How long for symptom relief on NDT?

Hi All,

My question is for those who are on or have tried NDT (or even Synthetic T3/T4 combos) – how long did it take before you saw symptom relief once your labs were optimal? Especially in the weight department.

I'm on 75mcgs Levoxyl + 2 Grains WP Thyroid. Here are my latest labs:

TSH 0.73 (0.5 – 4.8)

FT4 1.25 (0.82 – 1.77)

FT3 3.5 (2.0 – 4.4)

My doctor really liked these results. Indeed, they are some of the best results I've ever had ON PAPER. FT3 could be a tiny bit higher, but FT4 is right smack in the middle of the range. Unfortunately, I've gained ANOTHER 7 pounds in the last few months since I've been on this medicine combo! My energy is also pretty low. I'm scratching my head, as is my doctor – I should be feeling better and losing some weight with these labs, not gaining!

Do I just have to stick with it and hope (with diet and exercise) that the weight will come back down?

Thanks,

Hypoguy

64 Replies

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  • What is considered a normal range of all 3 tests?

  • From what I'm told, TSH is pretty useless once on replacement hormone. My doctor wants to aim for FT4 at about the middle of the range, and FT3 at around 75% of the range or higher. So my labs are pretty darn close to "optimum" – which is why I'm curious if symptom relief usually lags behind labs.

  • Hypoguy,

    Your results are wonderful and yes you are right.....Symptoms can lag behind good biochemistry for up to 6- 8 weeks.

    You are lucky to have a doctor who sounds so very knowledgable.

    The effects of your good hormone balance will eventually show. Sometimes the improvement is as insidious as the decline until you wake one morning and realise how well you feel... ! ! !..

    Having found the right combo/dose, if this were me, I would now concentrate on nutrition, and supplements to put the cherry on the top and keep these results going.

    Good luck

    Flower

  • Thanks for your response Flower007 – I hope you're right about symptoms improvement lagging behind. Especially with these nice labs.

    I'm at a loss with this weight gain though. It seems to have come on with the introduction of the WP Thyroid and/or T3. 7 more pounds in about two months. Really hoping that I can drop it, because I'm not fitting into any of my clothes!

    I am definitely working on diet, supplements, and exercise. I'm terrified that I'll keep gaining weight though.

  • I lost weight when starting on T3 as others have reported too so am surprised you are still gaining.

    However remember symtoms do lag behind & we are all different......so you might see a change over the next few weeks. You may even find your T3 level goes up abit more too over the next few weeks as a perfect dose will encourage even better conversion .

    Do not try to diet or your bodies response might be to hang onto the fat even more.

    I eat a healthy diet of carbs, fat and with protein at every meal... be it meat, fish, eggs, cheese, nuts, beans, quinoa, yogurt, any form of protein which will fill you up, keep you full and balance blood sugar levels.

    I have cut gluten and processed sugar right out of my diet completely but still have natural sugars in fruit, etc.

    I'm sure your weight loss will come in time with those results.

    Flower

  • Labs differ in the ranges because they use different machines and many GPs are happy when we are 'within range' but regarding the TSH most of us feel better when its around 1 or below or suppressed and for FT4 and FT3 towards the upper part of the range. Many doctors don't like suppressed and then the adjustment of dose begins with the result the patient is on a roller-coaster.

  • Blood tests don't inform on how the patient is feeling. Do they feel well with good health and relief of all symptoms? That's when you know the dose you are taking is optimum and weight should gradually diminish.

    web.archive.org/web/2010103...

    web.archive.org/web/2010103...

  • I know a lot of people say it takes 6-8 weeks to feel an improvement after a dose change but in my experience it's much slower than that. I started taking T3 in addition to T4 in June and I'd say it was only in the past week or two I've started to feel 'normal' again. And before June I'd been on a TSH-suppressing dose of T4-only for months. It can be an almost imperceptibly slow process...

    Unfortunately I never really experienced much weight gain as a symptom so I can't make any suggestions there.

  • It's not just the fact of taking WP Thyroid that is suddenly, miraculously going to make your symptoms go away and the weight drop off. It's taking enough. And I wouldn't say you're taking enough. Your doctor may like these results, but he doesn't have to live with them, does he. And they may be the best results you've ever had, but that doesn't make them perfect - only better than last time. You need to keep going up.

    So, how long have you been taking this dose? When were these labs done? Your FT4 is just that tiniest bit short of mid-range - could be a lot higher. Your FT3 is only just scraping past mid-range - could be a lot higher, too. And if you're still having symptoms and gaining weight, then you, personally, obviously need them higher. You need the dose you need, not the dose your doctor thinks you ought to need.

    Why are you taking Levoxyl and WP? Why not put the WP up to 3 grains and cut out the WP? That way you'd get more straight T3. There's not much T3 in two grains.

    Also, for your body to be able to use the hormone you're giving it, certain things need to be optimal : Cortisol, vit D, vit B12, folate, iron and ferritin. Have you had any of these tested yet?

    The last thing you need at the moment - with that FT3 - is a low calorie diet and exercise. They won't help and may make things worse. You need calories to be able to convert, cut the calories and you cut the conversion. Besides, hypo weight-gain has nothing to do with what you eat.

    And exercise uses up your T3 at an alarming rate. So, no more than a bit of walking and a little swimming to keep yourself mobile, or you will make things worse. It is a well-known fact that hypos can diet and exercise themselves fat! :)

  • Thank you for your input! I have only been on this combo of Levoxyl and WP Thyroid for three weeks – the doctor asked for labs early because of the weight issue. So the numbers could certainly change over the next three weeks. Perhaps things will improve.

    Before this, I tried 3 Grains of WP Thyroid (without Levoxyl) and it didn't work for me. I became extremely tired and depressed. I actually think the weight gain happened there. The WP Thyroid could be the piece that is causing problems, but I want to give it some more time to be sure.

    I'm waiting on my Cortisol results, but my Vitamin D and Ferritin were both very good last time they were checked (less than six months ago). Haven't tested vit B12, folate, or iron before.

    I'm not doing any crazy dieting or exercise, just basic stuff to get back in the swing of things. I'm focussing on eating healthy and moving a bit more.

  • Yes, it's better to count nutrients than calories!

    OK, so yes, it could be the WP that doesn't agree with you. Or, it could even be the Levoxyl. There are so many combinations we can take, and so many things that can make us worse. I tried so many different combinations before finding that I do best on T3 only - I cannot tolerate T4 in any shape of form. But, it's all trial and error, I'm afraid. Nobody can know in advance what or how much they're going to need.

    You could have put on weight on 3 grains because it wasn't enough - well, it's still possible you aren't taking enough. I put on a hell of a lot of weight on NDT, and I tried most of them. It's only a high dose of T3 only that has allowed me to lose a lot of it.

    But, keep on keeping on! lol Good luck.

  • Forgot to say, most important to get your B12 tested! Low B12 symptoms resemble very closely those of low thyroid. But worse, because Under 500, irreversable neurological damage can be done. Doctors will say your level is OK if it's just at the bottom of the range, but anything Under 500 needs instant supplementation - if it's right at the bottom of the range you need to test for Pernicious Anemia. Optimal is 1000.

    Doctors have no idea how important B12 is. One of my many doctors told me it was of no significance! Well, he was wrong. So, please do get it tested. Most hypos have low B12.

  • I'm really beginning to think that this NDT / T4 combo just isn't for me. If I look back to when I was on T4 only – sure I had symptoms, but I was 15lbs lighter as recently as the first of the year. That's considerable. It hasn't been until I switched to this new medicine combo that I gained more and more weight. I'm at a loss, as is everyone I try to talk to about it. Better numbers on labs, but the scale has climbed. I know I need to give it some more time, but it doesn't seem normal for weight to climb this drastically with a new med. I'm terrified that I'm going to continue to gain the more time I'm on it.

    There's always the chance that I go back to T4 only, and still have weight issues – but it would be a pretty easy thing to test. But at least there's history where I was a healthy weight on it. It's frustrating, because in a lot of ways I feel better now. No headaches. Fewer body aches etc.

    I was on Synthroid for years at 195. I maintained that weight. Now I'm 230. Something happened. I might ask the doctor if I could try 150mcgs of Levoxyl. That's the last dose level I was on with Synthroid.

    Are there issues going from an NDT / T4 combo back to T4 only?

  • Also, I wanted to ask about your T3 only – was it a difficult transition? Did you do it over time, or did you start with an "equivalent" dose?

  • Well, it's too soon to say that it isn't for you. You've got to give it a fair try. You've only been on it for 3 weeks, that's no time at all, in thyroid terms. At least give it the full six weeks and then go and get tested. See where you are, how you feel. Then make adjustments accordingly. If you keep jumping from treatment to treatment, you're going to screw up your metabolism. Give it a little more time.

    To be honest, I can't remember much about my transition. For one thing, I was too ill. But I was on NDT only. What happened was, I was convinced I had rT3, but no chance of testing it here in France. So, I got some T3 and put myself straight on to 125 mcg - from 6 grains NDT. I stuck at it for about 12 weeks, and didn't feel too bad. But when I went back onto the NDT, thinking my rT3 must be cleared by then, I started to feel worse again. Then, the NDT I'd ordered didn't arrive - the company I'd ordered it from (not for the first time) just disappeared, and a lot of people lost their money! And then I ran out. So, in desperation, I just went back to the T3 I had, and gradually realised that I felt better on it than I did on NDT.

    That was long before I found this forum, so if that company hadn't gone bust, I might be dead by now! Or a bed-bound vegetable. It all happened by chance. But, I wouldn't recommend the process to anyone else! lol

    However, I have to stress that I didn't start losing weight until I sorted out my adrenals and my nutritional deficiencies. It isn't just about T3. :)

  • Thanks for the info! I will give it more time. The doctor and I agreed that I should give it at least 6 weeks, and preferably 8 weeks – and I will. I just hope that the weight doesn't continue to climb in that time. If it does, I think that's a pretty clear indication that it isn't working for me. I do think I've bounced around in my treatment too much over the last year, and that probably led to my metabolism being messed up. Hopefully if I give the treatment some time, it'll start to reverse the problem. Not sure how long that'll take though, and I just hope that this treatment is going in the right direction.

    We read so many glowing reports of T3 and NDT online, and I got my hopes up that it would be the magical missing piece of the puzzle. That hasn't been the case so far, and it makes sense that it wouldn't be so simple. It's a balance of many different things that make us feel well, and that balance seems to be different for everyone.

  • Keep up with it and in time it will improve. I know the weight is the hardest to deal with as I have badly suffered with that too!! I can sympathise totally....

  • Sorry to reply again but I just found some Ferritin and Iron tests from 03/18/2014:

    Ferritin 130 20-345 ng/mL

    Total Iron 69 45-175 mcg/dL

    TIBC 278 250-425 mcg/dL

    My Ferritin looked good, but is that Total Iron result too low?

  • Is this definitely true that diet and exercise can make hypos fat? I've struggled with my weight for over 40 years, having a will of iron to stop myself eating, and reading your reply think this might have made matters worse.

    Is it a fact or is it common belief based on experience? If it's a fact it would be worth asking GPs to spread the knowledge.

    Penny

  • It is fact. Although I Don't have any links to give you, I've read it in many, many different places. Mary Shomon talks about it. I think it's even on STTM.

    And, of course, I have experienced it myself. But what do you mean by 'stopping' yourself eating? How much were you eating? You must have eaten something. Did you go 'low fat'? Because that won't have helped. We need our fat! Which is one of the things that points to calorie counting being a load of rubbish, anyway. For everyone.

    But I wouldn't waste my time on GPs if I were you. They know nothing about nutrition/weight/or even hypo! And it's also a fact that if you put on weight they are just going to tell you that it's your fault and you should eat less and exercise more! They'd far rather blame the patient for everything than look for the real cause. Unless, of course, you have an exceptional doctor...

  • Thanks for this Greygoose.

    Can't imagine this is of interest but by 'stopping' I mean in the past, as a teenager embarrassed by weight gain, not allowing myself anything other than water, black tea or black coffee, with no sugar for periods as long as a week. (And before anyone assumes it, though I think on this site we are all more understanding, no, I did not then binge).

    I followed that with all sorts of diets from GPs, weight watchers etc only to be blamed, just exactly as you said, by people saying I must be cheating since I didn't lose weight.

    Have always controlled what I eat in terms of keeping low fat, low calorie and attempting low carb but I eat a lot of fruit which is high in carbs.

    So that's what I mean and now it sounds as if this has been the wrong thing to do.

    BTW I'm a vegan so there isn't a lot of choice.

    Please all excuse the boring post!

  • I wouldn't dream of assuming that you went on to binge! As you said, people are more understanding about weight on here - although even here, not everyone gets it. But I certainly do. I was a fat child and a fat teenager. In adulthood, my weight went up and down with no relation to what I was eating. Although the doctor once put me on a liquid diet of 800 calories a day for 11 days, and I put on three kilos! And she refused to believe I hadn't cheated. Those were a pretty awful 11 days and all for nothing! Worse than nothing.

    So, doctors certainly Don't get it! They're always putting people on diets although the know absolutely nothing about nutrition. Low fat is definately the wrong thing to do, but that is the first thing they'll tell you : cut out the fat! Been there, done that.

    Sugar, of course, is the best thing to cut out. But have a look at this :

    healthunlocked.com/thyroidu...

    However, there is one member on here that knows far more about nutrition than I. I'm sure she won't mind me mentioning her : 1133. If you click on this link and scroll down, you will find one of her posts :

    healthunlocked.com/thyroidu...

    It's long, but stick with it. She explains things very well.

    But your post isn't boring at all. And I hope this little discussion will help a lot of other people that are in the same position.

    Take care. x

  • Greygoose and Heloise, thank-you both, you might have just made a great change to my life ... as well as hypothyroid I have ME which I recently discovered affects glucose uptake in tissues.

    Putting that info together with yours maybe I can now begin to recover.

    I gave up sugar and foods containing sugar, other than naturally occurring fruit sugars, at 16, I do hope that was a good thing to do and not a contributory factor.

    What are VLCC/ketogenic diets?

    A thought, conjecture, just in case this is of interest to others, I am a yoga teacher and notice that when I teach the dynamic poses that increase metabolism I feel energized but when I teach sustained poses that build stamina and strength, I feel weak and tired sometimes for days afterwards.

    Maybe the metabolism-increasing dynamic poses are influencing glucose uptake? Or something.

    Many thanks to you all, so good to hear your experiences and it's remarkable how very cheerful so many of you are.

  • Well, I really do hope that does help.

    VLCC is a Very Low Calorie Count diet, I do believe. A ketogenic diet is low calorie and something speeds up fat burning. Something like the Paleo diet. But I could be wrong! Please someone correct me if I am.

    Giving up sugar was the right thing to do, yes.

    So, you're a yoga teacher. You should talk to Marz. She teaches yoga, too. I Don't know anything about it. I can't do anything that involves lying on the floor! lol

  • This is a wonderful interview: thyroid-info.com/articles/r...

    Dr. Ray Peat: The amount of glucose in liver cells regulates the enzyme that converts T4 to T3. This means that hypoglycemia or diabetes (in which glucose doesn't enter cells efficiently) will cause hypothyroidism, when T4 can't be converted into T3. When a person is fasting, at first the liver's glycogen stores will provide glucose to maintain T3 production. When the glycogen is depleted, the body resorts to the dissolution of tissue to provide energy. The mobilized fatty acids interfere with the use of glucose, and certain amino acids suppress the thyroid gland. Eating carbohydrate (especially fruits) can allow the liver to resume its production of T3.

  • Huge thanks Heloise.

  • Very welcome, thyr01d, look up the Atkins Diet. It's a diet that is effective and probably could be called ketogenic. With no carbs and just fat, you are in a state of ketosis.

  • Thanks Heloise

  • You are welcome. About the ketos......Dr. Atkins had the so called Atkins diet.....no carbs, high fat. The body prefers fat as fuel. Without carbs, eventually you go into a state of ketosis and burns stored fat.

  • I have an update: I gained another 5 pounds in bloat over the last week. It's ridiculous – obviously something is wrong. In frustration, I didn't take the WP Thyroid today. I instead took the full equivalent dose in Levoxyl only. 150mcgs. I know this wasn't necessarily smart, but I feel so gross and sick. I did it as an experiment more than anything...

    The difference has been dramatic, and immediate. NO BLOAT. Pardon the details, but I have been peeing all morning. I'm already down six pounds from yesterday! Something in the WP Thyroid does not agree with my body, which has been causing the fluid retention. That's pretty clear now.

    I know this isn't a permanent fix. I think I could slip back to not feeling well without some added T3, but I can't tell you how drastic the difference is.

    Now I need to plan what to do with this information. What are your thoughts? Am I an idiot for doing this? I was just listening to my body.

  • No, not at all! We have to try things for ourselves, as doctors sure aren't going to do it! And the results Don't altogether surprise me.

    So, do you have any T3 to hand? Will your doctor prescribe it? Sounds like it wouldn't really be a good idea to go back on the WP. But if you have to buy the T3 yourself, it might take a while to get to you. So, stay on the Levo, at the same dose, until you can get some. Then you will have an idea how Levo is agreeing with you now, and whether or not you want to add some T3, or go T3 only.

    I'm so glad to hear that you're feeling better, and more confident about the future. And please Don't worry about the gory détails! We're used to it! lol

  • Thanks greygoose. The bloating has stayed off today as well. I have a headache and some more aches and pains than usual, but that's probably because the T3 is gone. I'll stay on the Levo-only for a bit, and look into getting some T3.

    This same bloating and fluid retention happened when I tried Cytomel as well (over a year ago). I'm beginning to think my body just doesn't like supplemented T3 – even though my labs point to a bit of a conversion issue. Something to investigate further. For now, I'm just happy to be able to breathe and fit in my clothes again!

  • Your body wouldn't know if it likes it or not, it's never had enough of it to find out. Not judging by what you've told us so far, anyway. But, if you have trouble with Cytomel, it could be due to the fillers - could be that with the WP, too.

    Or, maybe your cortisol is low - have we talked about cortisol yet?

    Another factor that I was reminded of the other day, is that you could have low growth hormone - HGH. HGH is a vicious circle, because you need T3 for the pituitary to produce it, but you need HGH to convert T4 to T3. So, the only solution there is to take straight T3 until - hopefully - you can get your conversion working again. I do think that might be part of my problem. I think I really ought to have my pituitary investigated, but I've yet to meet a doctor here in France that knows where it is! So, I'll just stay on the T3 and HC, I suppose. But perhaps it would be Worth you checking out your pituitary.

    Anyway, glad to hear you're still unbloated. :)

  • 3 weeks is no time at all, you really must hang in there a few more weeks and then try upping slightly hold that for a few weeks. There is a great document on TPAUKS website, sorry on iPad so can't manage links, that clearly explains how and why to increase NDT diesel. If you don't know their site Google them and gave a search.

  • Why would I GAIN weight while starting this combo though? Nothing else changed. Seems strange to have to gain more weight before losing it once things even out.

  • Because your T3 is too low. What was it when you were on T4 only, do you know?

  • My T3 always hovered around 3.2 when I was on T4 only. It ranged from 3.0 to 3.4

    It's interesting – looking back, my FT4 was usually around 1.5 or 1.6, and my FT3 was around 3.2 when I felt best. Those were my results when I was at a healthy weight on T4 only. Maintained a healthy weight on 125mcgs Synthroid for 4 years. Strange. Doesn't fit the "midrange or higher" for optimal labs that I always see online.

    Something changed starting early 2014. It seemed like the 125mcgs wasn't working as well anymore. Increases didn't seem to do much – my FT4 just got higher and higher, but FT3 didn't really budge. That's why the doctor thought I had a conversion issue, which led me down the T3 and NDT paths.

    I think something about T3 makes me bloated and retain water. Again, the weight didn't start to pack on until I started adding T3 to the mix. But no one seems to buy that. I'm so confused. I hope I'm wrong, because I'm invested at this point.

  • OK, so given that you doctor thought you weren't converting, why the hell did he put you on NDT PLUS T4? That just doesn't make any sense. Unconverted T4 is just going to hang around in the blood and cause problems. You are now on more that 125 mcg T4, plus the approx 18 mcg T3. If you are not converting, that means that you Don't have enough T3 to live on. But a lot of unconverted T4 sloshing around in the blood.

    BUT, I Don't see all that much evidence of a conversion problem in the results you've given. Your FT4 has gone down, as we would expect, and your FT3 has gone up. Just not much, making you look Under-medicated.

    So, it would appear to be the NDT that is at fault. I Don't think it's the T3 per se. More likely to be one of the fillers in the NDT.

    However, do you have Hashi's? I Don't remember having seen that mentioned at all, and that could change everything. It could explain difficulty converting, and why the 125 T4 appeared to stop working.

    How and when do you take your hormone? Do you take it an hour before food - and any drink except water - or two hours after? And four hours away from any other medication? Do you take it with vit C to increase absorption? Do you leave 24 hours between your last dose and the blood test? Do you have the test early in the morning, before breakfast? Are you taking any other médications that could affect absorption?

    So, what are your options now? Your ferritin looks OK, but you really must get the B12 and D checked. Will your doctor check your cortisol? Because if that's off, it will make you put on weight.

    Wait until the 6/8 weeks are up and get tested, see what your levels are then, and then make a decision about what to take. You could try a different brand of NDT - there are several out there. You could try NDT alone, or with a little T3 added. You could try going back to T4 only but add a little T3. Or you could try T3 only.

    I know that NDT is touted as the only way to go, but it isn't. And it's very wrong of people to say it is, because it doesn't suit everyone. It certainly didn't suit me. I put on an incredible amount of weight in the years I was on various brands of NDT. I stuck at it longer than I should have because people continually went on about giving it time - including my doctor who couldn't accept that it didn't suit me. I should have given up long before I did, but there you go. So, I would say, give it time. But not so much time that it destroys your life!

    The good news is, as I've said before, that the weight did come off. I Don't pretend to be skinny now, but at least I can walk into a normal shop and buy some clothes. I no-longer have to shop at rent-a-tent! And I'm sure it will for you when you get onto the right brand/dose. So, Don't get too hung up on that aspect of things. Just remember that nothing happens very fast in the thyroid world. But, like the tortoise, we get there in the end. :)

  • Thank you so much for all the info greygoose! So helpful. Here are the answers to your questions:

    I have no idea why the doctor put me on NDT + T4 if there was evidence of conversion issues. He said that the ratio of T4 to T3 in NDT is too high (in T3). I was told I don't have Hashi's – I'll post those results below when I find them. I do take my hormone first thing in the morning, with water and Vit C. I wait at least an hour to eat. I take my second dose around 5 to 6 hours later. I do usually leave 24 hours between the last dose and blood test. Sometimes 12 if I have an afternoon dose of NDT. I always test in the morning before food. No other medications that would interfere, and vitamins are taken four hours away from hormones. I had read all of the above over the years, so that's good.

    My gut tells me that NDT isn't for me (literally my fat gut). Even if I wait the full 6 weeks, something is not right. I should not be gaining all this fluid weight, period. That's not the norm. In fact, I know that if I stopped the NDT tomorrow, within three days 5 or 6 pounds would shed off. It's happened in the past. The question is, what should I try next? I'm almost inclined to try T4-only again, but with a different brand. Maybe Levoxyl. I was on Synthroid for years before that.

    Also, I found a vitamin D result from five months ago: 55 ng/mL. Doctor told me that Cortisol was normal with a result of 11 ug/dL (blood serum). I asked about the saliva testing, and he said it was basically useless. I had already done it on my own though haha, and I'm waiting on those results.

    I'm so nervous about packing on weight – it's completely uncharacteristic for me. I played sports in College and got really fit even when on T4 replacement (Synthroid). So something is not right.

    I'm curious about T3-only, but it scares me. I would basically be on my own, since the doctor isn't open to it. I think T4-only is in order to prove that the NDT is causing weight issues. Sad thing is a lot of my other symptoms improved on NDT, including joint pain and hair loss, but not at the expense of gaining 15 to 20 pounds!

  • OK, so your doctor is eager, but not very knowledgeable. It doesn’t matter about the ratio of T4 to T3 in NDT. The body will sort it out. If there’s too much T3, it will convert less from T4. If there’s not enough T3, the body will convert more from T4. If your conversion is working well, of course. But if it isn’t, there’s not much point in shoving in more T4. Either the body will excrete it, or it will hang around unconverted and cause problems, or it will convert to rT3 and cause problems.

    So, as said elsewhere, you don’t have Hashi’s. And you’re doing everything right when taking and testing – although you still need to leave 24 hours between a dose of NDT and the test. It contains T4.

    It’s perfectly possible that NDT isn’t for you, as said previously. However, the weight gain could just be because your T3 is so low. Never mind that it has always been that level, your needs change. You still have a gland, so maybe it just isn’t putting out as much hormone as it used to and you need to take more T3. One way or another. Personally, I would sit out the 6 weeks, and then try an increase in NDT to bring your T3 up. But that’s just me. However, rather than going back to T4 only – whatever brand – I would be inclined to go for T4 + T3. See how that works. If that doesn’t do it for you, then the last resort is T3 only. And surely your doctor can see that if all else fails, that’s what you have to do. A lot of people do do it, and live happily ever after. So to speak.

    BUT, at some point you are going to have to settle on one thing and stick to it for a good few months to let your poor body and metabolism settle down. All this chopping and changing just isn’t good for anything.

    Be interesting to see the cortisol results – your doctor is wrong about the saliva test being useless, but a lot of doctors don’t understand saliva tests. They don’t do it in med school! I really can’t comment on the ‘11’ result without seeing a range. But if he said your vit D is ‘normal’, he’s wrong again. It’s too low. Have you been supplementing at all?

    I’m afraid that you’re going to have to get used to the idea that when you’re hypo, a lot of things will happen that ‘just aren’t you’. Hypo turns your whole world upside-down. Rules no-long apply. You have to learn to live with a new body – not such a great one as before, but it can still function reasonably well. And if you treat it well, it’ll get even better. So, look forward to seeing those B12 results! :)

  • Probably a silly question, but I suppose you haven't changed your diet in any way since early 2014?

  • Cortisol range is:

    11 ug/dL

    8:00 AM 8.0 - 19

    4:00 PM 4.0 - 11

    I tested at 8:30 AM. Hopefully that helps. I know that vitamin D is a little low. I supplement 4,000iu a day. Could go to 6,000iu?

    I will post the saliva test results when I get them. I will also get a B12 test done next time.

    Also, my diet hasn't changed drastically since 2014. Not enough to account for the weight by any means. I haven't been as active due to not feeling well however.

  • Uh oh – just found a B12 test from last year:

    352

    200-1100 pg/mL

    That's too low?

  • I wasn't thinking about your diet being directly related to your weight-gain, but more about how it might affect your thyroid/conversion. But if there's no change, then it's not that! But if you started eating less, that might have had an effect. It's probably as well that you haven't been as active, because you Don't have enough T3 to support a lot of activity.

    Well, that cortisol doesn't look that low. But then again, it was a blood test, and they aren't that reliable. And, it's only once in the day. Better wait for the saliva test to get a better idea.

    Your B12 is too low. Optimal is around 1000. You should be supplementing that with 5000 sublingual methylcobalamin, and a good B complex daily. You can lower the dose after a couple of weeks, but you can't over-dose on B12 because it's water-soluble.

    I should think you could increase your vit D3 for a little while, to give you a boost, then cut back to 1000.

  • One thing I have noticed is that when I take Vitamin B12 I get a horrible migraine-like headache. Happens every single time, so it's not a coincidence. Any idea what that would be?

  • B12 does the same to me, really horrible headache, won't be taking it again. Cant tolerate vitd either.

  • Interesting. So that begs the question – what do we do if we're deficient and can't tolerate supplements?

  • ahhhh... I had heard that some people can't tolerate it. But was that methylcobalamin you were taking or cyanocobalamine? I'm not quite sure where you go from there...

    You could try posting on the Pernicious Anemia site, here on HealthUnlocked. They might be able to help you.

  • I think I have tried both. I've also had injections in the past.

    I'll try the Pernicious Anemia forum. See if they have any advice.

    I'm having some palps at night now. Like my heart is skipping a beat then catching up. Had them before. Is that a sign of overmedication? Or under?

  • In your case, I would say 'under'. But it can be both.

  • As grey goose said because basically you are still undermedicated but that doesn't mean you must rush ahead and add more. It takes time for the cells to absorb and if you go too fast you just miss the right point where you are in balance and being over medicated feels similar to being under.

    Also as someone who had never lost weight without an awful lot of struggle, despite having been on 200 mcgs t4 and 20 of t3, or 5 grains of NDT and now t3 only all I can say is that 2 + 2 does not always equal 4 in hypo world.

  • You could gain weight because if you have Hashimotos, NDT can flare up your autoimmune disease. Thus, more inflammation, will cause you to gain weight. It is mostly fluid. Some people just do worse on NDT. I did. I gained weight on it. I will never use it again.

  • Interesting. You're one of the first people I have seen who has also gained weight on NDT. I'm not sure if I have Hashimotos or not, but my weight has definitely gone up.

    When you used NDT, were your lab results ever optimal?

    And, if you don't mind me asking, what do you currently take faith63?

  • greygoose did too, lots of weight.

    The last time i did labs on ndt, my free t4 was on the low side and my free t3 was pretty good, but i was so puffy, high bp, hot flushes, racing heart, sweaty..it was bad.

    I am on t3 only now, i don't convert the t4 to t3 very well. Whatever makes me inflamed, is why i am still not feeling well, put i did lose weight, then it goes up again..fluid.

  • OK, so that's another 2 tests you really need done - antibodies : TPOab and TgAB.

  • Okay, found these results from just before the first of the year:

    TPOab

    6 0-34 IU/mL

    Antithyroglobulin Ab

    <1.0 0.0-0.9 IU/mL

    With these results I was told I do not have Hashi's.

  • Ummm... which are the results and which are the ranges? TPO result 6? Range 0 - 34? TgAB <1.0 range 0 - 09? That's a very strange range for the TgAB. Never seen one quite so low and narrow.

    But, it would look like they're negative.

    However, not having Hashi's, and not knowing the reason for your hypo, doesn't mean that your gland isn't going to get progressively worse. And that could accound to the T4 appearing to stop working...

  • In a nutshell no! Unfortunately you will learn that Levothyroxine is failing thousands of people mostly women. Many people gain weight through it, I have gained 2 st since starting on Levo over the last years and immediately it brought menopausal symptoms especially hot flushes which make you very tired. which have continued for 5 years. I've finally gone to a private doctor that specialises in thryroid probems been to NHS Endocronologist a waste of time I'm afraid. Look up Dr.Petefield on internet based in surrey under Petefield CLinic (Dr Durrant-Petefield). He sees people in different parts of the country. I am now on a form of Cow Thyroid and adrenal gland tablets but only been on them for 3 weeks. A lot of people with thyroid problems have adrenal gland failure but apparently most NHS doctors don't recognise this problem, Dr. Petefield diagnosed it. I'm also taking various vitamin tablets. I don't know whether the new Meds are going to work (they are natural supplement products as far as I am aware) but I know someone that has been to see the same doctor and she has been on the pig thyroid also strict diet, gluten free, vegetarian etc. and she has lost a huge amount of weight and all her symptoms have gone, so I'm keeping my fingers crossed. She said she has always had the same diet and before the new Meds. she put on huge amount of weight. I do sympathise with you, I just don't want other people out there to waste years like I have, your bloods may be normal to the GP but you can still have the symptoms not being tackled. Levo. only treats T4 and doesn't treat the T3, I am told that because I have adrenal gland failure that the T3 will not be correct and the levo. will never work properly for me (at least I think this is what he said in simple terms). Also my GP had told me that my last bloods were virtually normal but Dr Petefield said they were no way normal. GP's do not have enough training on thyroid problems and at appears alot of Endrcronologist don't either or don't want to know about side effects such as hot flushes. Apparently the drugs companies have a strong hold on the GMC in this country and it is very difficult to change the culture. If you read in this website onto the different sections there will advice about what supplements to take and what other people's opinions are on the different medications. NHS doctors are very negative about the natural pig thyroid etc. yet many people have been helped, it is widely used in the US. Dr Petefield has worked with a top research doctor in the US in the past and he himself suffers from the condition, so is more sympathetic, the only trouble is, he is quite old, so god knows what we going to do when he retires. I was told of a doctor in Powys but she is so busy she isn't taking any new patients. Good luck with it all. x

  • How is Dr. P addressing your immune system, if you have Hashimotos?

  • One possibility and I do agree with Grey Goose.

  • Thanks for this, so interesting.

  • For many, hashimotos patients don't feel well unless they have ruled out food sensitivities and gut problems. 5 years out, i am still not ok.

  • Dr. Ray Peat is a noted authority and this interview proves why: thyroid-info.com/articles/r...

    Dr. Ray Peat: The World Health Organization standard was revised upward by researchers at MIT, and recently the MIT standard has been revised upward again by military researchers; this is described in a publication of the National Academy of Sciences (National Academy Press, The Role of Protein and Amino Acids in Sustaining and Enhancing Performance, 1999). When too little protein, or the wrong kind of protein, is eaten, there is a stress reaction, with thyroid suppression. Many of the people who don't respond to a thyroid supplement are simply not eating enough good protein. I have talked to many supposedly well educated people who are getting only 15 or 20 grams of protein per day. To survive on that amount, their metabolic rate becomes extremely low. The quality of most vegetable protein (especially beans and nuts) is so low that it hardly functions as protein. Muscle meats (including the muscles of poultry and fish) contain large amounts of the amino acids that suppress the thyroid, and shouldn't be the only source of protein. It's a good idea to have a quart of milk (about 32 grams of protein) every day, besides a variety of other high quality proteins, including cheeses, eggs, shellfish, and potatoes. The protein of potatoes is extremely high quality, and the quantity, in terms of a percentage, is similar to that of milk.

  • Hey, hypoguy, have a look at this, Shaws just posted it:

    healthunlocked.com/thyroidu...

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