How often to increase t3: I started on 6.25 mcg... - Thyroid UK

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How often to increase t3

PinkSkittles profile image
142 Replies

I started on 6.25 mcg of t3 and increased by 6.25 every 5-7 days. I've been on 31.25 mcg for 2 weeks now and feel exactly the same= dreadful. Shall I keep increasing or wait?

I'm also taking 50 mcg of t4.

I'm monitoring and taking iron, b12 and vitamin d. I was also taking selenium but stopped now.

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TiggerMe profile image
TiggerMe

Have you not noticed any increase in temperature, resting heart rate or BP whilst increasing your dose, these are generally good markers for what is going on... you are already on a high dose for someone on combi therapy, do you think you have T3 resistance?

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

I have no idea if I have t3 resistance- how would I know?

I havent tested bp and heart rate and temp. What do I do? And what do I look out for?

TiggerMe profile image
TiggerMe in reply to PinkSkittles

I would have thought going up to this high dose so rapidly would have made most people hyper and feel totally wired as T3 is powerful stuff and many of us on a combi regime only need a small amount of T3 in comparison to T4 (e.g. I take 100mcg T4 5 days a week and 150mcg on 2 along with 15mcg T3)

Have you not checked your BP or heart rate before starting which are often low or high and slow when hypo? Generally hypo's feel cold all the time so if you are now hot and sweaty this is a sign you are over doing it.

What were you on before starting T3?

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

No I dont feel any worse- Im not sweaty. Im still cold alot.

My bp was on the lower side before. Heart rate I dont know.

Before taking t3 I took t4 but it seems like I have a conversion issue so need t3.

TiggerMe profile image
TiggerMe in reply to PinkSkittles

You've gone at it rather hard and fast and could easily have missed your sweet spot, as though T3 is fast acting it takes the body much longer to adjust to the new levels... have you optimised your ferritin, B12, Vit D and folate as these are all essential for conversion

What were your last full thyroid results before adding T3?

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

I followed by thyroid Drs instructions- thats what he told me to do.

If Im taking t3 why do I need to worry about conversion?

TiggerMe profile image
TiggerMe in reply to PinkSkittles

Ah, ok... has he told you to just keep on increasing then until you feel well?

You don't so much but good levels are still needed for good uptake.. why are you still taking some t4?

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

He didnt tell me what to do next. So I thought Id ask here. I'll ask him too.

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.

He 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.

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

Just before adding in t3:

Tsh: 1.01 (0.35-4.94)Ft3: 3.9 (2.4-6)

Ft4: 14.3 (9-19.1)

TiggerMe profile image
TiggerMe in reply to PinkSkittles

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

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

T4:T3 Ratio 3.667 

So your conversion rate was actually pretty good but you needed more T4 not T3, had you tried increasing that and it not worked, generally fT4 needs to be above 75%?

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

I have the conversion DNA mutation and when I tried metavive I got much much worse as I increased the dose, suggesting that my t4 was converting into rt3 (annoyingly I didnt check it though).

My rt3 increased from 15 to 16 when I took 50 mcg of t4 and I my ft3 dropped a little.

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.

TiggerMe profile image
TiggerMe in reply to PinkSkittles

My guidance would be to drop the T3 and try a full replacement dose of T4 which you seemed to be converting well and you just needed to gradually up your dose to find your sweet spot... 50mcg is a starting dose and would be suitable for someone really petit, next step is to increase to 75mcg and wait 8 weeks to test and then possible need to increase in smaller steps.... how much do you weigh?

T3 could make you really unwell

Your Dr doesn't seem to have much of a clue starting you on T3 before optimising your fT4??

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

I weigh 8 stone and Im 5 ft 6 so Im very small.

Im not going to switch to t4 only as I have the conversion DNA mutation and felt much worse taking metavive (which I increased gradually)which has a high t4 ratio.

TiggerMe profile image
TiggerMe in reply to PinkSkittles

Metavive isn't comparable to T4, your figures show you converted well but your T4 dose should have been increased to 75-80mcg and then see where your fT3 level has got to

DippyDame profile image
DippyDame in reply to PinkSkittles

No real need to test rT3 at all...it is the inactive form of T3

If T4 gets too high it starts converting to rT3 instead of T3, this helps keep T3 from getting too high. The rT3 will be metabolised and excreted.

No need to worry about it.... since you are taking T3 and very little T4 then rT3 will not be an issue in any case

greygoose profile image
greygoose in reply to PinkSkittles

I have the conversion DNA mutation and when I tried metavive I got much much worse as I increased the dose, suggesting that my t4 was converting into rt3 (annoyingly I didnt check it though).

Some of your T4 always converts to rT3. that's how it works: roughly 30% converts to T3, 30% to rT3 and the rest disposed of. However, when your FT4 gets to a certain point - and that point is different for everyone - more T4 gets converted to rT3 and less to T3. But rT3 had no direct relationship to the DNA mutation. It is the result of poor conversion not the cause of it.

And it's really a waste of money testing your rT3 because it won't give you any information that you can't get from just testing FT4 and FT3 - that will show you how well you convert. And, looking at your FT4/3, comparing the percentages, you didn't convert very well. The FT3 should be just slightly lower than the FT4 percentage-wise. The gap between the two with your levels was too wide. That said, your FT4 was too low. Most hypos need that at least 75% through the range. So, the question was, would increasing levo raise your FT3 enough to make you well? The odds are that it probably wouldn't.

Oh, and you have increased the dose far too quickly. It's very rare to find a doctor that knows how to dose T3. So, your body hasn't had time to adapt and catch up with the increasing doses, and that's probably why you don't feel any better.

So, if I were you, I'd stick on your present dose for at least six weeks, then see how you feel and retest.

PinkSkittles profile image
PinkSkittles in reply to greygoose

Hello thanks for your reply, someone else replied and said I was converting fine. So not sure who to believe?

greygoose profile image
greygoose in reply to PinkSkittles

Well, what can I say? :D You pays yer money and you takes yer pick. I've just given you my opinion, going on my experience. :)

PinkSkittles profile image
PinkSkittles in reply to greygoose

This is free advice though...I dont know who to believe.

greygoose profile image
greygoose in reply to PinkSkittles

Yeah, well, I didn't mean that literally. It's an expression, that's all.

I understand you don't know who to believe, but it really doesn't matter, does it? Because you're taking T3 anyway, so how well you do or don't convert is irrelevant. :)

PinkSkittles profile image
PinkSkittles in reply to greygoose

Hi greygoose. I wrote to you a few minutes ago with my new thyroid results but you seem to have replied to an old comment. I wondered if maybe you havent seen my most recent reply this morning?

greygoose profile image
greygoose in reply to PinkSkittles

Oh, didn't look at the date! lol

This thread is now such a mess that it's impossible to find anything. And clicking on the alert doesn't take you to the right response - hence why I replied to an old comment, which I thought was the latest. Sorry about that. I'll try and find the right one.

PinkSkittles profile image
PinkSkittles in reply to greygoose

I know! Why arent the replies in chronolical order- is that normal?

The same happens to me- when I get an alert it takes me to someone else's old comment.

greygoose profile image
greygoose in reply to PinkSkittles

Because people are commenting out of order. It happens all the time, and we're all guilty of it. But there comes a time when we just have to start a new thread. And I would advise you to do that with your new results, rather than tacking them on here. Because I can't find them! And I doubt many people will look at this old thread now - probably wouldn't understand it all if they did. :(

PinkSkittles profile image
PinkSkittles in reply to greygoose

Okay I'll write a new post.

Here are my new results again.

9am, no food

Last t3 dose about 18 hrs before

Been on 31.25 mcg for 3 weeks now

Results
greygoose profile image
greygoose in reply to PinkSkittles

Well, your FT3 is right at the top of the range. And as you left 18 hours instead of 12, that's a false 'low'. It's really higher than that. So, unless you have Hashi's or resistance to thyroid hormone, you're probably over-medicated.

PinkSkittles profile image
PinkSkittles in reply to greygoose

Hello greygoose thanks for your reply.I have raised TPO antibodies but my ft3, ft4 and tsh were never out of range so I didn't have clinical hyppthyroidism. They weren't optimal though, so I started thyroid hormones to see if my symptoms were caused by my thyroid.

What about the scenario where some people feel better when ft3 is slightly over the range? How would that fit in with this context?

greygoose profile image
greygoose in reply to PinkSkittles

People that feel better when their FT3 is slightly over-range when they have some degree of thyroid hormone resistance. They need high doses taken all in one go - not spread out - to flood the receptors so that at least some T3 gets into the cells. We don't know if you have that, and there's no test that can tell us, except that FT3 will be high in the blood, and TSH low, but the person still has hypo symptoms. It's found through trial and error. It could be your case, but at this point we cannot know.

On the other hand, given that you have Hashi's, your high level could be due to a Hashi's 'hyper' swing. Levels do fluctuate a lot with Hashi's. So, what it all comes down to is how you feel.

But, in your case, it's difficult to use your symptoms as a guide because you increased your dose far too quickly, which would in itself cause symptoms. And, my personel view is that you tested far too soon. It would have been better to wait six weeks on that dose and then test according to protocol - which you didn't do, either. So, it's all a bit of a mess, really, and very difficult - if not impossible - to draw any conclusions.

PinkSkittles profile image
PinkSkittles in reply to greygoose

I've tested based on suggestions from this forum to make sure that I wasn't over medicated they said. So its not a mess- I was following advice to make sure that my apparent fast t3 increases haven't made my ft3 too high.

I'm going to test after 6-8 weeks too.

Re the hashimotos hyper swing- you can disregard that being an issue, Ive been getting my thyroid hormones tested regularly for years and that has never happened. They have always stayed consistent.

PinkSkittles profile image
PinkSkittles in reply to PinkSkittles

So do you think I should just wait for 6 weeks in total of being on 31.25 mcg and see how my ft3 settles after then?

greygoose profile image
greygoose in reply to PinkSkittles

Yes, I know it was suggested on her that you should test now. I didn't agree but didn't want to say anything and cause even more heated discussion.

So, you see, it's saying that you have made your FT3 too high. But where does that get you. The reason you need to wait six weeks is to give the T3 time to start getting into the cells, which doesn't happen instantly. The dose that you take in the morning can float around in the blood for days before it gets into the cells. And, the more that gets into the cells the less there is in the blood.

During the time one is hypo, with not enough T3 to go round all the millions of cells in your body, the body switches certain receptors off so that the most important organs can get as much as possible, like the heart and the lungs. Before it will switch those receptors on again, and allow the T3 into the blood, it needs to be confident that the supply is steady and won't suddenly dry up again. That takes time. Which is one of the reasons we need to wait the full six weeks. After just two weeks, the body hasn't had time to reopen those receptors so there will be more T3 in the blood than there would be after six weeks. Which is why I say that you can't really conclude anything much from that test.

Yes, I do think you should wait at least six weeks in total from starting on 31.25 mcg T3. It'll be interesting to see the results.

But, I really cannot reply any more on this thread because it's getting more and more difficult to track down your posts. The alert system is just not working anymore. :)

PinkSkittles profile image
PinkSkittles in reply to greygoose

Okay shall we continue this discussion on my new post?

If so I will copy and paste the below question there:

So just to clarify:

I'm getting conflicting opinions from your reply- initially you replied today saying I am overmedicated, but now you are saying you think I need to wait 6 weeks for my ft3 to settle because it might be floating around in the blood and not in the cells, implying that I'm not overmedicated?

PinkSkittles profile image
PinkSkittles in reply to greygoose

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

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

T4:T3 Ratio 3.667 

So your conversion rate was actually pretty good but you needed more T4 not T3, had you tried increasing that and it not worked, generally fT4 needs to be above 75%?"

greygoose profile image
greygoose in reply to PinkSkittles

Yes, I read that. That's why I replied. That response was assuming that a ratio of 3.667 was good. I'm not convinced it is. I go by the percentages, that's what I learnt to do from many, many hours of reading. The FT3 should only be slightly lower than the FT4, with your results, the gap is too wide. Which means that to get enough T3 from conversion of T4, your FT4 would have to be right up at the top of the range. And, not only might that make conversion worse (because it starts converting to more rT3 than T3), but it's not a good thing to have high FT4 long-term. You did the right thing by adding in T3, it's just that you've increased it too fast - or your doctor has. It's usually recommented to increase by 5 mcg every two weeks minimum. Longer as you get closer to your optimal dose, to avoid missing your sweet spot.

T3 has a shorter half-life than T4, and therefore works faster, it's true. But it is not instantanious. The body still needs time to adapt.

PinkSkittles profile image
PinkSkittles in reply to greygoose

Thank you for your reply. When I added in t4 my ft3 dropped- not sure if that's relevant.

I feel like Ive been chastised for increasing by 5-7 days. I was only going by what the thyroid dr told me to do.

My Drs instructions only went up to 30 mcg (31.25 mcg in my case as I'm taking a different brand). So I'll stop and wait now and retest in 4 weeks. I expect that is going to be his advice too when I hear back from him.

greygoose profile image
greygoose in reply to PinkSkittles

Nobody is chastising you. We just want to stop you before you go too far. Because then, you'd have to stop everything and go back to the beginning again. And that would be a shame. As I said before, when someone complained I was being mean to her, it's like seeing a toddler about to pour boiling water over herself. One's instinct is to scream 'stop!'. The toddler cries because she doesn't understand and thinks you're cross with her, but at least she won't end up in hospital. :)

We know that you were only doing as your doctor said, and it's the doctor we're annoyed with, not you. His instructions were incomplete, dangerous and completely wrong. But, as I said, it's rare to find a doctor that knows how to dose T3 because they don't really know what it is. And, I'm not exaggerating, there! We're just trying to explain how to do it safely. And why you need to.

PinkSkittles profile image
PinkSkittles in reply to greygoose

TiggerMe ^^^^

PinkSkittles profile image
PinkSkittles in reply to greygoose

DippyDame ^^^^

greygoose profile image
greygoose in reply to PinkSkittles

I wouldn't have called those chastisements, just warnings, that's all. You have to take into account how passionate we are about this subject. We know the suffering it can cause when it's treated wrongly. We want to save others from that suffering if we possibly can, and sometimes we get a bit... over zealous, let's say. But no-one deliberately tries to wound. Wait until you've been round here for a while, reading other people's posts, you'll understand the basic vibe. :)

PinkSkittles profile image
PinkSkittles in reply to greygoose

Hi me again! I just want to confirm that you definitely think I have a conversion issue? A few other people have looked at my results and say that I dont, so I dont know who to believe....and also Im confused as to why there is a difference of opinion.

PinkSkittles profile image
PinkSkittles in reply to greygoose

Re what to do next- Im going to wait for another 4 weeks and retest. I will have been on 31.25 mcg for 6 weeks at that point.

Can you PM me with the name of a dr who you suggest is good at dosing T3?

greygoose profile image
greygoose in reply to PinkSkittles

Sorry, I don't live in the UK, so don't know any doctors. :)

PinkSkittles profile image
PinkSkittles in reply to greygoose

Oh are you in America? America is fine- we can video call. Do you know any in America?

My Dr isnt in England where I live, he is in Ireland- it makes no difference.

greygoose profile image
greygoose in reply to PinkSkittles

No, I'm in France. And I only know one doctor that knows anything about thyroid, and he's not taking any new patients right now.

PinkSkittles profile image
PinkSkittles in reply to greygoose

Okay. Please could you PM me the name of the french dr? I'd like to keep a record of his name.

PinkSkittles profile image
PinkSkittles in reply to greygoose

Hi I just got my thyroid results back as a couple of people suggested doing them now as well as after being on 31.25 mcg for 6 weeks. Here are my results (see screenshot)

-9am no food

-Last t3 about 18 hours before

Thyroid results
PinkSkittles profile image
PinkSkittles in reply to PinkSkittles

greygoose ^^

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

Someone else said that my t3 dose isnt high relative to my t4 dose and I can still go higher.

"As a rule of thumb, I use 15mcg T4 is equivalent to 5mcg T3, i.e. a ratio of 3:1. Not the ratio of 5:1 usually quoted. I read the 3:1 ratio in research somewhere but have no idea where. Using 3:1, this means your 50mcg T4 is equivalent to approximation 17mcg T3. 17 + 31.25 = 48.25mcg T3. If one have any thyroid fuction left, this may be sufficient T3. If no thyroid function left, it is unlikely to be enough as at least 60mcg is usually needed. This may be the reason you don't feel much different."

TiggerMe profile image
TiggerMe in reply to PinkSkittles

Have you had a full thyroidectomy?

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

No

greygoose profile image
greygoose in reply to PinkSkittles

Well, that's all theory, isn't it. Doesn't mean it works out that way in practice because there are too many variables. And, it's irrelevant, anyway. The only way to find out if you're on the right dose is by how you feel. And to get to that feeling of wellness you have to start low and increase slowly. And that goes for all hormones, not just T3. I've been on quite a few: progesterone, DHEA, HC, HGH... as well as T4 and T3. And with all of them, you have to start with a low dose and increase slowly until you feel you've reached your sweet spot.

With T3 that means starting on 5/6.25 mcg, and increasing by 5/6.25 mcg every two weeks until you get to 20/25 mcg - if you need to go that far, not everybody does. Then you hold that dose for six weeks and retest. After that, it's best to wait longer between increases so that you don't over-shoot your sweet-spot - which is easily done. It takes longer in the short-term but in the long-term it's well worth it. :)

DippyDame profile image
DippyDame in reply to PinkSkittles

Far too soon to consider Thyroid Hormone Resistance....highly unlikely anyway.*

DippyDame profile image
DippyDame in reply to TiggerMe

I would say it's far too soon to be thinking along the lines of a form Thyroid Hormone Resistance, which is rare. And we don't know enough about her thyroid journey so far which appears to be rather chaotic.

We don't know how she arrived at her current dose.

I absolutely agree that a knowledge of signs and symptoms of overmedication is essential...hand tremors are important too.

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Not chaotic no. Just following my thyroid drs instructions.

DippyDame profile image
DippyDame in reply to PinkSkittles

OK.....but .increase is still too fast and dosing is both wrong and chaotic I'm afraid

Doctor's thyroid knowledge is often poor, that's why so many patients arrive here

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Im working with a private thyroid dr. Thats what he does. I followed his advice

FancyPants54 profile image
FancyPants54 in reply to PinkSkittles

I'm afraid he was still wrong. They usually are. Your journey has been chaotic. You went too far, too fast. I've been there and done it. It's horrible.

Generally we would do the 6.25mcg increases every couple of weeks if we felt OK and then hold on 1 full 25mcg tablet for 6-8 weeks to let it settle and then test. But you scooted over the top of that and now you could be overwhelming your body with too much too soon. I also have the genetic defect from one parent.

I think you need to hold now and test in 6-8 weeks time. You need to know what your body is doing and whether you need to reduce the T3 and add more T4 or hold the T4 and increase the T3. When I'm over medicated I feel dreadful. Just as if I'm not taking any medication at all. I'm never cold though, never was. I'm always too warm.

I use temperature taken mid morning and mid afternoon, sometimes evening too to watch what's happening. I also use pulse rate, but I have a heart arrhythmia so that's harder for me than for most. But I can spot trends with it.

Right now I'd hold for the allotted time and retest and then share the results for comment. Time may well improve things for you anyway. I always feel horrible in weeks 2 and 3 of any dose change, up or down.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

Can I ask a few questions?

- what do you look for with your temps? And what thermometer? Is there a guide?

-how did he mess you up?

-in what way do you feel dreadful when overmedicated?

FancyPants54 profile image
FancyPants54 in reply to PinkSkittles

Taking T3 can make our temp go over 37c and that's not advisable. And lack of T3 can cause it to drop too low. So I'm looking for a nice level of around 36.7-8. I use a digital under the tongue thermometer from Boots.

My endo started me back on T3 10mcg a day. It should have been 5mcg. Then he told me to increase too fast. I tried it. And I felt horrible.

I feel exactly like I feel when under medicated when I'm over medicated. Miserable, tired but not sleepy, very anxious, shaky. My HR rises. I sweat, but I'm a hot person who has always sweated easily so not sure if this sweating is just my thing. My skin is dry and my muscles are weak. My feet and ankles and now lower legs will swell and I have a general problem emptying my bladder. If I hit a good spot I pee all that fluid out very quickly.

At first I felt that I could not be over medicated because my numbers were not necessarily high at all. But as soon as I reduced the problems would subside. I'm left with the question of why I feel these symptoms with blood results that are far from optimal. It could be th arrhythmia I live with messing me around or perhaps my adrenal glands. It's hard to tell.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

Thank you for explaining. I'll do the temps.

Ive not felt anxious, shakey or any heart symptoms.

FancyPants54 profile image
FancyPants54 in reply to PinkSkittles

I should also have said that I too work with a private endo. He's lovely. And he's very keen on T3. But when I first went onto T3 with him, I was so tired and exhausted by years of struggle to sort myself out with this illness that I decided to do exactly as he said (even though I knew part of it was wrong). I wanted someone else to take responsibility for a change. Big mistake. He really messed me up.

I now use him for the prescriptions I need and to keep me on the top of my vitamins, minerals and other health issues. He's good at that and a great sounding board. But I won't be dosing to his suggestions every again. We are all different and we have to live with the consequences.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

I will come back to both of your replies later and reply properly. Thank you for your suggestions and thoughts.

DippyDame profile image
DippyDame

Goodness  PinkSkittles ....you need to slow down and learn more about using T3 which is a potent hormone and needs to be used with respect and understanding.

You arrived here 28 days ago without providing any background details, you told us/ me then that you were not looking for advice....but here goes anyway!.

We increase T3 by 5 or 6.25mcg, every 2 weeks....or lower and more slowly for some...until we reach 20/25mcg. We then test and procede according to the results

You are increasing T3 far too fast and your body will be struggling to cope.

I usually say that increasing T3 too high/fast is like putting high octane racing fuel in an old Mini!!

T3 must be increased low and slow.

It is not the panacea of all ills!

We need to carefully record all symptoms and symptom changes as we titrate the hormone to avoid overmedication

It took me about 2 years to first discover my problem (medics hadn't a clue) then to move from T4 to T4/T3 and then finally to my therapeutic dose of T3-only

I need high dose T3-only to function (since 7 years) because I have a form of Thyroid Hormone Resistance. My dose is now 137.5mcg....max dose was 212mcg

That dose of T3 would be very dangerous without RTH! So, I've done the hard yards and the research and know the dangers

There is no quick fix! I understand how you feel, I reached a point where I could barely function and it's hellish!!

Slow down, accept this wil take time and keep going..

To help you properly you really need to complete your bio for us

For instance..

Post test results

when was hypothyroidism diagnosed?

what was your highest mono T4 dose?

based on what test results did you add T3?

are you in the care of an endo?

is your T3 prescribed?

do you have impaired T4 to T3 conversion?

do you have tnyroid autoimmune disease/ Hashimoto's?

do you know the symptoms of overmedication?

....and more

You need a plan!

So, to respond to your question...

You have reached 50mcg T4 + 31.25mcg T3, given your rate of increase I'd suggest you hold that dose for another 4 weeks ( 6 in total) then test....at least TSH, FT4 and FT3.

The results will point the way forward....post them here for advice.

We're all here to help...there are lots of knowledgeable and experienced members here who willingly give up their time to share that experience and knowledge.

Feel free to ask..

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Im following my thyroid drs instructions- [ redacted doctor name ] He is a thyroid Dr and told me to increase at this speed.

helvella profile image
helvellaAdministratorThyroid UK in reply to PinkSkittles

Please do not post the names of doctors on the forum. This is against the forum guidelines. I have edited your reply to remove the name.

Forum Posting Guidelines

healthunlocked.com/thyroidu...

Trying to merge instructions from a doctor and general assistance and suggestions from members of the forum can make for some awkward situations. Obviously a doctor who you have consulted will very likely have much more to go on than members here. Therefore conflicted advice is very often the result.

This isn't in any way meaning you shouldn't ask things. But be prepared to try to see why things said here do not always match what your doctor has said.

RedApple profile image
RedAppleAdministrator in reply to PinkSkittles

'He is a thyroid Dr and told me to increase at this speed.'

This is very unusual advice from anyone who claims to be a thyroid doctor. Is this a qualified private doctor in the UK, and is he also prescribing your thyroid medications?

PinkSkittles profile image
PinkSkittles in reply to RedApple

Yes in the uk and yes he prescribes but i got mine myself as its cheaper. He was a Gp and now a thyroid Dr

RedApple profile image
RedAppleAdministrator in reply to PinkSkittles

It's about getting the right balance of T4 and T3 that works for you as an individual.

You need to discuss how you're feeling on this medication regime with this private doctor. You are paying him to get you well, and if that's not happening, then he needs to sort it out. Make sure you get appropriate full thyroid blood tests to see where your levels are before you change anything. I strongly suspect your FT3 will be far too high on your current T3 dose.

PinkSkittles profile image
PinkSkittles in reply to RedApple

It will be interesting to see what my ft3 is when I retest! I'll retest in 4 weeks time.You say that if Im not feeling well yet I should tell the private dr. So you think I should be feeling better after 2 weeks on 31.25 mcg of t3?

RedApple profile image
RedAppleAdministrator in reply to PinkSkittles

'So you think I should be feeling better after 2 weeks on 31.25 mcg of t3?'

That is simply too much too soon. 31.25 mcg of t3 is a high dose, especially alongside 50mcg T4. Slowly but surely for thyroid medication dose increases, otherwise you miss your 'sweet spot'. Anyone calling himself a thyroid doctor should know this, and if he doesn't, then you are wasting your money in my opinion.

If I were you, I would not wait for another 4 weeks before testing. If your dose is already too high, you need to know now, not suffer for another four weeks.

PinkSkittles profile image
PinkSkittles in reply to RedApple

No I meant- do you think I should be feeling better now because you said if I dont feel better I should be contacting my thyroid dr to work out why?

I can retest my hormones now. Interestingly you are the only one in the replies to suggest it though.

The only thing is there wont be any AM blood test appts available next week. They will all be weeks away. What would you do in that instance? Do a finger prick test?

RedApple profile image
RedAppleAdministrator in reply to PinkSkittles

Yes, definitely do your own fingerprick test. If you order one today, you'll hopefully get it tomorrow or Monday, then can do the test first thing Monday or Tuesday morning and get it in the post before mid day.

Once you have the test numbers, you will be in a better position to see what's happening. And then you can also discuss things with your thyroid doctor instead of blindly following what seems to us to be bad advise.

PinkSkittles profile image
PinkSkittles in reply to RedApple

Okay so finger prick tests are okay....

PinkSkittles profile image
PinkSkittles in reply to RedApple

Hi I just got my thyroid results back as per your suggestion above.

-9am before eating

-Last dose of T3 about 18 hours before

Photo of test results
PinkSkittles profile image
PinkSkittles in reply to PinkSkittles

RedApple regarding my most recent results above ^^ just to note I have been on 31.25 mcg for 3 weeks now. It wouldn't let me edit to say that.

RedApple profile image
RedAppleAdministrator in reply to PinkSkittles

Those results very definitely indicate that you are overmedicated, which will likely be the cause of your symptoms. If these were my results, I would drop my T3 dose down quite a bit, perhaps to just 20mcg a day, but not change the levothyroxine dose. Then give it a few days to settle before assessing symptoms.

PinkSkittles profile image
PinkSkittles in reply to RedApple

Hi redapple thank you for your reply.

When you say cause of my symptoms- what symptoms are you referring to?

And overmedicated because if it tested after 12 hrs of taking t3 it could have been over range?

What about the scenario where people feel better when ft3 is a little over range?

DippyDame profile image
DippyDame in reply to PinkSkittles

I don't care who he is.....delete his name TUK/ HU do not allow named doctors on the open forum as far as I know

Tagging helvella who may wish to explain protocol further. Thanks helvella!

My opinion and that of TiggerMe is that you are being wrongly treated.....and it doesn't seem to be helping.

We are not medically qualified so cannot tell you what to do. We can only advise based on our (long) lived experience of thyroid disease...which most medics do not have!

You now need to decide whether to listen to us or to follow this medics advice.

Best of luck....feel free to ask as many questions as are giving you concern

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Thank you for your advice.

I have researched t3 and I know what hyperthyroid signs to look out for if you are taking too much. I'm not rushing and I'm not chaotic. Im methodical.

DippyDame profile image
DippyDame in reply to PinkSkittles

Actually it's overmedication you need to monitor for....that is not the same as being hyperthyroid

I didn't say you are chaotic, I said your dosing/ treatment is....different thing.

Anyway....it's your health and your decision.

Take care.

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Okay sorry overmedication. I dont feel any worse since taking t3.

PinkSkittles profile image
PinkSkittles in reply to DippyDame

My plan was to wait another 4 weeks and retest everything, like you've suggested. I was just wondering if I could increase sooner but it appears not from the replies here.

Brightness14 profile image
Brightness14 in reply to PinkSkittles

Good Luck Methodical

PinkSkittles profile image
PinkSkittles in reply to Brightness14

Thank you!

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Hi a few members suggest I test my thyroid now as well as for waiting after 6 weeks of being on 31.25 mcg of t3. I have been on 31.25 mcg for 3 weeks now.

See results attached.

-9am, no food

-last t3 dose about 18 hours before

Thyroid results
DippyDame profile image
DippyDame in reply to PinkSkittles

Well your results come as no surprise,

You have been taking 50mcg T4 + 31.25mcg T3 for 3 weeks

A tad too early to achieve an accurate test result...

However what this test has shown is that you have misjudged the dose of T3 you need.

We need to find the lowest effective dose...not the highest dose we can tolerate.

You increased T3 far too quickly as we explained earlier.....which can cause us to miss the sweet spot

You have tested 2 or 3 weeks after starting that dose, and...

you tested 18 hours after your T3 dose.

Your FT3 is at the top of the range and this is very likely a false low.....

A new dose takes at least 6 weeks to settle into the system

The gap between taking dose and testing FT3 should be 12 hours

It all points to overmedication, perhaps also wrong medication, which is unwise....I'm sure you will understand why, given all the research you tell us you have been doing.

You could reduce your T3 dose.......say by 5mcg initially. Wait 6 weeks and test again

Only change one thing at a time otherwise you won't be able to tell what is doing what!

I'm afraid it is now going to take some time and several tests to find your therapeutic dose.

I suspect you may eventually need more T4 and less T3

Or....you may prefer to consult your GP, thyroid specialist or endo because right now your post is going round in circles and getting nowhere ....like a spurtle (stirring stick) in a porage pot!

As I said before I'm not sure I can add anything to what I've already said.

Best of luck

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Thanks for your reply.

What about the scenario where some people feel better when ft3 is over the range?

PinkSkittles profile image
PinkSkittles in reply to PinkSkittles

-why do my results point to over medication and not optimal?-what would you do next?

DippyDame profile image
DippyDame in reply to PinkSkittles

If your results were optimal you would feel well with no symptoms of hypothyroidism.

PinkSkittles profile image
PinkSkittles in reply to DippyDame

So after 3 weeks of being on 31.25 mcg you think I should be feeling better with ft3 at 6.8?

I've read though that it can take months to feel okay once you get your ft3 to top of the range ie there can be a delay.

DippyDame profile image
DippyDame in reply to PinkSkittles

People usually have a form of thyroid hormone resistance if they need FT3 over range....it is rare and does not appear to affect you.

You can find out more by reading reliable info using your search engine eg Google.

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Okay -are you saying you dont think I have thyroid resistance? And if so how do you know?

PinkSkittles profile image
PinkSkittles

Anyhow Im sticking to t3 now (plus t4). Im not going to stop it and go back to t4 only.

TiggerMe profile image
TiggerMe

The ratio might be high but the quantity might not... they don't issue quantities to my knowledge else it would be prescription only? Have you any results whilst on metavive?

I can only really go on the results you have given based on 50mcg T4 and this showed you needed an increase

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

[edited] I worked with another private thyroid dr who told me to take metavive.

Stupidly I didnt test ft3, ft4 and rt3 when I got worse on metavive. I just stopped it. Regret doing that now!

Im going with t3 and t4 now.

TiggerMe profile image
TiggerMe in reply to PinkSkittles

So you were on Metavive Pro? This is the one that has to come via a professional... I'd be interested to know the levels and ratio's if you still have them

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

I cant remember the name but I bought it myself. I'll get a screenshot and post it below.

PinkSkittles profile image
PinkSkittles in reply to PinkSkittles

The writing on it is from the Thyroid Dr, not mine.

[edited to remove image]

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

My photo had to be deleted as its not allowed. If you want it i can pm it

TiggerMe profile image
TiggerMe in reply to PinkSkittles

Ah, sorry missed that, the limitation with pm's is that you can't add images 🙄

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

Will pm you

TiggerMe profile image
TiggerMe in reply to PinkSkittles

So you stopped taking that and swapped to 50mcg Levo?

PinkSkittles profile image
PinkSkittles in reply to TiggerMe

No I took metavive in around 2018. And have taken no thyroid hormones since.

FancyPants54 profile image
FancyPants54

I don't know about Metavive, but NDT has a high ratio of T3 to T4. You have that the wrong way around.

Espeegee profile image
Espeegee

I'm left wondering why you have posted here? Lots of experienced forumers who I would trust far more than many GPs. Most endocrinologists are diabetic specialists not thyroid experts. A GP who retires and then trades as a thyroid expert would to me raise a bit of a red flag. Your money your choice of course.

PinkSkittles profile image
PinkSkittles in reply to Espeegee

What an odd thing to say- why would I post here?! Im wanting advice and to learn obviously!

Er because he's a thyroid dr- that's his specialism! He was recommended from a thyroid facebook group. He's not an endo.

greygoose profile image
greygoose in reply to PinkSkittles

Be very, very wary of thyroid Facebook groups. They rarely know as much as they claim to and often give some very strange advice.

FancyPants54 profile image
FancyPants54

I don't care about Metavive, I've never used it and am unlikely too. I told you that NDT is T3 rich, not T4 rich, which you said it was. NDT is monitored for strength like Levothyroxine is. Metavive is sold as a "supplement" so we don't know how reliable the strength is longer term. But that's not my concern. My concern is that you thought NDT was T4 rich.

I am having to add T4 to my NDT now because my level had dropped too far and I don't do well on too low a level of T4.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

NDT is t4 dominant not t3

PinkSkittles profile image
PinkSkittles in reply to PinkSkittles

"Armour Thyroid contains both thyroxine (T4) and tri-iodothyronine (T3) extracted from the thyroid gland of pigs. One grain, about 60 mg, of desiccated pig thyroid extract contains about 38mcg of T4 and 9mcg of T3, a ratio of around 4 to 1."

FancyPants54 profile image
FancyPants54 in reply to PinkSkittles

This is what I take. I do know what's in it.

DippyDame profile image
DippyDame in reply to PinkSkittles

One grain, about 60 mg, of desiccated pig thyroid extract contains about 38mcg of T4 and 9mcg of T3.

This refers to NDT not glandulars like Metavive which you say you have been taking

You don't seem to know what you are taking or the difference between NDT and glandulars, or how thyroid function/ hormones actually work.

This information is available here but you don't seem prepared to take forum advice on board.

Yet you persist in upholding what you say is the advice of "a thyroid doctor" and "not an endo".

His advice did not appear sound and does not appear to be helping

Thyroid specialists are endocrinologists, they study the endocrine system including the thyroid gland

I'm concerned to read some of your responses which are misleading and potentially problematic for other concerned members.

Goodness knows what you really want to be told but it doesn't seem to be what the experienced members here are offering.

We must be responsible when we comment or offer advice and ensure that advice is as accurate as possible.

I suggest some of your comments miss that mark!

I hope you find the help you need.

PinkSkittles profile image
PinkSkittles in reply to DippyDame

Gosh you are rude and condescending and are making so many assumptions about me.

I do know what I was taking and I do know how thyroid hormones work.

My thyroid dr isnt an Endocrinologist. He is a GP who now specialises in thyroid hormones.

Where have I said I wont take advice on board? All I said was this is what I did based on my thyroid dr and I asked what I should do next.

Please dont be so harsh.

DippyDame profile image
DippyDame in reply to PinkSkittles

I look forward to hearing that this "thyroid doctor" has helped you recover fully!

PinkSkittles profile image
PinkSkittles in reply to DippyDame

That's passive aggressive. Why are you being so unkind with your responses?

FancyPants54 profile image
FancyPants54 in reply to PinkSkittles

Every time someone made a suggestion of what to do next, you came back very sharply about why you would not be doing that and why you would be following the guidance of this specialist GP. Well if that's the case why did you ask for alternative suggestions?

The typed word is not as easy to pick up vibes from as a face to face conversation. But I think you are very sharp and aggressive in your responses. And you have proved that here with DippyDame who has years of experience and advice to share and has not had a cross word before.

You have also made me feel short with you and wondering why you came to ask for help and then ignored it all.

I've finally realised that what you have been disagreeing with me about - ratio of T4 to T3 in NDT is because you haven't taken into account the strength of the T3 hormone. You are looking at the straight measurements of how much T4 and how much T3 is in a grain. But we can't look at it like that as T3 is so much more powerful than T4 and it depends how well we convert, how well our cells can receive the T3 and how our body reacts to the NDT T3 component.

So I think there are crossed wires going on, plus your insistence that your doctor is right even though you came to ask for help and that's causing people to feel you are being very sharp.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

Ah no I haven't said I wouldn't take on board any suggestions from here. I also haven't said my Dr was right. All I said was that I followed his instructions.

PinkSkittles profile image
PinkSkittles in reply to PinkSkittles

Ive looked through my replies and I cant see where I rejected advice about increasing vs not increasing.

At no point did I say id carry on increasing or do it fast.

The GP didnt tell me what to do after getting to 31.25 mcg (but ive asked him). So when you say I said I would continue with my GP's advice- well he hasnt given me any advice yet. Thats why Ive asked here.

FancyPants54 profile image
FancyPants54 in reply to PinkSkittles

NDT is T3 dominant compared to our own thyroid output. So it is referred to as T3 dominant.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

You said it has a high ratio of t3 to t4. It doesn't. It has a higher ratio of t4 to t3.

FancyPants54 profile image
FancyPants54 in reply to PinkSkittles

One of us is misunderstanding some terminology here. I'm not sure which of us it is. But I know that compared to human thyroid secretion, NDT has a higher quantity of T3 in it. This can cause problems. But I'm not prepared to argue the case anymore.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

Its the terminology that you used- it didn't make sense.

PinkSkittles profile image
PinkSkittles in reply to FancyPants54

Okay now that makes sense.

sparkly profile image
sparkly

Hi Pinkskittles, what symptoms were you still suffering with when you decided to add t3 to your t4? I did read one of your posts about depression and fatigue, what other symptoms are you still having? Depression and fatigue can be caused by many other factors other than thyroid.Going off your bloods when just on t4 it looks like you were converting and a rise in t4 could have been all that was needed to raise your ft4 that would raise ft3 but I might have missed other information about that.

I know it is all easy to rush things but the advice given on here is invaluable by so many members.

I agree with others that reaching over 30mcg in 2 weeks is too fast. I myself have been guilty of upping and downing t3 to quickly when other factors have been the reason for me not feeling how I should.

I'm complex, on t3 only, one single dose so i know how complicated it is.

I'd not wait to test, you need to do it now. If ft3 over range and you not having any symptom relief then I'd reduce the t3 and start slowly again

PinkSkittles profile image
PinkSkittles in reply to sparkly

Hi thanks for your reply.

I didnt increase up to 31.25 mcg in 2 weeks. It took about 4 weeks as I increased by 6.25 mcg every 5-7 days.

Oh yes I've been researching for years and I know there are many causes of depression and chronic fatigue- thyroid being one of them, hence why Im taking thyroid hormones. You've got to rule out everything until you find the cause.

Okay I'll retest ft3 now.

Symptoms were also brain fog, irritable, moody, feeling drugged/hungover especially in the morning, executive funtion difficulties, cant handle stress, feel extremely overwhelmed, internal tremors occasionally, getting cold very easily, red hot achey knees when I bend them, aching all down my legs randomly (not always after walking, every few weeks), cant work, heavy aching eyes.

sparkly profile image
sparkly in reply to PinkSkittles

Sorry I don't know your age but if the age of peri/ menopause then sex hormones can cause some of these symptoms. They played havoc for me and massive issues for taking my T3.

PinkSkittles profile image
PinkSkittles in reply to sparkly

I've had all these symptoms since I was 30 and many pre 30s too but some where milder then. I'm now 39. Ive also started taking progesterone but that's another story!

sparkly profile image
sparkly in reply to PinkSkittles

I've been on hrt 7/8 years but 2 years ago i was prescribed testosterone and things that I thought were down to my thyroid like brain fog, aching joints, lack of energy and low moods were gone. It's very easy to blame a condition you already have when for women of that age sex hormones are throwing their two pence worth into the pot too.Sex hormones and thyroid hormones can interfere with each other and as symptoms can over lap you don't know which is causing what.

Your not on full hrt but taking progesterone which say to me you have a hunch sex hormones are causing some kind of issue for you. It's so frustrating I know but don't rush things, listen to your body and some great advice from here

PinkSkittles profile image
PinkSkittles in reply to sparkly

Hi thanks for your reply. Was testosterone based on testing? When I did the DUTCH test in 2019 (I felt exactly the same now as I did then) my testosterone wasnt low.

sparkly profile image
sparkly in reply to PinkSkittles

Symptoms and testing. My menopause specialist went off my Symptoms and only looked at my results after saying yes to prescribing it.

PinkSkittles profile image
PinkSkittles in reply to sparkly

Ah okay. So your testosterone was low?

sparkly profile image
sparkly in reply to PinkSkittles

Lowish, 0.5 (<1.6)

PinkSkittles profile image
PinkSkittles in reply to sparkly

How do you know if you need to take progesterone then if its not low and its in range?

sparkly profile image
sparkly in reply to PinkSkittles

I'm sorry I don't know that answer. Progesterone is hardly ever tested by nhs when having sex hormones tested which is wrong. What led you to start progesterone only? I know it is used by ladies who suffer with PMDD or endometriosis to try relieve symptoms.

For perimenopause/menopause it is used alongside oestrogen and if needed and if you're lucky ky to get prescribed, also testosterone.

PinkSkittles profile image
PinkSkittles in reply to sparkly

Sorry I meant testosterone!

sparkly profile image
sparkly in reply to PinkSkittles

Symptoms! It's only usually prescribed to women on hrt, sadly it doesn't work for everyone.

PinkSkittles profile image
PinkSkittles in reply to sparkly

Its confusing as the symptoms could be from low thyroid, low progesterone, estrogen dominance...

sparkly profile image
sparkly in reply to PinkSkittles

Your just about at that age now for perimenopause issues. Read up as much as you can, download the Balance app by Dr Louise Newson, Join groups.If you suffered when you were younger with hormone/ period issues then this could be the start

PinkSkittles profile image
PinkSkittles in reply to sparkly

I have been and Im in groups!

PinkSkittles profile image
PinkSkittles in reply to sparkly

Hi Ive just got my thyroid test results back after your suggestion.

The test was done at 9am, no food, last dose of t3 about 18 hours before.

Test results
Espeegee profile image
Espeegee

This is a link to an interesting video about RT3 - instagram.com/reel/C3eH5euN...

PinkSkittles profile image
PinkSkittles in reply to Espeegee

Ive had my reverse t3 tested a few times.

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