Taking Levo only as I have needed it - 5 months diary.

[ThyroidLadyLondon]

I have been taking levothyroxine as I have been needing it since about the start of this year. If I had hyper symptoms I lowered my dose. If I was feeling weak I increased my dose. I started keeping a diary of how much Levo I take daily since July this year. This is the result - in circles, starting with July. The result is an average of total amount of levo divided by days in the month.

I tended to take a 25 or a 50 or would cut a 75 pill in half.

In July I tried to get off levo and became hypo-symptomatic in about 3 weeks. I seem to react quite quickly to taking levo and significant dose changes take about 3-5 days to really get noticed.

Last year I was taking 75 or 100 daily. I first started taking Levo in about July 2017, which was 5 months after my second baby’s birth. My TSH was over 100 and I was below lab range for T4, when I started taking a dose of 50 going up to 75 and then 100. My TPO antibodies were 136 when first tested (normal >35).

The biggest impact on how much levo I need, in hindsight - has been presence or absence of significant stress and significant travel with children, which, unsurprisingly I find pretty stressful.

I eat a normal diet, with gluten and sugar and salt and alcohol and dairy and meat. We try to be healthy, but like any busy family with kids, there is the odd pizza and the like here and there.

My two supplements are magnesium (4-500mcgs a day) and a sea kelp jelly, rich in iodine. We have just started making kombucha at home and are fond of a kefir here and there, but not fanatical about it. I drink some caffeinated tea but coffee is an absolute no-no as I tend to get hyper symptoms within hours and feel very unwell.

I have already written before about trying to cut down excess physical activity and being quite strict about keeping and staying warm. I try to rest when I feel tired, which is always a battle with kids around, but I try to prioritise it.

I’m particularly excited to see a downward trend in the colder months, as I thought this would impact the need for levo a lot more than it has. So stress, particularly being alone with two small kids, and travel really seem to be the top triggers for me in particular.

Just sharing my experience.

[MichelleHarris]

Thats is interesting! There is a downward trend in your need for Thyroxine then. Thats good. I drove for a few hours the other day and felt very unwell and still am today. Maybe its the concentration required x

[ThyroidLadyLondon in reply to MichelleHarris]

For sure, anything that requires your nervous system to be on high alert is going to make you use up more thyroid hormones. Put your feet up and try to relax and it will soon pass!

[Lalatoot]

Please be careful if you choose to supplement with anything with iodine in it as thyroid lady does. What suits her may not suit all. It was iodine that tipped my thyroid over the edge and caused me a lot of problems.

[ThyroidLadyLondon in reply to Lalatoot]

Lalatoot, what happened to you?

[shaws Administrator in reply to ThyroidLadyLondon]

This quote is from the following link:-

If you are taking levothyroxine for hypothyroidism (underactive thyroid) or for a goitre (thyroid swelling) there is no need to take iodine supplements.

google.com/search?client=fi...

As thyroid antibodies are present in your blood you have an Autoimmune Thyroid Disease called hashimoto's, but treatment is the same as for hypothyroidism. Going gluten-free can help reduce the antibodies that attack the thyroid gland - they wax and wane.

Levo is usually taken when we get up with one full glass of water and wait an hour before eating. Some prefer a bedtime dose and make sure your stomach is empty if you do this method. You take thyroid hormones with one full glass of water and wait an hour before eating (if taking it in the daytime).

It is common for pregnancy to be the trigger for becoming hypothyroid.

I am not medically qualified but the aim is for us to be symptom-free, and have a TSH of around 1 or lower with FT4 and FT3 in the upper part of the ranges. The latter two are rarely tested.

When getting a blood test, is it at the very earliest possible, fasting (you can drink watr) and allow a gap of 24 hours between your last dose and the test and take it afterwards. This procedure allows your TSH to be at its highest as it can drop throughout the day and may make the difference between GP adjusting dose down when you need it to be optimum for you.

Also check B12, Vit D, iron, ferritin and folate. Everything has to be optimum.

[ThyroidLadyLondon in reply to shaws]

Thanks shaws. I have soooo many questions!

Is not needing to have iodine based on taking ANY levothyroxine or does it depend on the dose you take? The accompanying fact sheet says that iodine is important for the production of thyroid hormones and that the recommended daily value is higher for breastfeeding women (I breastfeed). What, the is excessive iodine intake? 220? 300? 2000? At what point and through what mechanism and at what quantity is excessive iodine intake dangerous?

I see iodine being thrown around like a hot potato by people who are meant to be experts, leading to many people with thyroid problems avoiding it altogether, even though there is excellent evidence that iodine is helpful in pregnancy, hypo and hyperthyroidism.

I suppose the argument may be - if your thyroid is not functioning at all and you have TOTAL hormonal replacement, then there is no need for your body to have the iodine required to synthesise thyroid hormones. But if, like many of us, we are taking a PARTIAL hormone replacement and our thyroid is still producing hormones, then surely we have a need for that iodine, as well as selenium, oxygen and other hormone building blocks.

[Lalatoot in reply to ThyroidLadyLondon]

The need or not to supplement with iodine solely depends on whether you are deficient in iodine or not. If you are not deficient in iodine then it may cause problems if you supplement as studies have demonstrated In countries where iodine has been added to table salt, the rates of autoimmune thyroid disease have risen. Increased iodine intake, especially in supplement form, can increase the autoimmune attack on the thyroid. Iodine reduces the activity of an enzyme called thyroid peroxidase (TPO). TPO is required for proper thyroid hormone production.

[Angel_of_the_North in reply to ThyroidLadyLondon]

Levothyroxine is "made of" iodine and when it is converted to T3, one iodine atom is stripped off for use elsewhere. If you are on the correct dose of thyroid hormones, you are unlikely to need extra iodine. Iodine (with the amino acid tyrosine) is used to make thyroid hormones but giving your body the raw materials only works if you have enough functioning thyroid tissue left to make use of them - most people with Hashis in the UK don't as you aren't usually diagnosed until a lot of the thyroid has been destroyed. It is possible to be iodine deficient, although unusual these days, and you can get a test to find out. Kelp and seaweed supplements can be problematic as the amounts of iodine vary and you don't know how much you are getting. However the extra minerals in seaweed can be good. If I was shown to be iodine deficient and needed to supplement, I'd probably take iodoral or Lugols iodine as I'd know what the dose was. Iodine used to be used as a treatment for an overactive thyroid

[ThyroidLadyLondon in reply to Angel_of_the_North]

There is nutritional information available in the sea kelp jelly I use, so I am happy to approximate what one spoonful contains, which is my daily dose when I remember to have it. And absolutely concur that you first test for sufficiency before taking supplements, in light of your current dietary status. My husband is allergic to fish, so we never have it at home and I am quite dairy light. Supplementing is the easiest way for me to ensure I get enough.

The iodine in the levothyroxine is not in that same form as iodine in food. I am no scientist but my assumption is that it is not used by the thyroid follicles in the same way, if the PRODUCT of the thyroid follicles is essentially what levothyroxine is.

You are right, of course, about the DEGREE of damage to the thyroid, this is pretty much never assessed in the UK as far as I can tell. My Russian specialist, with caution, gave me an approximation of my healthy thyroid tissue vs damaged tissue from a very thorough ultrasound. Healthy tissue shows up as a light grey, structurally uniform tissue, whereas damaged tissue shows up as dark grey tissue with diffused structural changes. It is an approximation, but much better than nothing. Even if this approximation has a big margin of error, the existing healthy tissue, in any event, needs thyroid hormone making materials, which includes iodine, selenium, oxygen, and so on.

In addition, keeping in mind the thyroid’s ability to regenerate frontiersin.org/articles/10...

means that we need to supply the body with the building materials for thyroid tissue repair to happen effectively, which additionally needs nutritional iodine.

There seems to be a lot of demonisation of iodine, whilst forgetting its necessity for healthy thyroid function. I feel like it’s one of those things that started off as a very very limited caution, for genuinely very high iodine exposure, that has become folklore, and people with thyroid disease now avoid it ‘just in case’ or because ‘I heard it somewhere that...’. rather than evaluating whether it should be reviewed and supplemented in their own case.

[ThyroidLadyLondon in reply to Angel_of_the_North]

As regards the prevalence of iodine deficiency, I'm actually hearing that iodine deficiency is incredibly widespread. I recently listened to a podcast with Dr David Brownstein MD, who said that 97% of the 6000 thyroid patients he tested were iodine deficient, mostly severely deficient, and furthermore this is the same picture he is seeing from his colleagues in Canada (fertilityfriday.com/episode....

I appreciate this is another continent, but I wonder how different the UK is going to be, based on our dietary profiles, farming practices, etc. Although I do suppose we are closer to the sea. It actually sounds like we should all be testing our iodine levels habitually as thyroid patients, and to supplement, if required.

[ThyroidLadyLondon in reply to Angel_of_the_North]

Actually, now that I have started reading into it, it seems that we DO have an iodine deficiency problem in the UK.

This is an excellent summary: independentnurse.co.uk/clin...

[RedApple Administrator in reply to ThyroidLadyLondon]

You might find this site useful ukiodine.org They state "It is very important that kelp and seaweed supplements are not taken as an iodine source. "

[ThyroidLadyLondon in reply to RedApple]

Yes, I read that. This stems from the difficulty of evaluating the dose. I don't take a large dose, and prefer to have a food source of iodine rather than pill form. We don't eat fish at home, because my husband has a severe allergy, and I am not a big dairy eater, so my other dietary sources of iodine are quite limited.

[RedApple Administrator in reply to ThyroidLadyLondon]

Did you see that they have some recordings of recent talks that you can listen to. ukiodine.org/latest-news/

In particlular “Iodine deficiency in the UK: who is at risk” ukiodine.org/news/iodine-de...

[ThyroidLadyLondon in reply to RedApple]

RedApple I didn’t, thank you! Will have a listen.

With all the talk about the apparent dangers of iodine, where is this coming from, source wise? Any ideas?

[shaws Administrator in reply to ThyroidLadyLondon]

Members can only say what they've found to be helpful for themselves. We are not medically qualified so we must 'listen' to our bodies to reach the optimum dose we personally need. I rarely get my thyroid hormones checked as there's no need because I feel well.

Nowadays doctors are fixated on numbers (except FT4 and FT3) and willy/nilly adjust doses to 'fit' us into a range when we need a TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges.

When you get to a dose which makes you feel you've normal health again, we'd be very reluctant to adjust dose down although some doctors (uninformed doctors) insist on reducing dose and patient becomes unwell again.

"In fact, for some people with abnormal thyroid glands, too much iodine can cause or worsen hypothyroidism.

Hypothyroidism can be safely and effectively treated with the synthetic thyroid hormone levothyroxine (Synthroid, Levothroid, others)."

mayoclinic.org/diseases-con...

The most important thyroid hormone is T3 (liothyronine) and it is this which has to enter our T3 receptor cells as it provides the energy that our body needs, especially heart and brain..

Also keep in mind I'm not medically qualified but those whom I consulted (and who I paid) who were supposed to be knowledgeable/qualified specialists/doctors were NOT. I am very thankful to a First when I was so very unwell before I, finally, diagnosed myself. thanks to him..

In fact I was discharged from the A&E after an 'overnight stay with the diagnosis 'probably viral with a high cholesterol'. Next day I got my own TSH test and it was 100, so despite consulting/paying 'experts' it was my own blood test that revealed what all of these professionals should know (a very basic condition) but who were wholly ignorant and I didn't get money refunded where I paid them for their 'expertise'.

[ThyroidLadyLondon in reply to shaws]

I’m not sure on who decided what the aim should be, but it seems to me that symptom free may not equate with the test ranges that you state. TSH can and does fluctuate as a result of signals regarding how much our body needs thyroid hormones, and the idea that it should stay in one place seems odd to me. Indeed the obsession with ‘managing down’ TSH blood test result will almost always lead to levo dosage increases. We know, for example, that TSH rises, without an increase in T3/t4 values following psychological stress.

ncbi.nlm.nih.gov/m/pubmed/3...

What if, for example, you are terrified of needles and hospitals and giving blood and your TSH spikes as you go for a blood test, but your thyroid hormones remain in range? In the overwhelming majority of instances, as I have heard, the doctor will indicate a levo dose increase is necessary to ‘lower TSH’.

We also know that the autonomic nervous system can independently stimulate the thyroid to make more thyroid hormone, without a rise in TSH, I posted about this research previously. Although I have not been able to find recent research about this on the DEGREE of influence on the nervous system, the notion of its influence is incredibly significant in my mind to be very cautious about placing TSH ‘management’ at the centre of any treatment action plan.

healthunlocked.com/thyroidu...

[Lalatoot in reply to ThyroidLadyLondon]

Tsh and Ft3 fluctuate on a cicardian rhythm which has been documented. Ft4 does not have such a marked fluctuation. There are papers written about these fluctuations if you wish to research.

[ThyroidLadyLondon in reply to Lalatoot]

Lalatoot, thanks for reminding me about that! Yes, I have seen that research. And it makes sense that we would have a circadian rhythm, as we have different levels of need for thyroid hormones during the physically active daytime and the sleeping state in the night time. Since we are using up the active t3 for activity during the day, it makes sense that this diminishes during the day and gets replenished during the night, when we are not needing to use it at the same rate. TSH is peaking in the night, and it stimulates the thyroid, which is primarily making the inactive t4, which will then get converted to t3 during the day again. Have you seen research on how this rhythm differs in people on partial or full thyroid replacement therapy?

[shaws Administrator in reply to ThyroidLadyLondon]

Once upon a time - before blood tests were introduced along with levothyroxine, we were diagnosed upon our symptoms alone, No blood tests, but were given a dose of 'natural dessicated thyroid hormones' which was slowly increased until symptoms resolved and we felt well. Before that we just died a horrible death.

[ThyroidLadyLondon in reply to shaws]

=) it is one way to go about it.

[foxglove in reply to shaws]

Hi, interested in this reply, I am thinking of changing from Levo to NDT, is it ok do you know to start on one 60mg tablet? or should I half it as bottle recommends starting dose as 30 mg. I am on 25mcg levo

[shaws Administrator in reply to ThyroidLadyLondon]

I'd think that symptoms are more important because when they're relieved you feel well again.

[ThyroidLadyLondon in reply to shaws]

Shaws that’s precisely the approach I’m taking with this. Taking a dose for a month or more to see if it makes a difference to my lab results doesn’t work for me, I see a difference in my symptoms in days. If I’m feeling hyper - it’s the wrong dose. I’m not going to stay on it for a month because the doctor has a protocol they have to follow. It’s my body - therefore my protocol.

Also, as many many of us point out - the labs can all be normal but we still feel like shit - what’s the point?

[shaws Administrator in reply to ThyroidLadyLondon]

Dr Lowe only took one blood test for the initial diagnosis and thereafter the concentration was on small increases in either NDT or T3, until patient's symptoms were all relieved. i.e. NDT for patients in general and T3 for 'thyroid hormone resistant' patients.

[ThyroidLadyLondon in reply to shaws]

I have heard many people taking about going gluten free helping them. I have tried this when I was first diagnosed and found it made little difference to my blood test results or my wellbeing. It mostly made me hungry and frustrated that I couldn’t eat what I wanted. As a nursing mum with a baby feeding around the clock I had a voracious appetite! Since eating a largely non-restrictive diet I have found changes in my need for thyroid medication to not be influenced by gluten at all. Indeed my antibody count reduces irrespective of it.

It may be there is more of an impact on people with a very poor diet as the starting point.

[Lalatoot in reply to ThyroidLadyLondon]

There is evidence that coeliac disease and thyroid problems are linked. This does not mean that all coeliacs will have thyroid problems or that all thyroid sufferers will be coeliac. A gluten free diet is not restrictive - unless you are a pastry fan. Pastry is the only thing that is difficult to make gluten free. You are fortunate not to have to avoid gluten but for others it is necessary.

[ThyroidLadyLondon in reply to Lalatoot]

Lalatoot, my thoughts on this, below.

[shaws Administrator in reply to ThyroidLadyLondon]

I believe 'gluten free' is just to try to reduce the antibodies that attack the thyroid gland until the person finally becomes hypothyroid.

webmd.com/women/women-thyro...

[ThyroidLadyLondon in reply to shaws]

shaws, my frustration with this gluten-free argument, is that if it was accurate, that it reduced antibodies - than it would be the case with everybody. My issue is why do some people have a positive reaction to stopping gluten, and others, like me, have none at all. Same with the iodine study I just saw, academic.oup.com/jcem/artic...

and same with the hypothesis that iodine addition to foods CAUSES autoimmune thyroidits.

All these studies just indicate a correlation, which we know does not equate to causation. What is the MECHANISM, and has this been definitively proven? The gluten-free argument is based on a hypothesis (and let's remember that it is a hypothesis, otherwise there would be a Nobel prize going for curing the world's most widespread autoimmune disease) of "molecular mimicry" of gluten to thyroid tissue, which causes thyroid antibodies, which we all have, to be produced in larger numbers, because gluten is mistaken for thyroid tissue, or thyroid tissue is mistaken for gluten, I'm not sure. And for all of this to take place, there has to be gut permiability, also caused by eating the gluten. So if you eat gluten, are GUARANTEED to get gut permiability? Again there is SOME correlation, with thyroid disease, but no CUASAL relationship actually proven, right? Plus personal experience of it not doing very much at all for me, so I can't take it seriously.

[Angel_of_the_North in reply to ThyroidLadyLondon]

I didn't think going gluten-free was doing much for me (I don't have Hashis) until after a couple of years, I realized that I didn't have asthma any more. I still have lung damage, so my breathing isn't perfect but my last inhaler was prescribed in 2011

[shaws Administrator in reply to ThyroidLadyLondon]

I went gluten-free for a year. All it did was cause weight loss (which I didn't need) so am back on gluten once more.

[Lalatoot in reply to ThyroidLadyLondon]

ncbi.nlm.nih.gov/m/pubmed/3.... The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease.

[SilverAvocado in reply to ThyroidLadyLondon]

ThyroidLadyLondon, something like 80% of people with Hashimoto's will benefit from being gluten free. The other 20% are fine to have gluten.

If you've been completely gluten free for two months and then reintroduced with no change in symptoms you can be fairly sure you're in the 20%, if you want to be completely sure you might need to go more like six months.

A smaller percentage benefit from being dairy free.

[ThyroidLadyLondon in reply to SilverAvocado]

Hi Silver Avocado. I’m not sure where the 80/20 breakdown comes from, but let’s say that it is broadly in line with the conclusion that you make. If you look at UK national health statistics for adults over 25, somewhere around 70% of people are overweight or obese. If the population of people with thyroid disease is representative of the population as a whole, (which it may or may not be,) then it would surely follow that a change in diet, which removes gluten would be incredibly beneficial to many health markers, like cardiovascular health, diabetes and pre-diabetes, gut health and so on, to at least 70% of people with thyroid disease. It seems more than highly plausible to me that the improvements in thyroid health markers would follow suit as a result of improvements in those people’s overall health, access to a wider range of nutrients, reduction in body mass etc etc and not simply as a result of taking out one specific food group. It just so happens that gluten is in the very foods that are most frequently associated with poor nutritional choices.

In order to PROVE that going gluten free is the ONLY factor changing thyroid health, there would have to be something more scientifically substantive than a correlation, to make this a sound blanket recommendation for everyone with thyroid disease. Like I have said before, it seems that if you are starting from a point of a reasonably balanced diet, presence or absence of gluten in the diet, in the absence of celiac disease, may not make much change to your thyroid health.

This doesn’t do away with your conclusion that 80% of people with thyroid disease may BENEFIT from going gluten free. I just think there is a lot of room to QUESTION that gluten actually CAUSES thyroid disease.

[SilverAvocado in reply to ThyroidLadyLondon]

ThyroidLadyLondon, I think you are trying to derive some simple principles and answers, but in fact the answers are much more complicated than that. There is a huge amount of individual difference across thyroid patients, even just Hashimoto's patients who you might expect to have a lot in common.

One thing we can know is that many people on this forum benefit from going gluten free. Some people's diet may improve when they go gluten free, particularly if they make other changes at the same time to improve their health or go for specialist diets like the AIP. Some others will eat worse if they end up resorting to processed gluten free foods, we can't really know which the majority fall into.

If you've given gluten free a good try and didn't get any benefit you're a little unusual on the forum, but there are many others in the same position. Most of us will end up being unusual in some ways by the time we've figured out what helps us feel better.

[ThyroidLadyLondon in reply to SilverAvocado]

Silver Avocado, I actually agree with you that we all got to where we are with our thyroids in different ways and what works for one person, won't be a panacea for the next. And I also have no wish to deny that there are a lot of people out there who feel better after going gluten, dairy, soy, sugar, alcohol, caffeine or whatever else free. Hey, if it works - brilliant! But gluten seems to have been elevated to some dizzying heights, with what I can tell, only hypothetical theories about the mechanism of influence on the thyroid. And there are undoubtedly many people making a quick buck from this trend, without that much regard for very much else beyond their bottom line. And I feel like the hype has gotten out of hand, with some people persevering with a gluten free diet, particularly new mums, who really need to have all the calories at their disposal, without seeing improvements in symptoms, and really restricting their diets to a detrimental degree.

I am all for having a healthy discussion about the science behind nutrition and thyroid health, including the impact, or not, of gluten, iodine and everything else besides.

[Fruitandnutcase in reply to ThyroidLadyLondon]

I very much doubt that gluten ‘causes’ thyroid disease and I’ve never come across anyone who has said it does.

I do think though that avoiding it helps an overloaded / damaged autoimmune system, for me my CRP and thyroid antibodies have come right down since going GF. My Graves is in remission as is my inflammatory arthritis as is my IBS, the first two I can measure - the third I just know.

Could easily be a coincidence - it’s certainly not a figment of my imagination because I’ve watched the numbers come down over several years - they have never increased in all the time I’ve been gluten free. It doesn’t bother me if it is a coincidence though.

I’d never say that my diet has improved by being GF because I eat the same healthy diet as I did before - I just don’t eat gluten containing grains so I’ve only really cut out bread and thickeners etc containing gluten, everything else is as it was.

I’ve always stuck to the mantra that ‘Junk food is still junk food even if it’s gluten free junk food’.

For myself from what I’ve read, in books, online and on this forum over the years I feel that going totally gluten free is less likely to damage one’s health than taking iodine - however I have absolutely no medical or scientific training to prove otherwise. It’s just my personal feeling.

However as you’re finding out, everyone on their thyroid journey has to do what they think is best for themselves.

[ThyroidLadyLondon in reply to Fruitandnutcase]

Fruitandnutcase, I am totally on-board with you, taking out gluten is very unlikely to kill you. Indeed you are likely to benefit from whatever you are replacing it with, provided it isn't the highly processed gluten-free branded products, that you are right to call out.

I'm curious about what you say about iodine. Did you avoid it? Did you test high for iodine, even with a goiter? Did you have a negative reaction to it? Why the negative sentiment about iodine? No judgement, just curious about your experience!

My own scepticism about the gluten-free space comes from my own experience of women, who are suddenly faced with hypothyroidism after a birth of a baby and are led to believe that dietary restrictions, gluten, dairy, soy, iodine, meat, eggs, are going to resolve their thyroid problems. As a post-partum, often nursing new mum, dietary restrictions are the last thing that these women need, but they go along with these recommendations, to the detriment of their energy levels, milk supply, mood, without delivering changes to their thyroid health. And because it is often presented as a panacea, these women feel like they are stuck with this sole root of making themselves better.

Again, not disputing that is DOES make some people better, which by all accounts it sounds like it really does.

[Fruitandnutcase in reply to ThyroidLadyLondon]

I’ve never checked my iodine levels but we eat oily fish at least twice a week sometimes more often and I use iodised salt. I also kick the day off with a two egg omelette - unfortunately I don’t eat much dairy -which is one of the best sources of iodine, I don’t avoid it - it’s just that I’ve never liked milk - I’m old enough to have had school milk in little third of a pint bottles that lay in the corner of the class until the teacher remembered them, the milk could vary from horribly warm to so cold it was frozen and iced up - yuk! Don’t like the texture of yoghurt although I eat cheese.

I’ve never had any sign of a goitre and I’m hyperactive rather than hypo, all in all I don’t think I’ve got any signs that would indicate that I’d benefit from iodine supplements. I suppose I’ve seen posts from other people who worry about the pros and cons of taking iodine. If I was tested and found lacking then I’d be happy to take it.

Completely agree about pregnant women and nursing mothers - that’s when you need a really well balanced diet it’s definitely not the time to eat any sort of faddy diet.