So I'm to take 1 grain twice a day.
I used to take my levo around 6am so intend to take my 1st grain of NDT the same time.
Im trying to plan when to take grain 2 and need to know if I can drink anything in the 1 hour either side of taking it?
I know you can't have food or coffee but what about other beverages, ie squash, flavoured water etc?
Am I only allowed plain water?
I've tried Google and its not clear!
Any help would be appreciated.... thanks.
originalText scroll down the above post and read pennyannie reply of how to swap fro levo to NDT. It is best to take things slowly to give the body time to adjust. Starting on a grain is too much. Normal starter is a quarter or a half grain
Ill try and find that post. Thanks.This is the dose my consultant has advised as I have been unresponsive to Levo since my TT 3 years ago.
Thanks again
healthunlocked.com/thyroidu... the post. Sorry it didn't show up from my phone.
Consultants and doctors are not particularly good in knowing how to start dosing in my experience so I'd go with what @pennyannie has done.
Thank you Lalatoot ... 👍
Did you find it - or should I start again ???
I got it thank you 😊
Feel free to ask anything that doesn't make sense or not covered :
If I could do cut and paste - things could be so much easier - hey ho !!
Thank you... I will 👍
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 mcg.
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and this includes your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D plus inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing, so whilst we can't turn back time we can do something about these other salient points.
It is essential that you are dosed on your T3 and T4 blood test results and not a TSH reading as now without a thyroid your HPT axis ( Hypothalamus / Pituitary / Thyroid ) the feedback loop has been broken as there is no thyroid to close the loop.
If your thyroidectomy was because of cancer it's said the TSH must be kept low suppressed - and this will happen with any thyroid hormone replacement option if dosed correctly.
Some people can get by on T4 - Levothyroxine only :
Some people find that T4 seems to stop working as well as it once did and add back in a little T3 - Liothyronine to restore well being.
Some people can't tolerate T4 and need to take T3 - Liothyronine only :
Whilst other people find their health and well being better restored taking Natural Desiccated Thyroid which was the original treatment successfully used to treat hypothyroidism for over 100 years.
NDT is derived from pig thyroids dried and ground down into tablets referred to as grains and contains all the same known hormones as that of the human thyroid gland.
I agree with LaLaToot. Don't start on 2 grains a day. That's ridiculous and setting you up to fail. I started on 1 grain a day several years ago and crashed into an anxious shaking wreck and gave up completely.
Now, on T4 and T3 combo, I was so desperate to have someone else take my hand and lead me for a while after years of trying to sort myself out, that I did what my private endo recommended as starting T3. I knew it was wrong, but I was in need of time off doing it myself. 18 months later I am now going through the pain of reversing those decisions and am probably many months away from hopefully feeling a bit better.
So no, consultant or no consultant, don't do it. Do what people have tried here. We are so much more experienced with the problems. The consultant never sees the damage he does to people. When they go back his decisions will be based entirely on a blood test.
Welcome to the forum
How much levothyroxine were you taking before changing
What were your most recent TSH, Ft4 and Ft3 on levothyroxine
Important to test vitamin D, folate, ferritin and B12 at least once a year
What vitamin supplements are you currently taking
Hi SlowDragon, I was on 125 levo daily.
I take alphacalcidol daily due to loss of parathyroid at surgery.
I'm not sure of latest results only that I'm not converting. I've not had any good results since TT and Endo referred me to my current professor who suggested we try the NDT.
Vitamins were all good at last check.
I was just enquiring on the rules of eating/drinking around dosing of NDT as I'm only used to taking levo in the morning.
I was just trying to work out the best time to take my PM dose around my lifestyle hence my question.
I was directed to another post which should answer my questions.
Thank you for your response and time.
I think it's fine to switch from levo to one grain of NDT, but not two. That's too much. Make the switch and in four weeks if your symptons are not resolving cut that second dose in half and take it at least 5 hours away from the first dose with water . Wait another 4 weeks before increasing again and only of course if warranted.
Good morning to you :
There is nothing on your profile page and you will be better served if you give forum members a little more information as to why you ended up without a thyroid and asking for help on a forum - was it cancer, was it Graves Disease - was it something else - as it does make a difference ?
Have you only ever tried T4 - monotherapy or did your endo offer T3 as an adjunct to T4 ?
Can you please share with forum members your last set of blood tests showing a TSH, T3 and T4 reading and range and your ferritin, folate, B12 and vitamin D levels ?
I find it strange that having been referred to a Professor you have been left high and dry as to how you should dose with NDT - s/he should have a duty of care and have advised you how to take this treatment option of thyroid hormone replacement.
Hi.
Long story short .... I apparently had graves disease, according to blood results, with no symptoms.
This was picked up when I had bloods done for another issue (non related).
For about 6 years my bloods would show graves for months and then go normal for months despite taking no medication .... as I had no symptoms.
3 years ago my endo scared me into having TT saying that the graves would shorten my life (heart etc).
I had the TT (biggest regret of my life) and to me my life has been ruined as I have not felt human since!
About a year ago I hit rock bottom and contemplated suicide.
Thankfully my family and friends got me through my darkest time.
I was started on 100mcg of levo after TT and have had chronic hypo symptoms ever since ... despite my bloods still reading as hyper!
My endo retired and then everyone I had an appointment with just wanted to reduce levo due to the high T4 blood results (that's all they ever focused on!)
So for years I have been fighting with the so called professionals and getting nowhere.
Before my endo retired he had referred me to a professor in another health board as he believed my problem to be "my body not converting the levo".
After a long wait due to Covid I had my consultation with my professor (that has now taken over my care) who is more understanding and is not focused on blood results alone!
After numerous discussions, medication changes, trying to add T3 to the T4 ... which didnt work we are now trying the NDT.
I was given instructions to take 1 grain twice a day by my professor.
My question on the forum was purely about eating and drinking around the dose, thats all I wanted to know.
The reason I didn't go into the details/history is because I'm sick of the story, I'm sick of my life, I'm sick of the battle and telling the story just makes me depressed.... I just want my life back!
Apologies if I sound off, Its not personal and I appreciate your response along with the others that have taken the time to respond to my question.
Thank you all and I hope that one day I can post that the NDT has helped me be the person I once was!
Well, welcome to the club as I have Graves as well, but had RAI thyroid ablation in 2005.
Did you try a T3 / T4 combo or T3 only - did the T3 agree with you ?
Your NDT contains trace elements of T1 , T2 and calcitonin plus a measure of T3 and a measure of T4 - if taking Armour 1 grain contains 9mcg T3 + 38mcg T4 :
T4 takes around 6-8 weeks to finally leave the body BUT T3 leaves the body within days :
If you have just stopped T3 how much were you taking and did you split this dose ?
If you were dosing twice and were ok on T3 you could start off at half a grain am and pm if it's been suggested that you split your dose - some people dose twice, others do not.
No thyroid hormone replacement works effectively until your ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
Conversion of T4 into T3 - the active hormone can also be compromised by inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing so I haven't learnt how to turn back time - yet - but I've learnt through reading a few books and this forum that we need a strong core body in order to claw back or health and well being.
This seems especially true when with Graves Disease - as we tend to run with higher than " considered normal blood test numbers " which is all mainstream medical seem to look at - and who seem not to understand the implications of their actions.
This amazing little gland runs our body's metabolism and all that that entails, our physicality, our emotions, our mental ability and cognitive functions, and our psychological and spiritual outlook.
You might like to read around Graves Disease as we are looking at an auto immune disease for which there is no cure. elaine-moore.com
Mainstream medical believe that Graves Disease is life threatening and suggest drastic irrevocable treatment :
either a TT or the cheaper option of RAI thyroid ablation - either way -
you still have Graves but now without a thyroid you are not considered to be with a life threatening health issue but ' just ' hypothyroid which is considered more easily treated, out of hospital, in a primary care setting.
Interestingly the most current research into our poorly understood and badly treated AI disease is suggesting the longer the patient stays on the AT treatment the better the outcome for the patient :
pubmed.ncbi.nlm.nih.gov/338...
There is another post running that you might find interesting so shall try and link you in :
Thank you for explaining where you are in your thyroid, or lack of, journey - there are other forum members here who are Graves and been through similar, you are not alone and we are here to help, if we can.
I became very unwell around 8 years after RAI thyroid ablatio and only started my learning curve after the ' event ' - and refused both T3 and NDT through the NHS .
I found Elaine Moore's website very interesting and have had to work out why my Graves was triggered and learn of ways to calm down my own immune system response.
There are full details on my profile page if interested.
I started self medicating around 4 /5 years ago - I'd read enough by then and funnily enough I felt and still do feel so much better looking after myself as staying within the system simply exacerbated my symptoms as I too was treated as though I was overmedicated when in fact the opposite was the reality.
Tired Thyroid - from Hyper to Hypo - Healing - debunking the TSH by Barbara S Lougheed :
Your Thyroid and How To Keep It Healthy written by a doctor who has hypothyroidism - Barry Durrant-Peatfield wrote his book to help patients self advocate - it is an easy, sometimes amusing read and my goto.
I take one NDT around 7am-8am & one about 8pm-10pm. 12 hours ish apart to keep a steady state. The evening one has helped with sleep.I take with a glass of water & try to have nothing else an hour either side (other than water). sometimes I have a coffee 45 mins after the morning NDT tablet & it does'nt seem to affect.
Yes I would have fruit juices. I am terrible though I take my NDT with tea (I know I shouldn’t) as stops absorption.
Hope you get on well with NDT. It is really amazing for some of us and changes are lives
I used this proticol which is very informative. It worked well for me. I gradually increased NDT whilst reducing Levothyroxine replacing 25mcg with 1/4 grain NDT. Going in at 2 grains is quite heavy duty. I only needex1.25 initially (125 mcg levo was best dose I could achieve) although some do a straight swap ., ide be tempted to go more cautiously. I think the posted protocol was how doctors determined correct dose when NDT was the only medication given ( bar straight T3 which was done but I think rarely) doctors no longer have this knowledge
Hello Juniper2965
You can drink water etc with NDT. they say no food or caffeine 2h before or 30 min after.
I take NDT after being a poor converter and it changed my life.
I take 2grains NDT in the morning at 6am on an empty stomach and then again 3.25 grains around 4:30. Personally I don’t always leave 2h depending on what I have to eat. It doesn’t take 2h for a power to leave your stomach! Go by how you feel.
You will feel if you get it right and also if you are taking too much.
Good luck!
Ive been on a ndt for 15years. I did my transition across with a famous and well known respected doctor. As you are already on 125mcg of Levo you can technically take a ndt equivalent. You dont have to start from scratch. However when I did it I did take mine a bit more slowly . Which ndt are you going to be taking? Most ndts have 38mcg of T4 and 9mcg of T3. On stopthethyroid madeness website they have a conversion chart. Roughly speaking T3 is Four times the strength of T4. So two grains of Armour say would be 76+ (4x9 ) 36= 112mcg. This is a little less than what you are currently taking.
If it were me Id take it at one grain in the morning and 1/2 grain late afternoon. Its a good ideal to ensure its well away from a meal, so I use to take it roughly one hour before a meal. Avoid caffeinated drinks to take it and in the hour afterwards. I always just drank water woth it and wait. For best up take its best on an empty tummy. Tummys take about three hours after a meal to empty. However these days I take all my daily Armour in one go first thing as I no longer get the late afternoon slump like I used to. This is primarily because I have regular b12 injections due to b12 deficiency. Correcting the b12 has enabled me to utilise my ndt better I guess.....so no longer need to split. Splitting is a personal preferance and we are all different as to what works best but if your doctor has advised splitting I would follow that guidance.
To get up to two grains splitting the dose, I personally would not wait eight weeks before a dose increase as 1 1/2 will probably not be enough but wait a couple of weeks and if you feel ok increase up by a quarter, then another quarter anothe two weeks later. After that wait the usual period of time for any further increases, blood test to check before . This is only what I would do I am not medically qualified.
Re blood tests I was advised by three well respected endocrinologists to ensure there is a 24hrs gap between last dose of ndt before taking bloods. I know on here they recommend something different but Ive always followed what my specialists told me. I was told that the blood test would then show a reliable ft4 level. The T3 level fluctuates a lot naturally, deprnding on time of day, level of activity so it is less reliable because of this. This is what my specialists told me. On here the argurment is that the 24hrs break will give a false low T3 level. Am not sure that is true as thats assuming I have no capcity to convert and of course I do. Anyway I follow my doctors so please don't shoot me down!!
Blood tests were designed to check the synthectic thyroid horomones and not ndt. Originally ndt was prescribed and treated for many decades using signs, symptoms plus temperature and pulse rate taken before rising first thing.
Lastly we are all different so please bare in mind that what method works for one may not for another. Keeping a record of what your taking, including vits, minerals, plus your symptoms and signs, temp and pulse before rising, daily, gives a useful record that can help to spot patterns over time. I would add your blood test results to this little log.
Hope all goes well for you.
You have said exactly what I was going to say, I also dose exactly the same way as you do…once per day because of 3 x per week B12 jabs.
Thats interesting to know witchcat. Its all about our b12 level isn't it! 🤣
It made a big difference to me. When I was getting only the starvation B12 rations allowed by the doctor I was never completely well, once I started SI everything just seemed to slot into place, so yes I think the B12 make a lot of difference…but try telling the medical profession that 🙄
I know! In fairness nhs medics eventually agreed to my daily jabs but I find I need twice daily as dont seem to retain it. So I buy in the rest. I do all my jabs SI none at the GPs.....they supply me with needles syringes from the hospital, the ampoules are on prescription. Chemists who don't know me raise an eyebrow when they see the quantity! 🤣 But am heaps better so don't care.... Had hoped I could reduce after a couple of years but so far no joy. Lol... x
Hi Juniper
It's normal to crash an burn a little on NDT. But this is ok as you will learn what it feels like to go hypo and then recognize the symptoms for next time. You should also experiment with going low for a day or two and see how that feels. Knowing where your upper and low is will help you steer and optimize NDT dosage. Also you can take food with NDT it just knocks the edges off abit - handy if you don't quite need a whole grain - like you only need 50mg and your tablets come in 60's. Food also gives you a delayed release . I have 60mg about an hour before dinner with cheese and biscuits wash it down with a good red. Then another 60mg about 4am when I get up for a tinkle. I find it helps me sleep. I also often have 15mg just before swimming or jogging at lunch time. The T3 in NDT dilates your blood vessels , making sporting activities more fun. If your NDT comes in a capsule you can pull it apart and take the powder - ie if you currently need 90mg, you take a 60 plus half a second 60. Finally you can't do a calculation (like table below) and say I was on 200mcg Lev therefor I should be on 120mg NDT. It wont work. You have to increase slowly over 12-18month "optimizing your dose" Your body wont know what hit it at first. Use body temp, tingles, anxiety, energy levels, sleep patterns to drive dosage. Blood tests are just for GP's and almost meaningless for getting "Normal" back on NDT. You need about 15mg more in winter than summer too.
J
Hi I also take NDT which I source myself. Since my TT seven years ago I have been taking 1.25 grains at around 6am. I take the other 1 grain I hour after lunch at about 1.30pm.Nothing after but plain water for around 1 hour. This works for me. Perhaps if you have been on Levo take things slowly at first. Most Doctors and Endos no nothing about the thyroid.
I forgot to say that 2 grains contain about 78 of T4 and 18 of T3 plus other small traces. Taking 18 of T3 straight away may be a problem its strong. Start slowly maybe half a grain in the morning and another half in the afternoon. This is what I did to start with. Then increase every 10 days or so. All with plain water and away from food.
Hi, I have gone from lemon to not and my doctor said to switch from 200 mcg level to 1 grain armour twice a day. I was a bit concerned, but did it anyway. And I was fine. I took first dose early morning which because of my job is anything from 4.30 to 7 am. Then second dose generally around 3pm. Only having water before and after for at least an hour. I was fine, didn't feel any ill effects. Have been on that dose for two months and having next blood test on Thursday and hoping for a small increase. Good luck with whatever you decide. I am only saying what worked OK for me, I have only got to where I am now by taking advice from the wonderful people on this site helping me.
Waveylines did a nice transition description. After you've been taking your NDT for a while you'll find your own rhythm. I take 1 grain in the am and 1 grain sometime later in the day when I get around to it. After several years I no longer obsess about food/drink but if you can block out and hour before dosing and a half hour after you should be good. Calcium binds things (not just thyroid meds) so try to get any calcium supplements farther away. Fiber slows things down so may, as james mentioned may "take the edge off",
In the long run 2 grains may not be enough - I take extra synthetic T3 sometimes. If I try to increase my NDT dose it's too much T4 for me - I seem to be sensitive to T4 but not T3.
Do keep a tablet or two in a pill box in your purse so if you're caught away from home for your afternoon dose you'll have it with you.
Patti in AZ
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