Hi there. I'm hashimoto's and was on levothyroxine for just over 2 months and got up to 75mcg. 5 days ago i started taking WP thyroid (natural desiccated thyroid) after reading stop the thyroid madness and researching and coming to the conclusion that i wanted to get of synthetic and treat as natural as possible. However, within a day of starting i felt really bad and by day 5 i gave up and went back on levo thinking that it was doing more damage than good. After speaking to the thyroid community on FB, i've decided to give it another go and taken a smaller dose. i feel like i have a very bad virus right now; really sore throat, pressure headache, sore neck, tight chest, some angina pain sometimes, whole body weak and feel fuzzy, stomach hurts and losing appetite. Theres lost going on though like gallstone, gut issues, and adrenal problems which i'm trying to address all but i wondered if anyone had similar issues switching to NDT and what your thoughts were. I'm supplementing with selenium, vitamin c, iron, vitamin d, probiotics & magnesium every night. i want to persevere with it as lots of people say they struggled but also lots said it just wasn't right for them and they needed T3 added to NDT. slightly confused and very worried about my health as i feel like i'm deteriorating 
switching from levo to NDT troubles: Hi there. I... - Thyroid UK
switching from levo to NDT troubles
Well after another pretty poor sleep, I woke up ok(ish) took 1/2 grain of NDT and within 20 mins I was in a state of anxiety, heart palpitations, clammy hands, nausea, sudden urge to go to toilet, tight chest...so I've taken myself to a&e to get checked out as I also feel like I've got a bad virus - stiff neck, orange mucus, throat sore, ears & head really sore, lost my apetite, chesty cough, blocked sinuses, stomach is tender & feel very sick want them to check for Lyme & EPV as this is not the first bout I've had, 3rd since February in fact. Not sure how much a&e can do but hoping they transfer me to the hospital where they can do more tests, especially thyroid function.
I have Hashimoto's and last year after 5 years on Levo and continued weight gain and other symptoms such as joint pain and migraines I found a functional doctor who agreed to me switching to Nature Throid. I also tested positive to active EBV.
She recommended some dietary changes to help optimise the NDT. This included no grains, no dairy, no eggs, no sugar and no alcohol. The first week or so was hell. After that, no pain, no symptoms at all and within 6 months I had dropped 13kg. I'm still grain, sugar, alcohol and dairy free. Still pain free, I run, play squash and do yoga every week and I'm almost 53.
What dose of levo did you start on, and how quickly did you raise your dose, and by how much?
What dose of NDT did you start on and how did you take it? Did you take the NDT in divided doses or a single dose? Did you cut your levo dose or stop altogether before beginning the NDT?
started on 50mcg levo almost 3 months ago, had a check up and GP increased it to 75mcg 7 weeks later.
started NDT 6 days ago with 1 grain split am & pm - 1 grain = 65mg (9mcg of T3 & 38mcg of T4)
now reduced to 1/4 2 x day as i was feeling very unwell and thought it may be too much of a shock?
took myself to A&E today as i felt terrible within 20 mins of taking 1/2 grain and bloods showed my TSH had gone down to 0.1 which the dr said i'm taking too much of the NDT causing me to go hyper with rapid pulse & anxiety. he also told me to go see my endocrinologist but i know he'll tell me off for taking NDT as he only works with levothyroxine.
i want to do a full thyroid panel checking my Rt3 & antibodies again but it's expensive starting to wonder if i even need to take NDT if my body can't even handle 1/2 grain a day?? i cannot find a GP or endo around me that's willing to work with NDT or think outside the box so need to save up to see someone that will in the london area. until then, i'm a bit scared to continue even though lots of people said they had the same issues at first and NDT can raise thyroid antibodies or make you feel unwell if you don't raise quick enough but there's no way i need to raise if my TSH is 0.1 and i'm getting heart palpitations, insomnia, etc.
i may even skip taking it at all tomorrow and see how i feel. doesn't help that I'm battling a terrible cold/flu bought on by a death in the family so stress levels are high so i know i need to deal with that as a priority.
can you help?
I'm assuming you stopped the levo before you started the NDT.
A couple of problems that can arise are that you are particularly sensitive to T3, or the pills you've been taking have a filler that you can't tolerate.
Other problems that can affect how people tolerate thyroid meds of all kinds are low vitamins and minerals. Low iron (for example) can make people feel hyperthyroid and have palpitations and a fast heart rate even when they are profoundly hypothyroid.
Poor adrenal function can cause no end of problems too. Both high and low cortisol can have bad effects on thyroid tolerance and functioning.
If you want some info on how to dose with thyroid meds of various kinds, then you should find these links useful :
stopthethyroidmadness.com/n...
thyrophoenix.com/adjusting_...
tpauk.com/main/article/how-...
tpauk.com/main/article/trea...
You'll notice that the first link suggests starting to dose at higher levels and increasing dose faster than the other links. I suggest you go with one of the other links which are more conservative.
Yes I stopped levo one day and took the NDT. I've heard that levo stays in your system for a while so could it have been too much to go one from the other and needed a break in between?
I specifically bought NDT with the least fillers - WP thyroid which only has MCFA from coconuts and inulin. So I very much doubt it's the fillers.
I've woke up feeling nauseous, shakey, rapid heart etc again and I haven't even taken the NDT! Don't even want to...
Yes I do believe I have low ferritin and stomach issues which have caused me terrible constipation so I'm assuming I have very low stomach acid, therefore not absorbing vitamins & minerals very well. My adrenals are stressed and I know I have LOW, OPTIMAL, HIGH, HIGH from a saliva test I did back in Feb.
I've got iron, digestive enzymes with HCL & ox bile, holy basil and a good multivitamin on their way so I'm hoping I can support the things that need supporting and start to feel better on NDT. I'm tempted to not take anything (no levo or NDT) until I start feeling a bit better?
One of the things you can do to improve your adrenals and help your body use any thyroid hormones you take is fix as many of your vitamin and mineral deficiencies as you can. The really important ones are iron, vitamin B12, vitamin D, folate, vitamin C.
I've never tried Holy Basil supplements, but I have tried Holy Basil tea which I find helps to calm me down a bit before bed. From what I've read from other people taking it, it should be taken at the times when you had high cortisol on your saliva test. I need to do a new saliva test for myself. If it shows high cortisol (as it always has done before) I will buy Holy Basil supplements and try them myself.
stopthethyroidmadness.com/2...
draxe.com/7-adaptogen-herbs...
livestrong.com/article/4230...
Rhodiola is an odd one. There are people who take it who find it helps with low cortisol and others who find it helps with high cortisol. If you decide to try it don't take it after about 1pm because it makes it hard to get to sleep.
Licorice Root should be avoided if you have high blood pressure.
5-HTP - a lot of people swear by this. It is an anti-depressant, and it can't be taken if you already take anti-depressants. Be very wary though, if this interests you. Start with no more than 50mg at bedtime, and only increase if you feel you need to. Some people (e.g. me) get jittery, anxious side effects with too much. I've been taking 50mg a night for over 5 years now, and I still can't take more than that without getting side effects. But taking the right dose for me works wonders. And it helps me sleep.
Whether you delay taking thyroid meds is up to you. I don't know how ill you feel and how bad your condition is and how much patience you have. I wouldn't delay for very long though - perhaps a couple of weeks?
TSH isn't a thyroid hormone its a pituartry hormone suppression can take place even with levo. DO NOT base your meds on blood tests alone NOTHING should be taken on one of the tests alone. Tell your GP that he is an advisor only and cannot dictate what or how you take.
do you have a suggestion on how to take my meds or continue from here though?
If I were you I would go back to square 1 and start on 1/4 grain and build up over a few weeks. Luckily if you need to stop you can with no side effects.
I only took 1/2 grain yesterday morning, felt better once I'd had an iv drip & was out of hospital. This morning I haven't taken anything and I still woke up with rapid heartbeat, clammy hands, trembling, nausea & urge to go to the toilet. I'm not going to take it at all today. Really hope this passes
Hi...saw this post as I was searching for help. I have had the same problems getting on to ndt. Did you ever find a solution?
Hi, the short answer is no. But I've been on quite a journey since then and I'm now taking a small amount of T4 but added T3 myself. Slowly raising and working with dr Bernard Willis in Winchester who is very helpful and knowledgable. I've gone gluten free and about to start AIP diet along with being prescribed LDN to lower my antibodies alongside a list of supplements. Far from well most days still but positive that'll change. Are you working with a professional st all to help you? In my experience it's because of poor adrenals which stop you from doing well with NDT. Are you looking into that and nutritional deficiencies?
I had my adrenal function tested and it's fine. I'm not working with anyone every knowledgeable. The private gp who gave me ndt seemed to think it wad a simple matter of me being overdosed but blood results indicate I'm still under-medicated. I'm now working from books and through healthunlocked for personal experience advice. I've ordered a blood test for all the usual deficiencies and although I don't feel I have food allergies I may experiment with that.
Are you hashis or hypothyroid? I'm reading a very good book on hashimotos & it explains how NDT can increase thyroid antibodies due to increasing the immune cells attacking so can make people feel worse. I now believe that's what happened to me. Literally just read that bit yesterday! Wish I knew that back then & I wouldn't have bothered with NDT & jumped straight to T3
Where are you getting t3 from? Private prescription?
I wonder i
Sorry...pressed too soon...i wonder if that might be me too. I have Hashimotos. I had heard that can happen but havent had the antibody levels measured again...will organise a blood test. The best i have been was on the non-hormone ndt, Nutrithyroid but i had what docs considered a high level of cholesterol so I gave up and went back on t4...and then it climbed higher over the years. You can't get Nutrithyroid at the moment so I can't go back on it at the moment.
By the way, what is the book you're reading on Hashimotos?
Dr izabella wentz Hashimoto's thyroiditis 'the root cause'. I'm almost half way through and although I thought I was pretty clued up about it (qualified nutritional therapist) I have learned a great deal more that's been really eye opening. It's intense but she has reversed her hashimotos using the correct testing, removing triggers and healing the gut with intense but necessary diets. I'm not exactly excited to go so strict but if it means reversing this horrible disease for good then anythings worth a go right?! I've also got her second book waiting for me at home...the 90 day protocol. My thyroid specialist recommended I follow her work so I'm doing as he said because he's been the first and only 'specialist' that's been open minded and uses functional medicine instead of the outdated and downright dangerous conventional route. When I saw the standard nhs endocrinologist who diagnosed me, his words were: 'take this pill for the rest of your life, there's nothing you can do and your likely to have you thyroid removed at some point' 😒 I feel like making an appointment & having it out with him as I bet 100% I'm more educated about this disease than he is. I'll chuck this book in his face too! Arrogant little s#it! Sorry, rant over. Makes me so mad they get paid ££££ for keeping people like us sick. Go be the best health advocate you can be and learn learn learn 🤓 you'll get there with a good attitude and openness x
I'm reading her Hashimotos protocol right now! I had pre-ordered it. I agree on all counts. Im going to do this blood test which i hope will arrive today and just check all nutrient levels and antibody levels before I decide how to proceed. If my antibodies are raised from Feb when the private gp tested them I'll follow her protocol. I also want to change to t4/t3. Could you tell me how I can get the t3 online?
Oh cool! Have you read much of it yet? She does talk about different protocols in the book I'm reading so I wonder how different it is? I'll send you a link privately x
About a third of the way through. It is quite a comprehensive regime but worth trying I reckon. X
I'm self medicating. No one would prescribe it in Dorset. Training is so out of date...
Hi PJ
I'm a little like you I had a bad reaction when I switched to NDT and still cant really get enough into me but it's better than being on Thyroxin by a county mile.
I'm currently mixing 60-90 mg of NDT into 1.5L of water each day. I use a digital thermometer to measure my temp every few hours. If my temp is around 36deg C I take a couple of swigs if it's closer to 37 I leave it for an hour. I try and get as much into me as possible just before going to sleep and about 3am. While I sleep the head ache is less of an issue and you need the T3 to build you cortisol and testosterone just prior to waking. I also need more if I'm out in the cold or exercising etc. If I don't take enough I get a ache in the thyroid as my first sign. If I take too much I get the brain fog headache thing you describe.
Taking NDT as a daily pill I could only tolerate 30mg per day. This way I am getting 60-90mg into me each day.
I have a pet theory that the ratio of T3, T4 in NDT isn't quit right for me. I think I need less T4 and the excess is pooling my body. I'm going to ask my doc for some T3. I'll add extra T3 to the NDT in my drink bottle. Again using my temp technique as a guide to administering the mix. I'll also get a fresh set of blood tests to see how things are going.
Hi jamesal0, I read with interest your ndt journey, how do you feel? When I want to swap directly on ndt the same happened to me, in the fifth day my condition became unbearable and I abandoned and I returned to the levo + a litlle ndt. For the next attempt, I thought about easier transition(bit by bit) but at the moment do not know yet how, try something like add a litlle ndt and in the same time reduce levo.A human thyroid ratio ia 10:1 and the pig is 4;1, so we need for a good heal 100mcg-levo and aprox.10mcgT3. I calculated and the best combination would be 1grain ndt+62,5levo(but of course it' s very individual) . What do you think?
Hi Adin. Interesting I too was wondering about the ratios of T3/4 in NDT. Also I read somewhere the thyroid receptor cells take a while to optimize themselves to NTD or Levo, and you can't mix the two. But it could have just been propaganda from one side or the other .
I thought more about 4:1 in pig v 11:1 in human thyroid. I don't think that's the important thing though, the thyroid gland is the factory and storehouse. What we need to know is how much T4/T3/T2 etc is in the blood stream of a healthy person. We should be trying to mimic that some how.
re myself
6 months into NDT and I still cant take more than 1 grain perday, I begin to get head aches if I go beyond, the more I take the worse it gets. While I have no empirical evidence, I think the T4 in Levo and NDT pools in my body and causes side effects. I 'm having TSH/T3/T4/RT3 bloods next week. Have been discussing a T3 trial with my doc to see if it works better for me. I'm pretty sure whatever mix I end up on it will contain some NDT . I also found a small amount Androgen5 (testosterone) (.25mil) made a huge difference to my temperature stability. My temp was dropping up to 2 degrees in a few hours. My morning temp would be a low 34.7 deg C and my heart beat was 45. In Hospital ED would set the monitors off. On Androgen I can easily keep it above 35.5 deg and 60-70 beats.
Keep me posted on how you go.
How are u doing now did u find a cause of ur anxiety and pains caused by NDT?
Hi, yes it was NDT causing me anxiety and also pooling RT3 so I now take a combo of t3/t4/LDN and many supplements which seem to be working for me. I have been on this regime for over a year now but still get very tired and ill now and again which is caused by diet rather than medication.
Which t4 u r using and t3 I mean company and how did u decide and who decided that u need to go for a combo? What it means pooling rt3 and how it can be stopped happening or what it causes it? What endocrinologist you see and where he is ?
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