T3 side effects : Just started taking 5 mcg of T... - Thyroid UK

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T3 side effects

Coachgeorge profile image
34 Replies

Just started taking 5 mcg of T3. Doc wants to increase to 10 in the morning. I’m very shaky, but have been for several months. I think she is trying to figure out if I’m converting. Is this a typical side effect? Thank you

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Coachgeorge profile image
Coachgeorge
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SeasideSusie profile image
SeasideSusieRemembering

To find out if you are converting, you look at TSH, Free T4 and Free T3 when on Levothyroxine only. You can't do it once you are taking T3 as the results will show an FT3 result reflecting that you take exogenous T3.

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

My last draw was T4 2.39 (.80-1.80 range)

TSH 2.070 (.4-4.5 range)

T3 2.8 (2.3-4.2 range)

I’m afraid the addition of the T3 was a shot in the dark. I’d truly appreciate your thoughts. My kidneys are acting up too. I suspect it’s all thyroid related. Endocrinologists won’t see me without a referral and I can’t get one. Thank you

SeasideSusie profile image
SeasideSusieRemembering in reply to Coachgeorge

T4 2.39 (.80-1.80 range)

T3 2.8 (2.3-4.2 range)

Are those Total T4 and Total T3 or Free T4 and Free T3?

And was this test done when you were taking Levothyroxine only (no T3)?

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

Only Levo

SeasideSusie profile image
SeasideSusieRemembering in reply to Coachgeorge

What about the tests - Total or Free?

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

Free

SeasideSusie profile image
SeasideSusieRemembering in reply to Coachgeorge

TSH 2.070 (.4-4.5 range)

Free T4 2.39 (.80-1.80 range)

- over range at 159%

Free T3 2.8 (2.3-4.2 range)

- 26.32% through range

So those results will normally have told your doctor that your conversion was poor if your TSH had been 1 or below, but your TSH was actually high for such a high Free T4.

If your doctor wants to increase your dose of T3, then I would take 5mcg in the morning and 5mcg later in the day - afternoon or even bedtime but make sure there's the usual time gap recommended when taking thyroid meds, i.e. one hour before or two hours after food, with water only.

Just started taking 5 mcg of T3. Doc wants to increase to 10 in the morning.

BUT according to your other post you've only been on T3 for 3 days now and you've said

I started 5 of t3 on Saturday. Started 5 2x daily yesterday

Why increase it so soon. You need a couple of weeks on 5mcg so that your body gets used to it, then increase.

So it seems we're getting confusing information - Doc wants to increase to 10 in the morning, started 5 2 x daily yesterday

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

Sorry, I have been on for three days; Saturday, Sunday and Monday. Today was day 4. I took 5 on Saturday and Sunday and 10 on Monday and today. From your post, it seems like you agree I need the t3. Is that correct? Maybe, I went too fast? Thank you for the help!

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

My other question is, if I don’t need t3 was I just getting too much Levothyroxine? I’m very lost. Sorry

SeasideSusie profile image
SeasideSusieRemembering in reply to Coachgeorge

There is an anomaly with your TSH and Free T4. Normally when one sees FT4 so over range (yours is 159%), the TSH would be very low, possibly suppressed, yet yours is 2.070 (.4-4.5 range). So one would normally interpret the FT4 as too much Levo, but your TSH is actually indicating not enough Levo for a treated hypo patient.

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

If you were me, what would you do? This is why I said I think it’s a shot in the dark. My TSH was around 1.4 until I got sick and lost a lot of weight.

SeasideSusie profile image
SeasideSusieRemembering in reply to Coachgeorge

Your first post on the forum mentions that you are (or were) taking CBD oil. I don't know how this affects anything. But I would want full testing of

TSH

Free T4

Free T3

Thyroid antibodies - Thyroid Peroxidase and Thyroglobulin are the antibodies for Hashimoto's which is where you can swing from hypo to hyper to hypo as and when the immune system attacks the thyroid, causing fluctuations in test results as well as symptoms.

Vit D

B12

Folate

Ferritin

This will give a picture of your full thyroid and vitamin status and take it from there.

When you do the tests, we always advise

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

Okay. I guess I’ll take the 5 of t3 for the next few days and then ask her for more testing on Friday. I probably won’t take the Levo or t3 on Friday morning. Thank you

SeasideSusie profile image
SeasideSusieRemembering in reply to Coachgeorge

I probably won’t take the Levo or t3 on Friday morning.

If you want the most accurate then follow the timing for last doses of Levo and T3 given in my post above.

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

Is it possible that I don’t need meds? I’m stretching for answers as no one in my medical community seems to be able to help and I’m getting worse.

SeasideSusie profile image
SeasideSusieRemembering in reply to Coachgeorge

Is it possible that I don’t need meds?

Without knowing your results before you started any thyroid replacement hormone, it's not possible to say whether you should have been prescribed thyroid meds. Who put you on thyroid hormone, when, why, what were your results, were you retested after 6 weeks to check your levels, did you have dose changes based on the results of new tests?

One of the first replies to your first post on the forum was from Radd who asked:

If you advise what thyroid issue you have, if you have been tested for thyroid antibodies TPOAb & TGAb, if you are medicating thyroid hormone replacement and if so which one, and post any recent thyroid hormone test results complete with ranges (numbers in brackets), members will be able to comment.

and you didn't respond to that reply so we have no background to your thyroid journey.

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

I’ve been on medication for years and have no recollection of test results. I was completely through menopause by 50 and I’m 65 now. I think I started Levothyroxine in my 40s and I think it’s always been 100mcg. Dr. Lowered to 75 mcg and now 50 mcg with the t3. I don’t remember any tpo ab or tgab testing but I will ask again. I always thought I had hypothyroidism. I’ve been sick since January when I had the flu. The strange thyroid tests started at the end of January. No one seems to know what’s wrong. I’m pretty much bedridden.

jgelliss profile image
jgelliss

How high was your FT4 when the Dr added your T3 ? Do you split your T3 1/2 AM 1/2 afternoon ? You might be dosing with T3 with a high FT4 . Knowing your FT4 results would be very helpful . I had this problem when I first started my journey with NDT . My Endo at the time did not reduce my high FY4 and added in NDT . It was awful . I had all kinds of hyper symptoms . I was very amazed why people are so gong hu about T3/NDT . When it's done correctly lowering high FT4 first slowly before adding any T3 is the right way to go to make it work the way it was meant to . Adding small doses of any T3 to a lower FT4 makes it a successful out come . T3 can unmask adrenal issues . One must be very careful . Most Dr's know very little about adrenals and how to treat it .

Coachgeorge profile image
Coachgeorge in reply to jgelliss

My last draw was T4 2.39 (.80-1.80 range)

TSH 2.070 (.4-4.5 range)

T3 2.8 (2.3-4.2 range)

My resuls are a little unusual. I took 5mcg of T3 this morning. The last two days, I was taking 10mcg and it didn't go well. I'm a little calmer today. Yesterday, the hyper feelings were out of control including hand tremors and muscle spams in my legs. I haven't had that yet today. However, I'm very tired. My current dose of Levo is 50mcg. Thanks for any help.

jgelliss profile image
jgelliss in reply to Coachgeorge

Your FT4 is over range and your FT3 is low . Being wired and tired is hyper symptoms . You might want to consider switching Dr/Endo who understands how to dose with T4 and T3 . I noticed you are from USA you might want to get in touch with some websites that can help you find a friendly user T3/ NDT Endo . Or you might want to ask your local pharmacist that might know of Dr/Endo that is knowledgeable with thyroid meds T3 /NDT /T4 .

Best Wishes . I hope you get sorted it out very soon .

Coachgeorge profile image
Coachgeorge in reply to jgelliss

I'm just learning about all of this. I see folks talking about NDT. What is it?

jgelliss profile image
jgelliss in reply to Coachgeorge

Not a problem . We all started out like you too . Your Not alone . NDT is Natural Desiccated Thyroid . It's made from porcine . It's said that it is closest to the human thyroid . I tried synthetic T3 (Cytomel) and it didn't work well for me . I had headaches felt the T3 run out and had surges from it . The NDT works for me and many others well because it's a much smoother delivery of T3 for me ant many others . Having had TT it also has all the hormones that my thyroid once made and no longer does since my thyroids where removed surgically .

SilverAvocado profile image
SilverAvocado

Hi Coachgeorge, some people in the thread aree saying your blood results look strange. I mostly disagree. This pattern is unusual, but a friend of mine has it and it shows up on the forum occasionally.

As you probably know, TSH stands for thyroid stimulating hormone. It is a chemical messenger made in the pituitary to tell your thyroid you need more hormone. Healthy levels are about 0.8-1.8, and when on thyroid hormone replacement it tends to get pushed down quite low because the tablets are good at shutting down the pituitary's need for extra hormone.

As you can see, this means your own TSH is fairly high at 2.07. This means your body is saying it needs some more hormone.

But when we look at your freeT4, which shows how much available T4 is in your blood, this is over range which is a very high result. T4 is all that is in Synthroid/Levothyroxine tablets that you've been taking, so this shows you're on a dose that's high for you.

This is what is making people puzzled. You're on a T4 dose that probably too high, that's reflected in your freeT4 result. This makes us expect to see a low TSH, but your TSH is raised.

BUT - there is an explanation for this in your thyroid panel. Your freeT3 is very low. This shows how much of the active hormone, T3 is available in your blood. This is the hormone needed be every cell and hormone in your body, and this blood test most closely reflects symptoms. The reason you feel so rubbish is because your freeT3 is low.

Usually what would happen in a healthy person is that your body would make most of its own T3 by converting T4 into T3. This is what doctors assume will happen when they give us T4 medicine. We're supposed to take that, and our body converts it all into T3 and that T3 keeps us well. But sometimes, for whatever reason, our bodies are not good at converting, and we don't convert the T4 into T3, and end up getting sick.

The TSH response is to thyroid hormone overall in our body. Sometimes it seems to respond to T4 only, but I've noticed that sometimes in low converters the TSH is responding to freeT3 being low. This is what is happening in your case. Your freeT3 is low, so your TSH is raised asking for more.

This very clearly shows that you need T3, you are a textbook case of a person who needs it.

It's also possible this happened to you suddenly. It's very common to do well on T4 for decades and then suddenly it stops working. The exact same thing happened to the friend I mentioned. He was well on T4 for about 30 years, and then after a doctor messed about with reducing his dose he became a terrible converter like you are.

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

Also, I had the same thing as your friend. I was fine until we reduced my T4 meds to in November. Now, I am a poor converter. However, in my internists defense, my bloodwork, at that time was over range for T4. Something certainly started going wrong in November. Will probably never know what

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

My friend had a similar experience. Because this pattern is unusual I think doctors just don't understand it.

He had had doctors looking at TSH only, seeing it was high (his was actually quite a bit higher than yours, I saw it go up to 9), and raising his dose. Then at another check up months or years down the line he had a doctor look at both TSH and freeT4, panic when they saw the over range freeT4 and gave him a big dose reduction.

This is the reason it's so important to see all three tests of the full thyroid panel. But as you're discovering doctors are very ignorant about thyroid :(

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

So what did he do?

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

He added some T3.

But he's not much of a success story because he hasn't kept up with adjusting his dose, so he's still not very well.

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

Sorry to hear. My daughter doesn’t take her meds regularly and never feels well. It’s something I’ll never understand.

Coachgeorge profile image
Coachgeorge

I think those might be old results. My last draw shoes Tsh at 4.49, ft4 1.32 and ft3 3.2. If I’m understanding, my ft4 and ft3 need to change me up a little. If that happens, hopefully tsh will drop. Right?

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

It doesn't matter whether the results are old. When the test was taken you were a very poor converter. It is possible to improve conversion by improving general health in some ways, but it will likely not improve by a huge amount and it will be slow and take a lot of work.

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

I am improving since she started the t3. It seems like I just need more. Thoughts?

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

These are US results I believe, the units are different from the UK so it's doubly important to always include the ranges. Assuming these ranges are the same as the results you posted earlier in this thread, let's see:

TSH (.4-4.5 range)

Free T4 (.80-1.80 range)

Free T3 (2.3-4.2 range)

Looking at the new results, TSH is very high, so that immediately tells us you're undermedicated, because TSH is the body's signal it wants more thyroid hormone.

Overall the rule of thumb goal of thyroid hormone replacement is to get freeT3 high in range. Looking at this your freeT4 has dropped quite a bit and is around mid-range. This is fine, freeT4 isn't too important once you're taking T3.

Your freeT3 is also about mid-range, which is a bit on the low side. Most people feel better with it in the top third, if necessary all the way up to the top.

I agree you probably just need a little more. You've raised quite quickly if my counting is right? It's best to go fairly slowly as you approach your sweet spot. Have an increase of 5 or 6 mcg (depending on tablet size), then wait 6 weeks retest and adjust again. That's the very cautious approach, I tend to be very cautious, some will advocate going a bit more quickly.

Coachgeorge profile image
Coachgeorge in reply to SilverAvocado

Thank you. I suspect your thoughts are similar to my internist. When I spoke with her she told me not to increase my t3 until my next draw. It’s a waiting game and you were right, I feel like rubbish. However, it’s not as bad as it was when my ft4 was over range and my ft3 was lower. Thank you

SilverAvocado profile image
SilverAvocado in reply to Coachgeorge

You're very welcome :)

I agree with you, it's a waiting game and all we can do is have patience and stick it out. Hopefully you will be lucky, have a few more increases, raise that freeT3 up, and in a few months be back to your old self. Or at least 80% of where you were.

I'm also in bed a lot of the time. I've gone from being in bed all day 3 years ago to being out for a good amount of time each day, taking care of myself and a few things.

I suggest getting the bedroom set up so it's comfortable to spend a lot of time there. Get some Get a TV and make sure there is plenty to watch, a way to play music and audio books, plenty of drinks and snacks if you need them. Handicrafts if you are interested in those, I have crocheted several blankets!

Then just accept you are going to watch a lot of boxed sets and listen to a lot of things! There is a good side to this because there are enjoyable things to do, and I've found its important to find things to enjoy and ways to treat yourself, so it's not just a miserable grind all the time.

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