NDT and Levothyoroxine : Hi all, I hope you are... - Thyroid UK

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NDT and Levothyoroxine

ON72 profile image
ON72
21 Replies

Hi all, I hope you are all well and keeping safe. I am new to this forum so not 100% sure how it works. Just wanted to ask is there anyone out there who takes NDT and levothyroxine? If so how much do you take of each medication and how? I have a mild form of Hashimoto /Hypothyroidism, but don't agree very well with levothyroxine. I was on levothyroxine and NDT in the past but I found NDT expensive so I stopped. I was also on T3 only for a few years but that affected my productive hormones so started to experience different problems. I never menage to pass 50mcg of Levothyoroxine. So I would like to go back to a combination of Levothyoroxine and NDT. At the time I think I was on 25mcg of levo and 1g of NDT as per an Endocrinologist advice. I felt OKish. However, I would like to go back to it now. If there is anyone taking NDT and Levothyoroxine please let me know how much you are taking and how. (is it spread throughout the day and if so what is a dosage etc). I know it will be different for each person but just wanted to get some ideas. Your advice would be greatly appreciated. Thank you in advance. All the best.

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ON72
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21 Replies
ON72 profile image
ON72

Thank you. No worries I understand it. My latest blood test results from a few weeks ago are TSH 5.1, FT3 3.9 FT4 19.1. + positive thyroid antibodies for years. I was still building levothyroxine so I was on about 30mcg when I did that blood test above. I'm building my dosage slowly by 5mcg every 10 days or so as per advice of Endocrinologist. I'm now on 50mcg for about 10 days and waiting for latest blood test results (done on Friday) Now that I reached 50mcg I cannot sleep, have very dry eyes and a headache from it. I also have a bladder nerves and muscles sensitivity (no UTI) now that I reached 50mcg which is very uncomfortable. I read hypothyroidism can affect bladder muscles and nerves too. Otherwise I feel fine. Last year I was off all the thyroid medication for a year and felt kind better than on it to be honest. In a long run I know that's not a solution. Thanks again.

ON72 profile image
ON72 in reply to ON72

P. S. Sorry I forgot to say that my period stopped too as I reached about 30mcg of Levothyoroxine. I'm not menopausal although I'm 48 so probably getting there 😊 Thanks.

pennyannie profile image
pennyannie

Hello ON72 and welcome to the forum :

Which antibodies are you referring to and do you have a diagnosis of a thyroid autoimmune disease and understand these results are from just 50 mcg daily of Levothyroxine.

You are currently very undermedicated with a TSH of over 5 and struggling with symptoms.

An increase in medication is very necessary as you probably know, as when you increase the medication your TSH will go down.

Most people feel well when the TSH is down at around 1 or below and with T3 and T4 balanced and in the upper quadrants of the relevant ranges : your conversion of the T4 into T3 is coming in at around 4.9 ( just divide one into the other ) and most people feel well with a ratio between 1 / 3.5 - 4.50 with most preferring about a 1/4 or lower.

Your conversion can be compromised if ferritin, folate, B12 and vitamin D are not maintained at optimal levels so this might be an area to look at as no thyroid hormone replacement works well if these vitamins and minerals, and your core strength strong.

Personally I think I would switch completely to NDT and use this full spectrum thyroid hormone replacement as your base to work up from. NDT contains all the same known thyroid hormones and with a set value of T3 generally at 9 mcg and T4 generally at 38 mcg.

Some people say 1 grain equates to 75 - 100 mcg daily, but it's different for everybody and since you have taken it before, presume your comfortable on how to dose.

If your endocrinologist is NHS he can prescribe NDT this for you on a " named person only " prescription.

When taking NDT it is more about the relief of symptoms rather than a blood test result : your TSH should be low/suppressed - your T4 low and your T3 high - obviously taking into account the timing of the blood test to your last dose. It is T3 that causes the symptoms of either hypothyroid or hyperthyroid and the only number that you really need to keep an eye on.

I am taking NDT and did try to add a little T4 to my final dose but found it of no assistance and seem to be fine on the fixed ratio of T3 and T4 found in NDT. I've also read of people adding back in a little T3 to fine tune their NDT but this isn't my problem so can't comment.

ON72 profile image
ON72 in reply to pennyannie

Thank you so much for such a comprehensive reply. I have a private Endro and my next appointment is in about week so will see what he says too. Since I tried almost all preparations and I'm sensitive to Levothyoroxine I may go back to NDT and add a tiny bit of T4 or T3 if necessary. Otherwise T4 is suppressed which in my case isn't ideal. Although T3 is an active hormone, I learnt I need T4 to be ideally at optimal level too. Whatever I take I know I have to take it slowly hence taking me a long time to get to right dosage. I take all the vitamins but will get that checked too. Many thanks.

pennyannie profile image
pennyannie in reply to ON72

If you meant TSH ( not T4 ) it will be low/supressed on any form of thyroid hormone replacement that contains T3, whether it be T3 alone or NDT. as it's just the nature of that particular hormone replacement.

The long held thoughts on having a suppressed TSH have been discounted by more current research that has found much of the dogma unfounded and there are also many health risks attached to not being optimally medicated - so personally, if this is your understanding you may like to look into this further.

Yes, to some degree it's a trade off of health now, rather than living with disabling symptoms in the thought that in some years to come you will be better for not medicating optimally in the here and now.

ON72 profile image
ON72 in reply to pennyannie

Thank you. I don't have problem with TSH being suppressed at all. The problem is my T4 for some reason gets a bit low on NDT only and I learnt that all my thyroid hormones ideally need to be at optimal level for me to feel well including T4 even though it isn't an active hormone. That is why adding a bit of T4 to NDT may help. I'm sure my endo will give me an option of adding T3 to levothyroxine I'm currently taking. Or he may opt out for NDT + either a bit of T4 or a bit of T3. I wish I can afford a slow release T3 so I would probably just need to add a tiny bit of that to levothyroxine or NDT. But a slow release is very expensive or at least it is for me. Thanks.

pennyannie profile image
pennyannie in reply to ON72

Oh, sorry then I misunderstood you:

I'm a little confused now as I'm well with a low T4 on NDT as I presume I'm converting T4 well because I have a good level of T3 on a relatively low dose of NDT.

I have read that some people need a higher T4 than NDT gives them, so maybe that's your situation, it's just that if you can't tolerate more than 50 T4 your options are limited.

Does that apply to just the synthetic the T4 or also the T4 in NDT ?

Is your NDT on the NHS ?

I buy my own NDT which I believe to be slow release but other people say it isn't.

I shall send you a PM with some details.

ON72 profile image
ON72 in reply to pennyannie

Many thanks. As far as I know there isn't a slow release NDT. But I could be wrong. If you don't mind sending me some info that would be great. I think there is only a slow release T3 but it isn't available on NHS. You can get it privately. It comes in 5mcg tablet and probably 10cg. I know pharmacy that stock it. The one on NHS is 20mcg. As for NDT I got prescription from my private endrocronolog at the time when I was on it. I think I'm more sensitive to a synthetic version of T4, but as I'm slowly and gradually increasing it, it may work out OK in the end with a bit of a T3 added, or I may just need to switch to NDT and add a bit of T4 or T3. Plus when I did my blood test results mentioned above I wasn't on 50mcg by then yet. I was working towards it. I only reached 50mcg about 7 days ago. I think my TSH, T4 and T3 need to be all optimal for me to feel well. I may have an issue with conversion. However, I did a reverse T3 test and it came back OK indicating I'm converting T4 to T3 OK. This is the test I did before staring any medication. Thank you.

pennyannie profile image
pennyannie in reply to ON72

I am taking Thyroid S and understand the S stands for slow release - though some people it isn't slow release. It has a hard outer coating compared to many NDT and understand it should be taken with a full glass of water on an empty stomach.

I've only ever taken the above NDT and was recommended it :

There is another new one in the market place called Tru Thyroid and read it contains very few fillers and so a good alternative for many people sensitive to the fillers generally used in these tablets and understand some people choose to bite and crunch these rather than take down the usual way for faster and possibly more effective absorption.

ON72 profile image
ON72 in reply to pennyannie

Thank you for all the info and thank you so much for the inbox message. For some reason I couldn't reply, the system didn't allow me. I'll work out why I can't reply to personal messages. Maybe it is some kind of settings that need changing. Thanks.

pennyannie profile image
pennyannie in reply to ON72

So can you type in the box but the reply button doesn't ' ping ' ?

ON72 profile image
ON72 in reply to pennyannie

Yes. Thanks. I think I sorted it out in the end. 😊 Thank you. 🙋‍♀️

ON72 profile image
ON72

Thank you so much. My Endro says conversion may not happen because I'm not on the right dosage. It is just that it is taking me long time to get to the right dosage and I'm clearly not there. However, I didn't feel that bad at all when I was on 25mcg of Levothyoroxine and 1g of NDT (split in 2 dosages) but it was a bit pricey. So I will probably go back to that option but I was going to give a Levothyoroxine a real try first as I never managed to get there. My Endro said once to me it is never great taking only one hormone. He is in favour of taking T4 and a bit of T3. Or NDT only or in a combination with whatever works (either T4 or T3). My Endro is willing to try all the options until we find the right one. It is just that I'm sensitive to hormones and had to do it really slowly and gradually. As for T3 only I felt so sweaty at all the time when I was on it and my productive hormones were badly suppressed so I had nasty menopauseal symptoms even though I wasn't menopauseal if that makes any sense. So I certainly won't go back to T3 only unless I can afford slow release which I'm afraid I cannot. I may add a bit of T3 to Levothyoroxine or take NDT with either T4 or T3. Will get there eventually I hope but it can be a long and painful journey. Thank you so much. Good luck with T3, if you can get slow release one that would be probably better.

DoeStewart profile image
DoeStewart

Hi, I take Levo + NDT. I tried to come off the Levo and take NDT only but had bad palpitations when I tried to raise the dose up to 1 tablet. I take 100mg Levo plus half tablet of NDT, I need my T4 to be high in range or slightly over to feel well and the bit of T3 in the NDT is enough for me .

ON72 profile image
ON72 in reply to DoeStewart

Hiya, thank you. So I'm not the only one whose T4 needs to be optimal. Thank you so much for posting. I appreciate it.

DoeStewart profile image
DoeStewart in reply to ON72

No worries, I just figured it was worth playing around with the NDT to see if it made a difference adding it to my Levo.

ON72 profile image
ON72 in reply to DoeStewart

Hi, DoeStewart sorry I forgot to ask how many times do you take NDT a day and what time? I guess you take the Levothyoroxine together with the NDT first thing in the morning. Do you take the 2nd dose of NDT in the afternoon? Thanks.

DoeStewart profile image
DoeStewart in reply to ON72

Hi there, I only take one dose of NDT with my Levo first thing every morning , I don't need anymore. I seem to sustain my energy levels all day on just what I am taking. I haven't had any private bloods taken since I started NDT as I am going by how I feel. My GP is unaware that I am adding this to my Levo and its not until October that bloods are due at Drs surgery but whether this will be done under the current climate is anyones guess.

ON72 profile image
ON72 in reply to DoeStewart

Okay thanks.

pennyannie profile image
pennyannie in reply to DoeStewart

Hey there

So glad you played around with it and your order isn't not stuck in a draw as I felt responsible !!

DoeStewart profile image
DoeStewart in reply to pennyannie

Hi, oh not at all, you were an invaluable source of advice when I was trying to change from Levo to NDT . I feel so much better since adding it to my Levo 😊

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