I have been following my consultants advice to drop down the NDT to be able to add more T3 (after 5 years trying NDT on various does levels never reaching a sweet spot) However, on this current regime this year i have felt the weakest ever, too weak to stand up for too long , do anything, walk to the end of my road even, too weak to go for vaccine yet, in case it flaws me even more. Same old gut inflammation,nausea etc.
Blood tests after 3 months, on dose 1/4 NDT + 12.5 mcg T3 (in 3 split doses daily)
April 2021/ last ndt 24hrs prio,r last t3 10 hrs prior
The only thing I have changed in 8 weeks is by dropping out tablets of Methyl B Complex in favour of sublingual Hydroxo B12, this has made a significant change to my gut, no way perfect probably due to inadequate absorbtion before. Despite finding several deceased members of family with PA, I was only ever screened for this after 20 years on B12 supplements, so not accurate in hindsight. To contemplate coming off all B,s for 6 months to prove a PA issue,when i have noticable symptoms escalating from withholding for just 2 weeks prior to thyroid tests, would be a no- no..
I dont understand the T3 drop here, all I know is I feel dreadful. Currently not sure whether to put back some NDT to a half grain and drop T3 down to 10 or 12.5mcg, OR give up NDT and go T3 only.
The reason i made such tiny increments at 2.5mcg of T3 dose increase is because it makes me feel so awful if i go higher, in very tissue sensitive or deprived too long!
Splitting the dose to 3 times a day has helped, trying to work out whats effecting what is a nightmare with UK temperature drops and increases, despite doing body temp/ BP/Pulse.
My Endo Consultant says I will probably only get so far on sublingual B12 , then probably need injections, i said " how do i prove i need injections without 6 months off B supps to do PA test?" He said "we will cross that bridge later.........."
I cant see that happening, Endo cant give B12 injections, GP wont without that pos PA test..........oh dear
I had said to Endo " what if the missing link for me was always PA or this 'functional B12 deficiency at a cellular level', as i am D102+, might that explain why i have H ashi's and so much gut pain?" No comment.
Any thoughts greatly appreciated please,
Every best wish G
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Gillybean1
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Your results aren't accurate. Last dose of both NDT and T3 should be 8-12 hours before test. So your FT4 is a false low and your FT3 may be a little low due to the T3 in NDT and it being taken 24 hours before test.
Even allowing for false lows, if your tests had been done with the correct timing, I think they would still be too low.
1/4 of a grain of NDT contains approx 9.5mcg T4 (1 full grain contains approx 38mcg T4 and 9mcg T3) so it's no wonder your FT4 level is so low.
I take combination hormone replacement (Levo plus T3) and I would be bedbound with an FT4 level anywhere near yours, I am unwell if it's in the low part of the range and need it about 60-70% through range.
Have you ever tried Levo plus T3, this gives more leeway of tweaking the individual hormones to find your sweet spot.
I bought some new sandals for the summer about a month ago, can't get my feet in them - wasted a few quid there 🙄. My friend said "Never mind you'll be able to wear them in the winter" 🤣
Thank you for your reply. Well im a muppet then ,because i have always over the last 5 years when only on NDT then, worked my way up to 2 1/2 grains of NDT only (remaining unwell) , and always did an early AM blood test leaving 24 hrs from the last dose, as i thought anything that contained 'T4' whether it had T3 in it or not ,had to be done this way.........so ive done all my bloomin expensive tests wrongly for 5 years and Endo said nought, and every time ive posted here no one has mentioned it........feeling pretty stupid and annoyed with myself now.
And how else would i do it, if i usually take the NDT dose in the morning? Its always going to be 24 hrs............sorry im i being stupid again, muzzy headed....??
The reason for the drop down to 1/4 grain was because i havnt got better on NDT in all the doses tried, particularly gut wise and secondly energy wise , + finding i was DIO2 positive, i was advised to get rid of as much T4 as possible in case it was inhibiting, and to add in some synthetic T3.........then if that didnt work, to go T3 only, BUT to be honest im sure i need more T4 in the mix not less,thhat just my intuition.
How do people on T3 only cope, their T4 levels must be non existant then.........
Thank you for taking the time to answer, on this very hot week, i feel for you all too, our bodies just cant compute these temperature jumps.
Thank you for your reply...........so i should have split mt 1/4 grain into two 1/8 take AM and PM , and split my last PM dose of T3 2.25mcg into two 1.10mcg, and take them 8- 10 hrs at least prior to a blood test ?
Not sure how i would split 2.25mcg which is already split from a 20mcg tab....but i will give it a go...
always did an early AM blood test leaving 24 hrs from the last dose, as i thought anything that contained 'T4' whether it had T3 in it or not ,had to be done this way.........so ive done all my bloomin expensive tests wrongly for 5 years and Endo said nought, and every time ive posted here no one has mentioned it.....It's mentioned on an almost daily basis, sometimes multiple times, how to do tests and the appropriate timing of last doses of thyroid meds. But looking through some of your old posts it was actually mentioned to you:
SlowDragon Administrator in reply to Gillybean1
2 years ago
Definitely agree with greygoose suggestion to only change 5mcg at a time and wait 6 weeks to retest
Last dose of T3 or NDT should be 8-12 hours prior to test
And how else would i do it, if i usually take the NDT dose in the morning? Its always going to be 24 hrs............sorry im i being stupid again, muzzy headed....??
You split your dose the day before. If you usually take your NDT in one dose (and many people divide the dose), then the day before, for the one day onlhy, you split the dose into 2 or 3 and take the last part of the dose 8-12 hours before the test.
The reason for the drop down to 1/4 grain was because i havnt got better on NDT in all the doses tried, particularly gut wise and secondly energy wise , + finding i was DIO2 positive, i was advised to get rid of as much T4 as possible in case it was inhibiting, and to add in some synthetic T3.........then if that didnt work, to go T3 only, BUT to be honest im sure i need more T4 in the mix not less,thhat just my intuition.
Have you ever tried Levo plus T3. NDT doesn't suit everyone, sometimes taking separate Levo and T3 is better because it gives greater flexibility to finely tweak the dose of the individual hormone to suit you and find your sweet spot.
How do people on T3 only cope, their T4 levels must be non existant then.........
Those than need T3 only cope very well or they wouldn't do it. We are all different, our needs are different, and there is no one size fits all. Some find the ratio of T4 to T3 in NDT perfect for them, some find the ratio doesn't suit them and they need to add some extra T3 or some extra T4, some prefer Levo plus T3, some prefer T3 only.
It's just a case of finding what suits us best.
i havnt got better on NDT in all the doses tried, particularly gut wise
You have Hashi's and this often causes gut/absorption problems.
Are you strictly gluten free, this helps some Hashi's patients.
Have you looked into your gut problems? Test for coeliac/ Leaky gut?
SlowDragon has information to help there.
Your ferritin level was quite low in April at 59 (13-150). Ferritin is recommended to be half way through range and some experts say that the optimal level for thyroid function is 90-110.
Thank you for taking the time to reply. Yes i have misunderstood, I thought it was the T3 side of any medication that was the 8-12 hrs away from a blood test, and that 24 hrs for T4 didnt matter so much as it had a longer life in the body.., apologies i misunderstood.
On those years when i was on a much higher dose of NDT i used to split the dose through the day, and did skip the PM dose the night before a blood test, its only this year since i have been on a 1/4 grain NDT in the AM, that it never occured to me or understood that i should split to 1/8 and 1/8 8-12 hrs prior to a blood test.., apologies my mistake.
I have been strictly gluten free and no cheating 10years +. crazily despite this gut consultant and Endo ran Coeliac test, not suprisingly it was invalid, had endoscopic biopsies revealing flat villi, given no reason to date.... also...... DF,SF 6 years, over the years it has become increasingly difficult to digest any grains, and 2years ago had a allergic reaction to rice, swelling,including throat,hives etc......which is why i suspect that B12 deficiency at a 'cellular level' may be the issue. Especially with PA ,Chrons, G Bladder disease in several of my maternal side members of family.
Yes my Ferritin levels are hard to elevate (although higher than they used to be at 23) as its so difficult to digest protein without chronic inflammation,pain,vomiting ,over the last 6 years, I cant tolerate iron supplements,when i did try all different forms/brands i ended up with elevated liver enzymes and that was on a 7mg dose, Endo said stop iron supps and this resolved.
I do take HCL/pepsin and Digestive Enzymes for 6 years now, the only improvement on the gut side, is this recent switch from Methr B,s to sublingual HydroxoB12......but ive reached a plateau. I do follow a FODMAP regime 4 years now.
I have not tried Levo as when i started on this journey 10 + years ago,my symptoms were in my head apparently. !!..the air hunger, the 4.8 TSH , the fatigue, constipation ,35degree temp, etc etc, became housebound,so i did my own investigations, and found i had antibodies so started self medicating with NDT as no help elswhere.....this meant no longer housebound.
It was when i did my own D102 test that i got taken seriously, and Endo said Levo may not be suitable ,carry on withe NDT + T3, but i take your point SeasideSusie, i guess i thought with so many reactions to things, and its taken 2 years to find a form of T3 myselfwith fillers that do agree, im not sure i hqave the energy to ask for different scripts to try different forms of Levo at the moment, im just exhausted mentally and physically.
I was thinking on your words last night and think i might try putting back in another 1/4 NDT bringing daily NDT to 1/2 (i know Endo will say thats a backward move) but i cant function at this level of weakness, then i may have the energy to ask for different prescription Levo.....I think Endo was thinking NDT being more natural may be better outcome/conversion.uptake than synthetic T4...but clearly we are all different.
You are very kind,and thank you for your support, it is much appreciated,
Yes ,been strict no cheating Gluten free for 10+ years, biposied showing flat villi but given no reason, Coeliac screen was done twice despite being GF 2 years at the time, so invalid. SF/DF 6 years, Rice free 2 years due to allergic reaction out of the blue......anything with a stickyness to it ie grains causes a real problem along with pure protein. Which is why i think the 'B12 at a functional level' may be the missing link and may be why i cant quite get the thyroid meds right either. MMA and Homocyst all ok. Mother and grandmother PA posit.
I do take HCL/Pepsin and digestive enzymes 5 years now, Follow FODMAP 4 years eat Pro and Pre biotics.
Very kind of you to answer and i do appreciate that greatly, every best wwish to you .G
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