Quick Question - Starting Levothyroxine - Thyroid UK

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Quick Question - Starting Levothyroxine

Cola4444 profile image
4 Replies

Hello folks,

Happy weekend and good morning.

On 25 mcg for first 4 weeks and now 50 mcg

for the past two weeks (I will have a full Thyroid panel in another 4 weeks, plus Vit.D, B12, Folate & Ferritin).

I'm feeling far worse now (more hypo) than before Levo in terms of fatigue, headaches on one side, general brain fog & now insomnia kicking in badly after 10 days on 50mcg.

Question: I know it's early days.. but did others experience something similar in the initial weeks on Levo ?

This insomnia is really impacting any quality of life (I'm taking magnesium & 5-HTP at night but not helping...

and have reacted badly to Melatonin in the past).

I will share the bloods in 4 weeks - and hopefully that will give some good data to go by.

I've been on all the main recommended supplements for the past 6 weeks (D, good B-complex, Ferritin, Selenium, Zinc citrate, Magnesium, Vit. K, good probiotic). Recently added NAC & 5-HTP

Thank you !

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Cola4444
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jrbarnes profile image
jrbarnes

I had half my thyroid removed when I was 27. For two years following I didn't take any medication until my TSH crept up to 5. I was started at 50mcg, then 75mcg, and finally 88mcg. I recall feeling a little tired on 50 and 75 but finally normal on 88mcg. I did not experience any of the symptoms you're having but when I do experience those symptoms it means my thyroid hormone is low. You should progressively feel better when you're on medication. It really does take 6 weeks for your body to fully respond and consistency is the absolute most important key. You need to call your Dr and tell them you cannot perform daily life functions and it's severely affecting your life. Always ask for a copy of your blood work and keep it. If you start feeling unwell then compare your previous tests with current ones. Most people feel better when the FT3 levels are 3.5 and above so if your FT3 levels are around 2.5 or 2 range at all and they're trying to tell you everything is okay then you need to call them out on that or go to another Dr. I played that game for the past 3-4 years while my health went downhill.

Cola4444 profile image
Cola4444

Thank you for sharing your own experience and view on FT3 levels.

From Feb-2020 to start of June mine were 2.89, 2.53 & 3.08 (my last test in July was TT3 & thus of no use).

I get the impression that around 3.8 could be optimal for people with Hashimoto's hypothyroid.

My full bloods in 4 weeks time should provide more info for future direction.

Big thanks !

SlowDragon profile image
SlowDragonAdministrator

Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Levothyroxine doesn’t top up your failing thyroid. It replaces it, so until on higher dose, yes can feel worse than before starting on levothyroxine

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

But ....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 in reality 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 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.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Cola4444 profile image
Cola4444

Ahhh very interesting & well articulated...

I wrongly assumed that my 50 mcg Levo would be topping up.

This feeling terrible right now could continue / get worse over the coming weeks.

I'll post full bloods in 4 weeks time.

Thank you SlowDragon.

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