Hashimoto's and NDT: I just had a doctor tell me... - Thyroid UK

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Hashimoto's and NDT

teenarocks profile image
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I just had a doctor tell me that you should not use NDT if you have Hashimoto's because you are putting thyroid tissue into your body and your body is programmed to attack it. It kind of makes sense to me but I know other doctors recommend NDT over synthetic hormone. Has anyone else heard of this?

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teenarocks
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Clutter profile image
Clutter

Teenarocks, yes there are conflicting views on it. Some Hashi patients don't do well on NDT for that reason but many others are fine.

teenarocks profile image
teenarocks in reply to Clutter

Thank you, Clutter. I've been on it for two months and so far I'm not doing very well. But I don't know if it's because I'm reacting poorly to the NDT or if it's because I'm not getting enough of it yet. After one month my TSH was over 14 (0.5-4.5). I increased by 1/4 grain and am waiting for latest blood test results.

Clutter profile image
Clutter in reply to teenarocks

Teenarocks, you obviously aren't on enough to have TSH 14. How much are you on now and how much T4 were you on before you started NDT?

teenarocks profile image
teenarocks in reply to Clutter

Now I am on 1 1/4 grain or 81.25 mg. but I haven't received the lab report from the test I just had done. Waiting on that. It was over 14 when I was on 1 grain (65 mg.) for a month. Before I started NDT I was on 100 mcg. Synthroid.

shaws profile image
shawsAdministrator in reply to teenarocks

I am sorry your TSH is still high and you're not feeling so good.

1 grain of NDT is equal in effect to 100 mcg levo (as it contains T3).

You obviously need an increase and I think go up 1/4 gr every few weeks till you feel well. Any overstimulation, you should drop down to your previous dose.

stopthethyroidmadness.com/m...

This is one excerpt:

AVOIDING NDT BECAUSE YOU HAVE HASHIMOTO’S Sadly, some doctors will state that those with Hashimoto’s should avoid NDT because it can increase the attack. It’s true that at first, antibodies raise, say patients. But the higher they raise, the lower antibodies become, as reported by many, probably due to a better immune system due to the T3! A large body of Hashi’s patients need to avoid gluten to get those antibodies down. Others use 200 – 400 mcg selenium to lower antibodies, while more difficult cases may need Low Dose Naltrexone. Many even report that their iodine use lowered their antibodies.Overall, Hashi’s patients have soared with NDT if they do it right,

teenarocks profile image
teenarocks in reply to shaws

Thank you for this. I wasn't sure if raising 1/4 grain at a time was too much as I did that without doctor's advice. So I'm reassured I did the right thing.

Clutter profile image
Clutter in reply to teenarocks

Teena, 1 grain is roughly equivalent to 75mcg-100mcg Synthroid. Were you undermedicated on Synthroid?

teenarocks profile image
teenarocks in reply to Clutter

I don't think so. The WP Thyroid website conversion chart says 100 mcg. Synthroid is equivalent to 1 grain WP Thyroid.

Clutter profile image
Clutter in reply to teenarocks

Teena, that's their 'safe' estimate. In reality people often find it is closer to 75mcg. It shouldn't make such a difference to elevate your TSH so much so perhaps your TSH was already rising on Synthroid.

teenarocks profile image
teenarocks in reply to Clutter

Probably was. I'll get the new TSH test result tomorrow. I think I am still undermedicated on 1 1/4 grain as I'm still having symptoms.

teenarocks profile image
teenarocks in reply to Clutter

Just got the new lab. Only TSH. One month on 1 1/4 grain WP Thyroid. 1.03 (.45-4.5) I think I'm going to raise to 1 1/2 grain on two days a week and retest in a month.

Clutter profile image
Clutter in reply to teenarocks

Teena, the T3 in NDT usually suppresses TSH so don't think you are overmedicated. If you're symptomatic try 1.5 grains daily.

Looks like you may have had quite a Hashi flare for your TSH to rise to 14. Suppressed TSH may help prevent future flares. Some members have found it can take up to 6 months to feel well on NDT so don't give up on it too soon.

teenarocks profile image
teenarocks in reply to Clutter

Thank you so much!

humanbean profile image
humanbean

This page may be useful to you - it is worth reading it all :

stopthethyroidmadness.com/h...

Hypopotamus profile image
Hypopotamus

Another Hashi's man here and on NDT and doing very well on it whereas Thyroxine and Liothyronine didn't do anything for me.

Ask your doctor if the immune system attacks the thyroid gland or the hormone. ;-)

teenarocks profile image
teenarocks in reply to Hypopotamus

Good question! Thank you. I'm not sure NDT is going to be the right thing for me, but time will tell. It's just difficult to be patient with time!

greygoose profile image
greygoose

I didn't do well on NDT, and I slowly increased to 6 grains. I have found that I'm better off on T3 only.

But your doctor shouldn't make sweeping statements like that, because we're all different and some people do very well on it. The doctor that prescribed NDT for me had Hashi's himself, and was doing remarkably well on NDT. Only natural that he thought I should try it. But it just didn't suit me, so...

Hugs, Grey

teenarocks profile image
teenarocks in reply to greygoose

Thanks! I'm glad you found what is right for you.

greygoose profile image
greygoose in reply to teenarocks

Trial and error, teenarocks, trial and error. That's the only possible way.

Ali_r profile image
Ali_r

I found that even a small dose of NDT (half a tablet every other day of Nutri-Meds - Pig- 130 mg ) or T3 (Cynomel) caused horrible tinnitus. Took weeks to return to near normal levels. I gave them up rather quickly.

I'm intrigued by Teenarocks and Shaw's discussion on T3 causing rise in antibodies and an attack on the immune system (also Clutter's comment elsewhere on this site healthunlocked.com/thyroidu... ).

I also am gluten intolerant and have rheumatoid arthritis, which is improving slowly with changes to diet. I'm due to see an endo in February, but am intrigued why NDT and T3 might be having such an effect on me. Does anyone have any other thoughts? Or recommended research papers to read?

Thanks

Wattsea profile image
Wattsea

Just found this post and I think I am having problems with NDT Armour (for the past 14 months). I had done well on NDT for nearly 20 years but now it doesn't seem to be working. I started getting bad right sided headaches which I also felt behind my eye. I have mild tinnitus all the time and eventually I found swallowing a bit difficult, finally I lost a lot of hair last September. I then read another post about symptoms with excess T3 (similar to mine) so I stopped the Selenomethionine (which helps with conversion of t4 to t3. The swallowing has improved nearly to normal and the headaches are fewer. The tinnitus is still there as is a slight tremor and arrhythmia. I have tried to increase my dosage from 105mg to 120mg but I feel very hyper and can't stand it for more than a week. Is it possible my body is attacking the NDT and I should move to synthetic thyroid meds?

Thanks for any guidance. P.S. I have dr appointment on Monday for THS, T3, T4 and FT3 on Monday to try and get to the bottom of this problem.

teenarocks profile image
teenarocks in reply to Wattsea

Wattsea, as you can see this thread is two years old. As it turned out I did not do well on NDT. I switched to synthetic T4, T3. I am now taking Levoxyl and Liothyronine. However it has taken all this time and a lot of coaxing to get my endo to slowly increase to what I now believe is finally my optimal dose. Of course, this also could be temporary as who knows if I will need an increase or decrease in the future. Your tinnitus, tremor and arrhythmia are certainly concerning. It sounds like you are overmedicated. Your new test results will shed some light on it but I wouldn't discount how you are feeling. One advantage to not using NDT is you can manipulate the T4 and T3 individually. I've found this to be better for me.

Sunseeker1988 profile image
Sunseeker1988

Think about the logic behind "don't take t3 becasue hashimotos patients are putting thyroid tissue back into their body, so your body will attack it." Taking t4 so your thyroid produces the same Thyroid peroxidase responsible for the t4 to t3 conversion will cause a hashimotos attack hence the test for anti-TPO (anti-thyroid peroxidase). Hashimotos specifically attacks the peroxidase enzyme in the conversion process. It does not attack your thyroid tissue, it attacks the enzyme for conversion and inadvertently damages your thyroid tissue in the process. Under these doctors logic that taking NDT with "thyroid tissue" in it will cause an attack makes no sense since under their t4 only regimen, your thyroid tissue is STILL there, but NOT being attacked?

Its the lack of understanding how hashimotos works that has me worried about the treatment plans for people. If you have hashimotos your antibodys SHOULD go down from NDT because your are supply t3 into the body which suppresses TSH because your hypothalamus goes " I guess theres no need to call the thyroid up and have him start converting t4 to t3 for the body" thus stopping the peroxidase enzyme from being made to aid in the t4 conversion process. and a lot of hashi PT will feel WORSE on t4 only because the very medicine responsible for the process that is destroying their thyroid in the conversion of t4 to t3 is the only medicine they are taking. You will feel the inflammation leave your thyroid on the right NDT dose.

Remember, hashimotos CAUSES hypothyroidism from destruction of thyroid tissue. hashimotos PT are not hypothyroid from a dysfunctional Hypothalamus or HPA axis, they get severe inflamation of the thyroid which hinders conversion of t4 to t3 and results in hyper spikes and tissue destruction, then hypo. NDT at the right dose will suppress your TSH level enough that it will not be calling for the conversion of t4 to t3 from your thyroid.

Some but not ALL people will do best on a TSH level below 1.0 with very bad cases of hashimoto. The closer to 0 with providing the right amount of t3 will stop the thyroid from producing the one thing that causes a hashimoto attack on it which is Thyroid peroxidase conversion of t4 to t3 caused by TSH levels calling for the conversion to bring your blood levels up to normal ranges.

Remember, TSH levels are their to TELL your body that THEIR IS NOT ENOUGH T3 in it therefore anything OVER 0 indicates more medicine needs to be made. The plasma halflife of THS is 1 hour therefore when you get blood drawn, anything over 0 is calling for the conversion of t4 to t3. This is what doctors who say, you need to be in the "normal range" and claim 0 is over medicated do not understand. Close to 0 means you are almost near perfect replacement amount for your body that your hypothalamus never has to ask for conversion of t4 for the rest of the body.

you want to make sure you do not get to absolute 0 in my opinion as there is no way to judge if you get over medicated which has happened to me, unless you pay close attention to the symptoms. Its easy to gradually drift into being over medicated, forgetting how much more normal you felt on a lower dose. Its trial and error with dosing on NDT in my opinion.

You may do well on 3/4 grain NDT and a tsh of 1.5. it really is years of trial and error to find what your body likes. Don't let the internet tell you you have to be at 0 TSh or 3 grains is too low. I was on 2 grains for years and found out that I felt WAY better on 3/4 grain and a good diet.

These are my opinons and not medical advice.

Aunds profile image
Aunds in reply to Sunseeker1988

Hi Sunseeker1988. I’ve just read your response you seem very knowledgeable, I’m still floundering around with NDT topped up with T3, as I have a double mutation of DIO2 so I struggle to convert. I’ve found the NDT makes me put on weight super quickly. Do you know what the advantages are of combination of NDT and T3 verses just T3? Part of me feels if we have T1, T2, T3 and T4 there must, even if it’s not know be a reason why we have those - the other part of me feels I might be better off just on T3. If you have any ideas I’d like to hear. I have Hashimoto and anti bodies high, vitamin panels all good following a supplement review.

I’m also not sure what ‘good’ blood results should look like if I’m taking the NDT and T3. Thank you.

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