Hi. Thank you firstly for looking at my post. I am 11 weeks post thyroidectomy and have been on levothyroxine since my surgery. I weigh 90kgs.
From week 1 to week 4 I took 150mcgs of levothyroxine and my bloods were
TSH <0.001 range 0.40-4.0
T4 18.9 range 10-22
T3 2.9 range 2.5-6.0
From week 4 to week 10 I took 175mcgs of levothyroxine and my bloods were
TSH <0.01 range 0.40-4.0
T4 16.9 range 10-22
T3 2.8 range 2.5-6.0
My gp wrote to my Endo at my request asking about NDT as my preferred treatment option. The Endo wrote back to the gp saying she has never prescribed NDT ever to any of her patients. My gp has admitted he has no patients on NDT and that I am his only patient who has severe Graves’ disease for 30 months before surgery. Both the Endo and the gp have suggested a straight swap over from levothyroxine to NDT (I hear you in the uk with your sigh from NZ). Both the Endo and the gp have said if the 90mgs of NDT do not alleviate my symptoms then they will not be considering a dose change but instead will be looking at psychological issues next. I have ptsd from drs who told me my children were fine when in actual fact they were both incredibly ill.
My question is about transitioning from 175mcgs of levothyroxine to 90mgs of NDT. My prescription for NDT is for 90 days worth of medication. I have 90 x 50mcgs of levothyroxine tablets left and no further prescriptions for levothyroxine so that’s it. Currently I am having extreme fatigue and sleeping 10-12 hours a day.
I have been told to do bloods in 8 weeks. I am taking b12, iron, folate, selenium and vitamin c plus an adrenal support. No blood tests will be offered for vitamins.
I was told very clearly that the Endo and my gp do not support this treatment option and I had to sign a waiver for the NDT.
What is worth noting is my gp and Endo went back through my medical history to 2010 and found thyroid blood levels at
TSH 1.30 range 0.40-4.0
T4 16 range 10-22
T3 3.1 range 2.5-6.0
So on this evidence they said that my blood levels today are a good reflection of how I was before Graves’ disease and they believe I am where my body would naturally fall.
In 2010 I was a Les mills fitness instructor teaching 6 classes a week and doing 6 further classes for myself as well as lifting weights. That’s where I was in 2010.
In 2014 my TSH was 4.0 range 0.4-4.0. My nails had all fallen out and I was diagnosed with chronic fatigue syndrome. I was declined to be seen my the Endo at the hospital and didn’t go to the gym any longer. I was pretty much bedridden and told I had depression. This experience is not acknowledged today as being a thyroid issues though I believe it was the start point for Graves’ disease. Because in 2014 I was bedridden. In 2014 my son tore his hip at 16 years of age and declined surgery in 2016 so o fought for him to get surgery. And also in 2015/2016 my daughter had a sore elbow as was dismissed as an attention seeking sister to a sick brother and put through a pain clinic but she actually had a benign bone tumour called an Osteoid oesteoma. So I was pushing for 2 children to get surgery. In mid 2017 the children got surgery. December 2017 I was in a major car accident. In mid June 2018 my daughter got sick again and again we pushed for answers and by Jan 2019 she had 2 more bone tumours. Sept 2019 my father in law died and my husband returned to the uk twice in 4 week intervals and in March 2020 my husband lost his job in the first wave of covid and in May 2020 I was diagnosed with graves.
Thank you.
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NIKEGIRL
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Hmm. Going to write and think out loud as I write.
90mg of NDT is 38+19=57mcg T4
and 9+4.5mcg=13.5mcg T3
If T3 is 3 to 4 times more potent than T4 (yes, I know that’s not exactly true, it’s just how it’s worked out) that’s equivalent to 40-54mcg of T4
So 90mg of NDT at best is only equivalent to 111mcg of levothyroxine.
Not exactly a like for like replacement for 175mcg levothyroxine, is it? How very unhelpful of them to insist they won’t go above 90mg of NDT. Especially as you’re now thyroidless!
However—you might feel quite a lot better on it than you do on levothyroxine. Let’s hope for that.
I think if it were me, I’d try reducing my Levothyroxine dose at the same time as adding 30mg of NDT.
So maybe reducing by 50mcg to 125mcg and adding the 30mg. Take that for an about a fortnight, see how it goes then reduce the levo by another 50mcg to 75mcg and add another 30mg NDT. Stick on 75mcg and 60mg for another couple of weeks, see how it goes, then finally, drop all levo and raise to the 90mg NDT.
But I can’t help thinking you might need more than 90mg. Maybe when they see your bloods on 90mg they’ll see that an increase would be absolutely fine…
I would never have been able to work that out. I just don’t have enough experience. However I will keep a photo of this conversion. Because u can’t argue the numbers. I am limited as I have only 90 x 50mcgs of levothyroxine left but going by your conversion 90 tablets is enough. And possibly enough to do 50mcgs of levothyroxine and 90mgs of NDT long term if I felt ok. The plan, (right now there is no set logical plan) is to drop levothyroxine while incorporating NDT.
What needs to be remembered (politely) is that RIGHT NOW the drs believe my blood levels are right for me (right now with t4 at 18.9 and t3 at 2.9 irrespective of ranges) based on historical data back to 2010 and that data shows me at the bottom of the ranges rather than the top. This is their belief.
I do believe I have been set up to fail somewhat and I do believe I have been sent on my way to “get on with it”.
I want to say thank you for this message. It has been very helpful.
You can't compare the T4 content of levothyroxine and NDT because levothyroxine absorption is around 50%. The manufacturers say 1 grain of NDT is equal to 100 mcg levothyroxine. I don't know how they work this out, the best way would be to match the doses to a given TSH level in patients with a non-suppressed TSH.
I know you can’t—it’s not quite a simple as that. But my personal experience is that one grain isn’t equivalent to 100mcg levothyroxine at all. More like 75mcg perhaps.
That sounds reasonable. I don't know how they arrive at the equivalence. The best available marker (not good but the only one easily available) is to compare the effects on TSH, I'm not aware of any studies though.
For reference, I'm 47 kg and I was on 75mcg of T4 most of my life. My free t3 was low and my free t4 was at the end of the range.
On Erfa (NDT) I eventually needing to be on 150 mcg of NDT split up throughout the day and night. I still take a measly amount of additional t4 at 6.25 mcg and also 1 Thyroid glandular from Ancestral Supplements.
It took me about 10-11 months to make the final switch over and to get optimal. I slowly reduced my t4 and increased my ndt.
If interested, I can look to see how I made the changes. My free t3 was below range when I started and when I last tested it was slightly above. It took 20 plus yrs to raise my free t3. It's now improved, thanks and praise be to God
You have the NDT which is your chosen med so think positive and make a plan to try getting it performing well for you.
Some NDT’s come in 60mg per grain and others in 65mg, so 90 mg is roughly equivalent to 1.5 grains. NDT hormones are bound to the thyroglobulin (protein) and it is claimed hormones are not released until digestion making it a much smoother ride. This is my own experience.
Manufacturers claim 1 grain is biologically equivalent to 100mcg T4, although I would claim it’s about 85mcg T4, meaning 1.5 grains is equivalent to 127.5mcg. Because of the way adding a T3 med ramps up deoxidise (enzyme) actions, we sometimes need a little less meds than if we were on synthetic, although this is also determined by state of thyroid gland, conversion abilities, cellular sensitivity, etc. I too am thyroid-less but this has been my experience.
Your medics lack of NDT prescribing means they lack experience regarding the necessary slow introduction of any T3 med. Jazz’s switch over plan is good and if any changes were to be made it would be to go slower and not quicker.
Be aware adding T3 meds appears to help many and it certainly helped my own physical issues and cleared a foggy brain almost immediately but it also unsettled my mental health until sex hormones were also replaced about a year later. You are a lot younger than I so hopefully this won’t be your experience but given your previous difficulties with mental health I thought it important to mention.
Apart from Graves, has removing your thyroid gland lessened any other auto immune problems? Some find NDT may reignite a high autoimmune status and it’s thought possibly molecular mimicry is at play much like the gluten scenario. Because you don’t have a thyroid gland, hopefully this won’t be applicable and it wasn't for myself.
Your body and mind has been through a huge amount of trauma in recent years so it could take a good while for thyroid hormones to optimise in not only their levels but how they work. NDT is not a panacea and still requires respect and looking after with optimised iron, nutrients and healthy living/diet. I like adding a mitochondrial support and given you love intense exercise you too might find this beneficial.
Do not crank hormones high just to ‘fill’ the range because you chance missing your sweet spot, and I believe suffering mental health issues we are more sensitive to T3 dose changes and over medication. If you regard your previous Levo dose you can see between weeks 4 - 10 FT4 levels didn't rise but actually dropped in spite of an extra 25mcg Levo increase and this could be because exceeding your sweet spot means your body converts to inactive metabolites (most likely RT3 in this case). FT3 also dropped indicating you are a poor converter and the more Levo you medicate the poorer your conversion becomes. This phenomenon is common and why more is not always better.
However, it may be you do need a little more meds than the prescribed 90mg but not necessarily extra NDT. I top my own dose of Armour up with Levo to raise T4 levels as the small amount of NDT T3 has increased my conversion ability. I also function best on hormones half to two thirds of the way through range.
Here in the UK we can buy both Levo and T3 (containing) meds from abroad to import for personal use. Is this an option for you should it prove necessary?
Can you get frequent bloods as they might give you confidence things are heading in the right direction?
sorry for jumping in…. But this alarmed me, as I take ndt and have autoimmune issues. Where can I find more info on this please. “Some find NDT may reignite a high autoimmune status and it’s thought possibly molecular mimicry is at play much like the gluten scenario”
I think it was Datis Kharriazian but I’ll have to look.
It's usually only apparent when first introducing NDT evidenced by hypo symptoms and autoimmune issues worsening the higher you dose, and labs evidencing higher levels of thyroid antibodies.
The O/P is thyroidless but there is a known occurrence when even after removal of the gland, antibodies can remain elevated with just a few tiny remaining cells. I have read people taking LDN helps initiate a better NDT response as reduces the elevated thyroid antibodies that are causing problems.
not intolerant as such but my other autoimmune issues are getting worse. Is this just thyroid antibodies? I have autoimmune issues in lungs, sinus, liver. Whereas my thyroid antibodies have dropped a fair bit.
It doesn't sound like a meds problem but more a rampant autoimmune system out of control. If we don't calm the responses, it can ramp up creating further autoimmune conditions. I have written about autoimmunity a lot on the forum but can only locate this old post ... (about half way down).
For further info read anything by Datis kharrizian and/or Isabella Wentz.
Regarding the NDT, the article is titled something sensational like NDT ignites the Hashi autoimmunity driving thyroid antibodies ever higher! and the thought is the body sees the proteins in NDT as similar to thyroglobulin and attacks it (I think!). Others may comment on this ......
Another thought (by Eric Balcavage) it that any added thyroid hormone can drive any autoimmune response as well as the healing ones. If the immune system is disregulating to the extent of driving weird symtoms and other progressive conditions, then adding a med that will increase metabolism can also drive those unwanted pathways as well as the healing.
thank you for your message. I have been prescribed whole thyroid extract. No brand was specified but I have looked at the official information act here and I think I will receive Armour. I went to the pharmacy today to see if they had received the quote for the NDT. They have not. The NDT is being made in the north island of New Zealand and speaking to the pharmacy today the NDT will not be with me for another 14 days plus delivery. So for now I am on 175mcgs of levothyroxine and have been for 7 weeks now. My biggest physical symptom is extreme fatigue and I am tired. I am sleeping 10-12 hours a day. If that symptom was removed I could cope with life a lot better.
I am tired of being told I am not a positive person. When I agreed to go to surgery I hoped for rainbows 🌈 and unicorns 🦄 post surgery. I genuinely went in to surgery thinking, right this is me, I will do the surgery and the worst will be over. My dr told me that I should not have hoped for rainbows and unicorns. That was too optimistic. So I left that drs appt totally deflated. Two things the Dr said that day rendered me speechless. 1.). I was to optimistic about surgery and 2.). I was in the ranges. The dr took my last bit of hope there and then. My dr always said he would treat me based on symptoms. And now he is saying well u had these symptoms before the surgery so we are now looking at your psychological state as the reason u r not feeling well. I cannot tell you how awful that made me feel. And to be told that we r giving you NDT 90mgs and if u don’t feel well then it’s more than likely psychological. I was speechless and to be honest for the last few days I have felt like shit as a human being.
I am 50. My dr told me there are to be no blood tests for the next 8 weeks. The dr and Endo do not believe I am a poor converter and I was told that my levels of conversion are robust. This is the exact words out of his mouth and from the correspondence from the endo to the gp. The drs believe levothyroxine is the correct drug for me and made me sign a waiver of their responsibilities for me taking the NDT and for me to acknowledge that I am going against their advice.
There is no prescription coming for more levothyroxine or for more NDT. This is it.
I do not know if NZ customs will allow NDT into the country. Our customs are very tight here.
Hi nikegirl. try not to get ahead of your self, you are here / now .. not in the future , so stop projecting into it , you don't know how NDT will be , you've not had it yet.
just cos they are out of their depth with NDT~ you , and we, are not ~ you've got NDT coming , that's a win .
See how it goes for starters , and we'll all figure it out together .
They are insecure and scared about prescribing NDT ( hence their current un-educated ridiculous/ overly firm 'this much and no more' stance on it) , but hopefully their confidence will improve and their fears lessen, once they see you didn't grow two heads when you take it.
They will always prescribe you some sort of thyroid hormone , and if it turns out you have to add something to that prescription that you self source to feel best , then you will figure out a way to get it.
Park the feelings that came up from this latest Dr's conversation in a box where they belong . and close it .
They obviously don't know what they are talking about when it comes to NDT , (by their own admission) . so don't let the pronouncements of a bunch of amateurs colour how you feel about yourself and your mental health/ strength.
If they don't understand thyroid hormones 'in general' very well , then it's safe to assume they don't understand YOUR thyroid hormones , (or your mental health) very well either.
One step at a time.
get the NDT ...
add it gradually/ tentatively as experienced replies above have suggested
yes 'unicorn and rainbows' was a bit over optimistic ... but 'they'll never ever give me any more than 90mcg " is probably a bit overly pessimistic ... they are saying that 'now' , sure .... because they are out of their depth and don't want to give you a free pass to "anything you ask for " .
But i said a very firm NO to a stray kitten last month ..... and now there is a kitten... and my next job is to figure out how to stop it jumping on the old cats head when it's asleep .
One step at a time .
Tell yourself you'll figure out the rest when you get there.
It is not easy to get prescription medications sent to you in NZ but not impossible. You need to show 'reasonable excuse'. Here is a link to the customs rules medsafe.govt.nz/compliance/...
Since your drs have made you sign a waiver regarding using NDT you already have some written evidence. IF/ WHEN the 90mgs of NDT proves to be too little and you need a dose increase, you may need to self source from foreign supplier until you reach your sweet spot of dosage. Then you ask your GP to confirm in writing that you are taking NDT with their knowledge ( if not approval. )
Personally i lost 12 years of my life in the state of exhaustion and mental lowness you're in, being told I 'had no thyroid problem, all in my head', and that after many different drugs trials that I must have "treatment-resistant depression" . #$%@&## !
Funny how all that disappeared after selfsourcing, and getting my NDT to a good level.
I don’t have any experience of NDT NikeGirl, but am so glad that Jazzw , Imaaan & radd have offered you advice. I just wanted to pass on my best wishes to you; keep posting & let us know how things are going! 🦋
Hi I was on NDT for over seven years after my Thyroidectomy back in 2015. I took 2.25 grains which gave me perfect blood test results but more importantly I felt extremely well too. I weigh 63 kgs My FT3 blood tested at around 6 plus. When I was on 2.5 grains during the first year my FT3 rose to over the top limit so I reduced by just one quarter grain and stayed on it for years. Just one quarter can make a great difference on NDT.
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