Coming off Levothyroxine?: Dear Everyone, I take... - Thyroid UK

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Coming off Levothyroxine?

UKGirl1966 profile image
22 Replies

Dear Everyone,

I take 50mcg of Levothyroxine a day. I am investigating the cause of my feeling so lousy all the time. headaches, fuzzy head, tiredness, joint and muscle aches, not sleeping.

My results are a little up and down but are generally within range. My last results showed very high FT4 but low (within range) FT3. I suggested increasing my meds slightly to try and raise the FT3 but my endo has just told me to come off my medication for three weeks so that he can see what’s happening and start from scratch. While this sounds like a good plan, is it advisable to just stop taking my levothyroxine? Does anyone have any advice/experience to share?

Thank you

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UKGirl1966
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SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts...

You have been left on totally inadequate dose levothyroxine for over 15 years

50mcg levothyroxine is only a STARTER dose

Previous post shows

So Ft4 is only 34% through range

Ft3 only 25% through range

You need 25mcg dose INCREASE in levothyroxine

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

If Endocrinologist won’t agree see different one

Email Thyroid UK for list of recommended thyroid specialist endocrinologists...

NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one. Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Levothyroxine doesn’t top up failing thyroid it replaces it

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

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.

Also here

cks.nice.org.uk/topics/hypo...

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...

fuchsia-pink profile image
fuchsia-pink

I'd say this was a bad idea. Don't do it! As SlowDragon says, you need a better endo x

JAmanda profile image
JAmanda

Yup move Endo. Thyroid U.K. keeps a list of friendly ones. Call one up locally and see if they'll take you on.

greygoose profile image
greygoose

my endo has just told me to come off my medication for three weeks so that he can see what’s happening and start from scratch.

I don't know why they do this! I suspect they get some sort of sadistic kick out of it! It serves no useful purpose. He can very well see what's happening from your last set of labs: you are obviously a poor converter. And restarting from scratch won't change that. So, he's obviously a sadist or very ignorant about thyroid.

I am investigating the cause of my feeling so lousy all the time. headaches, fuzzy head, tiredness, joint and muscle aches, not sleeping.

I would imagine that all those symptoms can be put down to low T3. T3 is the active hormone, and if it is too low, or too high, that is what causes symptoms like yours. What you need is some T3 added to your levo. But, your endo is probably trying to avoid giving you that, due to the cost, and is using this starting from scratch business to distract you and fob you off.

This man is never going to make you well, but could make you a whole lot worse. I would refuse to do it, if I were you, and insist that what you need is T3.

jgelliss profile image
jgelliss

I'm so so sorry how you feel and the Dr that you depend. Your symptoms are more than enough to deal with on your current dose. Why would your Dr want to make you feel even worse? I would run not walk away from this Dr. Your labs say your not on enough thyroid meds. Your cellular tells you your not on enough thyroid meds. Please look for a Dr that listens and understands how to dose you. Slowdragon has Excellent posts on nutrients. It would be very valuable to read them.

Wishing Wellbeing.

Cogsat123 profile image
Cogsat123

Seems like a low dose as SlowDragon says. I am on 125 ug of Levothyroxine but feel much the same as you do. I do wonder if Levothyroxine is very effective and wish I had the energy to get more advice and arrange to see private endo although as in your case not always the answer. Maybe the answer is to see if pharmacist or endo will look into trying an alternative med.

UKGirl1966 profile image
UKGirl1966 in reply to Cogsat123

It’s a minefield.I am taking the advice I am being given in this platform by educated and experienced people who understand the problems. I’m going to get a second opinion and to ask the next endo to increase my dosage and monitor me. Good luck Lorr. I hope you find the energy to investigate your problems further. I’m also going to investigate adding T3.

UKGirl1966 profile image
UKGirl1966

Dear All,I am taking your advice and am going to see another endo with the intention of asking him to increase my dosage and m it or me. If that doesn’t improve things, I will ask about adding T3. Thank you for your invaluable help.

Jeannie48 profile image
Jeannie48

I am not sure how long you have been taking the Levothyroxine, but it takes about 30 days for your body to really get going with it, and yes, 50 mcg is a starter dose, please consult with your Dr. and get re testested in about a month or 6 weeks, your physical symptoms are of insufficient thyroid dose, but might just want to give it some time, but no longer than 6 weeks, please update your Dr.

UKGirl1966 profile image
UKGirl1966 in reply to Jeannie48

Hi Jeannie, I have been taking this dose for many years. My symptoms started with menopause and have become increasingly worse. Thank you for your advice and for taking the time to share.

SlowDragon profile image
SlowDragonAdministrator in reply to UKGirl1966

How much do you weigh in kilo

Multiply kilo weight by 1.6 - this is the likely daily dose levothyroxine required

Will need to increase dose slowly upwards in 25mcg steps, as been left under medicated so long

UKGirl1966 profile image
UKGirl1966 in reply to SlowDragon

Thank you so much. I am seeing a new Endo this week and asking him to monitor the increase for me. So at 56 kg, I should be aiming for 90mcg?

SlowDragon profile image
SlowDragonAdministrator in reply to UKGirl1966

Yes so that’s 625mcg approx per week

75mcg 3 x week and 100mcg 4 x week = 625mcg

Which brand of levothyroxine are you currently taking

Initially increase to 75mcg daily

Retest 6-8 weeks later

Likely to need to increase dose to 625mcg total per week

75mcg 3 x week and 100mcg 4 x week = 625mcg

UKGirl1966 profile image
UKGirl1966 in reply to SlowDragon

Hello SlowDragon,Thank you for your advice. This is the brand I am taking currently.

Euthyroid
SlowDragon profile image
SlowDragonAdministrator in reply to UKGirl1966

Are you not in U.K.?

Some Merck levothyroxine contain mannitol

This upsets many, many people

Merck mannitol scandal

bmj.com/content/360/bmj.k714

sciencemag.org/news/2017/09...

UKGirl1966 profile image
UKGirl1966 in reply to SlowDragon

I'm in Cairo at present. Can you tell me a few brands that might be better? Oddly enough, the issues started when I changed brands. I put it all down to menopause. Perhaps it was the medication?

SlowDragon profile image
SlowDragonAdministrator in reply to UKGirl1966

Here in U.K. Teva contains mannitol....and causes great upset for many people

Definitely Worth trying different brand

UKGirl1966 profile image
UKGirl1966 in reply to SlowDragon

Do you think I ought to try the Eltroxin perhaps?

SlowDragon profile image
SlowDragonAdministrator in reply to UKGirl1966

Yes and get dose increase in levothyroxine too

UKGirl1966 profile image
UKGirl1966 in reply to SlowDragon

Hello SlowDragon, Eltroxine seems to be the only alternative here. I checked the ingredients and that seems to have lactose instead of mannitol.

helvella profile image
helvellaAdministratorThyroid UK in reply to UKGirl1966

Be careful - in the UK, Eltroxin is from Advanz Mercury Pharma (and is identical to their levothyroxine). But, in the rest of the world, Eltroxin is usually from Aspen and is a different formulation. (Could be different again in a few countries, such as India.)

Redonionsyummy profile image
Redonionsyummy

I hope you are doing better..any different Levothyroxine? I used to take natur thyroid, but it became so difficult and expensive to get, so I switched to levothyroxine 150 mcg. ..I take levothyroxine 100 mcg now..am 57yo..I suggest to examine food and exercise..I did an experiment with myself.. ate beans and lentils..more veggies..cutting out dairy (and at some point meat)..It made a huge difference in how I feel..I was going to try it for just one week, but felt so much better, I kept going..(it's been over a year now..check out 'physicians committee for responsible medicine' and 'nutritionfacts.org'...great science based research info.

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