Can I really need this much medication? Can I add more?!

Hi all. So I’ve taken 150 levothyroxine for 9 years. My most recent results on that were: TSH – 1.74 (0.27 – 4.20), FT4 – 19.89 (12-22), FT3 – 3.73 (3.1-6.8). Lots of symptoms. So 7 months ago I started adding T3, gradually and also gradually reduced my levo. I’ve had quite a few blood tests between then and now but this is the most recent

so on 100 levo + 43.75 T3 my results are: TSH - 0.01 (0.27 - 4.2), FT4 - 11.8 (12-22), FT3 - 5.26 (3.1-6.8).I supplement magnesium. Zinc, iron, selenium, b complex and have good results (as per advice here).

So I never expected to be adding this much T3. I imangined I would add maybe 10 and then I’d be sorted but I find myself with what feels like quite a lot. I don’t feel completely back to myself (not that I can remember what that is really) and thought about adding back another 25 of levo.

My question is, does that seem excessive? Do people (or some people) feel better with a higher T4 (as some people are ok without taking any T4)

Thanks for any thoughts in advance. 👍

Suggested I add these- thanks. ferritin 87.8 (20-150), B12 792 (>250), folate 20.70 (8.83-60.8) and vit D 54.9 (>50) (but I can’t supplement due to a condition that means vit d is toxic to me).

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78 Replies

  • I took 150 T4 and 50T3 at one stage, but i wasn't well. I had been on 6 grains of armour before this.

    What i have found with thyroid meds is that less is more. I have discovered i work very well with a regular T4 dose (125) and a very small amount of T3 (3mcg).

    Dr Blanchard has a book on amazon about thyroid treatment and he is the only doctor i know who says we need T3, but actually in really small amounts. If it was possible he would start patients on 0.1mcg (1/0th microgram), but they don't make this size. His ideal ratio is 98:2 approx.

    I found ages ago a 6.25 T3 dose was more effective than the bigger doses. After reading the book i lowered to 1/8th of a tablet = 3mcg approx.

    I can't say what will work for you, but it is important you are aware of this type of protocol so you can try it out.

    I converted much better than you looking at your 150 T4 results, so conversion is not an issue for me. IT often is for women and this is due to the oestrogen clogging up the liver. So oestrogen/progesterone could possibly be looked at.

    I would imagine 125 T4 would get you into the mid teens and then you could try use smaller T3 doses to see if you went past your sweet spot.

    Night time dosing works wonders for me also, it is a big difference to morning dosing. Also worth a look.

  • Thanks- lots for me to think about there.

  • I also take 65mcg (half my daily dose) when I go to bed. I think its better that way for me also. 😀

  • Hey, to give you perspective, below is snipped of my dosing throughout 10 years:

    T4 50 - 1st ever dose (panic attacks) moved within 3 months to ->

    T4 200 (got symptoms of overdosing - shaky hand)

    T4 150 + t3 20/40 (no issues)

    T4 200 + t3 20/40 (no issues, lost weigh dieting on 2/5 diet)

    T4 300 only for one year (high t4, don't have t3 tested)

    T4 250 only (one year, seriously piled up on pounds)

    T4 100/150 + t3 25 or 50 or 75 up to 150 (6 months couldn't find sweet spot)

    T3 only 25 up to 100 split dosing a day (since last week trying to flush out t4 completely, all looking positive)

    There were some minor dosing variations in between as I go by my symptoms usually: cold and tired early during the day. My bloods always were TSH non detectable, t4 on 300mcg was high and over, other dosing combinations mid ranges;

    t3 once couple of points over top range when on t4 100 + t3 150.

    With regard to noticeable overdosing symptoms during all that time:

    Shaky hands that was early on my treatment on 200 t4 and since then never had it again. Had faster heart beat on high 150 t3 this last summer so dropped down t3, never had problems with sleeping, always had stiff and painful muscles no matter dosage. Migraines and pins and needles in my hands always on low doses of t4.

  • Pins and needles = B12 levels want to be checked.

    Migraines = high estrogen levels or E and progesterone balance wants to be looked at.

    If you were on 150 T4 and 20/40 T3 with no issues why did you change ? I suppose you were still not well.

    See how T3 goes, but i doubt it will be the answer. I have done T3 up to 90mcg and i was so ill. Anything over 55mcg T3 and i was ill. Not a T4 /RT4 issue at all. But even on 55T3 i was still not right.

    Have you worked out what a good dose of T4 is for you yet. Based on blood tests and roughly how you feel. I realised 125 T4 was the best dose for me and if i went up to 150 i wasn't as good. Probably due to not having the relative amount of cortisol to match T4 action.

    Anyway, if you can find a T4 dose which sort of works, you then add in the T3 BUT you start very small and work up very slowly.

    So a 25mcg tablet can be cut using a stanly balade into 1/8th sizes. This is the smallest i can cut. So the dose amount is approx 3mcg.

    If you are tired early morning i imagine you take your T4 in the morning.

    Switch to bedtime dosing of the T4 and see what 3mcg T3 at bedtime is like. At the moment you are trying T3 only and so taking large amounts of T3 may disrupt sleep, but i would see what 3 or 6.25mcg T3 at bedtime does.

  • marsaday sorry my original reply was meant for Hattie007

  • I am on 80mcg of t3 and take it all at bedtime. If I try to drop it the first symptom is restless legs in the evening and that I cannot stand so feel that I need my 80. xx

  • It takes a long time to get stable with T3 in the mix and taking this high dose is probably a temporary thing. You’ll find you have to reduce it over time. It’s really a difficult thing to get stable, you could do with an endo who can help. Good luck.

  • Please take into account the fact that Levo (T4) is the fake thyroid hormone. T3 is classified not as a drug but as a replacement. I personally do wonder how on earth people "do well" on Levo alone, or if a mix of Levo & T3 ends up with reverse T4. Taking T4 made me much iller than before taking anything for hypothyroid, and my TSH was at 78 when first diagnosed. When first diagnosed I was prescribed only T4 by my GP. I was so incredibly ill until I discovered T3 existed. I'm now on 40mcg of T3 only and feel ok

  • marigold22,

    Stating "Levo (T4) is the fake thyroid hormone" seems to be just as one-sided as the insistence by many in the medical fraternity that levothyroxine monotherapy is always the only treatment.

    I am very well aware that levothyroxine monotherapy absolutely does not work for everyone. However, I am doing pretty well on levothyroxine alone. Maybe I will decide I need some source of T3 in future, I am not ruling anything out, but even though I could readily lay my hands on such a source, I do not do so.

    We are all different. We each have our own experiences and needs.

  • MOST patients do well on T4 only, hence it is the main protocol the world over.

    However there is a BIG group of thyroid patients who need something more than T4 only. The protocols are varied and consist of T4/T3, NTH, T3 only, T4 plus a very SMALL amount of T3. There are probably more protocols.

    It is a minority of thyroid patients who do best on T3 only and if you were to compare how patients did on T4 only compared to T3 only i imagine T4 would win hands down.

    The problem in the medical world is recognition that x protocol will not work for all and we should have a much broader range of treatments.

    Regarding why you felt unwell using T4 only. It is very common for someone to feel totally fine with a huge TSH. The body can sense not enough thyroid is being produced and so it will over compensate the rate of T4 to T3 conversion. Hence tissue levels of T3 will be high, but overall thyroid production is low.

    When you then take the T4 the body immediately senses it has a new supply of thyroid hormone and so switches off the hyper conversion. After a few days tissue levels of T3 will drop and you start to feel rubbish.

    In this instance the body is not able to move over into a new more normal way of operating and maybe the mechanism of hyper conversion has cocked this whole process up a little.

    Dr Blanchard talks about this very common problem in his book functional thyroid.

  • I agree Marsaday that the level of TSH is not related in anyway to how poorly you can feel. Measurable TSH is a nightmare for me, I’m too poorly to live. Suppressed TSH can occur when I feel well but for me it’s all about balance.

  • Hi Marigold22

    In response to "personally do wonder how on earth people "do well" on Levo alone,.....". I am merely trying to answer your ' on earth...'.

    I've been a Hashi sufferer since 2000 [after 10 years of searching for SOMETHING to help me discover what was responsible for a decline in my overall health - so 1990-2000 is a LOST decade].

    As usual, I was started on 50 mcg Levo and then upped to 100 mcg after six months. To date, I am still on 100 mcg without access to T3 in any form. It is simply NOT prescribed where I live 'on earth'. I read about CYTOMEL [T3] way back after diagnosis but little point in yearning for what is not obtainable. Would I like to be able to 'try it out'? Of course - I'd try anything to feel better but..... denied denied denied.

    2000-2015 I was physically active with netball 3-4-5 nights per week [playing, coaching, umpiring and held multi roles within league admin]. I surged ahead and shoved the niggling thyroid issues aside. Unfortunately, in 2016 my circumstances were altered and I have been inactive so the last 16 months. I continue to struggle with the ever-ballooning weight gain, horrid pain in my joints, swollen feet, calves and knees, brain fog, panic attacks, depression, brittle nails, hair loss [from a healthy head of thick, LONG and beautiful hair], missing libido, etc. Definitely not in my plans from childhood to become driftwood by 50 and deadwood at 65.

    I am intrigued at the many posts whereby many sufferers self medicate out of sheer frustration. Increasing dosages without proper guidance can have serious results. It is true that many medicos have not kept up-to-date with advances in treatment of thyroid disorders and there are many websites offering information on how best we can become enlightened and seek treatment. Oft times, too much information can be terribly confusing and counter-productive. I presently have at least six different 'experts' emailing on a daily basis and at first glance my hopes rise to the clouds but in-depth reading merely gives me a ride around the maze and still helpless.

    There are many basic elements to be taken into consideration and they all revolve around our food intake. One suggests we stop consuming: IN ANY FORM - beans, cruciferous veg [bok choi, broccoli, brussels sprouts, cabbage, cauliflower, kale - to name a few], soy and wheat. Can we try this for 14 days and see if we feel a slight change in our bodies?

    I would like to share links BUT I am unsure whether this is permissible. I have also shredded fresh ginger, poured boiling water onto it. I drink this throughout the day. Topping up the ginger and water as they days go by. This helps somewhat with the knee pains. No harm in trying this - its natural.

    How do we enlighten the Endos!? When I was a kid, I was always intrigued by the fairy tale Who Will Bell the Cat. Our TRUE story is not, who will bell the cat but HOW CAN WE TELL THE CAT.

    Having said all of the above, YES it is possible to exist and survive on levothyroxine alone, in the absence of currently touted T3.

    Enjoy the weekend!

  • I so relate to your reply, but talking of cats, can I put one amongst the pigeons and ask Why should we accept limited treatment? In this day and age with such a prevalent disease surely Endo education, ongoing research and a full and comprehensive assessment and treatment of Hashimoto's is our right and entitled expectation? Why, oh why, do medics think we actually like to visit them? I cannot and will not become accepting of the anomalies that surround this disease. It is shocking and absolutely unacceptable that folk are having to source appropriate meds themselves, suffer for decades and ultimately accept a generally and apparently prolific third world service. Pro-activity in every area of this disease is necessary, both on the part of professionals and patients alike. Where my acquiescence kicks in is "What can little old me do to help resolve any of these issues?" All answers welcome!

  • Baobabs - you have expressed my thoughts entirely - probably what most people with thyroid issues think too.

    However I must say I do find quite scary the thought of people trying to self-treat using poweful drugs such as hormones... and done simply out of despair of course. Patients should never be placed in such a situation ... in an ideal world. It is so frustrating the medical profession are so ignorant about thyroid dysfunctions and don't appear to make any kind of progress in that direction.

    Having seen a private endo (on the "thyroid friendly" list) recently he actually advised me not to try T3 as it would have caused me more problems (having been feeling so ill for so long - no life really) but suggested other investigations instead in trying to find the root cause of my feeling so exhausted all the time, fatigued lethargic and unable to lead a normal everyday life. So will see. Yet he has prescribed T3 to a few people so he is not anti-T3 when it is required. It would be so good to see endos trying to understand the complexities of thyroid dysfunctions.

  • marigold22

    What was your last T4 dose before you moved on to T3 completely?

    And how long have you been on T3 40 mcg for?


  • Hi, I was diagnosed hypo in 1981 (TSH about 76) following the birth of my son. No doubt I had been hypo for at least 5 years previously as I had septicaemia in 1976. All I can remember is my GP giving me T4, saying You will get better now. I honestly felt much worse on T4 than I did before taking it. I can't remember the dose, particularly as I was in zombie mode then and for the following 30 years. I found Dr P in 1995 who realised (without blood tests) that I needed T3. Unfortunately he only put me on 20mcg a day, I couldn't afford to keep seeing him as I wasn't able to work due to ill health, so stayed on those 20mcg of T3 a day for 10 years. I then took it upon myself to increase to 30mcg a day (GP didn't understand so went along with it), then in 2014 fortunately found a Prof of Endo who increased to 40mcg a day. I still didn't feel wonderful but certainly better. Since August this year, I've changed my diet and its' like being re-born.

  • Thanks marigold22

  • There's no such thing as 'reverse T4'. And even if there were, I don't see how a mix of levo and T3 would produce it. :)

  • I've read about Reverse T4, when T4 is not utilised by the body because it cannot convert it. Or have I gone completely insane?

  • Well, I would be interested to read whatever it is you've read, because I would like to know how, exactly, the rT4 was produced.

    Or, you got confused with rT3. RT3 is produced when there is too much unconverted T4 in the system, and is produced by removing the opposite iodine atom to the one removed to produce normal T3 - hence the name 'reverse'.

    As T4 isn't converted from anything, no iodine atoms have been removed, I don't see how it is physically possible to have 'reverse' T4.

  • Apologies - I think I must have read about Reverse T3 when there is too much unconverted T4 in the system.

  • Yes, I think that's probably right. :)

  • marigold22,

    I don't know if it is you who has gone mad, or others. There have been several references to Reverse T4 over the years.

    For example, on Stop The Thyroid Madness, Janie has written something that shows a massive misunderstanding of what is being talked about. And claims that there really is Reverse T4.

    What is said is completely wrong-headed - and the idea that the scientifically-minded guy named Brian who also has a sister with a major in bio-chemistry both fell into the same makes me despair for the future of biochemistry!

    They completely miss the fact that the handedness of thyroxine is a well-known issue. Indeed, we have seen both levothyroxine and dextrothyroxine used in the past.

    They then miss that Reverse T3 is called that because a different iodine atom is removed - not because the molecule has a different handedness. (A more complete name would 3,3',5'-Triiodo-L-thyronine - note the "L" in there!)

    It is egregious errors like this that make me extremely wary of any information on STTM unless it is cross-referenced elsewhere.


  • Too right!

    But, it never occurred to me that marigold22 might be referring to the 'handedness' of levo, because she mentioned conversion problems.

    I have searched and searched the internet for references to rT4, because, some time ago, on a different planet... er... forum, I got into a terrible row with some bloke who insisted that it did exist, and I was a moron for not knowing about it, and that there were references to it ALL OVER the internet! But, he wouldn't give me any links. lol

    So, I found two references to rT4, on two other sites, and I contacted both of them. The first one said 'oh dear! that's a typo, I meant rT3'. And the second one has never got back to me - I think it was an abandoned site because all the posts were rather old.

    So, marigold22, if you do have any links, please post them. :)

  • Hi Greygoose, I’m no expert on Thyroxine, but having studied Chemistry once, as it’s called Levothyroxine the Levo prefix specifies one of two possible arrangements of atoms within the thyroxine molecule. Levo is only used as a prefix for molecules for which there are two possible (mirror images) of arrangements possible for the atoms which make up a molecule. If you think of left and right hands as molecules - both have all the same parts, just arranged the opposite way round, they’re mirror images of each other. If they were keys they wouldn’t fit into the same shaped lock. I presume that only the Levo format can be converted to useful T3, the other format which would be prefixed dextra so would be called Dextrathyroxine, though it’s understandable that non- chemists might call it reverse thyroxine /T4. I don’t know if Dextrathyroxine would convert to so called reverse T3 but it seems possible! Begs questions whether reverse T3 problems are due to thyroxine quality issues.

  • I'm not really sure why you're telling me this, Aurealis, I do know what the levo suffix means. And, I did say that it never occurred to me that the OP might be talking about it, not that I didn't know what helvella was referring to.

    Levothyroxine sodium, is synthetic thyroxine. As far as I know, there is no Dextrathyroxine manufactured for any reason. So, the question of whether or not it would convert to rT3, doesn't arise. But, surely dextrathyroxine would be inactive, so it wouldn't convert to anything. I don't know, I've never studied the question, because it just doesn't arise.

    And, by the way, levo is Latin for 'left', and dextro is 'right', but I can't see that that is any reason to call levothyroxine 'reverse' T4 whether you're a chemist or not. Given that there is no dextrothyroxine, what would it be the revers of?

    RT3, in the present context, is produced when the level of unconverted T4 reaches a certain point. Nothing to do with the quality of the T4, nor with the fact that thyroxine is 'lefthanded'. It's more or less a device the body uses so as to not waste excess T4, because the rT3 is then converted to T2. I can't help but think that you're just muddying the waters here, and I don't understand why.

  • I wasn’t trying to muddy the waters at all. It’s likely that there’s some Dextrathyroxine (small amounts) with all Levothyroxine. Dextrathyroxine would have The mirror image (ie reverse) structure to Levothyroxine. I don’t know what you mean by OP.

  • Original Poster.

    Why would there be D thyroxine with all L thyroxine? And, yes, I know it would have the mirror image, but... None of this has anything to do with rT3.

  • I don’t know if it has anything to do with rT3. Helvella seems to imply not. But in any chemical reaction it’s rare to have 100% production of anything, it’s always like a best yield situation contrived by adjusting conditions. So it’s likely there would be some of the dextra form present, albeit in small quantities in all Levothyroxine. I just wonder if high levels of T4 in the blood leading to rT3 are anything to do with high concentrations of dextra in the original thyroxine. Without knowing more about the chemistry of thyroxine specifically I don’t know if the dextra version would be more likely to lose the different iodine atom to form rT3. It makes superficial sense because if our thyroxine includes inactive/less active dextra, we’d either take more as it wouldn’t be so effective or just accumulate more in the blood so T4 would be higher. And we’d feel poorly. Perhaps higher levels of T4 (of any type) in the blood favour formation of RT3.

  • Helvella doesn't imply anything of the sort. I just don't think you've followed the conversation very well. And I don't think you're making a lot of sense, either. But, I'm not going to discuss it anymore because it is just muddying the waters, and must be confusing a lot of people. :)

  • Aurealis,

    T3 and reverse T3 are still levo isomers.

    Therefore Dextrothyroxine would NOT convert to rT3.

    I don't believe for one minute that thyroxine quality control is the cause of rT3 issues. And certainly not due to dextrothyroxine. The maximum impurity level allowed in levothyroxine, last I managed to find an official monograph, was 1%. With rT3 we are talking about far greater amounts.

  • Found this abstract about impurity levels in levothyroxine:

  • Thanks Helvella, but I’m never very reassured by these figures in knowledge of the difficulties I experienced with thyroxine and the lengths I went to, to make tiny adjustments in attempts to feel better. Also, there will be a reverse D type T3 molecule too. I’m just not convinced that standard blood tests can distinguish between l and d T4 or l and d T3 whether reverse or not. So it’s a potential other complication in the (non) reliability of blood tests. Fillers, storage conditions, age are all things that could potentially affect proportions of d and l in thyroxine post production and testing. May be a factor in different responses to different generics / brands too. However, this thread is probably not the place for all this.

  • What happened to all the T4 in my body that I took for 14 years without knowing I have the faulty gene? I was totally zombyfied, was hardly able to walk, certainly my brain did not function

  • Some of it was excreted and some was converted to rT3.

    The rT3 was then converted to T2. :)

  • Hi marygold22 My tsh was 147 18 years ago and I was given Levaxin for three weeks. I got so ill could not sleep or work. I refused to continue with Levaxin. After six months I was persuaded to try t3 which worked perfectly. I have changed the timing of when to take my 40mcg t3 several times. Now I take 30mcg 4am the I take 10mcg around 16.00 and that seems to work OK for me This means I can have all my supplements at breakfast time and at bedtime. I have found out that I was unable to convert t4 to t3. Ha ha this was a long not for me.

  • Levo is not a "fake thyroid hormone" its synthetic but not fake. I do very well on Levo and I have no thyroid 😉

  • Great you are lucky, I wish I did but luckily I have found the answer NDT and T3 mix.

  • Me too

  • Fair enough. I read a reply by one of the administrators or a member who is a regular contributor, (unable to remember who it was), stating that T4 is - ok - the synthetic thyroid medication, and added that T3 is what the body utilises. T4 made me incredibly ill. So pleased to hear that some do well on T4.

  • marigold22,

    A working thyroid produces both T4 and T3. Sometimes people refer to T3 as the 'active' hormone, and T4 as the 'storage' hormone. The T4 that's produced is converted into T3 as required by the body. It's rather like the difference between a ready cooked meal that you can eat immediately (T3) versus something you need to take out of the cupboard, prepare and cook before you can eat it (T4).

    Levothyroxine (T4) and liothyronine (T3) that we get prescribed are both synthetic hormone replacements for the hormones naturally produced by the thyroid.

    Many people really are absolutely fine taking just the T4 replacement. Mostly, you won't see those people here on the forum. Some people do need a combination of both, and a small minority can only be well by taking just T3.

    It's important to remember that we are all individuals and what may be right for one person won't necessarily be right for another. Your experience is exactly that... your experience. It doesn't automatically apply to anyone else. :)

  • How can we be sure that many people really are absolutely fine taking just the T4 replacement if no studies of long term health of those on Levothyroxine/synthetic T4 monotherapy have ever been undertaken? It would appear that 1/5 have abnormal thyroid hormone levels despite being supposedly optimised and suffer persistent symptoms according to this study:

    Maybe the other 4/5 on Levo will be unaffected and live a healthy life as if their thyroid function never got compromised but it would appear this is mere supposition and not based on any scientific study of any rigour as it would seem that none exists.

    That said, I tend to think if you feel ok you are ok - that is not very scientific either but at the end of the day that is what really matters to the individual, especially if no meaningful research is being undertaken on the consequences of treatment regimens for long term health.

    If we were to get a proper choice of treatment options it might become obvious what proportion of patients felt best on which option. I doubt I will ever see that day.

    I never felt well on Levothyroxine 125mcg was the best dose I could get but my health was much better restored with NDT 1.25 grains initially for 3 years, then 2.25 but now down to 1.75 grains.

  • Both Levo and T3 are synthetic. This means they are produced in a chemical lab from basic materials. You may sometimes hear them called that in comparison to NDT (natural dessicated thyroid), where the hormones are taken directly from an animal thyroid.

  • I've had an underactive thyroid for 25 years my current dosage is 300mcg daily of levythyroxine.

  • I have had been treated for an under active thyroid for over 60 years! They now reckon I was probably born with no functioning thyroid, but 70 years ago this was not tested at birth. I am on 300 mcg thyroxine, and am well. I was on 600 mcg about 60 years ago, then on 400 mcg till 4 years ago. At one stage it was reduced further, & I was really ill, but 300 mcg seems to be fine. Occasionally, if I feel exhausted, I put up the dosage for a few days, but generally I am well. After 60+ years, I think I know my body!

  • Let's return to your previous results! Looking st the one when you were taking Levo only is the most helpful. You can only look at conversion issues if you are on T4 only as the results taking any for of T 3 are not only read differently but only the FT3 result is accurate, TSH will be suppressed and FT4 may fall.

    So on those results for Levo only you have a FT4 result that is higher in its range than TF3 result is in its.

    That indicates that there in a conversion problem.

    Have you any results recently for Vit D, B12, folate and ferritin? These are the things that help you Thyroid work better so getting those optimal, not just in range, is what you need to do. Post your results with ranges for comment but many of us have found this to be the problem and it worked fell for me. Depending how low you are it can take a while to get your levels up to the right place. I'm taking months not weeks but it's well worth the effort. You may find you don't then need to add T3 or only a very small amount. But it's well worth getting the basics right than trying to paper over the cracks. I've certainly been more stable.

  • Thank you for all your responses: Ferritin 87.8 (20-150), B12 792 (>250), folate 20.70 (8.83-60.8) and vit D 54.9 (>50) (but I can’t supplement due to a condition that means vit d is toxic to me).

  • Why not ask for the brand name of the medication, sometimes the brand name medication may have the main ingredient, than the generic brand it worked with me . The Dr. was going to increase my doses on the genetic brand to 50mg, but I wanted to see if the brand name will make a difference, I feel better not fatigue, sleep great. Ask your Dr. about it.

  • Herbal24,

    In the UK, there is no "brand" liothyronine (T3) product.

  • Some people need very large doses of T3 and others get no side effects on even very high doses husband and daughter were both on 120mcg T3 without ill effect but it was not till they switched to NDT that hypo symptoms its a fact that natural thyroid contains elements some people desperstely need

    I dispute that majority of patients are fine on levo ...i think far far too many have been forced to accept a very poor quality of life on levo and believe their doctors when they are told their symptoms are nothing to do with thyroid

  • I agree, I know of three people who have no thyroid besides myself and none of them are on this site. One is my sister, she struggles on with her Levo only and never feels good. The other two friends are also on Levo only and don't feel great and are both overweight.

    I didn't want to accept feeling tired and ill all the time so decided to do something about it, which I have by joining this site.

    It just depends on what type of person you are!

  • So encourage them to jnderstand hypothyroid and find a solution

  • Yes I believe me I try. Have you every tried to talk to a brick wall, that is what it is like. I will have another go at my sister the only trouble is that she was a nurse for over 30 years and has her head in the sand.

  • Well she will just have to continue to suffer then

  • Yes, I agree. Many people just won't complain, and quality of life scores are low when they are collected.

    I think it's a big mystery, though. We don't really know how many people are completely fine on Levo, and what proportion are in this large 'mustn't grumble' group.

  • It's so complicated and it involves people who come from many different backgrounds and conditions. I suppose we should count ourselves very luck.

  • Very lucky that we're indulge small group that try to help ourselves? Very much so, I have met many people in hospital that were clueless on frightening ways :( People who thought they were being sent home to die when they were basically fine, and at the other end of the spectrum people whose cancer had spread to other organs and hadn't been told that was a bad thing.

  • The best way forward is to try to educate ourselves. I am retired and apart from school biology haven't really been that interested in health, although having said that I have always looked after myself eating, exercising and not smoking has helped. I am now becoming a fanatic researching everything going.

    We should be able to trust the Doctors and the medical profession doing the job that they are paid for but we cannot.

    Many of the universities have people on their boards who have a vested interest in the Big Pharma companies. These companies supply lots of money towards the running of the universities. SAD.

    Money talks and these universities are training up the next set of doctors.

  • I take natural desiccated thyroid which is said to be different from synthetic hormones in that the T3 and T4 in NDT are mostly bound to proteins, so not directly available to the body. I have always needed high doses of NDT to feel truly well and rid myself of all symptoms. I currently take 5.5 grains and that seems to be what I need right now (= ca 210 mcg of T4 and 47.5 mcg of T3).

    My FT4 levels are in range but low in range, and my FT3 levels in the upper third of range.

  • anna69,

    We know far too little of the details of how the hormones of desiccated thyroid are absorbed. (Or whether any non-hormone constituents are significant.)

    Detailed research should be done so that we can appreciate why desiccated thyroid seems distinctly different to combinations of synthetic hormones.

  • I totally agree ..but given all 5 in my family if they could not get NDT they would all have to claim every benefit and help going because they would be in far too much pain etc to work

  • Yes, I felt completely different almost immediately on NDT, even though the initial dose was tiny. I'd love to know what mechanism in my body is responsible, as I'm sure it would indicate how to treat me. I'm still very ill, despite the big improvement over synthetics.

  • Just a comment about not believing people do well on Levo, well I did for about 20 years but as a regular reader of this forum then people you are well done to on the tell us this and I imagine quite a high percentage of one who aren't doing well aren't taking enough plus those who may be on a good dose are getting other things wrong like not checking on the other things like vitamins or over exercising before adequately medicated. Other such reasons could be a very long list. Getting the medication isn't an instant fix and other things need to be spot on as well.

  • Two years ago I was on Levo only I became very ill. 18 months ago I switched to NDT. I finished up taking 3 grains per day and my FT3 was well over range and I was still feeling very tired. 4 weeks ago I started adding T3 and reducing NDT. For the past two weeks I have taken the following - at 6am 1 grain of NDT and 12.5 T3. About 2.30pm I take another 12.5 T3 only. I start to feel slightly tired at about 12 - 1pm so may add another 12.5 T3 in the morning mix.

    I feel great so far so good with no thyroid either. The thing is how do you feel on the amount that you are taking now?

  • Thank you for you’re reply and insight. I feel improved compared to 8 months ago, unrecognisable in fact but still feel there’s a way to go. Thanks.

  • Hattie007 DeeDee16900 You could do the private gene test from Regenerus, the DIO2 test. I did that in June 2017 and then knew for certain that I can't convert T4 into the usable thyroid hormone T3.

    If you do decide to go ahead with the private genetic test, you would need to phone or email Regenerus as they have a myriad of thyroid gene tests. It's the DIO2 (three letters & one number). It costs around £160. This price includes the legally required counselling. You need to request that Regenerus supplies the councillor as you don't want any information going to any of your doctors. It's a legal requirement to have counselling with the results of a genetic test. The Regenerus counsellor phoned me and talked at length, with my result (which was positive).

  • Thank you for this. I did consider this at some point but wasn’t sure what difference the result would make to me? Other than knowing what I suspect already. Would it change how I medicate?

  • Hattie007 If you did the DIO2 test and it was positive (either from one parent or two, unable to remember the scientific names), then it proves that your body struggles to convert T4 into T3. The T4 is being 'wasted' and probably being turned into Reverse T4 which will cause you health problems. Once I knew for definite that I had the faulty gene from one parent, I printed out the results and was able to wave them in front of GPs and endo's. They don't fully understand them, but at least I was given all my T3 on the NHS and they reversed their decision to stop my T3.

  • Ok that’s really interesting, thank you.

  • Hey marigold22

    Does it say anywhere on the test results that DIO2 gene cause T4 to T3 conversions problems?

    Can you shed some light on what it actually says – without going personal or inot details. Thanks appreciated

    I’ve been meaning to do it for ages, but if I’m going to spend 160 quid to be then told by my GP or Endo (and believe me, I’ve hear all sorts of quackery from them), they don’t know what it is, don’t understand it, NHS doesn’t support or acknowledge private tests etc. you know ....


  • trelemorele . My positive DIO2 results state :-

    Molecular Biology. Sample Origin : Saliva

    Genetic polymorphisms implicated in various pathways

    Result : Deiodinase, iodothyrnonine, type II

    DIO2 (T92A) rs225014 Heterozygous variant genotype TA

    (note: heterozygous = one parent, homozygous = both parents)

    Interpretation : Consequences of the detected genotype - decreased ability of the enzyme to generate the active T3 hormone.

    Clinical significance of the analyzed genetic polymorphism - thn there are 13 lines of scientific jargon in very small print. I can send it to you if you are interested.

  • Fantastic marigold22, thank you.

    No it's enough, no need to send more.

    It says it decreases conversion so pretty much what I wanted to know. You know ... black and white.

    Thank you very much for that. That is very useful bit of info 😊

  • There have been reports on the forum of doctors not taking these results seriously and even if CCGs not taking them into account and allowing T3 to be prescribed. But I think it can help to win over some doctors. As he NHS don't do the test, the official line will probably be that it won't be accepted.

  • Looks like you've reduced T4 too much. If I were in your situation, I would try to get that FT4 to mid-range-ish. Maybe 125mcg levo? And reduce T3 by at least 25/3=8mcg. How does your previous levo-only dose of 150mcg compare to the T4-only equivalent full replacement dose, which is about 1.7mcg/kg body weight?

  • Hello,

    Your folate seems low.... supplementing with the active form 5-MTHF was advised to me.

    With TSH so low, it would suggest your body is getting too much thyroid hormone. It was suggested to me to have it at approx 1. It seems like a huge amount of T3 - I read that a normal human thyroid gland emits some 100 T4 and 10T3 per day. Of course, you do not know what you absorb of what you supplement, however, I rather think of this as a guideline.

    What is your vitamin D condition - because 54 is low for vitamin D. And, it is SO important to so many aspects of health. Is there a way round this, can the condition be addressed or alleviated in other ways? I'm happy to research/think for you, if you PM me.

    What about high sensitive C-RP.

    Why do you take iron? Are you deficient? if so why? I read once that H.Pylori infection depletes iron - I'm sure there are other reasons.

    What about diet, too? Or autoimmune conditions? Do you know the Perfect Health Diet blog/book, and of course, the Paleo / Primal lifestlyes. They are great places to start with that. There is also an autoimmune variety of Paleo.

    But, I wonder what else is going on for you if you are not feeling good. The Perfect Health Diet blog/book is NOT JUST ABOUT DIET, its about nutrient balances, supplements and deficiencies etc. I found it hugely informative and interesting and sparked off other queries in me that I further researched. I bought it 4 years ago and I keep referring back to it. For example, Selenium can be toxic if you have too much, Vitamin B3 can have negative effects, so can iron. You could look at your immune system - things like glutathione, copper (is essential that copper is in balance with zinc, so too much zinc leads to too little copper etc) - I really can't suggest Perfect Health Diet book enough, especially if you have an inquiring mind.

    Another thing which you might find thyroid speficic clues in is - The last item (is it the last, I think it is) slips in without much said about it, but the fact is that many household chemicals (cleaning and washing and personal hygeine and cosmetics etc) have chemicals in them which act estrogenic, and this can mess your system up a lot too. You can go along way to reducing the toxic load on your body be eliminating pretty much everything, and replacing with Simple Soap (for personal and hair washing - bit of a pain if hard water, rinse with vinegar), Tri-Sodium-Phosphate for laundry powder, white vinegar diluted plus baking soda for household cleaning, and make sure you have a plain natural no-fluorine toothpaste (eg, like Lavera, but there are a few), using a xylitol solution for a mouthwash (I've never had cleaner teeth). I would't underestimate this.

    Hope you find a way for you... Happy to help further if you'd like.

  • Hattie007, Just noticed I've commented a lot on your thread without really addressing your main question of whether this is too much T3.

    Looking at your results, the general guideline is to get freeT3 into the top third, and yours is only a little over halfway through the range. So in fact you've got a lot of room for increases. A complete replacement dose of T3 is said to be 60mcg, so as long as you carry on reducing the Levo, there's nothing unusual about getting up that high.

    The only thing that might be a bit strange about your dose is that you've kept the Levo fairly high. Usually when adding 10mcg of T3 you'd reduce at least 30mcg of T4. The ratio is under debate, so it could easily be 40 or 50mcg (in my self medication I treat T3 as 4x as potent). It may be at this point that your Levo hardly matters, so you might want to just phase it out.

    You and I are a bit similar, in that your freeT3 is quite low relative to how much replacement your taking. It looks like you will need a lot of increases to get all the way to the top of the range. I've been raising my NDT, and am now on a high dose. A lot of times I increased and my freeT3 didn't change at all. I suspect that I have thyroid hormone resistance, and the hormone is not getting into the cells. I've now made the decision to take my freeT3 over range, as I'm still very immobile. It's still going slowly, even though my freeT3 is now over range, my last increase didn't increase it at all :p Although you also have several low vitamins to deal with, so the hormone may work more effectively once those are improved.

  • Hi Hattie I am on 75mcg T 4 ie 1 50 mcg tab + 1 25 mcg tab & 25 mcg Uni Pharma T3 split with tablet splitter so 12.5 mcg morning and 12.5 mcg afternoon. Thyroid results:

    TSH 0.56 mu/l (0.34 - 5.6)

    Free T3 5.3 pmol/l (4.0-6.6

    Free T4 9.5 pmol/l (7.9-20)

    My endo said these results are perfect. She also wrote TSH level below 0.10 means doses too high. That applies to you. TSH should be less than 1 but higher than 0.2. Adjusted by altering T4 dose. 10 mcg T3 = 50mcg T4. Think you need to rethink with endocrinologist's advice.

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