whats will happen if I just stop taking Levo?

[Aejmarsh]

I'm on Levo and I just think that this medicine is a joke. For one thing, it hasn't worked for me. I told my GP and all she's done is jacked up the dose. Why are health-care providers so in love with this stuff ? I have a refill waiting to be picked up at the pharm and I'm thinking about leaving it there. Why waste money on this anymore ? What is a safe way to stop taking it. Should it be tapered down or can I just stop taking it?

[greygoose]

There isn't a safe way. You can't live without thyroid hormone, and that's what levo is. It's not medication in the way that aspirin is medication. It's replacing the hormone that your thyroid can no-longer make enough of.

It may not appear to be doing anything, but I think if you stopped taking it, you'd notice the difference pretty quickly.

Do you know what your doctor has been testing? Without seeing your lab results, it's difficult to pinpoint what is going wrong. It could be that you aren't absorbing it, you aren't converting it, you aren't taking enough yet. How much are you taking? Post your results, with the ranges, and let's have a look. Maybe we can see where the problem lies.

[bristolboy]

greygoose is right - post as much info as you have, and the wonderful people here will try to help you - don't stop taking the Levo.

" Why waste money on this anymore ?" Are you in the UK, and are you paying for your prescriptions? If you are in the UK, you shouldn't be paying. Get an exemption certification from your GP. But you may just have meant that all this is costing the NHS money? .

[Heloise]

Do you have another option? Some people do not utilize T4 because their liver refuses to convert it to T3 which is what you actually can use. Can you get a natural desiccated type which already had some T3?

To stop taking it easily would matter how large a dose and how long you have been taking it. If it's a small amount and you haven't taken it long enough for your body to depend on it I don't think it's that dangerous. The shelf life is two weeks and it take about six weeks for a full dose to be in your system and would also take time to break down so It wouldn't be that abrupt even if you totally stopped.

[silverfox7]

From when you were diagnosed has your doctor been recdoing bloods every 6 weeks until you are on the correct dose? I'm suspecting your GP is not up to speed with dosing and although it's possible thatcincreasing the dose was the correct thing to do it it should be better monitored.

Ask for a copy of your latest results and the ranges and post both along with any symptoms you have and a little more of thyroid journey so far. The ranges are very important as they differ from lab to lab so we would be guessing without them which isn't scientific!

Also have a look at the Thyroid U.K. site. They run this forum for HealthUnlocked. There is lots of info on there so may be something, through no fault of your own, you aren't doing properly. Shout out if anything you don't understand.

[silverfox7]

Whoops! Forgot to say welcome to the forum!

[Hermits]

I saw an endo who happily told me 40% of patient's don't get well well on levo. But don't worry it will keep you alive. I discovered NDT and live very well.

[SlowDragon Administrator]

First how much Levothyroxine are you currently taking?

Frequently people are left on too small a dose

Can you add your most recent blood test results and ranges for TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

Ask GP to test vitamins and antibodies if not been done

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

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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?

Getting Levo dose high enough to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range and all four vitamins optimal is first step

Stopping Levothyroxine could make you extremely unwell

[Angel_of_the_North]

If you have hypothyroidism and stop taking levo and don't replace it with T3 or NDT, you will gradually become more and more hypo. You will be at risk of heart failure and won't be able to think straight. Before thyroid hormones were discovered, people with hypo slowly went mad/demented and were locked up in asylums to die slowly.

[Hidden]

I also asked this question recently and got the same advice. Possibly unlike you, I wasn't experiencing any hypo symptoms beforehand so it came as a bit of a surprise when the doctor told me that one of my blood numbers wasn't good. Been on 25mg then 50mg levothyroxine since this time last year and haven't noticed any change at all. Apart from a distinct lowering of libido ? But my last blood numbers were a step in the right direction according to my doctor. A couple of months ago I just stopped taking levothyroxine for a month to see if I could feel any difference.....absolutely none.

So taking the advice given here, I'm still taking levo and waiting for my next blood results...but I'm researching as much as I can. "Show me the science"... the war cry of a true sceptic !

[Hidden in reply to Hidden]

"Been on 25mg then 50mg levothyroxine since this time last year and haven't noticed any change at all. Apart from a distinct lowering of libido?"

Sounds as if you need an increase in levo, Hidden ! And why have they kept you waiting a year before testing your levels?!!!

50mcg is very little, usually a starting dose. You should have had a blood test every 6 weeks or so until symptoms improved, TSH was below 1 and your Thyroid hormones (FT3 and FT4) near the top of range.

I started on 25 too and am now up to 100 mcg and still getting symptoms! My last TSH was under 3 but still didn't feel brilliant. Don't know about libido as I'm single, just want to have more energy for ordinary living!

Get a printout of your last results with reference ranges and start a new thread. The docs probably said you were fine when your results were within so-called "Normal" range

[SlowDragon Administrator in reply to Hidden]

As Hidden says......50mcg Levothyroxine is only a starter dose

Bloods should be retested 6-8 weeks after each dose increase and dose increased in 25mcg steps (retesting each time) until TSH is between 0.4- 1.5 and FT4 towards top of range and FT3 at least half way in range

Essential to test vitamin D, folate, B12 and ferritin. These are frequently very low when under medicated

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)

List of hypothyroid symptoms

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

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

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

[Calends]

I guess this: everydayhealth.com/hs/hypot...

But you know, somedays I look at that little Synthroid pill and I wanna throw it out the window, so I understand some of your frustration.