Stopping Medication Advise: Hi Guys, I was... - Thyroid UK

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Stopping Medication Advise

Dinjo profile image
51 Replies

Hi Guys,

I was diagnosed about 5 years ago with an underactive thyriod.

Was on eltroxin and didnt agree with me and swicthed to Thyriod-S which worked fine.

I take 3x Thyriod S daily.

I have noticed that when i dont take/run out of my Thyriod-S i feel alot better.

I have a fasting blood test coming up next week, i have been getting healthier and losing weight by excersize and diet.

My question would be should i stop taking the Thyriod-S until my results come back when im test next Wednesday. Can Thyriod issues go away / be cured ?

Should i continue to take my Thriod-S even do i do not feel good on them until i get tested?

Thanks

51 Replies
Jaydee1507 profile image
Jaydee1507Administrator

If you don't feel good on your current dose you need to look at why that might be. Perhaps you need a dose adjustment or your vitamins are at less than optimal levels meaning that what you are taking is not being effective.

What were your latest results for ferritin, folate, B12 & D3? Sometimes a helpful GP will test these for you, otherwise private tests are available, see link with companies and discount codes. thyroiduk.org/help-and-supp...

If your fasting blood test coming up includes a thyroid function test it won't be accurate if you stop taking the NDT now. Why do you think you might need to stop taking the NDT before the test?

Unfortunately once diagnosed thyroid disease does not go away. You were diagnosed 5 years ago, likely had hypothyroidism long before that diagnosis. Your thyroid has lost its function and a while ago you had a TSH of 20. The evidence is pointing to the fact you need thyroid hormone to be well.

Dinjo profile image
Dinjo in reply to Jaydee1507

Thanks, so should i just go back to taking them and wait till my results come back ?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Dinjo

You haven't explained what the test is for or why you feel the need to stop the Thyroid-S. Once on thyroid treatment it is for life, and if you do stop it can be difficult to restart again especially if vitamins are low.

Dinjo profile image
Dinjo in reply to Jaydee1507

Its full fasting bloods which will include Thyriod Test. Its just i feel better not taking them, maybe your right and i need to adjust my dose. GPs here in ireland are againts NDTs for whatever reason, they always reccomend me take Levothyroxine

Jaydee1507 profile image
Jaydee1507Administrator in reply to Dinjo

You might feel better for a short period of time, but if you continued without the hormones you would undoubtably become extremely ill and it would take you a long time to recover once you restarted the hormones.

Its very common probably in many countries, including here in the UK that NDT is frowned upon, but people still take it as it helps them. You just have to be at peace with that and its always best to be honest with your doctors.

The vitamins thing is also really important. You haven't addressed those yet as far as I can see anyway. You likely have either deficient or low vitamin levels which can play into your symptoms and add to them. Also you wont be getting the most out of your NDT with low vitamin levels. It really doesnt matter if you have the best diet in the world as you just cannot absorb the vitamins well. If you want to feel the best you can then you need to get them tested and post the results here in a new post.

Dinjo profile image
Dinjo in reply to Jaydee1507

Thanks. Have not tested Vitamins before, what exactly should i be looking for testing wise

Dinjo profile image
Dinjo in reply to Jaydee1507

Forgot to mention should i give Levo a chance again so the doctor can prescribe the right dosage and monitor, i do know my experience before with levo was horrible

Jaydee1507 profile image
Jaydee1507Administrator in reply to Dinjo

Do you have any blood results from when you were on Levo? It would help to make a better assessment rather than guessing. Often doctors don't prescribe us enough Levo so it never gets a chance to work properly. 10-20% of the population don't convert well though and do better on something with T3 whether thats T3 + T4 or NDT.

You would need testing for ferritin, folate, B12 & D3. Make a new post when you have the results stating your level and the reference range for each test - number in brackets after your result. People will then comment and recommend the right supplements.

Dinjo profile image
Dinjo in reply to Jaydee1507

I dont i am afraid, been on thyroid-s about 3/4 years now

Jaydee1507 profile image
Jaydee1507Administrator in reply to Dinjo

Probably best to stick with what you have now as switching is quite an upheaval. Let us know when you have the vitamin results.

tattybogle profile image
tattybogle

it's a fairly common thing for some people to notice they feel better for a little while if they stop taking their thyroid hormone replacement .

This may last for a few days, or a few weeks, or even a few months ..... but then they crash (often suddenly and badly) , into feeling really hypothyroid again and even after they re-introduce thyroid hormones it can take some of them many, many months to begin to feel even remotely ok again .

So unfortunately 'feeling better when you stop' is not an indication that you don't need it at all .

Not everyone gets this feel good phenomenon if they stop .. i don't ..... i'm dragging myself around and grunting monosylabically with in a few days if i run out .

Lalatoot profile image
Lalatoot

It was 3 months of feeling fantastic for me. It seems to be a common thing when we stop or all but stop thyroid hormones that you feel great for a period of time .At around the 3 month mark I became very ill and very hypo. It took me years to recover even once I was back on proper doses.

Take care if you do stop. Monitor your symptoms and your hormone levels.

Dinjo profile image
Dinjo in reply to Lalatoot

Thanks didn't know this was common. I will start to take them again

greygoose profile image
greygoose in reply to Lalatoot

I felt great for six months. Almost convinced myself I'd been misdiagnosed. But, then, started putting on weight rapidly - that has always been my worst symptom. Got my thyroid tested and my TSH was 40+!

Dinjo profile image
Dinjo in reply to greygoose

Honeslty its what im thinking too when i stopped taking them

greygoose profile image
greygoose in reply to Dinjo

Yup, I think that's pretty common. :)

Buddy195 profile image
Buddy195Administrator

Can you share your most recent thyroid blood test results with us Dinjo (TSH, FT3, FT4)?

As others have said, there is a huge risk with stopping thyroid medication. I only began to feel well when both my thyroid medication & key vitamins were optimal. Many members with hypothyroidism (myself included) testify that they feel best with TSH significantly under 1.

Dinjo profile image
Dinjo in reply to Buddy195

This was from 12 months ago, going for another test next Wednesday

TSH
Buddy195 profile image
Buddy195Administrator in reply to Dinjo

I definitely would not stop thyroid medication Dinjo, as you are in danger of being very poorly medium to long term. Have you also results for key thyroid vitamins (ferritin, folate, B12, Vit D)?

Dinjo profile image
Dinjo in reply to Buddy195

Not yet but just ordered the test for these

Charlie-Farley profile image
Charlie-Farley in reply to Dinjo

Hi Dinjo

😱 those results are terrible. A TSH of 20 is not acceptable your T4 is dragging along the floor and your T3 is not even mid range.

As the others have said stick on the hormone replacement - this is for life. The most important thing is to optimise your thyroid, hormones and your vitamins and minerals to get the best out of things and a good deal of self-care.

Have a read of my bio which sits behind my face in my profile. It’s a case study and it covers a lot of the misconceptions that doctors have (and patients) and will also explain how I got onto full therapeutic dose. I’m feeling great now, but when I found this forum, I was very ill and not wanting to live. I had just gone through 10 years of looking after my parents as they declined and then got diagnosed - and medically mismanaged.

I’ve got a good quality of life and I am pacing myself because one thing - I have lost my overdrive!- but wow so much better. If you haven’t already, fill your bio in because when you come here with questions, it can be useful for us to refer to it. And if you are helping someone who’s situation relates to yours just point them to your bio - saves typing 😂👍

Mention any other health issues because they will have an impact.

dontforgetcortisol profile image
dontforgetcortisol

what do you mean by "better" ? x

Lalatoot profile image
Lalatoot in reply to dontforgetcortisol

Symptoms disappear. You feel back to your old self.

Dinjo profile image
Dinjo in reply to dontforgetcortisol

Just feel better, no dry mouth, or feeling cloudy in the head if that makes sense :)

dontforgetcortisol profile image
dontforgetcortisol in reply to Dinjo

Oh OK, so does the NDT give you a dry mouth and brain fog? What are your levels? It sounds like maybe you're not optimal x

Regenallotment profile image
Regenallotment

Weren’t there some dodgy batches of Thyroid S where people felt unmedicated (or under medicated). They were sharing batch numbers if you do a search. 🌱

Dinjo profile image
Dinjo in reply to Regenallotment

Really ? Thanks will search

Dinjo profile image
Dinjo in reply to Dinjo

i am on the following batch TA22012. Looking at this post i see others having issues simlar to mine. healthunlocked.com/thyroidu...

Not sure what to do now, do i stop taking them and wait till next order comes. I do have Levo that i could take but not sure if that will do more harm

Regenallotment profile image
Regenallotment in reply to Dinjo

try tagging the folks with the thyroid S posts…. If you type @ and then their name eg @regenallotment it tags them and they should see it in their alerts, although we’ve noticed it doesn’t always alert. Hope you find a solution 🌱

Trina64 profile image
Trina64

Do not stop! Stay the course and get your labs done. It is better to tweak your dose then crash and start all over.

Steni profile image
Steni

if it was me I’d have the test done without taking the meds / maybe you’ll find your levels are ok ? I did the same thing once when I had no medication because I’d left it another country and was without it for a month - I felt fine ( I thought ) but when the results came back which I’d booked to coincide with my return before starting the meds - the results were off the scale , the doctor even PHONED !!! I desperately did need the medication.

Charlie-Farley profile image
Charlie-Farley in reply to Steni

Not recommended Steni - have a read of the lived experience further up the string. 👍

Steni profile image
Steni in reply to Charlie-Farley

Thanks for writing but I already shared my lived experience further up the chain - it might be this you’re referring me to! Having said that I got over it , no one died or came close to it so nothing lost , just confirmed that I really did need the meds .

Charlie-Farley profile image
Charlie-Farley in reply to Steni

After everything I have read on here and my own experience, the only advice I would give is “get back on your meds as a matter of urgency”. I was undermedicated (by doctor) for six months and I crashed. 😱 It was the worst experience of my life, and I was contemplating suicide it affects you mentally as well as physically. I was physically incapable and mentally incompetent. I couldn’t even make a cup of tea.

Steni profile image
Steni in reply to Charlie-Farley

Thank you , as you can see from the chain above though , it’s not me looking for advice , the poster is named at the top of the page .

Charlie-Farley profile image
Charlie-Farley in reply to Steni

“if it was me I’d have the test done without taking the meds / maybe you’ll find your levels are ok ?”

It’s just this comment, I’m taking issue with Steni.

there is no way I would advise anyone to stay of medication to see what happens in a test

Steni profile image
Steni in reply to Charlie-Farley

Yes and you have made that very clear to the poster person in your reply which I’m sure they will have read so don’t worry your advice I’m sure will have been considered along with the rest .

tattybogle profile image
tattybogle in reply to Steni

Hi Steni, while you didn't feel unwell without medication for a month, (and it was only the blood results that alerted you to the need to restart)

it's very important to add the caveat that for some people ,a month off all thyroid hormone would have severe and quite long lasting consequences. (eg for me, 10 days of no thyroid medication means i'm not safe to drive and can barely cross the road safely as a pedestrian , i would have to take time off work to conduct this experiment for just 10 days , let alone a month)

To really see how the thyroid is capable of performing 'on its own' you need (at the very least) 6 weeks off all medication. , but being off medication for this long could take some people a VERY long while to recover from even once it was restarted .

So i take your point that coming off it is an effective test to confirm you really need it .. but it is a big gamble and therefore important to make sure this is clearly pointed out when it is suggested to someone on the forum ... there is no way of knowing in advance whether the person trying it will be fine like you were ,or will end up very unwell for months and loose theri job / crash their car,

Steni profile image
Steni in reply to tattybogle

I couldnt agree more ! That’s what I was saying !

Steni profile image
Steni in reply to tattybogle

I honestly do have to ask though has anyone ever been understood or believed or sympathised with when their Thyroid has been out of whack ? I can’t imagine anyone taking me seriously if I told them I couldn't go to work or was going to crash my car because of it - for sure I now know I need the meds to stop me feeling terrible but how do people describe their symptoms in a way that makes people understand? The symptoms have never seemed to me to be observable or measurable as they seem to be based on ‘ feeling ‘ things and there are so many illnesses that are not down to interpretation but can be verified by an onlooker and therefore allowed for . So much about Thyroid issues seems to be in the mind .

tattybogle profile image
tattybogle in reply to Steni

it's pretty obvious to onlookers that there is something very 'wrong' with me if i stop all replacement .. or if the dose is much too low .

they wouldn't know 'what' was wrong , as most people don't immediately think of 'thyroid' in relation to anything ,but a common assumption has been that i've have a drink or 6 .. or am diabetic and need an urgent biscuit .

Steni profile image
Steni in reply to tattybogle

Interesting - I’ve always wondered how it would manifest itself if it was left untreated . I can hear from what you’re saying that the effects would be considerable.

RedApple profile image
RedAppleAdministrator in reply to Steni

Steni, ' I’ve always wondered how it would manifest itself if it was left untreated '

I'm amazed that you've been on this forum all these years and are apparently unaware of the visible signs of hypothyroidism! This very old paper by Richard Asher says it all. Scroll down a couple of pages in this PDF, which has been posted on this forum a number of times over the years. ncbi.nlm.nih.gov/pmc/articl...

Also, member Lalatoot has posted her very own before and after facial photos.

Granted, most people wouldn't know what was wrong, but anyone that knows you well should be able to see that something isn't right.

Steni profile image
Steni in reply to RedApple

Thank you I haven’t read this paper before . I have been on the forum for years but so many of the symptoms described are the fat, tired sort but I thought the other symptoms were largely .invisible to the onlooker . I will see the posts you mention with interest! Thank you

Valeriu profile image
Valeriu

If you intend to stop.... you need to have 6 weeks of same dose of Thyroid S before you test....Then leave 15 -18 hours between the Thyroid S and the blood test; I would stop gradually and slowly Good Luck :)

Charlie-Farley profile image
Charlie-Farley in reply to Valeriu

Please don’t give advice on stopping because once people are on thyroid medication, except in unusual circumstances after operations, this is a lifetime therapy. People can be made very ill by stopping

Steni profile image
Steni in reply to Charlie-Farley

I ABSOLUTELY did NOT give advice to stop . I said ‘ IF ‘ it was ME !

Dinjo profile image
Dinjo in reply to Steni

I stopped taking meds and now my cat is barking and my dog is meowing! But seriously thanks for all the advise im back on my dosage and will get tests including vitamins and will post back 👍

Valeriu profile image
Valeriu in reply to Charlie-Farley

I didn't say to stop...I also said 'If'....I myself have lowered my dose although I need a higher dose then 45mg but got tired & fed up cutting a tiny 30mg Erfa into 2 for the afternoon dose....At one point I've gone down to 15mg but then changed my mind and went on Thyrovan NZ ( 25mg) for a while and now back to 30 mg Erfa omly in morning...:)

Gary1310 profile image
Gary1310

I had half of my Thyroid removed. Was put on Synthroid…became hypothyroid, then hyperthyroid. My GP took me off all medication and I was fine….seems my half thyroid took over even though it has several small noduals. I have not taken thyroid med for many years.

Charlie-Farley profile image
Charlie-Farley in reply to Gary1310

Hi Gary

The half a thyroid will compensate- which makes up for the half a thyroid they took out. Keep an eye on yourself though cause things can change - have a friend in a similar situation and unfortunately has had a couple crashes - currently her bit of thyroid is working, but it is fingers crossed 🤞😬

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