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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inthedoldrums
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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
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
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
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.
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