Can anyone advise how I go about rejecting Levo. I saw a highly regarded holistic endo and he sent me for countless blood tests, ultrasound, adrenal, GI effects (stool) tests. I was so hopeful and made clear my views on NDT during the initial consultation in case he felt I needed to start on Levo following the test results.
So yesterday was my follow up ( a month later) and I was diagnosed with Hashimoto’s which I suspected thanks to the knowledge that can be picked up on this forum. He advised me to start a Keto diet to help with my body’s reliance on glucose (I get terrible sugar lows however am not diabetic). And he feels this can help the severe brain fog, confusion and fatigue greatly as well as the weight loss. Also checked all my vitamin and mineral levels and recommended supplements.
He then went on to discuss starting me on Levo 50mg. I said I’m not happy about taking synthetic drugs as have been pharmaceutical free for over 3.5 years and would be happier on NDT. He expressed his concerns on him not feeling responsible as I may not need the T3 that comes with NDT at this initial stage but suggested if I would be open to taking compounded Levo which doesn’t have all the fillers. I felt I had no choice at that point!
I am awaiting the private prescription for the compounded Levo but feel I need to discuss with him further re NDT. I have read he has done great things for his patients but maybe those patients are happy taking pharmaceuticals. Really unsure how to approach this subject as I fear he may be correct and that I may not need the T3.
My results are below in the letter he sent to my GP...
Thyroid. Her TPO antibody was 320, thyroglobulin antibody 53, TSH 16.3 miu/L, fT4 10.6 pmol/L, fT3 4.7 pmol/L. Thus, she has overt primary hypothyroidism as her fT4 is low and her TSH is elevated. The cause is autoimmune/Hashimoto’s thyroiditis in nature. I have recommended she start Levo-Thyroxine 50mcg once daily. She has previously had significant reactions to pharmacological agents and is keen to try and avoid as much as possible synthetic drugs.
As a compromise therefore I have recommended a compounding pharmacy help to make up the Levo-Thyroxine. There are preparations available on the market that have minimal fillers that we could also consider including on the continent, the Gel preparations. Thyroid ultrasound scan did not show any pathological cervical lymph nodes, the salivary glands were normal, and the thyroid gland measured 1 x 1 x 3cm in the left lobe and 1.5 x 1.3 x 3.1cm in the right lobe. There was a coarse heterogeneous hypo echoic echo texture with normal thyroid vascularity. The findings were consistent with Hashimoto’s thyroiditis.
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HashiDaz
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Does he actually know that the healthy thyroid produces both T4 and T3? You may not have a desperate need for it, like some people that are poor converters - although it's too soon to know about that, yet - but it won't do you any harm. People were taking NDT long, long before levo was invented. I would have serious doubts about this endo.
That’s exactly what I wanted to say in the appt however couldn’t bring out the words. Feel disappointed I didn’t put my foot down then so am thinking of emailing him.
I guess all my supplements are full of fillers too. I just have this anxiety with the Big Pharma and their agendas.
I am with the endo on this as NDT can apparently increase antibodies. NDT apparently really good food for anything that want to attack thyroid tissue. So I have heard, not seen any studies to back. I take NDT myself but I do not have hashis. Levo can work miracles I know a couple of people who are great on it. It is a pharmaceutical and does not work for everyone but it is cheap and easy to access. It is not like many pharmaceuticals doing something very unnatural to your body and I dont think depletes vitamin and minerals in the same way a lot of them do, it is a bioidentical hormone replacement. If levo does work for you then with this endos support you should be able to get it via your GP which would be so much cheaper than continual private scrips for often over £100 for NDT or sourcing it from America as I do. Every body needs some T3 but I think the endo is saying that you probably dont need T3 replacement.
That is kinda what he said as my antibodies are off sync. But with being overly sensitive recently I was upset by the NDT rejection. I am in two minds about just getting the GP to give me the normal Levo as essentially like someone above mentioned fillers are in everything and even in the supplements I already take.
Please try the Levo first. It is so easy to take and increase. If it works for you it will be easy and you will feel great. If it doesn't work well for you, you can change later. NDT is not a miracle cure for everyone and getting a body used to external T3 can be difficult and unpleasant.
Thank you I think I will now at least to begin with and to keep the endo happy as I do feel he has done the full MOT with tests and working to optimise everything else
I agree FancyP, it’s taken me six months experimenting and getting advice here to get a balance of T3 and levo that works for me and still not quite there. If I could get symptom free on levo only it would be some much easier. Definitely not convinced that NDT or T3 should be the first step of treatments. My sister and sister in law both on levo only and do way better than me...I envy them.
I strongly agree with FancyPants54, NDT can be great for some people (like me), but it's not a miracle that works for everyone. Some regulars on the forum hated it. I tried NDT after I had been on Synthetics for two years, it's now 3.5 years later and I am still adjusting to get to my right dose. I've been adding synthetic T3 for the past year, so it's also not a case of avoiding synthetics, but of finding the combination that will get me well.
This is a long long road to find the combination that works best for yourself. Personally I like to be as systematic and logical as possible in trying out doses, and Levothyroxine is a very logical place to start, because something like 80% of people do well on it, and if you don't it gives you a straightforward base to go on and try the next thing.
I am cross by the way that you had to pay this man to get a diagnoses. What is the matter with your GP? Those bloods are totally unambiguously hypo.
My GP only tested TSH and T4 and suggested I go on Levo however I was insistent on seeing an Endo as my private medical covers it and thought I would find an endo that looks into testing the antibodies etc to rule out Hashimotos and anything else. Don’t get me wrong he has gone beyond many endo’s I’ve read about with the testing adrenals, guts issues, PCOS, nutrient deficiencies etc as I have many symptoms which have flared up so bad the past year. He did all those tests to rule out anything thing else I might have going on that may be affecting the thyroid and to bring those issues in balance.
I'm sorry, I can't really offer anything constructive as I'm too new to this, but is it ok if I message you as I would be interested in the name oftheendo you saw please? I do understand your reluctance though and I am going to go through the same dilemma if prescribed.
The problem with NDT alone is that it's pig hormone, not natural for humans. The ratio of T4 to T3 in NDT is 4:1. Humans it's 14:1. If you take NDT alone, you will be hormonally off. You need to use a combo.
You don't experience thyroid hormone overdose that way when you older 50+. There's no rocketing, but there are a bunch of things that start to go wrong. Sleep gets difficult. For me, the worst was when my knees started to collapse. They lost their strength. I became emotionally reactive. I became exhausted. My temperature went down, My pulse was 60, my blood pressure very variable. I had heart palpitations.
Knowing something was wrong, I started to figure out what was wrong (I've been through this process many times) and lowered the dose.
I went from 2 grains NDT to 1 grain NDT and 100MG of T4. That dose had me rocketing. But what was weird was my TSH was low, my T4 was low, and my T3 was high. My doctor said YOU ARE TAKING TOO MUCH. It was weird because my blood pressure was fine, my pulse around 60, I felt calm. So I went online and searched: "What would cause low T4, High T3, low TSH. That's when I came across an article about the curious state of the coexistence of a hyper and hypo thyroid state.
By reading, I've learned thatu European doctors have known for years that people trying to replace a non-working thyroid has to take T4 and T3 in the right ratio. They have known for years that you can't rely on dosing T4 only or NDT only.
So with this new information, I've been trying to get the ratio right on my replacement hormone and feel good at the same time. My dose went from 2 grains NDT to 1 grain NDT plus 50mg of T4 (14:1 ratio). I came to these numbers by slowly bracketing my dose. I feel good. I can sleep. Palpitations are gone. I feel good.
My next step is to retest with my doctor. It'll be interesting to see what the blood test says in relation to how I feel. I'm so happy I can sleep again. And it doesn't have to be NDT.
Very interesting Teras, what are your thoughts upon the link between your knee problem and your medication? I ask because in the past 6 months I have experienced knee problems and wondered if this is the bone problem they attribute to persistent low TSH. Yes I know they say osteoporosis(sp.?) but I do not have that, I do however have lack of cartilage in my knees.
Teras, I feel I have to explain something here. It is about ratios. When you speak of the ratio of 14:1 you are using the Total T4 (TT4) to Total T3 (TT3) "ratio". This is not strictly a ratio because the TT4 is measured in mcg/dL and TT3 is measured in ng/dL. Ratios must have no units i.e. same units top and bottom.
The ratios you should be using are the 4:1 or 3:1, these are the FreeT4 (FT4) to Free T3 (FT3) human and pig ratios respectively, (they both work - I run on 3:1). This ratio has no units because FT4 is measured in ng/mL and FT3 is measured in pg/mL and the ng/mL is converted to pg/mL (by multiplying by 10) before the ratio is calculated. (or of course you could convert the pg/mL to ng/mL if you prefer - whichever way you do it the units must end up the same before you divide to get the (true) ratio)
I thought it was important to bring this to your attention since you might want to reconsider your doses. Oh, and you are not taking mg's of anything, you are taking mcg's.
HashiDaz, I think this can be a common story with private and functional doctors. A lot of doctors talk very well in the first session, I've found, show good understanding and send out for very nice sounding tests. But then once the test results come back a lot of them don't deliver on their earlier promise. I think it's just a lot more difficult to analyse a lot of complex tests and symptoms than it is to develop a very good spiel you can use on most people who come through the door. And of course they've got all the money from the testing in their pocket at that point
I've also encountered a doctor who implied they would put me on NDT and my friend on T3, but months down the line I had to really put my foot down and ask if he'd every deliver the NDT, he finally said no.
My friend and I both self buy and self medicate what we need, now.
This is probably the number one reason not to start on NDT. If you're in the UK it means buying your own and self treating. Or paying an extraordinarily expensive Endo for the rest of your life. If you're in the US you might find an Endo who will prescribe it long term.
NDT, I'd say, is the 2nd best thing to start on after Levo. In some ways I was too harsh above saying it's not a good start. Its the traditional way to start, and if you're super lucky and do well on the first thing you try and get to your optimal dose easily then you'll be in good shape. But if you're not as lucky, and you end up hypothetically needing something like T3-only to feel well, then you'll have a longer and rougher journey to find that out.
Another side of it is that to self medicate NDT you'll probably spend 3 months or so researching before you're able to even take one tablet. Whereas Levo will be overseen by your doctor, so you can follow their instructions and study your illness yourself at the same time. If you're one of the very lucky ones you'll be entirely better on Levo in 3 months. If you're only kind of lucky you'll be halfway to getting better in that time. If you're not lucky enough to get on with Levo, you'll have several months of data to inform where you go next.
Thank you Silver Avo. After lots of advice I think I will go on standard NHS supplied Levo and see how I get on. I think I will leave the compounded Levo for now as all the supplements I take are full of fillers and don’t seem to have affected me adversely over the past decade. Not sure why the endo put on his letter that I have reacted to fillers in the past which is NOT what I said. I specifically said I don’t want to take anything synthetic. BUT then again all these supplements are synthetic. I just have this negative attitude to Big Pharma and believe that pharmaceuticals have long term side effects and can trigger other serious conditions but that may not be the case with Levo unless someone can enlighten me.
I think others have mentioned, thyroid hormone replacement is a bit different from a medication. It's replacing something your own body would have made by itself if things were working well, not introducing a new chemical that is supposed to tweak and change things. This means it doesn't exactly have side effects.
People do sometimes have reactions to fillers, or find that the formula of one brand suits them a lot better than others. And of course being hypo itself can cause other illnesses and come out in lots of strange ways.
If you have any problems with Levo, or you need to interpret blood tests, this forum will be here for you. I actually advise anyone who takes these things to stick around the forum and learn how to read their own blood tests and confirm their dose is optimal. Doctors will often not do the best job.
You will start out on 50mcg, but will likely end up needing a higher dose. Stick on this for 6 weeks, get a blood test and adjust by 25mcg, stick for 6 weeks again, etc, until your blood tests look good or symptoms have resolved. It can easily take 6 months to get your dose optimal even if you have a very smooth run.
If you are going to go on standard Levo from the NHS make sure you get plenty of Selenium. The conversion of T4 to T3 needs Selenium as its catalyst, i.e. makes the reaction happen. If you don't want to take pills (because of fillers) then eat just two Brazil nuts per day (that's what I do). T4 and T3 are called selenoenzymes. An Enzyme is a biological catalyst and the chemical it wants in order to do it's job is Selenium.
Oh, and you might want to maximize your vitamins D, B12, Folate and Ferritin. There are ways to get these via food (since you do not want to take pills), look it up on Google (e.g. what foods contain vitamin B12 etc).
I think many non converters could become adequate converters if they were to maximize these vitamins, minerals and (Quasi) metals.
HashiDaz, I've just seen that your question was more about whether you can find an Endo to prescribe NDT. In the UK prescriptions for NDT are extremely hard to get. On the NHS probably a handful of people in the country are getting it.
Privately, its a bit more possible. I think any Endo who accepts insurance will usually be as conventional as an NHS doctor, and they tend to believe NDT is unreliable and useless. You might find the 1 in a 1000 who prescribes it. ThyroidUK maintains a list of doctors that members have had good experiences with, but even those can be hit and miss. My doctor who refused NDT came from the list, and so did another doctor I felt was just stringing me along for the money. Neither of those would accept insurance. But I know a handful of people on the forum have had NDT prescribed by local Endos.
Unfortunately I think you're actually asking an even more difficult question than just whether it can be got on prescription. You're asking can it be got on prescription *without* having tried Levo first. And actually I think that probably is close to impossible. You'd have to travel abroad to see one of the small number of doctors in the world who primarily work with NDT. All doctors you see will say the same as the two you've already seen - start on 50mcg of Levo. Doctors tend to want us to jump thru hoops to get the more complex treatments. First they send you off with the simplest treatment that works for the most people, then you show that you've tried that out fully and are still sick, and at that point you may be eligible for the next treatment down the road. For an NHS GP there won't be any next treatment. For a very good Endo there will be T3 to try, and for the 1 in 1000 private Endo they might try T3 and after that be willing to prescribe NDT.
The way it works in real terms is that 50mcg of Levo actually is the first step to getting onto NDT. I think most patients would agree with that as well as most doctors.
My experience reflects very much what silveravocado has detailed. I began taking levothyroxine in 2014, but I continue to have ‘flare ups’ which are completely debilitating while they last. I’ve been trying to get NDT on private prescription - not succeeded yet, but my GP has said she will happily write a private repeat prescriptions once I’ve had my first. She’s NHS and I think the charge for writing a private prescription is £20. It may be an option to explore at a later stage.
Thanks so much. To everyone that has commented thank you ever so much. I really appreciate it and being on this forum has brought me out of the slight depression I was in. I’m very thankful.
A couple of questions come to mind that he may have difficulty answering:
Different branches of the NHS claim that NDT, Liothyronine AND Levothyroxine (reported to me by the MHRA) have not been subjected to adequate testing to warrant their licensing in the UK. NDT, and Liothyronine (in some CCG's), are both blacklisted, so why is Levothyroxine greenlisted? Please produce the evidence!
Liothyronine is synthetic, Triidothyronine (as produced by the thyroid gland) is natural. The synthetic version of T3 is absorbed quickly by the human body, it is made out that the natural T3 acts in the same manner. BUT THEY ARE DIFFERENT CHEMICALS AND ARE PRESENTED TO THE BODY IN A TOTALLY DIFFERENT MANNER!!! So, where exactly has it been proven that they will act exactly the same, please produce the evidence. If a patient were to state that silk and nylon are exactly the same, they would be sent to see a psychiatrist.
T3 meds are black listed because the manufacturer decided to raise the price and the NHS responded by not prescribing it, if memory serves. That’s what, in effect, my endo said. I remember it made the BBC news when the price rose.
He’s also against NDT, which he stopped me accessing on the NHS about 6 yrs ago, because he said the ratio of T4 to T3 was not what a human naturally produces, but instead ndt provides way too much T3.
Thinking about fillers, Levo pills are way smaller than the equivalent dose tablets of NDT, so whatever you’re getting in fillers, you are getting less with the synthetic.
On another front, I read of people getting off their thyroid meds by gradually introducing all a body needs to make their own. I have an atrophied thyroid after years of supplementation, but I tried just taking tyrosine, and sure enough, my T4 levels climbed. I’m in the process of seeing whether they fall again now I’ve stopped the supplement, and I’ll get myself retested. I shall then consider which will be easier to guarantee a supply of, thyroid meds or tyrosine!
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