I am 4 months post TT and had T3 added to my T4. I am not totally adjusted yet, but I feel like a different person - I finally feel like there is light at the end of the tunnel . I still have some anxiety and heavy heartbeat, as well as some muscle aches, but it gets better as I add a little more T3 each week.
It is worth trying T3 with your T4 before you switch to another therapy. This way if it doesn’t work, you can always go to NDT and know that you tried the other stuff with no results. Hope this helps! All the best.
Some of your muscle aches (not all) are likely due to permanent damage from the statins you were taking. That is not always reversible. I was on Synthroid for 6 weeks before my doctor added T3 because it was clear I do not convert T3. I don't know how long you have been on levo, but if it is less than 6 weeks, it may not be either long enough to get results or not a high enough dose. Believe me, I'm not trying to "sell" you on levo, but if you can get the right dose, it is really easier in the long run to manage the one drug. I have been through so many iterations with both the T4 and T3 to even come close to where I feel better - and not there yet! I was splitting the dose of T3 in am and pm and then discovered I need to take it together with my Synthroid in the am for better results. That took weeks to figure out. Managing two drugs is twice as complicated! Plus, you will have to change one at a time before you know which one is working or which one has to be reduced or increased. Most people I know have taken a year to get to feeling what they call "normal".
Patience with all things thyroid is required and helps a lot once you accept it is a very long road to get to where you need to be. Nothing happens fast with thyroid - whether it is disease or results from medication. It's exhausting, frustrating, upsetting, and there - I've run out of adjectives for it. And it's trial and error till you get it right. One thing I have learned on this forum is that there is no single right answer for anyone. Everyone here seems to have to conduct an experiment of one - themselves - to get to where they need to be, and there are no shortcuts for anyone. There are more combinations of doses and meds than I have ever seen. I have also found from reading numerous posts here that when people change meds or dosing too quickly or too often, their results are not good and they end up suffering more.
Bottom line - I know you are feeling miserable and I empathize. I read some of the posts below and some of our experienced folks seem to feel your levo dose is insufficient. As I suggested in my original post, going in stages helps. I started on levo alone in increasing doses until it became clear I could not convert and I also could not tolerate large doses of levo. I was adding 1.25 mcg of T3 every week to get to current dose of 7.5 mcg (over 5 weeks) because I am very sensitive to dose changes. I would suggest staging your medication journey in the following way:
1. Increase levo to see if it helps after 6 weeks; (I don't know how long you have been on it already)
2. If not, add T3 in incremental doses with reduction of levo; (a guide you can use is 25 mcg levo=5 mcg T3 - you will need to give each dose of T3 a week to see results and you may feel worse before you feel better; You may also plateau and feel better for awhile and then feel worse again, which means you need more of one or the other depending on your bloodwork;
3. If that doesn't work, try NDT and see if that helps you.
I hope this helps you out - and I wish you all the best. Hang in there.
Hey my friend I have to agree - I cannot take t3 in split doses at all, I feel terrible then! I need to take it with t4 altogether in the morning. Hope you're doing ok xxx
HI Cup: I'm doing better - not there yet but on the way and getting closer to my destination! I hope you are doing better too and that your dream job is going well. Sending hugs!
Heeey, that's amazing! So I was getting there, then my ft4 dropped dramatically after small Levo reduction (25mcg), now my ft3 is even lower, but I will be now increasing t3. At 125 and 10 now, going up to 125 and 15. Fingers crossed for us big hugs!
I should add that my thyroid situation is very different from yours - but I am answering the question you asked. I hope others with more experience in reading test results will post tomorrow - I am not expert on that at all.
Keen to see the answers on this, I’m now in 200mg of Levo and have seen no benefit since starting Levo 2 years ago. Joint aches, muscle aches and cramp as well as some weight gain. Discussed alternatives to Levo with GP, was told there are non on the NHS , so will read with interest
Have a look on the site of Thyroid U.K. who run this forum. There is lots of info that may help you. There are pointers as well as to what helps and what does as you may be doing something that isn't helping you-always best to check.
I was diagnosed with Hashimotos in January and put on 50mcg of Levothyroxine, I was tested and then increased to 75mcg around 6 weeks later, then eventually raised to 100mcg of Levothyroxine where I am now. My TSH is around 1 and FT4 and FT3 the high end of normal yet was still having the following symptoms:- brain fog, low body temperature, tireness and a massive energy slump around lunchtime every day where the tiredness and brain fog would really kick in and I'd struggle to get through the working day. I was really frustrated as on paper my results were 'good' and I didn't have a problem converting. I decided to add in T3 and someone on here helped me source it from Turkey.
I've been taking 5mcg of T3 for over a week now and I am pleased to say that those symptoms have been greatly relieved, I might add in a further 5mcg early afternoon in a week or so as I still notice a bit of a dip in the afternoons. When I started Levo I felt well for about a month and thought I have this whole Hypo thing nailed....then it all went downhill. Adding T3 has been the only thing I've down where I've noticed an improvement. All the Levo increases resulted in me looking 'good' on lab results but feeling either worse or no better. I'm hoping and praying that this will continue.
As for your results, you are still undermedicated so at this stage you can't really say that Levo is not the drug for you as you may find that you start to feel better as you get optimal. When were you diagnosed? Once your TSH is around 1 you can look at your T4 and T3 and see how things are looking with the help of some of the knowledgeable peope on here. You are on such a low dose that its too early to say whether you may need to try something else. Obviously if you DO later need to try something like T3 or NDT you will probably need to source this yourself as you will unlikely be able to get this on the NHS. You could see a private endo but that would leave a bitter taste in my mouth. Personally I feel more than confident enough to source my own medication and monitor with bloodtests. I used to live in the Middle East and you can buy most prescriptions medicines over the counter then and walk into labs and get whatever bloodtests you want without a referral and you take charge of your own medical notes and so you tend to get pretty self sufficient in managing your own health. So for me, self sourcing T3 from Turkey is really no big deal. At my next Endo appointment I will tell him I am self medicating and quite frankly he can like it or lump, I'll go it alone if need be. So, remain positive, you still have a way to go before you can tell if Levo is working for you but feel safe in the knowledge that you can take control of your own health and self source if need be. Don't let the limitations of the NHS stop you from reaching good health. Good luck to you.
Your T3 looks quite good so you seem to convert t4 quite well, I would increase T4 until TSH is about 1.0 and symptoms improved you may not need any T3 and if you split the Levothyroxine dose into 2 or 3 you may continue to get good conversion if not maybe add 5 ug T3 The muscle aches are most likely low T4 since they are a main site of T4 - T3 conversion and designed to run on this!
I have never heard that T4 should be multi dosed to enhance T4 to T3 conversion...given its long half-life (about a week), what would be the benefit of taking T4 two or even three times daily...?
However, I have read that some get better results taking their T4 meds at bedtime rather than in the morning.
half life is a concept more suitable to Radiation emission than T4, T4 in the body does not decay like a radioactive element it is in a dynamic equibilibiium between its metabolic clearance rate and its production rate with bound and free proportions all controlled by complex feedback loops varying according to physiological need and status. The so-called half-life is roughly the metabolic clearance rate of T4 taking into account all the above and its volume distribution in the body. You could also think of it in relation to how long it takes overall system to rebalance after changes in T4 production, which for hypothyroid patients is often almost entirely and only the relatively large (unphysiological ) doses of exogenous T4 (Levothyroxine). Research indicates that rising T4 levels inhibit the rate of T4 to T3 conversion and that normal T4 secretion is pulsitile but steady over 24hrs not a sudden massive influx via the gut as in hypothyroid hormone replacement regimes! Research also indicates that TSH stabilizes between 2 - 6 weeks after significant changes to T4 replacement. If T4 replacement doses, for the sake of convenience, tradition or doctrine is large enough to temporarily cause excess free T4 (which is what Levothyroxine is ) intra-cellular conversion by DI02 enzyme will potentially be reduced - by the level of T4 rather than by subtle and natural variations according to the normal healthy feedback controls such as TSH (another reason for NOT suppressing TSH ) .
PS metabolic clearance Rate is determined by what the body needs eg. converts to T3 , reverse T3 or excreted and only a minimal amount is excreted. In other words half-life is largely determined by our prevailing physiological biochemistry and not merely an inherent and immutable chemical characteristic of thyroxine (T4 )
thecat68, I don't know if it has anything to do with half life, or with conversion. But my instinct tells me that split dosing T4 is potentially a teeny step nearer to what the thyroid would do if it was in full working order. As I understand it, both T4 and T3 are secreted by the thyroid pretty much on an 'as needed' basis. It is not squirted out in once a day dollops like we're told to do with exogenous thyroid medications. Just as with T3, once a day dosing potentially gives high peaks and low troughs of hormone in the blood, which some people do notice. Not long after I was first diagnosed years ago, I experimented with split dosing T4 by taking some at night and some in the morning. If I took the full amount all in one go, I didn't feel right for a few hours after taking it. Splitting it definitely helped smooth things out a bit. It's probably an individual thing though and most people may not feel any difference. As with all things thyroid, what works for one doesn't necessarily work for another.
That is interesting, as most doctors/patients never mention this. The discussions always seem to be about the potential benefits of multi doing T3/NDT (because of its T3 content), not T4 drugs. I think this is the first time I've ever seen this discussed.
Hey Alps Holiday. Sounds like you’re frustrated which leads to a lack of patience 😬 You’ve only just started on the lowest dose and you now need to increase to 75mcg. Your conversion looks good, no need to be thinking about alternatives atm.
I wonder if there is a stage were one is undermedicated enough for it to actually be counter productive and so it feels worse but once you jump up to a more optimal level you then symptoms are relieved?
Your TSH is too high. I recently read that a healthy individual (without latent thyroid disease) has a TSH between 0.5-1.0. For some people, getting the TSH down to 1.0 or slightly below can be enough to get symptom-free, provided they convert enough T4 to T3.
So the first thing to do would be to raise your T4 dose to 125 mcg daily and get retested after 4-6 weeks. That should lower your TSH somewhat, raise your FT4 levels and, if you convert well enough, your FT3 levels as well.
Thecat68, I believe the figures you quote of 0.5-1 is a bit low. This page contains an interesting graph of TSHs in healthy people: web.archive.org/web/2004060...
In the past I used to quote 0.8-1.8 as a healthy range. I've recently seen reputable sources putting it as high as 2.
Once we're on thyroid hormone replacement this all changes. Those on treatment tend need a lower TSH to feel well, usually 1 or below.
Thank you for that. I had been trying to track down where I had seen information about testing on healthy people vs. standardizing the test on the sick people your doctor sent to the lab.
But you may very well be right...I remember reading once that a potential problem is that the so called normal TSH range is based on the average lab results of X number of patients, some of whom are borderline hypothyroid, and that would be the reason a TSH as high as 4 or even 4.5 is considered within range, although many enlightened doctors claim they see symptoms of suboptimal thyroid function appear already when the TSH is above 2...
Thanks for the interesting link! I think it's always very hard to find out what optimal levels in healthy people are. Personally I'm very interested in the question, because I think it's very useful in analysing results, particularly in people who are borderline.
The link is Westin Child's blog. I believe he is popular on the forum, but I don't know his work personally. What he says is a little bit confused. At some points in the blog post he says a TSH of 1 is optimal, at others that it's lower than 1 that is optimal. Finally he concludes that his cut off for knowing someone isn't healthy is 2. My own personal cut-off is 2.5, I believe that once it passes 2 something is wrong, but I use 2.5 because to give a cushion. I believe my own cut off is pretty low, so it surprises me to hear anyone go even lower!
I still can't get the link I posted to work. But luckily Humanbean posted the main graph on the forum years ago, and it can be seen here: healthunlocked.com/thyroidu...
This study attempted to measure the TSH in many people without thyroid disease. In their sample more than half the people had a TSH over 1, and a tiny number of people went as low as 0.5. The median TSH is 1.5, with the average/mean a little higher. I don't think this is a perfect study, but a bit like my own cut off, my sense is that if this study is making mistakes they are estimating the healthy TSHs relatively low, not relatively high.
Westin Child goes on to say that most people aren't healthy, not just people who have thyroid illness, so that might partly explain why his cut off is lower. He may be using it to identify people whose TSH is temporarily raised by other illnesses as well as just thyroid illness. On this forum we tend to be advising sick people who are trying to find out if low thyroid function is the reason they are sick. WC is examining these people personally and is able to treat them for other illnesses. On the forum we're only looked at blood test results and brief text descriptions. Here I think we have to be a bit more cautious than a doctor in a one-on-one consultation can be.
I got your bookmarked link to load. This is in the notes below the graph:
* The centre of the Reference Range for the test kit used in the study is 2.35. Almost 85% of the healthy population have a TSH reading below this value.
* The 2.5 percentile point (ie the point which excludes the bottom 2.5% of the population) is at 0.48. The 97.5 percentile point (ie the point which excludes the top 2.5% of the population) is at 3.6. The range between the 2.5 and 97.5 percentile points (0.48 to 3.6) is much narrower than the test kit’s Reference Range (0.2 TO 4.5).
* This narrowing of the range would suggest that the reference group used to calibrate the test kit possibly included people with some level of thyroid illness.
* This narrowing of the range between the 2.5 and 97.5 percentile points would potentially have been even more pronounced if all samples had been tested for Thyroid Peroxidase Antibodies.
More than "borderline" hypothyroid. Doctors should probably be treating anyone who shows up with symptoms whose TSH is more than 2 or 3. That's why I said most doctors would not recognize a case of overt hypothyroidism if it bit them on their arse.
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Thanks the cat 68
If I felt no improvement at all on 50 levo, yes I would try and increase
However, just 50 levo has definitely mad me worse, so time to try something else
Thank you
Alps holiday
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Yes, but it's like someone else wrote - 50 mcg of levo is a starting dose, and you will most likely feel better initially, then worse, as 50 mcg may be enough to lower your own thyroid hormone production, yet not enough to compensate for said loss of thyroid hormone production, so it makes sense that you feel worse if you stay on a starting dose for too long. You need to raise your levo dose every six weeks or so until your TSH is around 1, and then look at your free Ts - especially your free T3 levels to determine whether you convert T4 well enough.
Levo may not be ideal for you, and you may very well be one of those people who need NDT and/or T3...all I and many others are saying is that it's a bit early to tell, as you are still on a starting dose of levo and not optimally dosed yet.
You are expecting to much to soon, it takes many months to get to the right dose and you are only just starting out. Taking NDT to T3 is not a magic cure and many people don't get on with either of them, you need to be patient and give Levo a chance.
And don't forget that nutrients need to be optimized for thyroid hormones to work well. Ferritin, Folate, Vitamin D3, and Vitamin B12 need to be tested.
It's common to feel worse on a low dose, as we have said you need to increase dose and stick with it but if you are determined to abandon Levo then good luck, it may well not be an easy ride.
Just a general comment. I think whatever path you go down needs to be worked at and you need to understand your body as well. It may be that a newbie struggles because they are still learning and so make more of an effort with a different regime. Looking at bloods from others that are struggling the main problem is either no one has seemingly taken time to sort them out, whether that's ignorance of what they are doing, scared they might do harm so again ignorance or they think once on medication alls well so again ignorance. So we see many presentations of doses too low or conversion or possible conversion issues. It's not necessarily the choice of medication though eventually Levo stopped ticking boxes for me. there isn't an easy fix and we need to learn all we can. The strength of this forum is we understand from our own experience what it can feel like and are happy to talk about our journey which in a way never stops as we have to be vigilant and take on changes we may see in our results. Sharing our experiences can help others even though we may feel we have t a lot to share, we may have the missing link. So many haven't heard that optimal vits can make a huge difference so share if it helped you. Let's be more positive and spread the world that there are positives to be found but it can take time, nothing is a quick fix despite what your doctor may tell you! I was on another forum some time ago now and there was a comment that there weren't many success stories so getting despondent, we need to show fellow sufferers that we need to look and learn and hopefully improve. It's not one 'cure' helps all. When I started out I had loads of suggestions-I made a list! Then I put them in order of what was easiest to do! I wasn't being lazy, well may be a bit, but I needed to see that list reducing. Some were added back in as possibly better long term. Not only did I find things that I felt made a difference but it also focused my mind in a more positive way. Sorry just felt I had to put this out there as so many struggling and aren't getting help from their doctors.
I am in the camp that says it is too soon to be thinking of changing, you are not yet optimally medicated, and your body has not had the opportunity to recover from whatever issues were being caused by a failing thyroid - and you can't know for sure that your aches are being caused by your failing thyroid or the treatment for it, there may be nutritional deficiencies underpinning it, or something else entirely. 39 days is no time at all, and returning to good health once a failing thyroid is being addressed is a marathon not a sprint.
This is the first time I've commented here but I wanted to encourage you. I didn't do well on levo and am doing well on a mix of t3 and ndt. My GP monitors my bloods for me but leaves me to it. I climbed up Durham Cathedral Tower last week, all 328 steps and was thrilled. I notice your ft3 is quite low, it should be in the top quarter, and for some, right at the top of the range. I had a heated discussion 3yrs ago, with my Endo, about t3, he said the top third was high enough to be well, I disagreed (I still had symptoms even though I had sorted all the relevant vits) and sourced my own meds. It's not easy but I feel like a new woman since taking control and self medicating, no pain or symptoms of any sort unless I get stressed but that's a result of 15yrs of suffering pre-diagnosis and I'm working on it. You can be well, just make sure to do lots of research first.
As we're all different I don't expect it will help you to know my dose of ndt or t3 but currently I am taking 1 grain of ndt and 37.5mcg of t3. Before the warm weather it was 50mcg of t3 but I've cut back due to heat intolerance. I still feel good. At last bloods my ft3 was slightly over range and my ft4 at the bottom of the range (obviously as am taking only a small amount of T4 that's in the ndt). Tsh is obviously suppressed due to my thyroid bloods being optimal. My vitamins are all optimal too. My d3 is high in the range (it took 3 years in 10,000iu per day with co-factors) and I still supplement for maintenance. My b12 and Folate are both high too and I still supplement them also. I take ashwaghanda for my adrenals and other b vitamins.
I was diagnosed with a tsh of 89 in 2015 and it has taken a lot of research and trial and error to get here. My only regret is the 15 years, at least, that the medical profession left me to suffer using tsh only bloods. I don't bother them now, I self medicate and am doing fine.
Hope this answers your questions and good luck. We can be well
I'm doing very well thanks. The trick is to get all your vitamins and minerals optimal before moving onto ndt. I took levo for a year (but was never well) while I fixed my vitamins and minerals before starting on ndt. I then suffered with adrenal stress (15 years undiagnosed, thank you Drs) so I lowered the ndt dose and added in t3. I get tired sometimes but overall I am much better than I've been in over 20 years. Climbing the Cathedral Tower proves it. I'm not going to get my 40s and early 50s back but I'm doing ok
I was put on levo and wasted my life away for years. I couldn’t live like that so I self-sourced NDT from Thailand and started self-medicating. Gained energy, mental clarity and lost a bunch of weight the very first month.
I just started with 1 grain and increased by half a grain 10 days later. My sweet spot is 3 grains a day. But everyone is different. I’ll PM you my source.
I should add that I do not agree with everything this doctor says. For instance, 50 mcg of T4 is usually considered a starting dose in young, otherwise healthy people, not a maintenance dose. There is also some controversy whether reverse t3 really blocks the action of free T3...plus, NDT is definitely not cheap everywhere, definitely not in Europe, which is why many resort to Thai NDT...however, I think this article gives you a good overview of the various treatment options and their pros and cons.
Hi I had severe muscle pain on levo for many years. I was dx fibromyalgia. I switched to NDT and within weeks the symptoms of fibro had gone. Have a look at the work of Dr John Lowe on fibromyalgia and thyroid. Hope you feel better soon.
Alpsholiday, the first question I always ask for a person who isn't getting on well with Levo is whether they're on the correct dose. For the vast majority of people who have had a bad experience on Levo, the problem is that they're on the wrong dose. This is a treatment that has to be tuned to the individual needs of every patient; it's not like a paracetamol where you can just open the packet and that dose works for everyone.
50mcg is a starter dose of Levothyroxine, and it's very common for this to make you feel worse. Low dose Levo will be enough to mess up your body's own regulation systems, but isn't enough to do you any good.
Best practice is to stick with this dose for 6 weeks, then go for a new blood test and adjust the dose. Stick on the new dose for 6 weeks and then retest an adjust again. Carry on like this, at first you'll be increasing every time, until your blood tests look good and/or symptoms resolve.
This process can easily take you six months to get onto your own personal ideal dose. This is a slow acting treatment and a very slow process to get our hormones back in shape.
You've got a few days to wait before you can have your first blood test and adjustments. If your GP hasn't asked you to come back for a follow up, be pro-active yourself and go in saying you still have symptoms and need an adjustment.
As others have said, it’s much too early to worry about whether you’ll need more than Levothyroxine. And in all honesty, you really don’t want to be in a hurry to write levothyroxine off. The alternatives just aren’t readily available. Levo - contrary to appearances - works for the majority of people. Those people who are happy on levothyroxine have no need to visit a forum like this one.
Hopefully your doctor will be a sensible one who recognises you’ll need a dose increase soon.
I agree with what you say...taking T3 or NDT can be very tricky. It can be difficult to find the right dose, or rather the right T3/T4 ratio for you as an individual, and most doctors will not be happy with your lab results as T3 and/or NDT is likely to result in lab results doctors are not used to interpreting and don't feel comfortable with...which is why people diagnosed with hypoT should always try out levo first, try to raise it high enough to feel well, and rid themselves of all symptoms, before considering adding /switching to T3. Take it from someone who's been there...most doctors freak out at the sight of a suppressed TSH and lowish FT4 levels (very common when on T3/NDT). They will claim that T4 drugs are the most modern and safest way to treat low metabolism, and that T3/NDT is old-fashioned and less safe. So, being on anything but T4 only drugs means you will most likely have to fight doctors who tell you to go back on T4 only, and that can be very tiring...which is why I'd encourage you stay on T4 only for now, raise it slowly, and see what happens, before considering adding T3 or NDT. Be sure to post labs here and ask for members' advice.
I know all that, Alpsholiday. I’ve been on NDT for 4 years. But what I would say is that it can be unnerving to have to source your own drugs. There’s the constant worry about supply, whether you’re getting the real thing or a fake, and, perhaps the worst thing of all, going against your GP’s advice (not because that’s inherently wrong but because every medical complaint you go to see your GP about from here on will be blamed on you “dangerously self-medicating”.
Many of us here do it anyway—you’ll be in good company. But 50mcg of levothyroxine is a low dose. You really can’t say it doesn’t work for you yet - you may need 100mcg or more to feel better. You may need to fix other nutritional deficiencies like B12, Vit D, iron etc. For example, if your iron is low you may find the T3 in NDT too much to handle. You haven’t had another blood test yet so how do you know what your baseline is?
Please don’t misunderstand, I totally respect your decision to try another route. But do it mindful of the pitfalls, ok? You can’t fix thyroid issues overnight - it’s a lengthy process of gradual dose increases because if you try to go too fast you’ll feel even worse than you do now.
Hope you don't mind me asking on this thread, it's slightly related. Just wonder if anyone knows if you can get T4 from anywhere, without prescription, in the case of GPs and endo's refusing to up your dose when you still don't feel well and there is room for improvement in blood results.
Well, here is my two cents worth. The first medication you will be prescribed will be Levo - because is works for the greater number of people (so fair enough). The next cut is that Levo would continue to work if docs would let the dose creep up to the level where enough T3 is being generated for the patient to feel well. What happens though, before the patient reaches that point it is detected that TSH is very low and Blood Pressure is probably going up to unacceptable levels. The doc then panics and reduces the dose of Levo - and so his patient will never recover - they need that T3 that the doc will never allow because of the low TSH and (possibly) high blood pressure. So the patient is stuck, and ill.
The next step is for the patient to take NDT or supplemented T3 - and the doc will not allow this (for god know's what stupid reason).
The patient must now strike out on their own. Those with very open minds and a lot of courage will do this, and will somehow acquire T3 or NDT, and they will survive. It is a very sad and shocking situation. Even when you think you have it under control you will be sabotaged by the stupid variety of Medics. It happened to me just three weeks ago. It is very difficult to say to your doc, "Not on your life, you are not reducing my meds just because my TSH is low" because it implies that he doesn't know what he is talking about - which is true, but we must not say or imply it. I did not say that, I waited and sent him a politely worded e-mail - which said the above.
So in summary, you can get well on Levo, but you have to break the barrier where your T3 gets generated but your doc will allow you to keep your very low TSH. If your blood pressure goes up, that is a different story, that cannot be allowed.
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I have to agree - I cannot take t3 in split doses at all, I feel terrible then! I need to take it with t4 altogether in the morning. Hope you're doing ok xxx
Asked to reduce to 25mcg levo
Advice on blood test results please.
Results in from medichecks. I'd love some input on them please.
T3 taken away, looking for a new source please :)
First Ultravit Test Results
