T4, T4/T3 and T3 only do not help.

[YulianaRossenova]

Hello everyone,

I haven't been online for a long time.

I am still struggling to manage my hypothyroidism.

In the past 10 months I have tried various combinations of T4 alone, T4+T3 and T3 only but I was still hypo.

Now I am trying a T4+T3 combination again, slowly going up.

I reached 106 T4 and 30 T3, and every time I up my dose I feel amazing for 2 days, absolutely symptom-free, and then hypothyroid symptoms hit hard again.

I am OK nutrient and adrenal-wise, so this is not a hindrance for therapy not to work.

I think I convert immediately since I went from T4/T3 (100mcg/18mcg) to T4 (37.5mcg) for 2 months earlier this year and I felt amazing in just 3 days after dropping T3. But this feeling lasted for 2 weeks only, then FT4 level went very high and impaired conversion. But still I was feeling better than now.

For the time being I take 106 T4 and 30 T3. 2 weeks ago I was taking 87.5 T4 and 27 T3 and I felt pretty bad, constant skipped beats (my main hypo symptom which I go by) and real terrible bone and muscle pain. I upped my T4 to 100 and my hypo symptoms stopped completely the same evening and I was symptom-free for 2 days but then all of them returned...

I know you may be incredulous to the fact how quickly I convert Thyroxine but this has happened to me many, many times and I m 1000% sure that it gets converted to T3 immediately, however conversion grinds to a halt when FT4 level goes to high (itself alone and as compared with FT3 level)...

Right now I am aiming at shutting down my thyroid and getting a full replacement dose. It is pretty clear to me already that smaller doses do NOT work.

However, it feels weird that I get to feel so good whenever I increase and then plunge into hypothyroidism again. I am afraid I will never reach my full replacement dose since I never get hyper. It seems to me that even if I am close to switching my thyroid off I will not be able to find MY balance of T4 and T3 dosages and thus I might titrate my doses up endlessly... To no avail... I do think that if I don't have enough T3 to "oppose" T4, to "regulate" FT4 levels and harness them down to enable conversion to FT3, my FT4 will just build up and I will be hypo.

Still I feel tempted to go back to a small dose of T4 only. At least I will be symptom-free for half a month and then be little hypo at a steady level.

With T4 and T3 it just seems like an endless game... constant upping - relief, downturn, upping again - relief, and so on...

I am open to any kind of advice...

[greygoose]

Stop chopping and changing, for a start. Your poor body must be so confused. You don't give any idea of times scales - nor any lab results - but it doesn't sound as if you give anything time to work before you change it again.

It takes at least seven days for an increase in levo to be absorbed, and at least six weeks to feel the full effects. It is physically impossible to instantly convert levo to T3 the moment you take it.

[YulianaRossenova in reply to greygoose]

I have been building up to my current dose for 2 months now. I am definitely going slowly now.

Sometimes I think it is even too slowly.

I am afraid that I will not be able to find the balance between T4 and T3 doses.

Besides, isnt 100 T4 and 30 T3 enough for a full replacement. I am afraid I will never find my full replacement dose.

I was on NDT first. Upped by half a grain every two weeks till I reached this dose. It is equal to 3 grains actually.

[greygoose in reply to YulianaRossenova]

I'm afraid I'm unable to find your present dose, your post is rather confusing - is it 100 T4 and 30 T3? But if you built up to that from zero in two months, then you're increasing far too fast!

You should increase T4 by 25 mcg every six weeks. And T3 by 1/4 grain every two weeks until you hit a full tablet, then hold for six weeks and test.

But, I don't understand why you're building both up at the same time. Why are you taking T3? Because you aren't a good converter? How bad is your conversion? You probably don't need 100 mcg if you can't convert it. Excess unconverted T4 will lead to excess rT3 and make matters worse.

"Besides, isnt 100 T4 and 30 T3 enough for a full replacement. I am afraid I will never find my full replacement dose."

A full replacement dose for whom? For you as an individual? You can't set a limit on it. You need what you need. And, you have to keep going until you get there.

But, no, you won't find your full replacement dose, the way you're going about it. First, you have to decide what you want : T4 + a little T3 or T3 + a little T4 - depending on your own conversion. Trying to imitate the ratio of a healthy person is probably doomed to failure, because healthy people don't have conversion problems. Ratios are for healthy people, not us. You have to take the amount and the ratio that suits you personally.

[YulianaRossenova in reply to greygoose]

I take 106 T4 and 30 T3. I am trying to find the ratio that suits me personally. That is why I switched to synthetics - to be able to play around with T4/T3 ratio.

I have built up T4 from 50 to 106 in 2 months. I think that is not too fast.

I have built up T3 from 6 to 30 mcg in 2 months. Actually today was my first day on 30 mcg T4, I was taking about 27 till yesterday.

So, it is not such a fast increase.

56 mcg of T4 and 20 mcg of T3 in two months.

How about people who feel OK on NDT, which has a set ratio of T4 to T3 of 4.2 to 1?

"First, you have to decide what you want : T4 + a little T3 or T3 + a little T4 - depending on your own conversion."

How can I decide when I don't know what exactly my own conversion rate is. I know I feel very hypo and bad if I don't have T4 in my system. T4 suits me, but then I cannot convert it optimally due to the feedback loop I think, my TSH goes down to 0.5 on just 50 mcg of Thyroxine, I have a pretty well-working thyroid still... just not enough to sustain a healthy life.

I cannot take high doses (higher than 30) of T3, it overstimulates my heart, does not make me hyper.

I know I cannot take little T3 with T4 mainly, I end up being very hypo due to impaired conversion, I have tried that as well.

So, I am increasing both now, one at a time actually. First I increase T3, then I hold on for 2 weeks and then increase Thyroxine.

I really don't know whether I will ever become hyper (this way I will know I have reached something like a full replacement dose and then will go down a little) because I don't know whether I will manage to get the T4/T3 ratio right and I will still be hypo either with:

1. too much T4 (and little T3) that cannot get converted and will 'clog' my system or,

2. too little T4 and more T3 (the T3 in turn will still be suppressing my thyroid but won't be enough to fully replace it, the T4 dose won't be enough either to make up for).

In both 1 and 2 I feel hypo, I feel exactly the same actually (same symptoms), and thus I cannot determine which one (1 or 2) is valid at the certain moment so as to change dosage. I never end up being hyper, ever.

That is my greatest problem - that I may end up endlessly increasing and miss my full replacement dose because of an inability to get my T4/T3 ratio straight. I will always be hypo.

If T3 only was an option, I would have gone T3 long time ago, but T3 alone is not for me...

[greygoose in reply to YulianaRossenova]

From 50 to 106 in 2 months is much too fast! As I said, only 25 mcg every six weeks. It should have taken you at least 3 months. And now, you have just got to hold for six weeks and get tested, or you are going to over-shoot your sweet spot. You can't go on increasing like that forever, without ever testing.

NDT doesn't suit everyone. Some people it does suit but they need to add some T3, and others need to add some T4. Some it doesn't suit at all whatever they add.

You should have determined your conversion rate before you even started. No wonder you're having problems, you're working blind. You really, really need to test. And, now, you need to stop and let the thyroxine take effect. Stop increasing until you have tested.

[YulianaRossenova in reply to greygoose]

I intend to hold on for 4-6 weeks now, that was my initial purpose actually, Greygoose

I know that after 6-8 weeks on 50 T4 I ended up with the following results: TSH 0.5

FT4 19.25 (12-22)

FT3 4.99 (3.10-7.10)

I was veeery hypo. the first two weeks after starting 50 T4 I felt almost good but then I got progressively worse and worse.

My results before that on no medication were:

TSH: 1.64

FT4 14.70

FT3 4.45

I don't know how I can determine my conversion rate...

It has always been like this - whenever I start T4, I immediately feel a reduction or a complete lift of hypo symptoms and then I start feeling hypo again. So, in the long run my conversion is not good apparently. And I am absolutely positive that the T4 I take gets converted to FT3 in less than 7 days, I can feel it. Everytime.

"But, I don't understand why you're building both up at the same time. Why are you taking T3? Because you aren't a good converter? How bad is your conversion? You probably don't need 100 mcg if you can't convert it. Excess unconverted T4 will lead to excess rT3 and make matters worse."

Isn't everyone on NDT a bad converter? Most people who turn to NDT have very high FT4 levels and low FT3 when on T4 only. Then how come аre there people taking 6-7 grains of NDT without developing a rT3 issue?

[greygoose in reply to YulianaRossenova]

No, everyone on NDT isn't a bad converter. Not by any means. But, we can be different degrees of 'bad'.

You are on a highish dose of T3, therefore most of that 100 mcg T4 will be redundant. If you're taking NDT, the ratio of T4 to T3 isn't nearly that high in favour of T3. So, it's not the same thing at all.

And, excess unconverted T4 will convert to rT3, it's just a question of how much unconverted T4 and how much rT3.

And, on 50 mcg T4 only, you weren't a very good converter, at all. You have to compare the FT4 to the FT3. The FT3 should always be higher than the FT4, in their respective ranges.

'My results before that on no medication were:

TSH: 1.64'

So, how did you get diagnosed? That TSH is euthyroid. You don't appear to be hypo at all, looking at that blood test.

I know that all things are possible, but I really do not know how anyone can feel their conversion. What does it feel like?

[YulianaRossenova in reply to greygoose]

I have Hashimoto's. My TSH moves up and down from 1.5 to 3.

These results are very bad, for me personally.

When I had a healthy thyroid, my FT3 was 7-8, I was an outlier, so a level of 5 is quite hypo for me...

Well, on the conversion question, I will give you this year's 37.5 mcg T4 dose example.

I was taking 37.5 T4 and 12.5 mcg T3. I was hypo. I reduced T4 to 25, then to 0, while I stayed on 12.5 T3, I then reduced it to 6 and then to 0. Then I restarted with 37.5 T4. I am keeping a log so I know this for sure. On the 2 day of taking that dose, I was symptom-free, and this continued for 12 days, then I started getting hypo again... So it must be FT4 converting to FT3...

It has always been like this with taking T4. I know that you won't believe it.

[greygoose in reply to YulianaRossenova]

Yes, I didn't question can understand that. But, I'm surprised a doctor did and actually diagnosed you.

OK, so if you have Hashi's, your TSH needs to be suppressed, to calm down antibody activity. Are you on a gluten-free diet and taking selenium?

[YulianaRossenova in reply to greygoose]

I had been feeling bad for 2 years before I got diagnosed.

I was finally diagnosed officially after I self-diagnosed myself. I don't have high antibodies since I have nodules and only my TGab antibody goes up sometimes but then comes down by itself.

I have tried gluten-free for a couple of months and my antibody went sky-high, ha-ha. That is why I am not on a gluten-free diet right now.

[greygoose in reply to YulianaRossenova]

Well, a gluten-free diet isn't just about antibodies. Some people find it just makes them feel better.

Antibodies fluctuate, anyway. It doesn't mean anything. If they go over the range, then you have Hashi's, and you will always have Hashi's until the thyroid is destroyed. It's got nothing to do with nodules.

[YulianaRossenova in reply to greygoose]

I mean when you have Hashi's with nodules you often do not have elevated antibodies.

That is why they missed to diagnose me for such a long time.

95% of the time my TG antibody is within range.

My TPO has always been within range.

I definitely did not feel better when I was gluten-free. I felt the same. No difference.

[greygoose in reply to YulianaRossenova]

Yes, I was the same. Gluten-free did nothing for me, either.

I have never heard that having nodules means that your antibodies are lower. Just about everybody has nodules, even when they don't have thyroid problems. I have them, and my antibodies were sky-high.

[YulianaRossenova in reply to greygoose]

I think that almost everyone put on T4 only gets impaired conversion because of TSH falling and thus slowing down T4-T3 conversion.

When I take no medication, my conversion is fine.

Also, peripheral conversion of FT4 to FT3 is better when FT4 levels are lower.

I think that is one of the reasons for adding T3 to a T4 only regimen, or for taking NDT. By lowering FT4, T3 helps with conversion indirectly.

[greygoose in reply to YulianaRossenova]

No, it's not true that almost everyone on T4 only has impaired conversion. If that were true, there'd be far more people on this forum. The majority of people are fine on T4 only. We're here because we're the odd ones out.

But, all you're saying, to my mind means that you know you are taking too much T4 compared to your dose of T3.

[YulianaRossenova in reply to greygoose]

I am not sure about this - all of my friends and acquaintances on T4 have high FT4 (top) levels and low FT3 (bottom) levels.

"But, all you're saying, to my mind means that you know you are taking too much T4 compared to your dose of T3. "

I really cannot say.

I can just guess that I have not reached my full replacement dose, that I still have an underlying working thyroid and that my body cuts back production even more the more I increase T4 and especially T3 dosages and that that is the reason why I still feel hypo.

I need to override the control system and only then will it be clear what my T4/T3 ratio is.

If T4/T3 combo therapy works at all for me...

[Sarahpk in reply to greygoose]

Paul Robinson Recovering with T3 books about managing on just T3 with very👍

[greygoose in reply to Sarahpk]

I'm sorry, I don't understand your comment.

[Sarahpk in reply to greygoose]

Yuliana was talking about going T3 only and this book describes one mans journey with this and in detail wht to do.

[greygoose in reply to Sarahpk]

Ah, then you should have clicked on the Reply button under her comment, not mine.

[jgelliss in reply to greygoose]

greygoose , I'm in agreement with you . Changes need to be gradual and to give the body to acclimate to changes . Six weeks is right for T4 and T3 is three weeks because it's faster acting .

[greygoose in reply to jgelliss]

2/3 weeks for T3 up to a certain point. And, then, you have to hold for six weeks and test before continuing.

[shaws]

I agree with greygoose - chopping and changing means your body cannot gradually, effectively, deal with your replacement hormones.

Usually, when first beginning, you take the same dose for six to eight weeeks then a 25mcg increase every six to eight weeks. It takes about six weeks for your body to accept the additional 25mcg.

Patience is a virtue and it is not like taking a headach tablet which you take and an hour latr headach is gone.

You are dealing with replacement hormones that your body cannot survive without. The doses have to be gradually increased until you feel well. If after a number of months and you are on a stable dose but aren't improving, then you can look at reducing/replacinging with T3. I've always taken my dose once daily which I think helps my body to let me know when I've taken a bit too much and drop to previous dose and it has been fine for me.

[diogenes Remembering]

One of the greatest problems about trying to regain thyroid health is that your body is continually trying to make the best of whatever hormones are available in whatever strength. It's officially called homeostasis. Chopping and changing means your body cannot find a stable position as it confronts different amounts of T4(T3) from day to day, week to week. All changes should be done gradually in one direction and not violently up and down. Hormone replacement can never be exactly the same as health, but slowly you can approach something close to it. Most studies show QoL (quality of life) in hormone replacement patients is never as good on the average as it was in healthy people and it is just something all have to put up with whilst doing as well as they can.

[Silver_Fairy]

What do you mean by 'shutting off my thyroid'?

[YulianaRossenova in reply to Silver_Fairy]

Suppressing it completely and relying entirely on exogenous hormone intake.

[jgelliss]

Hi YulianaRossenova my sympathy and prayers go out to you . As I'm reading your different protocols that you are and was experimenting with . If I understand that at first you feel great with new changes and short time later you are experiencing a down fall . I did experience the same as you . The good feelings where short lived . In my experience I tried more T3 less T4 up and down . What works for me is I'm on higher doses of T4 and just a small mix of NDT for my T3 . I don't remember if you tried that protocol yet . Try having your Endo/Dr prescribe you higher T4 dosage with just a bit of NDT for your T3 . See how that works for you .

Wishing you success as you proceed with your new and best protocol that works for YOU .

[LAHs]

Here is my two cents worth. First determine if indeed you are a bad converter of T4 to T3. You will need enzymes which catalyze this process. Get your selenium measured, this is the main mineral that your body needs for the conversion process. Make sure you also have plenty of Vit D B12 and folate. If any of these are inadequate then you will not convert. Take supplements or eat foods which will build up these deficiencies. It is fundamental to know if you are converting your T4 to T3, knowing this will remove most of the chaos you have going at the moment.

[YulianaRossenova in reply to LAHs]

LAHs, I don't have any deficiencies. Apparently there is something else wrong with me.

[YulianaRossenova]

Thank you, everyone, for your input!