If you wanted to wean yourself off thyroxine... - Thyroid UK

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If you wanted to wean yourself off thyroxine...

boxesandplanes profile image
65 Replies

How would you go about it?

I've been on 75mcg for 5 years. I have felt awful side effects the entire time. I've recently been under a lot of stress and forgotten most of my doses for around 4 weeks and only taken it sporadically.

I'm starting to notice the side effects are lessening and I'm feeling a lot better.

I don't think I should have ever been on thyroxine in the first place. It was only necessary because I was hyperthyroid and given carbimazole which sent me hypo. I've always wondered whether my thyroid would sort itself out without thyroxine if I came off it. Now it's happened by chance and I've run out of thyroxine anyway, I'd like to keep it going so wondering if anyone else has weaned off it please?

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Lalatoot profile image
Lalatoot

Have you any blood results so we can see what we think. Please be careful. Initially we can feel great and then as the thyroxine which has been stored in the body is used and if you are not producing enough, levels cam plummet quite quickly making you very ill.

boxesandplanes profile image
boxesandplanes in reply to Lalatoot

Have replied below

If you were still hypo after you stopped taking carbi, you probably had Hashis (not Graves or a real overactive thyroid) to start with. Do you have up to date bloods TSH, FT4 and FT3 so people can advise? If you are actually hypo and you stop levo, your thyroid will go back to being underactive, as it was before you started levo. If you have hashis, your thyroid will gradually be destroyed, so you'll become more and more hypo, which increases your risk for heart failure and dementia.

boxesandplanes profile image
boxesandplanes in reply to Angel_of_the_North

Have replied below

greygoose profile image
greygoose

healthunlocked.com/thyroidu...

Just had a look at one of your past posts. I apologise for not having replied before, but you didn't click on the blue 'reply' button under my response, so I didn't know you'd replied.

What you have been experiencing were not side-effects of levo, they were hypo symptoms. You weren't taking enough levo, you were pretty under-medicated, so not surprising you had hypo symptoms.

However, there is this odd phenomenon that if you stop your levo for whatever reason, you will start to feel really, really well. All your symptoms will disappear, and you will believe that you never needed it in the first place. But, this euphoria doesn't last long. Little by little, the symptoms will come creeping back as your Frees drop in range, and your TSH rises.

If I were you, I would abandon all hopes of weaning yourself off levo, and get to your doctor's quickly for a prescription. Then, when you've been on 75 mcg for six weeks, start pressing for an increase in dose, and proper testing. :)

Oh, and I do know what I'm talking about with this, because I've done it myself.

McPammy profile image
McPammy in reply to greygoose

Yes I agree. I did this last year and stopped Levothyroxine as I thought it was making me worse. I felt great for about 10 days then bam I hit a wall. However, I did have a hard time restarting as I also had adrenal problems and conversion issue.

I would agree that these symptoms were probably being under medicated.

in reply to greygoose

"However, there is this odd phenomenon that if you stop your levo for whatever reason, you will start to feel really, really well. All your symptoms will disappear, and you will believe that you never needed it in the first place. But, this euphoria doesn't last long. Little by little, the symptoms will come creeping back as your Frees drop in range, and your TSH rises"

That's interesting, never knew that. Thanks GG.

I wonder why. Is it because your body recognises the sudden reduction in external supply and goes all out to compensate? But after a while you can't keep up any more. Like someone running for a bus, then collapsing with exhaustion as the bus pulls away.

After all, it is apparently common when first starting thyroxine, to feel no better at first, or even feel worse, because natural production drops in response to the extra.

greygoose profile image
greygoose in reply to

Nobody appears to know why. But, then again, I doubt there's been any research into it.

in reply to greygoose

Pity, would love to know why.

greygoose profile image
greygoose in reply to

Me too. :)

LAHs profile image
LAHs in reply to

How about this. You have a certain level of T4 in your body and you don't feel well. Then you stop your Levo (or whatever external T4 you are on), your T4 storage will begin to decline over the next 7 days and you will pass through a point which will be your critical level, and you will feel great. Beyond that point you will not have a sufficient level of storage T4 and so you will begin to feel ill, until it has all gone and then you will begin to shut down. Now the cut off may be prolonged by your adrenals kicking in to compensate your dropping level of T4 - but that will not last very long and the adrenals will then stop "doing their thing". This might explain the observed feelings of increasing then declining well being. And I suppose you could say that the time taken to get to your critical point (i.e. where you feel great) is proportional to the degree of over medication you had to begin with, but don't forget the interfering factor of the adrenals,

in reply to LAHs

Hmm, I'd forgotten the adrenals compensating.

But what if you are still undermedicated and have never actually been over medicated?? Or have a "Hyper swing"?

There seem so many variables...

LAHs profile image
LAHs in reply to

Well, we would have to rule out hyper swings because that would be a unpredictable event and therefore unsolvable. I think we could get an algorithm out of it by using T4 level and it's decline, adrenal effect and its profile (probably rises then falls), and the efficiency of T4 to T3 conversion (which will vary according to available T4). there will be other influences, but probably have very small influence.

It would be hard to do this experiment however since you would have to cut medication to patients who are well medicated and some who feel ill on their medication - unethical in either case I guess. Maybe "they" have statistical models of the endocrine system - but they would have to be pretty accurate to get a good comprehensive equation out of it.

Really interesting though isn't it. I wish most doctors were this interested. Problem is it takes careful and numerous measurements and most docs just can't do this in the patient load they have. It also takes a certain amount of patient driving - which is a lot to ask. And getting the two together is probably about 0.1%!

boxesandplanes profile image
boxesandplanes in reply to greygoose

Have replied below

Lalatoot profile image
Lalatoot in reply to greygoose

It makes me feel so much better to know that others have tried this too. I didn’t quite get down to a dose of 0mcg levo but I did end up very ill. Still it did highlight my conversion problem once I was back at 100 mcg.

greygoose profile image
greygoose in reply to Lalatoot

I think possibly, quite a lot of people probably try it, but just don't talk about it because it seems so stupid afterwards. :)

SlowDragon profile image
SlowDragonAdministrator

Looking at your previous post your vitamin levels were absolutely dire

Ferritin was extremely under range. Did you get iron infusion?

B12 very low and folate too

Were you tested for Pernicious Anaemia and started on B12 injections?

Add you taking any vitamin B complex?

Essential to test vitamin D too

Ask GP or test via NHS postal kit £29

vitamindtest.org.uk

All four vitamins need to be optimal for Levothyroxine

Low vitamins are extremely common hypothyroid symptom

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

What were your most recent Thyroid blood test results

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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

nhs.uk/medicines/levothyrox...

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

Do you always get same brand of Levothyroxine?

Many people find different brands are not interchangeable

boxesandplanes profile image
boxesandplanes in reply to SlowDragon

Have replied below

boxesandplanes profile image
boxesandplanes

So many posts to reply to, thank you everyone.

I will try to reply to all here.

I don't have any recent results, but TSH is generally around 2-3.

I still haven't taken any thyroxine, not because I'm stubborn but I'm just really stressed.

Also, I forgot to mention how my thyroid has been gradually becoming swollen, my neck looked fat with rolls and I started having trouble swallowing (clicking and slow movement of food/drink like it was getting stuck), I also get a lot of pain in my thyroid area. This was all on thyroxine. I have an US scan arranged this week because of this, however, the last week I've noticed the clicking is disappearing and my neck looks a lot less swollen.

So I'm scared to start taking it again as I am seeing improvement in things like that, not just feeling better. My heart rate has come right back down (was always over 100 on thyroxine).

No I didn't get an iron infusion, nhs refused and I just haven't got around to private.

I do take b vitamins and vit d when I remember, but obviously I've forgotten my thyroxine for a month so that's not saying much!

No extra testing/b12 injections as gp said all in range

greygoose profile image
greygoose in reply to boxesandplanes

I've been on 75mcg for 5 years. I have felt awful side effects the entire time. I've recently been under a lot of stress and forgotten most of my doses for around 4 weeks and only taken it sporadically.

It's very difficult to say much without seeing any labs, but, given the small dose you're on, and the fact that you only take it sporadically, I would think your symptoms are more likely to be due to under-medication than the levo itself. To be honest, you're never really given it a chance to make you well, have you.

t was only necessary because I was hyperthyroid and given carbimazole which sent me hypo.

Are you absolutely certain you had Grave's? Or did you have Hashi's? Were any antibodies ever tested? If not, you need them tested as soon as possible. In fact, I think it would be a good idea, if you can, to get full private testing - the NHS will never do all the necessary tests. You need:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin.

That would give you a much clearer idea of your thyroid status. At the moment, you're putting yourself at risk without really knowing what you're doing. It's really not advisable to continue like that. It could have serious consequences in the future. :)

boxesandplanes profile image
boxesandplanes in reply to greygoose

Haven't made myself very clear I think. I've been on 75mg taken properly every day for 5 years. The side effects have been awful with that. The labs have been normal.

It all started with detecting a TSH of 0.004 foloowing second pregnancy and was put on carbimazole for 1 month. Then TSH was 90 so was put on thyroxine.

I was then told it was hashimoto's due to labs and would need to stay on thyroxine for life.

However, I have never felt better, and have been taking it properly, I've felt the worst I've ever felt in my life for the last 5 years and had really bad symptoms.

I know I am sensitive to hormones as I react badly to even topical corticosteroids as well.

But I cannot believe the change in my thyroid area since taking thyroxine sporadically for the last month. I have an ultrasound tomorrow and I fully expected it to show massively swollen thyroid a month ago, but now I've stopped the thyroxine, the clicking is disappearing rapidly (not all gone though) and swallowing is easier. So, now I don't expect the scan to show any issues.

I will get those bloods done, but is it actually possible, albeit rare it would seem, that I have been making myself I'll by taking thyroxine?

SlowDragon profile image
SlowDragonAdministrator in reply to boxesandplanes

Vast majority of people on levothyroxine need at least 100mcg

TSH over 1 is likely too high

Low vitamin levels common when under medicated

So it’s more likely you never felt well on levothyroxine as not on high enough dose

Getting FULL thyroid and vitamin testing highly recommend

High cholesterol is strongly linked to being hypothyroid and under treated

greygoose profile image
greygoose in reply to boxesandplanes

There could be several reasons why you don't feel well on levo.

1. You're not absorbing it properly - possibly due to low stomach acid or taking it incorrectly.

2. You are under-medicated. Most likely scenario considering you had a TSH of 90!

3. You have a conversion problem. Lots of Hashi's people do.

4. You have an absorption problem at the cellular level.

5. The fillers in the tablet don't agree with you (have you tried changing the brand?).

6. You cannot tolerate T4 (I think that's pretty rare, but it does happen. It happens to be my case. But that doesn't mean that I don't need thyroid hormone replacement, I now take 75 mcg T3 only.)

Having a doctor tell you your labs are 'normal', doesn't actually mean they are, for several reasons:

1. The doctor isn't doing the right tests.

2. The doctor doesn't know how to interpret labs results (this happens more than one would like to think!). S/he thinks that just being in-range is fine and doesn't understand it's where in the range the result falls that counts.

3. The doctor doesn't understand how it all works (this is true for 99% of doctors because they don't spend enough time on the thyroid in med school - and I mean they spend about half an hour!).

4. The doctor does all the right tests, but only looks at the TSH.

Now, to ascertain which of these points concerns you, you would need to get hold of all your labs and learn to interpret them. We can help you there.

So, you have Hashi's - which was pretty obvious, really. Hashi's does continual damage to your thyroid, it repeatedly attacks the thyroid and the cells die off. The thyroid cannot regenerate so there is no chance that it can ever work properly again. Therefore you are going to be reliant on thyroid hormone replacement for the rest of your life. You could come off levo, of course you could, but you would have to have something else to take in its place.

The options are T3 (the active hormone) or NDT - Natural Dessicated Thyroid, made from pig thyroid - but not really as 'natural' as all that. But, your chances of getting them on the NHS are pretty slim. You would have to buy them yourself. If you buy them yourself, and self-treat, you would have to negociate with your GP to see if she would be willing to monitor you. If not, you'd have to get private tests done.

Taking levo - even if it doesn't agree with you - is not likely to have damaged anything. The symptoms are due to lack of thyroid hormone, not taking a thyroid hormone. And that's pretty important to understand. Levo, T3, NDT, are not drugs. They are thyroid hormones, essential to life. But, as I said before, it could be that the fillers in the tablet disagreed with you, causing side-effects, but even they wouldn't do you any damage, even if they made you feel bad. :)

boxesandplanes profile image
boxesandplanes in reply to greygoose

Thank you. Apologies for the late reply.

I am still off levothyroxine. Just had my bloods done.

I cannot just go back on it when I feel so much better mentally, and I was really struggling before.

My heart rate has also come right down. Previously, on levothyroxine it was always above 100, now it's down around 70.

greygoose profile image
greygoose in reply to boxesandplanes

That's too low.

You may feel better at the moment, but it won't last. You've got to take something, as I explained above. So, you have the choice: go back on levo; buy your own NDT/T3; gradually deteriorate until you slip into a myxoedema coma and die. That is if you don't die of a heart attack or kidney failure or something, caused by lack of thyroid hormone before the coma sets in. That sounds harsh, and it won't happen immediately, but it will eventually because you cannot live without thyroid hormone.

You are playing Russian Roulette with your life because you haven't yet understood how serious your disease is. I would really suggest you read up on it a bit.

boxesandplanes profile image
boxesandplanes in reply to greygoose

Well that told me!

So...I don't want to die/have heart attack/kidney failure. But when I was on levothyroxine I had suicidal thoughts quite a bit and was constantly anxious, high heart rate, never felt myself and basically often wished I would die in my sleep

I don't seem to react well to synthetic hormones. I have the same issues with using steroids even in tiny doses.

I have no idea why, but when it causes such serious side effects, which I have tried for 5 years to treat with other stuff, and they suddenly start to improve massively. I can't just ignore that.

My TSH has come back still in at 3.080 after about 6 weeks off levo - Range (0.35-5) having previously come back at 2.400 (when taking levo ) with the same range in April. So it hasn't changed very much. I know it's not great but I've had it under 1 plenty of times as well and still felt awful.

On the blood form, it said I was in thyroid replacement, do you know how that will have affected the results or why they say that?

I honestly haven't seen any positive benefits of taking it in 5 years. But I have seen massive negative side effects.

I understand it's an essential hormone, I do really understand that. I know I need it, and I want to be able to take it, I just don't know how to force myself to take it when I now know that it is causing my whole life to have turned upside down.

Also, I had been reffered for a scam om my thyroid because I was having trouble swallowing and clicking in my throat. That has not disappeared completely, but it's got a lot better. Haven't had the scan yet though.

I don't know if it's side effects, and whether NDT would be better or whether I'm not converting it and need t3 or whether I never should have been on it in the first place.

boxesandplanes profile image
boxesandplanes in reply to boxesandplanes

Also, my ferritin went up from 6 to 7! Having done nothing in terms of taking iron....before thatbit was always going down

greygoose profile image
greygoose in reply to boxesandplanes

I honestly wonder how you're still standing with that ferritin. And, that could explain why you've had so much trouble with levo. All your nutrients need to be optimal for your body to be able to cope with exogenous hormone like levo. Going up from 6 to 7 is really not much of an improvement, is it? :)

boxesandplanes profile image
boxesandplanes in reply to greygoose

No not much, but I was expecting it to have decreased.

greygoose profile image
greygoose in reply to boxesandplanes

It might just as well have, for all the difference that makes.

boxesandplanes profile image
boxesandplanes in reply to greygoose

Well nhs won't give an infusion because haemoglobin is normal. I cant tolerate tablets and they don't actually work for me. I have tried to get an infusion privately but didn't hear back and gave up

greygoose profile image
greygoose in reply to boxesandplanes

Eat liver once a week. Or liver pâté, or black pudding. Things that are rich in iron. And, eat a source of vit C with it, like potatoes, to help absorption.

greygoose profile image
greygoose in reply to boxesandplanes

On the blood form, it said I was in thyroid replacement, do you know how that will have affected the results or why they say that?

Knowing whether you are taking thyroid hormone changes the way the results are interpreted. At least, by those that know anything about it, but that's not most doctors.

I honestly haven't seen any positive benefits of taking it in 5 years. But I have seen massive negative side effects.

I did explain the various possible reasons for not feeling any better, above. Did you see that? Did it ring any bells?

And, how do you know they were side-effects of the medication you were feeling, and not symptoms of the disease? From what you've described, I would say they were symptoms of the disease because you weren't taking enough hormone.

I don't know if it's side effects, and whether NDT would be better or whether I'm not converting it and need t3 or whether I never should have been on it in the first place.

I can't help you there because I haven't seen any labs. Why don't you try NDT and see if it's any better for you? But, I very much doubt you were misdiagnosed. That is very, very rare because doctors so hate diagnosing anybody with hypothyroidism. They will lie through their teeth and invent new diseases rather than diagnose hypo. So, I'm pretty sure you should be on it. But, like I say, I haven't see any labs.

boxesandplanes profile image
boxesandplanes in reply to greygoose

I don't know how to add labs, there's no option to add files/photos.

I will try to find some I can copy over, but the last time I had full testing done was years ago, since then it's only been TSH.

I've just ordered a medichecks full thyroid test. The ultra one.

Will it still be useful to do it while off thyroxine?

I thought I would try ndt. Not sure how to do that though? I was on 75mcg levothyroxine.

greygoose profile image
greygoose in reply to boxesandplanes

Well, there is an option to add photos on my PC - don't know if you're doing it on a phone. But, if all they're testing is TSH, not much point in adding a photo, just tell us what your last TSH was.

I don't know what your results will be like off levo. Be interesting to see.

75 mcg levo is approximately equal to one grain NDT. Impossible to say exactly because there are so many variables, but it would be a good idea to start on one grain and adjust from there. It's not complicated. But, with NDT, only adjust by 1/4 grain every two weeks, no more.

boxesandplanes profile image
boxesandplanes in reply to greygoose

Yes the only thing that rung bells was being intolerant to levothyroxine.

If all my symptoms were down to being hypo then they wouldn't disappear when off levo?

greygoose profile image
greygoose in reply to boxesandplanes

Well, they would, actually. For a while, anyway. That's the anomaly of thyroid hormone replacement.

boxesandplanes profile image
boxesandplanes in reply to greygoose

Ok, so here are some old results to now. As I said, the different tsh has never really had me feeling any different. Usually the lower tsh is because I've been pregnant (and subsequently miscarried)

March 2016

Thyroid function test

Serum TSH level 12.410 mu/L 0.27 - 4.2 mu/L

Serum free T4 level 10.600 pmol/L 12 - 22 pmol/L

25-Jun-2016

Serum free T3 level 4.200 pmol/L 3.9 - 6.7 pmol/L

Serum free T4 level 17.100 pmol/L 12 - 22 pmol/L

Serum TSH level 1.260 mu/L 0.27 - 4.2 mu/L

SEpt 2016

Thyroid function test

Serum free T4 level 19.600 pmol/L 12 - 22 pmol/L

Serum free T3 level 4.600 pmol/L 3.9 - 6.7 pmol/L

Serum TSH level 2.080 mu/L 0.27 - 4.2 mu/L

31-Oct-2016

Thyroid function test

Serum free T3 level 4.300 pmol/L 3.9 - 6.7 pmol/L

Serum free T4 level 20.800 pmol/L 12 - 22 pmol/L

Serum TSH level 0.730 mu/L 0.27 - 4.2 mu/L

July 2017

Serum TSH level 2.220 mu/L 0.27 - 4.2 mu/L

dec 2017

Serum TSH level 1.390 mu/L 0.27 - 4.2 mu/L

april 2018

Serum TSH level 1.100 mu/L 0.27 - 4.2 mu/L

july 2018

Serum TSH level 1.140 mu/L 0.27 - 4.2 mu/L

april 2019

Serum TSH level 2.400 mu/L 0.35 - 5 mu/L

Oct 2019 (after being off levo around 6 weeks)

Serum TSH level 3.080 mu/L 0.35 - 5 mu/L

greygoose profile image
greygoose in reply to boxesandplanes

TSH doesn't make you feel anything. That's not it's job. It's low T3 that makes you feel bad, and yours has always been too low, and that's why you feel bad. You're a poor converter. So, rather than coming of levo completely, what you need is some T3 added to your levo. That's as clear as daylight looking at those labs.

boxesandplanes profile image
boxesandplanes in reply to greygoose

Ok, thank you.

How do I get t3 ?

I still think that I am reacting to the levo though. I'm not disputing that I need it (although I do wonder why I still have TSH in range after 6 weeks off it). But I am convinced I experience severe side effects.

greygoose profile image
greygoose in reply to boxesandplanes

You could ask your endo if he could prescribe it. And, if not, buy it yourself on-line. You'd have to write a new question asking people to PM your a link to their trusted sources. We're not allowed to discuss sources in the open forum.

boxesandplanes profile image
boxesandplanes in reply to greygoose

Don't have an endocrinologist. Will ask others, but again, I'm so worried about it sending me crazy again.

I just don't react well to hormones

boxesandplanes profile image
boxesandplanes in reply to greygoose

So, how do you know that t3 is too low if it's in range? The first thing my gp will say is that I don't need to worry because everything is in range.

greygoose profile image
greygoose in reply to boxesandplanes

I just know that it should be higher in the range. The ranges are too wide. If my FT3 were that low, I'd be bed-bound. Most hypos need FT4/3 higher than euthyroid people. But, the ranges are based on euthyroid, healthy people. It's unrealistic to expect us to react the same way. And, if doctors knew anything about it, they'd realise that.

You can't say you don't react well to hormones, because your body is full of them. Without them, you'd be dead. Why do you think taking T3 will drive you crazy?

boxesandplanes profile image
boxesandplanes in reply to greygoose

Ok.

Yes, I'm full of hormones and everytime they surge, I react badly. I suspect I have PMDD, I turn into a different person around period and then again at ovulation.

When I use synthetic hormones I also react badly. I can't even use a small dose of hydrocortisone, without sending my skin into crazy inflammation mode and mood dropping through the floor.

That's why I worry about taking t3.

greygoose profile image
greygoose in reply to boxesandplanes

Start with a very small dose, and give yourself plenty of time to get used to it before trying to increase. :)

boxesandplanes profile image
boxesandplanes in reply to greygoose

I've posted my most recent results below, would appreciate any advice on how they look please.

DippyDame profile image
DippyDame in reply to boxesandplanes

I totally agree with greygoose,

It's clear that you are trying to improve your health but it is also clear that you have not been well advised.

It's a great deal to take in so don't try to absorb it all in one step. You need to move forward in slow steps, learn about your condition, be patient because there isn't a quick fix - think headache/ paracetamol - and trust that if you listen to advice from members that you will eventually feel better.

Not easy, so wear your "I'm determined" hat!!

You say you are constantly anxious and feel suicidal....these are symptoms of hypothyroidism!

You feel ill because you are undermedicated.....less likely a reaction to thyroid hormone

You may also have a conversion problem, but we need labs to check this.

If that is the case then you may need T3.

I'm afraid without the lab results from the tests advised above it is impossible to easily identify your problem,

Don't mess about with your health, un/undermediated thyroid disease will lead to a long slow decline.

I'm not a medic but I have experienced the result of long term undermedication and it has taken me around 2 years to feel human again after reaching a point where I could barely function.

We understand how you feel....most of us have been there

Medics are wedded to TSH as a diagnostic tool....not helpful. You must have FT4 and most importantly FT3. See advice above.

It was advice from TUK that saved me but it took 50 years (I'm now 74!)to find that advice.. my medics had no idea what was wrong with me!

You have been given good advice,....my advice is to follow it

Good luck...we are all in this thyroid debacle together!

DD

boxesandplanes profile image
boxesandplanes in reply to DippyDame

Thank you

You say you are constantly anxious and feel suicidal....these are symptoms of hypothyroidism!

It has dissapeared when I;ve stopped taking thyroxine, it just makes no sense that it's down to hypo

DippyDame profile image
DippyDame in reply to boxesandplanes

Did these symptoms stop immediately?

How long have you been without levo?

Have you tried another brand ?

You have already been advised about the need for optimal nutrients

That should improve conversion of T4 to T3 though I suspect you may need to add T3

I can only reiterate what greygoose has said,

"You may feel better at the moment, but it won't last. You've got to take something, as I explained above. So, you have the choice: go back on levo; buy your own NDT/T3; gradually deteriorate until you slip into a myxoedema coma and die. That is if you don't die of a heart attack or kidney failure or something, caused by lack of thyroid hormone before the coma sets in. That sounds harsh, and it won't happen immediately, but it will eventually because you cannot live without thyroid hormone."

It is important that your cells - trillions of them - have a constant and adequate supply of T3 (either converted or exogenous) without this you will feel ill. Your FT3 is far too low.

You asked, "How would you go about it', this is my answer!

What you do with the advice on offer is clearly your decision

Best of luck.

boxesandplanes profile image
boxesandplanes in reply to DippyDame

Ok thanks.

I don't want to be argumentative. I just finally feel clear headed and can actually feel joy sometimes again. I am calm and feel like myself after so long of the extreme opposite.

It's unbelievably terrifying to think of putting myself back into my previous state of mind, now that I have got back closer to how I should feel.

However, I do worry I need thyroxine because physically I don't feel well.

DippyDame profile image
DippyDame in reply to boxesandplanes

Don't worry I don't think you're being argumentative, just explaining how you feel!

Thyroid disease can play havoc with both mental and physical health.

Experienced members have offered links and good advice, what you do with that is entirely up to you. When rejecting or accepting that advice bear in mind your words, "However, I do worry I need thyroxine because physically I don't feel well."

I hope you find the way forward that you are looking for.

Best...

DD

SlowDragon profile image
SlowDragonAdministrator

How long have you now been off Levothyroxine?

Before considering restarting Levothyroxine and/or adding in tiny dose of T3 ....essential to get FULL Thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Personally I think your extremely low vitamin levels are likely due to always being under treated. 75mcg is only one step up from starter dose. Most patients need TSH well under one and FT4 towards top of range and FT3 at least half way through range

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).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Fot T3 to work well you really need all four vitamins optimal and your ferritin was terrible. Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

Links about iron and ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

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

As you have Hashimoto's are you on strictly gluten free diet? Many of us find it absolutely essential

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

boxesandplanes profile image
boxesandplanes in reply to SlowDragon

I've been off about 7 weeks now. Dont know exactly, but around that sort of time.

So you think I shouldn't just restart levo?

I almost did, because I've been ill with a cold, cough and ears are starting to get inflamed (always happened prior to having levo) and I just generally feel ill/run down which won't go away......apart from mentally.

And then I looked in the mirror, and remembered how I'd lost weight since I stopped it, lost a big fat ring around my neck where my thyroid is that I had developed since being on it, and the clicking in my throat which has gone down loads since stopping.

I'm lost now.

I know if I restart and then go and tell gp what I've done, she will ignore the fact that I noticed all these things disappear while I was off it.

Thanks for the long message, I have put in a claim on medical insurance for iron infusion today, not sure if I'll get it, but it's a start

boxesandplanes profile image
boxesandplanes in reply to boxesandplanes

In regards to vitamins, I haven't had them tested very recently, but when I did, all were in range but looking over b12 has gone down . Still in range, but I'm supplementing with decent b complex anyway.

In 2015 B12 was - 658 (197-778)

Has gradually declined to now in April 2019 was 255 (130-800)

Folate in april was 6.9 (4-20)

Vit d in april was 69 (30-300)

Anti tissue transglutnase in 2015 was 8 (0-14)

boxesandplanes profile image
boxesandplanes in reply to SlowDragon

I've posted my results below, would appreciate any advice please!

Katoir profile image
Katoir

Feel free to PM me as I weaned off NDT a few years ago after going on it rather hastily .

I did not feel unwell (maybe a bit ragged 1-2 days but that could easily have been normal tiredness ) My body did not shut down and my thyroid is fully functioning and I am fully fit .

I did consult with an endo privately as I was worried and I did wean in stages . There can be life after and was the best thing I ever did .

X

boxesandplanes profile image
boxesandplanes in reply to Katoir

Thank you, have just pm'd you.

boxesandplanes profile image
boxesandplanes

Posting my new results in here as well as on new thread for any tips on how they look compared to the previous ones:

CRP 0.86 (<5)

Ferritin 17.5 (13-150)

Folate 4.62 (3.89-19.45)

B12 69.3 (37.5-187.5)

TSH 3.82 (0.27-4.2)

Free T3 5.46 (3.1-6.8)

Free thyroxine 15.9 (12-22)

Thyroglobulin antibodies 29.4 (<115)

Thyroid peroxidase antibodies 90.7 (<34)

It seems after 8 weeks off levo, ferritin has increased, TSH increased, but also T3.

greygoose profile image
greygoose in reply to boxesandplanes

Well, I've looked and I can't find the previous ones. But, these are pretty awful.

Your ferritin is so low you should be having a full iron panel done.

Folate should be at least mid-range.

B12 at least over 70, but preferably higher.

Your TSH is saying you're now hypo, being over 3.

Your FT3 is over mid-range, but that's your TSH driving conversion to keep the level up and keep you alive.

FT4 is well below mid-range.

And your antibodies are saying you have Hashi's, and things can only get worse long-term.

I don't know what you were hoping to prove with these labs, but they're just saying you need to go back on some sort of thyroid hormone replacement and improve your nutrients. :)

boxesandplanes profile image
boxesandplanes in reply to greygoose

Thank you

Previously ferritin was 6, so after only decreasing for years with no explanation, it has jumped up with a month or so to 17. I know it's still very low, but it was quite a shock to see the positive change purely with removing levothyroxine.

You said "Your FT3 is over mid-range, but that's your TSH driving conversion to keep the level up and keep you alive"

But to me, that would say that my body is properly able to convert to T3 and means I shouldn't consider taking T3?

I'm really not trying to prove anything at all.

I just feel mentally a million times better.

I've read before on here that the way you feel needs to be taken more notice of than the bloods.

So I think as long as I'm not massively hypo then I will focus heavily on increasing vitamins and then re test.

greygoose profile image
greygoose in reply to boxesandplanes

I know it's still very low, but it was quite a shock to see the positive change purely with removing levothyroxine.

Removing levo had nothing to do with it. Taking levo was not what caused low ferritin, it was being hypo and having low stomach acid.

But to me, that would say that my body is properly able to convert to T3 and means I shouldn't consider taking T3?

Might mean that to you. It wouldn't mean that to anyone else. If you start taking levo (T4) to bring your FT4 up, your TSH will drop, and so will the conversion rate.

I've read before on here that the way you feel needs to be taken more notice of than the bloods.

When taking levo, yes. Not when you stopped taking levo seven weeks ago. It's a well-known phenomena that if you stop taking your levo - or any other form of thyroid hormone replacement - you will at first feel absolutely wonderful. No-one knows why, that's just the way it is. But, it won't last. Sooner or later, the hypo symptoms will come creeping back. Surely you've read that on here, too, no?

So I think as long as I'm not massively hypo then I will focus heavily on increasing vitamins and then re test.

Good idea. :)

SlowDragon profile image
SlowDragonAdministrator in reply to boxesandplanes

You could concentrate on improving low vitamin levels

You need vitamin D tested

vitamindtest.org.uk

As you have Hashimoto's....Are you on strictly gluten free diet?

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

Then retest thyroid levels in a further 6-8 weeks

boxesandplanes profile image
boxesandplanes in reply to SlowDragon

Thank you

Yes I think I am going to concentrate on increasing vitamin levels.

I have had celiac blood test before and I think it was close to threshold but not enough for a diagnosis.

I am still eating gluten, but dont have a high gluten diet at all, I don't think. What would constitute a high gluten diet?

Do you need to be eating a lot of gluten for the test to be accurate?

Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to boxesandplanes

Yes. You need to eat gluten at every meal for minimum of 6 weeks prior to Coeliac blood test

Vast majority of Hashimoto's patients are not coeliac, but are gluten intolerant. Currently no easy test available

The only way to know if that includes you is to try absolutely strictly gluten free diet for 3-6 months

If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

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