Confused about latest blood tests - why are FT4 and FT3 rising, but I still feel awful and I'm undiagnosed and not on any meds?

[Overlooked]

Sorry for the super long post.... I would very much appreciate the help of you wonderful people on this forum. I am a bit confused with my latest blood test results that I just received yesterday, and am hoping that you will be able to help me understand what's going on.

I'll try to keep it brief, while hopefully still giving the relevant information.

I've been feeling unwell for about 2.5 years. Symptoms are mainly fatigue/tiredness, unexplained weight gain, exercise intolerance, decreased hair density, loss of outer third of eyebrow hair, sensitivity to cold, low mood, low libido, high cholesterol.

I have been questioning whether my thyroid might be struggling, and have asked multiple GPs, as well as an endocrinologist - all have said my thyroid is fine because all numbers are within range.

I have never been on any thyroid hormones/medication, so my symptoms remain.

Received blood test results yesterday, and the numbers are a bit confusing to me. I have posted results below, as well as previous results over the past couple of years, just for comparison.

I'm confused - my FT4 and FT3 seem to have risen (why? I'm not on any meds) and my iron (which has somehow always been excellent in the past) appears to have gone down quite a lot. I note that FT3 percentage is higher than FT4 - I read that this is a sign of a failing thyroid, but if my thyroid is failing, why are the overall percentages of FT4 and FT3 higher than previous tests over the last couple of years? Just to reiterate, I'm undiagnosed and have never been on any thyroid treatment.

Prior to this latest bood test, I thought a trial of NDT might be the answer to my symptoms. So I went into the Dr's appointment armed with my research, ready to (politely, but firmly) argue my case and request a trial of NDT. Initially, the Dr looked at the blood test results and said thyroid is fine, and went on to the rest of the results. I asked to go back to the thyroid results, and explained why I thought a trial of NDT might be worthwhile, just to see if my symptoms and numbers improved. In the end, he agreed, and gave me a prescription for 50mg NDT, plus follow up blood tests at 4 weeks to see how it's going, and blood tests again another 4 weeks later.

Initially, I was happy to finally be able to try something and see if it helps. However, when I got home and was able to look over the blood test results (had to wait for a copy to be emailed through), I'm a bit unsure whether I'm doing the right thing, because the FT4 and FT3 numbers aren't what I expected - I still feel rotten, but the actual levels have improved.

Can anyone shed some light on this for me, please?

Thanking you all for your help!

Also, sorry for the formatting of the blood test results. It doesn't seem to matter what I do, it displays everything spread out with double line spacing.

* Note: Not sure if this makes any difference, but will mention just in case.... For this latest bood test, I stayed up until 2am to try and get TSH higher (TSH rises with sleep deprivation), just so the Dr might take more notice (even though I know TSH doesn't give an accurate picture of thyroid health). I also waited until mid-cycle (I'm pre-menopausal) to do the blood test because I read that TSH is highest then. Not sure if any of that might have messed with my FT4 and FT3 values?

24 Jan 2024, 7:55am, fasting

TSH: 3.8 mU/l (Range 0.5 - 4) 94.29%

FT4: 14 pmol/l (Range 10 - 20) 40.00%

FT3: 5 pmol/l (Range 3.5 - 6.5) 50.00%

Anti-Thyroglobulin Abs (aTGII): <1.3 IU/mL (< 4.5)

Anti-Thyroidal Peroxidase Abs <28 IU/mL (< 60)

Vitamin D: 95 nmol/L

Serum Iron: 13 umol/L (10-30)

Transferrin: 29 umol/L (32-48) below range

Transferrin Saturation: 23 % (13-45)

Serum Ferritin: 63 ug/L (30-165)

Serum Folate: 38.8 nmol/L (> 9.0)

Vitamin B12: 536 pmol/L (156-740)

Prolactin: 226 mIU/L (40-570)

18 Nov 2023, 8:44am, fasting

TSH: 2.12 mU/l (Range 0.4 - 4.5) 41.95%

FT4: 12.6 pmol/l (Range 9 - 19) 36.00%

FT3: 3.9 pmol/l (Range 2.6 - 6) 38.24%

TPOAb: 0.6 (<5.6)

TGAb: 3.3 (<4.1)

Iron: 22.8 (5-30)

Ferritin: 87 (15-200)

4 Aug 2022, 8:22am, fasting

TSH: 3.08 mU/l (Range 0.4 - 3.5) 86.45%

FT4: 12.3 pmol/l (Range 9 - 19) 33.00%

FT3: 3.5 pmol/l (Range 2.6 - 6) 26.47%

TPOAb: 0.7 (<5.6)

TGAb: 1.7 (<4.1)

Serum Folate: 28.2 (>7.0)

15 Mar 2022, 9:50am, NOT FASTING

TSH: 2.01 mU/l (Range 0.4 - 3.8) 47.35%

FT4: 13.3 pmol/l (Range 10 - 22) 27.50%

FT3: 3.7 pmol/l (Range 2.5 - 6.5) 30.00%

Iron: 25.5 (7-26)

Ferritin: 183 (15-200)

Folate: 35 (16-71)

[Forestgarden]

Hi there, personally I would stay away from NDT, especially at first. Its powerful stuff. Your t4 and t3 are a little low, and your tsh is high trying to push your thyroid to make more, but your results are 'within normal range'. If you were to try anything I would suggest a little levothyroxine, but first you really need to look at your iron. I'm sure someone knowledgeable will be along to advise you on that soon.

[FallingInReverse]

I would recommend re-reading the responses from your previous posts.

Since central hypo/pituitary issues need exploring, NDT would not make sense.

Even if you had regular hypothyroidism, vs central, NDT is not the first choice for one’s first hormone replacement.

Why did you rule of Levothyroxine?

[Overlooked in reply to FallingInReverse]

Thank you for your reply. I asked Dr about possible central hypothyroidism, and he ordered pituitary MRI just to rule out a pituitary issue. Got the results at the same time as the blood tests, and Dr said no follow up required. The report said:"There is a tiny 2mm area of hypo-enhancement within the right lobe of the pituitary gland which is lower in signal to the rest of the gland. This could represent a tiny microadenoma."

Dr said anything less than 10mm is not actioned. I asked what impact that might be having, but he didn't think it significant.

Dr didn't offer Levothyroxine at any point, but did say that NDT at a small dose might be an option to try. He said this at a previous appointment, so that's why I went into the next appointment ready to ask for it because that's the option he gave me.

I was very much trying to pursue investigation into central hypothyroidism, but have seemingly gotten nowhere. I'm in Australia, and contacted the thyroid foundation here in desperation to try and find a doctor or specialist who can help me - I was told to forget about central hypothyroidism (wasn't told why).

I did not know that Levothyroxine is the preferred first option for thyroid issues - I've read so many people say Levothyroxine was no help, and that NDT is preferred. In any case, I haven't had any doctor acknowledge that I have a thyroid issue, so have never been offered any Levothyroxine.

Isn't NDT what thyroid patients were routinely given before Levothyroxine came on the scene? Why would it be a bad first option then? I'm really confused, sorry.

[Hidden in reply to Overlooked]

NDT/T3 tends to suppress the TSH and that freaks doctors out…another reason they do not like it in my experience. I totally agree with greygoose , do not be afraid to experiment to find out what works best for you. When on NDT, you should not dose by the TSH but free T3 and symptom-relief. Best of luck!

[greygoose in reply to Hidden]

NDT/T3 tends to suppress the TSH and that freaks doctors out…another reason they do not like it in my experience.

I'm not sure they even know that T3 suppresses TSH. I've never met one that knew that. Anyway, we really don't care what doctors like, they don't have to take it!

[greygoose]

Isn't NDT what thyroid patients were routinely given before Levothyroxine came on the scene?

Yes, it is. And I see no reason why you shouldn't start on it if your doctor is prepared to prescribe it.

The only reason - as far as I can see - for preferring to start on levo is for convenience. This is a UK forum, so most of the responses are UK oriented. In the UK - and in most of Europe, except Belgium - NDT is hard to procure and expensive, and very, very difficult to get prescribed. In France it's even illegal!

I still feel rotten, but the actual levels have improved.

Yes, but not by enough and not for long enough. Symptoms preceed blood anomalities by quite a long time. And, yes, you're right about having FT3 higher in range than FT4 being a sign of a failing thyroid.

Dr said anything less than 10mm is not actioned.

Well, he might say that but that doesn't make it true. What is true is that your TSH does not correspond to your low Frees. So, there's probably a problem in the making. And, anyway, technically you are hypo when your TSH goes over 3. It just shouldn't be that high. So: it's low compared to your Frees but higher than a TSH ought to be. Plus your typical hypo symptoms... To my mind, that all constitutes some form of hypothyroidism. And, whatever the form, it's all treated the same.

I'm in Australia, and contacted the thyroid foundation here in desperation to try and find a doctor or specialist who can help me - I was told to forget about central hypothyroidism (wasn't told why).

Probably because doctors believe that Central Hypo is so rare it's not worth considering. They're wrong, of course. And if they came and read on this forum they'd see that it's actually quite common. But, doctors are wrong about so many things, that shouldn't surprise us. But it does mean that a lot of poor souls go undiagnosed and suffering for many years before anyone takes any notice of their blood test results - especially with this growing trend of only testing TSH! That just shouldn't be allowed!

Dr didn't offer Levothyroxine at any point, but did say that NDT at a small dose might be an option to try.

Beware of low doses! Doctors often do this to set you up to fail. How much did he suggest? Whatever it is, the T3 in it is going to lower your TSH even further and therefore your thyroid will make even less hormone, but the hormone content of the NDT might not be enough to make up the difference, so you could get worse instead of better.

I did not know that Levothyroxine is the preferred first option for thyroid issues - I've read so many people say Levothyroxine was no help, and that NDT is preferred.

We-ell... Levo is preferred by doctors, not always by patients. But most patients have no choice. And, whilst the majority of people do well on levo, you won't find many of them of forums. Forums are made up of people who don't always do well on levo mono-therapy, plus other problems that doctors can't solve. Levo doesn't suit everyone - it didn't suit me. But, then, NDT didn't either. I'm only well on T3 mono-therapy.

Everyone is different. It's a very individual kind of problem being hypo. And you can only find out what suits you best by trial and error. But doctors rarely give patients the freedom to experiment. Which is one of the reasons some of us self-treat. Beware of absolutes, whether they come from doctors or other patients. Do what you feel is best for you. You've been given this golden oppertunity to experiment - seize it with both hands. Whatever you do, you can always back-track with no harm done. But, follow the rules for taking hormones - all hormones - start low and increase slowly. For NDT that means starting with 1/4 grain (if you can) and increasing by no more than 1/4 every two weeks minimum. And, best to leave six weeks on a steady dose before restesting, give the body time to adjust and settle. Four weeks is too soon.

[Overlooked in reply to greygoose]

Thank you Greygoose - such useful information!Dr suggested 20mg to start, but ended up prescribing 50mg NDT. Is one grain about 60mg? If so, is 50mg to start too high?

He didn't give any instructions to increase the dosage, so it's supposed to be 50mg per day for the first 4 weeks at least. Does this sound like a good approach? Am I setting myself up for failure by keeping a fixed dose for a month?

The Dr wanted blood tests at 4 weeks because he was quite concerned about how my body would react to the NDT, given that it's my first time having any thyroid treatment at all. I suggested 6-8 weeks, but he said no harm in doing it earlier, and then repeating at 8 weeks.

Very much appreciate your help again!

[greygoose in reply to Overlooked]

I didn't even know you could get NDT in 50 mg pills. Yes, one grain is 60 mg. Have you already 'cashed in' your prescription and got 50 mg pills? Maybe he made a mistake but the pharmacist would know.

I would say that is too much to start with, yes. And starting too high can make you feel worse. If it is 50 mg then I would cut it in half.

He didn't give any instructions to increase the dosage, so it's supposed to be 50mg per day for the first 4 weeks at least.

Yes, well, either he has no idea what he's doing, or he is setting you up to fail. And no, that doesn't sound like a good approach.

The Dr wanted blood tests at 4 weeks because he was quite concerned about how my body would react to the NDT, given that it's my first time having any thyroid treatment at all.

But testing at 4 weeks is not going to tell him anything much. lol It's your symptoms - or improvement in symptoms - that will tell him how your body is reacting. If he is capable of understanding them. And, it's too soon. Everybody has to have a first time but that doesn't mean that testing at 4 weeks is a good idea. And it may do no harm but it isn't going to tell him much. But maybe you can drag those four weeks out a bit by various ruses. We have to learn to play them at their own game.

[Overlooked in reply to greygoose]

I haven't got the prescription filled yet.

So if it is 50mg, do you think that cutting the pill in half and just starting with 25mg would be ok?

And then possibly increasing it after 2 weeks? Would it make sense to then just use the 50mg pill at the 2 week mark (ie. start at 25mg, then increase by another 25mg at 2 weeks), or do you think that's to much of an increase initially?

Also, in terms of the blood test, do you think I should try to do it at 6 weeks, or would that be too soon as well?

Sorry for all the questions. I'm really wanting to give this the best chance of working, if possible.

Thank you again for your excellent help!

[greygoose in reply to Overlooked]

Never apologise for asking questions. That's how we've all had to learn.

It's tricky because ideally, even if you started on 25 mg, it would be better to increase by 1/4 pill every two weeks. But, if the pill is too small, you can't do that. If I were you, I'd get the pills first, and then decide what to do based on how small you can cut it. But, increasing too quickly/by too much at a time can be countre-productive.

I think 6 weeks would be a good time to test BUT that has to be six weeks on a steady dose. If you change the dose during that six weeks, the test is not going to be helpful.

Have you already made your next appointment with this endo? Or do you have to wait until you've got the tests done to make the appointment?

[Overlooked in reply to greygoose]

This is not an endocrinologist, it's a GP. I haven't made my next appointment yet. I was supposed to wait until the tests are done, and then make the appointment.

I've been feeling sick in the stomach at the thought of starting NDT after I read the first couple of responses on this thread. I'm second guessing everything now, and I keep asking myself if I'm about to make a big mistake.

Thank you, again, for your continued responses and for sharing your wisdom and experience. I really appreciate the knowledge you have freely shared. It's been such a help. This forum is amazing.

[greygoose in reply to Overlooked]

Yes, those first two responses were unfortunate. But, there is absolutely no reason why you shouldn't take NDT. I understand what they're saying about not knowing how well you convert if you start off by taking T3. But, frankly, does it matter?!? I don't think it does if you can get a steady supply of NDT. I would just ignore all that, if I were you. Just as long as you follow the protocol and start low and increase slowly. It's not going to do you any harm.

Please don't be afraid of it. It's been used for over 100 years. In the beginning, when they first started to understand what caused hypo symptoms, the only treatment was chopped up, raw sheep thyroid! Thank god we've moved on from then! lol Next came NDT and thousand of people took it for about 100 years with no harm done. I think I'm right in saying that NDT has never killed anybody! Which is more than you can say for a lot of drugs! (NDT is not a drug, by the way, it's hormones.) Quite the contrary, people got better and were able to live full lives.

But, then someone found out how to make synthetic T4, and someone else invented the TSH test, and it was all down-hill from there.

I'm not saying that NDT is any sort of miracle treatment - although some might think it is - it doesn't suit everybody, any more than levo does (neither suited me!). But it's most certainly worth a try. So, give it a go and see what happens.

As for your next test being too soon, as you don't have a dead-line, you can make all sorts of excuses for draging it out: you had flu, you've been on holiday, called away to nurse a sick relative, work engagements, etc. etc. etc. I'm sure you can think of other excuses.

[Overlooked in reply to greygoose]

Thanks, Greygoose. Super helpful! Appreciate the encouragement!

[greygoose in reply to Overlooked]

You're welcome.

[Overlooked in reply to greygoose]

Just an update... I spoke with the pharmacist about the NDT dosage, and splitting pills, etc. It's a compounding pharmacy, cause that's the only way to get NDT here in Australia. Not many of them around, but they're the ones that deal with NDT and T3 prescriptions - regular pharmacies don't. The compounding pharmacies make up the pills specifically for each individual patient, according to whatever the doctor prescribes for each individual.

So... he said they are all capsules (not tablets) just filled with whatever is stated on the prescription, therefore I won't be able to split pills.

He said, in terms of trying to reduce the dosage initially, I could open the capsule and pour out some of the powder, but that would be pretty inaccurate in terms of dosage.

He said that, in his experience, 30-60mg is a typical starting dose for NDT. He said if it was 100mg, he would immediately be saying that's too much, but he felt that 50mg should be ok to try - and obviously be monitoring how your symptoms go, and how your body responds.

He agreed that it will take 6 weeks before blood tests will show what's happening with the numbers. He emphasised that symptoms also need to be guiding the tweaking of the dosage, and that this is a long term game.

I'm not sure if I'm feeling better about starting or not. It was nice to speak with someone who actually knew about thyroid hormones and T3 and T4 and how it all works, and it seemed positive that he thought 50mg was ok to start with.... but I still wonder if it's the right thing to do 🫤.

[greygoose in reply to Overlooked]

OK, I didn't know that about NDT and Australia.

He said, in terms of trying to reduce the dosage initially, I could open the capsule and pour out some of the powder, but that would be pretty inaccurate in terms of dosage.

Yes, I take his point. But, the inaccuracy wouldn't be all that important just for a few days. Just to get your body used to taking it. Ease your way in, so to speak.

but I still wonder if it's the right thing to do

Well, let's look at it from another angle: Why wouldn't it be the right thing to do? What are you afraid of?

[Overlooked in reply to greygoose]

What am I afraid of?Probably the unknown. Mainly afraid of a potential bad reaction, or maybe doing some sort of damage - it's all just fear, and not necessarily based in fact.

Also thinking about what other people have said about NDT - some positive, but some negative. Wondering if I'm dabbling in things that I shouldn't be. Especially since I have no diagnosis - I sort of feel illegitimate. I know this doesn't necessarily make rational sense.

I think it's mainly just the unknown - I've never done this before, in any way, whether with levo or otherwise, so I have no idea how my body might react. I guess there's only one way to find out.

I like your suggestion of tipping out some of the powder from the capsules, just for the initial period. That sounds like a safer approach.

I am so thankful I stumbled across this forum. Thank you, Greygoose, for your help - I really needed it!

[greygoose in reply to Overlooked]

What am I afraid of?Probably the unknown.

I expect most of us are afraid of that. But, a lot of us get to the point where they unknown appears far more attractive than what we're living through. Don't let yourself get to that point. Take action now.

Mainly afraid of a potential bad reaction, or maybe doing some sort of damage

On the dose you're starting on it's highly unlikely that you would do any damage. You'd have to be very, very over-medicated to do that, and it's highly unlkely that you ever would be. Doctors prefer to under-medicate their patients rather than over-medicate.

A bad reaction? How bad can a reaction be that it's worse than what you're living through at the moment? And, if you do have a bad reaction, just stop it.

Also thinking about what other people have said about NDT - some positive, but some negative.

As I've said before, NDT doesn't suit everybody. But, to know if it's going to suit you, you have to try it. And the same goes for levo and T3. Nobody can know in advance what is the best treatment for themselves or for anybody else. And, just because it doesn't suit someone that posts on here (like me for example! lol) doesn't mean it won't suit you. Try it and find out.

Wondering if I'm dabbling in things that I shouldn't be. Especially since I have no diagnosis - I sort of feel illegitimate.

It's not exactly witchcraft, you know! lol And obviously it's not illegal in Australia. As for the diagnosis, do you have any idea how hard it is for most people to get one, even if it's so clear that they're hypo a child of three could spot it? There are many, many people out there who should have a diagnosis but haven't got one due to the ignorance of doctors. I should have had one at 8 years old. But I didn't get one til I was 55! All those lost years! I could have ruled the world but ended up being a pretty mundane, lethargic sort of person. I would have jumped at the chance of trying NDT, or anything else, come to that.

I think it's mainly just the unknown - I've never done this before, in any way, whether with levo or otherwise, so I have no idea how my body might react.

Well, there's a first time for everybody, and none of us know how our bodies will react. Your body will probably say 'hallelujah, at last!'

[Overlooked in reply to greygoose]

Your body will probably say 'hallelujah, at last!'

I hope so! Thank you, your advice is very reassuring. Really appreciate it.

[greygoose in reply to Overlooked]

You're very welcome.

[FallingInReverse]

greygoose Overlooked

The only reason - as far as I can see - for preferring to start on levo is for convenience

Since T3 is testing slightly higher than T4, and central hypo is a possible suspect, wouldn’t one then look for a T4 approach first as a consideration before jumping in with NDT with T4/T3? Maybe NDT is different because it’s an all in one, but isn’t it safe to say that T3 wouldn’t be recommended to start in this case?

Although this thread is making me wonder …

is convenience the reason people in the uk don’t choose NDT?

Are there studies that show what is statistically more effective for new hypo folks. Independent of the drug companies and the health care system you are in?

If it was more convenient in the UK, do you think more people would choose it?

Further, from what I’ve seen here reading about the NDT approach “dosing by symptoms “ and not by blood tests anymore… that sounds more imprecise than Levo/Lio where at least I’ve got my blood tests as a quantitative backup to the unreliability of “feeling” of over or under medicated. Do those on NDT find that not relying on blood tests is neutral or more challenging?

I know why most people here eventually try NDT, would love to know if more people would start on it if convenient.

“Whatever you do, you can always back-track with no harm done

I see this very differently. Backtracking is extremely time consuming. Titrating and changing take 6-8 weeks as we all know.

I am on T3 and wish I could “backtrack” but have a series of 6-8 week changes planned before I can do that.

Yes it’s true that there is a UK bias in this forum, but I’m in the US and, I think very much like Overlooked, I can get what I need just by asking.

I was given T3 early and wish I hadn’t - I’m stuck trying to balance multiple pills and chopping them up, and I don’t know if Levo-only would have worked. This past year would have been way simpler if I could just have on Levo pill a day.

I’ve been told that if I have T3, why not keep it since the bias here is that it’s so hard to get.

So yes, understanding the convenience-bias is important. Therefore - is Levo and NDT equivalent as a starter option? Or does one have any clinical advantages over the other. If that’s the case, that would change my own mid-term titration plan I have set out for myself.

[greygoose in reply to FallingInReverse]

wouldn’t one then look for a T4 approach first as a consideration before jumping in with NDT with T4/T3?

Not necessaryily. The FT3 is higher than the FT4 because the thyroid is struggling/failing and trying to keep you alive. Start taking thyroid hormone replacement and all that would change. And, besides, the FT3 is hardly high enough to preclude taking T3, the OP still needs it higher.

is convenience the reason people in the uk don’t choose NDT?

People in the UK don't have any choice! They are put on levo and told that that is THE treatment for hypo. And, I doubt many people have enough knowledge of thyroid to be able to make a choice, anyway. We're talking about it in a knowledgeable way because we've been reading up on it - some of us for many years. But you average patient, feeling ill, never heard of a thyroid anyway, wouldn't know what was what. No, it's convenient for the doctor, not the patient!

Are there studies that show what is statistically more effective for new hypo folks. Independent of the drug companies and the health care system you are in?

I very much doubt it. And why would any of them be more effective than another just because you're 'new hypo folks'. No, it's all down to the lousy education doctors get on thyroid.

I can get what I need just by asking.

Well, you've very lucky, then! That is not the case in the UK/Europe in general.

Further, from what I’ve seen here reading about the NDT approach “dosing by symptoms “ and not by blood tests anymore… that sounds more imprecise than Levo/Lio where at least I’ve got my blood tests as a quantitative backup to the unreliability of “feeling” of over or under medicated.

I don't think anybody ever suggested that one shouldn't do labs just because you're on NDT, just that symptoms, and the elimination of them, is more important. Especially with a doctor that just tests TSH and has no idea what a T3 is. Testing TSH won't tell you if you need an increase or decrease in dose. And that's another way in which you're luckier than us: you can get full thyroid testing more easily that most.

I see this very differently. Backtracking is extremely time consuming. Titrating and changing take 6-8 weeks as we all know.

Well, of course it is! But sometimes you just don't have the choice. I said that because I don't want the OP to be afraid to try. It wasn't a recommendation!

Took me years - nearly ten years? - to discover that T3 only was the right thing for me. And I only managed that because I decided to cut out doctors and self-treat, because no doctor was ever going to help me. So, I do know something about lost time.

Therefore - is Levo and NDT equivalent as a starter option? Or does one have any clinical advantages over the other.

Well, NDT does, obviously. Because it contains T3. You're going from a healthy thyroid that makes T4 and some T3, and also converts some of that T4 in situ, as and when you need it, to a daily dose of T4 only that you might or might not be able to convert at a cellular level - and you'll probably be under-medicated anyway, because the doctor is dosing by the TSH! Not difficult to chose put like that, is it.

Don't get me wrong, I'm not the one advocating starting on levo (for whatever reason). I say if you have the chance to start on NDT, give it a go! That said, NDT doesn't suit everyone, but neither does T4 - nor even T3. What we need is the freedom to find out what suits us best, and that is not something doctors are willing to allow.

[FallingInReverse in reply to greygoose]

greygoose 100% .

This thread is interesting to me as it feels as if the OP has a similar set up to me.

1) Our doctors. They are indeed deeply misinformed and not educated even on the basic basics (much less the nuances.) While at the same time, I believe, they are also very very well intentioned. Overlooked my experience and many others (and as you might be beginning to sense) the most steady, reliable, knowledgeable, actionable advice you will get is from this board. When in doubt, assuming your doctor doesn’t know the what’s and why’s of things will actually help you be less confused.

2) Access/availability. Whereas people are people, and doctors have egos, obviously the structure of the underlying healthcare/insurance system is impactful. Nothings perfect - I won’t go down that rabbit hole right now. But there are some of us (I think OP is closer to this too) where it’s more/most likely we can ask for and get what we need. Maybe one day I’ll get push back, but the 6-8 week bloods prescriptions I ask for, then the meds prescriptions renewals I detail out and ask for, has no push back.

And so I am sitting here with a choice. When I said “new hypo folks” I was thinking - given the choice, what would one plot out as the decision tree of treatment at the very beginning. I know we are all different. But even in this board I bet (??) that most of us would say start on Levo mono before adding T3. Or, start with a pill before doing liquid. Ie, I’d have preferred to stick with Levo thru full replacement dose BEFORE adding T3.

So interesting and unique/rare question for Overlooked - right at the beginning of the journey! In their shoes, knowing what I know now, and with full access to Levo, Lio, NDT… would I have asked for NDT instead.

Pondering this question would also absolutely change my directional thinking. It’s the ultimate exercise in Bayesian decision-tree strategies.

[Overlooked in reply to FallingInReverse]

FallingInReverse, just to be clear, and not to give the wrong impression to anyone who might be reading this - I cannot "get what I need just by asking". That may be the case for you, but not for me, and not for most others in Australia, unfortunately, as far as I am aware.

I have been to various doctors over the past couple of years, and this is the first time any has offered for me to try any sort of treatment at all. It was the doctor (not me) who suggested a small dose of NDT, so that is what I had to work with. I wasn't offered Levothyroxine.

From my experience and research, as well as contacting different pharmacists, doctors, and other professionals, it would definitely not be the norm to be offered NDT at all here in my country. It took me a lot of searching and asking to find this current doctor, and even though he is willing to prescribe NDT (for a trial), it certainly wasn't his intended course of action (he told me my thyroid was fine when he saw the test results).

If I could get what I need just by asking, I would have had help long ago.

[EchoWS in reply to Overlooked]

Hi Overlooked,

I think you have done very well in advocating for yourself and getting a starting dose. I take NDT with additional T4 and am still working on getting T3 up. You have some good advice above about your first few days taking half a dose. Your TSH is over 3, you feel hypothyroid and have symptoms (including cholesterol so know your research). Yes, last readings for T3 and T4, a hair higher, but you have been tracking this for a while and having the TSH going over 3. I would hope you try your NDT, anticipate slow increases and retest as recommended here.

[Overlooked in reply to EchoWS]

Thank you for the encouragement!

[FallingInReverse]

 Overlooked I hear you, and this thread has been very helpful to me in seeing the impact the medical systems of the NHS (and it seems Australia's similarly) create a lot of nuance in how Levo vs NDT are experienced and discussed.

This has been a great thread to understand that starting on NDT or Levo are equally fine choices. And ultimately, it's all so individual what we tolerate, so we all figure out what works for us over time anyway - switching from Levo to Lio/T3 to NDT as necessary.

I was also asking for myself - curious if everyone did have a choice, would there be an opinion of whether Levo or NDT was "better." I did wonder if clinically there was something that said - if given a choice - is one option statistically more likely to have a better outcome on average.

I can see why if you don't have a choice it doesn't even make sense to ask the question. I do wonder if there is an answer somewhere out there. But at this point with what we know...

It looks like the downsides are NOT clinical - rather the convenience factor (like noted here: healthunlocked.com/thyroidu...

Another thread here was discussing what I referenced above - once on NDT how changing your dose differs from changing Levo dosing, this might be relevant for you as well as you start on NDT:

- healthunlocked.com/thyroidu...

- healthunlocked.com/thyroidu...

Congrats on winning the prescription battle with your GP.

I am sure at this point you've picked up your NDT Rx and are on your way. Look forward to hearing how you're feeling!

[Overlooked in reply to FallingInReverse]

Thanks, and I will definitely have a read through those posts on dose changes for NDT - I actually have already come across these in my 'research' (ha, I've been doing a lot of reading on this forum), but good to go over it again.

I think it's not bad to ask the questions you asked, but I suppose you are correct that it perhaps doesn't matter in cases where the patient isn't given any choice to start with.

I guess one's preferences don't really count for much if you end up not doing well on said preferred option.... and you will only know that once you actually give a particular option a go. It will be interesting to see how I go with NDT.

Appreciate your thoughts and sharing your experience as well!

[FallingInReverse in reply to Overlooked]

Thanks. I learned so much with your post about how to think about NDT.

Also, I am excited for you. None of us know what the journey will be like in advance, but there’s nothing like getting on your way after years of feeling awful. The immediate benefit of this board: no more mystery, no more confusion, we might not feel better immediately but there is such tremendous peace in understanding our blood chemistry and taking control.