started T3 with already low TSH

[Needlehaystax]

hey there - my endo started me on T3 on the 6th march off the back of my December bloods:

TSH 3.48

Free T4 17.8

T3 3.5

In the interim I got my February bloods back after I started taking the T3:

TSH: 0.87 (0.35 - 4.94 mIU/L

T4: 16.5 (9.0 - 19.1 pmol/L

T3: 3.8 ( 2.4 - 6.0 pmol/L

After him advising me start on 10mcg in the morning..I have cut that down to 2.5mcg morning and afternoon. I’m waiting to hear back from him in next steps.

Last night and today I’ve felt a bit sick out and had a fluttering heart a tiny bit..but I’m a bit work stressed so hard to tell if it’s just that.

My naturopath has just worried me and said that perhaps I should t have started the T3 as my TSH was low and could end up dangerously suppressing it, by which point she said that T3 meds won’t be an option?

I’m now worrying slightly and would love some insight if I’m ok still medicating with T3 as I clearly still have conversion issues. I’m about to go away with work and I’m worried I may get worse. I’ve been ok, apart from yesterday and today and a bit of lethargy but that could be stress. ???

many insight would be welcome

[SlowDragon Administrator Ambassador]

How long have you been taking 2.5mcg twice day

You can increase to 5mcg in morning after first few days

Then similarly increase pm dose to 5mcg

Taking T3 almost always lowers TSH

That’s “normal “

When did you last test vitamin D, folate, ferritin and B12

[Needlehaystax in reply to SlowDragon]

Thanks. I’ve been taking 2.5mcg am and pm since the 10th March. I know lowering of TSH is normal but is it possible to go hyper if I started at a TSH of 0.87? Should he have started me in t3 if my labs were that low? My worry is he was going off older bloods from December and in the mean time my Feb bloods came back with much lower TSH but still had bad conversion ratios.

I tested other vitamins at the beginning of Feb:

Vit D: 120 ( >50 nmol/L)

b12: 101. (>70 pmol/L)

Iron: 13.2 (9.0 - 30.4 µmol/L)

Ferritin: 67 (15 - 150 µg/L)

[SlowDragon Administrator Ambassador in reply to Needlehaystax]

Iron still very low

What iron supplements are you taking

Low iron/ferritin lowers TSH

[Needlehaystax in reply to SlowDragon]

Ferrous fumerate from the doctor 210mg with Vit C every other day as was told that helps absorption and always on an empty stomach

[humanbean]

My naturopath has just worried me and said that perhaps I should t have started the T3 as my TSH was low and could end up dangerously suppressing it, by which point she said that T3 meds won’t be an option?

The problem we all have is that doctors think that people with a low or suppressed TSH must have extremely high levels of thyroid hormones, no matter whether they are hypothyroid or hyperthyroid.

People who are hyperthyroid have thyroids that are capable of producing lots of thyroid hormones. But people who are hypothyroid do not.

So, if someone is hyperthyroid and has a TSH of 0.001 their levels of Free T4 and Free T3 could well be astronomically high.

But if someone is hypothyroid and has a TSH of 0.001 their levels of Free T4 and Free T3 might be high in range or only very slightly over-range.

This is why nobody should be using TSH to monitor the thyroid . The active thyroid hormone is Free T3, not TSH. And TSH is not from the thyroid anyway - it is produced by the pituitary.

TSH is useful when a patient has never been treated for a thyroid disease and in that scenario TSH is useful for initial diagnosis. But after that, it isn't very useful to anyone.

Please bear in mind that I'm not a doctor, I'm a hypothyroid patient.

[Needlehaystax in reply to humanbean]

Thanks that’s very interesting and insightful!!

[humanbean]

If I take my comments a step further...

How can a hyperthyroid patient have a TSH of 0.001?

They could have Graves Disease, they could have nodules in the thyroid that produce thyroid hormone, they could be being treated with too low a level of thyroid hormone suppressing drugs, or they were born with a large thyroid.

How can a hypothyroid patient have a TSH of 0.001?

They could have Hashimoto's Thyroiditis/Autoimmune Thyroid Disease that is temporarily running rampant, they could be over-treated with Levo and/or T3 and/or NDT, or they might have a pituitary that is incapable of producing sufficient TSH for the patient's needs so the thyroid is not adequately stimulated, or they were born with a small thyroid.

I'm sure my lists of reasons for a TSH of 0.001 are missing some possibilities.

[Needlehaystax in reply to humanbean]

Is that safe and acceptable to have a TSH at 0.001? I’ve had endo’s wince at me being 0.13 before but I understand that perhaps not all endo’s understand?

[humanbean in reply to Needlehaystax]

Is that safe and acceptable to have a TSH at 0.001?

No. But I was just using it as an example of why and how it could happen, and how doctors react to seeing it on a page.

[greygoose in reply to humanbean]

It's safe but not acceptable to the medical community. We patients couldn't care less!

The TSH has only two jobs;

- it stimulates the thyroid to make more hormone when levels are low

- it stimulates the deiodinase that convert T4 to T3.

If you are on thyroid hormone replacement, you do not need it for the first. And whilst you might become a poor converter with a low TSH, it's a choice between two evils: be under-medicated on T4 and low T3. Or, have low T4 and low T3. If you're taking T3 as well as levo, you don't need the TSH for conversion, either..

When the pituitary senses that you don't need TSH any more - or sometimes even if you do - it will stop producing it. Why waste energy producing something you do not need? I think we can therefore conclude that TSH has nothing to do with hearts or bones. If you still needed it for those reasons, the pituitary would carry on making it.

[greygoose in reply to greygoose]

By the way, it's not a low TSH that makes you hyper. The TSH just follows the thyroid hormone levels, and the problem - one of them - with TSH is that you can't get a reading below zero.

Being hyper is having a very, very high FT3, well over-range, long term. And very, very high FT4, well over-range, long term. And if both of those are very, very high, the TSH is obviously going to be suppressed. And I just don't know why doctors can't get their heads around that. It's not rocket science!

[waveylines in reply to greygoose]

Beautifully stated as usual Greygoose! One GP told me in true telling off style that the TSH IS what they are taught to go by and he doesn't care what my Ft3 & Ft4 levels are if the TSH is suppressed I am over replaced. I was told not to speak but listen. I did as told. He told me until your TSH is back in range we will not prescribe you any thyroid medications but once it is we will do shared care (am under nhs endo who didnt sgree with said GP). Still wasnt allowed to speak. Sometimes it's best just to walk away.... I was listening. He wasn't prepared to do so.

[janeroar]

My TSH is low it often says on blood results that it’s undetectable. I’m doing generally well. I take T3 so with the help of this community I’ve learned that this is going to happen and that other stuff such as iron levels and vitamin D, going gluten free etc are more important factors for optimal health.

[Milburn13]

I had a low tsh when I started T3, when I was still ill with hypothyroid symptoms and my T3 level was low. Your T3 level is low. T3 is good for the heart. However unlike T4 which is a storage hormone, t3 is an active hormone, so it will be a bit of a shock to the system, which leads to most people getting symptoms like palpitations, panic feelings, etc in the first 1-2 weeks. Building up the dose gradually over the first 2 weeks reduces these symptoms and then they should hopefully go away. I had Atrial Fibrillation symptoms with Levothyroxine and these went away with T3. I only became well when my T3 was close to the top of the range & my tsh is slightly below range but my thyroid doc says this is ok as long as my T4 and T3 are within range.