How to stop thyroid NDT medication

[ujohanne2009]

Currently on 2.5 grain NDT and will stop taking any thyroid medications. Better going down slowly or rapidly to get the HPA axis re-activated?

Thought about going down 1 grain per week?

[SeasideSusie Remembering]

ujohanne2009

Why would you stop taking your thyroid medication?

[ujohanne2009]

All relevant blood values have been checked lastly. Which ones would be of interest?

Why I stop:

-Side effects of L-Thyroxin & NDT

-not possible to get stable fT3 and fT4

-both have been in the range (fT3 = 40%) without hormones before but TSH was at 5

-a natural treatment was never a choice

[shaws Administrator in reply to ujohanne2009]

Blood tests are o.k. but were introduced along with levothyroxine (T4 only) but do not forget clinical symptoms as it is these that we find difficult to cope with and replacement hormones should relieve.

Blood tests were introduced along with levothyroxine alone, therefore as it is T4 only, when we take NDT or add T3 to T4, the blood tests wont correlate. It is our symptoms that become the best way to judge. The aim is to get our dose to an optimum, i.e. we feel much better and symptoms resolved. Small adjustments can be made. Before blood tests were invented we were diagnosed according to symptoms alone and given NDT (from 1892 onwards) Before that we died.

No blood tests had been developed before the introduction of levo and all the emphasis was always upon relief of clinical symptoms by small increases of NDT.

The following link is by an doctor/scientist who was also an Adviser to Thyroiduk before his death caused by an accident. He only took one blood test for the initial diagnosis and thereafter it was all about symptoms (being relieved).

Dr Lowe would never prescribe levothyroxine and took one blood test for the initial diagnosis - thereafter it was all about relief of symptoms.

naturalthyroidsolutions.com...

Your NDT dose is around 250mcg of levothyroxine (T4). Some people who are 'thyroid hormone resistant can only recover on T3 alone.

At present your dose is equal (approx) to 250 mcg of levo.

[ujohanne2009]

With 2.5 Grain of NDT the values are currently

TSH: 0

fT4: 0.9 ng/dl (-4%) / 1 year ago: 57%

fT3: 3.1 pg/ml (45%) / 1 year ago: 142%

Other values currently:

TPO: 80 IU/ml (5 years ago: 170, Thyroid volume did not change during 3 years)

Ferritin: 133 ug/l

Selenium: 127 ug/l

Zink: 149 ug/dl

24h saliva Cortisol is too low in the morning and evening last year.

Iron urin test was 75% last year.

[ujohanne2009 in reply to ujohanne2009]

Iodine not iron!

[Wolfiesmom08]

I would not recommend stopping completely I would try transitioning to T4 and T3 I could not tolerate NDT my body just needed more T4. I tried cutting my dose in half a few years back because I thought it was giving me headaches and it was one of the worst things I could’ve done. It caused my body to make adrenaline because it didn’t have enough thyroid and it sent me into a mental break down practically with extreme anxiety shaking etc. it took me weeks to realize I needed more thyroid not less to feel better and as I raised it I regained my sanity.

[Hidden]

My experience stopping 3 grains of NDT 3 years ago...went from 3 to 0 as per poor advice of my doctor. I had to be hospitalised, then housebound for two months, apart from debilitating physical symptoms, I have suffered first from unbelievable anxiety, which led to crushing depression. 3 years later, I am still recovering, upping my dose slowly to get it back up to where it was. My hpa axis did not recover, my tsh was low and all fts were low too. Don't do it to yourself, decrease very slowly if that is what you want. If you are values are falling in comparison to two years ago, why would you not increase the dose instead? Your antibodies have reduced since taking NDT as well. My doctor was so concerned about my extremely low TSH 3 years ago, took me off everything completely, I thought I was dying and losing my mind at the same time.

[ujohanne2009 in reply to Hidden]

Thanks for sharing your tips and experiences!

My comments to that:

My doctor was not aware about the treatment of a subclinical hypothyroidism. I just went to check blood as I was curious in 2015:

- TSH: 5,4 mlU/l

- fT4: 12,1 ng/l

- fT3: 3,0 ng/l

- TPO: 170 U/ml

I felt well before I was adviced to take thyroid hormones and never developed a clinical hypothyroidism since now.

2. I already stopped thyroid hormones 2 years ago, what worked out fine. But then I made an uneducated decision and got a wrong advice from my doctor to get back to NDT.

I just wanted to get some best practices out of this forum to do it better this time stopping it.

(I went back to hormones because I started to feel tired after 5 months without it. Today I know that this was just the effect of low ferritin).

3. To Cuppaofcha:

TSH is in most times close to 0 with enough NDT, what most doctors do not know. I hope you did not just stopped taking it from 3 grain to 0 immediately. Of course the HPA axis is not starting again so quickly. If it is not starting back after some weeks there is an issue with the hypothalamus I assume.

4. There are so many natural ways to get your fT3 higher than just taking hormones when there is not a serious pathological issue. I don't understand why it is always the very first advice to take L-Thyroxin or other, when so many people suffer from side effects. Thinking about increasing the fT4 to fT3 conversion, treatment with iodine, selenium, L-Tyrosin, Cordyseps and other, lifestyle changes (stress, drugs, diet), you name it...

I'm happy to share my best practices here in this forum in some months.

[Hidden in reply to ujohanne2009]

Hey there, to the point addressed at me, I have stopped everything as I believed that I was severely overmedicated at the time.

I waited 6 weeks with no medication, was checked in the hospital on admission, high levels of t3 that we take bring you TSH down sometimes indefinitely, same with levo. My hypothalamus is fine, my pituitary as well, no growth, other hormones are being produced, so no blunted axis, only TSH. I have tried every possible way to bring it back naturally to no avail.

My experience is that thyroxine is not enough and NDT didnt have good proportions for me of both hormones, so only a personalised combo of t3 and t4 is working for me.

Tsh of 5 according to my doctors is clinical not subclinical, both your ft3 ft4 were low in range. Of course if you are in UK where lab TSH range is up to 10, then that is terrible. I was diagnosed in Poland with TSH of 2, under midrange ft3 ft4 and antibodies for Hashis close to 1000.

Whatever you do, do it slowly, reducing. If you have stopped before, and it worked, then you know what to do best of luck!

[ujohanne]

Hello to anyone with hypothyroidism,

I just wanted to finalize my post here for the once who are interested what I've experienced when stopping my thyroid medication that I've took for 5 years at that point of time.

Beforehand: Please don't take my example as an advise to stop your medication! (Probably most of you did not felt healthy before taking LT as I did).

To your information I made the experience with once stopping Levothyroxin, restarted with NDT (thought I was hypo but experienced iron deficiency), then tried to stop NDT medication as well. The comparison is that stopping NDT was way different to LT, i.e. much more difficult...kind of coming off from a drug.

Background why I went through this:

In my early 30th I went to my doctor to make a blood check in order to get the confirmation that I'm healthy - AS I FELT HEALTHY! To my surprise the doctor came up with the conclusion that I need to take LT (low thyroid blood values, damaged thyroid ultrasonography, slight TPO antibodies). Then, my life quality started to reduce by taking LT due to its side effects, especially sleep problems.

When I've decided to get off NDT I tried to google any experience from others but couldn't find anything. So I made myself the plan to reduce the 2.5 grain gradually:

1st week 2.5 to 1.5

2nd week 1.5 to 1.0

3rd week 1.0 to 0.5

4th week 0.5 to 0.0

Conclusion after 4th week:

If I would have to do this again I would rather use months as a point to reduce the dosage rather than weeks as my energy levels got massively reduced:

I got a slightly puffy face and cold fingers even on a sunny day. I also felt like not getting woke up completely. I lost hairs. A pain started to begin in the area of my thyroid / laryngeal. The lowest measuring of oral body temperature after waking up was 32 degree celcius. My TSH started to increase from 28 to 42 to 133 during the first 3 months. FT4 reduced to -75% of the range, same time FT3 -20%.

I stopped sports and my social life for a while to come along with the rest of energy I had.

How it went on:

Beginning with the 5th week I felt that my body very slowely changed towards reducing the above described symptoms. However I feared the situation with the low FT4. So I started to take L-Thyroxin 25 mcg in order to prevent any potential serious health situation. However my thoughts were to not take more LT as the TSH should anyway continue to fire at my thyroid hoping it restarts to produce more T4. To be able to slowely get back into my social life I tried to use a tiny dose of Thybon (FT3) for rare situations. I felt like it supported my energy level a little bit for a few hours.

Conclusion after 3 months:

My plan seemed to start working out. I felt much better even that the blood values were very low. One reason was that my sleep got better which was one of the major side effects of LT + NDT.

Conclusion after 6 months (still today 1.5 years later):

Quiet a good feeling, some energy lows here and there, especially after lunch. Getting a coffee or a nap afterwards helps. Sleep is not always good, depending on the level of stress during the day. So all in all a condition I can live with without having to take LT.

FT4 got back to 35%, FT3 to 55%, TSH to 6, oral wake up temp. 36,6 celcius