Thyroid UK
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HAS ANY ONE BEEN SUCCESSFUL TAKING NDT WITH HASHIMOTO'S?

I tried Armour NDT and got myself into trouble going overactive. I went up to 2.5 grains and felt dreadful. I do want to try again (but with Nature thyroid) and perhaps take it more slowly this time and see how 1.5 grains feel?

But I'd like to know how many people did well, against not doing well and having to go back on T4/T3 combination.

Also, having already been on combo do you still have work your way up, given that your body is already getting direct T3 from being on combo?

Thank you in advance.

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Some doctors and patients claim you should not take NDT when you have Hashimoto's disease, as something in the pig thyroid (cannot remember what right now) will perpetuate the autoimmune attack. So they recommend a syntheticT3 + T4 combination if you don't do well on T4 alone.

However, there are many people with Hashimoto's who do just fine on NDT. I am one of them. I have never noticed an increase in my antibody and anti-Tg levels since going on NDT five years ago. On the contrary: last summer, when I had labs before seeing my doctor, my anti-TPO and anti-Tg levels were in range for the first time since my diagnosis 17 years ago.

I guess only you can tell if you prefer NDT or synthetic T3 + T4.

If you are already taking T3, along with T4, I see no need to start low and go slow, as you are generally recommended to do when going from T4 only to NDT. Your body should already be used to getting extra T3.

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Thank you so much, it is so good to hear a success story! May I ask which one you are taking? And what dose? I wont lie, I am a little afraid to try again.

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5 of my lot are all hashimotos and only 1 of them is well on levothyroxine

the other 4 are all on NDT and would not change that for anything

however if your levels of ferritin

folate

b12

vitd3

are not optimal at halfway thru their ranges your body wont be able to process the t4 in either levo or ndt

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Wow! Again, so good to hear. I have had all the above bloods checked. The mistake I made was taking too much. I also think that Armour was stronger than stated and that is where I got into trouble. My T4 went to 50, range ( 11.5 - 22.7) I was spinning all over the place.

:-) Have to say though, my bowels worked well. But nothing else did.

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I take Thyroid-S, for the simple reason that both Armour and Erfa (the only brands of NDT available in Belgium) have been problematic in recent years. Given the price of NDT (all brands are expensive, but Armour has literally tripled in price since 2015), I decided to try Thyroid-S from Thailand, and it works very well.

I seem to need quite a lot of NDT for some reason. I take 7 grains daily and have no hyper symptoms. My labs in August were (on 7 grains):

TSH <0.01 (ref 0.2-4.0) but really unimportant when taking T3

FT4 0.9 (ref 0.8-1.5)

FT3 2.9 (ref 1.7-3.7)

At first, I thought my FTs looked lowish and decided to add half a grain of NDT, but then I started to experience some hyper symptoms (increased heartbeat, increased tendency to sweat). Since I take all the NDT in the morning, and wait 24 h before going to the lab, I can expect my FT3 levels to be +/- 20% higher the previous day...so, somewhere around 3.48 which means FT3 levels in the upper part of range yet in range.

Also, it seems that high FT4 levels (close to upper normal range) taken along with T3 can increase rT3 conversion, and rT3 blocks the action of FT3.

When I increased my dosage, my FT4 levels went up to 1.2 and my FT3 levels to 4.6 (ref 1.7-3.7), 24 h after taking NDT, which I interpret to mean that 7 grains are enough for me. I was surprised that such a small increase in dosage could make such a difference, but I went back to my previous dose (7 grains) and remain well on that. I honestly don't know why I seem to require that much but, as long as I feel fine and have no hyper symptoms, and labs confirm my FTs are in range, I am not worried about that.

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Wow! I'm so happy for you. It is so good hear that you are doing well, actually you sound great. My TSH is rising and I don't feel great, but I have to be patient. Thank you for this insight. So far, two out of two, are giving NDT the thumbs up. I didnt know that Thyroid-S even existed! I have much to learn from this site. Thank you.

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In my experience, people with Hashimoto's do better with a really low, even suppressed, TSH. One unconventional doctor told me once that the very release of TSH from the pituitary gland is what triggers the autoimmune attack, causing the body to continue to create antibodies against the thyroid (which makes sense to me as the release of TSH is intended to tell the thyroid gland to make more hormones). Therefore, he argued, a so called "normal" TSH is not good if you have Hashimoto's disease. It may not be true for everyone, but I never felt good with a so called normal TSH. And, sure enough, my antibody levels did not go down until my TSH was suppressed.

Less conventional doctors may tell you that an ideal TSH is anywhere between 1 and 2, but that was never ideal for me although it was probably better than a TSH close to the upper normal limit. But I did not feel optimal until my TSH ended up below 0.

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Perfect. Thank you so much. Valuable advice.

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I have the exact same experience, and have heard it from other's as well. When my TSH increases to even .60, I can tell something is up. I've had doctors try to tell me that I'm fine with my TSH is 1.5. No, not at all! My symptoms increase and my FT3 and FT4 have also decreased as a result of the my free's decreasing.

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Another one ... I've got Hashi's and started Thyroid-s in November last year. So far all is going well.

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I'll keep my fingers crossed for you. Please keep me posted.

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I am on armour and have hashimotos - I am on 4.5 grains x

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Are you feeling really well? As in, is your thyroid health consistent? 😊

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I have Hashimoto's 5 years on T4 only, the last 10 months on NDT but also 4 years un-diagnosed and feeling like my world was ending. I take THIROYD bought myself off <allusion to site deleted> I got up to 5 grains and felt good, went to 5.5 and my sleep was affected. My endocrinologist (he is more of a diabetes specialist anyway) was panicked, he though I was only on 2 grains and he wants to reduce me to 1.5 and 2 on alternate days. I think I am going to ignore him cause I want to feel good and I was loosing weight to!! Give it a go you can always switch to something else if it doesn't agree with you. Use the Stop the thyroid madness website to research NDT , it lists all the available NDT and where they are made. Good luck.

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Thank you. This all really helps. I have been on Armour before, but went very overactive. 2.5 Grains. I will try a different brand Nature Thyroid. All trial and error. Keep well! Hearing success stories are what keep the rest of us going! :-)

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Yes with Nature Throid! I started last September changing from Levo 100 because my GP couldn't prescribe T3 nor could my NHS Endo. I had a stock of in date NT so gradually combined 100 Levo with 1/4 grain and after 3 weeks went to 75 Levo with 1/2 grain then 50 Levo with 3/4 grain then 25 Levo and 1 grain. Finally dropped Levo and 1 grain increasing every 4 weeks to 21/2 grains but got blood test showing T3 of 7.2! Not good because I had a cardiac event a year before. Dropped to 2+1/4 grains which feels very good. T3 was 5.8 and seems pretty good. Very happy after 3 years of T3 at a steady 3.2 to best 3.5 = rubbish!! Go for it slowly.

Janveron

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Thank you. That has warmed my heart and it's so good to hear. I feel very encouraged!

I am on the combo T4/T3. 50 levo, 20 micrograms T3 - but TSH is rising. LIke I said, I'm having surgery on a frozen shoulder. They want my TSH around 2. I can feel its close, because I feel rubbish and depressed! I didnt do well on Armour at all, so going for the same as you, Nature Thyroid.

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Thank you for all the great information here. I’m also moving soon to NDT after being on T3 only for about 3 months. And I have Hashimoto’s. This is encouraging.

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The key to it is to raise it slowly and monitor symptoms as they reduce or disappear. I take mine 1.5 g in the morning and 1 g at teatime which seems to work for me though some people take it all at once

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Okay, thanks Judburke. I’ve been prescribed NDT and haven’t yet received the meds — they have to be made by a compounding chemist here in Australia; very expensive!!! at $40 per week, about £2 per tablet — so I will be interested to see what dose my endo is starting me on. He’s given me the okay to continue with a tapering down to zero dose of my current 80mcg of T3... tapering to zero over 4 weeks; then 8 weeks of whatever dose NDT he’s put me on ONLY (no synthetic T3) and then test for TSH, freeT4 and freeT3. Sigh... the experiment continues. It’s good to have something new to try though. I still feel rubbish (4/10 most days with occasional hour or two of 5/10) on T3 only, so bring on the NDT!!

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Are you able to import NDT from America legally? He sounds like he really knows what he is doing with getting you on it. Has he checked that your iron/ferritin, B12, D3 and Folate are all optimal as these are key to thyroid health? You've probably read that on here already.

Good luck getting your health improved :)

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Hi Judburke, well I HOPE he knows what he’s doing! Actually I think we’re both a bit in the unknown. I’m one of his few patients who doesn’t do well on the conventional treatment... and I just won’t go away he he! I actually suggested the 4 weeks tapering as it will take time for the NDT to build up to full strength and the T3 is much less than what I’m used to. I didn’t want to fall off a cliff at week one. I have a low-stress receptionist job to maintain so I can pay for this stuff! I’m pretty sure it’s ilegal to import from the US (or anywhere?) prescription drugs to Australia. I might have to look into that one day (hopefully not - I just think it’s WRONG that anyone should be put in the position of having to get life-long, lifesaving meds through dodgy channels, from within AU or UK FFS! Or from ANYwhere of course, but that is sadly not the case.) My aim is to get the right meds in the right dose through a conventional supplier I.e. qualified endo, so that I don’t have to suffer supply insecurity. That’s a good reminder about the iron/ferritin, B12, D3 and Folate being all optimal. I’ve just had these all done by my GP. I have the GP and Endo working together, I get all tests copied to both and they write to each other, keep each other up-to-date, and me :-) before I was struck down by Hashimoto’s I managed business relationships for a living (ah them were the days, when I had energy!!) and I’m applying those skills to this situation. It is a big plus having endo and GP work together with me. I’m trouble ;-) I will check my bloods and maybe post separate on that. Thanks Judburke :-)

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You are welcome :) I am able to import NDT from America into UK legally without a problem and without a prescription. It might be worth putting your test results on here on a new post with the ranges so that others can comment about optimal levels. The people on here are so helpful and are transforming lives :) . Hopefully you'll be feeling amazing soon enough x

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The reason some people do better on NDT over just T4 is that NDT contains not just T4, but also T3, and small amounts of T2, T1 and calcitonin. That additional T3 is key for many people. However, some Hashimoto's patients can have autoimmune reactions to NDT. That is what happened to me. I felt really horrible on it. It was only after I switched to generic levothyroxine T4 and generic liothyronine T3, that my levels improved and I started to feel much better.

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Glad you are feeling better now Shootingstars. I’ve been reading up on old threads here about Hashimoto’s and NDT success/failure. It seems to work for some Hashis but not everyone. And there’s lots of discussion about the antibodies. I am hoping I’m in the “some” group. I’ve already been on a series of T4 only; T4/T3 mixes; and pure T3 experiments (monitored by 1 inexperienced and 1 very experienced endo) over the last 18 months. I felt 2/10 on T4 only; 3/10 on the T4/T3 mix and 4/10 on T3 only. So Jeez, I really do hope I’m in that “some” group for whom NDT does work. How I feel now is not living. It’s like being kept alive as a lab rat.

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Thank you! It's all about getting the right amount of T4 and T3 (if you need it), and also keeping away from allergens that create an autoimmune response. The amount of T4 and/or T3 that you need depends upon your lab results and symptoms. What were your labs when you tried the above medications and what were the doses of the medication you were on at the time? How long were you on that medication and dosage before it was increased? Did you feel better when that was increased to the next level?

Keep in mind with NDT, most NDT contains 38 mcg T4, 9 mcg T3. You responded to a higher T3 supplementation, so you might need extra T3 supplementation.

After my very bad NDT experience, I was started on just T4 by my main doctor (only prescribes T4) but I knew from lab FT3 levels that I needed T3. The T4 almost instantly made me feel much better, I was so desperate for some thyroid hormones! A few days later I added 5mcg T3, felt even better, but was still freezing cold and fatigues. Increased T3 to 10mcg. These days I add an additional 5mcg T3 in the afternoon if I feel like I need it.

What was the consensus about antibodies?

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Hi Shootingstars, yeah I’ve been interested reading about the finely tuned ratios of T4:T3. I’m glad it’s working for you, good on you for persisting and finding what works! I’ve put that on my list of possible experiments if the current 4am-single -dose-80mcg-T3 experiment shows no major improvement; and then if the NDT, then NDT+T3 experiments fail I may well be back to T4:T3 Land but trialling a more nuanced range of ratios, as that definitely seems to work for some here. Ah, so many possible experiments and so little #}*~! time :-] If I get back to T4:T3 Land then I’ll post my history of bloods then; for now I’ve already posted some on a recent separate blog - TSH suppressed, T4 I forget, and T3 above mid-range but not as high as you might think given the amount I’m taking. Some have suggested malabsorption issues despite my strict gluten-free diet (I’m Coeliac) of 15 years. I’m looking into that now too. Gawd, I just couldn’t do all this without the support here. I really appreciate your interest and sharing your experience. Thank you <3

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Oh! And what WAS the consensus about antibodies? Inconclusive from what I’ve read here. A lot of leaky gut talk. Interestingly my endo isn’t concerned about high antibodies (mine are off the charts). Said it’s an unreliable and very expensive test; the levels go up and down like a yo-yo. Still, he has agreed to treat my SYMPTOMS not my blood tests (within reason... he is a doctor after all) and I’m exploring gut health like I said. We’ll see where my antibodies are at again, one day, when I’ve been feeling great for at least a year! Bring. it. on.

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Total thyroidectomy 2015. Severe hashimotos symptoms, bit of cancer etc. . Levo for 18 months. Went over to NDT about 4 months ago.

Feeling much better. Caveats for me are, stuck with a set dose for a set period min 4 to 5 weeks, don’t swap and change. Take set time everyday. I take mine at 07.30 am. Some say split the dose morning afternoon. Doing this made me feel worse. I take 2 pills of 1 grain. Tried one of 2 grain, again made me feel worse.

The change over from Levo to NDT was easy , took time and patience. Slowly replaced Levo with NDT over a span of a month or so. Did it too quick to start and suffered. WP thyroid works for me tried NP thyroid, no good.

Any queries or questions please ask away.

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