NDT toleration: Hello everybody, I would like to... - Thyroid UK

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NDT toleration

MartinaM profile image
71 Replies

Hello everybody, I would like to ask if there is anobody who has problem with NDT. My adrenals/iron are ok but NDT (just 1/2 grain) makes me anxious,heart palpitations,sleep issues. But on this amout of NDT I am not hyper. What can be problem? It is worth to try syntetic FT4 only or FT3 only? Thank you for your advice. I have never before on any thyroid meds, I found out I have Hashimotos.

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MartinaM
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71 Replies
SeasideSusie profile image
SeasideSusieRemembering

Welcome to the forum MartinaM.

I have never before on any thyroid meds.

If you've not been on thyroid meds before, why have you not started with Levothyroxine rather than NDT?

Are you in the UK (it's helpful to fill in your profile and your country)? If so are you self sourcing NDT?

What were your thyroid test results that prompted you starting on NDT? Can you post them along with their reference ranges - TSH, FT4 and FT3? Any other test results to share, you have mentioned that your iron is OK, have you tested all key nutrients - Vit D, B12, Folate, Ferritin, iron panel?

NDT (just 1/2 grain) makes me anxious,heart palpitations,sleep issues. But on this amout of NDT I am not hyper. What can be problem?

It could be as simple as you may not need the T3 that is in NDT. Not everyone does. Post your results, let's see where your FT3 lies along with the other thyroid levels.

Did you have the anxiety and palpitations before you started NDT?

It is worth to try syntetic FT4 only or FT3 only?

It probably would have been better to start on synthetic T4 (Levothyroxine) first to see how you did with that, it does actually suit many people, it's the minority that do better with NDT or a combination of Levo and T3.

Please post your full test results/ranges from before you started NDT and current ones since you've been on it so that we can get the full picture.

MartinaM profile image
MartinaM in reply toSeasideSusie

Dear Susie, thank you for your reply 😇😇🥰My results are here..I tried NDT from pork, because I read pople fell better on them..

Results
SeasideSusie profile image
SeasideSusieRemembering in reply toMartinaM

NDT doesn't work for everyone, it didn't work for me.

Are those tests from before you started NDT?Do you know that your raised TPO antibodies suggest that you have autoimmune thyroid disease?

MartinaM profile image
MartinaM in reply toSeasideSusie

Yes,before meds. Of course I know, I want to put them in remmison ;)

SeasideSusie profile image
SeasideSusieRemembering in reply toMartinaM

Are you self medicating or is a practitioner prescribing your NDT?

MartinaM profile image
MartinaM in reply toSeasideSusie

I have practirioner,she thinks I should be okay on NDT of 1 grain

greygoose profile image
greygoose in reply toMartinaM

I want to put them in remmison

Well, sorry to tell you this, but NDT is not going to do that. Nor any other type of Thyroid Hormone Replacement, either. What do you mean by 'remission', anyway? You mean lower them? Antibodies fluctuate all the time, so if they level drops it won't be because of the NDT, they will rise again. And, even if they disappeared completely, you would still have Hashi's, because the antibodies are not the disease, nor the cause of the disease. They are the result of it, and it's not the antibodies doing the harm.

Welcome to the forum. :)

MartinaM profile image
MartinaM in reply togreygoose

Hello, thank you for explanation! :) I know that NDT wont help with antibodies, I started low carb/animal based diet to do that :)

greygoose profile image
greygoose in reply toMartinaM

Well, make sure you don't go too low carb because you need carbs to convert T4 to T3. :)

in reply togreygoose

This is curious to me as I eat low carb, what is too low carb, ? I find this tricky as I have insulin resistance also...

FancyPants54 profile image
FancyPants54 in reply to

Basically don't try to go Keto. Or even close to it. Eat some slow acting carbs with your meals. I tried Keto and nearly killed myself! I have never felt so terrible and I've never properly recovered since either.

Hey, sorry you are having problems. These are exactly the issues that many have when their adrenals are not happy. May I ask how you checked your adrenals? 🙏

MartinaM profile image
MartinaM in reply to

Hello :) yes I did, seems okay, but I know I have stressfull job,which I just quit :)..I am using over 3 month holy basil, so I think now I am ready for NDT,but can be I need to for while use syntetic FT4 :(

in reply toMartinaM

OK 🙂 How did you test your adrenals?

In my opinion, your reaction to 1/2 grain of NDT is not an indication you need T4 only.

MartinaM profile image
MartinaM in reply to

I did saliva test-3 samples in day. Results were in range,but to be honest, in Slovakia these kinds of test are not the best ones :). Low/high cortisol cause the same problems?

in reply toMartinaM

yes, the same way there is an optimal place to be in your thyroid bloods and symptoms, there is an optimal place to be re. Cortisol. Can you post your results?

Low and high cortisol can give you the intolerance symptoms but they inhibit thyroid hormone metabolism in different ways x

MartinaM profile image
MartinaM in reply to

Yes, thank you for help :)

Evening 20:00
MartinaM profile image
MartinaM in reply toMartinaM

Before lunch

Noon at 11:00
MartinaM profile image
MartinaM in reply toMartinaM

7 am after I woke up

Morning
in reply toMartinaM

Can you give me the ranges? 🙏

MartinaM profile image
MartinaM in reply to

Ranges are there, in Slovakia we dont have good tests for cortisol ;(

in reply toMartinaM

OK, I’ll try to work it out myself…

So “rano” is morning? And should be under 24? And you have 9.71?

“Poobedee” is noon? And you should be under 9.5? And you have 2.65?

“Polnoc” is nighttime? And you should be under 11.3? And you have under 1.5?

If I’ve interpreted this correctly and these are your results then you certainly do have low cortisol. If were you I would stop the Holy Basil immediately, as this lowers cortisol. But let me know if I have worked those values out correctly.

MartinaM profile image
MartinaM in reply to

Yes you right. I started holy basil before sleep because I had sleepong issues..during the day I dont feel tired..Do you suggest to start taking something like adrenal cortex?

in reply toMartinaM

yea it definitely looks low across the board.

rt3-adrenals.org/low_cortis...

There is information about adrenals + supplements for it at the bottom of the page x

Imaaan profile image
Imaaan in reply toMartinaM

You can try combining valerian with magnesium glycinate for sleep. I have sleep apnea and been using this combo for a decade or so

Snqanq profile image
Snqanq in reply to

Hi dontforgetcortisol just ask what should we do to fix ..low or high cortisol cases?

in reply toSnqanq

Ari3 and Snqanq you need to always test cortisol via saliva cortisol test, it can’t be guessed. Once you know your levels you can work out if you need ACE/HC (to raise it) or other things to lower it.

MartinaM profile image
MartinaM in reply to

So I will try ACE and will see,but I dont feel tired or exhausted, I will look also for better testing because I had always the feeling if high cortizol

in reply toMartinaM

do you mean you have already tried ACE or that you will try it and expect it won’t help? The thing with cortisol is that you must go by the test results IMHO, I also had what I thought was high cortisol but in reality I actually have adrenal insufficiency, so tests are always more important to me than symptoms when it comes to cortisol. Good luck!

MartinaM profile image
MartinaM in reply to

No I just wanted to start NDT and when I found out that I dont feel well I did cortisol test (definetly not good one, because of this strange ranges :))..I will try to look for better one..but I can give a try for ACE, in your opinion I can do any harm with it? Or it is just like if I feel better I can keep it or if I wont I will stop...thank you for your advice ;)

in reply toMartinaM

it’s best to follow the directions on the link I gave you above about how to dose ACE, sometimes people have the tendency nice to take cortisol that seriously but it is just as potent and important as thyroid hormone - they work together. In my opinion you can do harm with any of these things, so you need to follow the instructions carefully and do your dats, raise accordingly etc.

Ari3 profile image
Ari3 in reply to

what is the best adoptigens to balance cortisol please ? Any advice you can give ?

Imaaan profile image
Imaaan

I took ndt plus T4 meds for about 11 months until I got close to optimal. Taking additional T4 with my ndt made it easier for me to tolerate the ndt. Also, every increase of ndt gave me a whole bunch of symptoms for about 3 weeks or so. I could only increase my ndt by 15mg at a time .

I was and still am taking adaptogens for my adrenals

MartinaM profile image
MartinaM in reply toImaaan

Interesting, you had problems wirh low or high cortisol?

Imaaan profile image
Imaaan in reply toMartinaM

It was on the high side but I never did a 4 point saliva cortisol. My results were from cortisol blood serum test

tattybogle profile image
tattybogle

it is not usual to prescribe thyroid hormone replacement for TSH / fT4 / fT3 results like yours. why was it prescribed ? did you have any symptoms of hypothyroidism ?

Taking thyroid hormone replacement will probably not do anything to lower your antibodies , some people find taking NDT can actually increase their thyroid antibodies at least initially , eg. healthunlocked.com/thyroidu...

Taking thyroid hormone replacement (especially if it contains T3) when it is not needed is likely to cause symptoms of overmedication. eg anxiety ,heart palpitations, insomnia .

Your TSH / fT4 fT3 do not give any indication you need to take thyroid hormone , and your symptoms of overmedication when taking NDT also suggest you don't actually need it.

You TPOab are not very high ,so (if you didn't have symptoms of hypothyroidism) perhaps you may benefit more from looking into an autoimmune protocol diet rather than taking thyroid hormone replacement unnecessarily .

MartinaM profile image
MartinaM in reply totattybogle

Hello :) yes, you can be like that, but I ak trying to concieve and I have long cycles so I hope when my thyroid hormones will be higher I will have better chance..

waveylines profile image
waveylines in reply toMartinaM

I'm sorry to hear you are having problems conceiving. This practioner that you are under are they a qualified hormone doctor? And what have they said about your low cortisol? I'm a bit confused about what is going on to be honest as in the UK you would not be prescribed thyroid hormone treatment on those results.Have you seen a gynaecologist about your problem with conception? It can be due to many reasons.

MartinaM profile image
MartinaM in reply towaveylines

❤..yes I did,but obgyn said everything is okay..it is really hard to find some practioner who will look on your body as a whole...thats why I started myself to do something because I belive that balancing my thyroid will be the key :)

waveylines profile image
waveylines in reply toMartinaM

Ahhh I see. I'd be wary of doing this. Thyroid hormone treatment will not boost your thyroid. What it does is replace the thyroid hormones. This mean you become dependant on the thyroid hormones and have to continue taking them for life. In all honesty on results like yours I wouldn't want to self medicate.

I do understand how the specialists look at parts rather than the whole. It sounds like you need to be referred to a gynaecologist who specialises in fertility and conception.

MartinaM profile image
MartinaM in reply towaveylines

In situation like TTC I need to try :(

CLT115 profile image
CLT115 in reply toMartinaM

Be sure your husband is wearing something like cool boxers, or even nothing for awhile. Seriously. Heat down there can effect sperm count & their viability. It happened to us. I thought it was me. My husband stopped wearing tighty whities & I was pregnant in 4 mos! You might want to try that too! My daughter is 45 ... I'm 67 now! 😊

MartinaM profile image
MartinaM in reply toCLT115

Thank you 🥰

in reply totattybogle

tattybogle In my own tests I have found that being in thyroid hormone replacement reduces my antibodies. I think this is because when TPO is reduced, associated antibodies come down too. I don’t think I am the only one in this scenario - I will try to find some literature on it x

tattybogle profile image
tattybogle in reply to

yes taking thyroid hormone/ lower TSH often does reduce antibodies ( or at least 'they went down anyway') ,

but specifically NDT can sometimes cause a spike in them. ( not in everyone obviously .... was just making sure Martina was aware that NDT can do this sometimes in case that was the only reason she was taking it but it's now apparent she is using it for TTC .

in reply totattybogle

in my n=1, NDT has only ever contributed to lowering my antibodies, but I think this person has these antibodies even before taking NDT. I think there is quite a bit of literature around the idea that antibodies dont necessarily correlate with severity of disease anyway so might just be chasing my tail on it anyway 🤷‍♀️

tattybogle profile image
tattybogle in reply to

my point was ~as they are very low, it would be a shame if NDT made them go up , it can do that sometimes.

yes , they don't (directly) correlate to either symptoms or severity of disease.

in reply totattybogle

I see, yes. I think chasing down antibodies is a hiding to nowhere. I’ve been haunted by hashi’s for 17 years since I was 13 yo, I barely ever see them out of range unless I am under medicated, but I’ve been bed bound on and off for nearly 2 decades with this disease, so antibodies =\= severity of disease. I do think her t4 is in a bad place - which we know needs to be highish for healthy baby in first trimester, and while her T3 conversion is OKish, I don’t like the look of that T4 at all, esp. as a TSH should probably be a bit more responsive to that flagging T4. Maybe she is early enough to use lifestyle interventions like LDN, AIP diet etc. but that’s a whole new world of difficulty… 😩

tattybogle profile image
tattybogle in reply to

personally i'm not convinced that doing 'this or that' is necessary to try to reduce TPOab ... mine were 2499 / then >3000 after 7 wks on levo ....... 17yrs later they were 195 .. meanwhile i was smoking fags , eating donuts , and having far to much white sugar .

and when they were 'only' 195 i was in a much worse state health wise than when they were >3000 .

in reply totattybogle

do you think this could be that over the 17 years your thyroid had less healthy tissues available to attack?

tattybogle profile image
tattybogle in reply to

yes .. i assume it's pretty F**d .,, but with only those 2 tests and no U/Sound , no idea really .

tattybogle profile image
tattybogle in reply to

fT4 is 25%.

that is not necessarily flagging, 25% may be it's usual level

50% of healthy people would probably have that level .

eg out of these 10 healthy people :

2 have fT4 lower than 25%

3 have fT4 at /or slightly over 25%.

.
in reply totattybogle

in the spirit of discussion and wanting to learn, and (not being obstinate!) isn’t it well known that these sample groups almost always include people who are actually not well at all? Similar to the issues we have had re. TSH range.

Paul Robinson “the thyroid patient manual” p.61-

“A low in range FT4 combined with sx can strongly suggest hypothyroidism. A mid-range if higher FT4 does not exclude hypothyroidism…. A low or even mid-range FT3, combined with sx, can be enough to suggest a diagnosis of hypothyroidism…. A caution on reference ranges… the healthy ranges [we use] include 95% of apparently healthy people, however these people were not screened for symptoms… it means applying the reference ranges rigidly often results in bad decision making.”

I think your image is from Tania S? Does she use people who are genuinely healthy in her sample examples? Admittedly, we don’t actually know Martina’s symptoms as she hasn’t mentioned any.

Edit: this is a really long winded way 😮‍💨 of asking how do we know those sample subjects are healthy when we have a history of including unhealthy subjects in thyroid hormone research.

tattybogle profile image
tattybogle in reply to

i always ask myself the same question when see 'healthy' samples . and you're right to question it ,, but in that particular Ankrah-Tetteh et al. study ,, i seem to remember the 10 subjects were properly screened / genuinely healthy/ feeling well/ no thyroid antibodies etc etc ,, but it is while since i looked at in in detail and it's always a good idea to look at the actual study's to find the nitty gritty. of who they were using .

i agree that the 95% ref ranges for TSH / fT4 / fT3 will probably include a lot of 'not healthy/ not feeling well people, due to the nature of how they collect samples.

Someone with hypothyroid symptoms and a low in range fT4 with non elevated TSH is obviously a candidate for investigation to see if central hypo is an issue meaning TSH hasn't risen appropriately ,, ,, but in someone with no hypothyroid symptoms and low in range TSH / non elevated TSH i think we have to be very wary of assuming an fT4 of 25% is a problem.

in reply totattybogle

yes I agree it comes down to her symptoms for these particular bloods. But personally a T4 of 25% through range + positive antibodies who wants to get pregnant is a big old 🚩🚩🚩 for me x 🙏

tattybogle profile image
tattybogle in reply to

fortunately on here we can have a range of views and discuss them reasonably and equally ... if only endo's would do the same....

if struggling to conceive with no other cause found , then yes it seems reasonable to try thyroid hormone ,, .. as long as it's done with full awareness that supplementing thyroid hormone will reduce the thyroids own T4/T3 production for the duration of taking Thyroid hormone , and most importantly knowing that the fetus is totally reliant on maternal T4 / T3 for it's first few weeks ,and therefore a stable replacement dose should be achieved BEFORE trying to get pregnant ,, and dose increased as soon as pregnancy confirmed if needed..

in reply totattybogle

totally agree!

Rhannii7 profile image
Rhannii7

So depending on where you are in the world. It could be that you like alot of us out here in Australia are getting your medication compounded. There is a heap of us out here who are struggling with the compounded NDT's , they are causing lots of side effects and issues for everyone like you described.

MartinaM profile image
MartinaM in reply toRhannii7

Really? I have NDT from austrian pigs :D

Rhannii7 profile image
Rhannii7 in reply toMartinaM

And are you doing well on it ?

Rhannii7 profile image
Rhannii7 in reply toMartinaM

Honestly, its gone to the dogs the NDT in Australia. Call the pharmacy tomorrow and ask them which company they buy the raw powder from. Then let me know, I'll be able to tell you all about the hell ride ive been on for 2 years

Yogagirl1 profile image
Yogagirl1 in reply toRhannii7

are you still on the NDT or have you changed?

Ajva profile image
Ajva

I find with NDT it took me a while to get used to it. Also I can not go over a 1 grain. So I am on 1 grain with added synthetic t4. I did attempt to move from NDT to synthetics and was on a combo of synthetic t4 and t3 for 9 months up to a few months ago. I honestly on any dose felt like I was going to die of fatigue. I kept persevering but then made a decision to go back to armour with t4 added. I am on 1 grain plus 75mcg of tirisont (t4) and although I still have symptoms I am a lot better on this. My body seems to need a bit of everything to feel more balanced. I attempted to go up to 1 1/4 grains a while back and felt like I was going to have a heart attack.

MartinaM profile image
MartinaM in reply toAjva

Great, glad you found your right way 😍

Brightness14 profile image
Brightness14

I started on just 1/4 grain of NDT to start with twice a day. Then after 10 days or so I raised the morning dose to half a grain and so on. I was on 2.25 grains of NDT for over seven years and felt well. I grain in my opinion is too much to start with. Can you split the 1 grain up.

Geography1 profile image
Geography1

Hi Martina, I also have Hashimotos and I tried taking NDT for 3 years with no success, every time they would raise the dose, even if it was a small increase, my anxiety and other symptoms were intolerable, and I really wanted it to work, after reading Broda Barnes and many successful stories, but it did not work for me. I tried NP thyroid and Armour, 3 years of misery, my TSH has gone up the roof and I ended up extremely hypothyroid and could not even regulate my temperature to the point that my fingertips were getting blue with cold environments, that’s when I decided to change to Synthetic Levothyroxine, I tried the generic and gave me some bad stomach issues, then they switched me to Synthroid and it was a whole new world, it’s been 3 months and I feel great, I started with 25, I’m on 50 now and have to go back in August to check levels, I have to mention that I am extremely sensitive to everything and this is what is working for me, I say it’s worth a try to change to just T4 and see how you feel, everyone is different. I wish you luck 🤗

MartinaM profile image
MartinaM in reply toGeography1

Thank you for your story ❤ yes, today I started 25mg of just T4 and I feel better,I will see how it goes :) I am sensitive too, know what you mean..

HistyFit profile image
HistyFit

usually with those symptoms it means your dose is too high. If it only happens a little then give it a week or two. If it happens a lot ask to lower the dose.

KathFrances profile image
KathFrances

Hi - yes, I get palpitations and anxiety if I take too much NDT although I'm not hyper (iron and adrenals tested and ok). Through trial and error I've found the combination of Levo and NDT that works for me - I take half a NDT plus 25mg Levo (half a 50mg tab) in the evening before bed and 25mg Levo in the morning before breakfast. I've done a lot of experimenting with different doses and different timings to get to this point - I think it's quite an individual thing.

whyz68 profile image
whyz68

I took NDT for 15 years with no problems. After being overdosed on it, I haven't done well with it, but I can't drink caffeinated drinks anymore either. I'm guessing my issue is adrenal related, although my tests came back normal. The T3 in NDT may be too stimulating for you. Try Levothyroxine (straight T4) and see how you do with that.

MartinaM profile image
MartinaM

Yes, I did :) thank you

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