I am a 37 year old European male (75 kg - 183 cm). I've been diagnosed with hypothyroidism around 15 years ago. At that stage I had a goitre, which eventually went away either due to Thyroid meds or perhaps the immune response lessened or it killed off most of the thyroid (thyroid antibodies were detected, meaning Hashimoto's). Now the goitre is returning and I was wondering if anybody can point me in some directions, which I can try to reduce/eliminate it again.
Lately I've been honing my meds and was trying NDT and that is when I started occasionally feeling my goitre again (15 years since the first occurrence). This would typically happen in the evening. I thought that this might be because by the evening my T3 is too low. So now I'm trying to get my FT4 to mid range and FT3 to upper quartile (75%) of the range. However, I'm starting to get more and more of that goitre feeling.
I am getting a thyroid ultrasound scan in a couple of months (after the lockdown) to make sure this is not cancerous. Because the goitre feeling varies day by day and even during the day I think it's more of a body reaction rather than cancer (and definitively hoping I'm right!)
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I don't quite understand the cause as my thyroid has not even been operating in years and I thought most of it is gone. Is is because it isn't all gone and I'm getting some fresh immune response all of a sudden now?
One theory is that the goitre is perhaps not related to my thyroid meds, but instead it has to do with food and/or supplements. Just this week I've started taking 6 drops of Lugol's Iodine solution as my iodine loading test showed that I was deficient in it and hence my alternative doctor has told me to supplement for 6 months. I'm also eating a large variety of foods in the morning with my breakfast consisting of: oatmeal, coconut oil, almonds, brazil nuts, raspberries, blueberries, currents, prunes, raisins, cranberries, goji berry and one boiled egg.
I'm also wondering if the filler in T4 could cause a reaction or the slow release T3, which has Methocel E4M as the slow release component in it?
Could anyone with experience around this tell me if iodine or any particular food I've listed above can aggravate and create a goitre in particular?
Another thought I have is that with better FT3/FT4 blood levels, my body is perhaps working better than before creating a better/stronger immune response. If that's the case, then there is no point eliminating anything and I should just wait for the antibodies to kill the thyroid completely?
There are so many variables, eliminating each one one by one would take years, hence I'm asking here what is the most likely cause, which I could try to eliminate or change. Kind of going crazy over this as just as I feel like I figured out which meds to be on, this goitre business has come back!
Has anyone had similar experiences of a goitre returning years later? Any success stories there that could help?
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I think there's a very strong chance that it's the iodine causing this problem. It really is not recommended that hypos take iodine - especially not if you have Hashi's, because it can make it ten times worse - if not more. What, exactly, did your alternative doctor think the iodine was going to do for you? If your thyroid has been partially destroyed by Hashi's, you need less iodine, not more. And, apart from the iodine you get from your food, you are also getting it from your thyroid hormone replacement. You don't say how much NDT you're taking but 1 grain would give you approximately 30 mcg iodine. I doubt you need more on top.
Excess iodine can be very dangerous. It is also anti-thyroid, and used to be used to treat hyperthyroidism before anti-thyroid drugs were developed. If I were you, I would stop the iodine immediately, and see if that helps.
My doctor's view is that the iodine won't help with improving the thyroid glad itself, but is required for intracellular functions.
I've only started on the iodine for the last 3 days, but my goitre has been getting more frequent/worse over the last 6 months. I actually thought perhaps iodine would somehow help.
Well, I'm pretty certain it won't. And, I can't see any way in which it would help. But, is more than likely making things worse.
Besides, the loading test is not the right one to do. It's not reliable. And I've never seen any proof that iodine is necessary for any sort of intercellular functions. As I said, you are getting extra iodine from your NDT - how much are you taking? - and as your thyroid is no-longer making thyroid hormone, you need less iodine. And, without wishing to alarm you, I would add that, as you're worried about thyroid cancer, you should know that excess iodine can cause thyroid cancer.
Greygoose, I was taking NDT for a while when the goitre symptoms started again. I then switched to a mix of T4 and slow release T3. One of my theories was that the T3 in NDT was fast acting and at the end of the day it was low and that's why my goitre felt like it was worse in the evening - because the thyroid was trying to work hard causing it to swell. Now, with slow release T3 I don't think this theory is being proven. However, time may tell - I've only switched away from NDT 8 days ago. Does T4 or T3 meds give you any iodine?
However, it does seem like I should take the advice of SeasideSusie and take the non-loading urine iodine test (having been off iodine for 2 weeks). Based on the results I could make some further decisions about iodine.
My doctor was adamant that it is not only the thyroid that needs iodine, but the entire body does including intracellular function - in particular intracellular metabolism. I've been trying to google for such research, but I always come up with iodine with regards to thyroid gland itself and how it helps the synthesis of T4/T3. Unfortunately this doctor of mine has actually just retired and I can't contact her anymore. This iodine loading test was the last thing that did with her!
Anyway, thank you for answering. We'll see how I go with convincing my GP to issue me with another urine iodine test.
So, just finally, there isn't any particular food(s) that can promote a goitre in the list of my breakfast foods? (My other meals are much less picturesque).
One of my theories was that the T3 in NDT was fast acting and at the end of the day it was low and that's why my goitre felt like it was worse in the evening - because the thyroid was trying to work hard causing it to swell.
Presumably, you were on T4 only before the NDT, and didn't have any T3 except what you converted from T4. And, yet, your goitre went away? So, that theory doesn't really hold water, does it.
Besides, the T3 in the blood would be lower by the end of the day, certainly, but it doesn't do anything in the blood. It's what gets into the cells that counts and that doesn't lower throughout the day. That stays there for about three days, and as it's topped up every day, it wouldn't have that effect.
And, I doubt your thyroid would start working hard at the end of the day because your T3 in your blood was low, because the feed-back loop doesn't work that fast. It would take a few days to get the message to the thyroid to make it work faster, not a few hours.
Does T4 or T3 meds give you any iodine?
Of course. Iodine is one of the ingredients in thyroid hormone, that is why you need iodine (I've never seen anything that proves to me that it's needed elsewhere in the body). 100 mcg T4 contains 65 mcg iodine. 25 mcg contains 12.2 mcg iodine.
Every time a molecule of T4 is converted to T3 - or rT3 - 1 atom of iodine is released into the blood and is recycled. Same when T3/rT3 is converted to T2 and T2 to T1. All the iodine is recycled which is why you only need tiny amounts.
My doctor was adamant that it is not only the thyroid that needs iodine, but the entire body does including intracellular function - in particular intracellular metabolism.
Yes, I know they do. I've had experience with doctors like that. One of them prescribed me iodine and made me very, very ill. But, I've never found a doctor that can answer the question: why?
So, just finally, there isn't any particular food(s) that can promote a goitre in the list of my breakfast foods? (My other meals are much less picturesque).
Not as far as I know. I don't know of any foods that can promote goitres in someone on thyroid hormone replacement, with a very small thyroid. Are you sure it is a goitre? A goitre is a swollen thyroid, not something on a thyroid, as some people think. But, if you want to be really sure, change your breakfast completely, eliminating all those foods. Stay off them for three months, and then reintroduce them one by one and see what happens.
Thanks for those details! Yes, I'm increasingly getting convinced that iodine may not be what I need afterall. Perhaps then I could even go back to NDT as I went away from it mostly because I thought it started causing a goitre by the mechanism you've disproved for me. I'll keep going with my T4 + SR T3 for now though. See where it takes me.
I guess where does it leave me with my (what I think of as) goitre? The only thing left is that it is another Hashimoto's immunity attack on the thyroid and I might just have to ride it out. Do a scan to make sure it isn't cancerous and try to not to fixate on it too much and try to get all my other symptoms better with a good mix of T4/SRT3.
Also, just an aside, what's the view T4 + SRT3 vs NDT (or as I actually had it T4 + NDT as I thought my FT4 was quite low on NDT only)?
Your FT4 would be low on NDT, because of the T3. That's ok for some people, others need it higher. We're all different in our needs, and have to find what's best for us by trial and error.
My trials and errors led me to the conclusion that I couldn't tolerate any amount of T3. NDT made me quite ill, so I can't give an unbiased opinion on T4+T3 versus NDT. I am on T3 only. But, I would never take SRT3 because you can never be exactly sure of how much you're absorbing. Depending on the speed of your transit, the T3 could be evacuated before you've had a chance of absorbing it through the gut wall. You'd have to compare your dose with your FT3 levels to get an idea of how much you're absorbing. But, it isn't always a good idea.
Yes, a scan of your thyroid is very important, to see what's going on. Have you had one before? Do you have any idea of how much of your thyroid is left? When did you have your last blood test? That would tell you if you're having a Hashi's immune system attack. Seems to me that any intelligent doctor would have tested your FT4/3 levels immediately on seeing a goitre appear. Why did she test your iodine, anyway?
I also tried pure T3 and I didn't do well. Too many waves and too difficult to normalise. I felt anxious and weak. I tried for 6 months and gave up. Then I tried NDT. Didn't do that well either and also started getting the goitre so I corelated it to NDT. Then I started doing a mix of T4 and NDT to have a good "base" of FT4 as I theorised that is what I needed. At least with a base of T4 my jitterness, face numbness, heart palpitations, and anxiety have mostly gone away. Having goitre symptoms though has changed my course again and so that's where I am now with T4+SRT3.
I do regular FT4/3/TSH blood tests so we'll see how I'm going. I'm suspecting, as you've expressed, that perhaps I'm not absorbing as much of T3 as I was getting via my dose of NDT. I calculated I needed 15 mcg of T3, but in SRT3 terms that is probably lower, but that was my best guestimate and I'll keep it for 4 weeks until I test again and see what my symptoms and my bood work is like.
Just a note on blood testing. I have now switched to testing 12 hours after taking the thyroid hormones. So I take the hormones 1 hour before dinner the day before and test first thing in the morning. This is to make sure the blood levels of T3 are captured at a more average place rather than a full 24 hours after, which might show much lower levels. In my reading the half life of T3 seems to be between 6-10 hours.
It maybe I try this SRT3 business, I could try the non-SR T3 (still in conjunction with T4), but then I might as well go back to T4 + NDT. My doc was an avid proponent of NDT as she said it contains T4, T3, T2, T1, and calcitonin(from memory). So it potentially is more "natural" and gives the body things that modern medicine does not yet understand the effects of. The other thing is I could try
I have never done a scan for my goitre. I had it for a few months in the very beginning of all this. I did the Atkin's diet for 12 weeks to try to lower my body fat to try to get better muscle definition (I've always been skiny, but a little flabby). After that I got sick with some kind of virus that seemed to never go away and that's when I got diagnosed with being Hypo. Got the goitre, no energy, super depression - the works. But eventually the goitre went away so I never did have a scan for it. So now will be my first time to do the ultrasound, which my GP says is the first step in the process I have to go through.
Iodine test was my own initiative. I suggested to the (now retired) doc, "Hey, I haven't measured my iodine for a while, what's a good test to do in your opinion?". She knew my situation, so I hoped her advice would help. Now I'm thinking, perhaps, at least in this area, her advice wasn't quite the right one.
The half-life of T3 is 24 hours, and we always suggest testing 8 - 12 hours after the last dose. But, I do wonder if it being Slow Release doesn't mess levels up a bit. Do you ever get a really true reading? For T4, however, it should be 24 hours, otherwise you get a false high FT4.
I could try the non-SR T3 (still in conjunction with T4), but then I might as well go back to T4 + NDT.
Not really, no. T4 plus any sort of T3 is still more flexible than NDT, whether you add T4 or T3. It gets far more complicated. Plus, the fact that the hormone you get in NDT is bound, whereas with synthetic, it's unbound and more instantly available. It's said that the reason people with Hashi's sometimes don't get on with NDT is because it's bound.
My doc was an avid proponent of NDT as she said it contains T4, T3, T2, T1, and calcitonin(from memory).
Yes, a lot of people think that, but we have no proof just how true this is. The thyroid itself doesn't make much T2, and even less T1, most of it comes from conversion. And we're still very vague about what T2 and T1 actually do. Do they do anything? Or are they just stages in the recuperation of iodine? Calcitonin is also only a very small quantity - too small to measure, it would seem - at least on a commercial basis, otherwise it would tell you on the label how much it contained - and there are doubts as to whether it survives the processing that the pig thyroids go through to become a pill!
And, if there's one word in the English language I detest, it's 'natural'. People attach all sorts of values to the word 'natural' that it doesn't really posses. NDT is still highly processed and full of fillers, you can't make pills without fillers, so it's not as 'natural' as all that.
Iodine test was my own initiative.
OK Well, your ex doc didn't really know that much about thyroid, did she. None of them do. They just don't learn much about it in med school. You really have to be a patient, with a special interest in thyroid, to do the necessary research. In med school, they're taught that hypo is no big deal, and they learn nothing at all about Hashi's, so…
Really thorough explanations. Thank you for taking the time to educate me!
It is true, I found it difficult to fine-tune NDT dosages due to only certain divisions being available. Later, I started calculating the exact amount of T3 and T4. But it always seemed either too little or too much. Now I find out that T4 was unbound and NDT was bound - more complexity indeed! My regard for NDT has now dropped somewhat. It is hard letting go of old beliefs (those passed onto me by others for years!).
So just out of interest, on this forum, has there been more success with pure T3 vs SR T3 when used in combination with T4? I know you take pure T3, which is quite different to my case with the mix, hence the question.
Some doubts are creeping in for me now around SRT3. Such as, should I persevere with my T4 + SRT3 quest and get the bloods to a good level (together with symptoms hopefully)? Or should I abandon my SRT3 early and switch to pure T3? It's only been 8-9 days. I'm now doubting myself over your comments around SRT3 unreliable absorption. Does the absorption matter? Perhaps all that matters is getting to that good blood FT3 level, then it doesn't matter whether you get there with 25 mcg of SRT3 or 15 mcg of T3? (obviously carefully reassessing symptoms all the time, goes with out saying) But maybe not? Maybe getting all that T3 in the cells quickly as a huge wave is needed rather than drips and drabs of slowly released pieces of T3? I'm out of my depth here...
You have to accept it for what it is. What it is not is a universal cure-all. For those it suits, it's magic! But, it doesn't suit everyone - nothing does. Some people are perfectly find on levo mono-therapy. But there are an awful lot of combinations for the rest of us to experiment with, to find what suits us best. I've been experimenting for many years - right up to last year, when I finally decided that 75 mcg T3 was what was right for me, no more, no less. With absolutely no T4. But, it took me a long time to get to that point. Now, suddenly, I'm showing signs of under-medication… It is not a static disease. Our needs change. We have to be eternally vigilant.
But, it's true, there are those that swear that NDT is THE only way to go. I had a doctor like that, and I wasted a lot of years trying to make it work for me. It never did, and I had to drop both the doctor and the NDT!
So just out of interest, on this forum, has there been more success with pure T3 vs SR T3 when used in combination with T4?
Impossible to answer that question. People tend to talk less about what works for them and more about what doesn't. We have seen quite a few people on here having trouble with SRT3. But, I haven't seen anyone saying they do well on it. But, that doesn't mean there aren't any people doing well on it. We just don't have any statistics.
Some doubts are creeping in for me now around SRT3. Such as, should I persevere with my T4 + SRT3 quest and get the bloods to a good level (together with symptoms hopefully)?
I think it's too soon to tell. How much are you taking? What were your last blood test results? Have you had any blood tests on SRT3? Have you had any blood tests on normal T3? What were your results on NDT? We really don't have any of that sort of information from you, so anything I say is pure speculation.
Perhaps all that matters is getting to that good blood FT3 level, then it doesn't matter whether you get there with 25 mcg of SRT3 or 15 mcg of T3?
I think you're mixing your spoons, here, as the French would say. No, it doesn't matter if you get there with 25 mcg SRT3 or 15 mcg T3 - apart from the cost, maybe? But, the point about SRT3 is that you can't guarantee how much of that 25 mcg you are going to absorb through the gut, into the blood. And, it could vary from day to day, which is more to the point. To recover with T3, you need a steady, regular daily dose. Not 25 mcg one day and 20 the next.
Maybe getting all that T3 in the cells quickly as a huge wave is needed rather than drips and drabs of slowly released pieces of T3?
Yes, getting it into the cells is the point of the exercise. But, first it has to get into the blood. And, not all the T3 that gets into the blood will get into the cells. But, it's true that some people do need the huge wave rather than the dribs and drabs, if they have some level of hormone resistance. Others are fine with dribs and drabs, because that's the way they would get it if all other things were equal and their thyroid was working 100%.
For myself, I need that large 75 mcg T3 all in one go, to saturate the receptors. Dribs and drabs don't work for me. But, do you know what works for you? You'll only know by experimenting. At the moment, you're taking the dribs and drabs, but you've only been doing it for 8/9 days. That's not long enough to know if it's going to work. I think maybe you should give it a bit longer. Or, move on to the same amount of normal T3, but split it into several doses throughout the day - always making sure, of course, that you take it well away from food/supplements/other medication. That might give you a better idea if the dribs and drabs work for you, or if you need the huge wave.
I've been thinking about it and I'll give it another 3 weeks on SRT3 and do the blood test. Based on the test and symptoms I could decide what to do next. I could either switch to the same amount of pure T3, give it a month and compare.
Just another point for me is that although I said I've tried T3, it was SRT3, not pure T3. It would be hard for me to try it though as I'd have to drain all that T4 and from memory it's a painful process. I'll leave this option to last if all else fails. But I will keep it in the toolbox. Are there many like you using the large wave of pure T3 only and successfully? My doctor was saying it was one in a million case and I shouldn't try it. Heh my doctor has now lost some credibility though...
I'm not sure you're giving things long enough. You should wait at least six weeks before testing, to give doses time to settle.
Just another point for me is that although I said I've tried T3, it was SRT3, not pure T3. It would be hard for me to try it though as I'd have to drain all that T4 and from memory it's a painful process.
Not sure what you mean, there. Drain T4? Why? I went onto T3 only from NDT, and just did a straight swop, I didn't wait for the T4 to get out of my system.
Are there many like you using the large wave of pure T3 only and successfully? My doctor was saying it was one in a million case and I shouldn't try it.
I think your doctor is exaggerating a bit, there! lol What's more, I don't see how she would know. I doubt there has ever been a census of any proportion. There are other people on here on T3 only - some taking a lot more than me! But, I couldn't tell you how many. Not as many as on T4 only, obviously, but how many people even get the chance to try? Or even think about it? And very few doctors would ever suggest it, or even condone it. I think we should be free to try everything until we find what suits us, but so many doctors feel out of their depth when dealing with T3, even in conjunction with T4.
If you do a straight swap, then wouldn't you be massively overdosing on T3 as you get some from the T4 conversion? I thought you gradually increae T3 whilst the FT4 drains away (3-4 half lives should be enough before switching to full dose of T3). The tricky part is knowing what size the incremental increases should be. Also, if you are on pure T3, aside from symptoms, what do you look for in the blood tests? (I'm just taking notes here for if I ever do the pure T3 only protocol.)
Interesting you say to wait 6 weeks to wait before testing. I thought that was true for T4 with a 7-10 day half life, but T3's half life is near 10 times less, so I thought the accumulation and settling time would be a lot less, like a week should be enough, certainly 2 weeks, but 4 weeks should be solid (provided T4 stays constant, which it is for me) . Or am I missing something? I thought that was one of the big pluses of T3 - fast feedback time both in bloods and symptoms. I wouldn't want to be suffering on the wrong dose for longer than I really need to...
Well, I did the swop a long time ago, when I didn't know all that much about it all. And, even if I had known more, it would have been complicated going from NDT to T3. But, I think one of the reasons I didn't get on with NDT was that there wasn't enough T3 in it for me. And, even after the swop I needed to continue increasing the T3. So, no, it wasn't a problem for me, but that is just me. What you are suggesting is more logical, slowly increasing the T3 and decreasing the T4. I thought, though, that what you were suggesting was stopping the T4 for a while until it cleared your system, which would be much harder.
Also, if you are on pure T3, aside from symptoms, what do you look for in the blood tests?
If you are taking non SRT3, blood tests aren't that helpful. Blood tests were designed for people on levo only. I haven't had a blood test since 2014. You need to know your own body very well, and just go by how you feel. As you've probably guessed, I'm self-treating, because it would be very difficult to get a doctor to agree to my regime!
Interesting you say to wait 6 weeks to wait before testing. I thought that was true for T4 with a 7-10 day half life, but T3's half life is near 10 times less, so I thought the accumulation and settling time would be a lot less, like a week should be enough,
It takes the body at least six weeks to adjust to any dose change, whether it be T4 or T3. It's not to do with half-life, but how the body handles the hormone.
I thought that was one of the big pluses of T3 - fast feedback time both in bloods and symptoms.
Yes, a lot of people think that, but nothing is fast where hormones are concerned. Bloods only do what they say: tell you how much is in the blood. But, it doesn't do anything in the blood, it only gives you results when it gets into the cells - or not, as the case may be. So, for symptoms, you do need to give it a good six weeks to see how things are panning out. And, not much point in doing bloods if you don't have the feelings to go with them. How you feel is, after all, far more important than your blood results. Especially where T3 is concerned. What would be interesting in your case, with SRT3, is to get a rough idea how much is being absorbed.
I wouldn't want to be suffering on the wrong dose for longer than I really need to...
Of course not. But, then, if you're suffering, you obviously need to increase the dose, whatever the bloods say. And, with T3 you can increase by 5/6.25 mcg every two weeks until you feel better. But, as far as bloods are concerned, it's best to wait for six weeks on the same dose before doing them.
It takes the body at least six weeks to adjust to any dose change, whether it be T4 or T3. It's not to do with half-life, but how the body handles the hormone.
Interesting. I'll take that on board. According to this I have been too hesitant in the past. I'll try to stick to 6 weeks from now on. With T3, as you say, if I feel under medicated I could add T3 every two weeks based on symptoms and retest after 6 weeks of last dose change.
One reason I tried T3 only (albeit slow release version) in the past was because I have a strange thing of my pulse and temperature not going up as I increase T3 beyond a certain point. It's not just the pulse, my other symptoms also don't quite go to normal, but pulse is just an easy thing to measure. I kind of gave up on the temperature, but my pulse just doesn't go up over 60 bpm even when FT3 is over the range. Instead, what I've been experiencing is anxiety, jitterness, shortness of breath. I finally now understand those as signs of overdosing.
My pulse does fall lower when my results are lower. Lowest recorded was around 33 bpm when I was quite unwell with TSH ~100+. The troubling thing is I can't use the normal symptom guidance of "Stop increasing your T3/T4 dose if your pulse goes over 80 (or in some advice 100) bpm". Ideally I'd like mine to be 70-75 bpm and I feel like that's the divide those extra 10-15 bpm (~20%) that translates for my physical and mental symptoms. I'm not falling apart, I'm functioning. But at my "best" I'm still at least 20% worse than my 100% should be. It's a weird thing this pulse cap/max. I'd love to take something that would increase my pulse to 70, 80, 90 to even feel what it's like. Other than during exercise I haven't been over 55-60 bpm for the last decade. And it's probably one of the reasons I love exercising to just feel my metabolism rev up at least for a short while. Unfortunately, I can't exercise endlessly throughout the day/life (poor fitness/endurance/recovery from hypo, besides not being a practical in today's society)!
Could this be my thyroid receptors being "clogged" as my ex doc used to say? (She did prescribed me some heavy metal detox meds. I still have some, but stashed it until I get the thyroid dosage at least roughly correct.) Perhaps my receptors don't let more than a certain maximum of T3 in and the remainder T3 just make me feel ill/toxic somehow? Would pure T3 (at least some of it in combination with T4) as one morning "wave" help to force it inside the cells despite the defective receptors? I think the cellular level is where my real issue is. I'm not a straightforward hypo case where more meds slowly take me from hypo to normal to hyper. I go from hypo to slightly better (but well short of normal) to not even hyper, it's more like just experiencing side effects.
It will be hard to find a new (good) doctor where I am (New Zealand). The doctor I had (although misinformed) was at least open to trying various things I proposed and weighing in with her own advice. Now that's gone and it will be hard for me to do T3 only. I can see even my GP is way out of his depth with T4 + SRT3. I had to tell him where to order SRT3 - he didn't even know you could get it in New Zealand!
I'm rambling on, but it feels oddly good to get these theories/questions/complaints off my chest. Thank you for still reading answering me - much appreciated.
Instead, what I've been experiencing is anxiety, jitterness, shortness of breath. I finally now understand those as signs of overdosing.
Shortness of breath and anxiety can just as easily be symptoms of under-medication. Jitters can be to do with cortisol. Examples of why you need to know your body and it's reactions very, very well.
My pulse and heart rate don't change, either. But, now I'm adequately treated, my blood pressure has come down.
I'm not falling apart, I'm functioning. But at my "best" I'm still at least 20% worse than my 100% should be.
Some people never do get back to 100%, I'm afraid. You just have to be the best you can.
Could this be my thyroid receptors being "clogged" as my ex doc used to say?
As far as I know, receptors don't get 'clogged'. What would be clogging them? She really did have some very weird ideas.
Perhaps my receptors don't let more than a certain maximum of T3 in and the remainder T3 just make me feel ill/toxic somehow?
It is possible to have thyroid hormone resistance. That would mean that although your serum FT3 levels look good, you still feel hypo. However, 'the remainder' would not, in any way, make you feel ill or toxic. It would just stay in the blood until it was excreted, and in the blood it doesn't do anything. It's only when it gets into the cells that it is active, so it would be lack of thyroid hormone in the cells making you feel bad, not the T3 in the blood.
Would pure T3 (at least some of it in combination with T4) as one morning "wave" help to force it inside the cells despite the defective receptors?
That's what I said in a previous response: you might need to flood/saturate the receptors to force more hormone into the cells.
It's difficult anywhere in the world to find a good, knowledgeable, open-minded doctor. It's a universal problem. We all know from reading on here how difficult it is in the UK and the USA. Here in France, it's difficult, too. I've seen so many doctors in my search for one that could help me - I even saw our leading hormone specialist in Paris, but found even he had gaps in his knowledge/understanding, and he was streets ahead of all the rest! And, talking to Germans, Italians, Spaniards, Danes and Dutchmen, etc. etc. etc. I find they all have the same problems with ignorant doctors. Although there might be slightly more hope in Greece? There's just Dr Hertogh in Belgium that has any real inkling of what it's all about, but even his disciples revert to type once they go out on their own. His message just doesn't seem to stick. And, in the UK there was only Dr Skinner (deceased) and Dr Peatfield (retired) with a good grasp of the subject and the humanity to practice what they knew, and they don't seem to have had any disciples. So, that would seem to be that. I really don't know what help there is for any of us - apart from forums like this, and self-treating. Is that an option in NZ?
Right, I guess I will see if I need to, at least partly, flood the cell receptors with T3 if my SRT3 is not effective.
It's interesting your pulse doesn't change either, I wonder what category that puts us in.
In New Zealand medications are highly regulated, more so than in some other countries I think. There is far less over the counter med available / allowed. Definitely any hormonal medication made here or imported must be prescribed by a qualified practitioner. So I can't, for example, order T3 from another country and self treat. My only hope is to coax my GP or to find some alternative doctor to support my quest. Pure T3 treatment without blood tests would not be possible with my GP for sure.
The other thing about New Zealand, especially the region I'm in, is that has low population. 5 million in NZ and 0.5 million where I am. So there are proportionally less doctors. If UK with its 60 mln population, has less than a handful capable thyroid docs, New Zealand's chances of having one are pretty slim statistically at least.
Thanks for all your invaluable advise for now. I'll take it on board and see how I go with T4+SRT3 for now, perhaps switching to T4+pure T3 later. I may pop up on this forum again (but I sincerely hope not as I'd be totally well).
Yes, it's pretty strict here in France, too. They say it's for our 'protection', but it feels more like punishment for daring to be sick! But, you never know where the odd knowledgeable maverick is going to pop up - not always in the most densely populated areas - so don't give up the search! Just be away that because they say they know what they're doing, doesn't mean they do. Always double check anything they tell you.
Ah, forgot one thing that I meant to ask: with SR T3, how many hours do you leave between intake and blood test? Perhaps it's best to actually leave the full 24 hours like for T4 as it keeps getting released throughout the day and later might be more accurate than 8-12 hours like for pure T3?
That's a very good question. And, to be honest, I don't have an answer. Never thought about it before because very few people take SRT3. I would suggest you write a new post, asking just that. Then, those that actually take it, can give their experiences.
I take NDT but some can’t manage it. Have you had your VIT D, B12, folate and ferritin tested? These help your Thyroid work much better if they are optimal. I would look into that first. Many of us need to supplement but it’s not an overnight fix but it can take a considerably long time if seceral things need addressing. It you take Vit D you also need to take the co factors.
I needed to do this as my conversion wasn’t good and it completely reversed that but I generally felt better all round as well. Some people also struggle to take any form of T3 unless these are addresses first. So always a good place to start.
Can you post your results from your last bloods on NDT-you may not be taking enough?
Thanks silverfox7 for pointing this out, but I have gone through that journey (thanks to this forum) and got my Vit D, B12, Iron panel all to around optimal. Unfortunately I did not see much improvement there.
I do have quite a few test results through the years. As in the discussion with Greygoose (above), NDT was hard to manage and may not be for me anyway. So I won't post any results here. Maybe in another post if further questions arise. Thanks for the offer though!
I realise that is promoting their own test, but the article makes sense and you can do a non-loading iodine test with Genova Diagnostics who describe it as
Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
True. My urine iodine was a loading test, but yes, I guess I could stop the iodine for 2 weeks and try it. Something to verify (or dispute) the loading test. Thank you!
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