My experience on NDT so far: Hi there, Brief... - Thyroid UK

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My experience on NDT so far

wysewoman profile image
6 Replies

Hi there,

Brief background - my thyroid has been totally removed following diagnosis of Papillary Thyca 4 years ago.

To appease my inquiring mind as to what i would feel like on NDT instead of Thyroxine, I begun an experiment with NDT.

I purchased 'Thiroyd' and a month ago stopped my 125/150mcg alternating daily dose of Thyroxine and went on one grain with 50mcg of Thyroxine daily. After two weeks I switched to 2 grains and 25 mcg of Thyroxine daily. I have now been on this latter regimen for nearly two weeks.

The main thing I have noticed is that in the last week or so, my hands feel very dry. Would it make sense that this is from my initial, deliberately low dosing for two weeks to see if my body took to NDT? I also had a pretty bad cold - but happy to think that may be totally unrelated.

If I carry on with 2 grains with 25mcg Thyroxine should this resolve itself in the next couple of weeks or should I perhaps start thinking of trying 3 grains a day OR increasing my thyroxine accompaniment to say 50mcg.

My reasoning for still including Thryoxine is that I thought it would be easier than messing about creating half grains as these tablets are small, plus I have a load of Thyroxine anyway!

I have a blood test scheduled for a months time as by then, I anticipate that I will get a fairly true result allowing for thyroxines half life.

Any thoughts from those in the know, much appreciated.

Thanks

Melissa

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wysewoman
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shaws profile image
shawsAdministrator

Results are only a guide. It is how we 'feel' on particular doses that is the aim.

Usually, when switching from levo to NDT we just start on a dose equivalent to around what we took of levo i.e. 1 gr is stated to be around 100mcg of levo. Keeping an eye on one's pulse/temp when adjusting doses can be helpful. Then every two weeks increase dose by 1/4 tablet until symptom-free.

Always taking note of symptoms which are relieved. That is the aim of taking replacement hormones.

thyroiduk.org.uk/tuk/about_...

I think it is a bit confusing to mix/match NDT and levo and at present your dose of 2 grains and 25 mcg of Thyroxine daily is approx 225mcg of thyroid hormones.

getrealthyroid.com/conversi...

wysewoman profile image
wysewoman in reply to shaws

Thanks for that. After increasing NDT, how long after do you think I should be looking to see if a symptom has resolved itself?

As a newcomer to NDT, I notice that there are a couple of different trains of thought on the thyroxine and its NDT equivalent with several suggesting that in reality, its more like 75mcg and not 100mcg so i'm trying to keep an open mind and see what happens - this is for me, a personal experiment. It wasn't that I particularly felt bad on Thryoxine but I always felt I wasnt *quite right* - something to do with my thinking and a mild anxious edge to me.

I wasnt originally going to keep taking any thyroxine - and for a few days, was just on 2 grains from my initial 1 grain and 50 mcg, but when I started noticing my hands I decided to add a 25mcg.

Would I be right in thinking that dry feeling hands is a sign that I am undermedicated and not overmedicated?

I also take it soon after my morning coffee and always have done with my Thyroid meds. I know that coffee affects absorption of Thyroxine - i assume that NDT is similarly affected? I've always worked from the basis that as long as I'm consistent then it will all iron itself out in my blood results and dosage over time (which has been several years now with Thyroxine anyway)

Cheers,

Melissa

shaws profile image
shawsAdministrator in reply to wysewoman

Melissa I am not medically qualified and the above 'equivalence' is from those who actually manufacture NDT i.e. Naturethroid and WP thyroid so they have to state more or less correctly. However someone could take 1 grain and have a different effect than another person on 1 grain so it's not the 'amount' but the relief of symptoms which is the priority. This is a list of symptoms and you will see dry skin is one symptom:

thyroiduk.org.uk/tuk/about_...

We nearly all take different amounts to relieve our symptoms and that's the point 'to relieve them' but not to overmedicate and give ourselves 'hyper' effects.

Kell-E profile image
Kell-E in reply to wysewoman

I have had a TT as well. I was on approx 150mcg levo and switched over to NDT. I take everything with coffee also. I assume this affects absorption, but I am consistent so perhaps it just results in needing more which is fine by me. I am not waiting for coffee, lol.

2 grains for several months gave me under range fT4 and bottom of the range fT3. I actually felt better though. I would ditch the levo completely, it could be complicating the picture. I would add more NDT as needed.

When you add T3 in any form (ie. NDT) your TSH likely drops. This worsens conversion percentages favoring rT3 and reducing the percentage of T3 converted from T4. That's why I wouldn't add the levo...just more raw material for rT3. NDT at least has a corresponding amount of T3 for every mcg of T4. That's why it works better for many.

wysewoman profile image
wysewoman in reply to Kell-E

Thanks for your personal insight on this!

I've just seen my consultant and confessed my self-experiment to her. She had wanted to do a thyroglobulin test but I pointed out that the ndt is likely to skew the result. I offered to ether go back on 6 weeks of levo prior to my next appointment or procede on the basis that I'm fine and establish my new base level on ndt (assuming I stay on it)

I've got my TFT tests booked at my doctors in 5 weeks and I've decided to go up to 2.5 grains from today and drop all levo.

Is it ok for me to take all 2.5 grains in one go or would you split it? I currently take 2 together in the morning and seem fine on that.

Cheers

Melissa

Kell-E profile image
Kell-E in reply to wysewoman

Because of the T3 content some people find it beneficial to split the dose of NDT. But others take it all at once. It boils down to what works best for you.

As for going back on Levo for the test, it might be easier on your body if you got hold of some T3 and simulated the same T4/T3 content of NDT with synthetics.

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