Just Started on NDT: It's been a few months since... - Thyroid UK

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Just Started on NDT

Devonlad profile image
10 Replies

It's been a few months since I last posted and at last I've summoned up the courage to try Thyroid S.

Up to December I was on 112.5mcg Levo only - taken in the middle of the night at loo visit.

On 6th December I decided to begin the change to NDT so dropped my Levo to 87.5mcg and started on 1/4 grain NDT. Felt good, energy levels good so 1 week later (13th Dec) dropped to 75mcg Levo and increased to1/2 grain - still feeling good. On 19th Dec dropped Levo to 62.5mcg but stayed on 1/2 grain. Still feeling good.

Over the next week went down to 50mcg Levo and up to 3/4 grain NDT and then 25mcg Levo and 1 grain NDT. A week later (late Dec) I dropped Levo entirely, but stayed on 1 grain.

In early January (6th) I moved the time of taking NDT from middle of night to 0600 am and tried 1 1/2 grains split dose 1 grain 0600 am and 1/2 grain middayish.

Since then not been feeling great - low energy/ various muscle aches in the chest area. So I've just reverted back to 1 grain early morning, but in a few days considering adding 1/4 grain at lunchtime.

Am I being too hasty in all this and do I need to give my body a chance to get used to NDT ?

I know it has been only 5 weeks since I started this transfer so maybe expecting too much. Unfortunately I am sensitive to changes of medications etc so need to be careful what I do.

Any suggestions as to the best way to proceed would be appreciated. I do realise that1 grain probably won't be enough for me to end up on. (I'm male, weigh 74KG and have no thyroid)). I am due a blood test at the end of the month. Many thanks

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Devonlad
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10 Replies
joey82 profile image
joey82

Hi Devonlad,

I had a quick read of your post and I would have taken a longer time frame to make the changes you did. Perhaps waited around 6 weeks after the 1st change were you introducing NDT?

You don't want to make the changes to quick and miss the sweet spot. The combination of NDT & LEVO may have been your sweet spot.

I've made this mistake myself and regretted it.

Sounds like the introduction of NDT was a positive move through.

Devonlad profile image
Devonlad in reply tojoey82

Thanks joey82, Yes I know I'm a bit impatient, but when feeling good it's just so easy to tweak a bit to get that bit better. It's been my downfall before.

joey82 profile image
joey82 in reply toDevonlad

Yes, been there, done that and got the t-shirt. Unfortunately adding Levo back in will take 6 weeks to settle.

I hope you can get back to your good place soon. I have never used NDT so i'm not well placed to advise on what's best to do.

From my limited experience it does seem that NDT & Levo is an unlikely combo. I've not heard of many people on that combo.

pennyannie profile image
pennyannie

Hey there again :

Did you take bench mark readings of your T3 and T4 before you started this experiment and are your core strength vitamins and minerals - ferritin, folate, B12 and vitamin D - up and are maintained at optimal levels ?

The T4 - Levothyroxine will take around 8 weeks to fully leave your body and as this treatment option reduces in your body - and for a smooth transition - you slowly build up the NDT in 1/4 grains - I went up weekly - others suggest fortnightly.

I stopped 125mcg T4 one day and started NDT the following day.

I monitored myself daily on blood pressure, pulse and body temperature am & pm - and whilst these first 2 didn't move much - my temperature slowly rose from 35.4 to 26.6 where it is today some 7 years later.

If you get to 2 grains NDT stay on that dose for 8 weeks and then run a blood test to see what is happening to your bloods -

If your T3 hasn't moved much and you are still with most of your symptoms maybe NDT is not the best option for you at this point in time.

If your T3 moving and you feel better but not quite ' there ' yet - start building again from 2 grains :

I only managed to get to 1 + 3/4 grains and started feeling not as good as the week before and just uncomfortable in my skin - I dropped down to the previous weeks dose stayed on 1 + 1/2 grains daily and took a blood test 8 weeks later - as you need to wait to let the NHS bed in :

My T3 came in at 110% with my T4 at 25% through the ranges - and the exact opposite of where my levels were when on T4 monotherapy and I felt very well -

I'm still on the same dose - and now just run a yearly full thyroid panel + the vitamins and minerals as I still need to supplement these core strength vitamins and minerals - and arrange a fasting blood test some 10-12 hours after my only dose of NDT which I take in the middle of the night to dovetail in with the circadian rhythm of the body - ( and a visit to the bathroom ) :

Over 7 years we have seen some issues with some NDT brands - but I know where I feel best and generally achieve a T3 at around 90/110% with my T4 tracking at around 25/30% through the ranges.

I'm with Graves Disease and post RAI thyroid ablation in 2005 and became much more ill than I had ever been some 8 years post drinking this toxic substance - details on Profile if interested.

Devonlad profile image
Devonlad in reply topennyannie

Hi pennyannie,

Many thanks for your input, most helpful and food for thought

I had a blood test at the end of October, a month before I started this changeover, my T4 was at 92% through range and T3 was 50% through range. I take all the supplements D, K2, B complex, selenium, zinc and are at optimal levels. I followed the recommended protocols on timings/biotin, fasting etc.

I think I went too fast going from 1 to 1 1/2, so have reverted to just 1 grain for maybe a week and then add in 1/4 grain.

I'm interested in your taking NDT in the middle of the night due to circadian rhythms, I had assumed the thyroid (when I had one) was kind of secreting' its hormones into the bloodstream throughout the day.

As you saw in my post I was taking the Levo in the middle of the night, and initially took the NDT then as well and had no issues (a bit of occasional overheating maybe) but just changed the NDT to about 6 am as I thought that would be better for the T3 which has a much shorter active life. Maybe I should go back to taking it then.

I haven't tried the temperature taking, I've got a digital thermometer so will give that a try though it's probably a bit late now I'm on NDT. My pulse and blood pressure are stable.

pennyannie profile image
pennyannie in reply toDevonlad

Tracking your temperature is purely to help you understand what is happening in your body and a physical, factual report of your progress in finding your best dose of thyroid hormone replacement and restoring your temperature to as near as ' normal ' for you.

If you had a thyroid gland it would be balancing and regulating your thyroid hormone production throughout the day - but without this major gland your body physiology is somewhat changed -

but whether with a thyroid or not - thyroid hormones are needed by every cell and organ in your body and regulate the rate at which your body uses calories, metabolises, makes energy and gives you back ' your you ' .

SlowDragon profile image
SlowDragonAdministrator

Quite a few members take levothyroxine and NDT

On NDT it’s common to have low Ft4

Adding Levo can help improve this

Brightness14 profile image
Brightness14

After I had my thyroid was removed back in 2015 I was put onto Levo for the first time. After 6 months I went onto Thyroid s NDT. I was told to stop Levo and the next day start 1/4 NDT I then increased by 1/4 every 10 days. You have started in a very different way. Levo does stay in the body for weeks.

I took 2.5 grains to start for years. 1.5 at 6am and the other 1 one hour after lunch. Then after a blood test and a new batch I only needed 2.25 for years split.

The batches do vary in potency, which batch are you on. I have no thyroid weigh 63 kilos 5ft 8inchs tall lady. I also have no allergies or any gut problems.

At the moment I am on batch 23T01004 and think that I need to reduce to 2 grains only per day. I hope that you get sorted out soon.

Devonlad profile image
Devonlad in reply toBrightness14

Thanks for your info, interesting points you raise. I did consider your route, but as I am very sensitive to changes in meds I decided on a gentle ease in. I suppose the downside of my route is there will be residues of Levo in the body for longer. I am doing all this without any support from Drs.

I initially bought a small amount (100 tabs) of Thyroid S and cannot read the batch number of the label as it's all smudged. I have now ordered the 'normal' amount of 500 tablets which should be here in the next week or so.

Brightness14 profile image
Brightness14

It's hard doing everything without help. I never had help either from my GP but I did have help on the site that's what I followed.

My FT3 has always got to be about 6 plus and my FT4 about 19 to feel well.

Good Luck from Dorset lady living in France.

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