Hashimoto’s and NDT - How Do You Feel?

[CDN_Lady]

Hi Everyone,

I am thinking I would like to try NDT but have heard from my integrated practitioner that not everyone with Hashimoto’s feels all that well on NDT. I am wondering if anyone has first hand experience?

Thanks

[shaws Administrator]

Due to the fact that we're all different and, if you are in UK, they have withdrawn NDTs from being prescribed. Despite the fact that it was the very first thyroid hormones that saved lives since 1892 onwards. It is also made from animals' thyroid glands, so we get all of the hormones a healthy gland would produce.

The only way we can know whether or not a particular replacement suits us, is a trial of that product.

With NDT - no blood tests were required and it was all based upon 'how the patient felt' on a particular dose and there were small add

Maybe your practicioner isn't fully knowledgeable as in 1892 there were no blood tests available and patients were given small doses until symptoms resolved and they stayed on that dose. NDT was the only replacement then.

[CDN_Lady in reply to shaws]

Thanks shaws I do realise it is a very well established treatment, been around for donkeys years, and yes lots of difficulty sourcing in the U.K. It probably won’t be easy. But maybe not impossible? Yes I live in the UK now but did use NDT when I lived in Canada. However at that time I didn’t have Hashimoto’s and wondering whether it is worth another try if I can find it here. And perhaps how others with Hashimoto’s have felt on it vs levo and liothyronine.

[shaws Administrator in reply to CDN_Lady]

Anything is worth a trial as what suits some people may not suit another.

It is 'hit and miss' at times and we might, finally, find one (or a combination) that makes us feel well again and relieves symptoms.

Quite frankly I have no idea why the 'supposed to be experts' who do not have a dysfunctional thyroid gland can make decisions that can severely affect - mainly females - who have a dysfunctional thyroid gland and aren't improving.

I think they should have on their organisations people who've suffered and then have restored their health - despite the guidelines laid down - by taking 'optional' thyroid hormone replacements.

I have read a woman's Last Testament for the coroner of why she could no longer live. Does that not touch anyone's hearts? Seems not to.

[CDN_Lady in reply to shaws]

So sad and I agree with you 1000%. No one takes us seriously. Life is hard enough without the constant battle surrounding feeling better with thyroid disease. I just don’t understand why it has to be so difficult. Plus proper treatment for ty disease could prevent and save money on treatment for more serious health issues. x

[shaws Administrator in reply to CDN_Lady]

Once-upon-a-time (from 1892 onwards) - before blood tests were introduced , doctors knew all clinical symptoms, diagnosed upon them alone and we were given a trial of NDT (natural dessicated thyroid hormones) which was the first replacement given as before that we just died as there was nothing that could help.

[T3Indeed in reply to shaws]

It touches mine. I’ve not only had a lot happen in the past 2 months in my personal life, my health both emotionally and physically has been rapidly declining. I got a letter yesterday that the thyroid medication that I’ve been on for the past 2 1/2 months has been recalled, so I’ve been WAY underdosed. I’ve been feeling suicidal and now it’s worse because I haven’t had health insurance since my divorce, currently am not working and can’t afford to go to multiple doctors, again, trying to find someone to help me. I feel completely hopeless. No one should have to feel this way.

[shaws Administrator in reply to T3Indeed]

I am very sorry for predicament and sometimes life throws at us a bit too much for us to cope with.

It's helpful if we have friends we can rely upon to support us in difficult times but sometimes we want to keep things to ourselves. That's the good thing about the forum i.e. we remain anonymous and all of our members are very helpful - as much as they can.

I understand how difficult it is if we find ourselves in a predicament that doesn't seem to have a 'way out'. If we're suffering we cannot even begin to think of anything at all as our feelings have taken over and everything feels completely impossible.

However, that's one thing about this forum, you can let loose all of the things that are troubling you and I realise the No. 1 is that we get a sufficient dose of replacement hormones and that not everyone can afford a private consultation. Mind you some of the private doctors may also not understand what you're going through at present and some people think they've just wasted money.

I know this might sound easy but at least you have the support of other members on this forum, some who've gone through similar difficulties as yourself but have eventually found themselves to be stronger, despite all that hits them at that particular time.

I assume you're able to get some sort of thyroid hormone replacements and you might need a small increase in dose. Before blood tests were introduced, hypo patients were given a dose of thyroid hormones and it was gradually increased about every six weeks until the person felt an improvement with their symptoms slowly diminishing. If they felt dose was 'too much' they reduced to the previous dose.

Be gentle with yourself and maybe give yourself a little treat - you deserve one.

[grumpyold]

I took Armour for a year back in 2008 and felt great. I didn't know I had Hashi's at the time as I diagnosed that through a Medichecks blood test several years later.During the time I was taking Armour I managed to shift the 3 stone I had gained since I was diagnosed hypo in 1998. Unfortunately, my hair loss didn't improve though.

I only stopped the Armour because I could no longer afford to buy it.

I then tried Erfa which didn't suit me so well and finally Thiroyd from Thailand.

Not everyone does well on NDT but you won't know unless you try it.

x

[T3Indeed in reply to grumpyold]

You’re still getting it from Thailand?

[grumpyold in reply to T3Indeed]

No, not since about 2011. I have been on a sufficiently high dose of levo to facilitate optimal conversion to FT3 so I haven't had NDT for a long time.

[CDN_Lady in reply to grumpyold]

Thanks so much for your reply. I think, if I can afford to, will give NDT a try

[serenfach]

You know that ad where two toys are using batteries, and one stops, but the other carries on because its batteries are better? On T4 alone, I was the first toy, on NDT I am the second toy...

[CDN_Lady in reply to serenfach]

Love it! I am on levo and T3 but am still symptomatic and can’t lose weight. I am hoping NDT will help. A bit worried about the transition period though. Thanks for your reply

[Hidden]

Hey, I can only speak from my own experience as I have taken levo only, synthetics t4 t3 and NDT. Unfortunately on synthetics both t4 t3 I felt unwell and went up and up until my ft3 ft4 were both high, took me 18 months, it was awful, gained lots of water weight too. Back on NDT since September, still tweaking, but it is so much better than the rest and more gentle. I am still torn if I need to add a bit more levo to my Armour still, because I don't do well with very low ft4. You can always try, I definitely am better on NDT.

[CDN_Lady in reply to Hidden]

Thank you Swampyswamp for sharing your experience

[T3Indeed in reply to Hidden]

Which NDT brand are you taking? I’ve been on NP Thyroid and have been very ill fir the past couple of months. I got a letter today that it’s been recalled. I don’t know what to do or what to try to get to treat my Hashimoto’s, now. My health is rapidly declining every day.

[helvella Administrator Thyroid UK in reply to T3Indeed]

Have you contacted Acella?

Consumers with questions about the recall can email Acella Pharmaceuticals at [e-mail] or contact our representatives at 1-888-424-4341, Monday through Friday from 8:00 am – 5:00 pm ET. Consumers should contact their physician or healthcare provider if they have experienced any problems that may be related to taking or using this drug product.

fda.gov/safety/recalls-mark...

[T3Indeed in reply to helvella]

Thank you for replying to my post. That’s for questions about the recall. It says to contact your healthcare provider if you’ve had any problems related to taking this medication. I don’t currently have a healthcare provider. Ive been laying here crying for 2 hours. I don’t have the strength to keep going through this.

[helvella Administrator Thyroid UK in reply to T3Indeed]

I thought it possible that Acella would have some sort of exchange program in place? Seems worth trying.

Sorry about rather assuming you have some sort of healthcare provider. Not being in the USA, I rather thought that you'd have to have one in order to be prescribed the product at all.

[T3Indeed in reply to helvella]

I had one. She was upset when I contacted the other physician that she’s in practice with, in order to see if he would take over the management of my thyroid, because she rude to me on several occasions. I never said why I wanted to switch. After doing so, I was contacted by her nurse and told that they were in practice together and did not switch back and forth between patients, and that I should find a physician “closer to where I lived to treat me”. I was fired as a patient for asking to see the other physician. She never bothered to ask why I wanted to see the other physician or what the problem was. That’s how healthcare works in this country works. I used to order my own labs and purchase NDT from Thailand, after seeing many doctors here without ever getting any help. But, then the pandemic happened, and they stopped having it available. I’ve read where they have it back in stock, but I can’t find out if this is legitimate. I’m lost and tired of fighting. I appreciate you taking the time to respond. Thank you.

[Hidden in reply to T3Indeed]

I take Armour and a bit of Levo

[T3Indeed in reply to Hidden]

I don’t know where to purchase Armor. I used to purchase NDT from Thailand

[Hidden in reply to T3Indeed]

I have it prescribed to me by my endo, I get it from a pharmacy. Have you checked online?

[T3Indeed in reply to Hidden]

Yes, but I’m not sure if the site is legitimate. It’s not the one I used to order from.

[asidist]

my experience was very diff than others who have posted - i recently did a 7 week trial of armour and it made me feel very ill, including a strange sensation in my throat that felt almost like acid reflux. i couldn’t tolerate a dose that was equivalent to what i was taking in synthetic t4/t3 prior because the sensation in my throat would get stronger with higher doses. almost all my problems pre-t3 returned and worse than ever by the end of the trial (menstrual issues, hair loss, mood, energy, etc etc) - tests showed that my TPO and Tg antibodies shot up about fourfold by the 7 week point. never getting near NDT again! should mention though that I have lots of atypical allergies and reactions (in fact I’m allergic to take T3 and have managed with antihistamines), so I may be an outlier. hope your experience is better.

[CDN_Lady in reply to asidist]

Thank you asidist. Good to know that it doesn’t work for everyone. x

[radd]

CDN_Lady,

Have you medicated T3 before?

When introducing NDT it is important to keep TSH low so discouraging thyroid activity and a possible attack, but because of the set amounts of T4/T3 in NDT there can be no titivating of individual hormones. If you have high levels of antibodies (indicating high inflammation) but haven’t medicated T3 before it can be difficult to raise NDT quickly enough to keep TSH low.

Also, it may be that the amount of NDT required to keep TSH low enough is more than the amount your body needs replacing just because of high inflammation in your body. NDT can also be more intolerant of the things low thyroid hormones can induce, such as low iron levels and unbalanced cortisol.

I have Hashi & successfully medicate NDT, but I medicated T4 & T3 for a year before so could introduce T3 in slow & low amounts, and then did a straight switch.

[CDN_Lady in reply to radd]

That’s good advice, radd. I have tried it before but not Hashi at the time as far as I know. I am currently taking levo and T3. Still have symptoms of hypothyroid - cold, low temp and pulse. I do have lots of inflammation-due to have blood tests next week to check inflammation markers and TSH as that’s only blood test GP will do. Will probably need to get private ty tests to get full picture. Knowing what you know now would you change anything in your transition? Thanks for sharing your experience. x

[radd in reply to CDN_Lady]

CDN_Lady,

No, the switch was easy but having read some of the difficulties other members have experienced, I believe this only so because I had already addressed nutrient deficiencies, gut issues, iron overload, cortisol imbalances and inflammation.

I am on an anti- inflammation drive at the moment 🤣 because of the extraordinarily negative influence it can have on deiodinase behaviour and thyroid function parameters.

Another member posted this, can't remember who but it supplies a good simplistic explanation and refers to how destructive inflammation is.

9gurus.com/how-deiodinase-e...