Hi there. I have Hashimoto's and my aim is to eventually come off the Levo by somehow treating the autoimmunity. I'm on 100mcg atm but i hate taking medication and I don't want to be on it for life. I've been on it for 4 years now so I worry I'll never come off it. Started at 25mcg and increased dose rapidly within the last year and a half. My TPO antibodies have been rising despite trying a completely gluten free diet for 6 months. Does anyone think there's a chance of reversing the autoimmunity?
I won't try to decrease my dose yet as I'm trying to get pregnant and will stay on medication throughout pregnancy (if it happens). I had an early miscarriage 2 months ago, which I worry was something to do with low thyroid. My ranges are ok atm, but I need to be tested again within this next week. I have never been referred to an endo despite asking many times as GP thinks my thyroid is under control. They only ever test my TSH and free T4. I did have to ask for the TPO the couple of times that I've had it tested, confirming Hashi's.
I'm sorry to have to tell you this, but there is next to no chance of you ever coming off levo. You have Hashi's, which is slowly destroying your thyroid. Already, so much damage has been done that despite being on 100 mcg levo, your TSH is still much too high - both for good health and for conception. Even if a cure for autoimmune diseases were suddenly discovered and made available - which is unlikely to happen in the forseeable future - your thyroid would not be able to regenerate sufficiently to be able to produce enough thyroid hormone to keep you well. You will always be hypo so will always need thyroid hormone replacement of some kind, be it levo, T3 or NDT.
Don't think of levo as 'medication'. It's not a drug. It is the thyroid hormone, T4, replacing the hormone your thyroid should be making, but no-longer can.
I know there are people on internet, on forums, that claim to have 'cured' their Hashi's. But, I have never seen proof positive that they have done so. Hashi's, as I'm sure you know, swing between hypo and false 'hyper', and back again. Sometimes, inbetween the 'hyper' and hypo phases, you can have 'remission', a long period of euthyroidism. Which is when people think they have 'cured' their Hashi's by whatever means they're trying, and give up their thyroid hormone replacement. But, sooner or later, they will be forced to start it again. I've seen that so many times on forums.
Antibody levels are a complete red herring. The level does not indicate the state, or seriousness, of the disease. Even if you managed to get rid of them completely, you would still have Hashi's. The antibodies are not the disease. They are the Mrs Mops of the immune system. After an immune attack on the thyroid, the dying cells dump their stock of hormone into the blood - which is why levels of T4/T3 can suddenly shoot up with no change to the dose of levo. At the same time, traces of TPO and Tg, proteins necessary for the production of thyroid hormones, also leak into the blood. And, it is the TPO and Tg antibodies' job to come along, envelop these proteins and take them away for disposal, because they should not be there.
Therefore, antibody levels fluctuate all the time. They also decrease in number as the thyroid slowly dies and the number, and intensity, of the attacks, decreases. So, difficult to prove that anything such as gluten-free diets have any effect on them. So, once you know they're there, there's really no much point in retesting them.
Thanks for this. Hard to hear, but found it interesting hearing about the people who claim to have cured it. I was hoping to find that it was possible, but the false remission thing makes sense. It's sad to hear, but glad I can finally just accept that being on hormone replacement will be lifelong.
I did however conceive back in July, despite my TSH being through the roof (15!), so it must be possible, BUT as I said, I lost the pregnancy at 8 weeks and think this must have had something to do with it? It was very stressful as I kept phoning the GP saying I knew my dose was too low, I had all the symptoms of low thyroid (although I know they're very similar to pregnancy symptoms) but he would not refer me to an endo and I felt like I was going mad. They retested me and upped my dose, but by then it was too late really. The pregnancy had gone.
When I first started on the Levo I did worry about taking a synthetic thyroid hormone. I had an idea that taking it might almost tell the thyroid it doesn't need to do its job anymore, by a negative feedback loop. Does that make any sense? I don't fully understand the mechanism so that's why I'm so nervous about increasing the dose more and more. Honestly though, I'm very compliant, I take The Levo first thing on rising, don't eat for at least an hour, don't eat any calcium containing foods or caffeine for at least four hours, in my hope that it will keep on working. Before I was diagnosed or on any Levo I always had a general feeling of fatigue, depression, aching joints etc. and once I started on the Levo it was miraculous! I felt amazing for the first year. In the last year or two I've been increasing the dose and then retesting and my TSH just seems to keep on creeping up after a few months. Is there any reason for this?
I also read something about Levo causing calcium deficiency and a risk factor for osteoporosis after the menopause (not that I'm there yet!), do you know anything about this?
I did however conceive back in July, despite my TSH being through the roof (15!), so it must be possible, BUT as I said, I lost the pregnancy at 8 weeks and think this must have had something to do with it?
I don't think I've heard of anyone conceiving with a TSH of 15 before, but anything's possible, I suppose. Just not very likely.
But, yes, being that hypo would have had something to do with you losing the pregnancy at 8 weeks. In the early weeks, the baby depends entirely on your T4 to live because it hasn't developed its own thyroid yet. If you haven't got enough then both you and the baby are going to suffer. And, if your TSH was 15, then your FT4 would have been very low. Your GP was very, very negligent. I think that merits a formal complaint.
When I first started on the Levo I did worry about taking a synthetic thyroid hormone.
Synthetic doesn't always equal bad. The chemical composition is exactly the same as the hormone made by your thyroid. And, some people - me included - actually do better on synthetic than on 'natural' pig hormone.
I had an idea that taking it might almost tell the thyroid it doesn't need to do its job anymore, by a negative feedback loop.
Well, yes, that's exactly what happens. But your thyroid was obviously not capable of producing enough hormone itself, anyway. And, as you have Hashi's, it would just have got worse and worse, due to the immune system attacks on the thyroid, until the thyroid was completely destroyed. So, sounds harsh to say it, but your thyroid was no great lose, anyway! It was only a matter of time before you lost it completely due to the Hashi's. By starting the thyroid hormone when you did, you saved yourself a lot of suffering.
I don't fully understand the mechanism so that's why I'm so nervous about increasing the dose more and more.
You have to increase the dose. I imagine you started off on 50 mcg? That is far from a full replacement dose. But, with hormones - all hormones - you have to start low and increase slowly, so as not to shock the body and cause even more problem. The idea is that you stay on any given dose for six weeks and then retest. If your TSH is still too high, and your Frees too low, you increase by 25 mcg, and wait another six weeks to test again. It takes at least that long to feel the full impact of the increase.
But, there's nothing to fear from the increases. Your thyroid may have stopped working, but if - for whatever reason - you could no-longer take your dose of levo, your thyroid would go back to doing what it was doing before you started the levo - i.e. it would produce some hormone, but not enough, and your TSH would rise more and more to try and stimulate it into making more hormone. So, you would be back where you started, no more and no less.
TSH - Thyroid Stimulating Hormone - is a pituitary hormone. When the pituitary senses that there is not enough thyroid hormone in the blood, it increases its output of TSH to make the thyroid produce more. If the thyroid cannot comply, the pituitary makes more and more TSH, pushing the thyroid harder and harder. When you start takiing exogenous hormone, the pituitary senses it, and gradually reduces the TSH, which means that the thyroid works less and less until it gives up completely - it will not work without the TSH stimulating it.
The Levo first thing on rising, don't eat for at least an hour, don't eat any calcium containing foods or caffeine for at least four hours, in my hope that it will keep on working.
But it won't. And neither should it. The levo you're taking has no effect on the thyroid itself. But, does affect the pituitary and its production of TSH. If your thyroid continued to make thyroid hormone on top of the exogenous hormone you're taking, it would make you very ill.
In the last year or two I've been increasing the dose and then retesting and my TSH just seems to keep on creeping up after a few months. Is there any reason for this?
Yes. Because the pituitary is sensing that you're not on the right dose yet.
You were probably hypo for quite some time before your symptoms drove you to see your GP. During that time, the adrenals were making up for the lack of thyroid hormone by producing more cortisol, but even so, the body was adjusting to the lowering levels of thyroid hormone by shutting down the thyroid hormone receptors in parts of the body it deemed less essential, in order to have more for the really essential bits like the heart and the brain - which need the most hormone, anyway.
So, when you start taking thyroid hormone replacement, the body slowly gets used to having more hormone and begins to relax a bit, and slowly reopening the closed off receptors. But, reopening those receptors mean that you need more and more hormone. The pituitary senses this and raises the TSH. Eventually, hopefully, you will reach a point where all the receptors are open, and you're getting enough thyroid hormone to satisfy them all, the pituitary will then be satisfied and stop raising the TSH.
I also read something about Levo causing calcium deficiency and a risk factor for osteoporosis after the menopause (not that I'm there yet!), do you know anything about this?
Yes, well, you can read all sorts of fairy tales on the internet, often written by doctors who are terrified of hormones, and like to keep their patients under-medicated 'just in case'. (I had one like that, and he actually said 'just in case' in case I 'flipped over' to hyper!!! lol He has no idea about the thyroid or how to treat it.) I have never heard of levo causing calcium deficiency - normally they say that about T3. But, if that were the case, the whole of humanity would be falling apart! Levo is just the thyroid hormone T4, which a healthy body makes naturally from the time we are born. Of course, you don't want to take too much of it - the consequences of that are not yet fully understood, but osteoporosis is a possibility. But, as I always say, there's a huge difference between too much and none at all! Millions of people who don't take levo, or any other thyroid hormone replacement, get osteoporosis. It just happens with age and poor nutrition - what's more, it's far more likely to happen if you're hypo as well. I'm 76 - well past menopause - and have been taking THR of one sort or another, for over 20 years, now. And, as far as I know, have no problems with my bones - touch wood and wistle! And, if I did find out I had osteoporosis, I'd increase my vit D, magnesium, and other nutrients, but not calcium.
So, keep a healthy diet, optimise your thyroid hormones, and I doubt you'll have any higher risk than anyone else of getting osteoporosis, before or after menopause.
Hi hashihol ,i totally agree with greygoose' s reply . I can't find a link to the pregnancy guidelines at the moment , but as greygoose said , your TSH being over 2 is higher than is recommended for successful conception / avoiding miscarriage.
of the top of my head ...I think TSH 'below 2 ' is recommended if trying to conceive, and sometimes a small increase in dose is needed as soon as conception confirmed ,
Hopefully someone can provide a link to specific guidelines for TSH target levels in pregnancy.
Did you know there are separate recommendations for TSH levels in pregnancy ?
This is interesting about the separate TSH recommendations in pregnancy. I've tried again to be referred to an endo but the GP said I can only be referred once I'm pregnant again!! I'm tearing my hair out!
"I did however conceive back in July, despite my TSH being through the roof (15!), so it must be possible, BUT as I said, I lost the pregnancy at 8 weeks and think this must have had something to do with it? "
Sadly, yes ..... it's very likely that it will have had a lot to do with it.
Without adequate thyroid hormone crossing the placenta from the mother in the first few weeks ....... (before the baby develops it's own thyroid gland) ...... developmental problem can/will occur in fetus.
personally i've always looked at it like 'the body knows what its doing' in this respect, and am not surprised that higher TSH is related to higher miscarriage rates.
This is well known and acknowledged , and is the very reason the separate pregnancy guidelines exist ... because inadequate thyroid hormone risks developmental problems and increased rates of miscarriage .
The potential problem with GP's 'waiting until confirmed pregnant' is obviously that it is in the first few weeks (? i think ) where low thyroid hormone levels in the mother are most critical for the proper development of the fetus... due to the fetus not having any ability to produce it's own thyroid hormone at that point .
In reality by the time we've.... missed a period ....had a pregnancy test .... seen the doctor ... had the dose of levothyroxine raised .... got the prescription .... taken a few more days to really increase the blood levels ..... .. you get the picture ...
"When I first started on the Levo I did worry about taking a synthetic thyroid hormone. I had an idea that taking it might almost tell the thyroid it doesn't need to do its job anymore, by a negative feedback loop. Does that make any sense? "
This is an inevitable effect , because a negative feedback loop is how the system works . (partly anyway .. it's much cleverer than that)
But its not an 'irreversible' effect ....
~ If you take more T4 from Levo , then TSH lowers .
(TSH Thyroid Stimulating Hormone, from the pituitary gland, is what 'asks' your thyroid to produce it's own T4 )
~ If you take less T4 from Levo, then TSH rises .. so if thyroid is able to .. then it produces more T4 again .
However ,. the reason you are taking levo in the first place is that your thyroid is was already struggling to produce enough T4 (hence your TSH rising, and you being diagnosed).
It isn't taking T4 in Levo that is damaging the thyroid... it's the immune system that has already damaged it and will continue to do so... .
eg . If you put someone with a healthy undamaged thyroid on Levo , and then take it off them, their thyroid will go back to producing as much of it's own T4 as the TSH asks it to.
P.s .. there is also no need AT ALL for a GP to need to refer to an endo to manage this. GP's role is to adjust Levo dose to keep TSH within range (at least, and preferably below 2 ) in ALL patients taking Levo. not just those trying to conceive.
They do this by increasing Levo dose when TSH is over range .... yours was significantly over range, and it was GP's job to increase dose at that point ... they only need to refer to endo if they keep increasing dose and it doesn't work to lower TSH ,or patient can't tolerate the increase, or some other issue ...like weirdly inexplicable test results .
But there's nothing inexplicable about you having TSH of 15 when only taking 75mcg... it's clearly just 'not enough yet' ...NHS guidelines suggest full replacement dose is likely to be around 1.6mcg Levo /Kg bodyweight.. in practice most of us usually end up on somewhere between 75 -150mcg.
And what use is 'referring to an endo when he knows you're already pregnant' ?... that would usually take weeks if not months .
Yes, I agree. I just don't know what to do. I've just been tested today, but I'm feeling pretty fatigued and miserable so i imagine TSH will still be too high. But the GP considers anything under 4 as normal so I don't know what to do. How can I increase dose further when the GP says my TSH is normal? I'm so scared that I'll conceive and then lose it again.
This one ..... from page 13 in the liothyronine (T3) guidance... sps.nhs.uk/wp-content/uploa...... NHS consultant endocrinologists may start a trial of combination levothyroxine and liothyronine in circumstances where all other treatment options have been exhausted.
1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine.
(TSH 0.4-1.5mU/L)
2. Where alternative causes of symptoms have been excluded, see box 1 below"
This one ..... from PULSE magazine for GP's... can't find link sorry , but it exists. Admin may have it. SeasideSusie SlowDragon ?
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L." Written for GP's by"Dr Iqbal is a specialist registrar in endocrinology and Dr Krishnan is a specialist registrar in cardiology, Liverpool".
( this is the same one i posted about in the other reply below)
"The goal of treatment is to make the patient feel better and this tends to correspond with a TSH in the lower half of the reference range (0.4–2.5 mU/l).
If a patient feels perfectly well with TSH between 2.5 and 5 mU/l there is no need to adjust the dosage" .
(this is from the same one slowdragon gives a link for , about increasing Levo as soon as pregnancy confirmed)
I totally agree with greygoose and tattybogle . You are taking hormones to replace the hormones your damaged thyroid can no longer make. You have had hashimotos for more than 4 years. during that time your thyroid has been damaged and cannot regenerate. Its output has already been compromised.
You will see by the links in the above post that your TSH is on the high side for conception and pregnancy. It is your TSH, FT4 and Ft3 you need to focus on. Antibodies don't do the harm.
I take the Levo religiously and am really careful with absorption, so I take it first thing on rising, I don't eat anything for an hour after taking it and I avoid calcium and caffeine for hours afterwards as I know they decrease its absorption. So I get really hung up on my routine and I find it quite disruptive to my life. I also reeeeeeeally struggle to wake up in the morning and its usually not til about 4 hrs after I've taken it that I feel my body is awake. I love the idea that my body might be able to wake itself up naturally without having to wait for a pill to kick in, but, as I've read here, I guess that will never be. So yeah, I guess it's just that I don't like the idea of taking a synthetic version of something my body should be making naturally. I never take any other medication, like painkillers etc, unless I really have to. I'm just a strange one like that. I don't believe in 'a pill for an ill', haha.
HiI get where you're coming from, I take my levo at night, there's evidence it's better absorbed. I get up at night to use the loo. I keep a bottle of water next to my bed and my pills and take them then. It's often around 2-3am. That way I've got several hours for it to absorb uninterrupted and it doesnt disrupt food, coffee or other pills like vitamins. Or you could take it last thing at night before bed. As long as your stomach is empty.
A lot of medication is negotiable but like insulin, thyroid hormones we absolutely need and if we can't make enough of them then you have to supplement. There's no effective natural alternative.
Unfortunately as you've got Hashis your thyroid isn't going to recover and if you don't take medication it's just going to get worse and worse. This will impact your health and your hopes for a family. I don't think the inconvenience of taking Levo once a day is worth more than those things. Its not a hill I'd choose to die on personally.
Hi I'm very sorry to hear about your miscarriage, that must have been devastating. I've had a miscarriage and a stillbirth and it knocks you for 6. If you can get on top of your Hashis and optimise your diet, vitamin levels and general health then hopefully you'll have success in the future.
In your opinion, do you think I may have lost the pregnancy last time because my Levo dose wasn't increased right away. I absolutely knew it needed to be. I had all my low thyroid symptoms but the GP just wasn't having it.
I'm so nervous that I'll get pregnant again and the same thing will happen. I really can't go through that again. It was very traumatic. However, I spoke to the GP on the weekend and he said they will ONLY refer me to an endo if I'm already pregnant. If I even manage to get pregnant again, by the time I get on a waiting list to see an endo it might be too late and I'll have the same thing all over again. Would you advise seeing a private endo? I really don't think I can afford it though...
" I did however conceive back in July, despite my TSH being through the roof (15!), so it must be possible, BUT as I said, I lost the pregnancy at 8 weeks and think this must have had something to do with it? "
Tested on 2nd July TSH was 15.09, then for some reason I was tested only a week later, 9th July, TSH was 11.4. I conceived on 23rd July (I know the exact date, hehe). On 12th August TSH was 10.5 and I increased the dose then from 75mcg to 100mcg but it was obviously too late 😔
regardless of 'trying to conceive' or not. ... your dose should have been increased straight away when they knew TSH was above the reference range.. let alone as high as 15.
The 'retest a week later' may have been prompted by the 15 being so high ... (asked for by a GP to to check the 15 wasn't a lab error / interference/ one off ? )
So even allowing for the '15' to be rechecked .... then as soon as they had it confirmed as 'definitely far to high' at 11.... then your dose should have been increased the same day.
If it had been increased on the 9th/10th ... that's 2 weeks before you conceived... so yes, that's long enough to make a difference .
If GP knew you were considering a pregnancy at this point , it was negligent to not increase dose as soon as the 15 was seen /confirmed.
( i thought about reconsidering 'negligent ' .. but i'm sticking with it )
..... but playing devils advocate....Perhaps GP didn't know about the '11' and the 10.5 6weeks later was them 'confirming' it was too high ?.... but i don't see how GP would be unaware of the '11' result .... if you can see it now .
But as i say .. even in someone not trying to conceive... GP should have increased dose as soon as they saw TSH 15 ... there isn't a requirement in guidelines to recheck result , and many GP's would have simply increased straight away on he basis of the '15'
!! Edit !!.
use the link to 'GP online' article in this post to show GP that TSH should be kept below 2 in ALL patients.. not just those trying to conceive . healthunlocked.com/thyroidu.... (gps-told-keep-tsh-0.5-2pmol-l-hypothyroidism-causes-raised-cholesterol-thyroid-disease-effects-on-heart-and-cardiovascular-system.)
Hi and welcome hashihol . I see this is your first post, may I suggest you pull up a chair and get a cuppa and begin your journey into your condition by scrolling through the many, many, many posts on here. There’s a bit of learnin to be done 🤗 Would a diabetic decide they not going to take their insulin no more? Would someone with PA decided that B12 is for wimps? Would someone with coeliacs just tough it out?
C’mon now, time to put your big girl pants on and adjust your mentality 🤗
As far as I knew, this was a network for support with health conditions. I asked some questions for people to give me their opinions on. Being told I need to 'put my big girl pants on' when I've just written a post about a recent miscarriage is, I think, pretty harsh, upsetting and really condescending, regardless of the emojis. I have been doing a lot of learning over the four years I've known about my condition and I came here for support and advice. As I said in my first post I have been taking my medication and didn't say I was about to come off it, I asked whether people thought it was possible. Maybe you should adjust your mentality to be kinder and more supportive...
I apologise that my response didn’t land well with you and yes, this is indeed a support network for thyroid and all the shit that comes with it. I guess my response was a gut reaction to you thinking you can reverse the damage that’s been done to your thyroid, your opening statement was shocking and I wondered if you’d read any of the thousands of posts that all the other posters had written. You didn’t say that you were about to come off medication but again, read your opening statement and think how others would read it. I am sorry that you have experienced miscarriage. You’re not alone, many of us have horror stories and many of us are here, every day, supporting, replying, passing on knowledge, we take time away from our families, make it our past time to support. There are over a hundred thousands members. It feels like a never ending loop of the same problems coming up everyday, I’m glad that there are so many personalities to reply and I’m glad you’ve found comfort in the replies of others. I wish you all the best on your journey.
I’ve had rheumatoid arthritis for fifteen years now, and had to take some very unpleasant drugs in the past to keep it under control and allow me to live a reasonably normal life. Like rheumatoid arthritis, as you know, Hashimoto’s is an autoimmune disease. Unlike RA the treatment for Hashimoto’s is simply replacement of the hormone your thyroid is no longer able to produce. It is quite possible that any autoimmune disease can go into remission, but that doesn’t mean it’s not there, just that it’s not active. My RA was in remission for six years, but it’s starting to show itself again. Unfortunately you are going to need to take some form of thyroid hormone replacement for the rest of your life, but, if you want children, it’s a price worth paying.
Thanks for your reply. I was recently tested for RA too but luckily they said there was no evidence of it. That must be a really tough one to live with!
I totally understand where you are coming from. I always want to deal with everything myself and to avoid medication at all costs but, as others have said here, you are simply replacing something that your body is not producing. Without it, ultimately we would die. I also have Hashimotos and it took for ever for me to be diagnosed. Thyroxine is not brilliant and it doesn't solve all my problems but it keeps me functioning. I would much rather deal with my hypothyroidism the "natural way" (whatever that may be), and indeed you can do an awful lot to improve your condition by taking supplements and modifying your diet and so on, but ultimately, we need the thyroxine to function.
I can't help on the pregnancy front but I imagine that taking the right supplements and eating well will go someway towards helping. When I was trying to conceive (many, many years ago) no one even thought to test for hypothyroidism. Good luck !
Thanks so much for your reply. It's so reassuring to know someone feels the same as me! If you don't mind me asking, did you manage to conceive eventually? You said you were trying many years ago. It's so sad you weren't tested for hypothyroidism. I hate thinking about how long I went without being diagnosed and how much happier I could have been beforehand had I known something was actually wrong with me and I wasn't just being a hypochondriac!!
Sadly no but that was the late 1980's and I think a lot of progress has been made since then and IVF and other forms of assisted conception, although far from being perfect, have a higher level of success than they did then. Perhaps it might have happened if I had persisted but, for a whole lot of reasons, we decided to give up and move on.
You seem to be low on progesterone - low progesterone is linked to misscarrige and autoimmune disorders so perhaps you could do some research on that Natural progesterone cream is really effective and safe you can buy it online
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Robots and AI are coming to healthcare
Conned into coming off 
Has anyone here come OFF levoxy?
Weaning off Levo help please + test results
Hashis: 1st results after starting Treatment with Levo...
