can't function without energy.
That is really helpful. It seems that flexiblity is one of the answers, as you say, particularly since my dose is still so low and ME/CFS is involved. I feel quite a bit better tonight so will try increase again tomorrow AM and hopefully improve again.🤞
Hi, did you increase your morning dose and how did you feel?Looking back at your post you are so hypothyroid with those results and eventually increasing your t3 dose should be all you need. It's shameful that Dr's and endocrinologist will label you with cfs/ me when your blood results scream your undermedicated, they want locking up for that.
Also, it's possible that taking 2/3 doses a day doesn't suit you, like it doesn't for some of us.
I couldn't tolerate taking 2 doses when first started on t3 10 years ago and stopped taking it as I thought it wasn't for me.
1 single dose just happened by default really. I'd not been on any meds and bedridden again. Decided to try again, took 6.25mcg when woke up and within an hour I felt absolutely normal and full of the joys of spring. I was supposed to take another 6.25mcg at 2pm but I didn't feel I needed it so didn't and that's how my single dose of t3 came about.
Also another thing to look out for is if the brand of t3 suits you. I read you are on compound t3 which I've no dealings with. For me I couldn't tolerate Mercury pharma t3 at the start of my journey and opted to but my own uni-pharma which was great. I also couldn't take Tiromel. I'm now prescribed Morningside which I get on with. Just something for you to be aware of.
I would say hennings seems like a brand most tolerate.
Hi Sparkly, I did increase the morning dose to 5mcg and then 5mcg again at 13.00 and cut out the evening one and it does feel that it is working a bit better for me, so I will gradually move it all to morning dosing over the next few weeks and see how that goes.
I just spoke to Roseway Labs on Wednesday as I wanted to move onto the Thybon Henning T3 and split them as most people seem to be OK on them. The doctor there was quite keen, also, for me to try taking 10 mcg in the morning and then topping up with 2.5mcg in the afternoon if I had a dip. So in a few weeks I should manage to achieve that.
I mainly went on compounded T3 because it was easier with such small doses and found it OK although I do get a little fluid retention around the tummy with it. They can do lactose free compounds etc so that is very useful to know.
At least I have a plan now and so far so good. I can't really comment on how I felt today as I didn't sleep a wink last night until 07.30 this morning so suffering from that. I might as well have been utilised to count ballot papers, hahaha.
I will update in a few days though and hopefully it will be good news.
I hope things stay good with you and I do appreciate your sharing what works for you and hope it will work for me as it would be such a boon to not have to plan around three times a day.
Good to hear that you have Roseway to guide you and prescribe. Also should be a lot cheaper I imagine when you move to thybon.I think you'll start noticing the difference now and especially when you move to 10mcg.
Well, a bit of a funny few days really but what I discovered was a bad result from moving the evening dose to go with the 13.00 at the same time as I upped the AM dose. About an hour after the afternoon doses I would start to get noticeably worse again. That happened for a couple of days. So I am backtracking a bit for a few weeks to 5mcg in the morning and 2.5 mcg at 13.00 but no evening one as I'm OK without it. Then when it feels right I will up the morning one to 7.5 mcg but leave the afternoon one at 2.5 mcg.
It seems such a palaver but I was so ill and like you bedridden, when it all started that my adrenal saliva tests were way below normal for quite a while so I want to go gently on them and make sure they are coping before I increase doses each time.
I have just started to notice a little more improvement today so hopefully I'm now on the right track - managed to get from the car into the little Tesco and back today, Whoopee! 😂 Husband driving, of course 😁 and cooked dinner last night 😃
I'm really glad for your advice as it seems to be turning out that what has worked for you could well be the way for me too and I don't think I would ever have thought of doing it that way, myself.
I hope things keep good for you.🤞 and thanks again.
Yes it's all trial and error to what suits you individually. Luckily t3 is fast acting so you know pretty quickly what works for you, unlike t4.You just have to go off how your body feels. You'll know when it's right, just always up by small amounts.
just stumbled across your post and I felt compelled to reply, mainly because I seem to be a bit of a rarity (as far as I can tell anyway!)
I was on levo for years until after a very traumatic time it stopped working for me. Eventually I got to trial T3 and immediate it helped. I started on the standard 5mcg split 3 times daily if I remember correctly. I had to reduce to to crazy headaches then slowly build it up again.
Over the next couple of years of increasing T3 and decreasing levo, I eventually discovered that the levo seems to be “blocking” my body utilising T3, and only when I stopped it complete did I feel well.
I also cannot split doses too much - anything below 20mcg single dose is almost like I haven’t taken any at all - I take 60mcg daily split twice; once at around 7am, and the second around teatime, 6pm.
Everything above is purely my own experience, and I can’t explain it, nor should you assume that you’ll react the same way. As I say, I’m posting because certainly as far as this forum goes, I seem to be quite unusual. I stand corrected if anyone wants to join me, lol!
We are all different though and I found this forum massively helpful in getting to where I am today, good luck
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