TSH levels on Levothyroxone now too low?? - Thyroid UK

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TSH levels on Levothyroxone now too low??

Jr1885 profile image
11 Replies

Hi,I was recently diagnosed as subclinical hypo.

I have been on levothyroxine since Nov 18. My last results on 50mg came back as TSH 6 and T4 16. They said that's was ok and to monitor. Butbi was still feeling tired and symptoms present. They agreed to up dose to 75mg. Had blood test the other day after 6 weeks on increase. TSH is now 0.29, which they have said - normal no further action needed. They didn't measure T4.

The GP told me that my TSH just needed to be under 4. Obviously this is a lot lower and lower than 0.5 on the range. Does anyone know is this really ok or should I go back to my GP and query it? This is all very new to me and feel like the GP don't give any advice

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Jr1885
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11 Replies
greygoose profile image
greygoose

Your GP doesn't know what he's talking about, so any advice he might give would be dubious at best.

He should not just be testing the TSH. It tells him nothing much. It's not even a thyroid hormone, it is a pituitary hormone. If he wants to know if you have enough thyroid hormone in your blood he should test the thyroid hormones, T4 and T3.

You hare hypo with a TSH of 3, so just getting your TSH 'under 4' isn't good enough - don't be taken in by this 'subclinical' tosh. Hypo is hypo - and a TSH of 6 is hypo. The idea that you have to wait until it gets to 10 to 'prove' you're hypo, is just an NHS ruse to cut down on costs.

So, no, your TSH is not too low, it is pretty much meaningless. But it certainly doesn't show that you are adequately medicated, either. How do you feel on 75 mcg levo?

Jr1885 profile image
Jr1885 in reply togreygoose

Thank for you reply.

My diagnosis of being hypo was based on results of:

TSH 14.4 and T4 12.2 with symptoms which led me to visiting GP. They said i was subclinical as T4 was still in "normal" range.

I feel ok. Less tired,I am on half hours at work and was hoping to increase again soon, so I guess only time will tell with how I actually feel.

greygoose profile image
greygoose in reply toJr1885

A TSH of 14.4 is not subclinical in anybody's book! It is really hypo. And, your FT4 was probably in-range by 0.2, I imagine. Honestly, these doctors just have no idea! Subclinical actually means 'over-range results with no symptoms'. So, if you went to the doctors because of your symptoms, you were hardly subclinical, were you.

So, now you have to take care that you're not under-medicated. And, to do that, you will probably have to do private testing of TSH, FT4 and FT3, and antibodies - with other things if possible - because your doctor doesn't know enough about thyroid to understand the importance of the other tests. That will probably be the only way you can get well.

Also, you could have nutritional deficiencies - hypos often have - which will also make you feel bad. So, you need to get your vit D, vit B12, folate and ferritin tested.

And, please, when you post results, include the ranges - the numbers in brackets after the results - because they are necessary to interpret the results, but vary from lab to lab. :)

Jr1885 profile image
Jr1885 in reply togreygoose

Sorry the normal ranges from the lab were TSH 0.5-4

T4 12-24

I will definately look at private tests then,would I then use these to go to GP for dose to be amended if needed. - do they actually pay attention to the private tests?

Thank you for your advice much appriciated

greygoose profile image
greygoose in reply toJr1885

Some doctors do, some don't. It depends on the individual. But at least if you know, you've got a head start.

SlowDragon profile image
SlowDragonAdministrator

Well how do you feel? Improving or still symptomatic?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

If low, these frequently need supplementing to bring to optimal levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Ask GP to test vitamins and thyroid antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

* This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Jr1885 profile image
Jr1885 in reply toSlowDragon

Thanks for that.

I have had my tests in the morning both times since taking the meds. But I have normally had my days dose and breakfast by then. I was never advised not to take the days meds before the test so that's interesting.

My vits all came back fine and celiac was looked at as my mum has that,but that was all clear.

They have never discussed anti bodies. They just looked at the TSH and T4.

May look at private so I actually get a proper diagnosis and what happens next.

Like now - no further action- do I just never have any follow up blood tests I'm very disappointed and confused by aftercare/ advice. Hence turning to this forum for help

markwsteele profile image
markwsteele

My doctors / lab are a pain the in backside when it comes to results...if my TSH hits the upper end of the reference range (4.2) then they don’t test my FT4. 🤬

Hay2016 profile image
Hay2016 in reply tomarkwsteele

Yep reflex testing built into the tracks software. Tsh in range good to go!!! If relevant clinical details put on forms or computer it may be done. But that relys on gp bothering to give details.

markwsteele profile image
markwsteele in reply toHay2016

GP always asks...lab ignore requests though.

Jr1885 profile image
Jr1885

Should my GP have told me about the test times and fasting etc as this was never told to me. And all my tests have been after food and meds.

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