How to take NDT : So I got some blood work done... - Thyroid UK

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How to take NDT

Mknerr profile image
8 Replies

So I got some blood work done TSH-5.1 (0.35-4.01) and T4-9.0 (4.30-12.50) thats all that my dr. will do for now. I currently take levo 88mcg every morning at 5am. I recently purchased thyroid-s 120tablets and thiroyd 120tabs to find out which one will work for me better, I know that there is a difference on how it works between person to person from reading many post on this site. My question is how much NDT should I take? I would like to do levo and NDT together so I can keep my dr. happy.,he doesn't like NDT. I would like to stay on 88mcg and add NDT to fix my hypo. Should I cut the pill into 4 little piece? and work my way up to a whole one? Or would a whole pill be to much and work up to just a half? Or will a whole one not be enough and I need to work up to 2pills? Or more? And when I introduce the NDT do I take it with my levo at the same time at 5am? Oh and if I take one of the 4 pieces of NDT at 5am should I take another little piece in the afternoon? So many questions I know, I'm sorry for that but I want to make this as smooth and safe as possible, I dont want anxiety or palpitations, just slow and steady. Thank You for your help and guidance.

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Mknerr
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8 Replies
Wishingwell profile image
Wishingwell

If it was me I would stop the Levo as you are on a low dose any way and start with one grain of NDT and monitor pulse and temperature. And see how you feel. Then raise by 1/2 if required ? I'm sure admin will be along to give more guidance. It's important to get your vid b12, folate and ferritin optimal and vitamin d too though. Many people who use Thiroyd or Thyroid s have to have private bloods done via blue horizons or medichecks as they offer a more comprehensive range of bloods than the DRS.( Also it's good to get free t3 and free t4 measured after you have been taking a stable dose of NDT for 6 weeks at the same dose to get a clear picture. )

silverfox7 profile image
silverfox7

You look as thought you need an increase of medication so I would do that first but whatever you take you need to get FT3 tested. That's a must if you start NDT as only the FT3 result is really relevant. On Levo at the correct dose you need FT3 done then if you still don't feel well as it may show you are t converting well. So I would ask your doctors to test Vit D, B12, folate and ferritin as they help with conversion and also your general health and also ask if you can increase your Levo and retest after 6 weeks as even without ranges your TSH is high and your FT4 low. Whoops just spotted the ranges though the T4 one looks a little strange!

Katepots profile image
Katepots

I agree with wishing well re ditching Levo. The Dr does not have to know!

You are undermedicated on your current dose. TSH should be under 2 but ideally under 1 to feel well.

Start on one grain, you may feel worse for a bit whilst body adjusts. I then just upped mine every few weeks by half a tablet until I felt better. So I went from 60mg, 90, 120 and now I alternate between 120&180. I know when my levels are slipping as my eyelashes start to fall out and if slightly over medicated I get a bit breathless. Just really get in tune with your body it's the best way.

I feel sooo much better on Thyroid S, no brain fog, exhaustion, cholesterol now at normal levels, hair stopped falling out, weight better...

Auntyp62 profile image
Auntyp62 in reply to Katepots

Wow ive been toying with changing to ndt and now the few words you have written about disappearing symptoms has made me determined to try.....gp has done all sorts of expensive tests as he is convinced my brain fog,total exhaustion, hair falling out, high cholesterol, lack of eye lashes are not due to t4 as I am right according to blood tests...have had electrical muscle stimulation tests, brain scan, all negative and now being sent to sleep centre.....I will order thyroid S in the hope my quality of life improves

Katepots profile image
Katepots in reply to Auntyp62

Stupid Dr you are completely undermedicated so it could be due to that fact but often it's not due to T4 anyway it's due to the fact that a lot of us don't convert T4 to T3 adequately enough and it's the T3 that we need. T3 is the active hormone, five times more active than T4. All our cells need T3.

Plus with NDT we get T4,3,2,&1 so a no brainer.

I can honestly say for me it has been the best thing I've ever done as now feel human again.

The only slight concern is that it's not regulated but for me it's worth it as before I felt like I was dying.

Good luck!

Ruthi profile image
Ruthi

But you don't as yet have any real justification for taking NDT. Your doctor surely isn't going to leave you with your TSH abov range?

I agree it is likely that you are not converting terribly well from T4 to T3, but the first thing should really be to increase levo, which you can also buy but for a start you can just up your dose using the stock you have.

Why am I advocating waiting on the NDT? Well cost for one thing, although its not a lot, and reliability of supply. I have been self medicating with NDT for many years, and every so often it disappears and its scary! The second reason is that with doctors fixated on TSH your NDT will suppress your TSH and then the doc will be in a panic and reducing your levo anyway. It doesn't matter when all that is wrong with you is your thyroid, but at some point in the future it will cause problems, probably at a time when you are thoroughly unwell and not in a fit state to argue the toss!

So my advice is to start by increasing your levo yourself. Then when you are at a level where you feel better have a private thyroid test which included RT3. If it doesn't work you still have the NDT route to explore.

I had little choice when I started self medicating. I was on 400mcg of levo with no noticeable effect. I had had a trial of T3 which woke me up magically but produced terrible side effects, and private testing was unavailable. NDT was my only hope. Nevertheless I really wish I didn't have to spend my life worrying about supply continuity and arguing the toss with every new doctor I see. I feel really vulnerable.

If you decide to ignore my advice then its perfectly possible to cut the tablets in 4 with a pill splitter. Take it on waking with your levo, it contains T4 and all the same advice about how to take it applies. Very few people need to split their doses and taking tablets away from food and drink during the day is a pain!

jamesal0 profile image
jamesal0

Choose Levo or NDT dont mix.

NDT dosing (This is my opinion and feel free to ignore.)

You start on 30 or 60mg per day for a few weeks.

Increase by 30mg per day every few weeks.

Do this until you get a bad reaction, like pounding heart or feeling hot or tingling feet, lips hands etc.

At this point remove 30mg from your daily dose and run along at this dose for a few weeks.

Try increasing again and you should get the bad reaction but you may not. Either stay or drop back. This process of fine tuning will go for 6-12 months.

Now you have found your base dose. To check, hold you arms straight out in front of you and you'll have a slight tremor. This is normal. Your temp should me 36.5-37Deg C.

Notes

On a cold day (0c) you'll need at least 30mg more on top of your base dose

As the seasons change you will need to fine tune up and down.

Depending on your body mass, you will need about 120mg (2x60mg) to 240mg (4x60mg) per day.

I take 3 x 60mg perday and break it up 7am , 11pm and 10pm.

Your TSH may disappear - good sign you have the tune about right.

GP's have no understanding of NDT and the Lev to NDT tables are junk.

Good Luck

Mknerr profile image
Mknerr

Thank you everyone for the guidance, I really appreciate your thoughts. I have made my mind up and will increase my levo to 100mcg till i get this under control and get the numbers back to normal or at least what I think is normal lol. Then I will start my journey with NDT only, perhaps I will not mix with the levo. I have left over 100mcg levo plus a refill of 90tabs, that should be enough to get me going in the right direction. Then I will come back to this site and ask questions on how too transfer from levo to ndt, because I don't want to get anxiety and palpitations from going to ndt full strength. I'm a stay at home mom with a 3 and 5 year old and I hate being freaked out when they need me, they are a handful and the palpitations just get worst because they are so needy. Again thank you so much for your guidance and I will see you guys later.

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