T3 medication lowering FT4 - causing worsening ... - Thyroid UK

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T3 medication lowering FT4 - causing worsening of symptoms

PinkSkittles profile image
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When taking T3 medication (plus T4) it drops your FT4. Has anyone found that this drop in FT4 made them feel worse ie feeling more depressed and fatigue/energy even worse (or have you read about this happening to anyone)?

Did you have to increase your T4 medication to get your FT4 up higher in the range when this happened?

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PinkSkittles
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SlowDragon profile image
SlowDragonAdministrator

your profile says

Before adding in t3:

Tsh: 1.01 (0.35-4.94)

Ft3: 3.9 (2.4-6)

Ft4: 14.3 (9-19.1)

Free T4 (fT4) 14.3 pmol/L (9 - 19.1) 52.5%

Free T3 (fT3) 3.9 pmol/L (2.4 - 6) 41.7%

How much Levothyroxine were you taking

Why did you not try increasing levothyroxine again as next step

SlowDragon profile image
SlowDragonAdministrator

Is your hypothyroidism autoimmune

Please add most recent vitamin D, folate, B12 and ferritin results

What vitamin supplements are you taking

DippyDame profile image
DippyDame

One day ago you stated that you are taking 50mcg T4 plus 32.25mcg T3

Just before adding T3 you gave your test results as...

Free T4 (fT4) 14.3 pmol/L (9 - 19.1) 52.5%

Free T3 (fT3) 3.9 pmol/L (2.4 - 6) 41.7%

Your T4 to T3 conversion, on whatever your dose was then, looks fine....but you needed more T4 to raise both Frees ( FT4 and FT3) which we aim to be roughly approaching 75% through the reference range... bearing in mind that we are all different .

Before adding T3 we usually increase the T4 close to the top of the reference range to try and achieve as much T3 as possible from T4 to T3 conversion... while ensuring FT4 remains within the reference range.

Did you follow this protocol?

At that stage we also aim to optimise vit D, vit B12, folate and ferritin

However, you said,

"He ( your thyroid doctor) told me to keep taking t4. But ive read here its good to have to t4 back up to convert to t3 so you have a back up."

Sorry, but I don't understand what you mean here by T4"back up".

You were advised by your doctor to continue with T4 which seems like sensible advice

But you ignored it and wrote ..

I'm trying t3 so I dont have to waste time with t4 and possibly get worse. So I just need guidance with that now.

You increased T3 too quickly. but you also said you followed this doctor's advice to use/ increase T3 both high and fast, which contradicts his advice to continue with T4.

We don't normally introduce T3 until we have tried and failed to achieve an adequate amount of T3 from T4 to T3 conversion.

Did you have the thyroid genetic test to establish a Dio2 polymorphism?

If so was this polymorphism inherited from one or both parents....if from both then conversion status is further reduced.

I ask because the labs above do not indicate poor conversion yet you suggest poor conversion

You continued,

Also i thought id try and self treat now for a bit rather than keep paying him. He got the ball rolling for me but sometimes its possible to continue for a bit alone.

I agree, it is possible to self treat with T3, I and many others here do so but it is important to understand that T3 is a very powerful hormone and must be treated with respect.

It is dangerous to overmedicate!

Also, T3 is not the panacea of all ills.

Have you been diagnosed with Thyroid Autoimmune Disease. ?

So to try to answer your concern...

When taking T3 medication (plus T4) it drops your FT4. Has anyone found that this drop in FT4 made them feel worse ie feeling more depressed and fatigue/energy even worse (or have you read about this happening to anyone)?

How much T4 did you drop?

Yes, T3 will lower both TSH and FT4 but it looks as if you reduced your T4 dose before adding T3

Are you quite confident that by taking control of your dosing you have not become overmedicated and that the symptoms you are experiencing are not those of overmedication?

Too much T3 can have the converse effect...that is too much can feel like too little.

I'm just trying to join up the dots to find a solution for you.

I suggest you have a full thyroid test after being on a steady dose of hormone for at least 6 weeks the results will point to the way forward because right now you seem to be making too many dose changes too quickly and suffering the consequences.

I'm truly sorry you feel unwell but testing followed by correct medication should help.

Good luck!

arTistapple profile image
arTistapple in reply to DippyDame

DippyDame you have made a really good assessment here. I hope PinkSkittles is able to pay due attention.

connyankee profile image
connyankee in reply to arTistapple

Isn't T4 just a storage hormone? Isn't FT3 what we wish to pay attention to keeping it in the mid to upper quartile of the range?

PinkSkittles profile image
PinkSkittles in reply to connyankee

Yes thats right but for some reason I've come across a couple of people who only feel well when their ft4 is optimal as well as their ft3.

FancyPants54 profile image
FancyPants54 in reply to PinkSkittles

I don't know about "feel well" but I most definitely need to have some FT4 in my tank to stop me feeling dreadful. I have tried taking T3 on it's own at two separate times during the past 5 or 6 years and both times I've felt awful. As soon as I add in a little T4, things pick up.

I am currently taking NDT, but as we have discussed before, my FT4 seems to drop an inordinate amount with a T3 containing medication and at 24% of reference range or thereabouts, I don't feel good so I am adding extra Levo to my NDT to try to get the FT4 level up to at least halfway through range.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

Yes good to know and very helpful

PinkSkittles profile image
PinkSkittles in reply to DippyDame

greygoose said I have a conversion issue based on those results above.

PinkSkittles profile image
PinkSkittles in reply to DippyDame

greygoose this person doesn't think I have a conversion issue ^^^

DippyDame profile image
DippyDame in reply to PinkSkittles

I'm absolutely not disagreeing with greygoose whose opinion I value greatly.

I'm just a tad curious about your labs in relation to your dosing regime.

Do you have your diagnostic/first lab results for hypothyroidism....before medication and dose tweaking.

Once T3 is added we cannot use Free results to judge conversion status

I realise that test was done before T3...but was it done at 9am and at least an hour away from food and drinks and were you on a steady dose of thyroid replacement hormone /T4 for at least 6 weeks before this test

You keep asking for personal experiences which can be encouraging but untimately these are unlikely to be what you as an individual need to follow.

for some reason I've come across a couple of people who only feel well when their ft4 is optimal as well as their ft3.

(Optimal meaning best; most likely to bring success)

I think you'll find that to feel well both FT4 and FT3 need to be optimal for every individual......"a couple of people" is not an anomoly.

You have had a great deal of advice and we are all concerned that your health improves but we are now going round in circles and the only way for you to get back on track, as we have explained, is to hold a steady dose for at least 6 weeks, have a full thyroid test according to advised protocol and have the results correctly analysed so that you can find yourself on the road to recovery.

We can help you with that if you wish...just post your hew lab results

I hope this helps to clarify things

I doubt that I can add to what I've already offered.

Take good care and best of luck.

greygoose profile image
greygoose in reply to DippyDame

I realise that test was done before T3...but was it done at 9am and at least an hour away from food and drinks

That will only affect TSH, not FT4 or FT3 levels, so doesn't have any effect on conversion rates. Anyway, conversion rates don't react quickly enough - to be affected by what you had for breakfast, nor what time the blood was taken. So, I still maintain that although not catastrophic, conversion is not good. :)

PinkSkittles profile image
PinkSkittles in reply to greygoose

Would it be possible for someone to help me understand why you both disagree on my conversion?

greygoose profile image
greygoose in reply to PinkSkittles

Well, I can't. lol But, I don't think DippyDame has actually voiced an opinion on that. She just asked how the test was done. It was TiggerMe that said she thought your conversion was good, but she was using a different method of assessment. I don't know about her method, but by mine, your conversion doesn't look too good.

PinkSkittles profile image
PinkSkittles in reply to greygoose

DippyDame also said my conversion wasnt good

"One day ago you stated that you are taking 50mcg T4 plus 32.25mcg T3

Just before adding T3 you gave your test results as...

Free T4 (fT4) 14.3 pmol/L (9 - 19.1) 52.5%

Free T3 (fT3) 3.9 pmol/L (2.4 - 6) 41.7%

Your T4 to T3 conversion, on whatever your dose was then, looks fine....but you needed more T4 to raise both Frees which we aim to be roughly approaching 75% through the reference range... bearing in mind that we are all different ."

TiggerMe profile image
TiggerMe in reply to PinkSkittles

DippyDame also said my conversion wasnt good

"One day ago you stated that you are taking 50mcg T4 plus 32.25mcg T3

Just before adding T3 you gave your test results as...

Free T4 (fT4) 14.3 pmol/L (9 - 19.1) 52.5%

Free T3 (fT3) 3.9 pmol/L (2.4 - 6) 41.7%

Your T4 to T3 conversion, on whatever your dose was then, looks fine....but you needed more T4 to raise both Frees which we aim to be roughly approaching 75% through the reference range... bearing in mind that we are all different ."

I don't think Dippy and I disagree? It is greygoose that has a different view as she doesn't like ratios

T4:T3 Ratio 3.667 

So with a conversion ratio between 3 & 4 then this I would consider good and with it above 4 not so good and could be due to lack of ferritin, folate, B12 and Vit D... when 5 - 6 a definite sign of poor conversion and probably wonky DIO2

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

Yes! Greygoose thinks I have a conversion issue.

You and dippydame think I don't

So I need to work out who is right!

greygoose profile image
greygoose in reply to PinkSkittles

Actually, that's the other way around. I do think you have a conversion issue. :)

PinkSkittles profile image
PinkSkittles in reply to greygoose

Oops yes! Sorry Ive edited it

TiggerMe profile image
TiggerMe in reply to PinkSkittles

I'm confused 😵‍💫

greygoose profile image
greygoose in reply to TiggerMe

This whole thread is very confusing! Can we start again? lol

PinkSkittles profile image
PinkSkittles in reply to greygoose

I know hahaha!!

TiggerMe profile image
TiggerMe in reply to greygoose

🙏🤗

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

Goodness me!! Sorry!

I meant dippydame and you (tigger me) said my conversion was good pre t3.

Greygoose said it wasnt good pre t3.

DippyDame profile image
DippyDame in reply to PinkSkittles

I don't think we disagree.....see my reply below.

PinkSkittles profile image
PinkSkittles in reply to greygoose

The test was done about 11 am ish. I doubt I ate before it.

greygoose profile image
greygoose in reply to PinkSkittles

That was too late. The TSH would be nearing its lowest point at that time. It would have been higher before 9 am.

In the greater scheme of things, that wouldn't matter, we just accept that the TSH varies throughout the day. But doctors don't seem to understand that, and think the time of day doesn't matter. It does if you want a diagnosis or an increase in dose, though, because TSH is all they tend to look at. They don't understand anything else.

PinkSkittles profile image
PinkSkittles in reply to greygoose

I wasnt treating based on tsh though so does it matter?

greygoose profile image
greygoose in reply to PinkSkittles

It only matters to a doctor. If you're self-treating it doesn't matter at all. TSH is pretty much irrelevant in reality, and a very bad indicator of thyroid status.

What's important to you is getting that 24 hour gap between the last dose of levo and the blood draw, and 8 to 12 hours for the T3.

PinkSkittles profile image
PinkSkittles in reply to greygoose

Okay I was confused why you said it was too late as I started t3 after that test so no issues with treating only based on tsh.

greygoose profile image
greygoose in reply to PinkSkittles

That's good. :)

I meant too late to get the highest TSH, that's all. lol

DippyDame profile image
DippyDame in reply to greygoose

I did say I wasn't disagreeing with you ...but just wanted to clarify the testing protocol used. I do understand that testing at 9am is to try to achieve the highest TSH.

However, I followed up in that same sentence you quoted from, by asking if she had been on a steady dose of T4 for at least 6 weeks before testing....I understand that then indicates more accurately the hormone levels once they have settled in the system... and that testing sooner gives a less accurate picture.

Do we know definitely that a big enough gap was left between dosing and carrying out that test?

It all sounds a tad confusing and I thought her diagnostic test may give a clearer picture of her thyroid status.

She certainly needs to be correctly medicated after some confusion and rather chaotic dosing....but I'm not a thyroid expert.

I think we all agree that full testing, according to protocol, is her best way forward....and now seems to be her plan.

I hope she recovers as soon as possible

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Hi Dippydame I didnt take t4 the morning of my test.

greygoose profile image
greygoose in reply to DippyDame

However, I followed up in that same sentence you quoted from, by asking if she had been on a steady dose of T4 for at least 6 weeks before testing....I understand that then indicates more accurately the hormone levels once they have settled in the system... and that testing sooner gives a less accurate picture.

Yes, I know you did. :) I just assumed that that was a given and that she had been on a steady dose for more than six weeks.

Do we know definitely that a big enough gap was left between dosing and carrying out that test

You have a point there. I suppose that was just another thing I took for granted.

I think we all agree that full testing, according to protocol, is her best way forward....

Agreed. :)

And, I would add, that now that she's on T3, her rate of conversion doesn't really matter, anyway. So, maybe we can just forget that, going forward, and concentrate on making the best out of what we have. :)

DippyDame profile image
DippyDame in reply to greygoose

And, I would add, that now that she's on T3, her rate of conversion doesn't really matter, anyway. So, maybe we can just forget that, going forward, and concentrate on making the best out of what we have

Absolutely...hope her current dose of 50mcg T4 plus 32.25mcg T3, going forward, works for her soon!

PinkSkittles profile image
PinkSkittles in reply to DippyDame

It was done about 11am, probably/most likely before food, no caffeine, 6 weeks on 50 mcg t4.

Sorry I'm just a bit confused! I dont know what to think about having a conversion issue. So you dont disagree with greygoose but you do think I have a conversion issue?

FancyPants54 profile image
FancyPants54 in reply to PinkSkittles

I would not worry about conversion now if I were you. You can't check it now you are on T3 and T4 so it's rather irrelevant. It's most useful when trying to prove to a GP or endo that you need to trial T3. You have already got over that hurdle so it looses a lot of relevance.

All you can do is optimise your B12, Ferritin, Folate and Vitamin D to help you as much as possible and then just concentrate on trying to find the right balance of T3 and T4. And the first step in that process is blood testing. Everyone is recommending 6 weeks on a steady dose first, apart from 1 person advocating you do it now. I can see why she said that and it will give you a good indication of your FT3 levels. But the FT4 levels won't be reliable. So you could choose to test now to see what's going on with your FT3, but then test again and compare at the 6 or even better 8 week point.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

Im getting different opinions

3 people have worked out my conversion whilst I was on t4.

Re testing: yes Im testing next week to make sure ft3 isnt too high.

And Im testing 4 weeks from now, at which point I will have been on 31.25 mcg t3 for 6 weeks.

DippyDame profile image
DippyDame in reply to PinkSkittles

Yes...I think it is very likely but I was just trying to get the full picture. Details were a bit confusing and I understand you need clarification.

Your description above helps clarify your testing protocol....thank you for that.

If you were only on 50mcg T4 when testing then I'm surprised you were not advised to increase to 75mcg T4, wait another 6weeks, test again...and most likely repeat this until your labs improved and you felt better.

Further results as you increased your dose and tested according to protocol would have confirmed conversion status...we only had one result to go on.

Normally, as I explained before, we would take the following approach

Before adding T3 we usually increase the T4 close to the top of the reference range to try and achieve as much T3 as possible from T4 to T3 conversion... while ensuring FT4 remains within the reference range.

I'm very sorry you have had a miserable thyroid journey so far, I hope your new test will help start your recovery

Take care....we're all here to help

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Okay so regarding the result I gave whilst on t4 and just before starting t3 do you think I have a conversion issue?

DippyDame profile image
DippyDame in reply to PinkSkittles

Conversion no longer matters now that you are taking T3.....no need to pursue that line any further.

Test after 6 weeks on current dose and see where your FT3 now sits......I doubt you are overmedicated but you may not be correctly medicated yet.

Monitor your symptoms as before....they are very important on T3

Stop worrying, test and take it from there.

PinkSkittles profile image
PinkSkittles in reply to DippyDame

I dont mean to sound rude (apologies if I do) but it was you who was concerned that I had a conversion issue before starting t3. You made a point of it.

Was there a reason why you were concerned about it before but not now?

DippyDame profile image
DippyDame in reply to PinkSkittles

Yes!

And yes, I did raise conversion because initially we need to establish the accurate level of Frees before adding T3

Now that you have added T3, conversion doesn't matter...you no longer need T3 from conversion.

I hope that is clear now

The reason I've been asking about your pre T3 testing protocol was to establish that the results were accurate (test not done less than 6 weeks after a previous dose change etc)

We need to join up all the facts in a logical sequence in order to find the answer.

I stand by my attemps to do just that.

It has been difficult to unangle the facts here, but you now say you have ordered a test so hopefully the results will bring an end to this extremely convoluted post.

I hope my explanation is clear because I have nothing further to say on this issue

Best of luck.

sparkly profile image
sparkly

I think DD has explained things perfectly. Me personally I would test straightaway because if you are over medicated now on t3 then you will be over medicated in 4/6 weeks too. Too much T3 can have similar side effects as too little. Not everyone will be a hot sweaty, jittery, anxious, raised hr or bp to be over medicated I wasn't, but know being too fatigued and unable to function properly was likely me being over medicated in the past. It's very difficult for even someone being on T3 10 years to 100% know.

Medichecks have 20% off the advance thyroid blood test till midnight. This test covers everything. Antibodies, Tsh, ft4, ft3, ferritin, vit d folate, active b12 and crp. Likely you've used them before but just mentioning because of the 20% discount.

PinkSkittles profile image
PinkSkittles in reply to sparkly

Thank you Im already doing that. Was just asking for personal experiences.

PinkSkittles profile image
PinkSkittles in reply to PinkSkittles

Finger prick test ordered!

Lovecake profile image
Lovecake

Short answer - yes

I added 10mcg T3 and was asked to reduce my Levo by 25mcg per day.

Felt ok, then after a while was struggling and my FT4 had dropped too low. (It was around 80% in RR before reduction). I gradually added a teeny bit more Levo. 25mcg extra for 3 days per week. Settled on 5 x 100, 2 x 75

Obviously things have changed over the years. But if my FT4 drops too low then I get bad symptoms inc nasty migraines. I would say probably 70% through both ranges suits me but I haven’t managed that for about 5 years now.

We are all different and the advice above is, as usual, excellent.

PinkSkittles profile image
PinkSkittles in reply to Lovecake

Ooo this is so helpful and interesting thank you so much for replying!How did it make you feel?

So when you say you havent managed to get your ft4 up to 70% does that mean you've felt bad for 5 years?

Also sorry one more question were you taking thyroid hormones because yours were out of range or just not optimal?

Lovecake profile image
Lovecake in reply to PinkSkittles

I have Hashimoto’s. I spent many years (as do many) struggling with everything and not knowing why. I knew nothing about thyroid disease back then. My iron was low, folate below range. TSH 5, literally top of range. My then GP put me on iron tablets and that helped me a bit. Another 2 years on and my TSH was 9.9 FT4 below range. Started on levo. Sent to NHS endo. Found vitD and folate very low. They were optimised and it wasn’t till a few months later I found they had dropped again. My Levo was raised to 100 and then I didn’t feel right. Reduced to 75, felt absolutely terrible. 6 months later I saw a private endo. (Story as above). Felt amazing when first on some T3. It settled. I found this forum and started to learn learn learn.

No, it’s not perfect. I do have days, even a full week when I feel pretty good. Listening to people like Slow Dragon, Dippy Dame et al is very important. It’s worth trying things and giving them time to work. I don’t buy rubbish supplements, I try to avoid soy and dairy. I struggled with gluten free. But we are all different, so it might suit you.

Some people get on well with just levo. They probably won’t be on forums like this, why would they?

When my FT4 drops low I suffer (dreadful fatigue, constipation, bad migraines etc) so I sort it. Slowly. My endo doesn’t think I need more Levo as my TSH is 0.01 I just add a little and eventually they agree with me. I make sure my blood results are not too high by not over doing it with medication. My GP will only agree to a levo increase if the FT4 is dragging along the bottom range, otherwise she goes by the endo.

So it’s trial and error. But if you haven’t tried all the things that have been recommended by SD and DD and others, then I would say please do give them a go.

Have I felt bad for 5 years? No. But I manage my life. I look after my grandsons 2 days a week (not full days) and that is very tiring for anyone getting on for 60. I work part time from home. I don’t go out much, but I try sometimes. I am a home bunny and like my garden. You just do the best you can for you and I’m sure that before the year is out you will notice some improvement. 🙂🧁

PinkSkittles profile image
PinkSkittles in reply to Lovecake

Thank you for sharing

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