Test results

[Lo06]

These are my results

[SlowDragon Administrator]

So TSH is too high for someone on levothyroxine

Hardly surprising as you have been left on ludicrously small dose levothyroxine

See/contact GP and Request 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks after each dose increase

Print out these guidelines too to show GP

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request vitamin D, ferritin and thyroid antibodies are tested

[Lo06 in reply to SlowDragon]

Oh ok I don’t understand any of it lol it’s confusing

[SlowDragon Administrator in reply to Lo06]

Think of it like this ...

our thyroid controls our metabolism

As an example....if, when perfectly healthy, your own thyroid made the equivalent of 125mcg levothyroxine....and this metabolism is controlled by pituitary sending messages - TSH (Thyroid stimulating hormone)

Then as your thyroid starts to fail (usually due to autoimmune thyroid disease) ....you might get diagnosed when your thyroid has reduced output to roughly equivalent of 75mcg levothyroxine

Pituitary has noticed there’s a drop in thyroid hormones in the blood....(that’s Ft4 and, most importantly, the active hormone Ft3) ....so to try to make more thyroid hormone ...pituitary sends out stronger message to thyroid - TSH rises up

When GP starts you on 50mcg ....initially you feel a bit better ....as you have 75mcg from your own thyroid and 50mcg levothyroxine

But (here’s the bit some GP’s don’t understand)....levothyroxine doesn’t “top up” your own thyroid output.....well it does very briefly....but the pituitary very soon “sees” the levothyroxine in the blood....and TSH starts to drop

So at the end of week 6 ....TSH has dropped a lot. Your thyroid takes a rest ....has a holiday

So at this point you are now only mainly using the 50mcg levothyroxine....which is actually a dose reduction down from managing on 75mcg from your own thyroid before you started on levothyroxine

So you start to feel worse .....and are ready for next 25mcg dose increase in levothyroxine

Modern thinking ....and New NICE guidelines suggests it might actually be better to start on higher dose .....but many medics just don’t read guidelines ....and many patients can’t tolerate starting on more than 50mcg and need to increase slowly.

Starting on 50mcg and stepping dose up in 25mcg steps, retesting 6-8 weeks after each increase.

But we still very often (almost always) need to increase up to full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

So if you weigh yourself in kilo x 1.6 that’s the likely dose of levothyroxine you will need

Having been left on too small a dose for far too long it can be difficult to increase dose of levothyroxine up. It may need to be increased very slowly upwards

First to 50mcg per day ......wait 6-8 weeks retest

Then increase to 75mcg per day ....or if that’s too much too quickly 75mcg and 50mcg alternate days ......retest in 6-8 weeks again

Etc etc

Meanwhile it’s essential to get folate improved

Essential to test vitamin D and ferritin too

We need GOOD vitamin levels to help use levothyroxine correctly.

Being on too low a dose of levothyroxine frequently causes low vitamin levels

[Lo06 in reply to SlowDragon]

Thanks for this great advice! Also I’m really struggling to lose weight I’ve stayed the same weight now for 6 months cannot shift it I am very overweight x

[Lo06 in reply to SlowDragon]

Also how can I tell my doctor who is a professional this ? I just want to start feeling well again

[SlowDragon Administrator in reply to Lo06]

Say you have taken advice from NHS recognised support group Thyroid UK as you have ongoing hypothyroid symptoms

Say you have printed off copies of NICE guidelines and that they recommend patients on levothyroxine have dose increased up slowly in 25mcg steps until on somewhere around full replacement dose.....1.6mcg per kilo of weight

So if, for example you weigh around 9st 10lbs - that’s 62kilo x 1.6= 100mcg levothyroxine

Increase in levothyroxine may need to be done slowly, having been left so long on tiny dose. Maximum dose increase at any one time of 25mcg.

[Lo06 in reply to SlowDragon]

Ok fab thanks

[Lora7again in reply to Lo06]

He can't be that professional because he is keeping you under medicated. If he doesn't agree I would change doctors.