hi all,
hoping for some insight. I have increased from 1.5 to 2 grains. I’ve noticed no changes aside from improved mood and a strange tightness in my hands and feet, it’s like swelling. My initial thoughts were high blood pressure but my blood pressure is measuring normal.
Latest thyroid bloods on 1.5:
T4: 10.8 (12-22)
T3: 4.6 (3.1-6.8)
TSH: 4.5
be really grateful if anyone could shine a light on this or relate x
Strangely enough I have this in my feet and lower legs at the moment. I've fairly recently been adding in T3.
You have dysautonomia like me, I wonder if you are also a bendy/hypermobile person?
I was thinking the weird feeling is caused by thickening of the soft tissues which happens when you're hypo. My feet have been very floppy and recently had to get some new orthotics made to give them better support. Anyway I'm taking this as a sign of healing and my nerves actually working so I can feel things are wrong.
Hey there :
Well you still appear to be undermedicated going by this above blood test.
I'm glad you are sensing some relief as you try this treatment option.
I went up in 1/4 grain weekly increments and monitored my blood pressure, pulse and temperature twice daily and found no changes apart from my temperature slowly rising from 35.4 to 36.6 where it seems to hover some 6 years on.
There came a week where I felt uncomfortable in my skin and a little edgey and nervous - I dropped back down to the previous weeks dose - stayed on that lower dose for 8 weeks - letting it bed in - and then ran a blood test.
After an 11 hour gap from my on dose a day - my T3 was just over the top of the range and my T4 around 25% through - and the exact opposite of how my T3 and t4 results read when on T4 monotherapy.
My TSH was at 0.01 but which is where it was always if i was allowed to be well on T4 monotherapy - I'm with Graves post RAI thyroid ablation in 2005.
thanks for sharing, that’s very interesting! What did you decide to do? Continue to raise ndt or just add T4?
No, I felt much improved on this dose and have been ok on just 1 + 1/2 grains for the past 6 years. and experienced subtle improvements for another year orso which culminated in my dropping a couple of dress sizes !
I don't see the point of adding in T4 - the unique ratio of T3/T4 in NDT works well for me and I'm not interested in blood test readings and do not go to the doctor for any thyroid management.
I just run a yearly full thyroid panel as I still need to supplement vitamins and minerals and I'm more concerned about keeping these optimal and I also take an adrenal supplement as RAI is also taken up up these little glands which work with the thyroid so presumed these were ' shot ' as well.
oh that’s great news! Do you mind your t4 being 25% through range?
No - why would I want it higher ?
What benefit does this pro hormone offer me when I feel well within myself ?
The guidelines and ranges were introduced to be used with Big Pharmas treatment options - synthetic T3 and T4 - which were launched on the back of NDT.
There are no guidelines or ranges for NDT you dose to the relief of symptoms.
I was asking if you feel well with it at 25% through range because I’ve heard many say they need it at 50% minimum. I am in favour of symptoms > bloods tho ofc!
Yes - I read the same and when on T4 monotherapy I needed my T4 up in the top quadrant - to give me a semi-decent T3 reading - as it is T3 that runs the body not T4 - which is mostly inactive.
NDT is a unique mix of both T3 and T4 and my thinking is - the T4 surplus to requirements and it doesn't matter if it's low if you feel well.
If on NDT your T3 were low and your T4 high I'd suspect you were not able to convert the T4 component of the NDT and likely then need think - why - and what's going on ?
at the moment I’ve got the opposite situation with is really confusing me… I did post it on the forum and there seemed to be a consensus that no one really knew why this happens. But on 1 grain NDT I was 11.8 t4 and 4.2 t3, then on 1.5 NDT I was 10.8 t4 and 4.6 t3… my t4 has dropped even tho I’ve added 19mcg of t4 and 4.5mg of t3 🤔 my tsh also halved from 10 to 4.5 so I can’t even think it’s TSH driving conversion. I’m still very fat and fatigued so very confused by it all.
Ignore the TSH reading :
Track on your T3 -
If I have this right -
these last readings show your T3 went up from 4.20 to 4.60 :
and your T4 went down from 11.80 to 10.80 :
and your TSH - for what's worth reduced by almost 50% though still much too high but at least going in the right direction now.
This is all what is meant to happen as you slowly increase your NDT dose :
The T3 will go up - the T4 will be used up and eventually be surplus to requirements and your TSH will likely be low suppressed as your T3 builds and climbs through the range :
I'm on a very low dose compared to others so don't hang on to the thought that you need to take this or that dose - just slowly keep building up and allowing your body time to adjust and go on symptoms, blood pressure, pulse and body temperature.
You are going in the right direction :
thank you for those insights that’s really helpful 🙂🙂🙂
There are no guidelines or ranges for NDT - That had always been my impression pennyannie whilst under Dr S for years but since then I've been under a hospital and a private endo (the latter who actually prescribes NDT) but both were insistent that I should remain within the blood ranges set. I was even told that I had CFS again which did fit in with being so chronically fatigued and yet I don't have the awful flu like symptoms I used to have years ago so I'm pleased you wrote that!
I think the issue is more one of the medical profession having to keep within guidelines to comply with their own medical insurance requirements rather than helping the patient find their optimal health on NDT.
I also read that Big Pharma finance the medical schools and NDT not even taught :
It was Big Pharma who launched their T3 and T4 treatment options on the back of the success of NDT and then went about discrediting this " grandfathered " treatment in order to gain and control their market share of thyroid hormone replacement prescriptions.
Oops - I've replied to myself instead of you - eek!
Well the pieces of the jigsaw are certainly being put into place (I think). I've just had results back from MMH and TSH 0.06 (I always felt well with 0.01); T4 14.1; and T3 5.0 so room to up dosage and yes I will be mindful of blood pressure and temperature. Hope you have a lovely day - you've certainly made mine😁
Good to know !!
Low and slow please - !!
I've no insurance - and just an OAP dealing with primary hypothyroidism post RAI thyroid ablation for Graves Disease in 2005.!!
Uts most likely because although you've increased you are under medicated still. Need another increase. The swelling you describe is often seen in hypothyroidism.
Glad to hear you have improvements dysautonomia wise. I have some, but not there yet, although I've been ill a lot longer than you.
People withy hypermobility are said to be like the princess and the pea if you know that story? She could feel a pea under a huge stack of mattresses. It is a bit like that I think.
I read your profile and no wonder you are wary! I think you've had some very rough shod treatment in the past with terrible results, as would be expected from that. This time you are taking a lot more measured approach and already reaping benefits despite still being hypo. I have a good feeling about NDT for you. 🙂
Princess and pea definitely sounds about right!
it’s rare I find someone ill for longer than me, I’m so sorry you’ve been at this so long! Special kind of respect for people who have done this for decades ❤️ I think the biggest lesson about my story is that I was told over and over that either nothing is wrong with me, or once diagnosed that I am treated fine and it can’t be my thyroid so I didn’t even pursue it as an option until 18 years later! 😵💫 it’s criminal! Imagine all the people walking around who feel like us and don’t even realise it’s their thyroid thinking their thyroid is taken care of 😞 I am being so so so much more measured and careful now. I’ve made a fantastic friend through this forum and I’ve made progress with her help I wouldn’t have made otherwise. I have a lot to thank this forum for! Thanks for your comments and I hope you’re right re. NDT being a good fit for me 🙂 hope T3 additions start to pay off for you!
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