NP Thyroid/NDT dosage

[Hookie01]

Hi, I'm giving NP Thyroid a go and I recently watched a video of a "Thyroid expert" who said its best to take it twice a day. But I've also seen people say you only need to take it once a day. Just wondering what other peoples experiences are.Thanks

[Insomania]

I’ve trialed both. I did one dose early morning for many months but as the dose increased I felt very jittery, anxious, chest & head pressure. I went back to split dosing and those symptoms eased within 12h. I do 1.25 grains 7am and 0.25 about 4pm.

[pennyannie]

Hello Hookie

For a smooth transition - if now on T4 monotherapy - the Levothyroxine will take around 6-8 weeks to fully leave your body -

so as this treatment option reduces in its power within your body - you slowly build up your dose of NDT - by 1/4 grain doses -

I increased by 1/4 grains weekly - some suggest increasing by a 1/4 grain fortnightly.

No thyroid hormone replacement works well until your core strength vitamins and minerals -those of ferritin, folate, B12 and vitamin D are up and being maintained at optimal levels -

I arranged a blood test prior to switching so to have bench mark readings for my T3 and T4 -

and monitored myself on blood pressure, pulse and body temperature am & pm so I had some physical symptoms to help me understand what was happening to my body during this switch.

I took 1 dose a day and increased over the weeks up to 1 + 3/4 grains when I found I felt a bit anxious, edgey and just not being as comfortable in my skin as the previous week - so dropped back down to 1 + 1/2 grains stayed on this dose 8 weeks and then ran a blood test.

I saw that my blood pressure and pulse remained constant throughout and that my body temperature had increased from 35.4 to 36.6 where it still is today - some 7 years later - and I'm still on the same dose - which I take in the middle of the night - at a toilet break - that tends to dovetail in with the circadian rhythm of the body.

Some people do split their dose - I tried and found my 2nd dose had no effect - even though it was a good couple of hours after I had eaten lunch - you will try for yourself - once you get comfortable using this treatment option.

If you get to 2 grains - hold this dose for 8 weeks and run a blood test to see what is going on -

If your T3 is moving - and you have some relief of symptoms but not quite there yet - restart slowly increasing in 1/ 4 grains - and try and listen to your body -

If your T3 hasn't moved much from your bench mark readings and you feel no better - maybe NDT is not the best treatment option for you at this point in time.

My bench readings were T3 at 25% through the range with a T4 at 100% - TSH 0.01 :

My new readings were a T3 at 110% and a T4 at 25% - TSH 0.01 :

I'm with Graves Disease and post RAI thyroid ablation in 2005 and refused any treatment options on the NHS in 2018 when I was told I was over medicated and needed to reduce my T4 - Levothyroxine - a situation which I had already been through with my doctor -and which had made me more ill than I had ever been in my life - and I started self sourcing my NDT and DI for Myself.

[Hookie01 in reply to pennyannie]

Thanks for your reply. I'm also with graves and post RAI. Can I ask if you had any issues going on NDT that you learnt to over come?. I've tried going up to 1 grain and I get really bad pins and needles at night in my arms and hands to the point that the tops of my arms feel freezing cold inside. I used to get pins and needles at night on levo,but never to that degree.

[pennyannie in reply to Hookie01]

So - it's the same symptoms as you experienced when on T4 only -

Are you ferritin, folate, B12 and vitamin D up and maintained at optimal -

if so - maybe you need a dose increase ?

[Hookie01 in reply to pennyannie]

Folate, B12 and D are ok, ferritin isn't, but im having a hard time increasing it. Ever since having RAI I've suffered with abdominal bloating and pain under my right rib. I believe it's fatty liver from the iodine. If I take iron supplements it aggravates it and I end up giving up. Don't know what to do about it.

[pennyannie in reply to Hookie01]

Well maybe therein lies a problem -

When my ferritin came in at just 22 everywhere I researched said that ferritin needed to be at least over 70 for any thyroid hormone replacement to work well -

I couldn't tolerate the NHS tablets so self sourced an iron bisglycinate product which was much kinder on my stomach and bowel ?

Are there any tests for fatty liver ?

Are you on any other medications ?

[Hookie01 in reply to pennyannie]

No other medications. I've had 3 ultrasound scans since RAI, first showed nothing, that was 6 years ago, second said possible fatty liver, still waiting for results of 3rd as seems to be getting worse even tough my diet is so much better. I've tried all types of iron supplements, most give me stomach problems. The only thing that doesn't is the patches, but I actually don't think they work lol. I have actually just looked at a fb page for "life with graves disease after RAI" and it seems its very common. I'm actually wondering if it's the graves causing it as I do remember struggling with my arms after holding my bay nephew for a while, had to take pain killers to get rid of the pain after i had held him. This was before RAI. Maybe the change in meds have caused a flare up as my eyes did swell when I first started NDT. Seem to have settled now. Oh what fun!

[pennyannie in reply to Hookie01]

Depending on how low your ferritin is - the NHS do offer iron infusions -

There is liquid iron in the form of Spatone sachets but the sachet dose is too low to make much impact - at one point I was topping up with 5 sachets at once x twice a day - ???

[Hookie01 in reply to pennyannie]

Last bloods I had done it was at 20, not low enough for Drs to do anything about it. I've tried spatone, like you say, they don't do much. I will continue my quest to solve these issues and feel well. Trouble is I'm in peri-menopause as well, so I don't know which symptoms are what! It's a never ending mission to feel well!

[pennyannie in reply to Hookie01]

Oh - ok - I don't know what the ' rules ' say - and maybe it's another post code lottery but when you consider that ferritin is such a major co-factor in enabling your other medication to work well - it simply defies logic.

I guess there is the private route until such time as you become more unwell with a lower ferritin of 15/10 ??? and dealing with knock on issues compounding your health further and costing more money to put right !!!!

[Hookie01 in reply to pennyannie]

Yeah, it's 13 I believe before it flags up as an issue! Then you are so poorly, you don't know what to do.

[helvella Administrator in reply to Hookie01]

The latest NICE guidelines say:

Anaemia - iron deficiency

Last revised in August 2024

Anaemia - iron deficiency: Summary

Serum ferritin level is the biochemical test that most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency. However:

Ferritin levels are difficult to interpret if infection or inflammation is present, as levels can be high even in the presence of iron deficiency.

Ferritin levels may be less reliable in pregnancy.

cks.nice.org.uk/topics/anae...

[Hookie01 in reply to helvella]

Thanks Helvella, my last blood test was 8th August 2024, maybe it might be picked up next time!

[RockyPath]

One endocrinologist suggested splitting the dose and another said there was no point in splitting and a third said the T3 in it would be spent after 12 hours.

🤔

Since I struggle to maintain sleep through the night (sequelae of brain injury) I’ve been trying 1/2 grain in am (5 am, or when I’m awake) and 2-1/2 grains at 2:30 pm.

I need some in the am to sustain wakefulness (another TBI problem), but a bunch to stay asleep after 3am.

It took a while to titrate the dose up.

Sometimes it works and I sleep like a quasi baby through the night. Sometimes I’m awake and reading Healthunlocked thyroid posts.

Sometimes I have energy to trot several kilometers around the neighborhood and sometimes I get a hundred meters and want to return home and sleep. The brain’s self cleaning cycle. Never resist sleep when you can help it.

You’ll have to experiment and see what works for you.

[Lynneypin]

I didn’t find any difference splitting my 1.25 dose. I now take it when I wake through the night… usually around 3.

[Panda_26]

Same here, I've tried both but in the end settled for taking it all in the morning as I couldn't notice any difference. Also just more convenient to get it done in one go! I take 2 grains plus a very small dose of liothyronine first thing . We're all very different though , good luck in finding your best way!

[TSH110]

I needed twice a day initially or I felt weird but after a couple of years found once a day was fine. I added 1/4 grain and reduced 25mcg levo gradually allowing the dose to settle until the NDT had replaced the Levo I found 25mcg levo about the same as 1/4 grain NDT only NDT was much better. I was on 125/120 Levo alternating daily and found 1.25 grains suited me well and infinitely better than Levothyroxine at any dose . I take it at night

[serenfach]

I split mine 2 in the morning and one at night. I find I dont get the mid morning lag that way, and some of the dreams are just fantastic!

[jamesal0]

NDT is a Goldylocks hormone. Too much or too little is horrible, just right is amazing.

I started doing 1 grain once a day, after about 5 days I crashed with jitters and heart palps. Had a break for a few days, started again by diluting 1/2 grain in a drink bottle and sipping as the day went on. Then after a few months I could consistently take 1/2 a grain in the morning , I slowly (12 months) increased up too 1 grain in the morning and 1/4 to 1/2 grain in the afternoon. Particularly if I feel like I need a nanna nap at 2-3pm. I take with or without food as my initial experience taking continuously through the day suggested it didn't matter, what matters is you get enough for the particular day. Like if it's cold and windy you need a little more etc.

Blood tests are for doctors and have nothing to do with how much NDT you need on a given day/afternoon.

NDT and Levothyroxine accumulate and if you take too much on consecutive days you will eventually overdose and need to have a day/2 off.

Good luck

[Hookie01 in reply to jamesal0]

Thank you. I seem to be struggling to get to 1 grain, gives me really bad pins and needles at night. Might give the drinking thing a go.

[jamesal0 in reply to Hookie01]

Yes I get tingles in my feet at night when I'm pushing the doseage or I took abit extra at 5pm because I was feeling tired or cold. Will have my feet stuck out from under the covers half the night. Also the tip of my tongue always feels like I've burnt it and the more NDT I take the worse it gets.

[Hookie01 in reply to jamesal0]

Oh, I wonder why it doesn't that. Maybe I won't get past 3/4 like I couldn’t go up to 100 mcg on levo. My body just doesn't seem to like much medication

[jamesal0 in reply to Hookie01]

Just because you may not have a perfect TSH doesnt mean 3/4 NDT or 75mcg Levo isn't the right amount for you. I'm 90kg male and 60mg (1 grain) NDT or 100mcg Levo is all I can take. My TSH is above 4, but I feel fine and don't seem to be getting any long term issues. If I take more NDT or Levo I get a head ache after 2-3 days.

[Hookie01 in reply to jamesal0]

All my levels were off when I was on levo, endo is always nagging me to increase, but like you, would just get headaches. NDT doesn't give me headaches though, just the pins and needles and makes it harder to sleep! Not tested the levels on NDT yet.

[Brightness14]

I have been taking NDT for nearly 9 years now and have no thyroid. I take 1.5 grains AM and another 1 grain one hour after lunch. I have been doing this for years now but it depends on what suits the person. I have no gut problems and this works for me.