Advice on thyroid med dose, please!

[Juliet_22]

Hello thyroid warriors,

I am trying to understand which direction to go in with my thyroid meds.

My TSH was 2,9 on the last test, T3 25% of the range, T4 70% of the range.

My TSH is always normal (1-2, I know 2 is already on a high side, so usually dose increase at that level) when it's sunny and warm and always rises when the weather turns cold.

I currently take levo 112 per day. Went up from 88/100 as TSH was 4,9 then up again to 100/112 - alternating daily -TSH was 1,9, now on 112 as per last test results. Same brand levo, test fasted, before 9am.

Last test result when I was on 100/112, 7 weeks on that dose:

TSH 2,9

T4 - 70%

T3 - 24%

Anti TG normal

Anti TPO 120, hangs there despite my GF and dairy free whole foods diet

Low T3, I get it, but I function well on it when my TSH is around 1.

I took Erfa before. Started off great, it really boosted me well back then. A few weeks later - went hyper on TSH, heart palps, high pulse, sleep issues, severe hair loss, heart tensions, neck tension, dizziness TG antibody went up. My Ts were great, but I felt awful as went hyper with TSH, which was enough for me!

Tried synthetic T3 slow release, fast release, can't take it either.

I could try Armour, got a prescription for it, but holding off due to my last negative experience with Erfa. Would it really be that different? I know some people here can't take any form of T3.

My 24% T3 doesn't concern me. My energy and focus is good. I live well with that T3 level. My cortisol is at a great level, just tested it a month ago.

But my TSH of 2,9 is causing hypo symptoms and I am really starting to struggle with this head pressure and feeling like I am slowing down.

Would you suggest me to increase levo? But 70% T4 already ... Is it still ok?

I monitor B12, folate, iron/ferritin and D3 regularly and I supplement to aim to be at ideal ranges for all those. I am rigid about all those. That's not an issue for me.

Just wondering what would you suggest for my meds ... please!

P.S. We will also have to plan a move to another country. Time and time again I see how cold weather triggers a rise in TSH and within a month in a warm and sunny weather it's down to below 1 by itself, never rises, never need more meds.

Lived in the tropics for 10 years before, was doing well on levo 75, never needing to adjust. All that increase constantly stuff started to happen when we came back to UK. So making a new plan. A girl wants to live and thrive 😀⭐🥳

In case if it helps some. Sometimes it's not you, or nutrients. It's the weather. Always is for me.

[greygoose]

Hmm... Lot of mis-conceptions here.

Firstly TSH, by and of itself, cannot make you hyper, cannot make you feel well and cannot cause symptoms. It doesn't make you feel anything. And the TSH level follows the level of the FT4/3, but it moves much more slowly. So, I very much doubt that when you felt well and your TSH was 1, that it was 1 even though your FT3 was low. All levels fluctuate with Hashi's, so your FT3 had probably been higher than that, causing your TSH to drop slowly to 1, only by the time it got to 1, the FT3 had dropped again, so the TSH had to rise to reflect the new level. You cannot manipulate the correlation between the two levels.

And antibodies much the same. And there is no diet that can be guaranteed to lower them. That's not why people do gluten and dairy-free diets. They do them because they are sensitive to those things and eliminating them makes people feel better. Anti-bodies fluctuate all the time, and gradually reduce by themselves as more and more of your thyroid is destroyed.

Besides, is it even desirable to try and reduce them? They're not doing any harm, they are keeping your blood clean and free of traces of TPO, which shouldn't be there. They are not attacking your thyroid. That is not their job.

So, you're concentrating on the wrong numbers. The most important number is the FT3 because that is the active hormone needed by every single cell in your body to function correctly. And it's the T3 that causes symptoms when it's too high or too low.

Most hypos feel better in a warm climate than in the cold. That is because in a warm climate the T3 is not needed to keep the body warm, so there is more to be used for other functions. The colder it is, the more T3 you need.

I don't think increasing levo again is going to be the answer for you because you are a very poor converter. And raising the FT4 could make it worse rather than better. You really don't want your FT4 too high.

NDT doesn't suit everybody - it didn't suit me! But I don't know what you meant by 'went hyper on TSH'. Do you mean your TSH dropped below range? That is to be expected when taking any form of T3, it doesn't mean you're hyper. And it certainly wasn't the TSH causing all those symptoms because TSH doesn't do that.

So what was the problem with synthetic T3? Did you have the same symptoms? Were you taking too much or too little? Did you start on too high a dose? Did you drop your levo by too much? Did you increase too quickly? There are many mistakes to make when dosing T3, but without more information we cannot tell if you were making any of them. But, obtaining and taking T3 would appear to be your best bet. We just have to sort out how to do it.

[Juliet_22 in reply to greygoose]

Thank you, I get it. I hear you about Ts, but I don't understand what to do still.

Synthetic T3 - it was compounded, started from a tiny dose, can't remember what dose, but it was so small, like 0,5 or less, or 1, something like that. Brain felt spaced like it wasn't me. Pains in the heart. Heart pals, couldn't function. Tried it 3 times! Cannot go back, scary experience for me. I have a healthy heart as well.

Erfa - TSH was like 0,00026. That was too hyper for me and I had all the hyper symptoms, which stopped when I went back to levo. T3 was 60%, T4 around the same, so good Ts at a time.

2 months ago on levo when my TSH was 1,9, T3 24% and T4 70%, I felt literally amazing. But it was warm and sunny here, nice weather of Sept. And I did low level laser therapy that boosted me so much and made my TPO drop to a record low 78. I was at the gym lifting weights, running, literally felt amazing, so positive, calm, boosted, even with those thyroid numbers (laser helped)! But cold weather came and things went down. Cold weather messes everything up for me every time.

I don't know what to do tbh. I hear you about not feeling better on levo by increasing it. I literally feel like I am not even taking any levo on 112!

Should I try Armour?

[SlowDragon Ambassador in reply to Juliet_22]

Erfa contains lactose

Armour doesn’t

You could try adding SMALL dose Armour alongside your Levo

[Juliet_22 in reply to SlowDragon]

Thank you for letting me know, so basically they don't declare it? How unfair! I looked into Erfa ingredients and none of them say lactose: The inactive ingredients are calcium stearate, dextrose, microcrystalline cellulose, sodium starch glycolate and opadry white. And yet the AI said it does contain lactose in its formulation. How annoying.

I asked the AI and it said Armour contains lactose too: "Armour Thyroid does contain lactose as one of its inactive ingredients. If you are lactose intolerant or have a sensitivity to lactose, it is essential to discuss this with your healthcare provider. "

Hmmm... What a puzzle.

When you say small amount of Armour, how much would that be?

I was prescribed 1,5 grains of Armour 60 mg. I haven't paid for it yet. Just holding off for now.

Or do you think I can go with Thybon Henning T3, starting from 5mcg and seeing how it goes?

[SlowDragon Ambassador in reply to Juliet_22]

Erfa use to contain lactose….perhaps ingredients have changed

Personally I would try Thybon Henning

Starting with 2.5mcg twice a day …..that’s an 1/8th of a tablet…..speck of dust really

Assuming that’s ok …..increase morning dose to 5mcg after a week or so

And ……a week or so later afternoon dose to 5mcg

Hold at that dose 8-10 weeks before retesting

[Juliet_22 in reply to SlowDragon]

Thank you! Would your recommendation to try Thybon be based on my previous reaction to Erfa NDT?

[greygoose in reply to Juliet_22]

Synthetic T3 - it was compounded, started from a tiny dose, can't remember what dose, but it was so small, like 0,5 or less, or 1, something like that. Brain felt spaced like it wasn't me. Pains in the heart. Heart pals, couldn't function.

I honestly cannot imagine that such a small dose had such a huge impact. It was so small I doubt your body even noticed it. Have you ever tried taking one of the well-known brands of T3? I don't know where you are so I don't know what's available to you, but I always mistrust 'compounded' T3. You don't know exactly what's in it.

Erfa - TSH was like 0,00026. That was too hyper for me and I had all the hyper symptoms, which stopped when I went back to levo. T3 was 60%, T4 around the same, so good Ts at a time.

Having a suppressed TSH does not make you hyper. I imagine you mean that your TSH was too low for you, but that doesn't make any sense, either, because it's totally irrelevant. Do you know what the TSH is? It's a pituitary hormone secreted when the pituitary senses that there's not enough thyroid hormone in the system. Thyroid Stimulating Hormone - it stimulates the thyroid to make more thyroid hormone. So, the lower your FT4/3 the higher your TSH and vice versa. And that's all it does. It doesn't make you feel anything. And when your pituitary is satisfied that there's enough thyroid hormone in the blood it stops making TSH. That's all. And taking T3 has a stronger impact of the pituitary than T4 so it's perfectly normal that taking T3 suppresses the TSH. That does not mean that you are over-medicated or 'hyper'.

As for symptoms, hypo and hyper symptoms over-lap to a great extend so it's difficult to tell thyroid status by symptoms alone. Which is why we need blood tests to back up what we're feeling. But by blood tests I mean FT4 and FT3. Not TSH. That doesn't tell you anything much.

Cold weather messes everything up for me every time.

It does for a lot of people. That's why they increase their dose in winter and lower it again in the spring.

I literally feel like I am not even taking any levo on 112!

That's because T4 (levo) is basically a storage hormone that doesn't do anything much until it is converted into T3, and you are a poor converter. Your FT3 is too low - as you said yourself, you felt best when it was around 60%, which is a good level.

Should I try Armour?

Not if you're going to continue fussing about the TSH, no. Because on a decent dose of Armour it is going to be suppressed. And until you except that, you're not going to get well.

You've got to forget about TSH and forget about antibodies, because they are totally irrelevant you the object of the exercise: making you well.

Have you ever had your cortisol tested?

[Juliet_22 in reply to greygoose]

Thank you, I understand the theory of everything you had said, but in practice things are different for me.

I understand everything about TSH, it didn't scare me on NDT, but I had horrible symptoms I described. You can't take that as the norm, in no shape or form. My neck felt like I was being struggled all the time, heart paps, HBP, feeling dizzy, panics, etc. etc, it was horrid! Back to T4 and none of that, none!

I understand the theory of everything, but I can only go with me personal experience and symptoms. And I haven't worked it out yet.

Yes, tested my adrenal saliva cortisol and it was great. I know what great means too, upper normal range am, gradually going down, close to the bottom range pm. Again, as I said I have energy. I feel calm and happy and don't have anxiety or depression. I sleep well. I'm running, exercising, but I'm slowing down.

My compounded T3 came from Roseways labs. Perhaps my next step is to try regular T3. I can request that from them and try. Compounded T4 didn't work for me either, but I went hypo and low energy, whereas with T3, I have heart palps, pains in the heart and feeling spaced and detached from myself, like it's not even me. I doubt regular T3 will be different, but I can try. I would love to boost it without side effects and feel amazing. A few years ago, my T3 was 60% on levo alone, but all it changed.

Thank you for your input, I so appreciate your time and desire to help. I don't feel I'm a regular person who fits into thyroid theories, I am just trying to find a way through this very complex puzzle and I'm grateful for advice.

[greygoose in reply to Juliet_22]

You're welcome.

[Juliet_22 in reply to greygoose]

I just wanted to come back to our discussion and my point about TSH, as I know other members are reading it and in case if someone finds themselves in my shoes, perhaps it will help.

Going back to what you shared about TSH, T3 and T4 and how low T3 drives TSH up and how TSH doesn't matter as much.

And just to show how my TSH can rise even with great T3 levels - I've gone through all my bloodwork results for the last 12 years, and put everything into a tracker.

10 years ago, I had TSH of 2,9 - and yet my T3 at a time was 90% of the range and T4 was 78% of the range, that was on levo 75 alone!

So if T3 completely influenced my TSH, then my TSH wouldn't be at 2,9 back then, yet it was. Obviously I was quite hyper based on my Ts back then, and yet TSH was 2,9 - work that out.

Going forward a few years, TSH 0.31, T4 just 20% of the range, T3 36% of the range - and I'm running long distance races, exercise for 2 hours a day, intensely, wake up at 6am with ease, loads of energy for my workouts, and I feel my absolute best and maintained it for years before giving birth to kids.

So while I totally understand your point about T3 and it's the right point, based on my experience, TSH matters for me a lot, and TSH below 1 makes me climb mountains, even if my T3 is below the "ideal" 50%+ range, and is somewhere in the 25-35% range.

I'm yet to find an explanation for it, but personal results and experiences matter just as much as theories do, and need to also be taken into account.

Thank you again for sharing what you shared, I will do my best to try different versions of T3 and hopefully make it work this time.

[greygoose in reply to Juliet_22]

And FT3 of 90% through the range is not hyper. Hyper would be well over the top of the range.

And you're forgetting what l explained about the TSH moving much more slowly that the thyroid hormone levels, and having to catch up all the time. And, as you have Hashi's, which is responsible for your levels fluctuating, your TSH never quite corresponds to your thyroid hormone levels.

But you're still not understanding that the TSH doesn't 'make' you do anything. That's not its job. It's the T3, or lack of it, that does that. The TSH is just a very rough guide. And, even the T3 has to be inside the cells to be active, and there's no way we can measure that.

Of course personal experiences matter, but there are certain biological facts that do not change. And one of them is that TSH doesn't cause symptoms or well-being in anyone. And blood test results cannot tell the whole story because they can only tell you what's in the blood, where the hormone is inactive, not what's in the cells. And they are not 100% accurate even at that. So whilst everyone is different, they're not that different.

Good luck with the T3.

[SlowDragon Ambassador in reply to Juliet_22]

My compounded T3 came from Roseways labs. Perhaps my next step is to try regular T3.

Yes I would try Thybon next

[Judithdalston]

When I introduced T3 , a tiny 2.5 ish mcg to my levo., I got the feeling of pounding heart almost immediately and a loosening on stiff painful hips..to me the ‘rocket fuel’ mentioned by others. I saw an endo.the other day, in a Trust with a reputation for not liking T3, who was interested in the effect the first doses of T3 had on me, and to him what I described was proof that I needed it ( so somewhat ignoring stat.evidence that my FT3 had only ever been in 3-13% range even if FT4 was over range). So perhaps what you experience was like me …your body saying ‘Wow, I’m waking up, give me more!’

[Juliet_22 in reply to Judithdalston]

Thank you for sharing, what did you do after? How did it benefit you? Did the side effects go away?

All the T3 guidelines say to stop taking T3 if there's pain in the heart area as a side effect. I'm just left with Armour of Thybon to try...

[Judithdalston in reply to Juliet_22]

Kept on with it very gradually increasing dose then up to 25 mcg but took couple of months to get that far. After initial ‘wow’ the side effects went just noticed the everyday improvements. I have fibromyalgia as well so used to pain, I don’t think I’d call feeling the heart working as pain, though noticeable.

[SlowDragon Ambassador in reply to Judithdalston]

When I started on 2.5mcg …..initially I got a real “whoosh” after each dose

Not alarming…..but definitely noticeable

That faded after 2-3 days

I slowly increased dose after that

[Juliet_22 in reply to SlowDragon]

Thank you, that's worth knowing! Wil try and see, appreciate your help!

[Insomania]

I’ve got on well with Armour but it’s been an uber cautious approach on increases with a thyroid dr. With an aim to get T3 into 70% of range and symptoms improved. My TSH is 0.01, as expected on NDT.

I started with 1/4 grain, 6-8 weeks, retest and increase 1/4 grain. There’s a definite pattern in the cycle. As I get nearer to needing an increase some of my symptoms reappear, I’m tired in the afternoon.

Also my ferritin recently slid down to 48 (bottom of range is 30) and it had a negative effect on T4 & T3. Very eye opening! I’m infused with iron again and had a 1/4 grain increased so hoping my T3 recovers for my next testing, I feel like it is.

[Juliet_22 in reply to Insomania]

How interesting that they are giving you an infusion with a level of 48, as usually at that level it's supplementation and infusion only if you're low in ferritin. In saying that, the infusion did raise my ferritin to 98! I supplement with iron every day.

[Insomania in reply to Juliet_22]

I can’t tolerate any iron tablets, tried every type so GP referred me to nhs haemotology. I have quarterly iron panel to monitor iron deficiency anaemia. I showed Dr my recent thyroid levels and she agreed it. V thankful.