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Self medicating again: Wanting to try changing 200mcg T4 to T4/T3 combo

cody_lamonica profile image
14 Replies

Hi, I have had RAI so have to use full exogenous replacement.

Currently on 200 mcg thyroxine.

Tried armour, T4 only, but T4/T3 combo I never got right - I found my anxiety is unbearable.

Trying to do it correctly this time. The fatigue and moodiness on T4 sucks, even though my endo says my labs are "perfect" - (0.97 TSH, 28 FT4 (above range), 2.8 FT3 (Below range).

I know that if I use too much T3 I am literally housebound with anxiety and too scared to answer the door to an amazon delivery driver, so I want to get it right - totally sick of living in a state of lethargy on T4 only. (Even though I was kinda ok on that a few years ago).

tl;dr:

I believe the right move would be to

1) Wait a week for some T4 to drain

2) Reinstate EITHER

a) 100mcg T4 + 12.5mcg T3

or, b) 150mcg T4 + 12.5mcg T3

or, c) 100mcg T4 + 25mcg T3 (maybe split the T3 dosage)

Would you recommend a, b or c please?

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cody_lamonica
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SlowDragon profile image
SlowDragonAdministrator

none of these

FIRST get FULL thyroid and vitamin testing done

See exactly what vitamin levels are like

Before considering adding T3 vitamin D, folate, ferritin and B12 must be at GOOD levels

What vitamin supplements are you currently taking

You’re currently taking 200mcg levothyroxine

Do you always get same brand levothyroxine at each prescription

Please add actual ranges on Ft4 and Ft3 test results

Was test done as recommended, early morning ideally just before 9am and last dose levothyroxine 24 hours before test

Approx how much do you weight in kilo ?

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Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

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10% off code here 

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Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Adding T3 must be done incredibly SLOWLY

12.5mcg is far too much

Starting with just 1/4 tablet maximum

Many people start with 1/8th tablet initially…..and 2nd 1/8th tablet approx 10 hours later in same day

pennyannie profile image
pennyannie

Hey there again Cody :

I've just reread my comments to you from your first post.

So the good news is I am still taking NDT and am much improved self medicating and just run a yearly full thyroid panel more for the vitamins and minerals than my T3 reading as in that department I believe my brain, outlook, and psychological perspective all vastly improved.

I'm sorry you have not yet found a treatment option that has worked well for you,

It is essential that your ferritin, folate, B12 and vitamin D are up and maintained at optimal levels for any thyroid hormone replacement to work well and any physiological stress ( emotional or physical ) chronic pain, depression, dieting and ageing will also compound your health issues and down regulate T4 - T3 conversion.

I found switching to NDT very easy - it is a fixed ratio of T3 and T4 at around 1/4 - and this 1/4 ratio suits very many thousands of people very well - though do read some people find that when nearing their ' sweet spot ' they add a little T3 or a little T4 - to get their dose just right.

I don't know if I've found my sweet spot, but it works, and much easier to just take in a combined tablet rather than take T3 and T4 and try to find a balance of these two vital thyroid hormones.

Previous you restarted NDT and guess that didn't work as you wouldn't be back on here :

We do now have a research paper and quite why this toxic substance is still offered to Graves patients in a health care setting is beyond my understanding :

ncbi.nlm.nih.gov/pubmed/306...

cody_lamonica profile image
cody_lamonica

Argh, I knew I'd get a copy / paste response asking me to do the basics.

I've been doing this 20 years. I get bloods done every 2 months.

I do the basics, vit D upper normal, folate always perfect, B12 always top normal

I was asking a straight question and hoping for a straight answer, not to be patronised.

Sorry if you put effort into replying, but I wanted a simple answer. I'll take my questions elsewhere.

Lalatoot profile image
Lalatoot in reply tocody_lamonica

The straight answer isUntil we know how far over the top of range your ft4 is we cannot suggest how much to lower levo dose. So that would be the first question.

My second response is

instead of having a hissy fit why not give others the time to respond. It is now 9am and folks with experience are just beginning to look at the forum.

Your response is hardly likely to make folks want to reply.

I introduced lio t3 slowly and methodically. It took 2 years of small changes 1 thing at a time for me to settle on doses and dose timings.

To be gentle on the body changes in levo are max of 25mcg and changes in lio in 5mcg.

How much you have to reduce levo depends on how far over range you are.

Introduce 5mcg lio and thereafter increase 5mcg every 2 weeks until you get to your dose or max 20mcg.

Jazgirl profile image
Jazgirl in reply toLalatoot

sorry I can’t respond to original post. Thanks for the sound advice new to lio and 20mcg hit me hard reduced to 5mcg x2 daily and very slowly bringing it up as anxious in 20. Have a good day

SlowDragon profile image
SlowDragonAdministrator in reply tocody_lamonica

Well you won’t make progress if you start on 12.5mcg

And Ft4 is far too high (assuming range is 12-22)

But suit yourself

pennyannie profile image
pennyannie in reply tocody_lamonica

No one is patronising you :

I hope you are being dosed and monitored on your Free T3 and Free T4 readings to be balanced ideally within the ranges at around a 1/4 ratio and not on your TSH reading :

You'll likely need a high T3 as your body has been used to tolerating higher than so called normal levels.

RedApple profile image
RedAppleAdministrator in reply tocody_lamonica

cody_lamonica 'but I wanted a simple answer. I'll take my questions elsewhere.'

If you want a simple answer, ask your GP or endo. They like simple too.

If you want more considered suggestions and discussion that might lead you down the right path, from people who have personal experience, stick around here and converse in a less antagonistic way.

pennyannie profile image
pennyannie in reply tocody_lamonica

The truth is no one knows - our bodies are unique to us and we have our own set point as where we feel well and can metabolise - and why doctors don't have the time to fine tune our engines.

it's also a fact that you need to be as best prepared as you can be - I spent around 18 months building up my vitamins and minerals to optimal and taking adrenal glandular which I still need to do on the daily basis some 6 years later.

It's difficult as patience is thin on the ground when unwell and dealing with a poorly understood and badly treated autoimmune disease.

in reply tocody_lamonica

Well, in 20 years it looks like you've made next to no progress so how long you've been doing this is clearly irrelevant.

Why bother asking for advise if you're just going to blow raspberries?

humanbean profile image
humanbean

Currently on 200 mcg thyroxine.

but T4/T3 combo I never got right

a) 100mcg T4 + 12.5mcg T3

or, b) 150mcg T4 + 12.5mcg T3

or, c) 100mcg T4 + 25mcg T3 (maybe split the T3 dosage)

Would you recommend a, b or c please?

One problem you have (or your endo has?) is that you are incorrectly valuing both T3 and T4. For example, in (a) you are taking away 100mcg of T4 and replacing it with 12.5mcg of T3. They are not remotely equivalent.

There are differences of opinion on what the equivalence is when comparing what T4 is "worth" and what T3 is worth.

I always work on the assumption that T3 is 3 times as potent as T4. So 10mcg T3 would be equivalent to 30mcg T4. This works for many of us on this website.

Some people find that, for them, T3 is 4 times as potent as T4. So 10mcg T3 would be equivalent to 40mcg T4.

Most doctors are absurd when it comes to doing these calculations. They work on the assumption that T3 is, at best, 5 times as potent as T4 - or worse, some even say it is 14 times as potent as T4. This nonsense comes back to a single article published by Pilo and others in 1990. The paper is discussed and mentioned many times on the thyroidpatients.ca website.

thyroidpatients.ca/2019/05/...

thyroidpatients.ca/2019/06/...

If you search the above website for "Pilo" you'll see he gets mentioned often.

.

The results you quote on 200mcg T4 :

0.97 TSH, 28 FT4 (above range), 2.8 FT3 (Below range)

suggest you need to reduce your T4 and start taking some T3.

It would be best if you supplied the actual ranges, so we can see how far over the T4 is and how far under the T3 is.

Since your conversion from T4 to T3 is poor, I would suggest that you start by adding quarter of a tablet (6.25mcg) of T3 to 200mcg of T4. Note that excess T4 can cause anxiety, and so can too little T3.

Taking T3 often reduces the amount of T4 someone has, whether that T4 comes from the thyroid or from a prescription. So adding a small dose of T3 to your T4 probably won't push the T4 higher, it may push it lower.

Step 1 --- Add 6.25mcg T3 to 200mcg T4. Then test privately in 4 weeks. This is earlier than usually suggested, but if you are bedridden or crippled with anxiety then it might be worth speeding up the process of changing dose for a short time.

I get the impression that you are nervous about taking thyroid hormones. Please read this thread :

healthunlocked.com/thyroidu...

Also, please be aware that in the early days of taking T3 it is very common for people to find their heart rate increases for a while after taking a dose of T3, then it reduces for a few hours then it increases again as the T3 available in the body runs out. A lot of people who are new to T3 interpret this speeding up of the heart as "anxiety", but it isn't anxiety. It is just what happens in the early days when people take T3 at the wrong dose (everyone has to start somewhere), and they aren't used to the sensations it causes.

Once someone starts taking T4 and T3, be aware that, without changing total daily dose, they can experiment endlessly. When I first started taking T3 I split it into 2 doses, 3 doses, 4 doses, 5 doses (essentially reducing it to crumbs), changed the time of my doses until I found the timing and dosing that worked for me. I kept records to show what I'd tried and how it made me feel.

I had very high (over the range) cortisol when I first started taking T3. I found that I tolerated my first dose of T3 best at the time of day when my cortisol was best, which was late morning.

Regarding T4, some people find splitting their dose of T4 helps them feel better. I've never tried this personally, but people should do whatever works for them.

I was able, eventually, to take all my T4 and T3 in one dose when I woke up, but it took quite a long time to get there. My heart rate doesn't really change now when I take my thyroid hormones.

Jazzw profile image
Jazzw

0.97 TSH, 28 FT4 (above range), 2.8 FT3 (Below range)

So. On 200mcg levothyroxine, you aren’t converting very much T4 to T3 (assuming the usual sort of ranges). Even though you’re on enough to push your levels over the top of the range. So that ain’t working.

You’re feeling the way you do because you don’t have enough T3 on board (would be interesting to know what your iron levels are like too). So I think adding T3 has to happen.

But you’re talking about making changes much too dramatically. Most of us couldn’t tolerate adding 12.5mcg all at once and most of us wouldn’t fair well at changing levothyroxine dosage by more than 25mcg at a time.

If you wanted to try something different, I’d be inclined to reduce levothyroxine to 175mcg and add 6.25mcg liothyronine (I’m assuming you’ve got 25mcg tablets—so a quarter). You already know that adding T3 too quickly makes you feel worse. This is going to be a longer game. Edited to add—I’ve just seen what HumanBean suggested and that might be better.

You’ll need to stay on a steady dose for 6 weeks before being tempted to change anything. Hard, I know, but dramatic switching up or down of doses doesn’t work for any of us. Personally, I’d hold at 200mcg or 175mcg levo and 6.25mcg liothyronine for 6 weeks, test again, see what the results say then and go from there.

I’m sorry you’re feeling so rubbish. Hope things get better soon. x

Kalin9955 profile image
Kalin9955

oh my! I had RAI too. In 2015 for a hot thyroid nodule. Now I have two more, they say they are suppressing my TSH to stop nodule growth. Is that a thing???? but they have me on less than 88 mcg per day of thyroxine. I have that horrible anxiety where getting out of bed alone is a challenge!! Sleeping is ridiculous…I just can’t get enough..I work into the early morning hours so that doesn’t help. I have no clue what you should do. I’m in Texas, USA, as long as labs look okay they just want to give me drugs for how I feel!!!!

Locky1971 profile image
Locky1971

I'm on 100mg t4 and 20mg t3 split dose and my doctor said to go back to t4 only as having problem getting t3 authorised. She said to take 175mg of t4. So answer C should be the best one to try based on that.

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