I’ve been on NDT which hasn’t been working anymore as my t4 too low but when I increase my t3 goes too high. I dropped my NDT from 200mg to 40mg and started the t3 2 weeks ago expecting to start Levo a few days after. But my GP surgery is refusing to prescribe it after my private consultant recommended because my tsh is fine even though I’m on NDT and it’s secondary that is suspected which I have told them but because I never told them I was taking NDT they are behaving as if it’s all been made up.
As soon as I started the t3 I felt a massive improvement but it did give me headaches when I tried to get up to second 5 mcg dose. I dropped it down to 5 again in the morning and wasn’t getting headaches for about a week but now I am again day and night. But not when I’ve taken the t3, more at other times, especially bad at night time, I feel hungover. Also I think anxiety is worse. Is it likely to be the t3 or could it be that my t4 is now too low because it was borderline before and is probably under now? Am increasing the NDT again in case this is the case until I get my private Levo prescription. It’s hard to check heart rate and blood pressure cos I have pots and am on meds for that but blood pressure is fine still and i can’t be taking too much t3 surely if I’ve gone from 200mg of NDT to currently now 80mg and 5mcg of t3 but I only increased that in last 2 days in case it’s my low t4
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Kitkat1982
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once I’ve got them both prescribed on repeated prescriptions, I will play around with it myself to find the best combination and do my own bloods. I do feel much better on some synthetic t3 though with my fatigue and alertness. Do people take NDT and t3 and Levo?
NDT plus T3 and plus levo isn't worth it because you have too many different things to alter and juggle. People do take ndt and levo. Others take NDT and T3. It all depends on what they need - ie if NDT suits them and ft3 is good but ft4 is a bit low they add levo.
Yes they do. Dr. Westin Childs (YouTube) has highlighted a patient who was on NDT & she still had some symptoms and he added t3 to the NDT. According to her it was a successful change.
If you go through my name and find my lastest thread, I believe one of the members answered that she takes some T3 with Thyroid S.
I don't think any of your newest symptoms are remotely peculiar, your body is wondering where those extra two grains of NDT just went!
Until about 8 weeks ago I was taking NDT, levo, and T3.
It was a bit ridiculous; endo was trying to make NDT work for me and it didn't. I couldn't get my T4 high enough. Now I'm on T4/T3 my symptoms are much improved and my mental health is rapidly improving.
I’ve heard a few people saying this particularly some with hypopituitarism. I still had loads of symptoms on the NDT, I know it works well for some people but others do better on the synthetic hormones.
It makes me savage to read of scientists touting that T3 is just a placebo drug and has no effect. My OCD was all consuming in 2020. I could barely leave the house. I saw some improvement on T4 but with the addition of T3 my OCD is probably now only 10 or 15% of what it was.
interesting about the OCD. My mother has ocd and anxiety which has got a lot worse, her t3 is not high enough and I’ve told her this and that she needs t3 but she thinks she doesn’t have any hypothyroid symptoms and so doesn’t need it and that I’m the only one who says she has brain fog. I’ve been worrying that she’s developing dementia but having seen her t3 levels, I wonder how much this has to do with everything.
I would just do NDT. And drop back a little until your head ache goes away That’s the right spot for you. Split dose if it helps. Ignore the blood tests they arnt the way to drive NDT. And mixing NDT , levo and T3 will only confuse.
So take more NDT ??? This what I'm saying - you drive NDT on Symptoms and not blood tests . I need about 90mg a day, 60 for breakfast and 30 before dinner. But some days I might only take 60 and others I might take 100-120. Just depends how I’m feeling and what I’m doing. Lots of exercise I take more, feeling cold I take more, head ache or hyper feelings take less, insomnia, loud tinnitus take less, etc. I worry about how I’m feeling and what medical problems I’m having - example dry eyes, short on breath, heart flutter, tinnitus are all NDT dosage problems.
thanks. That’s interesting, I didn’t know about increasing dose for colds, exercise etc. when I increase, my t3 goes too high just over range but my t4 is still low. It increases the more I take and drops when I reduce my dose. I have just read someone say in another group that it doesn’t matter if your t3 is slightly over range if you feel good. But I got told in another group it means I’m pooling and not converting. But here people say there’s no such thing as pooling.
Everyone is different and it takes trial and error to work out what you body needs.
Personally, I feel better with T4 and T3 both high-ish in their range. On NDT I couldn't ever get my T4 high enough to feel well.
Ideally your T3 should stay in range as there are consequences to over range T3 but if its the only way you feel well then it's up to you if you're comfortable with that.
100% you will pool if you take too much Levo. Your body cant get rid of it, it has to convert it in reverse T3 and excrete it. Which blocks production/conversion of regular T3. Hence you get low T3 symptoms. And feel terrible from excess T4 stuck in your nervous system- headache, prickly scalp , all sorts of nerve issues - and a free visit to a neurologist with no outcome. You say your t3 goes high in blood test. But how did you feel, did you have good energy, feel warm, feel sharp at work. I take NDT not T3 but same thing. I analyses how I'm feeling constantly and determine if I could take a little more or maybe backoff now. It's like drinking alcohol at a party - you assess how you feel prior to having another glass. You want to be just happy all night, you don't want to get smashed and you don't want to be a sober square.
You can not take different amounts of thyroid hormone meds long term and remain euthyroid . The bodies way of accomplishing the exact required amount of thyroid hormone is through deiodinase behaviours and different thyroid hormone transporters that start with prefixes MCT-, OAT-, and LAT-.
Only a stable and constant supply of thyroid meds will allow these to do their job properly. Other hormones and transporters will also will be relying on a stable and constant dose as are influencesd by any changes.
Pooling gives the impression of hormone left sloshing about in the blood stream, unable to enter cells, but the body simply doesn’t allow this to happen. Elevated levels of thyroid hormone are dealt with by metabolising them to inactive forms.
When T3 is elevated but hypo symptoms are still felt, it is because too much T3 is being metabolised to an inactive form of T2 (3,3'-T2), and not because it remains in the blood stream. These inactive forms are not bad but a safety mechanism to help control levels.
The D3 enzyme that drives these inactive metabolites raises with both or either T4 and T3. It also raises during thyroid illness, non-thyroidal illness, and when thyroid hormone doses are permanently inconsistent, as without a healthy thyroid gland we lose the extra factor that contributes towards levelling appropriate amounts.
You can not identify taking thyroid hormone as like drinking alcohol at a party. If we drink alcohol and feel bad, thats our own fault! 🤣 but if we take thyroid hormone and feel bad, then there are multiple factors to be considered.
How do you address the bodies different daily thyroid requirements - I'm 58Y and I've been riding dirt bikes all morning in the local pine forest at 700m altitude, it was Zero deg at 8am and got up to 8 deg by 11am, drizling and I was soaked whole time today. But yesterday I sat on my bum in an office heated to 23 deg all day. I took 90mg NDT yesterday and 120mg today . If I took 120 everyday I would be super anxious, not be able to sleep and have heart palps. I argue that you need to keep your levels up so your body can draw down as needed depending on the situation. But without overcooking and having negative side effects.
Re pooling - it is the term that has been accepted many years ago in the hypo community. read any of the old stop thyroid madness docs.
It sounds to me as though you have overshot your best dose of NDT and this headache should have been seen as an overmedication symptom.
Had that been me - I would have dropped back that last dose increase of NDT and waited for my body to catch up :
I increased my NDT by 1/4 grains every week when I switched from T4 monotherapy -
How did you reach 200 mcg NDT - did you slowly build up over a course of several weeks -
and stopping at 2 grains for 6-8 weeks before running a blood test ?
In blood test results NDT if working well for you presents with a high T3 and a low T4 -
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels - do you have current readings and ranges for ferritin, folate, B12 and vitamin D ?
Thanks. I’m on much less than I was though? The 200mcg was built up over 3 years monitoring blood tests. At first I felt really well when I started it but then my hypothyroid symptoms have returned even with increased dose, I feel my t4 needs to be higher because I did well when it was mid range and t3 closer to top, now it’s right at the bottom of the range.
I’m trying to move from that to 50 mcg of Levo and 15 mcg of t3 but I didn’t get the levo when expected so I’ve been taking only 40mcg of NDT and 5mcg of t3 which is obviously not enough. I’ve just increased to 80 again. I wasn’t sure how you are supposed to manage the moving over so I just dropped the grains to 2 and then 1 and started 2.5mcg of t3.
I think my t4 is probably too low now and I haven’t been taking enough t3 to compensate possibly. Oh so NDT has more longevity than t3? Yes I’ve been splitting over the day. Thank you.
Just had another thought - maybe have a look at Paul Robinson - Recovering with T3 - I think he explains how to swop and switch treatment options - could be wrong -
So your T4 to T3 conversion is probably reasonable
Only 2 weeks on a new dose is too soon to judge it's effect.....it takes 6+ weeks for a new dose to settle into the system
Change must be slow....you will get nowhere if you rush dose change!
TSH is not a reliable marker so best ignored!
You need to be absolutely clear with your GP as to what replacement hormone you are taking otherwise they are working from a false premise
1 grain NDT = 60mcg
I grain ( 60mcg) contains 38mcg T4 + 9 mcg T3
On200mcg NDT you were taking just over 126mcg T4 + 30mcgT3
That's a fairly big dose to drop....maybe the sudden drop in hormone level is causing the headaches
Headaches are a symptom of hypothyroidism so hopefully will resolve once you are on a therapeutic dose
Your body is struggling with the various dose changes
It's not unusual to find improvement after adding a little T3, before symptoms return....the body initially appreciates the added dose then realises it's not enough and symptoms return....a cry for more!
You will complicate life if you try to add both T4 and T3 to NDT....it's not necessary.
thanks, now you do the maths it’s obvious😂 no wonder I’ve been feeling bad, I’ve been taking 38mcg of t4 and 5mcg of t3 in last few days, I was expecting to get the levo on Monday but GP surgery refusing to prescribe it at the moment. I was originally taking more t3 across the day but then thought I need more t4 so need to move back to the NDT until I can get the levo. When I first took the t3 it felt like it was going to be life changer, it’s like someone switched on the lights. I have told my GP exactly how much I’m taking now but they seem to be questioning whether I am indeed on it because I didn’t tell any of the consultants I have seen not wanting to get into a big explanation about why I was taking it- it was on the advice of a functional medicine doctor.
So once I finally get the levo, how do I manage a move over from 200mcg of NDT to 15mcg of t3 and 50mcg of Levo? Then that dose for 6 weeks and then a blood test? Won’t I end up feeling worse for a while because I won’t be getting enough t4?
Who said you would now need 50mcg levo + 15mcg T3?
Given your previous dose I'd have thought you could manage 75mcg T4 + 15mcg T3.....but GPs might run for the hills!!!
At the suggested level you will likely feel undermedicated but after 6 weeks on a steady dose you should have a reliable baseline to work from for dosing which you don't have right now
FT3 is the most important result....but GPs don't understand that
If FT3 is in range there is very little risk that you are overmedicated
T3 is the active thyroid hormone essential to every cell in the body....supply must be adequate and constant.
Good luck....it would be wonderful if there were a quick fix....but there isn't
It does for me, I’m very sensitive to medication and was so surprised as to the almost immediate effect when starting t3 that I did some research and discovered I’m not the only one, there are others like this too. I get this with all the meds but unfortunately it also means that my side effects are way more severe too.
I do but I don’t have the levo yet so have had to go back to the NDT until I can get it, I’m waiting for a private prescription. I won’t start the 6 weeks until I can get the levo. I’ve just seen that actually it’s 100mcg levo, is this a lot? Thank you.
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