My main symptom, which I would dearly love to see resolved, is achy muscles, particularly the vastus medialis - as I am a keen cyclist.
I tried Levo 50 for 5 weeks, then, NDT 1 grain for 4 weeks - I took both of these on an empty stomach 1 hour before breakfast
Neither helped the muscle aches, despite the TSH coming down to 2.75 on 20/9/19 and I can honestly say that my muscles felt more achy after taking these meds.
However, I did read a post on here where someone had success only after splitting their thyroid meds and taking them 4 times a day, but have not been able to locate it again!
Maybe this is because splitting is closer to the real thyroid action of releasing the hormone 24 hours a day?
And of course, I fully appreciate that splitting may well clash with always taking the meds on an empty stomach. And can anyone say what percentage of the meds of the meds is NOT absorbed, if taken with food?
So, I would be very grateful to hear your views on splitting the dose and would especially like to hear if anyone has had success ONLY with splitting, as opposed to taking it all in one go
Thank you and good luck in your own journey back to good health!
Splitting the dose might help some people tolerate levo, but will only get rid of symptoms if they're taking enough of it, and have been on it long enough for it to have a chance to work. You're expecting instant results from something that never gives instant results, and when you don't get them, you give up. Thyroid hormone is not aspirin, and if you don't have patience then you are never going to get better, not even if you took a little every hour, on the hour. That's not the way it works.
Fraid i'm with GG on this one. Every time i read one of your posts, i think to myself that you re just not giving yourself a chance.
Not trying to be harsh. its frustrating when your illness interferes with the way you want to live your life, and i totally get that. but it s now time to step back and give yourself time to get well.
I too need t4's and t3's and I have 4 grains of NDT and 6ng (sorry that should say microgrammes but my keyboard has a mind of its own) of liothyronine daily. I take 1 grain at 6am, 10am, 1pm and 5pm, and the 6ng when I expect to need a burst of energy, eg. with my 5pm when I have a special dinner to make, or 10am if it's a major shopping day. This is because your t3 only lasts for a few short hours in your bloodstream. My NDT and liothyronine contain pure t3 so I need to space it through the day.
My daughter has just started to take thyroxine, because this takes up to 2 months to make its way into the bloodstream but lasts for up to 6 months when there, you only have to drip it into the system daily, so she takes all of it it when she awakes.
Another daughter takes her levothyroxine early morning, then her liothyronine split through the day.
I recommend you take both your levo and NDT, if your bloods and health look like they need it and your physician agrees. Take levo in the morning, and your NDT just before you need it.
If your physician is not happy with this then get a new one. In the meantime you really need to keep a check on your heart rate, bp and sugar levels as changing doses will affect these and give you a good idea of if you are doing this right.
T3 has a half-life of 24 hours in the blood. That means that if you take 10 mcg at 8 am one day, by 8 am the next day there will be 5 mcg left in the blood, minus what got into the cells. The T3 that gets into the cells stays there for about 3 days.
Levo (T4) gets into the blood a few hours after swallowing it, but takes six weeks to be fully processed by the body. It has a half-life of 7 days.
according to this you are right: emedicine.medscape.com/arti...; but my consultant told me to take it at regular intervals over the day for constant optimal value, and extra when you're about to do something for a boost, and this works. I'm not sure of it's half life which means that it reduces in value by halving over a period - I suspect everyone is different; although I'm pretty sure I don't want half a life use, I want optimal use.
Well, you can't avoid half-lives! That's the natural order of things. And has little to do with being optimal. And, I'm not sure what 'half a life use' means. Never heard of that before. But, anyway, what needs to be optimal is what is in your cells, rather than in your blood, which you can't measure. But, as I said, it stays there for about three days. So, if you keep topping it up at regular intervals, it will stay at the same level regardless of the half-life.
No reason why you shouldn't multi-dose if that's what works for you - although it doesn't work for everyone. Some people need to flood their receptors by taking it all in one go, in order to get enough into the cell. But, at least get the facts right.
I'm sorry, I wasn't aware I was being rude. In fact, I was being extra careful not to be rude, even though you were mind-bendingly condescending to me. Surely you've been on here long enough to realise that consultants get it wrong all the time? They don't have the education in thyroid to understand all the intricacies of thyroid. One should always double-check everything they say.
Very interesting post, I have recently started on a small dose of NDT (1/4 grain)......also take 25mcg Levo but intend to increase NDT gradually. A member of this forum considered that it was not advisable to take both. Any opinions? Anyone?
Don’t listen to the critics on here, we are all uniquely individual and there are a lot of complex variations both genetically and in our current ecology (lifestyle, habits etc) affecting our experience with all this. I have personally trialled both levothyroxine and NDT and liothyronine in almost every dosing regime imaginable. Too much levothyroxine seems to have negative feedback effects on T4 to T3 conversion, cumulatively and in single doses if these are more than our bodies needs and set points. This is consistent with the science on intracellular thyroid metabolism. Too much liothyronine or T3 in NDT has almost immediate overdose consequences which are also cumulative if we blindly persist in repeating the overdose. T4 cumulative effects take longer to gather speed and longer to disappear. However t4 has direct effects of and in itself, it is not simply a neutral carrier pro-hormone, its not akin to simply filling a car up with petrol that only does something when you rev the engine! So, and as you say, the natural pulsatile secretion of thyroidal T4 is a 24/7 business and balances both fuel requirements and engine loads via complex multi factor signalling systems all over the vehicle (our bodies), to use the car engine analogy again. It’s almost a no brainier that t4 should be replaced in as close a way to naturally occurring thyroidal secretion as possible. Easier said than done, which is why the single shot fasted dose regime is the norm (mainly as a sop to absorption consistency and ease of use). Having said that I never take more than 50 µg levothyroxine in one hit and I am currently trailing 5 times 25 µg over 24 hours, which is not as hard as it seems I simply take one before bed one on waking and one with every meal. Blood tests and symptom diary reveal the net effect of all this and since levothyroxine is so cheap if absorption efficiency is less than a single fasted dose then a slight increase can easily compensate. In an earlier trial I did of this regime changing nothing other than splitting the dose blood test revealed an increased level of free T3 compared to larger and fewer doses of levothyroxine. Having said that I still need 5 µg of liothyronine to go with my 125 µg of levothyroxine. And lastly, on the issue of whether or not you can treat this like aspirin, of course you can’t and it doesn’t seem to me like you are. Effects are noticeable after one week and settle between 4 to 6 weeks thereafter, although our bodies probably take several months to get used to any particular dosing regime once it is established after the first 4 to 6 weeks. One final point from my experience with levothyroxine in larger single or cumulative doses is that it can significantly affect levels of free testosterone by increasing SHBG production in the liver. I don’t know about women but for men this can have pretty devastating consequences and can almost make levothyroxine feel toxic if the affect on free testosterone becomes significant. This is another reason I split dose levothyroxine.
I disagree with what you say about the effects of levo being noticeable within a week...that's not the case for everyone, far from it. If you have under range FT4 levels when you start on levo (25 or 50 mcg depending on age and other conditions), it can take several weeks to feel the full effects of it, which is why we are told to hold for 6-8 weeks before retesting. If the effects of levo were noticeable within a week, there would be no need to wait that long between dose increases/decreases, and we'd recover much quicker once started on levo.
The effects of T3 are felt much quicker, of course - usually within hours.
There's a difference between 'feeling effects' and 'testing blood levels'. I feel effects from levo within 30 mins of taking it, regardless of what dose I'm on. But that doesn't mean my blood levels are stable on that particular dose. It's mainly the TSH that takes weeks to stabilise. Not the effect of the hormone on my body.
I've felt an improvement from raising my dose of levo within anything from a few days to a couple of weeks. Or recently not at all Not sure what's happening with the latter though. Maybe my thyroid is deteriorating as fast as the Levo is increased! Unless there's something else going on. Due a blood test next week so we will see.
But the usual pattern is, feeling better overall after x amount of days, then stable for a while, then a slow deterioration, usually after several weeks.
But every day is different so it can take a long time (4 months on one occasion) to be sure if the improvement or deterioration is real
This all helps to prove how different individuals can be. I feel effects of levo in my system within minutes. In the early days after diagnosis, I was told that feeling an effect within minutes was all in my head because it couldn't happen like that. And that split dosing of T4 was absolutely pointless.
But all these years later and nothing has changed for me. I still need to split dose, and still feel an effect from taking a single levo tablet. For example, my mood can be affected positively if I needed that dose, or negatively if I didn't, because too much T4 in one go causes me brain fog and low mood. Muscle weakness can lessen if I needed the dose, or if I took too much in one go, I will get muscle stiffness instead.
None of this mean that everything that hypothyroidism causes is permanently cured within minutes, of course!
In my experience the effects of 25mcg levothyroxine rapidly become noticeable whatever my prevailing dose or ft4 deficiency - and I have experienced many such combinations. TSH takes at least 3-4 weeks to stabilise, all other things being equal.
All to often on here people tread the wrong side of a fine line between advice and criticism, suggesting that someone is taking levothyroxine like aspirin seems much more like criticism than advice.
I am not Greygoose but, having read hundreds of her posts over the years, I think I can safely say she is NOT trying to be critical, only helpful.
The comparison with aspirin means that, when you've suffered from hypothyroidism for a long time, as a general rule, it takes time to feel completely normal again. It's not like the way you would feel when you take aspirin (or antibiotics, for that matter). Levo has to build up in the system over several weeks, and also be converted to T3. In order to achieve that, you need to optimise vitamin and mineral levels, as well as find the right dose for your needs. So it's like a jigsaw puzzle where all the pieces have to fit together, and that can take a lot of time and patience. In other words, unlike aspirin, thyroid hormone replacement is not a quick fix, it's usually for life.
I interpret Greygoose's reply to mean she is telling the OP not to give up, but to be patient and not expect immediate, drastic results.
I consider Greygoose to be extremely knowledgeable about thyroid-related matters, as well as one of the most active and helpful members here.
I totally Agree with you . greygoose is a straight shooter and says it like it is . I found over the years being on this forum greygoose to be Very Knowledgeable Caring and Very Sharing . When greygoose answers questions on the forum it's Never to be critical. greygoose is always trying other Very Helpful Options that can be very helpful that others can benefit from too .
greygoose is someone to be very Appreciated on our Forum .
"do you really have room for that much righteous indignation in your life"
Nope, I certainly don't. I'm not indignant just reminding us all, myself included, that reading things on a screen gives no idea of a person's true motives. So it's not worth taking offence
Just a thought... have you had your B12 checked. I have Hashimotos and B12 deficiency. I have 3 monthly B12 injections now. I do feel that during the month before my injection is due that my muscles really ache. Then as soon as I’ve had my injection my muscles are really good again. B12 deficiency does cause muscle aches.
I’m not sure why I couldn’t take my full Levothyroxine dose daily. When I split it I could tolerate it better. My blood pressure didn’t shoot up. I thought it may effect my blood levels but tests are fine.
I’m so much better now. I’m on T3 medication also now which has been my big help. I have a conversion issue. DIO2 gene test was positive.
For me it was B12 also that helped my aching muscles. When I get my 3 monthly injection it’s like I’ve had new legs fitted!
We are all different and this is very much a trial and error illness, if one pill suited all there would be no reason for a forum.
My experience of splitting dose kept me hypo, I need 75mcg T3 which I take all at once before bed. The late Dr Lowe said thyroid receptors need saturating, drip feeding keeps them starved but we all have to find what works for us.
You have to give each regime time and keep everything in balance, the longer you were hypo the longer it may take to get the body in balance. For me, keeping a daily journal of everything I eat, supplements, exercise and mood is crucial, I am often surprised how carb/sugar creep affects me and not keeping my iron up.
Things that helped with fatigued and achy muscles for me, high dose tumeric, omega 3's, b5&6, potassium for heavy legs, vitamin d and liver once a week for iron. I was a competitive sportswoman before my thyroid was removed 2009 I have not got back to that level of fitness since, this is my new reality, when I over do things I am floored for days. I have had to learn I can walk dogs daily but not run 8 miles a day. I had a massive list of symptoms most are gone but I still get phases of fatigue and joint pain, I was virtually house bound for a year so huge improvement from that! Your body is obviously struggling so you may need to be more realistic and lower your expectations for now, however all those people who thrive and are acing it on a low dose of levo, you will not hear their stories as they are well and prob not on a forum. X
Thank you, that is really helpful. I am still battling to get optimally dosed, and may need to accept that (at 71) I may never be as well and active as I used to be before becoming hypothyroid
Its such a nuisance all this thyroid stuff. I am 59 and my endo looks at me condescendingly and says 'what do you expect at your age!!!!' at 49 prior to TT i was running daily, did all the tougher muddier, iron man runs with army buddies. Mixed martial arts, horse riding, a life long surfer, good career and travelled all over the world. Of course I know as we get older blah blah but for me, it all stopped over night.
For me it took 4-5 years to find what worked and get stable, i am a million times better than the me at my worst but a world away from the dynamic woman i was. I sometimes wonder if my high octane life burnt my thyroid out lol gods way of saying slow down? who knows.
I certainly feel that my life was snatched away from me. x
I am well on 100micrograms of Levo which I take once a day and am one of the mostly silent majority. I don’t worry about taking it on an empty stomach.
I cannot really help other than to say my TSH is usually below one so perhaps you are just not sufficiently medicated yet. It can take a little while for it all to take effect.
I suppose if you always take it on an empty stomach it might not make a huge amount of difference as long as you take enough thyroid replacement to suit. Except maybe if you also take tea, coffee or high calcium food (like cheese), that is known to interfere with absorption?
Persistent muscle aches may have nothing to do with the medications or thyroid even but a lot with the stress levels, emotions, mindset and what is going on in your life which creates persitent tension. Have a look at dr John Sarno's MIndbody Prescription book for more information on the TMS syndrome you might be suffering from.
I take T3/T4 combo and I split them into 2 doses because its easier on my system and because I want more oomph later in the day. For me none of my thyroid meds have taken away my pains.
Hope you had a good day out, Alpsholiday. I'd love to be in the Alps right about now. You weren't explicit about which thyroid meds, but everyone seemed to intuit what they are.
You definitely want to be careful to pay attention to dose size if you start splitting up slow-acting thyroid hormones. Too much can give quite a wild ride with tachycardia for 24 to 48 hours.
I currently take all three (Levo, NDT, Liothyronine) and I do split the fast-acting ones across the day. For a while earlier this year, I took only T3 and I took it every eight hours. I felt well enough, but it certainly did complicate the timing of supplemental minerals. I have since discovered epidermal supplement delivery (pioneered in response to bariatric surgery), so if it works, that eliminates the conflict with mineral supplements.
When Dr. Lowe said that the patient's receptors need to be flooded in order to achieve effective treatment, he was creating a cognitive framework, or paradigm, to explain his treatment protocol's apparent success with fibromyalgia patients. Nobody can actually observe the untold numbers of hormone receptors within the approximately 37 trillion cells in a human body. We know that he says he experienced great success in treating patients, but I have never seen the percentage of actual cures versus people who were helped somewhat or not at all. Conclusions about what works are based on aggregates of individual experiences, but there are unknown numbers of variables that can make everyone's experience different in some way.
Although there are many helpful rules of thumb regarding how long it takes for the hormone to reach various regions of the body and be converted (not necessarily in that order) it seems there is enough variability in the genetic makeup of humans that there are countless possibilities for what might work. For example, I know that my liver works at a very fast clip on heavy-duty, controlled-substance sleep aids, making them good for a bit of a nap. And, if I were to guess, I'd say it's quick with the levothyroxine, too, and that differences in liver deiodinase activity and transport are probably why some people feel their thyroid hormones faster than others.
Since muscle tissues also convert T4 to T3, variations in deiodinase functions here would explain why some people can escape the pain by taking T3. But the transport of T3 from the digestive tract to the muscles is another link that introduces more genetic variables that influence effectiveness in overcoming pain. Some people may not be well suited genetically to achieving perfect outcomes from any of the available solutions.
I have some pretty good days and some not so good days. Everything has been examined twelve ways from Sunday and nobody can seem to decide if erratic energy production is problematic due to thyroid or something else. We old geezers are the canaries in the coal mine, as environmental toxins everywhere have had many decades to accumulate and wreak havoc. I pity the young.
I have found taking Magnesium Glycinate 500 mg to be very effective in eliminating my muscle aches. Took about a week for the effect to kick in, though.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Not sure what's happening with the latter though. Maybe my thyroid is deteriorating as fast as the Levo is increased! Unless there's something else going on. Due a blood test next week so we will see.
I haven't finished reading this thread but it seems that all that has been posted are attempts to advise not criticise!
Having had a total thyroidectomy in 1992 I was treated with t4 meds only. I now want to try NDT because of thyroid depression. My life is pa
Not sure If I should increase T3, feel like the hair loss has doubled this last week:(
Thyroid meds are making my main symptom of muscle aches worse. Any ideas why please? Thank you.
After decreasing NDT because of adverse symptoms, how quickly can i increase again?
