First a quick apology. I didn't reply to any of the helpful comments in my previous post because I've gone through a month from hell. All feedback was greatly appreciated. Thank you very much.
In fact, I took some of the advice that I was able to and have run into a predicament. I increased by Levothyroxine from 125mcg to 150mcg and went hyperthyroid. I then decreased it myself for a bit - some of the symptoms persisted. Talked with my doctors and we agreed to go for 137.5mcg. The symptoms have since come back. I don't know what to do and would love to hear some suggestions because what I'm not going to last like this. That's the gist; now I can explain it in a bit more detail and give you my latest thyroid results.
Okay so first up, I went to see my thyroid doctor on May 17th.
These are my results
TSH 3.020uIU/mL, given range: 0.5~5
FT3 2.87pg/mL, given range: 2.3-4
FT4 1.53ng/dL, given range; 0.9-1.7
Tg Antibody - 1700IU/mL (used to be 6600), given range: 0-40
TPO Antibody ^ "over 600"IU/mL, given range: 0-28
Calcium slightly over because I take Vitamin D 1000 IU (now know to take a type of Vitamin K - thank you!)
Cholesterol high.
Monocytes slightly over.
I went back on the 26th and asked for an increase. They agreed and increased it to 150mcg. I now know that that was a mistake because you should expect a 4 point drop in TSH alone from such an increase.
So a few weeks later (by June 10), I'm shaking, I have pressure behind my eyes, vertigo, slight loss of vision (I'm no longer HD), dizziness, lightheadedness, face went bright red, more sweating and I lost weight. I also manage to pass out on a train when I run to catch it, its packed like a tin of sardines and I hadn't eaten my breakfast. Pulse was elevated and strong but not over 100.
I can't take it (I have other problematic symptoms like breathlessness and terrible burping and chest pain for years). So I lower the meds from Wednesday the 12th back down to 125mcg for a bit (about 5-7 days) and then slice the 50mcg pill to try to have 137.5mcg (because the reason I went to the thyroid doctor in the first place was that I felt so awful). Eye issues are still then, pins and needles in legs and arms and sometimes the head too. But things steadily get better.
I got to see the thyroid doctor on June 26 to ask what to do.
Here are my results (Antibodies not measured)
TSH 2.830uIU/mL, given range: 0.5~5
FT3 2.47pg/mL, given range: 2.3-4
FT4 1.84ng/dL, given range; 0.9-1.7 High
Also Calcium has gone down and is only slightly over normal range.
Cholesterol is now within range (I was 230mg/dL, range 120-220, now 206mg/dL!)
So I continue with 137.5mcg but from June 26, I'm actually given the correct pills 100mcg, 50mcg, and a 12.5mcg pill so, as opposed to slicing up the 50mcg so as to take 75% of it and 100mcg pill, I know my dosage is correct. The first three days were fine but now, though the symptoms aren't as bad, I am now dizzy, lightheaded, sweating a lot (in bursts and fits as opposed to constantly), headaches, vertigo, slight eye pain, constantly going to the toilet, anxious, faint etc. Also, it sounds absurd, but my thyroid feels harder and like it has sunk down into the top of my chest. Which isn't good.
Now I don't know whether its possible to be affected by this so quickly. Is this just the effects of being overmedicated on 150mcg still wearing off or is this because 137.5mcg is still too much.
I wanted to increase my dosage as a result of advice I received from a friend who said in their country the idea of being 2.50 in terms of TSH would be met with horror among specialists. So I had problems with breathlessness, fits of burping, and a feeling of dry nasal congestions making it difficult to breathe from my nose for years and am still determined to get to the bottom of it. Its difficult to get all the tests I need straight away so I figured I should try increasing the dosage first. Well you know the rest. I'm not sure what I should do from here. Should I lower the dosage for the time being or does it sound like I'm misinterpreting things? Also I have not had my Vitamin D, Ferritin or B12 measured because no-one will authorize it where I live (So I'm working on that but it will take time).
I'm really desperate to hear your views on this. I got a one year old and a wife who depend on me and, having had a hypoglycemic attack at work and persistent discomfort and difficulties, it was a hard day to get through. I did it for them but objectively speaking, if I were looking at me as an outside observer, I'd be thinking somethings got to give with this guy if things continue as they are. Any thoughts and advice about this specific issue (dosage) and anything else would be very much appreciated.
Thanks to all those that replied before and my apologies. Its been a tough month or so. I always appreciate your advice.
Best wishes
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DressingGown
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Oh and I neglected to mention I took a treadmill test ECG for the Heart and had an EKG (or echo) done. All fine. So no issues with the heart.
I've had a spirometry done, skin prick allergy test and blood tests for allergies. All fine.
I have varicose veins and had pins and needles persistently in the legs - scan next week.
Slight chance of DVT aside, all looks fine on the cardiovascular front except for the fact that my SP02 does in fact go below 95 sometimes before creeping back up after less than a minute. Not sure what to make of it. I'm asthmatic. I'm taking medicine.
So breathlessness is a bit hard to explain but unlikely to be the heart.
Hi Slow Dragon, thanks for the feedback. I live in the Far East at the moment. So figuring all this stuff out has an added dimension to it. It seems as though in Japan there is much less discussion about what happens if you feel terrible even with Levothyroxine.
And getting vitamin tested costs a great deal more than that if I go to a private clinic. But yes, I will get them tested. I think there is very little choice about it now.
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg or 12.5mcg tablet.
Levothyroxine is a storage hormone. It doesn't matter about taking slightly different dose each day.
You can take 150mcg one day and 125mcg the next day.
Or take 100mcg plus 25mcg plus 1/2 a 25mcg tablet daily
It's much more important to stick to same brand of Levothyroxine at each prescription
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Low vitamin levels are extremely common
Breathlessness can be low iron/ferritin
Dizziness and pins & needles low B12
Ask GP to test vitamin D, folate, ferritin and B12 or get tested privately ASAP
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms
Your antibodies are extremely high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Your gut symptoms are likely to be improved by going strictly gluten free
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Thank you for all this information, SlowDragon, its greatly appreciated.
The thing is, when you get medicine in Japan, they don't give you the case, they just give you the individual packets. The brand name is, transliterated, Chirajin S, as opposed to Levothyroxine. I mentioned about brand swapping once and the doctor said Corn Starch in this particular pill can affect people. I must say, having to swap to Chirajin was tough but my symptoms are no worse than when I was on Levothyroxine in the UK. But because I've not got the box these medicines come in, I can't look at the ingredients. Most websites just say there is 'thryoxine' in it and don't mention anything else. This is something I guess I will have to look into further.
To be honest I tried going gluten and dairy free but having moved countries for work and with my wife having few friends at the moment, it felt quite harsh to basically never go out to eat because everywhere has gluten. I tried it for about 3 months last year and I think there were marginal improvements. To be honest, she's supportive and I might do it again, but its a tough thing to do. Particularly when you're out at work and you've got to turn down invitations constantly because there is nothing you can eat (not sure about the UK but whatever restaurant you go to, you can guarantee all the food there is gluten loaded).
gluten and dairy free is my last option. I'll do it if there is no choice.
As for checking out the brand and vitamin testing. This is something I can try to do this month.
SlowDragon, it took a while but please see my results:
Blood Calcium:
January 2018: 2.47mmol/L (range = 2.15-2.58)
September 2018: 10.3mg/dL (8.7-10.1)
March 2019: 10.4
July 2019: 10
December 2019: 10.5
Calcium (ALB Adjusted)
March 2019: 9.8mg/dL (8.2-10.2)
July 2019: 9.6
Ferritin
September 2018: 59.1ng/mL (<280.0)
August 2019: 115ug/L (30-400)
December 2019: 53.6ng/mL (<280.0)
Iron:
December 2017: 68ug/dL (56-168)
Folate - Serum:
August 2019: 7.83ug/L (>3.89)
Vitamin B12:
December 2017: 290pmol/L (>185)
August 2019: 157pmol/L (37.5-188)
Vitamin D:
December 2017: 22.6ng/mL (30.0-99.9)
August 2019: 46.8nmol/L (50-175)
Sex Binding Hormone Globulin:
August 2019: 25nmol/L (18.3-54.1)
Most recent Thyroid Test:
TSH: 3.68 uIU/mL (0.5-5)
FT4: 1.49ng/dL (0.9-1.7)
FT3: 3.2ng/dL (2.3-4)
I have Armour thryoid and have yet to try it. Nothing else has worked. The symptoms of breathlessness, severe fatigue, burping have persisted. I am not sure whether to try it and there are no doctors where I am that would administer it. I cannot afford private consultations abroad. I will ask this question more broadly in a new thread. I will take the medicine on my own accord but was wondering what your experience with Armour or T3/T4 combination therapy is?
I am not sure how I have got this far to be honest. The down days are the worst. Take care amidst the Coronavirus and my best wishes to you.
But you really weren't over-medicated - certainly not hyper, because that's a physical impossibility - because your TSH is still too high and your FT3 right at the bottom of the range. Your FT3 is still right at the bottom of the range because you are a poor converter. And, keep increasing the levo is obviously not the solution for you, because you don't feel well with it high. What you need is a reduced dose of levo and a little T3 added.
Now, it might be the case that you aren't converting well because you have nutritional deficiencies, but that's not always the case. Sometimes you never find out why you don't convert well. But, even so, it is essential to get your nutrients tested - vit D, vit B12 folate, ferritin - because you need them optimal for you body to be able to use thyroid hormone correctly. And, if they are low, they will be causing symptoms. It really does sound like you have low B12.
Or, it could just be because you have Hashi's that you don't convert well. Often happens. And, there's not much you can do about that. You need the T3. BTW, once you've had over-range antibody tests, you have Hashi's, and it doesn't go away, so there's no need to repeat antibody testing.
Now because I've moved to East Asia to start my academic career, I'm in the process of trying to negotiate with the doctors what to do. I finally have got into one of the most advanced facilities in my area to talk about T3 (all others so far just deny that it exists in Japan...)
So the doctor came to the conclusion that because my FT3 is in range both times that now is not the time to talk about T3 supplementation. What she did offer however was to increase my FT4 supplements and see if symptoms alleviate. This has never happened with any other doctor whose TSH range is sacrosanct. I figured I can't say no. I do this, it doesn't work then I can push for T3. But this will take time. Its not as possible to talk with doctors as it was in the UK, and even then it was difficult.
Testing vitamins makes sense and perhaps even making the necessary changes in the diet. Though gluten is mostly eradicated already - I just like to go out with my wife and son sometimes to eat...
I've been working on getting T3 because I know that there are those who undergo trials with combination therapy but I don't know what the criteria is and am still working on persuading my doctor about it.
Thanks for the feedback,
Getting vitamin tested is really expensive. I've tried thus far to convince my doctors of the merits of it. To no avail (even when I say I won't bother using my medical insurance for it but pay out of hand), they say there is no point. And if you want to get anywhere with doctors here it is impossible to outright disagree. You have to respectfully accede and then when things don't work go back, and repeat.
I will look to private options and get it done this month. I need clarity over this issue.
I am surprised that things are so difficult in Japan. Given that they have a high population with Hashi's. I wonder if they really don't have T3 there. There are some countries that don't have it at all, like Portugal and Spain. What do they say about your FT3 being so low in the range? I just don't understand doctors' attitudes to ranges. How can they possibly think that someone right at the bottom of the range can feel the same as some right at the top of the range. But, it would seem, it's a universal problem. Nor do I understand how she can think that keep increasing your T4 will suddenly alleviate your symptoms. Doesn't she know that it's T3 the active hormone?
Testing vitamins makes sense and perhaps even making the necessary changes in the diet
I doubt it's your diet the problem. Hypos tend to have low stomach acid, so they don't digest and absorb nutrients very well. Which is why we all take so many supplements. We just can't get enough from our food.
Though gluten is mostly eradicated already
Gluten-free has to be 100% or there's no point. But, surely, the Japanese diet is already gluten-free, isn't it? I don't know much about it, because what I've had of Japanese food, I don't like it. But, they don't eat bread and cakes, do they? Please excuse my ignorance. lol
I don't think I'd do very well in Japan, at all. I'm not very diplomatic. But, I hope you're liking it there. Must be a huge change from the UK!
What happens is that if you're within range, the doctors who are trained as GPs have little training over how these ranges are established. So they take the established ranges as golden because it is empirical. So the approach is actually perfect - the null hypothesis is that its not problematic until their medical associations tell them otherwise. The problem is that it really doesn't matter what you say to them or any one else says to them or how many people are telling them the same things; if the TSH is within range and your FT4 (sometimes they don't bother with FT3) is within range then you're thyroid is fine and its 'unrelated'. This is shorthand for go talk to another specialist. So you have to go back to your GP you then refers you somewhere else unless he thinks you're a hypochondriac (in Japanese this is more like 'delusions of victimhood'). So you have to be very careful with what you say and if you are accused of being stressed or over the top you have to wait for months before going back and saying 'yes, I think you're right but I feel I'm getting better having applied some stress management techniques' etc (which I personally really do), and then seeing if you're referred elsewhere. So I have been passed around, my insurance company is probably not going to like it but there is no choice, and hopefully after all other problems are ruled out including the fuzzy and impractical concept of stress (diagnosed, of course, by professionals who aren't trained to recognise it in a clinical setting), then you'll either be told to put up with it or they might try different trials.
Hashimotos is considered what is called a 'difficult disease' by many companies which hinders your employment chances, particularly in cut-throat corporate jobs, but for academia there is more rationality about it, so I'm lucky there. I read once that most of Japan's stored T4 medicine was in one location that was almost destroyed completely as a result of the March 11, 2011 tsunami and Fukushima nuclear disaster which led to a crisis in supply. So I'm not always assured that the management and treatment here is as good as it can be. However, if you're the kind of guy who responds well to Levothyroxine, then from the medical side of things, its difficult to complain. If you're not, then you're on a goose chase, as is the case in most countries I suppose.
Its interested you talked about FT3 conversion. I checked out some of my result from 2017. I don't have them on me but I will post them here later on today. But my conversion to FT3 was actually fine and if you'd ask me to guess, I'd wonder whether my conversion rate undulates and varies quick a lot. Yesterday it felt like I had way too much thyroid hormone and today its better (for now). It eased off last night and my heart rate went down to hypothyroid levels again. When I switched to Japanese brand Levothyroxine (Chirajin S) in August last year my BPM went into the low forties. Its a bit of a nightmare to be honest.
I'd be interested in T3 medication and will push for it, but if I am able to convert to FT3 sometimes and not others then I'd be worried that I'd oversupply on T3 medication. Not sure what the scientific literature says on that.
Next step will be vitamins. But last year in September, I went to have basic tests for other auotimmune diseases and I think they looked at Ferritin which was normal. I have had vitamin B tested two years ago and it was very good. Vitamin D was 'insufficient' as opposed to 'deficient' and now I supplement on that. But I haven't had that tested in a long time because its difficult to get it done here.
Almost all flavored products, all sauces, even sushi, has gluten on it. I think it is because the country used to have a very integrated economic model before globalization tore it apart. And the legacy of that is that a lot of the starch and other bases for foods and seasoning are made by the same handful of factories that supply it to other Japanese companies to make the end product. So almost everything has gluten on it. After that, if you want to get rid of soy you might as well eat the grass outside. Everything else will have traces. But I thought the same as you before I tried it here. Interesting, but frustrating for me!
Oh dear. Perhaps not the best country for a hypo to live in! Those doctors sound like very exaggerated versions of all the doctors I've ever met! But, at least with western doctors you don't have to worry too much about hurting their feelings. lol
I think they looked at Ferritin which was normal
Be very careful with that word 'normal'. It doesn't mean much. All it means is 'in-range', and as we know, 'in-range' isn't the same as 'optimal'. 'Normal' is an opinion, not a result.
That's terrible about the gluten and the soy! I'm right not to go to Japan, then! The gluten I'm ok with, but just a whiff of soy lays me out flat. I cannot tolerate the stuff.
Is that right? You know all this started when I first came to Japan as a student. I do wonder whether it was the food that triggered it... soy is really common.
Now, what they said about Ferritin is true. But I stumbled across some tests results I did in the UK before I left. I didn't know much about what nutrients and vitamins meant what so I've forgotten that I took them.
This is was I got:
Vitamin B12 290pmol/L (Normal: > 185)
Vitamin D total 22.6ng/mL (Deficient <10.0; Insufficient 10-29.9; Desirable 30.0-99.9; Possible Toxicity >100.0)
Iron (is this different from Ferritin? Sorry for my ignorance!): 68ug/dL (56-168)
I had similar symptoms back then too so I do wonder about the cause of breathlessness and terrible indigestion/gastritis. Whether or not they're connected, I don't know. They both persisted after Fundoplication surgery and when I get back burping, my nose passage swells up and it get hard to breathe. Its pretty relentless. So I take Asthma medication - not sure it helps but they're better than anti-acids.
Also, I just posted more thyroid results in a conversation with SilverAvacado on this page. You don't have to look at them if you don't want to. They detail the results for up to two years. But if you think there is something I'm missing and I'm not asking too much, it'd be great to hear your view on it.
Your thyroid problems started when you first went to Japan? Could be the high iodine diet. Excess iodine can trigger Hashi's.
Vitamin B12 290pmol/L (Normal: > 185)
I do wish they wouldn't do that with ranges. It gives you no idea of what your result is really like. On a normal B12 range, I would say 290 is very low but that's because the upper limit is usually around 700. But, I think it should be at least over 500, so that's a bit low.
Your vit d is low.
Iron is different from ferritin, but I've met doctors who think they're the same! Ferritin is the protein that stores iron. The body takes iron out when it needs it and puts some back when it's got too much. 68 is quite low. Low iron/ferritin can cause breathlessness. And fatigue.
I take it you had Fundoplication surgery because you had GERD? GERD can be caused by low stomach acid - doctor automatically take it that you have high stomach acid, but hypos usually have low stomach acid. Did they even check this before doing the surgery? What happens when you have low stomach acid is that the food isn't fully digested, so doesn't pass out of the stomach into the gut, but sits in the stomach and ferments. This causes a volcanic-like effect which forces the acid and partly digested food up into the oesophagus. That could be your problem. But, yes, it can affect breathing.
Looking at your past results, it appears you've always been under-medicated to a great or lesser degree - even when you were converting reasonably well. The conversion appears to have got worse between March and May this year. So, what happened at that time? Anything change?
Wow. This is quite revelationary stuff. I have been really committed to finding empirical data before using vitamins and yet at almost every turn the ranges seem skewed and unreliable. It makes you wonder how anyone makes any sense of it at all.
I did have a Fundoplication, yes. I had a Manometry in which they said stomach acid levels were 'normal'. But that day, weirdly, I felt absolutely fine. I had also a 24 hr ECG and a 24hr endoscopy in which I wrote down when symptoms flared up. The decision for a Fundoplication was made on the basis of a correlation with acid reflux and the flaring up of symptoms such as breathlessness. It seemed a fair shout. Though I had wondered about low stomach acid, I was concerned about using HCL with Betaine in case it turns out to be the opposite problem.
I was also worried that if I have Chronic Gastritis whether supplementing stomach acid would harm the stomach. Not long ago my Grandma died of stomach cancer so I thought to be careful on that. But a 'volcanic like effect', as you put it, is absolutely perfectly put, I can't think of a better way to describe the sensation I get when my stomach kicks off in fits and bursts.
Perhaps I should ask for an autoimmune gastritis test before taking action on presumed low stomach acid. All of this all began back in my early twenties nine years or so ago when my stomach just kicked off and I burped all the time and couldn't swallow very well. Over time the nature of it changed from intense reflux to it coming in fits and bursts and it affected my breathing. My guess is that I went from slightly hyper to very hypo in this time.
Honestly, I will have to think about what to do on the vitamin side of things. I will take more tests next month when I'm back in the UK. If I'm low but in normal range, I will still supplement but it would have been easier if I was out of normal range so I could persuade the doctors of the necessity of supplementing. C'est la vie. I will do it anyway!
When I was 21 I went to Japan for an exchange trip for a year. The worst of the symptoms started then and improved slightly after a few years in the UK. I then went back when I was 26 for a year while I was researching and since then it has never got better. I'm 30 now and moved to Japan last year. I wondered whether it was something about Japan but couldn't think of anything and thought perhaps I was being paranoid. I avoid iodine as much as possible now and live a lot more healthily.That could be the reason I've not had any major crashes up to now, so you might well be right. I'll continue to avoid it at all costs!
Thank you for all your thoughts and feedback. This all gives me a lot to work with. For now I will go back to 125mcg. I have a few tests to run on my eyes (which got much worse when I increased 150mcg - blurry, vertigo, pressure etc) and my legs which got pins and needles for no reason. We now know it is probably due to low Vitamin B12. This is something I can bring up if the test results come back normal for the scan and hopefully we can move on from there - I'd rather be given injections if my absorption capabilities are limited. I'll do more tests in the UK when I'm back.
Thanks for all the help. Realizing everything that I've learnt here over the space of a few days could literally have taken years if I did it alone. Its really helped a lot!
at almost every turn the ranges seem skewed and unreliable
In what way? They're too wide, admittedly, but I wouldn't have said they were skewed.
I was concerned about using HCL with Betaine in case it turns out to be the opposite problem.
You could try something less drastic, like Apple Cider Vinager in water before meals, or just some vit C. Have a look at this article, it talks about testing for stomach acid, with a test you can do at home:
it would have been easier if I was out of normal range so I could persuade the doctors of the necessity of supplementing
Doctors know nothing about supplements or nutrition in general. They don't 'do' it in med school. Even if you managed to persuade them to prescribe something, it would be the wrong kind and/or far too little. You're better off posting on here for advice on nutrients.
Well I have heard for hypothyroidism for example that the ranges are skewed because of the number of people with subclinical hypothyroidism who are part of the sample they use to determine normal ranges. I'm not sure whether this is true but if it is, perhaps it could apply to vitamin levels too. At a more general level, I do wonder why the levels are so wide. I have gone for almost two years assuming my iron and vitamin b12 was fine because of them. It seems really difficult to understand what to rule out.
As for the nutrients, that's exactly what I'll do. I'll seek advice on here. I'm so glad that there are people I can ask.
For Apple Cider Vinegar, I tried it before as well as vitamin C and they didn't seem to do much. For Apple Cider Vinegar, after a few weeks it just seemed to make it worse. I wondered about taking Thiamine to see if things improve. But if not, I'll pursue HCL with Betaine.
At the moment, I am dealing with pretty debilitating vertigo and headaches since the medicine increase. As you know I've gone back down (now down to 125mcg). I've had an eye test and a heart stress test. Things look fine but ever since I upped the Levothyroxine I've had fits of sweating and vertigo, particularly after food. I'm really hoping that once I stay on the same dose for a few weeks, this goes away. Its making doing my job really difficult!
The plan in any case is to get the vitamin tests done and then try to get the doctor to consider T3-T4 combination with T4 at 100mcg. Fingers crossed.
Doctors, please do not increase the T4 dose in a “poor converter” with low GD whose T4 is already high-normal. This can result in even lower T3 and/or adverse cardiovascular symptoms from excess T4. Pushing the T4 level beyond a person’s set-point will decrease the action of the enzyme Deiodinase type 2 (D2) and increase the action of Deiodinase type 3 (D3). The role of Deiodinase type 3 is to convert T4 into Reverse T3 and convert T3 into T2, thereby causing a net result of T3 depletion.
A poor converter without enough thyroid tissue to supply T3 simply needs T3 therapy adjusted to optimize their Free T3 to a target at or above the average FT3 of a person with a healthy thyroid gland, according to Larisch et al, 2018. That’s an average, though, and each person is unique.
A chronically higher-normal T4 and lower-normal T3 can worsen health conditions like heart failure, increase frailty in old age, and reduce lifespan, according to research conducted on the T4-T3 ratio in elderly people. (I appreciate you're not yet in that category )
I'm unsure, given the above, what causes the over-substituted/hyper symptoms.
Wow I've never heard anything about this. Thank you very much. This is absolutely something I can take to my doctor and ask her about.
Hopefully she can then move me on to T3. But there is a lot of pushback. Thankfully I did a stress test on the heart so that there can be no worries about my capacity to persist with T3. After work, I'll look into this more.
You can't "expect" any particular level of drop in TSH from an increase in levo (and it didn't happen, did it? QED) - it is completely individual and anyway TSH doesn't make you feel anything or matter much when you are on meds. You also can't "go hyper" if you have an underactive thyroid and your May results show that you were undermedicated then. Breathlessness can be caused by low iron and/or B12. Your free T3 level compared to free t4 shows that you are not converting well. Optimal vitamin levels would help that, but you might need a small dose of T3 with reduction in levo.
Thank you. My 1yo is pestering me and wants attention so I'll be quick!
This all seems consistent with the advice above so that is very reassuring. Its so nice to talk with people who can actually help. Thanks so much. Its tough to get all these tests where I am but I'll have to do it for my family. There's no choice so that's what is going to happen.
I'll post again here or elsewhere when I have the results.
Thank you for your feedback, it might make all the difference
I agree with others, increasing Levo by 25mcg wasn't a mistake, it is the best practice thing to do. Its just that adjusting thyroid hormone always carries the risk that it will make you feel worse and have to do as you've done - drop back to a lower dose. Its all trial and error to find the optimal dose, and you may well feel worse a few more times before you feel better. Its up to us to make space in our lives for this to happen!
It sounds to me like you are under a lot of stress, and I wonder if there's anything you could do to reduce it. Cutting down on working hours, maybe, reducing some of your ambitions, and taking care of yourself better. In the story where you're running for the train with no breakfast, it might have been a better idea for your illness if you ate your breakfast and waited for the next train! I hope you learned your lesson, but I think many people need to have an experience like this many times before they learn. Hashimotos is a serious illness, it's not to be messed about with. I think you need to accept that you are not at 100% at the moment, and you may never be truly 100% or be able to do as much as your friends and colleagues can do. Then plan your life around that.
I've got a good friend in a similar situation to you with conversion. He did very well for 20 years on Levothyroxine alone, but sometime in his late 20s he suddenly became very bad at conversion. It seems to be not too uncommon on the forums.
Started a new comment because these sometimes get lost!
TSH 2.830uIU/mL (0.5~5)
FT3 2.47pg/mL (2.3-4)
FT4 1.84ng/dL (0.9-1.7) High
I'll explain to you how we know this is poor conversion. TSH or thyroid stimulating hormone is the chemical messenger made in the pituitary to tell the thyroid to make more hormone. When there isn't enough hormone it will be high. A healthy person will have a number around 0.8-2, and your friend was right that 2.5 is a cut off to show something is wrong with the thyroid. Once on hormone replacement most people will feel well with it much lower, bottom of the range or below. Yours is still very high for someone on hormone replacement, and that tells us straight away that you are significantly undermedicated.
FreeT4 tells us how much T4 is available in your blood. Levo contains only T4, so this gives an indication how much your tablets are helping. Most people taking Levo will need this high in the range or even a bit over. Although having a too high T4 can disrupt how your body uses thyroid hormone. Yours is over range here, this is not necessarily a bad thing, but is something to be cautious about, especially if there are symptoms. This high freeT4 makes a high TSH quite surprising, we expect it to be low when hormones are high.
But any mystery is solved when we look at your freeT3. This shows how much available T3 you have. T3 is the active hormone, and your body has to convert all the T4 it gets into T3 before it can be used. This number most closely reflects symptoms, because T3 is required for every cell and organ in your body to work properly. A healthy person would have this around the middle of the range. Most people on hormone replacement will feel better with it in the top third of the range. Yours is at the very bottom of the range. This explains why you feel rotton. It's quite unusual for a low freeT3 to elevate the TSH, but not unheard of when conversion is really really terrible.
Your blood tests show the most clear cut case of needing T3 that you can get, high TSH, high fT4, and low fT3. Doctors, as you've found, can be absolute maniacs and demand your fT3 be under range. But honestly I would be surprised if it was possible to have an under range fT3 with fT4 over range!
A possibility to keep on the back burner is to buy your own at some point. With the state of your current blood tests, at some point you will really need T3 to get a big improvement in your symptoms. In the meantime, jump through every hoop that's put in front of you by doctors, and keep pushing and complaining. Sometimes these treatments are available to people who prove they are sick enough by showing up many times. Do you have access to traditional medicine where you are? Its possible they might have options.
And until you get T3, take it easy with a lot of things, every activity you do requires thyroid hormone, and it gets used up and then isn't available to keep heart, brain, lungs, etc running well. So reduce activity as much as you're able to, don't do extra stressful things to your body like skipping meals or taking on a high workload, rest as much as you can, etc.
Silver Avocado, thank you so much for your comments.
The thing is I looked through my old results and my conversion was usually alright.
I can write them down here (there are gaps because I lost some of them and the ranges and units of measurement differ because I have changed practices a lot)
2019
June 26
TSH 2.830uIU/mL (0.5~5)
FT3 2.47pg/mL (2.3-4)
FT4 1.84ng/dL (0.9-1.7) High
May 17
TSH 3.020uIU/mL (0.5~5)
FT3 2.87pg/mL (2.3-4)
FT4 1.53ng/dL (0.9-1.7)
March 04
TSH 2.73uIU/mL (0.35~3.73)
No FT3 measured!
FT4 1.53ng/dL (0.88-1.81)
2018
August 30
TSH 2.05uIU/mL (0.35~3.73)
FT3 3.0pg/mL (2.2-4.1)
FT4 1.49ng/dL (0.88-1.81)
June 18
TSH 3.74uIU/mL (0.35~3.73) High
FT3 3.3pg/mL (2.2-4.1)
FT4 1.46ng/dL (0.88-1.81)
April 28
TSH 1.61uIU/mL (0.35~3.73)
FT3 3.5pg/mL (2.2-4.1)
FT4 1.6ng/dL (0.88-1.81)
February 13
TSH 4.885mIU/mL (0.450~4.50) High
FT3 5.35pmol/L (3.50-6.5)
FT4 17.64ng/dL (10.0-23.0)
2017
November 11
TSH 12.57mIU/mL (0.40~4.70) High
FT3 4.5pmol/L (3.5-6.5)
FT4 14.9pmol/L (9.0-25.0)
June 19
TSH 3.63mIU/mL (0.40~4.70)
FT3 5.0pmol/L (3.5-6.5)
FT4 18.0pmol/L (9.0-25.0)
So I don't really understand why things have changed. And if I don't understand why my conversion was got worse, then I can't rule out that it won't fluctuate again and get better. If I'm taking T3 supplements then what happens? I'm really interested in taking T3 medication, but can't quite understand why I seem to go up and down so often.
I agree with everything else you said about understanding my limitations and accepting them. Its tough but its the way it is.
Hi DressingGown, sorry you might have already said this. Are all these results once you'd started thyroid hormone? Were you on the same dose the whole time or did you adjust your dose?
If you've been on a few different doses, could you please cut and paste these results and fill in the dose you were on next to each one?
Also have you felt a bit rubbish the whole time, or did you feel good at first and at one time started feeling bad?
You're very welcome! Everyone finds it very tough to keep to their limits and accept that they have an illness, its a work in progress for us all!
Overall, all these results look quite undermedicated. Your TSHs have been well over 1, often much much higher than 1.
April 2018 is the best freeT3, FT3 3.5pg/mL (2.2-4.1), with freeT3 in the top third of the range. From that time onward its been gradually declining, with each result lower than the one before. At the same time, freeT4 has stayed about the same till the recent increase. TSH has been a bit up and down but around 3 in that time.
As I mentioned before, its possible for conversion ability to change over time. Its also common to do well on Levothyroxine for years and then quite suddenly it stops working as well. Often these is no clear explanation for why. One partial explanation is that the body is able to make do for a few years with inadequate supplies of hormone, but at some point it catches up with us and symptoms start popping up. Your body has been managing for three years without enough hormone, and you may have been ill for years before the diagnosis (most people are).
In April 2018 my advice would have been to have a dose increase if you wanted it, because there is still a bit of room for an increase.
April 2018 was not a particularly easy month for me but May and early June that followed it was actually the best since I was diagnosed. Since then it has been uphill.
Its great to have the results put in context. Because I'm off to the UK next month so my parents can meet my son, I won't be able to go on T3 for some time but I will fight for it because the increase in T4 medicine has just made things far, far worse.
That indeed was one of the hoops that I needed to jump through. But when I'm back I can look for Vitamin deficiencies and other hormone imbalances which might shed some more light on it.
I replied below but I hadn't answered your question here.
I felt rubbish throughout most of it except the end of May and early June 2018. I had a good run in October 2018 too. But breathlessness and indigestion characterize the bulk of symptoms. And while they get better and worse, they have remained throughout. Other symptoms more classically associated with hypothyroidism come and go and greatly improve around the periods when my TSH was lower.
I can try to figure out when the dosages were increased though I don't have records with me.
Here we go:
2019
June 26
TSH 2.830uIU/mL (0.5~5)
FT3 2.47pg/mL (2.3-4)
FT4 1.84ng/dL (0.9-1.7) High
May 17 (Increase to 150mcg - terrible consequences!)
TSH 3.020uIU/mL (0.5~5)
FT3 2.87pg/mL (2.3-4)
FT4 1.53ng/dL (0.9-1.7)
March 04
TSH 2.73uIU/mL (0.35~3.73)
No FT3 measured!
FT4 1.53ng/dL (0.88-1.81)
2018
August 30
TSH 2.05uIU/mL (0.35~3.73)
FT3 3.0pg/mL (2.2-4.1)
FT4 1.49ng/dL (0.88-1.81)
June 18 (Increase to 125mcg)
TSH 3.74uIU/mL (0.35~3.73) High
FT3 3.3pg/mL (2.2-4.1)
FT4 1.46ng/dL (0.88-1.81)
April 28
TSH 1.61uIU/mL (0.35~3.73)
FT3 3.5pg/mL (2.2-4.1)
FT4 1.6ng/dL (0.88-1.81)
February 13 (Increase to 100mcg)
TSH 4.885mIU/mL (0.450~4.50) High
FT3 5.35pmol/L (3.50-6.5)
FT4 17.64ng/dL (10.0-23.0)
2017
November 11 (Increase to 75mcg)
TSH 12.57mIU/mL (0.40~4.70) High
FT3 4.5pmol/L (3.5-6.5)
FT4 14.9pmol/L (9.0-25.0)
June 19
TSH 3.63mIU/mL (0.40~4.70)
FT3 5.0pmol/L (3.5-6.5)
FT4 18.0pmol/L (9.0-25.0)
On 50mcg at this stage.
I hope this helps. Thank you for your advice and feedback. I really appreciated it!
Interesting, even though you have had a raise since April 2018 it didn't really increase your levels. Someone else in the thread suggested you might have developed vitamin deficiencies over that time which harmed your conversion. I think that is worthd looking into. Being hypothyroid trashes our vitamin levels and many need to supplement.
If you are thinking of doing a mail order blood test you could order it soon and have it delivered to a friend or relative in the UK, so it will be waiting for you.
Well since then I've got really intolerable hypo symptoms but also vertigo and bursts of headaches that started when I had symptoms that seemed hyper. Had the eyes checked, all fine - if it continues then ENT but I know its the thyroid. Its been tough but looking forward, I think what you recommended is exactly what I'll do next. And I'll post the results up here asap. Another possibility that I neglected to mention is that from late August 2018 I switched from UK levothyroxine to the Japanese brand chira-jin. This is something I'll look into as well. But it doesn't seem to be an absorption issue rather than a conversion one. So I'll get the vitamins tested! Its really great to have a little bit of clarity around the issue. When you can't make any sense of it, it gets much harder to stay optimistic and motivated about how you can change it.
People often get along better with some brands than others. I haven't heard of Chir-jin before on the forums, so unfortunately you don't have other people's experiences to read about. Often the problems with brands are to do with excipients causing intolerances. Although the symptoms can be mild and difficult to pin down. Sometimes one brand seems less potent, so it's like a dose reduction to change over.
If you felt anything strange then its definitely a possibility it could be the change in brand.
It can be hard to tell the difference between hypo and hyper symptoms. Lots of symptoms can pop up for both. And being hypo can cause the adrenals to act up, which is often a speeded up feeling, racing heart, feeling hot, restlessness, etc.
Being thyroid and trying to get treatment is definitely a very confusing situation Its a very slippery illness because the symptoms are so subtle.
Thank you SlowDragon, I'm coming back to the UK next month in fact, for about three weeks. So I will try to do these tests when I'm back and if there is anything anomalous then I can take that back with me to Japan and give it to my doctors as empirical proof of dysfunction or whatever else. I'll be sure to do that test and certainly all the ones you recommended above.
I'll post them on here, but there is of course no obligation to see them.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Stop any supplements that contain biotin a week before testing
In my situation it may take a bit of time to get those tests done. But I can look for options where I live and if not do them all when I'm back in the UK. Either way, I'll be sure to get them done as well as all the other tests people have kindly recommended here and in a previous thread and then post them asap.
I really hope my doctor will listen and the best I can do is provide her with the empirically based information on here and the results from further testing. Fingers crossed!.,
Hi DressingGown - your post was kindly forwarded to me by a member on here as she knows that I’m about to embark on a three week trip to Japan and she’d already asked me about the gluten situation. From my research it’s a tough country to visit as, just as you said, so much stuff contains wheat plus of course there’s the massive language barrier and the general unawareness of food allergies in Japan.
I’ve been strictly GF for two years here in the UK and not keen to gluten myself if poss out there.
Do you belong to the dreaded Facebook? If not, it might be worth joining purely for a fantastic group on it called Gluten-Free Expats Japan. I have gleaned lots of recommendations from their members posts (including a GF beer thank goodness!!) and there’s the facility to search individual towns for restaurants that can deal with gluten allergies. I don’t know where you are but there are a handful of 100% GF restaurants in Kyoto, Hakone, Nara and Tokyo etc (you can see where we’re heading!!) and probably other places visited by tourists. In addition, people post photos of the list of ingredients on the back of foods they’d like to try & members who can read Japanese reply whether or not they’d be safe. There are suggestions of where to buy GF soy sauce (tamari) etc and shops that stock GF products such as Lawson Natural. I also printed off a wheat allergy card to show in restaurants. The other thing I’ve done is got to grips with Google Maps on my phone as you can search ‘gluten free near me’ to get suggestions.
I know that it’s going to be a tough 3 weeks and that I will end up consuming some gluten. I can imagine how difficult it would be living out there and you have my genuine sympathy. It’s simply not a culture that ‘gets’ food allergies!
I hope you have a terrific time in Japan first and foremost. I don't have Facebook because I think its pure evil! But my wife does and so I'll be a complete hypocrite and ask her to join the group. Thank you so much for the recommendation.
Gluten is seldom spelled out on the ingredient list. What it will usually say is 大麦の一部を含む or 大麦 (Oh mugi) (Oh is a long vowel pronunciation so expand it for a little bit) look out for this. This is just barley.
If you go to a convenient store, just assume its on every product. Though I have had my doubts about the naturopath approach one thing you could do is get gluten digestive enzymes and try to take them after your meals. Even sushi and things you'd never expect tend to have it.
But if you're part of that expat group then you know more than me already! Thanks so much for the info.
Just to say, sometimes Google maps churns out restaurants that say they're gluten free but what they mean is that they have gluten (guruten or, much less commonly, fushitsu) free options. And when you get there its not obvious what they are if there are any. So keep your wits about you.
And by the way, if you run into trouble in Japan let me know here because I might be able to help you out.
Hi Dressing Gown- thank you so very much for your informative reply. What a complicated business it is out there! I’ve taken solace from a number of coeliac travellers who’ve survived their trips to Japan but perhaps I’ve been lulled into a false sense of security! Argh!
I’m sure you’re right about Google Maps. I shall be very careful. I was hoping to perhaps find one option that I can eat at a few restaurants that can manage to accommodate me. A couple of 100% GF restaurants that spring to mind are Little Bird and Captain Cook in Tokyo and Gluten Free Is The New Black in Nara. The Facebook group raves about them and I can understand why, when eating out is such a hassle normally. I’m taking tamari with me to avoid soy sauce on sushi etc. Otherwise, I will hope to cope and survive feeling a bit rough sometimes.
That’s a very kind thing to say about if we run into any trouble. Thank you! My biggest worry is natural disasters...we’ve taken out extra insurance, I have various Japanese apps on my phone for warnings etc of tsunamis, volcanic activity (I’m watching Mount Hakone carefully as we’re due to have a couple of nights there but the alert level has been raised etc), Japan Shelter etc, we’ve practised a basic earthquake drill (drop, cover, hold etc) and I may even buy an emergency ‘go bag’ out there if I get really nervous. My husband thinks I’m mad!
Apart from the above hassles of food and earthquakes, I can’t wait to get out there after six months of planning and waiting! Ishigaki in Okinawa is our first stop....
Not sure if this message will get to all who commented here but I posted some more thryoid blood work results on this page. Your input would be much appreciated if you have the time!
I'll put them through SPINA thyr within the next six or seven hours. Your doctor/endo is likely to be out of their depth with the software, so you could say it's based on multiple feedback loops rather than a simplistic understanding, and has been evaluated in clinical trials. Have you any test results from before treatment?
No sadly not. I was at a hospital at the NHS when i was diagnosed and I hadn't understood the signficance of it. But I had slight fatty liver and my doctor said that I was 'well out' for a young guy. If it helps the analysis you could assume its about ten and explain any anomalies in the results away as limitations in the data. Happens in academic research all the time!!
Thank you for this. I feel I'd be much better equipped if I can approach the doctors politely with empirical data
Your conversion efficiency from FT4 to FT3, signified by GD in the Structural Parameters calculated by SPINA thyr, has worsened from moderate (23-29 nmol/s) to poor (<23 nmol/s).
Conversion efficiency is in large part reduced by loss of functional thyroid tissue, since the thyroid gland not only secretes T3, but converts T4 into T3 (this is the theory behind the “TSH-T3 shunt”). The rate of T3 secretion and conversion both increase with higher levels of TSH stimulation of thyroid tissue. Higher TSH may also enhance T4-T3 conversion beyond the thyroid wherever TSH receptors are present.
Your November 2017 TTSI of 749 may indicate severe pituitary-selective resistance to thyroid hormone. From thyroidpatients.ca/2019/06/..."consult research publications and experts regarding therapy and do not trust TSH to indicate thyroid hormone (in)sufficiency."
"In RTH syndromes, the person has a biological requirement for higher Free T3 and possibly higher Free T4 levels than the normal levels found in healthy controls, at the upper limit of reference or slightly higher.
In RTH, the therapeutic goal is not always to normalize the TSH with T4 medication because doing so may result in excess T4. Some tissues may become thyrotoxic while others may be euthyroid or hypothyroid, depending on the degree to which affected thyroid receptor variants are expressed in those tissues. Usually RTH affects thyroid hormone receptor beta (TRAB gene)."
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