Still struggling with dose and timings 8 years into medication. I wasnt sure if anyone here has had success adding some Levo into their NDT regime in the afternoon, or whether its best to take Levo first thing in the morning (or bedtime if that the routine ) and or add a 2nd dose of Levo later in the afternoon or a 2nd dose being NDT....
Is there a rule, or everyone has to find their own?
As you can see I am all over the place trying to find my way out, and to satisfy the NHS ear bashing I had of having a suppressed TSH, which will further suppress if I increase NDT to feel better.
I was told recently "the problem with you is that your basing everything on how you feel, when you should realise your pituatary has shut down as your TSH is out of range and thats bad"
All true I suppose, and perhaps not idealbut what am I and others like me supposed to do, if not 'to feel better'.......if otherwise we are bedbound.
Any thoughts greatly appreciated, Every best wish, G
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Really there is no rule, you need to work out whats best for you. Of course Levo does need to be taken on an empty stomach an hour before food and caffeine containing frinks so that will have a bearing on when you might find it good to take it.
First thing in the morning or last thing at night are usual timings for many people.
I have always split my levo morning and bedtime. Then I added in t3 liothyronine. Once I had worked my way up to 20mcg lio I split it into 3 doses morning, around 4pm and bedtime. Because I could I started taking my levo in 3 doses at the same times .
It didn't suit my daily routine. It clashed with tea and biscuits at 4pm. So I ditched the third dose and take levo and lio morning and bedtime and I don't feel any different to when I was taking it in 3 doses.
Hello again Lalatoot. Thank you for taking the time to reply. Thats interesting to note your change of dosing time made no difference overall. It is a nightmare juggling meds versus supps and food timings, and also that T3 didnt keep you bouncy at bedtime.....I know some so find it causes restlessness.
I will keep on trying different combos, Every best wish, G
I have been on NDT since 2013 - many years before that, but had to go synthetic due to Armour availability way back when - have, only, taken it in the morning. I tried splitting the dose a year or so ago, but it did not suit my lifestyle of grazing! One of the administrators here had posted that the T3 in NDT releases slower & stays longer in one's body than the liiothyronine. As was replied to you, have to find what works best for you. Good luck - it's a journey!
Thank you terebol for taking the time to reply. I will keep on trying.
Every best wish, G
you should realise your pituatary has shut down as your TSH is out of range and thats bad
No, it does not mean your pituitary has shut down. It is still producing other hormones to stimulate other endocrine glands, for instance your adrenal glands. If your doctor means that your pituitary gland is not producing any measurable amounts of TSH because you are on a full replacement dose of thyroid hormone, then that is something completely different.
Those were the Endos words exact. That the feedback pituitary loop had ceased. But probably meant TSH was not producing a measurable amount to fit the NHS range.
I didnt have an answer other than what I said at the time to her, that it was not ideal and I understood that, but with an even a lower dose than I am on 1 3/8 grain NDT I am completely housebound etc and not doing great on this amount, still very symptomatic, freezing, wiped out ,low BP ,hair loss, gut etc etc.
I was thinking of trying Levo again, to see if the T3 side of NDT is holding me back...I just dont know anymore.
Thank you for taking the time to reply, every best wish, G
I have read that the TSH´s role is to react to the tiny amounts of thyroid hormone that our thyroid glands produce night and day, not to a whole day´s amount taken in one go which is what often happens when you take thyroid hormone, especially levo. So, it´s normal and most likely unavoidable for the pituitary gland to react by decreasing the TSH below the reference range as it reacts to the relatively high amount of thyroid hormone coming in (a healthy thyroid gland will not dump 100 mcg of T4 into the bloodstream in one go). So, in order to keep the TSH in range when on levo, you often need to stay undermedicated. If you are symptomatic with a TSH in range, doctors will often dismiss symptoms and blame them on other things, such as depression or an unhealthy life-style if you are overweight and struggling with high blood pressure.
So, the TSH is not made to react to thyroid hormone taken orally once or twice a day.
In other words, the TSH is not a reliable tool to decide whether you are under- or overmedicated or on the right amount for you. The doctors who claim that the TSH test is the biggest mistake of the 20th century are most likely right. It means millions of thyroid patients are kept undermedicated by ignorant doctors.
”the problem with you is that you base everything on how you feel?”
How “dare” you want to feel well, when you could be suffering, but your bloods are ok? What is your Endo on? Shouldn’t the whole point of medication be that you feel better? Well done to you for sticking to your guns.
I dose twice a day, first thing in the morning and mid afternoon 2h after lunch. That works really well and gives a steady dose of hormones. I have dosed 3 times (added another dose just before lunch), but that just got too restrictive with no food or caffeine.
Yep, quite appalling, I think I am still in shock as I keep talking about it....I cant believe one human being talking to another in such an unkind ,uncaring ,cruel way. Especially when you feel lousy. Finished me off by saying I was a waste of time, waste of her time and a waste of an NHS appointment. A low blow
I was too weak to raise my voice, and what would be the point......seeing the scathing letter back to my GP she had already added a few fibs in on matters not said or spoken about ,then ran me down....horrible . When I am stronger, I am reporting her, just in case she upsets anyone else. Another black mark on my notes !!
Is yours a mix of Levo and T3 or Levo and NDT.? I do find 3 splits a nightmare. Bedtime would be easier ,but I dont want to be wired at sleeping time.
Thank you for taking the time to reply, evey best wish, G
The mind boggles why such a person would want to be in the ‘caring’ profession? And if she gets a kick out of having power over people and making them feel even worse than they already low. If you can, do report her. She should not be allowed to make people feel so bad.
I took NDT and T3. NDT first thing, then T3 at lunch and then NDT in the afternoon. Very recently dropped the T3 as I don’t think it did me any good. I too am worried about taking anything before bed, but I have seen people on here take T3 before bed and getting good results.
just saw the post. I take levo and NDT and the timings are a pain. I tend to take NDT at 9:30am then another dose at 3pm, then another 1/4 grain at 7pm then levo at 9:30pm. Inbetween that I am on heart drugs and other meds so I just spend all day taking meds basically. Hope this helps
Ultimately I think it comes down to you choosing between having a TSH in the range and pleasing your doctor -
or having back an acceptable level of health and well being at the ' presumed health risk ' of having a low/suppressed TSH :
My TSH was low/suppressed even on a decent dose of T4 - Graves Disease post RAI thyroid ablation in 2004 -
and having been in an ever decreasing circle wellness for 2 years - plus 2 years seeing various O/P departments - none of whom helped me - and then referred to as a conundrum - by my doctor - I started self medicating around 5/6 years ago now and am much improved.
I take NDT once a day at around 2/3 in the morning - when nature wakes me up for a toilet break - and have plenty of time to fit in my supplements for ferritin, folate, B12 and vitamin D as it seems I still need to supplement these in order to maintain optimal results.
I run a yearly full thyroid panel for myself - and advised my surgery - in writing and delivered by hand - that I was choosing to self medicate with NDT - suggesting they might like a copy of my Private blood tests for my medical records - but never heard a word - though T4 was removed from my prescription after around 18 months.
I think your right, at this stage I need to please myself, as I am not 'a conundrum' but apparently 'a waste of time, a waste of her time, and a waste of an NHS appointment'......i kid you not....talk about kick you when you are down.
Ive been taking it around 6 am sometimes 5am if I hear the alarm, then 2nd dose 8 hrs later, but its not ideal.
When I took Nature Throid (no longer available) I could pretty much take the whole NDT dose or at least a large chunk of it at AM, but with Armour the T3 part seems to pack more punch and i feel a bit ratty........or I could have just deteriorated more. It is possible that the T3 side is hindering me....not sure.
I will keep trying, and thank you again for taking the time to reply. I need some of your bravery to stand alone methinks.
I think once you start to recover and know it's ' not you ' you'll find the courage to continue :
I have read that some people find Armour more powerful even when trialled against Thyroid S - which states the same content of T3 and T4 .
I wonder if and how the fillers play out in all this as all NDT brands are made from the same Thyroid USP powder.
I've only ever taken Thyroid S so can't compare any brands.
I just searched and saw Nature Thyroid states its content as 8 mcg T3 + 34 mcg T4 so looks to be less potent than Armour which states it's content as 9mcg T3 + 38 mcg T4 :
If you work out the T3/T4 ratio - Nature-thyroid is 4.25 whereas Armour is 4.22 :
Could Efra be a better option as it states content as 8 mcg T3 + 35 mcg T4 so nearer in actual content to Nature Thyroid and with a T3/T4 ratio of 4.37 ?
Ever tried just one dose a day ?
Thinking on as you have appealed to my loveliness !!!
Yes it could be all down to fillers as you mentioned. We do all break down and absorb in different ways, fascinating how we differ, and we are all the more beautiful for it I reckon.
No I have not taken the days dose of Armour in one......a bit wary...intuition? ...not sure... I wasnt wary taking the Nature Throid in one dose but that was 4 years ago and I am nowhere near as resilient now.I might try that by sneaking 1/8 grain up in AM dose and do it gradually.
I am not familiar with Erfa or Thyroid S, so I will look into them both.
And its truly lovely that you take the time, thank you.
I completely agree I was diagnosed with Hypothyroidism and Coeliac disease in 1997 I spent the next 20 plus years on standard levothyroxine varying my dosage from 50mg to 250mg ALWAYS feeling dreadful. Finally persuaded an endocrinologist to prescribe me Armour thyroid. Felt better for a few years then suddenly became type 1 Diabetic ( insulin dependant) now my new endocrinologist ( first one has been suspended for prescribing NDT) is refusing to prescribe any more Armour thyroid, I'm distraught, feel dreadful everyday and the medical profession still only go by TSH levels grrrr which NDT are you taking and where,are you sourcing it please?! Xx
Forum guidelines state that we are not allowed to name sources in the group. If you need a source for a medication then start a post asking for recommendations by personal message only. The post will be locked to avoid members inadvertently naming anywhere in the group.
I see that you are new to the group. People are more likely to share their source if you have shared information about your thyroid situation. Do complete your profile - click on your image icon to start. Use the freetext box at the top.
I will also include this warning about buying medications without a prescription.
When you receive a message with a recommendation, please do not assume it is genuine.
Scammers are joining the forum on a very regular basis and messaging members with their assertions that they have successfully purchased xyz medication from zyx source.
First, check the profile of the member that sent you the message. Are they a long term member with an active forum posting history? Or are they a recently joined member with little or no posting history?
Once you have what you think may be a genuine recommendation, please message a forum admin to ask whether the admin team have any feedback on the source you've been given.
Admins are not allowed to recommend sources, but we can tell you what, if any, feedback we've received about the source you've been given.
⚠️ Don't part with your much needed money until you are as sure as you can be that the source is genuine.
Scammers often join the forum and post a 'fake' story about their thyroid journey, that includes mention of self sourcing their thyroid meds. This is to encourage members to ask them where they purchase their medication without prescription.
Can you PM me please for those details, I dont think we are allowed to mention suppliers, but Thyroid Uk also has a list.
Its hard enough AM45 isnt it, when we dont feel well that its such an uphill struggle to get support and help from our medics......its clear alot feel we self diagnose and that frustrates them, but what are we supposed to do.... there are no shortages of diabetic consultants, but where are the thyroidologists.
Thank you for taking the time to reply, and every best wish, G
You've had a rough ride from your Endo...so sorry some people feel it's OK to down-tread on others. In fact the one who was a "waste of time, waste of an NHS appointment, and a waste of YOUR time", was her.
The reason I went to consult a private endo was the "grief" the GPs give me re suppressed TSH, and "you're overmedicated" despite having low T3. NHS waiting time was too long to carry on carrying that pressure.
The private endo I saw asked me to reduce the 125 levothyroxine to 100, and add the Erfa. I take them both at the same time. The endo was aware my TSH is suppressed and didn't mention it at all.
You are the only one who can say how you feel. It's your body, and no one knows it better than you. If others listen to what you say about how you feel, then they can learn too. Hugs
Thank you for taking the time to reply. You have hit the nail on the head ' listening', it is rare to be heard, if we dont fit the box, the range, its a problem. I think I worry if I continue doing my own thing, that all ok until something else crops up healthwise as I am getting older.I Cant begin to imagine what it would be like being an unconscious in patient with no mention of thyroid meds on my notes because I am doing my own thing.(New Endo has dismissed me back to GP)
But yes you are right, I dont feel right on the regime recommended so I have to continue going by how I feel.
My previous Endo always said he would prefer a detectable TSH, but didnt lose sleep over it being out of range......then he quit and I was unaware of this and assigned madam.
Thank you for your kind and supportive words, I really do appreciate them. Every best wish to you too, G
Doctors tell patients that thyroid hormones must be taken first thing in the morning. But they have no research to indicate that works best for anybody or everybody. I believe that there is research to say that bedtime dosing improves absorption - helvella will know.
But, really, it turns out that finding a dosing schedule that works for you is the best option of all, whether that involves splitting doses or not, and taking it at a time that is convenient for you.
I would say that having a set routine for taking thyroid hormones is definitely recommended. But what that routine is is up to you.
Another factor is that doctors don't care how we feel when prescribing thyroid hormones, and have told many patients that symptoms are irrelevant only blood tests matter. So, if they don't care about us then we have to care about ourselves and what works for us.
Lovely to hear from you again. I wonder sometimes if this is a tick box /time issue with our Drs or is it fear of being sued if something were to go wrong somewhere and if the boxes are all ticked and in range, then that all ok...not my problem so to speak.
Ahh dear, I dont know, what ever happened to the human aspect, the individual...and as you said 'care'. They certainly do get very upset ,fired up, and pretty nasty over thyroid stuff.And heaven forbid if you have an opinion or question.
Thank you for being there, and confirming dose time to suit me. I will keep going, and it will have to be on how I feel ,as I cant exist with 'the range/ tick box ' protocol.
Thank you once again Humanbean I will keep trying, maybe when I get the meds sussed I will grow a thicker skin !! to bounce back the bullies. Hate injustices. You people on here give me such hope, thank you.
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