conversion table from NDT to Levo, trustworthy?

[Koola]

Confused again... just read on STTM page that the conversion table from NDT to Levo is not to be trusted...? Since I was taking 50/63 mg T4 and 6mg T3, I thought that half a grain of NDT would be right -- or is that wrong? Thanx for all advice!

[SeasideSusie Remembering]

Koola

Why do you need the conversion of Levo to NDT when you were taking Levo plus T3 and are changing to NDT?

Depending on which NDT you have, it's likely to contain approx 38mcg T4 and 9mcg T3 per 1 grain. Which brand of NDT have you got?

The balance of T4:T3 in your NDT may or may not be right for you. You need to experiment and see what suits you.

[Koola in reply to SeasideSusie]

Thanks for remembering, Seaside Susie,.

Yes, for 1 month I’ve been taking 50 to 63 mg Levo (experimenting) and had gone down from 12 mg to 6mg T3, every 2 days. Experimented with different times. I had a happy 2 hours a week ago and a week later, one glorious long morning of feeling perfectly fine (which seemed a little strange, lol!) after taking only 39 mg Levo at 4:AM. Only worked once, though. Then back to crashing.

So I thought I would try the NDT that finally arrived. Did so today, 1st time. I’m feeling all manners of hyper (i.e. pretty horrible) and am concluding that I was too hasty. I will stop it and do bloods on Monday, as had been suggested by cooperative endo three weeks ago (to see what addition of T3 would bring).

I ordered Thyroid-S and it contains what you wrote.

By the by, I’m confused about the use of terms mg and mcg! Normally 1 mg = 1000 mcg but that wouldn’t make sense re conversion table which says that 1 grain NDT is 60 mg, contains of 38mcg T4 and 9 mcg T3 = 100 mg Levo ??? what am I missing here? (aside from brain fog?)

Anyway, I know you told me to stick with Levo + T3 for a while and titrate, and maybe I should go on. I’ll see what the labs say soon… If T3 in such small doses of 6mg doesn’t help, will the larger dose in NDT work? But I read somewhere that NDT and Synthroid are 2 different animals altogether…

?

Also, my worry is that Doc said that if adding T3 doesn’t help (my TSH was fine / FT3 & FT4 much too low) I’ll have to go back to 75mg alternating with 88 mg Levo, and I’ve been there, done that!

Hope this didn’t bore the socks off you.

from Confused , Desperate and Fed up -- like most of us.

[SeasideSusie Remembering in reply to Koola]

OK, let's clear up about the mcg and mg first

Levo comes in mcg not mg.

T3 comes in mcg not mg.

NDT comes in "grains" - an old fashioned term. Each grain is 60mg. That means it is a 60mg tablet, and that 60mg tablet contains fillers plus 38mcg T4 and 9mcg T3.

So all thyroid hormone - T4 and T3 and NDT which contains a combination of both T4 and T3, whichever form we are talking about and take, the hormone content is in mcg.

Now, going through your last post:

and had gone down from 12 mg to 6mg T3, every 2 days

Presumably you mean you reduced your T3 down from 12mcg (daily???) to 6mcg every 2 days. You can't take T3 on alternate days. It is a fast acting hormone with a half life of 24 hours, and has to be taken every day.

So I thought I would try the NDT that finally arrived. Did so today, 1st time. I’m feeling all manners of hyper (i.e. pretty horrible) and am concluding that I was too hasty.

Could this be the T3 do you think? Going from 6mcg alternate days to suddenly taking 9mcg?

I will stop it and do bloods on Monday, as had been suggested by cooperative endo three weeks ago (to see what addition of T3 would bring).

I'm not sure that testing on Monday is going to tell you anything with any accuracy. When we change our dose of anything, it takes about 6 weeks to get the full effect of the change. So in the last month you have made all these changes:

* 50 - 63mcg Levo, not taking the same dose continually.

* At one point taking 39mcg Levo.

* Changing dose of T3 from 12mcg to 6mcg and taking it every 2 days.

* Took NDT today.

* Now stopping the NDT and doing bloods on Monday.

There has been no consistency of dose and nothing has been taken for long enough. You will be wasting time and money doing blood tests on Monday.

But I read somewhere that NDT and Synthroid are 2 different animals altogether…

Yes they are. Synthroid is just T4 only. T4 is a storage hormone, some of which the body will convert to T3 which is the active hormone which every cell in our bodies need. Some of us convert T4 to T3 very well, some of us don't convert it well enough so we may need to take T3 either as synthetic T3 or within NDT. NDT is a combination of T4 and T3. So NDT provides some T4 and some T3.

Also, my worry is that Doc said that if adding T3 doesn’t help (my TSH was fine / FT3 & FT4 much too low) I’ll have to go back to 75mg alternating with 88 mg Levo, and I’ve been there, done that!

You need to be on a long enough trial to know if it will help.

So the takeaway from this post is - testing on Monday is pretty pointless. Stay on whatever hormone replacement you choose to take for 6 weeks then retest.

[Koola in reply to SeasideSusie]

Thanks for explanation. Still curious about the 60 mg, though. Could it indicate – this might make you laugh (but laughter never hurts) – the weight of the “grain”?

Back to T3: I checked my daily entries and I told it wrong; except for trying 12mg T3 twice and feeling terrible, I have been taking 6mg for 5 weeks, though I did skip a day once in a while, aside from trying different times of day or night.

I understand that I should stick to the same dosage for a long period and then do labs. However, I have a feeling that T3 doesn’t agree with me (I immediately feel very bad). I’ve had RAI done ten years ago, so no thyroid… (I was okay until about 2 years ago). I wonder how much that plays a role, though I know reactions are very individual.

One more question: I read on this forum that some people take only T3 and that works very well for them. I’m wondering if it’s the T4 + T3 that doesn’t agree with me.

Before signing off, I do want to express my gratitude for all the help you give, as well as other knowledgeable people on here, putting in time & effort although you are “over the hump” as it were. I vow to do the same if ever, no, whenever I am too! Thanks again! Enjoy your Sunday.

[SeasideSusie Remembering in reply to Koola]

Still curious about the 60 mg, though. Could it indicate – this might make you laugh (but laughter never hurts) – the weight of the “grain”?

I don't know, I've never weighed one. But take iron tablets for instance, Ferrous Fumarate comes in 210mg tablets, but the actual amount of elemental iron in each tablet is 65mg. Just don't worry, it doesn't matter, you know exactly how much thyroid hormone is in the tablets.

I have been taking 6mg for 5 weeks

No you haven't, you've been taking 6 mcg as explained above

However, I have a feeling that T3 doesn’t agree with me (I immediately feel very bad)..

One more question: I read on this forum that some people take only T3 and that works very well for them. I’m wondering if it’s the T4 + T3 that doesn’t agree with me.

You just have to experiment. You say you have a feeling T3 doesn't agree with you, in that case taking T3 only probably wont. You wonder if it's the T4+T3 that doesn't agree with you, how were you on T4 only?

It's all a big learning curve and only we, ourselves, know what works for us after trying what's available and see how we do. But it's still important to not change anything for 6 weeks before testing.

[Koola in reply to SeasideSusie]

mcg! Yes Ma'm Thanks again.

[shaws Administrator in reply to Koola]

If you have no thyroid gland whatsoever, I think a combination of T3/T4 might be an improvement for you.

[shaws Administrator in reply to shaws]

The doctor/scientist who wrote the articles in the links below (the most important is 'safely getting well etc' would never prescribe levothyroxine, only NDT or T3 alone for thyroid hormone resistant patients. I think you will find this link helpful.

[diogenes Remembering]

Have a look on Thyroid Canada's website - the article:

L-T3 pharmaceutical equivalency, Part 2: New thyroid science

This goes into great detail about this topic - about T3-T4 conversion calculations

[silverfox7 in reply to diogenes]

Not read the article but I must but in my own clumsy way tried to say taking NDT when I started out was much easier to do and yet we are now trying to ‘change’ the parameters which I feel uneasy about. I started my thyroid journey in the 1980’s on Canadian NDT prescribed by the NHS. I started on one grain after tests showed I was hypothyroid. Things were good but eventually I felt I was ‘going off’ and my doctor gave me another grain and the wellness returned so no testing, calculations etc just how do you feel. Canada has a strike and so I elected to take Levo but now back on NDT. Of course this has me now thinking of other things like why so I have to have repeat tests and probably more important why have I to conform to a given dose and be confined into a ‘range’ and how is that range selected and then I thought about one of your recent posts NDT versus T4+T3 and why I am sure NDT is more stable. Whether I am ready to have another row with my Endo I’m not yet sure! So yes I must read the info you have drawn attention to. I’ve just previously taken on board if NDT has been used for so long successfully then it must be on the right track. I also read some time ago and so wish I had kept the article but a man approached a lunatic asylum and asked permission to take blood test and was granted permission. Out of the 60 or 80 inmates, can’t remember which now, only one was actually a lunatic, the others had various stages of having a thyroid issue. Some could leave and administer there own medication safely but sadly many, by this time, were institutionalised to such a point that they couldn’t be trusted to take the medication but many of those had family they could live with and could make sure they took the medication but sadly some were kept in the asylum as they needed to be watched and treated within the system. I’ve also read that elderly confused when tested are short of T3 but sadly nothing to say that this is addressed.

[shaws Administrator in reply to silverfox7]

This statement you made i.e.

"I’ve also read that elderly confused when tested are short of T3 but sadly nothing to say that this is addressed"

I've always wondered about people who don't have access to the internet are kept unwell due to the guidelines most doctors adhere to.

I doubt when people, who haven't been diagnosed as hypo but are having symptoms would usually be diagnosed as 'depressed' and given antidepressants when they most likely need their FT4 and FT3 to be checked.

Also those who find life difficult may have thoughts of suicide. I know of a young man who took his own life - leaving his distraught parents/relatives/friends stunned -was his T3 depleted?

I think before prescribing anti-d's that a full thyroid blood test should be given to ensure that the FT4 and FT3 aren't low in range.

[silverfox7 in reply to shaws]

Agree, I can’t remember whether it was Dementia or the other one I can’t spell but there are a lot of vulnerable people out there and that alone causes confusion. We get so much thrown at us and it must be difficult to know what’s right or wrong at times. Plus at the end of the day a doctor is a general practitioner and can’t be expected to know it all but yet they have to and I don’t know what the answer is really as there isn’t one that doesn’t involve money somewhere along the line whether it’s for extra training, retraining or getting study time so needing locums. So in some respects I can sympathise but on the other hand they can come out with a ridiculous comment that T3 is t important and I despair! I’ve just been reading something from Canada about testing or rather lack of it. That its full of long words that actually say very little but doesn’t test T4 or T3! I’m glad somewhere else admits it’s wrong to only test TSH, that a full panel is more use to us overall and it actually saves money and dare I say helps make is feel better and have a better life! I would love to see some stats in the NDT period before Big Pharma started being economical with the truth!

[silverfox7 in reply to silverfox7]

Also doctors shouldn’t be paid more for certain services-extras for putting patients on antidepressants. I’d also like to see prescription reviews carried out more as well but there again why should they stop something that pays more. Think the patient is often ignored. Someone feeling they have to take their own life is shocking as well.

[shaws Administrator in reply to silverfox7]

I read the letter the female member from TPA wrote for the Coroner to tell of the reason she committed suicide. Probably hoping it would be published but most likely the statement from the coroner would have been 'whilst mind was disturbed'. It's terrible that someone reached this stage on what should be a common disease.

[shaws Administrator in reply to silverfox7]

Before blood tests were introduced we were all diagnosed upon symptoms alone. Dr Skinner and Dr Peatfield, I think were the last two who were trained upon clinical symptoms and patients were given a trial of NDT.

Mine couldn't even diagnose me whatsoever - and had phoned to tell me the result as by that time I was desperate and told him 'there's something seriously wrong with me and I will have to pay privately for a body scan as there's something not right.

He reassured me an said 'I'll do a Full Blood test" and he did and actually tested 23 things and phoned me up to tell me 'you don't need to worry' your results are back and they're fine". I cried. By chance as I was on my way back from Scotland a few days later (and also discharged from the A&E there as 'nothing wrong). I had phoned to the GP and ask for a blood test for thyroid hormones to be left out for me (suggested by a First Aider who assisted me at the airport). I got a blood test (I hadn't known what GP tested). One hour after test another GP phoned and the first thing she said was 'who gave you a blood test form' and I said "I did" she said you've hypothyroidism come and get a prescription. I cried as this had gone on for about four years at least. I was also diagnosed as having a digestive problem - given prescription which gave me immense stomach pain. Another operated on my throat - "to remove a web" - which wasn't there at all and looking back it was probably a swollen thyroid gland. I could go on like thousands on this forum who must have had similar or as long a journey before being diagnosed.