Thought on T3/T4 dosing : Hi there I'm just... - Thyroid UK

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Thought on T3/T4 dosing

Hashiboy profile image
67 Replies

Hi there

I'm just reading Antonio Bianco's book - I've know it's been commented on here before. I'm looking for people's views on his suggested T4/T3 dosing . He quotes Wilmar Wiersinga, the clinician-scientist at the University of Amsterdam who suggests dosing should look like this

"If you are taking 100 micrograms of T4 daily, switch to 87.5 micrograms of T4 and 5 micrograms of T3 daily. • If you are taking 150 micrograms of T4 daily, switch to 125 mcg of T4 and 7.5 micrograms of T3 daily. • If you are on a dose of 200 micrograms of T4 daily, switch to 175 micrograms of T4 and 10 micrograms of T3 daily. • Other doses can be easily calculated based on these three references."

I wondered what people thought of those figures and has anyone tried them ?

I currently take 25mcg T4 and 45 T3 (so miles away from the suggested dose above ) and am much better than on T4 only but frequently post about my ups and downs as I'm not quite where I'd like to be yet.

Be really curious to know what people's experience is.

Thanks

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Hashiboy
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67 Replies
Lalatoot profile image
Lalatoot

They don't make sense for me. When I was on 100mcg levo my ft4 was only 60% through range so it was low enough. It didn't need any reduction to add t3. Adding t3 reduced my ft4 lower to 50% through range anyway.I went from 100mcg levo to 100mcg levo plus 7.5mcg t3.

Hashiboy profile image
Hashiboy in reply to Lalatoot

Hi Lalatoot thanks for the reply. I suppose he'd go by TSH. He takes a very conventional approach where if your TSH and T4 were in range on 100mcg levothyroxine he'd advise a levo increase rather than T4. But its interesting g to hear the combo dose you ended up on. I'd like to be on the least T3 I need but the private endo who put me on it seems to have opted for a very T3 heavy combo.

Lalatoot profile image
Lalatoot in reply to Hashiboy

An increase from 100mcg levo was not on the cards for me. On 100mcg levo my TSH was well under range, my ft4 60% and ft3 17%. That's why I got nhs t3.

Easylover profile image
Easylover in reply to Hashiboy

You're blessed.

TiggerMe profile image
TiggerMe in reply to Lalatoot

Much the same for me, it depends rather more where your fT4 is starting from...

with me fT4 was 96% with 100mcg T4, added T3 and this dropped fT4 to 37%

I've now settled on 800mcg per week T4 and 15mcg daily of T3 which puts my fT4 68% and fT3 at 96%

Hashiboy profile image
Hashiboy in reply to TiggerMe

Thanks a million for sharing that  TiggerMe it’s really helpful. I suspect that I might need to head in a similar direction. Really appreciate the real life experience with balancing meds.

Your dosing is pretty much exactly what the formula above suggests I should be on.

jgelliss profile image
jgelliss in reply to Lalatoot

Lalatoot how right you are. When I was finally given T3 after many years of having all sorts of issues. The Endo lowered my T4 when just adding 5mcg T3 . I felt awful. I didn't know which was worse not having T3 or lowering my T4 for the T3? After raising back my T4 dose and adding the T3 I started to come back to myself. My personal experience is that I need enough T4 for my T3 to feel myself.

greygoose profile image
greygoose

He seems to be working on the assumption that hypos function exactly the same as euthyroid people. They don't. Getting thyroid hormone levels back to euthyroid levels won't always work. You need what you need, as we always say. Personnally, I need zero T4 and 75 mcg T3. We have to find out what we need by trial and error. Not by some rigid mathmatical formula.

N_Dobby profile image
N_Dobby in reply to greygoose

Hello Greygoose, how do you split your 75 mcg T3 into doses during the day. Thanks.

greygoose profile image
greygoose in reply to N_Dobby

I don't. I take it all in on go when I get up in the morning. :)

Hashiboy profile image
Hashiboy in reply to greygoose

Yes greygoose he definitely sticks to a very particular approach focused on TSH being in range and T4 as the main part of treatment. There's no discussion of T3 monotherapy. I was curious to hear about people who used his approach as I'm still a bit up and down on my combo.

greygoose profile image
greygoose in reply to Hashiboy

I'm just glad he's not my doctor, that's all!

Zephyrbear profile image
Zephyrbear in reply to greygoose

So am I! I bought his book and read some of his interviews and his main concern still remains this obsession with TSH… anyone who takes T3 will know all too well that it knocks TSH into oblivion so patients like you and me who take either no T4 at all or, in my case, just a nominal 25mcg to go with a high dose of T3 (50mcg/day) would probably give him the collywobbles! Seems to me he’s trying to keep a foot in both camps by expecting TSH in range and advocating giving patients a sop dose of T3 to keep them “happy” and I think, the more he does that, the less impressed we will be.

greygoose profile image
greygoose in reply to Zephyrbear

Obviously zero understanding of how it all works.

Hashiboy profile image
Hashiboy in reply to greygoose

Zephyrbear greygoose it’s a bit confusing cause clearly he does know an awful lot about the science and points out trials of T3 have been badly designed. He also is very supportive of people who don’t recover on T4 monotherapy. So I wonder why he doesn’t explore T3 dosing more and at least discuss the fact that TSH is often well below range for those of us taking it. I’m not slagging him off , I’d be genuinely curious to know why he sees in range TSH as the treatment goal.

radd profile image
radd in reply to Hashiboy

Hashiboy,

To please the establishment.

Small steps a a time otherwise he'll be thrown out like the rest.

Hashiboy profile image
Hashiboy in reply to radd

It looks like that doesn’t it? He seems to be making a strong case to clinicians and doesn’t want to go too far. At least he’s trying, and I would love to have him as a doctor even if we did argue about TSH.

radd profile image
radd in reply to Hashiboy

Hashiboy,

Of course he knows what we know. He is the deiodinase king but it will take years for acceptance of what we/he knows/experiences to be true.

The knowledge that the addition of T3 to T4 is vital for some people is finally filtering through but the infrastructure isn’t in place to support patients medicating. Such as doctors who are expected to take over T3 prescriptions from endos but feel out of their depth as can’t interpret the labs. How can they take responsibility for something they don't understand.

Research and evidence shows a low TSH as a consequence of T3 medication but until the incorrect thinking that TSH is important is discarded, GP’s hands are tied and patients again suffer. Unfortunately it's not just a case of TSH acceptance but a whole reorganisation of the health system.

I would like to see Levo as first choice replacement prescribed by GP's and then clinics set up for patients who failed to regain wellbeing, where defiencies of essential cofactors could be addressed, etc, and then if Levo still failed to work, T3 could be added with clinic specialists who understood TFT labs, slow and low introductions, a possible need for same brand meds, split dosing regimes, adrenal supports, etc, etc . This would be middle care, and finally endo care when a patient still failed to regain well being for further tests such as the stim.

We can dream but I doubt this will happen in my life time if ever.

Hashiboy profile image
Hashiboy in reply to radd

I love your treatment model. I think we’re along way from it. No one, over all the years I have been ill, not even an endo ever advised me on when to take meds, what foods or drinks to avoid or asked for tests of iron or vitamins. I figured all that myself. I know the guidelines advise to investigate other potential causes for symptoms when on T4 mono therapy but for me that only happened because I have a good GP who was willing to do tests I asked for. It would be amazing if they’d fine a complete assessment at the beginning when it was clear T4 wasn’t helping me. It would even be possible to tests for the relevant genetic polymorphism routinely in cases where T4 isn’t effective and then implement a systematic treatment plan including T3 and any supplements or lifestyle changes. We can only dream.

greygoose profile image
greygoose in reply to Hashiboy

Does he see it as a treatment goal? Or is he one of these doctors that believes it's 'dangerous' to have a low TSH? And that he has to keep it in-range at all costs? If he knew that much about 'the science', he would know that it doesn't matter when you're taking T3 because you don't need TSH.

FancyPants54 profile image
FancyPants54 in reply to Zephyrbear

The T3 lowers TSH idea doesn't work in every case. I've been fiddling with T3 added to T4 and T3 only for a long time now. I have never had a low TSH. I've never had a TSH lower than 2. Even taking 60mcg T3.

So some of us seem to not fit into that mould.

jgelliss profile image
jgelliss in reply to greygoose

👏👏👏👏👏

Easylover profile image
Easylover in reply to greygoose

Couldn't have better said!

Regenallotment profile image
Regenallotment

For me it’s probably about right, im not quite there yet.

I went from 125 Levo to 125 + 5 T3 on the advice of a pharmacist prescriber at Roseway labs (no reduction as my FT4 wasn’t higher than 75% through range.

After 12 weeks both FT3 and FT4 were over range

Dropped to 100 + 5 and was even more over range after 12 weeks

Dropped to 75 with 2.5 for 4 weeks, stopped T3 before NHS testing (I was nervous about losing my prescription) and finally FT4 back in range.

Just starting to be slightly symptomatic again so will do blood tests but perhaps adding 2.5mcg per day back in and looking at adrenals next.

Unfortunately with Hashimoto’s we are occasionally dealing with moving goal posts so the ‘finding the perfect dose’ does alter.

Here is a list of things that have affected my dose.

11kg weight gain on 25-75mcg Levo in the early days

10kg weightloss at roughly 1kg a month the last 12 months

Raising ferritin so absorption and conversion have changed plus energy levels for walking cycling less sedentary lifestyle.

Raising B12, D, folate so absorption and energy levels and ability to exercise gently have improved more walking, cycling and yoga.

increased exercise has I am sure impacted in some way

Gut health auto immune diet, no gluten or dairy and using L Glutamine, black seed oil, NAC, s. Boulardii for short protocols following books to help with leaky gut have over time made a difference to gut health which will undoubtedly help absorption.

Stress/anxiety - unavoidable but 12 weeks CBT from the local healthy minds group has meant I understand it better, understand my own reactions, can explain myself to my loved ones, can communicate my feelings, can actually express an opinion rather than people pleasing and being resentful, it’s been valuable and I am sure has reduced the physiological stress of day to day life which impacts autoimmune health.

Next target is adrenal levels understanding those, I’m abroad travelling for a family funeral and don’t have access to my usual adrenal cocktail and I can really feel I am missing it. 🌱

Hashiboy profile image
Hashiboy in reply to Regenallotment

Thanks for that Regenallotment interesting to hear how you approached it. You certainly take more holistic and thorough care of your health than me. I currently take 45mcg T3 and 25 mcg T4 and wanted to shift to a higher proportion of T4 with my endos guidance. Unfortunately he can't see me until November. I got put onv T3 monotherapy very rapidly by a private endo about a year ago who never explored combination therapy. He then promptly left the country. T3 Monotherapy involved too many side effects for me so now I'm working with an NHS consultant and would love to be on the least T3 that's clinically needed.

waveylines profile image
waveylines in reply to Hashiboy

Doctors love formulas!! Thing is we are all different and not standard. There are guidelines that can be useful as a starting point but then it's about adjusting according signs symptoms, how you feel and blood tests every few weeks. The expression that doctoring is as much an art as a science is very true!! The medical profession seems to have forgotten this... Lol

Hashiboy profile image
Hashiboy in reply to waveylines

I’m very lucky waveylines my GP and NHS endo work with a mixture of symptoms and results so I feel that there’s no drive to push a formula in me. I suspect I’m on mostly T3 because of the over enthusiasm of the private endo who put me on it. - kind of wish he’d used a formula 😁

waveylines profile image
waveylines in reply to Hashiboy

Yes its amazing your previous consultant didn't even try a combination. T3, only is usually a last step.... & for those who need it a miracle.Hope you get sorted to what you need.... Sound like your current Endo is more balanced in his/her approach.

TiggerMe profile image
TiggerMe in reply to Hashiboy

I feel like a total zombie if my fT4 is below 50% even with a top end fT3

last tests were conducted on 13 July 2023 at 8 am prior to daily doses of T4 or T3.

TSH 0.04 mlU/L [0.38 – 5.33]

T3 5.3 pmol/L [3.8 – 6]

T4 3.7 pmol/L [7.9 – 14]

Your last results wouldn't work for me... how did you get on when on T4 only are you a bad converter?

I'm a bad converter, DIO2 wonk but still find T4 makes a big difference 🤷‍♀️

Hashiboy profile image
Hashiboy in reply to TiggerMe

I convert well in tests for free T3 when on T4 but I never got better after 7 years T4 only. I also have the dodge genetic polymorphism. Doctor said I probably struggle to convert T4 to T3 at the intercellular level.

TiggerMe profile image
TiggerMe in reply to Hashiboy

Yes, I don't understand what T4 is doing for me but if I lower it I soon know about it!

Have you looked into your cortisol levels? I'm supporting my low levels now and it has made a big difference, finally able to start modest exercising and system seems generally happier 😅

Hashiboy profile image
Hashiboy in reply to TiggerMe

Hi TiggerMe , Hidden has just reminded me to look at my adrenals.

Easylover profile image
Easylover in reply to Hashiboy

Why do you want to be on the least T3 needed?

Hashiboy profile image
Hashiboy in reply to Easylover

Hi there Easylover in general i prefer to take the least dose of anything I need rather than over do it. I rely on T3 but I want to avoid too many doses across the day and too many peaks and troughs and unwanted effects from peaks and troughs. I don’t get on with T3 all in one go. I don’t feel well on T4 only but it does help and has the benefit of being a single dose, long lasting, fairly forgiving if I forget to take it on time. So it’s far less hassle and I’m envious of people who are well on T4 only - so for me, if i could get on with less T3 it would make the business of taking meds easier.

I think one big problem with both doctors and patients is their obsession with doses and ratios. There is no ideal dose or ratio for everyone. If you are a poor converter, it makes sense to take less T4 and more T3. If you are a great converter, it makes sense to take mostly T4. If you are a poor absorber, you need to take more T4 (and T3) because you absorb less. There is a difference between how much hormone you swallow and how much you absorb, just like there is a difference between how much hormone is in your blood and how much is in your cells. It does not matter if you have a lot of T4 in your blood if your body does not convert enough of it to T3 at cellular level.

My personal experience is that it is a mistake to focus on doses and ratios. We are all different and our metabolic needs differ. Many times, I have seen comments like: "You are on a very high dose" when someone takes, say, 200 mcg of levo daily. Well, maybe that is the perfect dose for that person. The relevant questions are: how do you feel on that dose? What are your symptoms? That person may not absorb more than 50 % of each pill, meaning the daily amount of T4 absorbed is around 100 mcg which may be ideal for that very person. Someone else with better absorption may only need 150 mcg of levo daily to achieve the same results. But that does not mean the person on 200 mcg should lower her dose.

Also, many hypothyroid people suffer from other conditions, such as inflammation, insulin resistance, cortisol dysregulation and leptin resistance. All these conditions increase T4 to RT3 conversion. If they are on levo only, they may feel better on NDT or T3+T4, or even less T4 with added T3 (to reduce the amount of RT3 being made). Such persons are unlikely to benefit from 90% T4 and 10% T3, but may need 50% T4 and 50% T3, or even as much as 70% T3. I know that RT3 is a controversial subject and many claim it is irrelevant, but I have seen some articles by US doctors who order RT3 tests, and they have had hypothyroid patients with very high RT3 levels (caused by low calorie diets, adrenal fatigue, inflammation such as IBS, and/or leptin/insulin resistance), and they were unable to lose weight and had a lot of hypothyroid symptoms even on NDT. They felt better and lost weight on lower doses of NDT combined with T3. NDT alone contained too much T4 for their needs as their bodies turned too much of it into RT3. So, instead of taking 3-4 grains of NDT daily, they lowered it to 1-1,5 grains and added T3 to get the same amount of T3 but less T4. Even if RT3 does not block T3 from entering cells, you need a certain balance between RT3 and FT3. Too much RT3 being made at the expense of FT3 is problematic as it lowers metabolism and results in hypothyroid symptoms. I think there is too much drama surrounding RT3. It´s neither harmful nor harmless in itself. Having some RT3 is normal, but a lot of RT3 is a sign of metabolic imbalance. I retain one interesting comment: people on NDT can remain hypothyroid because NDT does not contain enough T3 for their metabolic needs. The answer is not to take more NDT (which will give you mostly T4), but to add T3 to NDT. Of course, one problem with NDT is its fixed T3/T4 ratio which is not optimal for everyone. Even some doctors prescribing NDT claim it contains too much T3 for humans and should be taken with levo. That is not true for everyone. Many hypothyroid people have problems making enough T3 from T4, so they don´t need more T4 but less, and more direct T3. Taking more T4 will only cause them to convert more of it to RT3.

The "ideal amounts" of thyroid hormone (100 mcg of T4 and 10 mcg of T3 daily) may be more or less what a healthy average person produces, because a metabolically healthy person will have no conversion problems, meaning T4 goes where it should. But that reasoning cannot be applied to all hypothyroid people who also struggle with impaired T4 to T3 conversion and/or increased RT3 production.

It makes perfect sense to me that, the more metabolic conditions you have (inflammation, insulin/leptin resistandce etc), the more T3 you need, and levo only is not likely to work, nor is NDT which is mostly T4.

Even though I find Tania Smith´s articles terribly difficult, I have been able to retain one thing: people with healthy thyroid glands produce hormones at vastly different rates and in various amounts. Some people naturally produce more T3 in health; they are unlikely to get symptom-free on levo only after a total thyroidectomy because their bodies need more T3 than they can make from T4 alone. So they will need to add some T3 to restore their natural hormone balance. That makes perfect sense to me. Others are great at converting T4 to T3 and only need a little T3 or no T3 at all. But it is too simplistic to say that, just because a healthy individual produces 100 mcg of T4 and 10 mcg of T3 daily on average, everyone hypo person needs to take that.

Many claim that NDT contains too much T3 for humans. But you cannot generalise like that. Great converters may find that NDT contains too much T3 for them, while poor converters may feel great with higher amounts of T3, and may even find NDT contains too little T3 for them.

As your metabolism is regulated by thyroid hormone activity at cellular level, I cannot understand the obsession with thyroid hormone levels in blood. Too much focus is on figures, not enough focus on actual symptom-relief.

To sum up, it all depends on how well you absorb thyroid hormone (which will determine how much hormone is available to your body), how well you convert T4 to T3, and the RT3/FT3 ratio.

It´s like doctors and patients need to cling to ratios to make sense of a very confusing reality. Sorry if I sound condescending, but I only recently realised (after living with hypothyrodism for more than 20 years) that I will need to take mattes into my own hands if I want to get better. NDT used to work great but no longer does. After desperately trying to make it work by taking supplements, I had to accept the fact that, for some reason, NDT contains too much T4 and too little T3 for my current metabolic needs. I tried to go off NDT and back on levo only and felt terrible. I tried adding T4 to NDT and felt worse. I tried a T4/T3 ratio of 10:1 and 98:2 (Dr. Blanchard´s protocol). Feeling worse when adding levo to NDT told me my body does not want more T4. I tried lowering NDT and felt worse. Only adding T3 to a lower dose of NDT seems to do the trick. I am still in the process of adjusting my dose but, so far, I seem to be on the right track. I have stopped worrying about doses and ratios and go by symptom-relief only. And this happened after feeling great on NDT only for years and being convinced I had found the perfect treatment. Which proves that our metabolic needs may change over time, and that even the perfect treatment may stop working at some point. For me, worrying about doses and ratios at this point would be counterproductive.

arTistapple profile image
arTistapple in reply to

Thank you for that explanation. Although it’s emphasised time after time on the forum about the individuality of dose, you have taken time to explain it in detail, shedding more light on this issue that we often overlook; usually in some sort of desperate phase. It would be so simple if dose could be worked out by maths or even science but time and time again we see it can’t. Maybe one day. The rundown into thyroid issues tends to be irregular in itself, a nightmare for us and ‘applying any methodology’. It’s perhaps even more difficult then, than when we hit the point of no return (without introduction of hormones).

I keep seeing an advertisement on TV from some seating company who make each chair to ‘your individual needs’, height etc. Well if our individual needs can be taken into account for a chair ………. Surely to goodness we can pay attention to something even more important than our chair!

Hashiboy profile image
Hashiboy in reply to arTistapple

arTistapple hi there, yes can someone please come up with a reliable personal science based formula. It’s a pain doing all this trial and error especially with our health.

arTistapple profile image
arTistapple in reply to Hashiboy

We wish!

tattybogle profile image
tattybogle in reply to arTistapple

applies to bicycles too .... the standard 'rules' for how you should set a bike up perfectly , give me shoulder /neck ache and cycling was a chore that tired me out quickly . Then i borrowed my sons bike, it's far 'too tall' for me , the seat is 'too far back' , the handlebars are extended 'too far forward' .. and yet .. i can ride it for miles and feel good doing it . ( i 'borrowed' it about 15yrs ago... haven't given it back yet .lol).

The standard 'rules' for how to set a bike up just don't apply to my particular set of shoulder / neck problems.

FancyPants54 profile image
FancyPants54 in reply to tattybogle

I used to have all those issues with bike set-up too!

in reply to arTistapple

I know exactly what you mean! When I was diagnosed in the 1990s, I was told I would eventually need 100-150 mcg of levo daily. How can anyone tell you that in advance I wonder?! The doctor in question told me that taking more than 150 mcg of levo a day was "dangerous". For a long time, I believed him and never questioned that statement. I felt horrible but never once considered taking more than 150 mcg of levo. There are so many stupid myths surrounding thyroid hormone replacement. I have come to believe the biggest problem of all is the ignorance of most doctors.

tattybogle profile image
tattybogle in reply to

Agreed , the variability between 'healthy' individuals is huge , not just in how well they convert , but also in how much T4:T3 their thyroid makes .

The 1990 Pilo et al. study that the often quoted "humans have 80% :20%" (T4:T3) came from, gives the actual data for the 14 individuals the study was based on.

Subject 3's thyroid makes much more T3 than subject 14's does.

Also when we look at the 10 healthy subjects in the graph in my reply below (Ankrah -Tetteh et al ), some of them naturally have T4/T3 well over 50% . but some have them way below 50% .. some have T3 a bit lower than T4 , some have T3 a bit higher than T4.

If we then add the effects of 'disease' into the mix , and other hormone changes as we age which all interact with thyroid hormone , and changes in thyroid set points and deiodinases as a direct result of taking thyroid hormones, and the fact that the goalposts sometimes move fro no apparent reason ~

then trying to generalising about the optimal/ ideal/ usual ratio for thyroid hormones is doomed to fail for a lot of people.

Of course , replicating their previous fT4 / fT3/ TSH levels 'in health' is never really possible using oral thyroid hormones , and even if you could, it wouldn't guarantee they would be optimal for them now.

it's a long and methodical route of trial an error , to find out what works best for an individual, (and then what works best when that changes) .... people (doctors and patients) don't want to accept this is necessary and/ or don't have time for this.... they want a simple recipe , but no such recipe exists that will work for everyone ..... it's a bit like breadmaking , the result depend on more than just measuring the ingredients .

..
tattybogle profile image
tattybogle in reply to tattybogle

10 healthy subjects

..
Hashiboy profile image
Hashiboy in reply to tattybogle

tattybogle that’s fascinating, thanks for sharing. I think there’s a real issue with big generalisations from limited data. Hopefully good doctors balance that with clinical skill and make use of personal experience. In terms of average thyroid output I often wondered if people like me with the genetic polymorphism associated with poor conversion had been compensating all out lives by pumping out a higher level of T3?

tattybogle profile image
tattybogle in reply to Hashiboy

yes , i think you probably have , and on an evolutionary level this makes sense of why the thyroid bothers producing any 'ready made' T3 at all........ by doing this , it can make adjustments , and do it very quickly if needed. and this keeps help keep life stable despite all sorts of circumstances / other problems happening at any point.

unfortunately, if the thyroid becomes defunct this flexibility to compensate is lost.

in reply to tattybogle

I could not agree more! First of all, taking oral thyroid hormone is not how nature does it. Also, a healthy thyroid can increase and decrease hormone production as needed. A person taking thyroid hormone replacement cannot.

I think Tania (Smith) has a lot of interesting theories. It just takes a lot of time (at least for me) to get through one of her articles. But she definitely knows what she is talking about, and does not publish anything that she has not thoroughly researched first.

Hashiboy profile image
Hashiboy in reply to tattybogle

Thanks for that tattybogle judt rereading this thread, I really appreciate this, reminds me not to chase numbers.

Hashiboy profile image
Hashiboy in reply to

Hi there Hidden yep, totally get there’s no golden ratio and our hormonal needs definitely change with age ands state of health, diet etc. , My dilemma is I’m on combination therapy, it’s a big improvement but I know the peaks and troughs I’m experiencing are not ideal so I’m looking at options and other people’s experiences of using more formal medical guidelines than I’ve used so far. Good luck with getting back to feeling better.

in reply to Hashiboy

I found this enlightening and informative:

linkedin.com/pulse/reverse-...

A lot of it applies to my current situation.

Best of luck to you too😊

tattybogle profile image
tattybogle in reply to

nice article ,the other stuff from him on there seems good too ,and full of useful references

Easylover profile image
Easylover in reply to

That is so interesting. I only read a part of it briefly. I will come back to your replay. I am so happy I'm on this forum. Thank you!

Easylover profile image
Easylover in reply to

I feel just like you. NDT worked for me for over 20 or more. Now, it doesn't. What doses and time are you taking of NDT and T3 if you don't mind. Thank you! Curious.

Hi Hashiboy, as we have discussed before I think you should rule out your adrenals before you make any great changes. I also spent a lot of time fiddling and faffing with doses - t4 only, t3 only, t4 and t3 in various ratios, NDT etc. it cost me 3 years and untold emotional distress. It may come to nothing, but the value of ruling it out will still be useful.

As a side note, I don’t think that following static dosing advice from a book is much of an improvement on GPs keeping us between lab ranges on the screen. It’s still just a prescriptive assumption devoid of any assessment of your response to variations doses, brands, timings, ratios, other lifestyle inputs etc.

Easylover profile image
Easylover in reply to

Well put.

helvella profile image
helvellaAdministratorThyroid UK in reply to Easylover

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SlowDragon profile image
SlowDragonAdministrator

My own experience

After 25 years, very unwell on just levothyroxine - hashimoto’s and poor vitamin levels

2016 - after a year strictly gluten free with optimal vitamin levels by significant level of supplements. Heterozygous Dio2

On 125mcg levothyroxine, only, always same brand ….finally prescribed T3 (on NHS)

Before adding T3

Ft4 at 21 (12-22) and Ft3 at around 4.6 (3.2-6.8)

Levothyroxine reduced to 100mcg and slowly started on 2 x 5mcg T3. After 2 months increase to 20mcg per day (10mcg, 5mcg and 5mcg)

After 4 years experimenting and health fully restored and very active …..now on 125mcg 4 days and 112.5mcg 3 days

Plus 3 x 5mcg T3 at roughly 8 hour intervals

Now also strictly dairy free for last year …..also (annoyingly) gave significant improvements

Hashiboy profile image
Hashiboy in reply to SlowDragon

Thanks SlowDragon really useful info. Your dosing looks pretty close to those guidelines. I think I need to consider shifting to something closer. I admire you managing to go gluten and dairy free.

SlowDragon profile image
SlowDragonAdministrator in reply to Hashiboy

Both strictly GF and DF were utterly transformative….I would never go back.

Easy these days with lots of gluten free and dairy free alternatives (just currently eating a vegan ice cream!)

I was looking at life in a wheelchair/mobility scooter…..now fully recovered…..typically 8,000-10,000 steps a day…..it’s quite an incentive to stick to what works

I find it essential to split T3 as 3 doses per day. 6.20am, 2.30pm and 11pm. Mid afternoon dose timing varies a bit to fit around food

I still pace and if I know I am having a busy day later in week will have a quiet few days before and after

Still couldn’t run a marathon, or even a mile …..but that might be more my age (64).

I find it essential to keep both levothyroxine and T3 finely tuned and always same brands

As a bonus I lost 10kg in weight over last 3 years ..approx half the weight I gained in previous 25 years on just levothyroxine…..

When on just 125mcg levothyroxine …..left me extremely unwell and very immobile

I aim to be soya free, though I do occasionally have very small amount soya lecithin

Hashiboy profile image
Hashiboy in reply to SlowDragon

Thanks for the details. I’ve posted before asking about going gluten free. I must give it a shot but so hard to find time to get that organised. One of these days I’ll try it.

SlowDragon profile image
SlowDragonAdministrator in reply to Hashiboy

It’s easy for me at home because I do the shopping and cooking

Eat out at cafe/restaurants is usually fine

When I go abroad I always take a list of what foods I need to avoid in language of country visiting

Eating at friends or family can be challenging but most people are only too keen to help

It might mean quite a lot more changes than that… if only early bed and no coffee were enough!

I currently take 125mcg levo and 25mcg T3 although I'm about to go up to 30mcg. .... If it helps!

Hashiboy profile image
Hashiboy in reply to WitchingHour2point0

Thanks  WitchingHour2point0 - that is really helpful. Lots of feedback from people in about 120ish T4 plus 10 to 25mcg T3. I’m really beginning to wonder why the private endo I saw took me from 137.5 T4 to 25 T4 and 40 T3 in a month and then to 50 T3 only. Hopefully the NHS guys I’m seeing will work towards a better balance.

SlowDragon profile image
SlowDragonAdministrator in reply to Hashiboy

really beginning to wonder why the private endo I saw took me from 137.5 T4 to 25 T4 and 40 T3 in a month and then to 50 T3 only.

Yes utterly extraordinary/irresponsible thing to do

What were Ft4 and Ft3 results on just 137.5mcg Levo

And were vitamin levels optimal

If Ft4 was right at top or over range…..reduce levothyroxine by 25mcg

If Ft4 was 60-80% through range leave levothyroxine at current dose

If Ft4 was 40-70% through range, tried increasing levothyroxine

Adding T3

Should have added 2 x 2.5mcg initially…..then to 2 x 5mcg

Retest after 6 weeks…..and review

Hashiboy profile image
Hashiboy in reply to SlowDragon

I know , looking back is was a big change very quickly. and can’t figure why he didn’t start out with some more minor changes. He suddenly left the country about three months into starting me on treatment. I was left on 60mcg T3 only with severe palpitations and shakes. My GP and a new NHS endo have been left to sort things out. I’m glad I started T3 but think the private endo could have been more cautious and not simply left me hanging.

On 137 mcg T4 I was about 80% through the range and felt over medicated so I imagine an optimal combo dose is in the range of 125mcg T4 and 10 to 20mcg T3

SlowDragon profile image
SlowDragonAdministrator in reply to Hashiboy

There’s a lot of cowboys out there…..expensive in ££ and loss of good health

I think because adrenals have this interface with our psychological health it’s easy to see them as lesser than, or more easily manipulated by “reducing stress.” The reality is that adrenals are as fragile and needy as any other organ, they require as much focus and attention as thyroid hormone replacement gets, altho they barely ever get it.

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