Endo wants to trial T3 but reduce my NDT to 1 grain ?

[Gillybean1]

Still feeling lousy,weak,gut problems etc.

Having tested positive to DIO2 one parent, and to hypochlorhydria, my Endo wants to trial adding T3 20mcg per day, either split dose 10mcg AM and 10mcg pm but wants me to reduce my NDT from 1 1/2 grains per day (1 1/4 AM and 1/4 PM ) down to 1 grain. Why is this ? Can i not just add a little T3 to my usual dose taken of NDT ? Or is that too unreliable and more difficult to monitor ? He has commented that my TSH is too low and despite the NDT should register optimally. I am a little confused, i thought the TSH number was irrelevant once medication starts, or have i got that wrong ?

My most recent blood test in late Nov were;

TSH 0.038 (0.27 - 4.20 )

FT4 15.300 (12.00 - 22.00)

FT3 5.65 (3.10 - 6.80 )

TG 16.600 (0.00-115.00)

TPO 70.3 (0.00-34.00)

B12 Active 234.00 (37.50-188.00)

Iron 25.34 (5.80-34.50)

TIBC 66.14 (45.00-72.00)

TRANS % 38.31 (20.00-50.00)

Ferritin 84 (13.00-150.00)

CRP 1.33 (0.00-5.00)

These are based on taking NDT 1 1/2 grains, last dose taken 24 hrs prior, taking iron supplements and clearly too many B supplements.

This time last year i was taking 2 1/2 - 2 3/4 grains on alternate days my FT4 was 22 and FT3 6.2 i felt better than i do now but experienced my first thyroid storm last March when i halted a daily supplement drink and a coconut milk that i didnt realise had Calcium in , boom 4 days in thyroid storm which Endo put down to Calcium inhibiting thyroid meds. So i started back again working my way up, not sure how i missed my sweet spot, as i was checking pulse and temp every day, then i tested positive to DIO2 also last March and believe it or not the trial of T3 suggested has still not begun due to question of who pays for me ,hospital or GP.

I also seem to be needing less meds to last year since i added Betaine to the mix, but still feel lousy and very limited in what i can do day to day. There is alot riding on me trying T3......is this the missing link.... DIO2 positive is this why i was the athletic child in short spurts, wiped out the next day ?.......is this why i havnt fully recovered with the NDT ? .......

Like many here, i do find it all a juggle, we are 'the jugglers' , im currently going through additional home stresses, and it changes everything, sleep -= how meds are absorbed - = rubbish digestion = more of a stressor.........bla bla bla, you all know what i mean............oh yes and the Endo appoint this week is now an angst, i used to take this kind of thing in my stride, hey ho.

Any comments on reducing NDT to trial T3 very much appreciated please.

Every best wish to all, G

[fibrolinda]

The 20 t3 is equivalent, approx, to 1 grain NDT I believe so it would actually be an increase in dose still if you reduce NDT by 1/2 grain. Personally I think it worth a try, it may turn out to be the missing link. Ref TSH, usually is suppressed when taking any form of t3 but it seems your endo doesn't know this, especially saying he wants TSH to increase then giving you t3😶

You did stop b supplement 5 days before tests didn't you?

How's your folate and vit d levels?

[Gillybean1 in reply to fibrolinda]

Thank you fibrolinda for your reply. Tomorrows the big day re 'who prescribes for me' ive got my knickers in such a twist today over meeting Endo tomorrow i feel worse than usual,very anxious, adrenals suffering big time....odd when im so rational, but its the culmination of a 9 year struggle to get to this i suppose.

I will ask him about the TSH again, but last time he said he expects to see a little more than test states, you know what its like when you go into these appts, i go with my list, hands start shaking, i feel so intimidated and why ? its my health im fighting for.

No i didnt stop the B's before, they were in a necessary supplement drink (very underweight) so i only stopped for 24hrs, my Folates and D are good, upper end of range.

The agreeing to the adding of T3 to NDT only came about because i showed the DIO2 positive test, something he had said 4 years earlier i didnt need.

I really appreciate you responding, any support is fantastic, and less lonely,

Every best wish to you, G.

[fibrolinda in reply to Gillybean1]

((hugs)) wish there was more I could do.

If there was biotin in your drink only 24 hours without may have falsely lowered TSH and falsely increased ft3and 4... As long as you and your Endo are aware of this if the lab used did use biotin in tests.

Is there someone going to appointment with you?

I've got now where I send letter to Doc before any appointment to make sure I do get all my points etc across as I just blank, brain shuts down with slightest stress. No help to you sorry.

Good luck

Linda

X

[Gillybean1 in reply to fibrolinda]

Hi Fibrolinda,

Oh you are kind thank you.

I didnt know that about Biotin, and yes the doses annoyingly are very high in those drinks, so thank you for that , Endo was aware previously of B supps taken but has never mentioned it. I wonder if thats why i have been feeling worse since i stopped them completely 2 weeks ago, leaving a truer picture of my T4/ T3 levels, well the bloods taken yesterday will no doubt show subtle changes, but that as we know is big where T3 is concerned.

Re yesterday, yes ,this time i asked my partner to actually come into the appointment with me, wow what a difference, Endo who is always very pleasant/direct, was much more open this time,much more forthcoming with up to date info on finances concerning T3 prescriptions etc........but no joy for me, although agreed i need it, currently like many others i will have to fund myself and try to get the German version at miniscule cost compared to UK.

So now i have to drop the NDT dose to 1 grain over a couple of weeks i suppose, i dont relish that, feeling dreadful today anyway, then add the T3 in tiny amounts and increase slowly........fingers crossed its the missing link.

I did go with the list, i saw him clock it on my lap, and i still forgot to ask a few things as i was so sleep deprived, so i will send a letter.

And by the way ,you have helped, you helped me enormously with your words the night before my appointment, so thank you again.

Im hoping you are ok?, im guessing youve seen Dr Lowe's body of work?

Every best wish to you, take care, Gillybean1