New to Levothyroxine- advice please!: After my... - Thyroid UK

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New to Levothyroxine- advice please!

rustysmum profile image
17 Replies

After my numbers yo yoing around for several years my last blood test showed a TSH of 7.78, the highest ever so GP finally agreed to me going onto Levothyroxine. Have got Mercury brand. Just wanted to check as I have been on it for 4 days and have felt exhausted every day (sleeping like a log at night at last), getting hot flushes and dull headache. Also quite a few skipped heartbeats. Am only on 25 micro grams so wasn’t expecting much effect yet. Anyone else had these side effects? How long are they likely to last for? Thank you!

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rustysmum
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SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts you have been hypothyroid a long time

Standard starter dose of levothyroxine is 50mcg unless over 65

Starting on too low a dose can cause symptoms. Levothyroxine doesn’t top up failing thyroid, it very quickly replaces it, so it’s important to get dose increased up as fast as tolerated

Bloods should be retested 6-8 weeks after each dose increase

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

Presumably you have been keeping vitamins at optimal levels by supplementing

When were vitamin D, folate, ferritin and B12 last tested

As you have Hashimoto’s are you on strictly gluten free diet

rustysmum profile image
rustysmum in reply to SlowDragon

Thank you so much Slow Dragon. That explains it then. I seemed doomed until after my next blood test on March 16th. Maybe Gp is maybe working on old info as I am 59, but perhaps it was because I had bad heart palpitations during menopause that they were being more cautious.Thank you for the advice about the blood test which I always follow when being tested.

Am just about to order the Thriva test to check on my vitamin levels as GP won’t do these and last had them done privately over a year ago. I am taking Vitamin D3 with K2, a B complex and selenium regularly.

I have tried the gluten free diet a couple of times in the past. As you rightly say I have been having issues for a long time now . However, it never seemed to help any of my symptoms so had stopped. Maybe I should try it again now.

Any advice on anything else I can do whilst waiting for my blood test and then hopefully dose increase? This has all come as such a shock as I had been feeling really well until I started these tablets and had expected my bloods to come back fine now fully through the menopause and feeling so much better.

Thank you so much for your help.

SlowDragon profile image
SlowDragonAdministrator in reply to rustysmum

Come back with new post once you get vitamin results

Remember to stop taking vitamin B complex a week before ALL BLOOD TESTS as biotin can falsely affect test results

rustysmum profile image
rustysmum in reply to SlowDragon

Thank you. Will do!

jsy_girl profile image
jsy_girl in reply to rustysmum

I actually would ring your GP back and say to them that you’ve since read the NICE guidelines are to start on 50mg because with your blood test not being until March you’ve got plenty of time to stabilise on 50mg and can he/she increase the dose?

But that’s just me - it’s just prolonging you feeling rubbish otherwise.

Link to guidelines:

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

jsy_girl profile image
jsy_girl in reply to jsy_girl

Actually guidelines state for subclinical thyroid to start levo, and under guidelines for levo it says starting dose would be 1.6mg per kg of body weight.

@slowdragon where did you get the 50mg from?

helvella profile image
helvellaAdministratorThyroid UK in reply to jsy_girl

The dosing of thyroid hormones is usually in micrograms (mcg) - not milligrams (mg). :-)

But the dosing of desiccated thyroid is usually milligrams (mg) or grains.

The document linked below says it all, I hope:

dropbox.com/s/q00vyt5703f4u...

jsy_girl profile image
jsy_girl in reply to helvella

Yes sorry - all my references should be mcg

SlowDragon profile image
SlowDragonAdministrator in reply to jsy_girl

Yes guidelines recommend starting at full dose, but many people can’t tolerate starting at more than 50mcg

.....but having been clearly hypothyroid with Hashimoto’s for several years, (and GP refusing to treat) she will need to start slowly and increase slowly upwards

helvella profile image
helvellaAdministratorThyroid UK in reply to SlowDragon

For one example, I am still not at the dose my weight would indicate according to that 1.6 micrograms per kilogram formula.

If I had been dosed like that, I would have started off being over-medicated. Which is surely crazy?

I am happy enough at the idea of starting at a higher dose than 25 or 50 micrograms - but why even target 100%? I suggest that there might be somewhere in the middle which starts off lower (e.g. 50) but allows for very rapid increase to somewhere like 80 to 90% of expected dose. Then slows right down.

No science. No research. Just seems logical to me.

SlowDragon profile image
SlowDragonAdministrator in reply to helvella

I agree that probably the majority of Hashimoto’s patients can’t start at anywhere near full dose .....some struggle to even tolerate 50mcg

A few have to start on 25mcg

but the guidelines can be EXTREMELY helpful if GP won’t increase dose higher than 75mcg (or even higher than 50mcg) a few months down the line ....as we see happens 100’s or 1000’s of times on here

If someone still has fatigue, hypothyroid symptoms and TSH over 2 they are almost certainly under treated

If someone still has fatigue, hypothyroid symptoms and TSH under 2 then they need Ft4 and Ft3 tested.....if Ft4 and Ft3 are low in range ....they are almost certainly still under medicated

If someone still has fatigue, hypothyroid symptoms and TSH under 2 they need Ft4 and Ft3 tested.....if Ft4 is high in range and Ft3 is low in range ....they have poor conversion. Likely low vitamin levels/Hashimoto’s/gluten intolerance etc

SlowDragon profile image
SlowDragonAdministrator

It takes 3-4 weeks to start to notice improvements, then as your body gets ready for next increase in dose at 6-8 weeks you might start to feel slightly worse

Getting bloods tested and ready for next 25mcg dose increase

It takes approximately 6 weeks to have effect , keep going

SlowDragon profile image
SlowDragonAdministrator

Suggest you reread all these replies

rustysmum profile image
rustysmum in reply to SlowDragon

Thank you. I have. The joint pain was a new symptom though so just w@need to check especially as I am at the 8 week mark now and other symptoms had settled.

SlowDragon profile image
SlowDragonAdministrator in reply to rustysmum

Likely due to being on far too low a dose

Should improve as dose is increased several more times over coming months

rustysmum profile image
rustysmum in reply to SlowDragon

Thank you, that is good to know 😊

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