Stopped taking NDT thyroid

[Monika4]

Hello, could you share your experiences if you tried stopping thyroid hormone replacement? I was on NDT for years, developed hyperthyroid symptoms +very low TSH (normal ft3 and ft4), had heart arrythmia and high blood pressure, lost a lot of hair. Taking NDT didn't help with my weight problems or other problems I hoed it would. Before that, with lower dose of NDT I also had problems. I decided to try living without NDT, because I've read that several people tried that and succeded. I halved the dose and then stopped taking it.

My innitial TSH was 0,001 on NDT. 1,620 one week after stopping NDT (2 weeks ago) and today 12000 !!! I know it looks dangerously high, could it affect my other organs, not only stimulate my thyroid?

I am very scared of this number, I didn't expect it to be so high. But other than that I feel good. Also - my blood pressure normalized and I no longer have arrythmia. I expected TSH not to go so high, because supposedly it doesn't start working well after years on NDT. 2 weeks ago I started taking kelp (150 micrograms of iodine in one tablet a day), selenium, black cumin oil and zinc to support my thyroid. Could they affect TSH levels in lab tests? My body temp is 36,1C (higher by 0,2-0,3 than on NDT), my saturation is 98%, heart rate 70-80 during the day, 58-64 right before sleeping. I don't feel tired, do long walks every day. My weight didn't change much during last few weeks, it even reduced slightly.

Today's blood tests showed that my thyroid started producing hormones on it's own. The results are higher than 2 weeks ago, when I still had some NDT leftovers circulating in my blood. FT3 1,39 (2-4,4). FT4 0,33 (0,93 - 1,7). Please don't tell me to go to ER, I have anxiety neurosis. Do you have any links to studies of people who stopped taking thyroid hormones and they tested their TSH? I know some people are advised to stop taking those medications for weeks before thyroid scintigraphy. Excuse my mistakes, my English is not very good.

[Lalatoot]

I can tell you from experience. When you stop taking thyroid hormones you feel really good. Symptoms disappear and you feel that you made the right decision.This can last for many months then slowly, and sometimes so slowly you don't notice, symptoms creep back.

It was high anxiety and a puffy looking face that told me things were wrong. I got blood tests and my TSH was very high and my thyroid hormone levels were very low below the normal range. I became very ill. It took me 2 years to recover .

The increase in your levels will be the effect of the iodine in the kelp. When you start taking kelp hormone levels rise but then it can start to cause problems and really affect your thyroid. This article explains that

sps.nhs.uk/articles/using-k...

[Monika4 in reply to Lalatoot]

Thank you for your reply. Did you test your hormones during those 2 years after you quit taking hormones to see how your thyroid is functioning or did you just quit taking the homones and hoped everything will be fine without blood testing? What I mean is do you think you could have cought the hypo comming back earlier in another way, other than seeing the symptoms showing again?

Can I ask you why did you start taking hormones in the first place? From what I've read - perhaps the doctor prescribed them to me unnecesarly. My TSH was around 8, but my FT4 was in range in 2008, when I was diagnosed with Hashimoto's.

The only thing that really scares me now is the TSH, everything elese is going even better than I expected, even the FT3 and FT4 test results. And thank you for the link, I'll educate myslelf about the iodine influence on the thyroid. I don't take high doses though, it's like less than 2 sushi rolls, or something like that, isn't it? It was also recomended by people who succesfully quit taking NDT.

I am not concerned about the symptoms slowly creeping back, I am worried about something very sudden that could happen right now because of the TSH 12000 blood test.

[Lalatoot in reply to Monika4]

My thyroid problems started because I supplemented with iodine for 4 years. It was in a multi vitamin.Up until then I had no thyroid problems and no family history of thyroid problems. My thyroid became disrupted and started over producing hormones. My endocrinologist could find no other reason for this other than the excessive iodine intake.

I ended up having treatment which killed off my thyroid.

I was not happy with my dose of levothyroxine so I decided to start afresh and build my dose up again. Which is where my experiment came in and I made myself very ill but it did tell me that I had really no thyroid function left.

Your results already show you are very hypo. I would be concerned if those were my results. I spent 2 years all but in bed and unable to go out when I became very hypo. I would hate that to happen to others.

[Monika4 in reply to Lalatoot]

I ended up having treatment which killed off my thyroid.

OK, that is an important addition. You didn't have a chance for the thyroid to work, because it was dead But you still survived 2 years without any hormone replacement? Like zero? Or did you start building up the dose again during those 2 years? Did you make blood testst at that time?

[Lalatoot in reply to Monika4]

No I survived 3 months. I was then very ill for 2 years when I started building up my replacement doses again.

You have hashimotos. You may not have any functioning thyroid tissue left.

[greygoose]

My innitial TSH was 0,001 on NDT. 1,620 one week after stopping NDT (2 weeks ago) and today 12000 !!! I know it looks dangerously high, could it affect my other organs, not only stimulate my thyroid?

TSH does not affect other organs in any way. But at that level, it is flogging your thyroid to death. Literally. And, even at that level, your thyroid is only managing a very feeble amount of hormone. Not enough to keep you alive long-term. You are very, very hypo. Thyroids do not regenerate. And, taking iodine won't help. In excess, iodine is anti-thyroid. You are right to be very scared, you are playing a very dangerous game.

[Monika4 in reply to greygoose]

Thank you for the response, @greygoos. I am considering taking a small dose of NDT now.

But at that level, it is flogging your thyroid to death. Literally.

In what way? I don't feel any difference, the thyroid is not enlarged, it is not warmer (TSH supposedly increaces blood flow and enlarges the thyroid).

Are there any studies available showing how quickly thyroid responses to changing TSH levels, and how fast TSH responses to changing FT4 levels?

[Monika4 in reply to Monika4]

My FT3 really looks that bad? FT3 1,39 (2-4,4) is life-threatening? I don;t plan staying in this state long term, only to see if my thyroid starts working normaly, for a few weeks.

[greygoose in reply to Monika4]

Yes, your FT3 really is that bad. Every single cell in your body needs T3 to function correctly. If there's not enough to go around, the body shuts down receptors in areas it considers non-essential - although it sometimes has a weird perception of what is essential and what isn't. But, as the level of T3 declines, more and more receptors are shut down. This is what causes symptoms. And, when it gets to the point that all the non-essentail receptors are shut down but there's still not enough T3, it begins to affect the heart...

Given that a euthyroid FT3 is around mid-range, yours is very low.

[Monika4 in reply to greygoose]

Could you direct me to the source of this information, that the receptors are shutting down? Thank you for your engagement, goose .

[greygoose in reply to Monika4]

No, sorry, no links. Been reading around the subject for 20 years and in that time had a lot of computers. Links tend to die with the computer!

[Monika4 in reply to greygoose]

Well, for many years there seem to be a scientific consensus about the life-long nessecity of taking thyroid hormones once you started. And for a few years now a new concept is emerging. They saw how harmful taking those hormones can be and estimate that many patients don't need it and could stop taking them. Check those links for instance:

thyroid.org/patient-thyroid...

That is a review of 17 studies that examined people who stopped taking thyroid hormones. "Overall, 37% of patients remained euthyroid after stopping medication."

medicine.yale.edu/news-arti...

"As many as 90 percent of those who take levothyroxine [Synthroid] may have been unnecessarily prescribed the hypothyroidism medication."

Scaring me what stupid thing I'm doing now is not helping me. And there will be many more on this forum, that will try to stop taking thyroid hormones - scaring them with your personal wievs on this subject won't help them either. You seem to be repeating things you saw somewhere, that don't have any scientyfic basis. I came here to talk about my worries. I didn't stop the NDT by myself, I consulted it with my endo, who agreed that we can try. He told me to make blood tests 6 weeks after I stop taking the homone, but I was curious and checked after one week and after 3 weeks.

[Jazzw in reply to Monika4]

We’ve discussed that paper here on the forum at least once, possibly more: healthunlocked.com/thyroidu...

Edited to add—yep, more than once. Also here: healthunlocked.com/thyroidu...

I’ll let the threads and replies speak for themselves.

[Lalatoot in reply to Monika4]

MonikaLow circulating FT3 reduces T3 in receptors which is what greygoose is saying. Low ft3 also reduces t4 to t3 conversion.

You'll find this discussed with the evidence here

google.com/amp/s/thyroidpat...

[greygoose in reply to Monika4]

Well, for many years there seem to be a scientific consensus about the life-long nessecity of taking thyroid hormones once you started.

Yes, but that's the medical profession getting it all wrong again. Starting thyroid hormone replacement does not kill off your thyroid, it just puts it to sleep. If, for whatever reason you stop taking it, the thyroid will wake up again and start making as much hormone as it is able. And here I'm speaking from personal experience, not " repeating things you saw somewhere, that don't have any scientyfic basis" - which, by the way, I find a highly offensive thing to say.

I don't know where you live, you don't share that information with us, but in the UK and most of Europe it is not easy to get a diagnosis of hypo and treatment. Misdiagnosis can always happen, of course, but it is highly unlikely except in the USA. So, I wouldn't take much notice of that article if I were you - unless you live in the US, that is. Do you really feel you were misdiagnosed?

The second link is also about the US, so not applicable to the majority of people on here. But, even in the US, blood tests don't lie. Blood tests will tell you if you need to be on THR.

Scaring me what stupid thing I'm doing now is not helping me.

I'm not trying to scare you - why would I bother? Just presenting you with the facts: if you are truly hypo you cannot come off THR because you cannot live without thyroid hormone. And not just for your sake, either, but for other desperate people who might read this thread, hoping they will think twice, do more research, be more objective...

scaring them with your personal wievs on this subject won't help them either.

But they're not my personal views. And I'm not trying to scare anyone. But, you've obviously reached the point now where you have no more arguements and so you're ressorting to personal insults. So, this is the last comment I will make on the subject.

[greygoose in reply to Monika4]

Over-stimulating a sick gland just hastens its demise. No, I don't have any links to studies showing anything of the kind, but I think the thyroid responds as quickly as it is able. Yours just isn't able. And it's really not going to get any better. The TSH responds more slowly. But, as with all thinks thyroid, it depends on the person. We're not all the same.

I have never heard that TSH increases blood flow nor that it enlarges the thyroid. I don't know why it would do that.

[Jazzw]

Monika4

How much NDT were you taking each day before you stopped? How many grains/milligrams?

You say you had normal FT4 and FT3 with a low TSH. A low TSH with normal FT4 and FT3 levels means you were not overmedicated. The symptoms you were experiencing were therefore not due to overmedication. They could be due to low iron levels, low Vit D, low B12 etc—did you rule those things out before stopping your NDT?

I know the temptation to stop taking thyroid medication. I’ve done it—quite a few of us have—but for the majority of us it ended in disaster, with us feeling ill for many weeks after abandoning the experiment. Most people feel better to start with—then suddenly feel very unwell indeed.

[Monika4 in reply to Jazzw]

How much NDT were you taking each day before you stopped? How many grains/milligrams?

3 grains for a few years back, 2 since June 2023, and 1 since September. I think I was overmedicated - blood tests were taken before I took NDT in the morning, which I think was the mistake ordered by my doctor. Perhaps it was a mistake on my part to go from 1 to 0, I should have tried lovering the dose more slowly maybe.

I already did B12, vitamin D and iron, ferritine. And many more to check before stopping NDT, like adrenals and other hormones, selenium levels, zinc, insuline resistance test, I don't even remeber all at the moment. The only thing that came back wrong was my kidney results - slightly worse, than they should be, probably from high blood pressure jumps (as doctor suggests).

Thank you all for coments, I need to digest a lot of your feedback before answering to all and think about what to do next. My anxiety doesn't help with all that and I'm worried it could affect my blood pressure again, which can be dangerous.

[Jazzw in reply to Monika4]

Like I said, many of understand the thoughts you’ve been having, about whether you’d feel better without the thyroid medication. But it’s incredibly rare that stopping meds turns out to be the right thing to do.

As for taking blood tests before taking NDT—that’s actually the right way to do it, otherwise the results are artificially skewed by the recently taken thyroid hormones.

For your TSH levels to jump so dramatically, I personally don’t think you’re going to be someone who can manage without thyroid hormones. I know that’s sad and frustrating to hear but unfortunately that’s just the way it is for most of us. Your thyroid gland is probably already far too damaged to cope.

[Gingernut44]

With your TSH so high and your FT4 and FT3 both below range after only three weeks, just imagine what the levels will be in another three weeks. It’s all very well your Endo agreeing with you stopping your NDT but it’s your body and health that’s affected not theirs.

[Monika4 in reply to Gingernut44]

T4 half-life is around one week. That means if someone stops taking thyroid hormone, after one week would still have about half of it circulating in blood. Depending on how hypo/hyper this person is, it takes weeks to have 0 of it left in blood. As suggested by many sources - 3 weeks on avarage. So right now, after those 3 weeks since my last pill, my body realizes what is going on. And it started producing T4 and converting to T3 on it's own, as blood test results show. The levels are low, that is true, but they were expected to be low at this moment. According to my doctor and studies - in the comming weeks they should rise (assuming my thyroid can produce enough of them - that is what I'm trying to find out).

In contrast - TSH half-life is around 1 hour, so it disapears from the blood fairly quickly, even huge ammounts are reduced quickly if it's needed. That seems to be a very clever mechanism - the thyroid won't be overly stymulated for a long time, once it starts producing enough thyroid hormones.

Anyway - after a very stressful night, when folks here scared me that I'm killing myslef, I woke up to a message from the lab that they want to repeat my blood panel because of the "software error". So I already went and gave my blood again and the results should be ready today in the evening. I feel normal and have no symptoms of hypothyroidism other than those I had when on NDT. Maybe one - I feel colder in the evenings, but it could also be because the winter just started with minus zero temperatures and because I've changed my diet to almost plant-based and lost a few kg during last couple of months.

[Jazzw in reply to Monika4]

No one here said you were killing yourself. We simply shared our experiences of having done what you’ve done and shared our thought processes about what can happen when you stop thyroid medication after many years of taking it.

I hope my experience isn’t your experience and that things work out for you.

[Monika4]

Hi, sorry for not answering to all the new messages, there is a lot going on in my life and I need some sleep tonight. As I mentioned earlier - the blood tests were repeated today. In the morning I got a text message from the lab, that there was a mistake and they need to make them one more time. FT4 and FT3 are very similar to yesterday's, but TSH is less than 10 . Which is a huge relief, because this number looks more normal. It is also a big relief for me, that my TSH stimulating mechanism is working. I've read that after years of supplementing with thyroid hormones it can be suppressed for a very, very long time, even years. If nothing sudden changes I'll probably do another blood test next week. I'll try to update this thread for anyone interested in reading it. I am also very well aware that my experiment might fail and I may be hit with severe hypothyroid symptoms or other unexpected, but related health problems. I never expected, that I'd just quit taking NDT and feel fantastic for the rest of my life. But I'd like to try, with the help of my doctor, not turning away from medicine. And doing regular blood tests and thyroid ultrasounds.

[Hidden]

I wonder if people with Diabetes 1 experiment by not taking any insulin, hoping their pancreas will come back to life.

[Monika4]

Hi all. I'm not sure if I should start a new thread, but just a quick update for anyone interested. I'm doing great. No worsening of symptoms, my body temperature is now much better than when I was on NDT (around 36.6 C almost every day). My ft3 and ft4 levels are back in a normal range, TSH is still too high, but with every test I make (I try doing them every 2-3 weeks) it gets lower. It is also lower than many years ago when I was diagnosed with hypothyroidism.

Since 1.11.2023, when I stopped taking NDT I managed to loose almost 10 kg (still about 15 more to go, but feel very optimistic about it and feel that I can make it this time). I'm on a healthy diet of vegetables, tons of legumes, fruits, whole grains, nuts, seeds, meat, fish, eggs. Limited diary, don't use any oils or butter, sugar, I don't eat any processed foods. I eat my "normal" kcal requirement every day and create a caloric deficit by taking very long walks (usually 2h + 1h walk every day, I don't do other exercises other than walking ) to loose weight. Started using iodized salt, after years of using salt without iodine. I sometimes supplement with kelp, tyrosine, selenium, zinc, but not every day. When I stopped taking NDT I took them every day, now I take them like once every couple of days. I also checked my iron, B12, zinc, A and E vitamins, selenium and iodine levels to make sure they are ok. I take cod liver oil (with added E, for Omega3, A, D3) and K2 every day. Not sure what else to writ Oh, I also try to sleep at least 7 hours a day and work on lowering my stress.