Results after switching to NDT: Hoping for some... - Thyroid UK

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Results after switching to NDT

HarrietJW profile image
16 Replies

Hoping for some thoughts on my recent results? I have been slowly raising NDT and feeling much better but I still have some classic symptoms (cold hands & feet and difficulty losing weight).

Could I be overmedicated based on these results?

TSH

0.04

mU/L

0.27 - 4.2

T3

7.59

pmol/L

3.1 - 6.8

T4

14.9 pmol/L

12 - 22

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HarrietJW profile image
HarrietJW
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

When were vitamin D, folate, ferritin and B12 last tested

Was test done as early as possible in morning before eating or drinking anything other than water

Day before test did you split NDT into 3 smaller doses, taking last 1/3rd daily dose NDT 8-12 hours before test

HarrietJW profile image
HarrietJW in reply toSlowDragon

Hello, thanks, it has been a few months since Vit are tested, what would that signify?

SlowDragon profile image
SlowDragonAdministrator in reply toHarrietJW

What vitamin supplements are you currently taking

Extremely common to need to supplement continuously to maintain optimal vitamin levels

pennyannie profile image
pennyannie

Hello Harriet :

With NDT you dose to the relief of symptoms and not a blood test result.

The blood test and ranges were all introduced to used with Big Pharma's T3 and T4 :

Your results look similar to mine after around 10 hours from taking my full dose,

I found subtle improvements in my health for several months after I'd settled on my dose and my weight slowly decreased over around a 2 year period and I've dropped around 2 dress sizes.

If still with those blocks of ice instead of feet, I'd think you need to continue a little with 1/4 grain increments and see how you go - week on week :

Mind you I'm 2 pairs of socks on indoors, this time of year :

Are you taking your temperature, blood pressure and pulse - how are they looking ?

HarrietJW profile image
HarrietJW in reply topennyannie

Hello, thank you for this. I think I have been scared to raise and send my T3 high and my TSH too low. would you ignore your bloods and raise to feel better? I am already on 3 grains which feels like a lot. Temp is getting better and closer to 36 on waking, pulse is constantly around 60.

pennyannie profile image
pennyannie in reply toHarrietJW

Well I don't have a doctor standing over me as I'm self medicating and doing it for myself.

You need what you need - and if you've no negative symptoms I'd keep going a little more.

I think your pulse and temperature both a little low.

There's little point in keeping yourself under medicated - that's for doctors to do :

Why settle for less than as best as you know you can be ?

The TSH was originally introduced as a diagnostic tool to help test for cases of hypothyroidism and was never intended to used once the patient was on any form of thyroid hormone replacement.

HarrietJW profile image
HarrietJW

Hello, thanks for your message. luckily I have not had cancer so I think a different Harriet :)

manizani profile image
manizani

do they do reverse t3 test in your area? That would be helpful to see.

HarrietJW profile image
HarrietJW in reply tomanizani

Thanks. when I had my RT3 tested it was 19 (10-24) people on here were quite dismissive of that but I would love to hear what you think?

radd profile image
radd in reply toHarrietJW

HarrietJW,

RT3 looks slightly elevated. Tania Smith explains the deiodinase enzyme (D3) that converts T4 to RT3 also converts our precious T3 to an inactive form of T2 (3,3′-T2), and can not differentiate or choose between which it converts, ie when one happens, the other happens as a natural consequence. This is what I referred to below when I said about having hypothyroidism on a cellular level.

.

thyroidpatients.ca/2019/11/...

Knowing when RT3 is elevated is useful because although doesn’t tell us the reason, it allows us to know there is a problem and that hypo symptoms may not be attributed to insufficient thyroid meds but possibly a totally separate issue such as low iron, high cortisol, inflammation, etc.

radd profile image
radd

HarrietJW,

3 grains is quite a lot. Are you taking an NDT med such as Armour, or a glandular NDT supplement such as Metavive?

I would be hesitant to raise meds further with an over-range FT3 level which holds its own inherent risks, and it might be meds aren’t working effectively due to iron/nutrient deficiencies, hence SlowDragons reply enquiring after levels.

Or you’ve risen slightly too high and missed your sweet-spot. Elevated levels don’t always cause ‘hyper racy’ symptoms if meds start working against us on a cellular level which would incur hypo symptoms such as 'cold hands & feet and difficulty losing weight'.

On 3 grains and hypo symptoms I would be looking firstly at iron levels, secondly cortisol levels and then oestrogen, because if the problem lies with one/all of these then raising thyroid hormones further will not fix it.

in reply toradd

I know it´s generally said that the average daily dose of NDT is 3-3.5 grains of NDT (Paul Robinson states this in "The Thyroid patient´s manual"). However , some need much more. I felt more dead than alive on 3 grains daily but am slowly beginning to feel normal on 5 grains daily. I am not worried about it at all, just happy to have found what suits me (I think I may end up on more in the end). A US phychiatrist, Dr. Dommissee, who prescribed NDT, stated that overweight, thyroid-hormone resistant patients may end up needing 6-9 grains of Armour daily. So, we need what we need. When I was on levo only, I was often told nobody "should" need more than 150 mcg daily, but that made me feel lethargic and I had no quality of life whatsoever. If I am thyroid-hormone resistant and need a higher dose of NDT because of that, so be it. One interesting thing I note and that I have not found explained anywhere is the following: Paul R. says in the book mentioned above that most people on T3 only need 40-80 mcg daily, whereas patients on NDT most often need 3-3.5 grains (so, 27-31 mcg of T3 daily). So, apparently, if on a T3+T4 combo you supposedly need less T3. But some people, me included, seem to need more than 40 mcg of T3 daily along with rather high doses of T4. Apart from Dr Dommissee´s, article, I have not found any other sources describing that scenario. I have, however, found stories by thyroid patients who only got their lives back on high doses of T3+T4.

radd profile image
radd in reply to

PurpleCat71,

That’s because when T3 is medicated with T4 it up-regulates action by the conversion deiodinases' resulting in a larger T3 total than the amount medicated. This is why NDT manufacturers claim 1 grain (60mcg) to be the bio-equivalent to 100mcgT4. Therefore, 3 grains of NDT = 300mcg, working out at 114mcgT4 + 62mcgT3.

Of course with the genetic impairments & illness/health conditions/nutrient & iron deficiencies we bring to the forum, this chances basic fundamentals for best thyroid hormone function falling short, and the consequence is our meds don’t work as they should. Many might say a better representation of 1 grain NDT is perhaps approx 75mcgT4.

Thyroid hormones are controlled by TSH but also activated/inactivated at the cell by enzymes (deiodinases) which are influenced by many outside factors such as stress, inflammation, depression, dieting, etc as well as thyroid hormone and themselves.

For instance in the presence of inflammation D1 becomes down-regulated (less T4-T3 conversion) whilst D3 becomes unregulated (more RT3, and T3 converted to inactive T2). Hence the variation in their behaviours and our responses to thyroid hormone replacement meds.

Thyroid hormone levels in the pituitary determine the TSH level but many of us need a low TSH to be able to gain enough thyroid hormone for well-being. However, this means T4 to T3 conversion will be limited by deiodinaise enzyme D2 at a cellular level so we need to medicate the T3 amount that exceeds the loss.

For many this may only be a tiny bit. I started on 20mcgT3 with Levo 5 years ago and now only need the 9mcgT3 in one grain (which actually equates to a bit more + a bit more because I medicate it with extra T4). This reduction I attribute to sorting gut issues, deficiencies, sex hormones, etc, which in turn improves conversion, transportation, uptake, etc.

I believe being very ill with thyroid issues can changes us, changes our whole physiology so we may never work the same as before and hence sometimes people such as yourself need to look beyond the standardisations. Thank goodness for our forum where we can all discuss and you have found meds that are working for you 😊 . Interestingly a raise of just 1 grain NDT took O/P’s TSH from over 10 to 0.04 mIU/L.

in reply toradd

So true, this forum is so much less dogmatic than many other forums where people are told they "shouldn´t" take this or that just because someone else did not improve on that exact drug or combination of drugs. I like the fact that this forum is very open-minded and that it´s often stressed that there is no "one size fits all". I think that many doctors prescribing NDT and/or T3 are also too dogmatic and narrow-minded and claim to know what every single patient needs. The same applies to some books by thyroid patients, such as the STTM by J. Bowthorpe and also "Tired thyroid"...the first book claims that NDT is the best drug for everyone, the second one that levo + tiny doses of NDT/T3 work for everyone...when, in fact, the autors are only describing what worked for THEM. ...at a given point in time.

HarrietJW profile image
HarrietJW

Thanks this is very helpful ! I am taking thyroid-s from thailand currently

Thyroidturtle profile image
Thyroidturtle

Don’t see a reverse T3. Also check selenium and iodine for the coldness.

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