I've tried NDT for over a year up to 3 grains now (1.5 at 4 am 1.5 at 1pm). But I am totally exhausted, everything seems worse. I am concerned that the T3 is affecting me badly. T4 at last test was only 12 (ref range is around 10 -21) My bp is very low and heart rate averages at 54.
Can anyone recommend the best way to change back?
Getting desperate, thanks all.
How many brands of nt have you tried? I cannot use erfa or thyroid s because of the fillers which Mae it harder to break down. I have never used armour, but understand that many people became hypothyroid with it when the formulation was changed.
I do well with thiroyd and Naturethroid. I know others have the same problems....
G
3 questions:
1.How much synthroid were you on?
2. what is your TSH reading when T4 is at 12
3. do you have autoimmune thyroiditis or something else?
If your TSH is elevated with T4 at 12 then you're clearly hypo. If not then something else is going on. I don't believe T4 alone is a good measure of anything without the rest of the picture. Also I'd advise visiting the doc and getting help with this. I'm coming off thyroxine as it's suspected I've been overmedicated for ages (TSH 0.24 T4 19). Both are in range (as is your T4) but at opposite ends of the range (my TSH = low, T4 = high). I've been feeling hideous for about 18 months - vision's become impaired, all the classic hypo symptoms.
It sounds as though you need a more holistic view. Sidenote: my doc reckons my adrenals are having trouble so we're aiming to get them working properly first then resuming a lower dose of thyroxine because adrenal problems present with similar symptoms to hypo. I've been hypo for 10 years but my thyroxine dose has been reduced from 150mcg-100mcg. Now we plan to cut it to 50mcg but only after a full blood panel: fT4, tT4, fT3, tT3, rT3, TSH and thyroid antibody test. We're also checking DHEA and cortisol to establish adrenal function. I definitely don't advise changing medication or approach without all the data or it could make everything worse.
To transition I've come off levothyroxine for 10 days and will start a new course after I've prompted my adrenals to work better. Ironically 8 days off thyroxine and I feel like a new person. Good luck...force them to get the whole picture so the decision to change meds is informed...
I get increasingly confused when I read these posts. I thought I had it all Sussex out and then I read something else.
Did you mean TSH is low and T4 is high? I thought that is what we are all aiming for? Or did you get it the wrong way round? Or am I just totally wrong?
No I think you are right and that is what patients on thyroxine often aim for. However I felt awful with a slightly above top of the range fT4 on thyroxine and TSH of 0.07. In my case I suspect high rT3 was the problem. I feel much better (on Armour) with fT4 in the bottom of the range and my TSH suppressed at 0.02 
I am aiming to get my fT4 mid-range and fT3 neat the top of the range as I think (hope) that this will be perfect 
xx
You are right if you are taking Armour or just T3 of course but it looks like Skyfall is on just Thyroxine which should aim for low TSH and nearer top of the range T4 which is why I was confused.
Did you see my post today? Very scared I was overmedicated. I have left off my dose of T3 today and will see how I am tomorrow. Looking forward to my call with Dr P on Friday.
Sorry I meant Audreekie.
Looking at your results Skyfall and I don't think you look over-medicated, although I don't know your ft4 range. Just wondering if you are feeling very hypo due to rT3? I see you are having this tested, as I think this is what happened to me a year ago. I am feeling so much better on Armour with a much lower ft4, good ft3 and suppressed TSH. Just wondering if this may suit you better too? Xx
Auldreekie, is it possible that you're overmedicated? I know that many people take 3 or more grains, and there is a mantra to keep increasing the dose because most people need at least 2 grains etc.
But speaking purely from personal experience, the first time I tried desiccated thyroid I just didn't get on with it. I now know that it was at least partly because I was on too much (and possibly because Armour was the wrong brand for me). Two grains was too much. I went back to levo, but couldn't get the dose right with that either, so tried a different brand and lower dose of desiccated, which works much better for me.
Do you have any other test results - TSH and ft3 to go with the ft4? Just wondering if you need to increase further? lots of people need more than 3 grains I believe. Xx
If you do want o change back then 3 grains contains 112 mcg of thyroxine (38x3) and 27mcg of T3 (3x9). t3 is approximately 4 times stronger than t4, so the T3 equates to 108mcg of thyroxine. So the total equivalent dose of thyroxine would be 220mcg. What dose were you taking before the NDT? Xx
Hmm all of this is very interesting, thank you all. I'm on Nature Throid. I was on 100mcg of thyroxene with high FTs and unreadable TSH they don't like that! The endo made me lower to 50mcg felt like death! I've got autoimmune thyroid disease. But NHS endos won't test antibodies nowadays. (10 years ago I had private doctors diagnose Graves antibodies so started hyper on B&R for 18months then hypo till now.)
By the way the doctors don't know I'm on NDT!
Having been hypo for some years I recognise the death like feeling . I've also been hyper in my time and know that jittery feeling. But now I am nauseous, thumping heart (this has improved a little) as well with aching legs (hip x rays says 'normal joints'). I was supposed to go to Guys today for 2nd Dexa scan (last one 2011) but I just couldn't face 2 hour journey with snow! Going next week now. I've got to get myself to work tomorrow - dreading it, this is getting pretty serious. I've complained of exhaustion for years, even when over medicated still exhausted!
I had a endo appointment three weeks ago he tested everything (except antibodies!) but bluddy NHS are taking ages to get results to me! I've asked for ranges too. Last T3 was 4.7 in October, (on two grains NDT) I think upper range is 5. TSH was .78 (last time it was that high I was ready to commit suicide!) .
I know my adrenals are bust I had a Genova test 5 years ago, cortisol was high am then virtually disappeared. But Nutri Adrenal makes me pee all the time (the B vits I think).
I am putting together medical questionairre for Dr Myhill (she can interpret by e mail as she can't take more patients). But the NHS is so slow with results.
What I am really worried about is Addisons as I've never been quite this unable to get out of bed.
I did Active B12 test but it came back really high (170 replete) but i wonder if I didn't stop supplements soon enough???
I am also waiting for Pancreatic functions tests and some others from Gastro enterologist (NHS) as my guts are a mess! Again appointment was weeks ago grrr!
I suppose I should wait to get all of these results back before making a change.
I am rather confused about what is the optimum dose for NDT though, it seems to vary hugely.... and appears not to suit everyone. I thought about buying Paul Robinsons book about the Circadium rhythm system but reviews weren't that good - any thoughts on that anyone?
thanks again for all of your input.
Skyfall I think you are probably right re Adrenals but NHS won't look at Refers free Ts or antibodies. is your doctor private?
I ordered the tests myself initially then went to functional practitioner who ordered more. In the US endos do all these tests without question (fear of litigation?). The UK is just VERY backward in effectively treating thyroid. I've also spent a lot of time in Australia - same as US plus an enlightened GP so everything was handled through medicare.
Quite honestly I've decided to get a full picture myself with a functional prac's help then go back to my GP with the results. They don't like that but it's my health. I'm fed up with them treating one part of the endocrine system at a time. Because I'm in range they won't refer me to an endo. AND even though we have private insurance it's pre-existing condition so it's down to me.
Permanently suppressed TSH isn't how the body's naturally meant to operate so simply being on thyroxine and varying that dose feels like using a hammer to crack a nut without knowing how big the nut is. Frankly I hate (As I'm sure many of you do) the one-size-fits-all approach to thyroid without proper, 360 degree investigation to ensure that's the only problem.
I also want to know WHY I have this and what's CAUSED it vs just medicating the symptoms. I suspect stress has played a huge part. If my medication actually worked and I wasn't still horribly symptomatic as many of you are I'd resign myself to a life on thyroxine but that's not the case. I'll keep you posted on progress.
I've also been hyper in my time and know that jittery feeling.
One of the reasons I didn't realise that I was overmedicated (on both desiccated and levo), was that I did not get the symptoms I was expecting to get with overmedication. I felt like death, aching legs that struggled to get me up the stairs, hardly able to get out of bed or off the sofa. In fact, many of the hypo symptoms i had were replicated when overmedicated.
Last T3 was 4.7 in October, (on two grains NDT) I think upper range is 5.
That to me, is a definite clue that you might well be overdosing on T3 now that you're taking 3 grains.
In your situation, I'd be tempted to not take any thyroid medication for a couple of days. If you feel some improvement, it might be an indication that the dose was too high, thus you could re-start at a lower dose.
If your 'supposedly ideal' dose of levo was 100mcg, then that suggests somewhere around 1.25 - 1.5 grains might be a better dose, at least to start with. Some people need to top up their T4 a little by adding a small dose of levo (e.g. 25mcg), instead of increasing their desiccated dose.
Obviously, I'm not medically qualified, and don't consider myself to be an expert by any means. Just working through what I have experienced and dealt with myself.
I also think taking your first dose at 4am in the morning might not be appropriate for you. When i did an adrenal saliva test, I had high morning cortisol too. This suggested to me that I should not take my first dose too early. I actually am currently splitting my dose into three, with the first dose at 7am.
RedApple thanks so much for replying, I don't many doctors who have the insight needed with this illness, it's only peeps that have been through this stuff 'get it', so it's brilliant to be able to 'talk' to y'all!
I'm going to take a break as you suggest try a break and re-start. I certainly can't feel much worse than I do already!
thanks again, will report back very soon!
When I first read your post, my immediate thought was "adrenals". Now you have clarified that you know your adrenals are not good, I do think that may be at least part of the problem.
If you don't get on with the Nutri Adrenal Extra, you could just try Nutri Adrenal. That's what I did. It doesn't contain anything other than the adrenal glandular.
Another question is, how did you feel on synthroid before your GP wanted you to reduce your dose? Sometimes taking a high dose to suppress TSH can be helpful with autoimmune thyroid disease so perhaps this was helping you.
NDT doesn't suit everyone and Synthroid does suit many.
As for the circadian T3 method, it sounds pretty sound to me and the book has been recommended highly although I haven't read it myself yet. I know many people have a lot of success with it.
Since reaching 1.5 grains of NDT I took it as three doses through the day; one dose at around 6am, one at around midday and another dose shortly before bed. I'm now on 3.5 grains and stick to the same schedule but with larger morning and midday doses and just 0.5 grains at night. Some people find they need to take smaller doses more often. It might be worth adjusting the times of doses to see if it helps. I also agree with RedApple that the 4am dose might be causing a problem. Paul Robinson suggests starting with your first dose about 1.5 hours before you would normally get up and increasing that interval slowly if you are not getting the desired effect after a certain period of time.
It might also be worth taking your temperature 2 hours after your first dose and then again every 3 hours for a few days to see what is happening.
Your low heart rate could be adrenal and/hypothyroid but low blood pressure is usually an adrenal issue. Hypothyroidism often causes high blood pressure, but of course we are all different.
I hope some of this is helpful and I hope you find the answer soon. Remember that what works for one person won't necessarily work for another, but I'm sure there will be an answer that works for you
Carolyn x
Going from NDT to T3 only. 
Changing from NDT back to Levo
When am i going back to work? Will you feel better monday?
From Hypo to Hyper - I know this is not possible so what's going on?
