I have been self treating with NDT for 17 months. I increased my dose very gradually up to 3.25 grains. There were slight improvements in my energy and brain fog initially but I have not seen the improvement that I need to allow me to function or have a quality of life. I am considering a trial of T3 to bypass any conversion or reverse T3 issues that I may have that may be preventing me from improving my health and energy levels.
My last blood tests last year showed that my TSH was suppressed with T3 and T4 in mid range not upper third of the range, which is optimum.
I supplement my diet with all of the recommended vitamins and minerals. I eat an organic diet free of gluten, dairy and soy, processed foods etc.
My GP is useless bordering on negligent. I am contacting her this week to request (yet again) adrenal / cortisol testing again as my sleep pattern and energy levels correspond with low cortisol. I would also like her to rule out Addison's as my energy levels and functioning and ability to handle stress are so depleted. I will also do a saliva cortisol test when funds permit this.
I appreciate that we are all biologically unique and there are no definitive answers, but would appreciate any thoughts or experiences that relate to my current dilemma.
I have been ill for many years and I am determined to regain my health and quality of life. If you have the time / energy to let me know your thoughts I would be very grateful to hear them. Thank you.
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Hypogo
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When thyroid hormones do not work it will be down to several reasons. The main one being the ability of cortisol to take the T3 into the cell. If this is not working so well, no amount of thyroid hormone will work.
I think the thyroid and adrenals system need to be nurtured together when this happens. You need to balance the thyroid and adrenal side yourself. It is thought the adrenals will come to life when thyroid is there over time, but often this doesn't happen. This can be due to using to much thyroid meds or to much T3 medication. High thyroid usage will suck up cortisol to fast and so leave a cortisol deficit. This is why thyroid needs to be used slowly and the timing of the dose can be important.
I prefer to use T4/T3 synthetic because you can tailor the thyroid ratio to suit your adrenal capacity. If adrenals are really struggling then you don't want to use a lot of T3. However, there is also the section of the thyroid community who use T3 only and will specifically boost adrenal output from early morning T3 usage. So it is a complex issue getting on top of thyroid/adrenal issues.
For me, T4 and low dose T3 usage is a protocol often over looked. This means using a ratio of 95-98mcg T4 to 2-5mcg T3 per day. e.g.. 100 T4 and just 2 -5mcg T3.
Also looking to get the Ft4 in the mid to upper third range is fine and the FT3 in the upper third range. It would be better to have a working and not suppressed TSH. So around 1 or under is good, but not suppressed.
A suppressed TSH indicates absorption at the cell level is not going as well as it should.
Timing of the dosage of thyroid can be very important in some people. Have you looked into bedtime dosing ? We make our thyroid hormones when we go to sleep and then make cortisol afterwards just before we wake up. So often low thyroid patients will have low cortisol levels on waking. They will then take the thyroid meds on waking, but won't have enough cortisol to really kick start the healthy thyroid/cortisol interaction.
So thyroid at bedtime or a few hours before bed is a good idea. This applies more to T4, but a little T3 can be used as well. Again this is a reason i prefer separate T4/T3.
I have never tried T4 monotherapy as I am sensitive to a lot of chemicals and medications so tried the most natural option with least fillers possible.
As far as I have been made aware, where T3 is taken, it will often lead to a suppressed TSH. My TSH became suppressed when I was taking one grain of NDT - minimal T3 - not even a therapeutic dose. I am not convinced that a suppressed TSH in these circumstances is cause for concern as to self treat within ranges would cause a lot of people to be undertreated, which has far more significant implications for health and wellbeing.
I have looked into the CT3M method briefly. I feel that it is best to have my adrenal health screened to rule out any issues that require treatment before I try to address my adrenals beyond supplementation. I have requested these tests from my doctor prior to self treatment. I will be doing this again in writing. I agree that any weakness in adrenal function will impede thyroid treatment.
It is good to hear that you have found a treatment that works for you. Long may it continue 👍
My Endo when I went over to NDT after correcting my conversion problem , told me that TSH will becsuppressed or even zero, FT4 can fall down the range but FT3 should be high in the range but never over. But I'm wondering that you have gone over where you should be. I followed instructions in increase by half a grain until you reach 2 grains then increase in quarters. My new Endo told me to drop down to 1.75 and I was surprised that he was right. Thinkinging back I remembered having a time when I felt a little better but then took more and I missed my spot as that time I was taking a large increase. I also discover being slightly over felt as bad as being slightly over. So never dismiss dropping back a bit if increasing isn't making you feel a little better when you add in some more.
Thank you silverfox7 this is a good point and a possibility. I don’t remember feeling any better on my recent increases even though I increased very slowly by a quarter of a grain at 3 - 4 week intervals.
My next step is to reduce my NDT to 1 grain and add in 5mcg of T3 in the am and 5mcg of T3 in the early afternoon to start. This will allow my body to adjust very gradually to T3, while still having the buffer of the 1 grain of NDT whilst I am increasing my T3 dose. I am aware that this is a much lower dose than I am currently taking, but if my body does not process T4 very effectively, for whatever reason, it may mean that I end up on a much lower dose of mainly T3.
I was considering a weekly increase of 5mcg - slow but steady until I reach a total T3 therapeutic dose of 50mcg. Then holding for a while.
I will be keeping a diary from the start of me taking T3 to monitor changes in metabolism, mood, temperature, pulse, blood pressure and decreased or new symptoms.
Thank you for your reply. I need to consider identifying my optimum treatment level as clearly as possible when I add T3.
Well that was my experience and after that if I don't feel right I tend to drop back and hold for a couple of weeks and see what happens. I was horrified when Endo said to drop but thought I would see what happened! He did tell me to stop taking it for a while but can't remember how many days, may be 3 but not sure but when I saw he was right I was horrified I'd gone so much over! Felt a bit better about if when I realised that I'd gone from 1.5 grains to 2 so had passed what turned out to be my correct dose and then it was so easy to keep adding another quarter thinking I must feel better soon when I was actually making it worse!
You have nothing to loose by trying it as far as I can see. NDT improved my condition very rapidly like first positive effects happened in days. I felt my old self again within a few months so I think 17 months is giving it a good go. I have that DIO2 Gene making my conversion of T4 to T3 impaired but I do get some. I found out from my 23&me raw data. The test for it is very expensive. Did you get yours checked out? It might give clues to your best treatment options. I have considered adding a little T3 to my NDT as I have not felt as good as I did this last 8 months but it seems hard to find a reliable supplier.
I feel that I have given NDT a long trial with very little improvement in my health or functioning. I know that we are all different and it can be a slow process but tend to feel like I am in limbo! Do you think adding T3 to my NDT is an option? I had not really considered this.
I am aware of the DIO2 gene. I have not had the tests. From what I am aware I am a poor methylator, have low stomach acid and absorb nutrients poorly from food. I also have a history of over 10 years SSRI antidepressant use (undiagnosed hypo wrongly diagnosed as depression) which I have read can blunt thyroid receptors, which can make T3 the best treatment option.
I’m currently struggling to source my NDT (WP) and am running low which is another reason that prompted me to consider a trial of T3 at this point.
I hope that you start feeling as well as you did. Maybe when the snow clears and the spring sunshine arrives, you will get a boost. 🌈
Wishing you the best of luck with your treatment too 🍀🍀🍀
I am not at all knowledgeable about T3 only (like some here) but it was suggested I might try adding it to my NDT. I guess if I don’t convert T4 to T3 efficiently it could help give me the boost I might need but I have never tried it. I am not sure if it would be helpful in your case. I have never taken WPThyroid I would have liked to but it became impossible to get. I use ThyroidS. I think some people feel best on T3 only. I suppose you have to try and see what suits you best to know for sure and I hope you succeed in your quest ☘️🍀☘️
Hello Hypogo, may I ask you when you stopped the SSRI ?
I think that's your problem because your receptors are numb, you feel nothing (or little effect) although you are on the correct dose. In my case I took ssri about one year and recovery was difficult. I still struggle with the effects from cipralex (weight gain bcs.has dropped my fT4 & the small effect of t3 despite taking it). I think it takes a long time for the effect of ssri to go away.
I am still tapering from SSRI antidepressants due to the length of time that they were overprescribed to me. I have had several attempts to withdraw, with horrendous protracted withdrawal effects much more severe than my original (hypo induced) anxiety and depression on my previous attempt.
This withdrawal has taken over 3 years. I am down to 2mg - a very low dose. The slowness of my withdrawal is to minimise withdrawal effects and to allow the gentle upregulation and sensitisation of cell receptors that were destroyed by SSRI use as I slowly taper.
I empathise with your struggle with hypothyroidism post SSRI use. The effects of these drugs are often devastating and can be long lasting. In spite of this, they are overprescribed irresponsibly. SSRI’s have been clinically proven to induce hypothyroidism by disabling normal brain function.
The brain is very neuroplastic and has an amazing capacity to adapt and repair, so do not lose heart.
My research has informed me that T3 is a very good treatment for those with a history of SSRI use and blunted receptors. Maybe this is something that you could explore further?
I hope that you make improvements in your own thyroid health. I appreciate your input. Thank you adin🙂
If both your FT4 and FT3 are around mid-range, I doubt you have a conversion or rT3 problem. You either have an absorption problem, or you need an increase in dose.
Just posted and cancelled my post in one clumsy tap of the screen...I’ll try again!!
I definitely have absorption issues. I also feel that my thyroid receptors may have been blunted by long term SSRI use. Could you explain how RT3 or conversion does not apply to my case. I have never had RT3 testing and am just getting to grips with conversion and RT3. All I know is that the amount of hormone that I am taking is not converting to improved energy or health.
An increase may be worth considering, but after a 17 month trial of NDT I think it reasonable to see an increase in energy and health that does not cause me to be bedbound for the majority of the day in my early 40’s?
This diagnostic dance is not easy is it? I am similar to you with an ME diagnosis and same length of time on WP NDT, bedbased. My FT3 can be great on testing but my FT4 is low in range, TSH suppressed.
I had to do stool testing and investigate a fair few other systems to see what is stopping me now. I too am ridiculously sensitive to everything so have stuck to NDT as I react to all the fillers in T3 alone. I need vitamin injections as my gut absorption is still compromised and am undergoing testing for dysautonia, POTS and MCAS. I am sticking to NDT for now as I need a constant with other tests and medication trials. We are not as rare as they think. Good luck.
Thank you so much for taking the time to reply when you too are struggling, cwill.
A diagnostic dance is a very nice way to phrase this malarkey we have to endure 😉
Like you, I have multiple sensitivities and very low energy reserves that I feel have a mitochondrial component. I could easily fit in to the diagnostic categories that you are being tested for. I was hoping that NDT would result in some improvement with thyroid function, which would in turn help me to see what was what in terms of causes of my low energy and multiple other symptoms. Unfortunately that has not proven to be the case.
I understand you staying on NDT to have a baseline for testing. Being confined to bed is soul destroying and even if I can bring about a small improvement in my energy and health, it would have a huge impact on my level of functioning and quality of life.
I don’t know how I will respond to fillers in T3. If I decide that they have a chance of bringing even a small improvement in the short term, I think that I would be willing to take the risk.
There are many like us languishing and being failed by a broken system. I hope that your testing and perseverance results in improved health for you very soon. Take good care of yourself.
I've struggled so much to describe this state! You can't use bed bound, because doctors will get picky if you can get up to use the commode once or twice a day. Even house bound doesn't exactly fit, because I have been able to go to hospital even at my worst.
This is much more descriptive anyway and just perfect! I will start using it.
Recently I have crossed a line, and would no longer call myself bed based, as I am out of bed for half the day or even more. But the word actually helps me to clarify what the difference is, too
I'm not sure it's possible to blunt T3 receptors with anything. It's just that your FT3 is too low if it's only mid-range.
So, how does conversion and rT3 not apply in your case? Well, your FT4 is not high enough to convert to rT3, it would have to be up near the top of the range. In any case, there is no proof that rT3 does cause problems, because it doesn't stay in the system for more than a few hours. Although, it could be high if your ferritin is low. Have you had that tested?
It's difficult to judge conversion when you are taking T3 in anyway. You can only really tell when you're on T3 only. Do you have any results from being on T3 only? But, as I said, your FT4 isn't high, so nothing suggests a conversion problem.
I would therefore suggest you try either increasing your dose a tad. Or add in a little T3 to raise the FT3 without raising the FT4. If you manage to get your FT3 up nearer the top of the range, where most people need it to feel well, then maybe NDT doesn't suit you, and it might be an idea to try T3 only to see what that dose. But, if I were you, I'd persist with the NDT a little longer, at a higher dose.
I take apple cider vinegar and lemon juice water in water to increase / manage my low stomach acid. Especially before meals containing meat.
Log term SSRI use disables the function of the brain and down regulates receptor cells in the brain.
My ferritin is around 80 and I eat liver twice a week to maintain it.
It is helpful to know that my FreeT4 levels are not high enough to convert to T3. This makes perfect sense. Thank you for the explanation 🙂
I have never taken T3 alone so have no test results for this to use as a comparison.
Thank you for your advice on how to increase my freeT3. I am veering towards adding T3 for numerous reasons. I appreciate your thorough reply and input.
Log term SSRI use disables the function of the brain and down regulates receptor cells in the brain.
Do you mean cell receptors? If not, what are receptor cells? And if that is just in the brain, the rest of the body would not be affected. I'm afraid that doesn't make much sense as it stands.
It is helpful to know that my FreeT4 levels are not high enough to convert to T3.
rT3. Not high enough to convert to rT3. Hopefully it does convert to T3.
You can only really tell when you're on T3 only.
Sorry, my mistake! I should have said on T4 only. Do you have any results from being on T4 only?
SSRIs work by disrupting the normal functioning of the neurotransmitters in the brain. All of our physical and mental processes rely on the smooth and efficient transmission of neurotransmitter signals in between brain cells.
SSRIs down regulate receptor cells or cell receptors in the brain. SSRIs also dysregulate and disable the communication between the hypothalamus and pituitary gland. The pituitary gland gives the signals for the demand for thyroid hormone, cortisol and sex hormones. If this function is disabled by SSRI use it will impact upon signalling and processes which the normal functioning of these glands are dependent on.
I have several clinical research papers on SSRI use in relation to its impact on the treatment of hypothyroidism and the fact that they can induce hypothyroidism - I do not have them to hand but will try to locate them for you. The full scope of SSRI damage to the brain and body is not yet fully understood.
Reverse T3
I misread this - brain fog! Yes, this also makes sense.
T4
I have only ever been on NDT to date so do not have lab results for T4 monotherapy
Interesting. I would like to read the full papers. But, even so, they are not talking about T3 receptors, which is what we're interested in, here. Regardless of what caused your hypo, taking the right amount of thyroid hormone replacement should reduce or get rid of your hypo symptoms.
So, if you've never been on T4 only, we can have no real idea of your conversion capacity. But, it's not that important, because you are taking T3, anyway.
Thank you for taking the time to reply. I tend to agree at this point. Would you see any value in increasing my NDT before trialling T3? Could you briefly explain your understanding of conversion as this is something that I am just getting to grips with but not fully there yet. Thank you.
As TSH falls, conversion swings more in favor of rT3. It can only go to a certain point though.
Some people with really poor conversion have found that lowering NDT to less than 2 grains and adding T3 is helpful. I am currently taking 1.5 grains NDT and 50 mcg of T3. I am warm for the first time and have been able to lose some weight.
This sounds like an option that it worth considering that I was previously unaware of. Thank you for bringing it to my attention. How long have you tried this method and how long did it take for you to see any improvement? I’m so glad to hear that you have found a treatment combination that you are benefitting from 👍
I started on 2 grains of NDT in July after 6 years on levo, then levo and a small amount of T3. (TT in 2011)
After first blood tests on NDT my USA endo recommended 2.5 grains. Each time I tried to raise the NDT I got muscle pain. She refused to add T3 to NDT. So I obtained additional T3 from Mexico to experiment with adding T3 to my NDT. I started in November with 2 grains and worked my way up to 37.5 mcg of T3. I felt a little better but still unable to lose a pound no matter what. In February I went to 1.5 grains and 50 to 55 mcg T3. I have lost at least 6 lbs and like I said I am finally warm all over. So it really didn't take long to feel better. It took a while to figure out what dose would push things over the rT3 tipping point for me.
That is really helpful to know. Your experience reassured me that just because one type of treatment isn’t successful doesn’t mean that all will be the same. Even the same previously unsuccessful treatment (NDT) with a tweak of dosage and an additional component (T3) seems to have really provided you with thyroid treatment that has improved your metabolism in a relatively short space of time.
I am really happy that you found a treatment that supports your health. Long may it continue. 😀
Thank you for sharing your experience. I really appreciate it. It has provided me with another treatment option to consider that I was not previously aware of🙂
Make sure you click on the little word 'reply' under their post before you start writing. It is next to the thumb you can click to 'like' something (on my phone, anyway). A new text box will open for you to write in.
Hi Hypogo, 17 months is definitely a nice long trial. The one thing you mention that makes me think it might be worth persevering a little bit longer is that you havent taken freeT3 all the the way to the top of the range.
Mid-range is a fairly low freeT3, and it would be quite unusual to feel well with a freeT3 that low. Most people need it in the upper third, and some need it all the way to the top or slightly over.
Thank you SilverAvocado . This makes sense to me. I am not too worried about my T4 levels but had hoped to raise my T3 to top third of range. I have also read that over range is fine as long as there are no hyper symptoms and no negative impact on pulse rate. This is an important point that I need to consider. Thank you for highlighting it.
Yes, generally going over range is bad, but I think many people take it a tiny bit over. Coincidentally, I am taking mine quite far over, because I suspect I have some kind of thyroid hormone resistance.
I was still bed based when I got to the top of the range, but I'd had steps of improvement with every increase, so I felt like it was working.
Yes, you must monitor for over medicated /hyper symptoms if you go over range. I take my pulse and temperature first thing in the morning and last thing at night - there are other times to do it that are probably better, but that's what I started out with.
I found it took me quite a lot of increases to get from mid-range to top of the range. I've now been very slowly increasing for 28 months!
One thing I was wondering reading your original post - have you felt an improvement each time you've raised your dose? I always feel a slight improvement, even if it doesn't increase how much activity I can do very much. At this point I tend to notice quite a big jump.
For example before my Nov increase I was trying to manage 3000 steps a day on my Fitbit, and it was a huge slog. After the increase I could do that very easily, without even going for a walk. When I did go out specifically to walk, I doubled my old distance effortlessly. I've had another increase since then, but dislocated my knee over Xmas, so it's a bit harder to tell. But I've started sitting up downstairs for a lot of the day, instead of going straight back to bed after eating.
Hi again SilverAvocado 🙂 good to hear back from you!
I monitor my temperature (usually between 35.9 - 36.4); my pulse and blood pressure is currently the upper limit of normal; my blood sugar is usually below 4.5 fasting but can have some erratic spikes up to 10.1 after eating on rare occasions if I eat breakfast very early morning (5am). This suggests some degree of insulin resistance which is common with hypo. I also feel that I may have thyroid resistance.
I noticed improvement upon increasing initially, but no so much in the most recent increases that I can recall. I have had hypo symptoms for over 20 years, housebound for the last 7 before being diagnosed with “subclinical hypothyroidism” 2 years ago. My level of functioning has decreased over winter, but that is common. I usually do better in the spring and summer.
I’m so sorry to hear about your dislocated knee, you poor thing. I hope that it makes a full recovery very soon😘
Thanks Hypogo! The knee is finally on the mend, in the last stages of using a stick for a little limp. I always find the last phase of things the most frustrating - I want to get to the end and be better, but also looking forward to be walking a bit more over the Summer.
Let me see, I don't know much about most of the extra data you've mentioned, but I'll tell you all I know.
That is a very low temperature. I feel very sick if mine gets down below 36. This is a sign of being hypo, although apparently some people never fully heat up when they get on a good dose. I don't know much about having a high blood pressure, because mine has always been low. Although I'm surprised that even though mine is usually about 100/66 it sometimes jumps up well over what it should be for no real reason.
It's scarier to raise when these are already high. But also I think the pattern is more important than the absolute numbers. For example have your pulse and bp increased a lot as you've increased your dose to where you are, now? As I mentioned to Kell-E below, until I got to about the top of the freeT3 range my pulse went up with every dose increase, but now it drops with every increase. All kinds of heart problems can be caused by being undermedicated OR over medicated.
Hmm.... No improvement in symptoms as you've raised is also a bit harder to know what to do. I obsessively try to figure these out for myself and get as clear a record as I can, because I find it very difficult to judge whether symptoms have increased or decreased. But its absolutely the most important thing, because everything else can be ambiguous.
For me the last line in symptom recording is to take a piece of A4 paper, landscape. Make a column for each day of the week , and divide into rows for every hour you're usually awake, and one big row for night time. Then for the whole week mark down what you are doing for every hour. I found this actually a lot easier than it sounds, especially if most hours are just lying in bed! I made a few of these records when I was more ill and didn't know whether I was improving or not.
Or just write down everything you can think of on each dose, especially for activities that you do but struggle with. For me this has always been cooking. I went from doing the absolute minimum, feeling like I was running a marathon every moment of standing up, to coping but desperate to sit down as soon as I could. I'm now pretty comfortable, and easily do things like move to the bin or sink when I need to, or even do a little dance to the radio, although I'm a little lightheaded in the morning doing it.
Until quite recently all the gains were about basic self care, getting dressed, showering, etc. But the past two increases I can do most of those things fine, and the gains have been being able to do more leisure things like walk outside, blah blah blah. This is the kind of thing you want to pin down!
I was really confident advising you to try and get that freeT3 up until I heard you don't think symptoms have improved. Now I'm not so sure, it's a hard decision for you
I think I'd still lean towards trying an increase, because at least you will get that tick in the box of knowing you've tried NDT all the way to the maximum you're 'allowed'. Especially if your intention is to give up on NDT and try T3. I believe in being very scientific and systematic about it. Getting all the ticks is good, because then in the future while you're off trying T3, you'll know that you tried everything with NDT and you don't have to go back to it and try it again.
Even if you get to the point where you feel really over medicated/hypo and terrible, that's good too, because it's more information in the bank. As long as you are keeping good records of it all, including symptoms.
Whatever you decide to do, I think you should make a really good record of your symptoms and what you can and can't do right now. Because that will be invaluable to you if you get to a similar point with T3, and you're trying to figure out whether you were better off now, or better off where you are.
Sorry, this is a long one I hope there are some useful bits in there for you!
Just noticed your pulse and bp are at the upper end of normal, not actually high. If I where you that would make me willing to push things a bit more and hope that stay where they are!
I also didn't say anything about blood sugar because I don't know anything about it. I should learn, tho, because I keep hearing that sugar metabolism is at the heart of everything!
Just saw this now SilverAvocado Thank you for such a thorough reply!🙂
I agree that to get my free T3 in the upper third is essential. I’m not sure that it will happen on NDT alone with so little movement to date. I feel that I have been pretty patient with very little improvement to date.
I am sad to say that I am not managing my self care very well currently and have not been outside of my home for over a year. I have no leisure activities at all. Because of this, to give several months to an already poor acting treatment feels like it would delay my recovery further.
I am really hoping that I see some improvement in the coming months so that I can enjoy some of the good weather when it arrives and prevent any further deterioration. I feel very disconnected from the outside world and I am extremely isolated which impacts on my mood and well being.
A few more months trialling NDT on its own sounds brief, but it is a long time to be bedbound and deteriorate further with no guarantees, when other options are available to explore. I am very concerned about my lack of mobility and exercise which is damaging to overall health. I used to be very physically active until recent years.
I used to keep a daily symptom/ supplement/ activity / temp/ diary but as things plateaued I stopped as there were no patterns to observe. But I will resume this again when I start T3. Thank you for the reminder🙂
I think if there had been more progress in the past 17 months, I would be spurred on to continue with NDT. But as my health, level of functioning and quality of life stands, I feel more motivated by my gut instinct to try something new to prevent the loss of anymore time and any further deterioration. I hope that I have explained this in a way that makes sense?
Your input has been really helpful and I really appreciate it. I wish you continued improvement in your own health silveravocado 🙂
I agree with what you're saying, there are pragmatic reasons to change doses, too. Shooting for a lovely Summer is as good a reason as anything to try something new
I'm sorry to hear you are down to no leisure activities and struggling with self care It's a very hard place to be.
When I was bed bound I kind of thought 'fuck it' with regard to staying that way for a long time. I guess at that point I was very 50/50 about whether I would ever improve. Since I've finally started getting seriously improved with NDT I am now more like 80% belief things will improve further.
But I was quite lucky, in that NDT felt better the moment I tried it, and I'd already had a few years of very clear cut bad experiences with synthetics. It sounds like your time with NDT has been very underwhelming for a while, tho
If I were you I'd really like to see a freeT3 in the top third. But am I right in thinking you've had several increases without freeT3 raising at all? I get those sometimes, and my freeT3 has actually been 9.8 my last 5 increases (except for one when it jumped up to 11, but was back down again after next increase). High dose T3 is the most classic treatment for this kind of hormone resistance-y stuff.
I am unsure as to how my free T3 has changed as my gp has not monitored me as she should have and I am in the process of changing GP’s. I will aim for the top of the range with the addition of T3 and access regular blood tests to monitor progress.
It sounds like you are making progress and this is fuelling the expectation of further progress. Sometimes we just need that little spark of improvement that can be a game changer.
I will follow your progress with interest and wish you ongoing improvement in your thyroid / general health and well-being 😘
Thank you again for your advice and support. I appreciate it 👍
What you said about being over range is interesting. I have a new GP who believes in raising NDT in poor converters until they feel well. This often results in over range fT3, which has gotten him into hot water with an endo that has seen some of his patients. On my first visit I told him what I was doing with adding a considerable amount of T3 to a low amount of NDT and he was fine with that also.
I think what happens when you raise NDT is that you feel good for a bit. But the new dose usually results in a lower TSH, which skews conversion even more toward rT3. Then the gain you felt disappears. Until you reach the magic point where conversion cannot get any worse. Then when you increase, the gain should stay.
When I tried to ask my GP about this, he simply replied that he doesn't care how it works, he just knows it does. lol
Your GP sounds like a bit of a gem and one to hold onto!
I especially like his answer that he doesn't care how it works as long as it does
I'm following a similar approach. The old fashioned way to dose NDT, before the blood tests existed, was to just keep raising until you started feeling hyper and rubbish, and then drop back a bit and that's your dose!
It's a scary thing to do, and I'm only really willing to do it because I've been bed based on previous treatment. I'm now slowly starting to have times when I'm not orbiting the bed, so I'm feeling very optimistic at the moment.
I'm lucky in that I've never got to a point where I feel worse on a new dose. I've experienced a few things that kind of got worse and then got better. My pulse used to raise with every increase , till it got to a resting pulse of about 95bpm, but it now drops with every increase, and has just started dipping below 80 some days.
I haven't measured rT3 for some time, but have got a kit to do it again soon. When I was very ill and on a low dose it was high, but got comfortably into the normal range when I was on a higher dose. I'm, very curious about what it is right now. Hopefully it will be medium and that will be a big weight off my mind. Sounds like the latest thinking is that rT3 doesn't block T3, and no one really knows what it does!
Most of this I think Hypogo shouldn't worry about yet. I think the first thing to do is slowly push freeT3 all the way to the top. Even just to tick that box and be sure you've tried everything.
I think that I will try to increase my free T3 using a combination of NDT and T3. Then if I do have any absorption / conversion / resistance issues the addition of T3 should hopefully overcome this to a degree. Fingers crossed 🤞
Thank you everyone for your replies. I really appreciate them. I will update this thread when I add T3 to NDT to allow me to monitor and report progress that might help others.
You are welcome. I would just like to add a few things.
Regardless of the amount of T4 you have, some is always being converted to rT3. It is a matter of the ratio of T3/rT3 that your T4 is converting to. The ratio is what changes.
rT3 does have a short half-life, but it is also continuously being produced. Think about that, as far as it potentially being a problem goes.
As to whether rT3 causes a slowing of your metabolism...below is an exchange that occurred on a post by Diogenes (Dr. John Midgley).
Kell-E in reply to diogenes
a month ago
So then the statement this statement is attributable to Rudolf Hoermann? Is this his current thinking?
Reverse T3 is not an inactive metabolite as has long been thought, rather it acts as a T3 blocker. Our whole view on the non-classical hormones has dramatically changed in recent years and new roles are emerging (Hoermann et al. 2015).
diogenes
diogenesin reply to Kell-E
a month ago
Yes I think so, but exactly how rT3 interferes is still up in the air. It isn't at the receptor level so must be in the biochemistry of T4-T3 conversion somewhere.
My understanding was that T4 is converted to RT3. I just wasn’t clear if this only happens when T4 levels are high or if you were on T4 only monotherapy. Thank you for clarifying this. It is one area of hypothyroid function / management that I have not yet fully got to grips with, but it is becoming clearer.
Yes my T3 / RT3 ratio would be useful to see. The problem in the UK is most doctors rely on TSH only - which tells you nothing meaningful about the health of your thyroid, so a full picture is never explored. I think that I need to invest in private testing in the future if future requests for a full thyroid panel are ignored.
Yes, I see your point about the constant production of RT3 being problematic. This is something that I wasn’t aware of so thank you for pointing this out🙂
Your conversation with Diogenes is useful. Thank you for sharing it. I believe that a lot is not fully understood about thyroid function and treatment.
I have researched a lot of schools of thought on thyroid replacement. Many very rigid. Although most have merits, the unique biodiversity of individuals and gaps in understanding mean that one size does not fit all. Finding the right treatment for yourself is very much trial and error and a case of listening to your own body and adjusting treatment to optimise your own metabolism and level of functioning. I have found that this is more of a fine art than a case of following a standard algorithm.
Thank you so much again Kell-e. Your input has been invaluable in informing my next steps in treating my thyroid and recovering my health😘
Oh, and PS....I think you are definitely on the right track adding T3. You may also benefit from reducing NDT because of the T4 in it contributing to rT3.
Thank you. I don’t think that I made my intentions fully clear yesterday as I was so (gratefully) overwhelmed with so many replies and helpful information.
My plan was originally to continue NDT or T3 monotherapy. I feel that a good way forward after yesterday’s conversations / information would be to reduce my NDT to 1 grain and add in 5mcg of T3 in the am and 5mcg of T3 in the early afternoon to start. This will allow my body to adjust very gradually to T3, while still having the buffer of the 1 grain of NDT whilst I am increasing my T3 dose. I am aware that this is a much lower dose than I am currently taking, but if my body does not process T4 very effectively, for whatever reason, it may mean that I end up on a much lower dose of mainly T3. How does this sound?
I was considering a weekly increase of 5mcg - slow but steady until I reach a total T3 therapeutic dose of 50mcg. Then holding for a while. Does this increase rate sound feasible?
I will be keeping a diary from the start of me taking T3 to monitor changes in metabolism, mood, temperature, pulse, blood pressure and decreased or new symptoms.
Did you have any unpleasant effects upon starting T3 that I should be aware of, Kell-E? Also, because T3 is absorbed directly, does it have more impact on under functioning adrenals or would a slow increase in dose counteract any additional adrenal stress?
Thank you so much for sharing your experiences and support. I am hopeful about my treatment strategy for the first time in over a year.
One thing to keep in mind is that you have already been on a fair amount of T3. NDT contains 9mcg if T3 per grain. So you have been taking 31.5 grains of T3 already. Granted I think the absorption is a little different as the T4 and T3 in NDT is bound to proteins. But no, I did not experience any negative effects from adding T3. And I do believe that I had an early stage of adrenal fatigue also.
Going from 3.5 grains to 1 grain is a drop of 22.5 mcg of T3. It will take 4 or 5 weeks for the T4 from the 3.5 grains of NDT to drop down to the level you will be at on 1 grain. So initially you will still likely have an abundance of rT3 being produced. If you start with only 10mcg and 1 grain you TSH will rise and your body will produce some of its own T4.
I guess what I am trying to say is that I would start with more T3 initially, because your body is already used to it. That's just a thought though. It is very difficult to guess exactly how it will all play out. But I would guess that you would feel quite hypo for a few weeks if you start with 10mcg T3.
Thank you so much for this explanation!! This makes perfect sense. So if I started on a T3 dose closer to / the same as what I would have already been taking as part of NDT, this will have no ill effects in theory and will minimise hypo symptoms during the transition.
I am not starting T3 from scratch, so do not need to start at a lower level than what I was already taking as this could cause more problems in terms of RT3 and hypo symptoms. Have I understood this correctly?
Also, If I did ever take too much T3 and experienced hyper symptoms or adverse effects, because the clearance time / half life of T3 is so short, this can be adjusted by altering my next dose. Then any unwanted effects or hyper symptoms should diminish within hours rather than weeks when taking NDT?
As well as thyroid levels/medication adrenals, I can highly recommend the Hilary Newman clinic in Gloucester as functional medicine, it has made a big difference to my health after 9 years.
Just saw this, reallyfedup. My notifications aren’t coming through as normal. Thank you for taking the time to get back to me.
All of my vitamin ranges are where they need to be to allow the conversion of T4 to T3.
I have been hypo for 20 years (only diagnosed 2 years ago). I was overprescribed SSRI’s for over 10 years - currently tapering and down to 2mg a very low dose, but feel SSRI’s have blunted my receptors.
I don’t use anything with aluminium in it. I use glassware or stainless steel for cooking.
I have been GF and DF for 2 years.
I have symptoms of low cortisol- will be testing as funds allow with a saliva test and writing to my GP to rule out Addisons or secondary adrenal insufficiency.
I agree. I thought that I would have seen much more improvement on NDT over the period that I have taken it. Thank you again for your thorough reply.
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I hope there are some useful bits in there for you! 
Please recommend whether I should try T3 or NDT first, according to these blood test results -
Thinking of switching NDT to T3 - conversion help, please :)
Should I try going on just T3
Should I reduce T4 or T3 
Advice on latest results please - what should I do next?
