1st BLOOD RESULT ON NDT

[NIKEGIRL]

hi, thank you for looking and reading.

I had a full thyroidectomy on 20 December 2022. I tried levothyroxine and was struggling to convert. I went on to NDT 7 weeks ago. I did my blood test this morning fasting and drinking only water at 7.30am, and I withheld the NDT for 24 hours. I appreciate my t3 will come in as a false low because of the 24 hour withhold. This is the first time my tsh has moved in 3 years it has always been suppressed.

My TSH was 0.04 range 0.40-4.0

T4 9.8 range 12-22

T3 2.8 range 2.5-6.0

I took 90mgs of NDT (1.5 grains) for 4 weeks and then took 105mgs (1 and 3/4 grains) for the next 3 weeks and the blood result is as above.

I am taking a loading dose of vitamin d 4,000iu for 6 weeks. I am taking an adrenal support and vitamin C 1,300mgs a day. 120mgs selenium, zinc, iron and 2,000mgs of b12 a day.

I have good energy. I am constipated still (3 years and counting), I have little to no hunger signals and can lose no weight, I like to sleep 10 hours a day.

Is it reasonable to ask the dr for a dose increase of NDT.? I was thinking of asking for 120mgs of NDT? would this be enough? I feel like this a loaded question. I can almost hear your answer from England to New Zealand.

I am not wanting to go back on to levothyroxine at all. Hated the drug. As a human being I am so much happier and more myself than ever before. People have said that the “old me is back”.

Bit lost on what to do with the dr tomorrow apart from ask for more NDT. Thanks

[pennyannie]

Hello :

So, first and foremost you haven't a thyroid now and lost your own natural production of both T3 and T4 and ability the gland gave you of gear changing, adjusting and reading the needs of your body and regulating T3 and T4 in the normal way.

Plus we do not know what level of either T3 or T4 your body requires in order for you to be able to restore your health and well being.

I think we need to look at this result in context with your first set of results when on

T4 monotherapy - before you switched to NDT - and presume your followed the usual routine of last dose of any thyroid hormone 24 hours before the blood draw.

On T4 monotherapy your T3 came in at 2.80 and your T4 was at 16.90 :

On NDT we have the same result for T3 - 2.80 but your T4 is now 9.80 :

But you feel almost back to your old self and likely expected a very different result ?

On paper the results of T3 are identical - but the reality is you feel so much better ?

So how do the medical profession justify prescribing NDT - which is at a much greater cost than T4 - Levothyroxine - when the results are the same - as doctors are number driven and given that very few doctors actually believe or listen to what their patients say?

Ok - so, now you are not T4 heavy and your T3 and T4 in hormonal balance and your metabolism ticking along at around 3.50 - ( divide your T4 by your T3 reading ).

Previously on T4 monotherapy your metabolism was way out at around 6 - ( 16.90 divided by 2.80 ) :

Imagine a see saw - 2 children of equally weight can bounce and respond to each others whims :

2 children of unequal weight likely sees one stuck up in the air and one in the mud :

That's my very basic understanding of how I see T3 and T4 needing to be balanced and able to respond to each other, as and when - whether it be giving someone the bumps - or more likely just getting on with your life as best you can when living without a thyroid and having to self administer your own thyroid hormone replacement daily.

For me I still have residual hypothyroid symptoms and don't seem able to increase my dose - but I can sort out the constipation and low stomach acid issues, and my excess weight started to drop after around 6 months to a year on NDT.

I can run out of steam - but am a vintage 75 year old so maybe I expect too much, but can still mow my lawns and am fully independent and so much better than how i was treated under the NHS system.

[NIKEGIRL in reply to pennyannie]

hi. Thank you. Very good advice from my dearest friend

[pennyannie in reply to NIKEGIRL]

Whilst I 'm glad you have managed to get NDT prescribed for you in New Zealand - the recommendation suggesting slowly building up your dose of NDT has been bypassed as you have had to use a compounding pharmacist and have just 1 capsule of the full dose to take everyday,

If you take tablets there is much more flexibility especially when you come close to finding your optimal dose as most tablets/ grains can to chopped into quarters enabling one to fine tune their dose.

This is when some people then use a compounding pharmacy in the UK to make 1 capsule of however many tablets they find they need - just makes life easier.

What I still find disturbing is the attitude of your doctor in that there is no further increase in NDT and if this hasn't/ didn't work for you - it is back to T4 - Levothyroxine and a referral to a psychologist.

I hope I have misunderstood the above message - as I find this lack of basic biology and thyroid understanding alarming and you must try and focus your doctor on this dramatic improvement in your conversion.

He has these sets of results and may just look at the T3 and think your T3 hasn't changed and that everything is the same - but so much has changed and you have the proof in the conversion ratio -

You must try and get his understanding and I hope he's big enough to acknowledge and gets it - and realises that it is not all in your head - ringing any bells ?

[tattybogle]

ignoring the numbers for a bit ,, just based on how much better you feel, and the fact you've only had 3 weeks on 1 and 3/4 ... i'd be tempted to not increase just yet .

it would be such a shame to rock the boat just because of looking some numbers , and then not feel as good on 2 as you do now .

and 3 weeks is really not long in terms of allowing things to settle in .

if i put you in a time machine and dumped you back to 1950,, so you had no TSH / fT4/ FT3 to look at .. would you think you needed to increase your dose just now ?.. or would you think you were happy to stay as you are for a bit longer ?

[NIKEGIRL in reply to tattybogle]

hi thank you as always. I feel the best I have emotionally and physically since this whole process started. I have days where I struggle to eat and at times can eat no more than 700 calories a day. Based on that I know I am not getting enough nutrition in. I have either No or low hunger signals. The 10kgs I gained through having graves has not left me. When I had graves I ate 3,000-4,000 calories a day hence the weight gain. I could stay on 1 and 3/4 grains longer. I want to go back to the gym and start exercising 5 days a week so I do wonder if I would need the extra 1/4 grain for that? It’s unknown I suppose. Thank you tatty

[tattybogle in reply to NIKEGIRL]

i think it's very likely you could do with a bit more based on those numbers, (and the fact that 1 and 3/4 is relatively small dose compared to what some people need).

ideally you'd have given it at least 6 weeks ,then tested ....to let your deiodinases and your body and your appetite get used to this dose before fiddling with the knobs .

but since the T4 is currently low then there's probably no harm in asking to try 2 .

[NIKEGIRL in reply to tattybogle]

thank you tatty. It’s hard because I do feel very good here. Just a few minor issues really compared to others. I still get the cold feet. My husband calling me “the ice queen”. I want to go back to the gym and exercise as this is a big part of me that has been shelved. Nothing crazy. 45 minutes of lifting weights and I would be like a pig in mud. And my soul would be fulfilled. Love to you always

[Brightness14]

I have no thyroid and was taking NDT for over seven years and feeling well. It did take a little longer for me to feel really well again. I was taking 2.25 grains per day split into two doses.

My FT3 was always over 6 to feel well. You haven't been on NDT for long enough yet and 1.3/4 is a small dose. Do you split your dose and which make are you on.

[NIKEGIRL in reply to Brightness14]

hi. I take 1 and 3/4 grains once a day. I feel ok doing this. I have my NDT compounded personally for me at a laboratory. I pay £70 for 3 months supply.

[Brightness14]

That's good it sound very reasonable.