How to take NDT, advise needed.: After a... - Thyroid UK

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How to take NDT, advise needed.

Windsinger profile image
10 Replies

After a disastrous and expensive visit to private endo I decided to self medicate with NDT. Got TR by T-man brand from Thailand. My blood test results few weeks ago were

TSH 1.54,

freeT4 13.8 ( 12-22),

free T3 3.99 ( 3.1-6.8),

T4 total 68.3 ( 66-181).

TPO ab 9.0 is OK,

ATG ab at 503 ( norm is less then 115).

So far I have not been taking any thyroid medication. Have all usual symptoms of hypo - tired, low body temperature, slow brain, very high cholesterol, unmotivated, depressed etc...

Question is how do I take NDT? Where do I start? How do I decide on the dose? Any advice would be appreciated. Thank you!

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Windsinger
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phoenix23002 profile image
phoenix23002

Your TSH is okay but your T3 and T4 is woefully low. We usually try to get to 1/2 of value for T 4 and the upper range of value for the T 3. The TSH will be lower also.

When beginning NDT dosage start low and slow.... probably 1/2 grain (30 mgs) for about two weeks then up the dosage to 1 grain (60 mgs) for 10 days/2 weeks. Continue raising every 2 weeks or so until you get to 2 grains or so then hold and test. You may have to privately test. If, at any time you feel anxious, can't sleep, are irritable etc, this can mean you are getting too much thyroid hormone and need to back down to a lower dose, one where you felt comfortable with no hypo symptoms.

Most of us end up taking between 2 and 4 grains optimally. I take my NDT sublingually (let it dissolve in my mouth) and split dosage ... 1/2 in am and 1/2 in pm or thirds spread out during the day.

Most importantly, keep a daily journal or a log (nothing fancy or too involved) noting your body temp and heart rate at about 3 pm each day. If you have a blood pressure cuff, record that number also. Note dosage and how you are feeling. Normal body temp and feeling good is your ultimate goal.

This is a link to general information and dosage suggestions. stopthethyroidmadness.com/n...

Windsinger profile image
Windsinger in reply to phoenix23002

Thank you for your thorough reply. I looked up STTM link and one thing I could not find is whether to take it with food or away from food with loads of water, like thyroxin... i took one grain today and my heart rate went up to 75/min... it felt like it was pumping in my throat... I guess I am not used to having such a beat... Will do 1/2 grain tomorrow...

phoenix23002 profile image
phoenix23002 in reply to Windsinger

It usually takes a while for the T 3 to build up in the body but you may be sensitive to it or maybe one of the fillers in TMan. In which case, starting off with the 1/2 grain is probably a good idea.

One other thing (it is always something, huh? lol).. it is a good idea to check your iron, B 12 and D 3 levels. Also, adrenal fatigue can create problems trying to take anything with T 3. Here is a link with some self-tests if you think adrenals are compromised. Often when we are under enormous pressure or stress, adrenals can take a nose dive. well.... can't get 'puter to cooperate with the link.

Just go to the sttm site or google/search ... sttm adrenal fatigue tests .... That should bring up some links.

Normally, thyroid meds are taken one hour away from food and caffeine. Taking the meds sublingually allowed me to take my coffee right away when I got up in the am.

Windsinger profile image
Windsinger in reply to phoenix23002

Thank you again. I did check all the above. My iron is a bit high if anything ( transferrin saturation is 50.27%) , D3 normal/high 96 ( have been taking 10 000IU for a while, but stopped now), B12 is very high ( 929 ( norm is less the 569) from supps I guess) ... Did cortisol saliva test and it looks like a pancake, flat, no rise in the morning, at the lower end of the normal range, one point in the afternoon is out of range, low. Private endo did not think anything was wrong there :( Reading STTM I guess I need to address my adrenals... Considering buying ACE. What do you think?

phoenix23002 profile image
phoenix23002 in reply to Windsinger

Our adrenals run on salt. You might try a 'salt cocktail' a few times per day. Add 1/4 - 1/2 tsp of natural (celtic, pink or Real salt) to a glass of water and drink several times per day. Some folks add lemon juice and a little stevia to the mix and call it lemonade...lol. You can also google 'adrenal cocktail' and find some additional recipes. See if the salt helps the adrenals. Some also add hydrocortisone cream (1 - 2 % to help adrenals. They need to heal. I notice that the UK seems to ignore the whole adrenal question (I think.. maybe I am wrong?).

And somehow, try to relax and NOT stress out. Easier said than done. Also, limit exercise to casual walks etc., nothing too strenuous.

When one's adrenals are struggling, adding T 3 (in NDT or straight T 3) is like putting high octane racing fuel in a clunker automobile. It will struggle to go fast but finally just gives up.

I am woefully inadequate in addressing adrenal problems because I have never had the condition. So please, do research and study. The STTM site is a good one to peruse. I am sure there are others.

silverfox7 profile image
silverfox7

Have you been taking any thyroid medication or have you just been diagnosed. My answer would probably be dependent on what has been happening. I would not start on NDT yet and learn all about it first asits a lot to take in plus there are some testing you need to do before you start NDT because you have to be taking Levo only to do them. Once one any form of T3 then you can no longer tell whether you are converting the T4 to T3 properly. You also need to know that results are read differently and so the numbers are different so you need to tell your doctor or he will wonder why readings are different. You will also need to get T3 tested as it's the only accurate reading on NDT and unless you find someone willing to monitor your bloods you may well have to fund blood tests. I'm not trying to put you off but point out there are some things you may not have thought about. My own personal view is I would encourage anyone wanting to start NDT to start out on Levo first to get to know their body and understand what is happening. I appreciate you may already be on top of this but not quite sure what is happening with you already.

On looking at your bloods then to me you look under medicated and I can't help you on antibodies as I don't get raised one. What did the Endo say that was disastrous?

Windsinger profile image
Windsinger in reply to silverfox7

Thank you, Silverfox. He said nothing was wrong with me, tests FT4 and FT3 and TSH within norm, low cortisol does not matter, then reluctantly prescribed 25mcg levo...I did a long post after that visit... But on reading STTM site I thought NDT seems to be a better and more natural option... So I bought NDT instead... I still have levo prescription. The results in my original post are without any medication...I have read a lot about it all and decided to just do it myself. GP would not bother with me either, I am not ill enough, just tired and depressed for the last 20 years! So I decided I will just pay for private bloods now and again to make sure i am in line... Day 2 on NDT and feeling really strange, very heavy and even more tired... I was hoping to pick up :( My body temperature has gone up from 35.4 to 36.0 C...

silverfox7 profile image
silverfox7 in reply to Windsinger

Thanks for your reply, will read your previous post later. Good your temperature has increased but take things slowly. I followed the STTM way of swapping over but I missed my sweet spot as went from 1.5 to 2 then continued in quartersup to 3 grains then I saw an Endo. I was over medicated and he told me to drop down to 1.75 which I thought was too much but turned out ok. I'm on a little less now as I made sure my Vit D, B12, folate and ferritin are optimal. That made a big difference doing that. I'd started out nearly 40 years ago now in NHS NDT and I was fine for 4 years but then a strike left me stranded so went over to Levo and to be fair was good on that as well. Things altered around menopause so went back to NDT. Hospital don't like it but will do my bloods for me.

Windsinger profile image
Windsinger in reply to silverfox7

Thank you, Sliverfox7. Wow you have a lot of experience in balancing your thyroid!

I have had really bad day today after taking my third dose of NDT, third day in a row. So tired, just wanted to sleep and sick feeling in the pit of my belly... May be NDT is not for me? I would really like to do it without any doctors. Intimidation I had to endure is unbearable! They made me feel like I am a criminal for asking to look into my situation... My TG antibodies read at 503, norm being less then 115. That's what private endo wrote to me in relation to this... "Indeed anti-thyroglobulin antibodies can be found in 10-20% of the normal population in patients who have no evidence at all of any thyroid disease. It is therefore not considered the most useful marker. Your TPO antibody was negative, your T4 and T3 levels were normal and TSH level was normal. The overall conclusion would be that your thyroid function is normal. " end of quote... You can see why I am trying to self medicate...

in reply to silverfox7

Great post!

As a long-term user of NDT (now back on T4 only) I can only agree with what you say. Not many doctors seem familiar with what your lab results will look like once on NDT. Many don't test FT3 levels although they are the most important ones once on NDT. Instead, they tend to freak out about a suppressed TSH (common on NDT) and lowish FT4 levels. They seem completely clueless when it comes to any other form of treatment than levothyroxine, so you have to be prepared to fight the medical community when on anything unconventional.

I'm not saying this to discourage you from trying NDT, only that Silverfox7 is right and that you need to consider some things when taking NDT (preferably before switching to NDT).

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