Getting off levo is possible. My experience. - Thyroid UK

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Getting off levo is possible. My experience.

ThyroidLadyLondon
ThyroidLadyLondon

I stopped taking levothyroxine in May after weaning off it for a year and a half. For those that are interested in what happens when you wean off levo - it takes about a month/month and a half for the body to adjust to not having the external hormones coming in. For me, one of the surprising changes was the discovery of orthostoic hypotension, which is when your blood pressure drops when you stand up. This turned out to be relatively easy to resolve, by drinking lots of liquids, increasing salt intake, wearing pressure wear, and in my case taking iron tablets to increase my iron levels.

Four month on and having gone through that initial adjustment I feel pretty much back to normal, and definitely much better than when I was on levo. I no longer have "air hunger", I don't have an abnormally increasing heart rate when doing mild exercise, and best of all - an end to anxiety and panic attacks that became part of my everyday life.

For background, I started off being severely hypo about three years ago, with a TSH of over 100 and t4 way below range after the birth of my second child. I was started off on 50, then 75 and at the height on 100mcg of levo per day. I felt like crap and I looked far and wide for alternatives to getting better. The solution for me was a drastic reduction of energy expenditure, significantly increasing rest and sleep and reducing stress as much as possible, taking in adequate iodine and selenium as well as adjusting a pretty significant iron defficiency (lost blood in two births two and a half years apart, and was at the very low end of "normal" for iron). My TPO antibodies were highest after getting off levo and at one point or another I was "above normal" for all three of the main thyroid antibody types - TPO, globulin and TSH receptor. I pay little attention to these numbers. I have regular ultrasounds and blood tests to keep an eye on things, but basically a) the thyroid heals, b) it is possible to get off levo and to feel like a human again.

196 Replies
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I have never heard of the thyroid healing so this is news to me. I personally would not recommend anyone stopping their medication if they are hypothyroid. What are your levels at the moment?

I wasn't hypothyroid when I got off medication. I was making enough t3 and t4 on my own.

So why were you taking it?

I was severely hypothyroid three years ago.

I think the title of your thread is very misleading and anyone who has hypothyroid must never stop their medication or reduce it because they can become very unwell. Perhaps you should add that you were suffering from postpartum thyroiditis so not to confuse members ..

my hyperthyroidism started after pregnancy. According to the common definition of post partum thyroditis, it should have resolved itself after a year. It did not. I was positive for each type of thyroid related antibodies. I was on levo for over 3 years starting with a TSH of 100 and t4 way below range. So no, I am not misleading anyone.

The title is misleading and I am not the only one who thinks so. Just to add I have taken both Levo and NDT in the past to help me go into remission from Graves' disease. This was after being treated with PTU and I was advised to do this by Elaine Moore who runs a support site in the US. At the moment I am taking nothing because I am in my second remission but I know this won't last forever. I don't think I will ever heal my thyroid because I have a multinodular goiter.

what do you find misleading about "gettin of levo is possible. my experience"?

Yes it is in your "experience" but the title implies that anyone can stop taking Levo which is not always possible.

Can you post another link of your youtube video I am very interested to see it. I don't think it will trolled on a site like this one because this is a support site for thyroid disease sufferers and we are all looking to improve our health. I myself have been a member of many sites here and in the US and they have all helped and advised me.

Mostew
Mostew in reply to Lora7again

Nothing lasts for ever !!!

This seems to be a case of transient hypothyroidism as a result of pregnancy. People with Hashimoto´s usually cannot go off their medication. I agree with your advice not to do it!

How do you know if you’re making it or it’s the tablets though 🤷‍♀️

if you are reducing your dose (very gradually) and your t3 and t4 stay in 'normal' then your thyroid is recovering and making more of its own hormones. I also had regular ultrasounds which show areas of healthy vs damaged tissue.

I'm really happy to hear you're feeling better, but one thing I wanted to mention is that I've heard from many places that taking iodine is bad with Hashimoto's.

Lora7again
Lora7again in reply to Zazbag

Yes I have heard that as well.

why is it bad?

Iodine was once used to treat hyper patients to stop the thyroid producing too many hormones. So if you are already hypo............

my understanding is that iodine is used to stabilise hormone production and reduce hyperplasia of thyroid cells in iodine-deficient patients with a goiter, not that it leads to the reduction of thyroid hormone production by the follicular cells. We need adequate iodine to make thyroid hormones, and the current situation in the west is that we are likely to be mildly iodine deficient as a result of our diets, particularly if we are dairy-free. This has been noted in adolescent girls and pregnant women recently. It's not like it will heal hypothyroidism on its own, but we certainly shouldn't avoid iodine.

We should avoid iodine if we are not deficient. I would always advise folks to get tested first before taking any supplement.

clearly we should all get tested before taking any supplements. but why 'avoid' iodine, isn't that precisely what would lead to a deficiency?

No not avoid iodine. Avoid additional iodine such as supplementing with iodine rich products such as kelp if we are not deficient as this would cause an imbalance.

That is very different. If you are satisfied that you have a varied enough diet, including fish, dairy, iodised salt or seafood - sure. There are many people that don't, and the populational studies show that we are more likely than not to be mildly deficient with typical western diets. In addition many people with thyroid problems chose to limit their diet, including going dairy free, so telling them to "avoid iodine" is not a helpful blanket policy.

LuckyKat
LuckyKat in reply to Lalatoot

Iodine was used to treat both hyper and hypo conditions - it's about reaching sufficiency.

greenmedinfo.com/blog/iodin...

You should also be aware that Hashi's can go into remission - or perhaps I should say a euthyroid period between a 'hyper' swing, and going back to hypo - that can last for several years. But, sooner or later, one goes back to being hypo.

Mostew
Mostew in reply to greygoose

We can live in hope though !!

greygoose
greygoose in reply to Mostew

Not really, no. That would be a bit unrealistic. I've seen it so many times on forums. People go into remission, and start celebrating that they've 'cured' their Hashi's with whatever they've been doing. But, sooner or later they're back on the forum wondering what the hell happened. Oh, well...

Smomo
Smomo in reply to greygoose

Where there's life there's hope!!!

I think she is sensible enough to monitor her health and take meds again if proved to be needed

greygoose
greygoose in reply to Smomo

I'm quite honestly not in the least concerned about whether she is or she isn't. What worries me is the fates of any newcomers that don't yet have much of a grasp on how it all works, but are tempted to try it. You need to know the rules before you can get away with breaking them.

Smomo
Smomo in reply to greygoose

Rules and breaking them?????!!!!!!!

I can see that some people are very vulnerable and not able to check out what is suitable for them. X

greygoose
greygoose in reply to Smomo

Oh, things like a topic that was discussed on here recently, like increasing by too much too quickly. You have to know the possible consequences and what expect. And then what to do about it if the worst happens. That's what I mean by knowing the rules before you break them. But, it applies in all walks of life.

Smomo
Smomo in reply to greygoose

Yes, we have to take responsibility for our actions don't u think.

I do like how we can have a good debate on this site....

I read that taking iodine stimulates the thyroid which increases the autoimmune attack.

Congratulations on your recovery and thank you very much for sharing what you feel led to your recovery. I wonder if the difference is that you were post partum and Anaemic. I wish you all the best and please let us know if your recovery is sustained. I do hope you keep well x

Thank you Michelle!

SeasideSusie
SeasideSusieAdministrator

I think it should be made clear that this member has Hashimoto's, possibly post partum thyroiditis which can reverse, and we all know that Hashimoto's has it's ups and downs and there can be periods when thyroid hormone replacement isn't necessary (my ex-daughter-in-law experienced this).

However, it is very important that we realise that those who have had thyroid removed or primary hypothyroidism not due to Hashi's, need thyroid hormone replacement, their thyroids will not "heal", they are either destroyed or just don't work for whatever reason.

So the statement

but basically a) the thyroid heals, b) it is possible to get off levo and to feel like a human again.

is not fact and nobody should try coming off Levo just because this member has.

I agree with SeasideSusie . Coming off levo had the opposite effect for me. See here healthunlocked.com/thyroidu...

Oh that makes sense now ... I thought it sounded a bit strange.

I’m sorry but that is totally taking what I said out of context. If a person with a broken leg has their bone heal, you’re not going to say he is lying because amputees or people born without legs don’t have their legs growing back. And that nobody should be throwing away their crutches just because this one person has been able to walk without their help. That’s unhelpful and illogical.

I no longer have "air hunger", I don't have an abnormally increasing heart rate when doing mild exercise, and best of all - an end to anxiety and panic attacks that became part of my everyday life.

These are all symptoms of iron deficiency. When I improved my own iron I got rid of air hunger and a heart rate which became erratic or much higher than it ought to be.

But finding out that improving my iron also got rid of my anxiety and panic was a revelation, and an unexpected and very welcome bonus for me. It doesn't seem to get a mention much in the literature, that I've found.

The other thing I had with iron deficiency was severe chest pain. I discovered that got mentioned in some US sources of info, but I couldn't find it mentioned in any UK literature.

If you have Hashi's then you can't assume that you won't need thyroid hormones ever again. I would agree that taking Levo is a bad idea if your body appears to be producing enough hormones by itself. But in someone with Hashi's these thyroid hormones might be being produced by the destruction of your thyroid.

The only thing I would suggest you do is to get plenty of testing done once or twice a year. Maintain your vitamins and minerals as close to optimal as you can. Look out for symptoms of low or high cortisol. And if you ever do need to take thyroid hormones again you will already be in the best health possible for taking it.

Thanks for the kind words, and yes, I agree that low iron is very seldom taken seriously. As is low iodine. Many people in the so called "developed world" are iodine defficient, so much so that it should probably be universally prescribed to pregnant women, like folic acid. At the very least tested.

So , this raises an interesting question which i have wondered about often . ..if someone has post partum thyroiditis,( which is said to resolve within about a year if it is going to resolve at all ) and they are given thyroid hormone replacement, then how do you know if their thyroid has got better while they are still taking hormone replacement ? do they end up taking them for life when there was no need ? unless they do what is suggested by this post and stop taking them altogether, and see if they are ok without ?

Are GP's supposed to avoid prescribing replacement hormones until they are sure it's not going to resolve on its own ?

It is interesting that this poster was tested for TRab as well as TPO and TG ab's. There are two types of TRab's one is 'stimulating' which leads to over production of hormones and the other is 'blocking '. we do not know which of these ThyroidLadyLondon had, or whether she has some of both which could balance each other out at times. This is found in some people with what is sometimes called 'hypo Graves'... ie Graves with 'blocking' antibodies so the end result is Hypothyroidism.

So , what type of thyroid problem do we think Thyroid LadyLondon was suffering from at diagnosis ? Post partum thyroiditis that was treated too early with hormones without giving chance to see if it would resolve on it's own ? or Hypo Graves which has balanced itself out at the moment, and therefore may still be problematic in the future ? or something else ?

I don't think i buy the idea that Hashimoto's or Ord's would get better on it's own , and i don't buy the idea that it is the weaning off of hormones and reduction in energy expenditure and stress levels that has caused some sort of healing of the thyroid in this case. I think it seems that she didn't need the hormone replacement any longer, but the question is why ?

greygoose
greygoose in reply to tattybogle

Agreed, this does raise more questions than it answers.

One thing I've never found a definite answer to is: are TPO antibodies present with post partum thyroiditis?

I also wonder why they tested for Graves when the OP has a TSH of 100. What was the purpose of that test?

There are two types of TRab's one is 'stimulating' which leads to over production of hormones and the other is 'blocking '.

But, I though TRAB was 'blocking' and TSI was 'stimulating - or the other way round.

A thouand other questions are swimming round my head, but haven't yet transformed into words...

TSH is not the only way that the thyroid is stimulated. It is significantly stimulated by the nervous system, independently of TSH.

I don't think I mentioned TSH, did I?

I've never heard that before, perhaps you would be good enough to post a link to that information. It would be very interesting to know, if it's true. :)

I'm sure you can google "innervation of endocrine glands" if this is something you want to learn about.

Certainly I can. But seems a bit stupid when you already have the information.

Thank you for all your help!

Innervation

The thyroid gland is innervated by branches derived from the sympathetic trunk. However, these nerves do not control endocrine secretion – release of hormones is regulated by pituitary gland.

teachmeanatomy.info/neck/vi...

yeah, I read that. That is incorrect.

helvella
helvellaAdministrator in reply to ThyroidLadyLondon

So what is correct?

I have long felt that the innervation of the thyroid must be of some interest and consequence. But have never found anything to explain or back up that - which is just a hunch or guess.

The internet is full of information that oftentimes is incomplete or incorrect. The subject of innervation of endocrine glands is a fundamental part of medicine and is not a matter of reading a single "link", it is a subject of fundamental study - medical textbooks, med school lectures, reasearch studies of groundbreaking scientists and so on. From my understanding of this site, its administrators and its readers, none of you and us are medical specialists, and are all simply grasping at straws of a subject we have very limited understanding of.

If I send you a link that studies sympathetic innervation of the thyroid in mice:

academic.oup.com/endo/artic...

you will say, yes but these are mice, send me a link of a study in people and randomised control studies of something or other. Oftentimes studies just don't exist on certain subjects, for which there can be many reasons. From inability to do certain studies on humans, disinterest of the funding community to sponsor certain lines of research, partisan nature of medical research funding, lack of expertise and so on. This is why we have forums of us 'non-experts' where we share snippets of personal practice of what "worked" and try to draw our own conclusions to help ourselves where the medical establishment has failed us. If the type 1 diabetic community was able to come together to create a 'synthetic pancreas' where a multibillion dollar industry could not, i'm sure there is every possibility of the thyroid community finding its own novel solutions to its problems. I am just doing my bit to share what worked for me, I don't lay claim to being a messiah, but maybe perhaps prompting some of us to ask some new questions and seeing where they take us. I will not be drawn into a debate to "prove" medically complex issues that should be answered by people who are genuine experts in those areas. I work in a bank for goodness sake . Ive done my best to understand what has been happening to my body and I will share the journey that I have travelled and what I have learnt on that journey. I will not, however pretend or even try to present myself as an expert in subjects that are far more comlex than most of us here, can grasp.

From my understanding of this site, its administrators and its readers, none of you and us are medical specialists, and are all simply grasping at straws of a subject we have very limited understanding of.

I think you underestimate the intelligence and learning capabilities of many members of this forum, and overestimate the abilities and understanding of the average medic. Medical students are usually diligent people with retentive memories: they have to be. The crucial ability to think critically is not often part of the mix, and it certainly isn't enouraged by standard medical training.

I agree with you on a general level, but I’m really talking about those medics that are real professionals. If I need to build a bridge over a river, as a person with a politics and a law degree I might be able to make some sense of the general processes involved. But even with that, I’d be hard pressed to argue with a structural engineer about this or to lecture other non-engineers on the subject. I feel it’s the same issue here.

I don't agree. Medicine is unlike the professions you mention. Not much in clinical practice (I'm not including surgery) requires specialist skill or understanding of conceptually difficult ideas, merely the learning of rote facts and a basic grasp of systems. The application of that knowledge is where many come unstuck, and we see the evidence of this every day, year in, year out.

You'd be surprised how many civil engineers don't have a qualification, and simply learned the job as they went :D I know of a bridge engineer who only has a geography degree, but can call herself a civil engineer because the title isn't protected.

I feel like we are getting off subject a little bit. I might be lucky to be surrounded by many people who are genuine experts in their fields, including a best friend who is a bridge engineer, and an excellent one at that =) I’m sure there are many people in the thyroid community being treated by poor quality doctors. And mediocre doctors and good doctors just following but not questioning protocols. Indeed they cannot, they can be sued. And we can question that, after all we are patients not slaves or robots. I certainly found this in the obstetrician vs independent midwives debates where midwives question, with incredibly sound evidence, the approaches that obstetricians take towards women in pregnancy and birth. Again, very procedurally driven medical practices that have been shown to be detrimental to medical outcomes for women. And yet those practices and those procedures don’t change, because there isn’t adequate challenge, political will, funding, etc, and because, crucially, patients aren’t experts. What I’m getting at is that there needs to be more flexible debate among experts which we are just not seeing in the field of thyroid disease. And many other fields too. 100 years on after the discovery of insulin we have not progressed a great deal in the treatment of diabetes. Levothyroxine is now among the fastest growing prescriptions in the world and people are staying on levo for longer, as it’s cost continues to rise on a per pill basis year on year. I’m not seeing any challenge to this. I’m not seeing any questioning of this trend. Why are we seeing this? What are the causes? What can be done? Why is no one asking these questions? I think there are systemic issues at play that should be addressed by the industry, with us, the patients putting the pressure on to get us answers that we just aren’t getting.

It was really intended as an aside, not meant as a commentary on thyroid treatment :) I just found it interesting you had chosen that as the comparison for a profession that should be qualified, when we have such a gripe in the profession about unqualified people infiltrating.

I think most of us are here because of the ineptitude of many ‘real professionals’. We respect those medical professionals who demonstrate an understanding of our conditions and how to deal with them - but we refuse to deify the profession per se or to perceive them as above reproach or criticism

The same applies to Professionals in all disciplines. It’s perfectly possible that the best people to build your bridge could be The Billy Goats Gruff.

But that’s exactly what you have done

I fail to see why we're discussing the TSH, anyway. What has that got to do with you coming off levo? Did I ask you about your TSH?

tattybogle
tattybogle in reply to greygoose

Last time i tried to get my head round TRab's this is how far i got;

T(sh)Rab= Thyroid Stimulating Hormone Receptor antibodies ,

2 types...blocking/stimulating

TSI =Thyroid Stimulating Immunoglobulin test.

Sometimes the stimulating antibody is written as TSab , it mimics TSH at the receptors so has the effect of more TSH than there really is.

TBII = Thyrotropin Binding Inhibitory Immunoglobulin test. This test is v. hard to find anyone who can do it nowadays.

Sometimes the blocking antibody is written as TBab , it blocks TSH receptors so TSH can't do it's job.

But it gets complicated

TBII 'measures the degree to which TSH receptor prefers to bind to the antibody rather than real TSH molecules.

TBII doesn't discriminate between 'blocking' or 'stimulating' antibodies.

Which i think means that the TSI test focusses on the stimulating antibody alone , and the blocking antibody is hard/impossible? to measure.

I seem to remember this poster had/has extensive private testing and ? some Russian doctors, so that may explain the TRab test.

I wish we all had all our antibodies tested, i think much would be learned over time about the varieties of thyroid disease. For example i read that up to 20% of Hashimoto's patients have TRab's, either Stimulating or Blocking ( Tania S Smith's- thyroidpatients.ca - article , TSab Antibody and TSH)

I too would like to know how many Postpartum Thyroiditis patients have antibodies, and does this relate to how many resolve naturally ?

But since antibodies fluctuate, and are not always present even in Hashimoto's when we would expect them to be, i doubt anyone will think it worth the expense of testing enough people to ever find out anything useful.

I did have "some Russian doctor" looking after me. It is thanks to him and his expertise that I am able to write the post above. A bunch of different doctors in the UK and Spain were not able to make half the sense he did. The role of the immune system is a red herring. What everyone seems to forget is that the primary stimulator of all endocrine organs is the nervous system. Whilst this is taught in medical school it is somehow never utilised when treating patients.

Russian medicine interests me, i heard recently that their approach to Antibiotics went off in a different direction to ours during the cold war and that they focussed on something called 'Phage's ' ( i think), which are very specific to the target , unlike our broad spectrum antibiotics. These sound like a very good idea , since we are now facing huge problems of antibiotic resistance. But the West doesn't seem interested in learning about them.

I have never heard mention of the nervous system stimulating the endocrine system from any UK doctor of conventional medicine, but that doesn't surprise me since they seem to have no idea that 'you are what you eat' either !

So is it an 'actual' stimulation that science acknowledges , or is it a 'chi' energy thing ? ( I think both are important )

Russian medicine and science has been going down the pan since the collapse of the soviet union, but it is true to say that the lines of enquiry have been different among the scientific community. The role of the microbiome has been discussed for over 100 years in Russia, following the work of the nobel prize winner Ilya Metchnikov, and "disbiosis" was a condition that has been commonly treated with "beneficial bacteria" for a very long time, for example. There are some outstanding people are still around which recieved their training in soviet days. My "random russian doctor" is undoubtedly of that ilk. I have seen several extremely mediocre, and downright bad doctors before him though. I had disastrous low level laser treatment, which I have written about on this forum before. I actually went to him for a second opinion, because he also had an understanding of of LLLT.

Well i'm pleased you found your own way through this despite the lack of knowledge/interest we have to deal with from Doctors of all nationalities.

Thank you for updating us with you situation now you have been off replacement hormones for a while, I hope you continue to be well. (maybe stay away from stress and don't have anymore babies would be a good plan, lol )

please will you let us know how you get on in future ? it looks like forums like this are the future for understanding thyroid problems, since doctors nowadays arn't interested in trying to understand what's going on with us.

thank you! I may help my "random russian doctor" to translate and publish some of his recent books on the subject, as he is only published in Russian at the moment.

That would be daubra (?) , my Russian is napoo (?)

This is the limit of my Russian Language, I found it in my grandfathers diaries from 1919 when he was stuck in Murmansk and Archangel.

none of those words make any sense =)) Good on your grandad for getting out from Murmansk and Archangel alive. Not the most hospitable of places in the world. You jogged my memory actually, on a study of men living in Siberia (6 months of winter, but probably a bit milder than Murmansk and Archangel), where their TSH was shown to go up in the winter months - presumably to stimulate additional thyroid hormones to maintain core body temperature in the cold. I must find the study, it was in one of the Russian books ...

The words could be spelled incorrectly, his diaries were tiny and written in again between the lines as there was no more paper..... he seems to have used daubra/doubra ? to mean 'Good' and napoo to mean 'rubbish' , much of it is indecipherable , but they clearly were not having a nice time stuck in Murmansk for the winter . It seems everyone Russian and English was either starving or freezing..... and then in the spring they got sent to help with a hasty retreat down a river at Archangel in a plague of mosquitoes. He was only 19 and WW1 had supposedly finished, but they wouldn't let his regiment disembark, and sent them off to Russia on the quiet, with broken down ships and no warm socks or boots for a year to help the White Russians .... He came home with a very poor opinion of the British Army, and a great deal of sympathy for the Russian peasants.

Northern Russia must be a really bad place to be hypothyroid, I struggle with the cold in Northern England !

Please tell me his name and the names of his books. I am Russian, so will be able to read them.

greygoose
greygoose in reply to tattybogle

Well, you've got further with it than me, then. It's all Greek to me. Probably because I don't have Graves, so never took the trouble to learn too much about it.

I'm really not "selling' anything here. I am stating what happened and what I did. The hypothyroid state developed after my second pregnancy. I was very severely hypo, and I could not have managed in the initial period withod the levo, as my t4 and t3 were very low. I was passing out in the middle of the day and really unable to function. My TPO antibodies at initial diagnoses were relatively low and at some point "in range'. There is no protacol in the UK and in most other countries about how to get you off levo. I asked this at the very start of being diagnosed. I also asked the question about whether the thyroid heals and was not given a coherent answer. I asked if being on levothyroxine would undermine my recovery, if there was to be one, and was not given a coherent answer. I was told that some women recover from PPT and other don't but we don't know why some do and some don't. I was told that if you have PPT once you are more likely to have it again, again without explaining why. Since I was a healthy woman prior to all this happening to me, I went and sought my own answers and listened to my body in term of what made me feel better and what made me feel worse. I also ordered my own tests privately, which is where I know I had all the antibodies out of range at some point of another. It has been some months since I looked at those so I don't know where they are at the moment. As I have said, I pay little mind to them, either way.

Mostew
Mostew in reply to tattybogle

I think there is never one reason . Rest when our body is stressed is def good . Our culture doesn’t allow for slowing down...

what works for one person might not work for another

Our minds also have a big part to play ..

Wow..

100 tsh seems like an extraordinarily scary number. We receive health exemption cards in the UK based on the fact that hypo isn't reversable. This is my understanding otherwise.

The TSH crept up gradually. It was about 10 at 4 month port partum, then about 72 when I started feeling pretty unwell and over 100 shortly after. I have the exemption certificate. I have no use for it now though. The point about TSH is it is not the finitie indicator of whether your thyroid works. T3 and T4 are. When your TSH goes up, it stimulates the thyroid to make more hormones/make them at a faster pace. If TSH goes up but your t3 and t4 remain "normal", this means that your thyroid is able to keep up with your body's requirements for thyroid hormones. At my lowest, my t3 and t4 were noticeably below range and TSH was in overdrive. I have also been in a situation when TSH was elevated, at around 6-10, but both t4 and t3 being normal. Funnily enough, after coming off levo, I have had tests when my TSH was actually lower than when I was on it, with normal reading s for t4 and t3. So just racking up levo doses in order to "bring down TSH" is not a great strategy, in my experience.

Keep the exemption card. It's free meds for life.

I know, but kind of hope I won't have the need =)

If you plan to live a full life, then you will need some medication sometime.

I plan to live a full life without, fingers crossed =)

SlowDragon
SlowDragonAdministrator

Have you tested cholesterol levels?

why?

SlowDragon
SlowDragonAdministrator in reply to ThyroidLadyLondon

High cholesterol is linked to being hypothyroid

I am no longer hypothyroid.

SlowDragon
SlowDragonAdministrator in reply to ThyroidLadyLondon

So it would be worth checking your cholesterol to see if that also confirms this

To be honest I have had more tests than I would have wanted to have in my whole lifetime in the last few years. I just do the essentials if I am feeling well.

Thank you for your interesting post. I scrolled back through your posting history and saw you had a YouTube video but despite clicking on the link I was unable to access it. I found it very interesting that your doctor in Russia had a different perspective on Hashimoto's and that, as a result of taking his advice, you are currently free of symptoms- I think this is what we all want whatever method we use to achieve that end. I also thought it fascinating that your doctor used blue light therapy. Do you know what wavelength he used on you? Blue light phototherapy has long been accepted for neonatal jaundice (for its effect on bilirubin) but I have not heard of it being used for Hashimoto's.

Lora7again
Lora7again in reply to Jumbelina

Yes the link did not work for me either.

he doesn't just use it for Hashimotos, it is particularly effective in hyperthyroidism. It has a sedatary effect on the peripheral autonomic nervous system. It literally sedates the nervous system, which in turn reduces its stimulation of the thyroid. We actually only had one go with me, because I was experiencing pretty bad side effects from the LLT laser therapy, my nervous system was pretty out of whack. He advised me on a few over the counter medications, which also had a sedative effect and really helped me with the horrible side effects of the laser. Over time I stopped using them though. Needless to say anything that stimulates the sympathetic nervous response, caffeine in particular, was out.

I wasn't very comfortable leaving a video of me online =) I'm just not that person it turned out , and the trolling gets to me =) More than happy to catch up individually with people though - through facebook or through private messages here. I feel it's important to share what I have gone through because there are so so many of us that are dealing with this. I don't claim to be a medical expert, and literally just sharing what I have gone through, in case people find something in this that helps them. I have tried to be a sensible sceptic, but I have experimented on myself in ways that many people won't be comfortable to. And that's fine, we each have our own path. This one was mine.

Yes I completely understand about the video- I'm sure I would feel the same. Most of us here are unable to receive any therapy other than Levo on the NHS and we need to educate ourselves about nutrition, vitamins etc.- so your experience in Russia is a revelation- especially as it worked for you. It is so good to hear success stories. I know of the effects of blue light on the liver, on SAD and entrainment/disruption of circadian rhythms but I didn't know about its effect on the nervous system. At the same time I think I read something very recently about the effect of light on the parasympathetic nervous system but I think the light used was Far UV- that's why I asked about the wavelength he used- it can be very specific. All extremely interesting and I will have to investigate further.

It is very specific, you are right, and my understanding from talking to him, is that he has been experimenting with different wavelengths for a while to find what works best. He also does some investigating to discern where specifically there is more stimulation from the nervous system. So when you do an ultrasound of the thryoid for example, you might see that there is faster blood flow on one side compared to another, and the sizes of the thyroid halves might even be uneven in volume. So he directs the light on that side more. But again, the light therapy is not a 'cure all', it is just physiotherapy to calm the nervous system and is part of an overall lifestyle change, which is actually the primary recommendation. Calm down at all cost, reduce movement, increase rest and sleep, stay warm, reduce sympathetic nervous stimulation as much as possible. It doesn't cost anything and you have to do this for a long time. The thyroid then heals, just like any other part of the body, when it has the right environment for regeneration.

I wonder why your post title says 'coming off levo is possible'? You make it sound like a nasty drug that we're all hooked on, rather than the replacement hormone our thyroid cannot make for itself. You're very fortuate to have a thyroid that has apparently healed enough to supply you with the vital hormones.

That may be how you read it, which is entirely subjective. I don't think I am "fortunate", nor do I think I am unique in either a) having a bad experience and many side effects from being on levothyroxine, and b) creating conditions for the thyroid to heal and produce adequate horomones for my body's needs. That is why I am writing all this.

I agree StitchFairy I find this whole post a bit patronising; as if the rest of us aren't trying hard enough to 'come off' Levo or aren't willing to. 🤷🏻‍♀️

ThyroidLadyLondon might be one of the very, very few lucky people whose thyroid has permanently recovered. It's also likely though that as she gets older and the later in life female hormone issues come in to play, she will find herself needing thyroid hormone again. Only time will tell.

Again, I am not "lucky" or "fortunate" or unique. There is literally nothing special about me, my body or my case. If you wish to view it in that light that is your choice, not an objective fact.

By insisting you are not "lucky" or "fortunate" or "unique" you are denying that many many others with Hashimotos will never heal or recover from it; the implication is that they are not trying hard enough or "willing to experiment on themselves".

If that is what you took away from all of the above - that is entirely your choice.

How does another person sharing their life story make you feel patronised? Why would you have that reaction?

🙄 yawn.

indeed.

I don’t find the post patronising at all I found it interesting .The sarcasm and bordering on rude responses to thyroidlady are not nice to read and remind my why I don’t come on this forum as much as I used to. The world is a crazy place with Covid worries etc. Surely we can at least be pleasant? We don’t have to agree with what a post says - if it’s not to your liking just move on .

I appreciate the comment, thank you. Also not the first time I received similar types of responses on this forum. I'm trying to remember that there are people to whom this might be helpful and focusing on that. Even if it is one in ten people who read it. Thanks for the positivity =)

Just to let you know , i'm finding your story interesting and thankyou for posting it .

The whole subject of thyroid problems and how the body regulates itself is far more complicated than conventional western medicine would understand, even if it was interested in looking for holistic answers which it is clearly not. I Think we should be open minded about other ideas, and while a healthy amount of scepticism is wise, it's not as if anyone has all the answers or none of us would have found our way here.

I agree with you, Just being told " your immune system is attacking your thyroid , we don't know why, or how any of it works, or if there is a way to stop it and help yourself, and we're not looking either, have some Levo and go away".... was never a good enough explanation for me either.

Why are you here if you no longer have a thyroid problem? Surely you have more worthwhile things to do with your time than to come here and gloat.

If you find this story so unsightly, why are you commenting? Surely just move on to something you DO find helpful.

My curiosity got the better of me I guess. I find people with your attitude difficult to fathom. But you're right, I'll move on now as this kind of interaction isn't beneficial to anyone.

NWA6
NWA6 in reply to StitchFairy

StitchFairy. I had a similar reaction when I first read ThyroidLadyLondon. I’ll describe it as ‘suspicious’. Maybe I thought the story was there to ‘sell’ or endorse but actually I’ve stopped myself from posting incase I came across as spiteful and judgy.

I too have not ‘followed guidelines’ when adding my T3 and it went well for me. And aren’t most of us so annoyed at how driven our medical professions are about follow rules and staying within their guidelines. Dismissing the fact that we’re individuals, our symptoms, putting us in a box and then blaming us when we don’t ‘get well’. It must be our fault because science doesn’t lie!

When in actual fact everything is subjective when we don’t know everything about a subject. So I’ve sat back and I’ve read with interest all the responses. I’m very sure that my ‘fight/flight/freeze response ‘switched on’ my Hashimotos as it can for many other diseases and conditions. Therefore I’d be really interested in watching how ThyroidLadyLondon’s story unfolds.

As with everyone on this forum I can only hope for the best for everyone, we may be under the same umbrella but our stories a d paths are quite unique.

Please anyone who has some positive outcome should come on this forum /my private Endo ( who spends time researching in Japan) has proposed I also come off Levo he reckons it’s counterintuitive but has had success with some who were misdiagnosed in the first place -worth a try?

greygoose
greygoose in reply to Legoparis

Why would he think you were misdiagnosed? That is very rare in the thyroid world. They miss many cases of true hypothyroidism, but rarely give a positive diagnosis by mistake.

Legoparis
Legoparis in reply to greygoose

Hi greygoose I was slightly underactive around menopause (having been hypo after my 2nd child and recovered after a year) 15 years no symptoms then started to get tired weight gain etc and blood showed slightly underactive so put on Levo (100) for 14 years never really well -came on this site started to understand impact of supplements and diet and now ( same) Endo thinks could probably manage without /I guess we’ll see -will keep you posted

I was not misdiagnosed. I was very severely hypo and had pretty severe symptoms at the lowest point I was just passing out in the middle of the day. So this is not one of those cases, although I have no doubt there are some out there. I have read some cases among women who were put on levo when all their results were in range because that’s what the doctors advised would help them get pregnant for example.

I agree, I had the same impression when I saw the headline. Many people are asking questions about coming off thyroid meds and "healing" their thyroid glands back to health. They are probably more than willing to follow the OP´s approach...which would be a bad idea with primary hypothyroidism including end stage Hashimoto´s. Most of us will have to find a drug/combination of drugs and dosage that result in symptom-relief without either hypo or hyper symptoms. That is a much more realistic approach than trying to go off thyroid meds altogether IMO.

I find it quite fascinating! Thank you for sharing your unique experience. I have recently come off my levo, but I'm suffering and aware things are likely to get worse, but for now It's a case of which evil i can live with. I find the different approaches to medicine in the former Eastern block countries and also traditional folk medicine practiced all over the world interesting.

It’s a pretty scary thing to be coming off of it and once again I need to reiterate that I did not come off cold turkey. I know there are people that do that and are fine, but that was not the case for me. It was a very gradual reduction of the dose I was taking over about a year and a half. I gradually made the gaps between taking the doses longer and longer and kept a diary of the doses as well as my symptoms. When I had ‘hyper’ symptoms, I increased the gap between the pills and when I had ‘hypo’ symptoms I would take steps to rest more and also reduce the gap between pills. That is, in a nutshell, how I weaned. I also tested my levels as I went. I did this as a combination of private testing and what was available through my GP in London. What was interesting is that period after stopping completely. After about 2/3 weeks I noticed the reduction in anxiety and air hunger. I also found my heart didn’t race when going for a walk. It also seems that taking levo masked/interfered with the orthostoic hypotension I was having. This became more pronounced after about a month/month and a half of being on levo. I’m really grateful to the doctor that spotted that this is what was happening to me and advised on how to improve this (turned out to be relatively easy). After I fixed that it has been a reasonably smooth recovery and adjustment. I would say that I’m more conscious that I can’t overdo things, like working too long or being out and about for a very long period of time. I used to work very long hours, which my body just kind of says no to now. If I don’t sleep well (two small kids) I also feel it a lot more than before having thyroid issues. But overall I’m grateful that I took the path that I did as I’m now feeling more in balance with myself and not having the awful side effects of the levo.

What I’m trying to say is - be careful and take the meds if you need them and if you feel unwell. It’s a very gradual process of recovery and it can be done. But do it gently and absolutely listen to your body at all times.

I know you're not advocating anything. For me it was a deliberate choice and I gradually weaned myself off it over a period of 2 months. I had saved funds to go private Endo but lost my job at the beginning of lockdown, and most of it is now gone. I had tried before to abruptly stop in the past and felt like I was going to die so did it gradually this time.

I have amended this post as not wanting to be too negative but I am not afraid. I was more afraid of a future feeling like the living dead.

Alanna, you need to be careful. I know the side effects can be hell, I absolutely emphasize, but if you are feeling weak, beyond resting as much as absolutely possible, do take the pills if your body is struggling with hypo symptoms, I'm sure you know what they feel like. If you are testing alongside, always check out your t4 and t3 to check that it is adequate. If you are low, take the pills, experiment with the dose to see what works, remembering that half life of levo is between 5-10 days depending on how quickly your body uses it. I was starting with 100/75 a day, then i intoroduced days of not taking it, then i was down to 50 every day, every third day after another month or so, etc... If I felt weak I made the gaps between pills shorter. Don't suffer if you are weak, I know the side effects are tough but so are the effects of not having enough thyroid hormones.

I simply don't have a life. It had shrink to nothing. I had lost friends from being too tired to take phonecalls. I was diagnosed fibromyalgia and was spending weeks indoors. To get you to understand what I dealing with, last week I got my levels tested - the doctor threw it in with a covid antibody test. Well it came back TSH very high. I phoned doctor, this is doctor no. 8 or so and one of the better ones. Doctor said you must go back on levo. I told him to look at my health records over the last 5 years and show me where the evidence is of levo doing anything for my health. His response?

"Well your TSH has been 'normal' (4.9) in the past, so in the absence of any evidence that you have any physical illness the cause must be psychosomatic in nature and I'll happily refer you back to Rheumatology so they can suggest some psychotherapies that can help."

That pretty much confirmed that I was done.

But levo is not going to make your thryoid recover, it is just hormone replacement for when you aren't making enough. Did you have your t4/t3 tested or only TSH all this time?

It has been TSH from the NHS all this time, yes. They do do T4 as well which I get told is in range. What I cannot get anyone to understand is that I develop symptoms of chronic fatigue along with some very unpleasant reactions when taking it. I feel worse not better the more I take.

Alanna, 4.9 is not normal at all especially if you were on Levo! A normal TSH for a person on Levo is completely different from a normal TSH for a healthy person. If you never managed to get your TSH under 2, then you can't know how well levo works for you.

that is only true for someone of full hormone replacement. There are degrees of variation for partial replacement.

I'm sorry but that's just not true.

when your thryoid is producing hormones, it is stimulated by the autonomic nervous system and by the hypothalamus. The degree of stimulation is determined by the amount of energy the body needs to burn and therefore the amount of t4/t3 combination that is needed. In people who have been taking levo for a long time, their thyroid gradually reduces in size and eventually makes little or no hormones at all. There is therefore no stimulation from the hypothalamus and TSH verges towards zero. For those on partial thyroid replacement therapy there is still stimulation of the gland, and there is absolutely no reason why it should be "below 2". Why 2? why not 2,5 or 1,5? Also looking at TSH in isolation, without considering if t4 and t3 are adequate in any given TSH level and then blindly adding more t4 in the form of levo to "get TSH below 2" is just a recipe for overmedication and all the consequences that go with that.

Almost nothing of what you are claiming is based on scientific evidence, so I feel like this conversation has become unproductive.

You engaged in this conversation with someone who has outright stated that she has followed a different path to recovery than the one which was offered by mainstream medicine and it’s protocols. I think a conversation about those protocols should be had with others who subscribe to and use them.

I think it is really important to point out that Alanna *seems* to have never followed what evidence-based medicine would prescribe in their situation!

Disclaimer: I am saying *seems* because I don't know the specifics of the situation and I am not a medical professional. However, Alanna, I would be very concerned by a doctor who considers a TSH of 4.9 to be normal especially if hypo symptoms persist. That's all I have to say.

Sorry cross post. He is not the only doctor to have told me that a TSH of 4.9 is fine. Actually I have seen several who think a TSH under 10 doesn't necessarily require intervention and one who told me any lower might mean I have a heart attack!

I may actually have the print out from when it was 4.9 with the words (from the original doctor) 'no further action necessary' It seems anything mid to below 5 is, from my anecdotal experience with a range of doctors, considered success. Should you still be suffering it is now in your head.

I am tired of talking and trying to figure it out on my own. Its been exhausting. Until I can afford to get better help I need to consider my mental well being at this point.

Thanks, yes I read this a lot, but everytime I ever tried to raise my dosage even by 25mg my pain, fatigue, energy crashes would get worse. I feel like I can't win. I think this why I've kind of mentally given up.

I'm sorry to hear that Alanna. It sounds really tough. If you can afford it and you haven't already done this I would recommend getting the DIO2 dna test.

I will do that, thanks for your advice.

My mum also managed to wean herself off of her thyroid medication, and her results did stay in range (I don't know where in range) for a few years. Unfortunately she did slide back into hypo eventually, as I think most do. I know she held off reintroducing medication for as long as possible, but she eventually brought it back in around 6 months before she passed away (which I suspect her under-treated thyroid issues contributed to).

I hope you'll have a long healthy time ahead, but it's important for you to keep getting tested and that you don't fight levo if you do need to bring it back again.

I’m the first to say that you should take the hormones if you aren’t well. They are and were life saving for me also.

You certainly got a reaction!

Keep up the good work x

Oh I wish I could come off this awful Levo since I've been on it 5years now up to a 100 to 125 alternate now n I felt worse than I started came off it for 8 weeks in 2016 I felt so much better but it didnt last long even now with my vitamins n thyroid results in good place I'm worse than ever hair falling out more skin dry no real energy only thing is I'm up n not sleeping in the day or m naps anymore I get jobs done but it's all an effort I'm not anywhere like I was upped my b12 injections last year self inject but i cant understand why i still feel like this Oh to have just a bit of my up n about life back but I dont feel Levo is doing me any good I'm just ticking along Anyway I'm happy to hear being able to stop it has worked for you... I hope it continues for you

Thats a really high dose of levo. Did you have your thyroid removed?

No I hvt I just felt very unwell few years back took gp a year to test b12 thyroid etc turns out high antibodies n Subclinical underactive put on this awful Levo never felt myself since I think the B12 was a big issue n having Pernicious Anemia so I self inject now but I honestly dont feel this Levo has or is doing me any good felt this way for long time but stopping it isnt an option I just wish the Endo's n Doctor's knew anything they dont.. This site is very helpful at least there are some very knowledgeable people on here ones that have lived with it all. I didnt even know what Hashi's was till I read on here but going back to you I do hope you stay fit n well I miss myself how I was age just a number to me

so did you have low t4/t3 when you were put on levo? why are you on such a high dose?

I had rising tsh only 9. at the time but low T3 t4

5 years ago this was I started on 25 then 50 then 75 now 100 to 125

and were the doses increased based only on TSH readings, without taking into account t4 and t3?

Well the Gp did the first 2 increases then I said I'm not feeling any better tested Tsh n T4 the Endo tested All 3 including T3 tpo antibodies test ever since Endo took over suppressed tsh now top of range t4 near top range t3 so he upped it to alternate 100 to 125 definitely not hyper that's for sure never have been

i'm surprised that you consider 100 -125 to be very high dose . I believe from my reading and personal experience that it's quite a common dose, even for people who still have a thyroid.

Ive still got a thyroid and have been on between 150-112 mcg in the last 20 yrs. The amount needed seems to be reducing since menopause.

it is normal for someone who has been on levo for 20 years. It isnt a normal newly diagnosed dose.

I would disagree with you on that point. For example , I went up to 150mcg from diagnosis of autoimmune hypo in 50 mcg increments over about 8 months, and then stayed on roughly that dose for about 15yrs with a few small adjustments.

I agree that 150 might be a bit higher than most need, but i don't think 100 ish is unusual as newly diagnosed dose (after initial gradual titration upwards obviously, which is usually done nowadays as 25mcg increments with re test after 6/8 weeks)

This is the usual way of dosing Levo as far as i know. I'm not saying it's the best way to do it, just that it's not unusually high.

It may not be unusual, but it is high =) a person without a thyroid tends to be on a similar daily dose.

Usually a person without a thyroid needs both T4 and T3 or NDT to feel well.

T3 is not always available to those without a thyroid. So in cases where only levo is used a ‘normal’ dose will be around 100mcg a day -/+.

Oh yes I know that but it should be available because a lot people without a thyroid do require both. There are some members on here who take NDT because of this. Just to add I don't think there is a normal dose because everyone is different and require a different amount to feel well.

Many of us are working on the theory that you can't top-up thyroid hormones , you have to replace fully if you are replacing at all.

Interesting. I believe its possible. Body has the ability to heal and regenerate and I think we should keep our minds open and flexible and not to get dogmatic and think we have all the answers. Do you know anything about red light therapy? I believe there were some studies done in Russia with great results. If I remember correctly some people got off thyroid meds completely and some reduced their dose.

I’ve had the LLLT done in Russia and have written about it. It was disastrous, and I do not recommend anyone to do it. But it was ironically trying to find the answers to what happened that I actually found out the answer to how to maximise conditions for healing. All the laser does is significantly stimulate the nervous system which in turn forces the thyroid to make more hormones, the opposite of what you want for the thyroid to heal. Hypothyroid patients don’t actually make less hormones, they make very high amounts of hormones over a prolonged period of time, as a result of some form of stress on the body. I mean stress in the wide sense - illness, pregnancy, adverse living conditions, as well as possibly significant psychological stress, without adequate time for rest and repair. The increased stimulation of the thyroid can be seen on an ultrasound in the form of increased and faster blood flow which is taking away hormones at a faster pace. This high level of stimulation over a long period of tome leads to the exhaustion and damage of the follicular cells that make the hormones, which is why you see the diffused tissue damage in hypothyroid patients. The tissue repair in the thyroid is a continuous process, it happens all the time, but if the pace of tissue death is faster than the body is able to regenerate then you will get a state where the thyroid is no longer able to keep up with the same level of hormones production as is required by the body. So to aid the thyroid in healing you need to a)reduce its stimulation by the central and peripheral nervous system, by way of resting, sleeping, staying warm, reducing stress, etc, everything that reduces the body’s need for energy expenditure (the only process in the body in which thyroid hormones are used is energy release), and b) maximising conditions for tissue repair, adequate nutrients including iodine and selenium , adequate oxygen (including reducing iron deficiencies), and time. Treatment of thyroid issues can be done through lifestyle changes. Chances are better in newly diagnosed and younger people and those who haven’t been on very high doses of levo over a long period of time as this eventually leads to the reduction of thyroid volume, so it’s a much more difficult process to reverse then.

Thank you. Interesting info. I didnt realize llt and red light is the same thing. I have goiter and nodules and levo shrinks it significantly. I like iodine. When I take it my cellulite is gone. How much iodine did you take? I take nascent 400mcg per drop.

This is a fascinating thread. I was sent by my ccg to an nhs professor last year who thinks I should be off levo and t3! Cost cutting exercise as my t3 had been initially prescribed privately. He suggests I be Weaned off so that the thyroid “wakes up” I have antibodies so there is no doubt I have hashimotos. He has had many many patients recover and not on any meds!I have resisted so far as scared - I never feel brilliant but felt worse when on no meds.So there are uk nhs professors advocating that some people’s thyroids can recover.

Thanks so much for the feedback! I would love to know the name if you wouldn’t mind sharing the contact by PM! At the moment I can’t find anyone in the UK that is at the very least questioning some of the dogma.

The thyroid doesn’t so much as ‘wake up’ as just heals, but taking levo can interfere with this. It is known, for example, that patients that take levo over a long period of time have the volume of their thyroid shrink. This is somehow seen as not being a problem since this is a way of ‘managing’ the problem by completely eradicating endogenous production of hormones in favour of complete hormone replacement therapy. This is why some people, like tattybogle, above are talking about many people working on the idea that it’s all or nothing. Because very very few doctors know what to do in terms of facilitating the thyroid to heal most are just killing the thyroid with levo so that they can then ‘control’ the amount of hormones better with externally administered hormones. The same is done with hyperthyroidism but even more crudely with radioactive iodine. It’s a pretty barbaric way of managing the disease all round.

Levothyroxine does not kill the thyroid it replaces the thyroxine that it is no longer making. I am pleased yours has "healed" but others are not like you. I am not taking anything at the moment and I am in remission but my multinodular goiter will never heal imho. I am glad you are feeling well but don't be surprised if eventually you will need treatment again. My last remission lasted 4 years and I am now on my second but this won't last forever.

Levothyroxine use over the long term reduces the volume of the thyroid. As this is the tissue that produces the hormones it therefore follows that the capacity of the thyroid to make hormones is reduced as a result of taking levothyroxine.

watermark.silverchair.com/j...

This is something that interests me, but have not found a definitive answer to.

Is it the taking of exogenous thyroid hormone that causes the thyroid gland to shrink over time , or is it the autoimmune disease attacking it bit by bit over years that shrinks it?

I recently read something stating that thyroids without autoimmune disease don't shrink , but i can't think where i read it now.

I suppose there are not many observations done to find out, since most hypothyroidism is Autoimmune anyway and the NHS rarely do ultrasounds more than once if they ever do one at all. I wish i knew if i still had any thyroid left after 20 yrs on Levo.

The idea that if i had worked harder to find another solution to improving thyroid function, i may not have needed Levo, has always played on my mind..... but i chose to go with NHS treatment because to be honest 20 yrs ago i wanted a quick fix and didn't have the self discipline to follow all the nutritional lifestyle advice that alternative practitioners suggested.

Also, in my defence, i'd become wary of private medicine since realising that all the osteopaths i saw had a Porsche and a Grand House , and were more than happy to see me every year forever , but apparently unwilling or unable to teach me any decent physiotherapy exercises which were what eventually helped my neck troubles. So i came to the conclusion they were just keeping a regular income for themselves from client's who could afford to pay for the attention, (i couldn't )

Private medicine in the UK is not great, and very expensive. I'm lucky to get medical insurance with my employer in London, but I have not found that the private clinicians are any better than what you get from the NHS. Indeed many of them work for the NHS alongside their private practice. I actually have a lot of time and respect for the HNS but when it comes to innovation in medicine, it takes a very very long time to seep through. Indeed it can be argued that it should take a long time to ensure you have the right checks and balances to ensure safety of the offered treatments. But as the bureaucratic machine slowly churns, patients are living their lives and often don't have time to wait. One of the reasons places with a more fluid and competitive helathcare market can sometimes offer better solutions more quickly.

And then there is price. I am not advocating Russia as a centre of healthcare excellence by a long shot, I just happen to spend a lot of time there. But diagnostics there are a lot more affordable. A standard set of thyroid blood tests for example are under £10 and antibody tests maybe another £15-20 at a diagnostic centre that I use, and that's among the more expensive ones in the market. I get ultrasounds done by the doctor who has been very helpful to me. He is more expensive, but absolutely the best I have seen, and runs a specialist thyroid clinic, he literally doesn't treat any other conditions at the moment and is solely focused on thyroid patients. After the initial visit, which cost about £250 and lasted three hours with a very detailed illness history discussion, overview of the entirety of all the blood tests and Utrasounds I have ever done, another very detailed ultrasound and other diagnostics, I have paid between £20-50 in follow up visits, depending on the diagnostics and treatment. Last time he didn't charge me at all. Comparing that to a 20 minute visit with the private endo in London which set me back £350, the output of which was a letter saying that I have hypothyroidism, with incorrect test results copied in was an eye opener.

I also used a private chiropractor in Spain, which charged very reasonable fees, around 35 euros a visit I think, and really helped with dizziness and vertigo. In the UK in the north of England, I paid twice that for not very much at all.

as regards autoimmunity - I would put the question differently - where and by whom has it been proven that autoantobodies are destroying our organs? We have all seen that there is a "normal" range in antibody blood tests. Why do we all have antibodies, in a greater or smaller extent at some point, but only some are apparently damaged by them?

As this is a cornerpost of the thyroid treatments, there must be tonnes of proof on this.

Yes, i tend to agree , that there is no proof that TPOab's and TGab's are concrete evidence of anything, (other than an increased likelyhood of thyroid problems showing up at some point.) They fluctuate, some Graves patients also have TPOab's, some Hashimotos patients have thyroid exams that show hashimoto's destuction in the thyroid tissues but no TPOabs, and like you say , who came up with the 'normal ' range , based on what i wonder ?

But without much wider and more frequent examination of actual thyroid glands rather than just looking at blood tests, i suppose there is a lot that can't be proved. No doctor has ever even touched my throat to feel my thyroid gland. In 20 yrs ,

I don't think there are any 'corner posts' to UK thyroid treatment, that's why it's such a shaky building..... there is just one central stick 'TSH' so it's a Bell Tent really, hopefully when the TSH stick is kicked over the whole shambles will fall down.

I wouldn't be surprised if there is no evidence of the Auto immune process causing thyroid destruction. It seems the answer is always 'we don't know how that works' (and we're not interested in finding out )

The Prices in Russia seem very reasonable, i could just about afford them.... How much is a cheap flight Russia , and is there a cheap Russian version of T3 ? Only joking :)

there are different versions of hypothroidism. the problem is that its all blended into one term. which doesnt help anyone understand the cause/effects.

post-natal hypothyroidism is temporary and should not be umbrella'd under the same group as those that have had thyroid surgurys or congenital(had it all life) hypothyroidism

yes if you developed hypothyroidism purely due to pregnancy. then yes your levels can go back to normal by themselves.

for the rest of us with actual thyroid gland malfunction/damage/loss. this is not something that can go away by changing lifestyle habits.

first of all as regards my case, I developed hypothyroidism after pregnancy but it did not resolve ‘by itself’ after a year or after two. Indeed I was told by most doctors that I would be on hormone replacement for life.

Are you able to explain how post partum thyroditis is different and why it is ‘temporary’ and all other cases are not? Thyroid removal is a whole different category, this is surgical removal of an organ, not a chronic condition.

im just saying i know of 8 women that were (wrongly) diagnosed as hyptothyroid and told it was now life long. where the only causality was pregnancy. they all managed to recover. party of pregnancy is hormonal changes. but some GP see a low thyroid hormone and just brand it as hypothyroidism and then just follow the same guideance of chronic hypothyroidism. not realising there are multiple causes and multiple prognoses and multiple effects and lengths of suffering.

its as if all they do is check TSH and just say 'ok your screwed for life, take this single pill, its all we got, and live with any bad side issues'

doctors these days dont treat people individually nor do they go to the greater lengths to understand the underlying cause.

i was born with it. technically im a 'cretin' which is worse level of it. but even after 37 years doctors stil wont even bother to see if its auto-immune. gland malfunction. genetic. they just umbrella it as hypo and just treat it with same stuff that everyone else is.. saying its a waste of money finding out the cause because it wont affect the treatment.

but anyways yes pregnant women will have hormonal changes and part of post-natal changes can be thyroid. but this is not the same hypo as those with actual malfunctioning thyroids. but doctors only check TSH so wont know the difference. and just umbrella pregnant women into same category as those that had it for life.

some research was done that the lack of hormone in the mothers blood was simply becasue it was being lactated out to the milk. where the sign of actual thyroid malfunction would be the lack of milk being produced. thus proper review of new mothers should be done. not just a TSH test

also menapuase can show varying TSH and be wrongly classed as then chronic(rest of life) thyroid issues. but getting hormone balance right of other hormones sorts out menapausal womens thyroid levels.

simple answer is. there are different types of hypothyroidism and more research needs to be done to declassify them as singular. and reclassify them as multiple different diagnoses/treatment plans

You are absolutely spot on about testing TSH, prescribing levo and sending people on their way. This seems to be the approach with a so so many doctors.

The rise and fall of TSH is not the be all and end all of determining thyroid problems. It isnt a hormone produced by the thyroid - t3 and t4 are. The obsession with pidgeonholing these states into "daiagnoses" though misses the point that these states are on a continuum, and not binary. The best classification I have seen has about 16 categories of hypo and hyper thyroidism, but which acknowledges these states as a continuum.

5 years ago i went to an endo. who reviewed my records. and then.. stupidl asked how long ago i was diagnosed. it seems computerised medical records do not have enough categories. i had it from birth and in the sever category which in the 1980's was cretinism. but now its just 'hypothyroidism'

other things i learned is that just like whats being learned about covid. peoples cell receptors are different. some people are very sensative to absorbing the chemicals/particles/molecules the receptors are designed for. and some are not. this is why covid affects some and not others. so some hypo's are not due to the thyroid gland. but the receptors of not only the bodies cells not absorbing hormones(diabeties is another example) but also the receptors in the brain that absorb hormones and then send out different hormones.

TSH is not a thyroid hormone but a brain hormone as a response to chemical messages in the brain thinking you are not making thyroid hormones. but the actual issue could be the receptors malfunctioning. but GP wont dare go into refering people for proper examinations of all causes to then come to a proper diagnoses to then offer proper treatment

Then there is clearly no need to click any links, or read anymore. I don't know what you or any other person could or should do. I am simply telling my story.

your advice may be very well helpful to new mothers. and it can add much help to them. but to brush it as a overall advice for all hypo's is a stretch.

what should be advised to new mothers is there is a good chance its only temporary and they should do something about it. and not be just handed a prescription for life due to only a TSH test.

but remember to separate that advice from other hypo causes for other reasons.

EG a simple title change to 'getting off levo is possible.. if hypo caused by pregnancy' then makes it more apparent to who it can help most

I have already suggested that mikey_is_alive I don't think she is listening.

I thought you aren't reading my posts anymore =)

I was posting to Mikey😀

=)))

But that is not accurate, this does not apply just to new mothers. It is unlikely to apply to people who have been on levo for many years and it is deffinitely unlikely to apply to people with a thyrodectomy, although those with patrial thyrodectomies do see some re-growth of thyroid tissue.

it is well known that the thyroid goes haywire and readjusts after pregnancy, the doctor who put you on it should have know this. Sounds like despite your blood results, you should never have been on it, or only for a short time.

1) define "haywire", 2) explain why it goes "haywire" in some women and not others, in some pregnancies in the same woman but not others, why some recover and others do not 3) I have been to see a - 3 different doctors at my local GP practice, b - a private endocrinologist in London, who used to head up the UK thyroid association, c - a private endocrinologist in Spain and d - three different endocrinologists and two sonographers in Russia. Which one of them "should have known that the thyroid goes 'haywire' after pregnancy" and didn't?

It is incredibly easy to throw criticism at people we don't know on the internet. i don't know what it "sounds like" to you, but I have no doubt that I was very severely hypothyroid and was rightly put on levo when I needed it. The point is, that all but one of the above doctors was adamant that I would need hormone replacement for life. Somewhere their assumptions were incorrect.

Very interesting post (and entertaining lol!)...thanks for sharing !I very rarely come on here and don’t know why I felt compelled to pop on just now but this post certainly caught my attention!...Firstly well done you for going down a route that has worked for you and with careful monitoring may be able to stay on this path .I have considered doing the same .I was diagnosed hypo/hashi 10 years ago or thereabouts and have yet to feel well on any thyroid hormone replacements even though all my vits etc are good and my bloodwork is excellent!I am currently on levo only after running out of Thai ndt after seeing the drama in getting it nowadays and the cost etc since I had last purchased a few years ago .My best bloodwork was on a combo of levo and ndt .I just feel like seeing how I would be with without any thyroid hormone replacements .When I look back my diagnoses was at similar time to peri menopause and then I followed with early (ish)menopause at 46 (3 yr after diagnosis)....I wonder if this is why my thyroid levels were off ....but also a massive spanner in the works I believe in hindsight were breast implants......I am in Facebook breast implant healing groups and so many women on there were diagnosed hypo and hashi and once they removed their implants they came off meds and their thyroid levels are fine and antibodies reduced...I’ve seen it over and over again although I’ve not seen how that pans out long term say after a year or so in the future ...but so many other conditions that were diagnosed have also rectified by the removal of breast implants....they cause so much upset in the body and especially the endocrine system....literally half of the women in these groups have thyroid problems and one of the groups have over a hundred thousand women in it !...These are women of all age groups too !I removed mine over a year ago now and I wonder now a few years post menopause and without implants (especially as they were badly ruptured)whether I could live a life without replacing thyroid hormones....I know that 10 years have passed since first being diagnosed and it may not be possible but one thing is for sure that since removing my implants I have (before the ndt drama)been able to reduce my ndt twice .I tested my levels and t3/t4 were both over range so I was over replaced then reduced again and was still over replaced so reduced again .Im now wondering whether to give it a go and see what I’m like without anything apart from keeping vits at good levels .....I appreciate it’s an experiment that may not work out for me but I feel rubbish anyway so may just have a try ....I wish you all the very best of good luck and well wishes .

Thanks for sharing your story. Thyroid problems are so common now among women, it seems like every other woman I talk to now knows someone close who has a thyroid problem. In my family I am third among close relatives. Any significant physical stress on the body will lead to greater stimulation of the thyroid - be this surgery, illness, pregnancy, as well as significant psychological stress where sympathetic nervous stimulation dominates for a prolonged period of time. I’m no expert in implants, I’m sure there is a lot of safety testing done on them, but having foreign objects inserted into the body, by way of major surgery is undoubtedly going to put the body through stress. And that’s without the complication of rupturing. There is the scar tissue to heal, blood loss to replace, and in the case of leakage presumably a process of eliminating the leaked materials through the liver and kidneys. From a physical point of view, all this is energetically demanding. The body is expending all this additional energy to heal on top of your other day to day activities. So, of course it follows that the thyroid will be more significantly stimulated, there will be increased blood flow to the thyroid, hormones will be taken away at a faster pace, the thyroid follicles will be significantly stressed. After a prolonged period of time in this state, the thyroid may no longer be able to keep up with the demand placed on it and you will begin to feel symptoms of hypothyroidism.

But just as your body heals from everything you have described, so does the thyroid. It’s a slow process though, just as with other body parts. It would be a good idea to have a thorough thyroid ultrasound done to look at the structure of the organ and how much healthy tissue is there, to see the level of vascularisation to assess how hard the thyroid is working, and if you chose to try experimenting with reducing your dose to keep an eye on getting the building blocks for repair in - sufficient nutrients, particularly iron, iodine and selenium and above all a lot of rest, absolutely as much as you can. Our cells are rebuilding all the time, but we can create conditions for this process to be optimal. And rest, sleep and relaxation is when our nervous system is parasympathetic dominant and those reparative processes are maximised.

Wishing you all the very best too =)

From what I have learned over the last 20 months is just how bad implants really are .....the body is trying to reject them from day one and fires up the immune system...there are 35 toxic chemicals in them ..basically matress foam as well as mould and biofilms...the things I have seen and learned would knock you sick but of course all covered up by multi billion pound industry ...absolutely criminal and so many of the women suffering are mastectomy patients .They actually cause autoimmune conditions for one but then so many other conditions from hairloss /skin problems to mental health issues and anxiety ..the list is endless but all these women including have same issues ....some women if they’ve not had them too long a time literally have overnight recoveries ..it’s incredible!Of course the medical profession don’t really believe us or listen (like with thyroid !) and call us all crazy but there’s that many of us we can’t be wrong ...through the fight of one of the groups I’m in implants now at least have to have a black box warning so at least a start !All of us have filled in yellow cards too .Thankyou so much for listening and your reply ...you’ve made some very good points on this thread and I’m interested to see how you go and what levels your t3/t4 are over the coming months x

Lora7again
Lora7again in reply to Lozzer66

I actually was given the Mirena coil a year before my thyroid problems started and a lot of women in the US think it has caused their thyroid disease. There are few lawsuits against Merck because of it causing harm to women. I didn't really want it but the NHS push this on women for contraception and erratic bleeding which I was experiencing when I was 47.

Lozzer66
Lozzer66 in reply to Lora7again

Yes ..I have also heard this many times before and seen documentaries on this issue ...it’s criminal...is it any wonder we have thyroid issues when the immune system is on a mission to reject the ‘offender’...just look how it’s pushes a splinter out .The women who I am in touch with say their thyroid issues started after breast implants...some literally within the first few months .I noticed a change in health after 4 years or so and that could of been my thyroid but didn’t go to the doctors until a few years later and was diagnosed straight away .

Lora7again
Lora7again in reply to Lozzer66

I had the Mirena for about 15 months and I kept going back to my GP asking them to remove it. When it was eventually removed my cervix was very inflamed and I had to be fast tracked for a biopsy because my GP thought it was cancer. Shortly afterwards I started getting symptoms and I do wonder if the Mirena started all this.

It's good to have you with us again Lora7again =)

I was interested in the breast implants not the healing of your thyroid which I know is not always possible for everyone. It is also very dangerous to stop Levothyroxine if you have been taking it for years.

ok! I was just checking in =))

Lozzer66
Lozzer66 in reply to Lora7again

Truely shocking...we know our own bodies ....both my daughters had problems with coils ...one being a mirena and the other hormone free .....both of them felt better after removing them .

Lora7again
Lora7again in reply to Lozzer66

Yes, the artificial progesterone the Mirena contains is actually a steroid and has lots of nasty side effects and it is called Levonorgestrel. I started to get facial hair when I had the Mirena as well as acne and I felt very depressed. My GP kept telling me to let it settle in ... I do wonder why they are pushing this coil? Having said that my friend has had 2 and thinks they are wonderful because it stopped her periods.

I know you aren't clicking on my links, but I highly recommend these two books on the menstrual cycle and contraception. Both incredibly illuminating, and again highlighting the bias against normal female physiology, and what happens when we mess with it.

amazon.co.uk/Fifth-Vital-Si...

amazon.co.uk/This-Your-Brai...

Or, you know, also available in bookshops:

- How the Pill Changes Everything: Your Brain on Birth Control Paperback – 10 Oct. 2019 by Sarah E Hill (Author)

- The Fifth Vital Sign: Master Your Cycles & Optimize Your Fertility Paperback – Illustrated, 16 Jan. 2019 by Lisa Hendrickson-Jack (Author), Lara Briden ND (Foreword)

I am 60 now and no longer have periods I went through the menopause at 55. I have a daughter in her 30s and I have told her not to use the pill because I was on it for over 30 years from the age of 15 and only stopped it to get pregnant with my 2 children. Thanks for the links.

No problem. Anytime =)

Lora7again
Lora7again in reply to Lozzer66

Did you manage to obtain some Thyroid S? I have actually frozen mine to use if I need it later on.

Lozzer66
Lozzer66 in reply to Lora7again

I do have some out of date ones (a kind lady gifted some)....I was pointed to someone who was a seller but it was very expensive in comparison to what I had paid before and I’m worried about the price continuing to rise and it’s availability so I decided to try levothyroxine alone without ndt to see how I go with it reasoning now my vitamins are good and implants are gone I may do better but it’s an experiment and will just see how I go ...not feeling amazing at the mo but then again wasn’t that amazing with my levo/ndt combo with excellent bloodwork either lol ....I think I’ve still a lot of detoxing to do from my ruptures 😉

Well done you for advocating your position! You are so right, women's health issues have been dismissed for literally centuries, because we are "hormonal" or "emotional" or "hysterical". The poster above, who mentioned "hormones" going "haywire" in pregnancy just really reminded me of the lack of understanding of what normal female physiology is supposed to look like. There was an excellent chapter in a book I read recently called "Invisible Women" by Caroline Creado Perez about how a female body has been viewed in essence like a malfunctioning male body by the male dominated medical profession and how the impact of many medications are simply not measured on women, because we have a menstrual cycle and react differently to medication depending on where we are in our cycles, and this is too expensive to take into account. I was absolutely astounded when I became a mum for the first time how ill informed we all are as a society, including us, women about to become mums, about what a physiological labour is supposed to be like, how breastfeeding works, the impact of the "cascade of interventions" at birth on birth outcomes, the normal behaviours of infants, their feeding and sleeping patterns, what happens to menstruation after birth and following breastfeeding. I became the biggest fan of independent midwives, who oftentimes advocate on behalf of women about improving the conditions of women in labour and their human rights, but through tremendous pushback from the medical establishment.

So well done you! Well done for listening to your body. For not taking it lying down and pressing on and continuing to speak out about what's right. We might have small voices indvidually, but together we have a chance to make changes. Incremental, small, gradual changes oftentimes, but changes nonetheless!

...malfunctioning male body lol !..funny but not funny ....she’s certainly hit the nail on the head .We all have to take control of our own bodies don’t we and it’s such an individual journey....we are all so different in what works for each of us as individuals ...something the medical profession in general do not do and just wish to treat us in the ‘one size fits all’ way ...I’ll not rest till I find what works for me ;)

🙏🙏🙏

hello all i can share my story which will shock some of you who dont believe thyroid heals itself...im living proof it does.i was hyperthyroid and in us given radioactive iodone treatment .administret end of life drug 75which i never took since year 2000. i was doing just fine without it .i was taking somw homeopathy for different things but never something e thyroid related.my homeopath said i have no thyroid disease .ok than i got itchy skin that would rupture in winter and i went to test my blood first time afterr soo many years and i was hypo again perscription of 75.again choose to try other things used lugols iodone two drops on skin to absorb underelbow。felt excellent..did this for a year..stoped lugols iodone so i can see whats gona happen and gained extreme lot of weights. than had some stressful situation and had muscle pains and my back hurt ..out of fear test thyroi again and got 100.for one year been on this medicine for the first time..i m not feeling well on it .its makin me feel like my head is bloated and brain is going ro explode 。i today didnt take my medicine .i m teying to cut it of because i know its harmful to me.i am just wondeing if i can cut it plain out or will i have some sideeffects ?i run a lot train a lot as i mpro athlete in my past.doctors said long ago i cant do streinoss excercise but i did no problem ...doctors dont care to look in for a deeper cause of our problem they dont even do their research .i told my doctor that i developed insomnia from levtyro he said no way ...i am pisssed because they pain out avoid the truth and our reality.its soo mean and than they are not kept accountablr when they missdiagnoze patients ...

I liked your post - it gives me hope! (My story is on my bio)

I was intrigued by 'I no longer have "air hunger"?

Yeah, you know that feeling like you can’t get enough air in when you breathe? That was one of the first things I noticed coming off levo. I monitor myself with a wearable device, and it has shown that my ‘number of breaths per minute’ when I sleep has gone up from 15ish per minute to over 17. I’m not sure about the mechanism of this and how thyroid hormones impact it, but there is an actual measurable difference.

Blimey - I get that feeling when I exercise so kind of get what you mean, pleased you are doing good without Levo 👌

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