Low Dose Naltexone and Thyroid / Hashimoto’s

So I have been making progress over the past 18 months and taken some more steps forward in the last few months especially.

During this time ( the last 3-4 months) I have been using LDN and gradually titrating up the dose / dealing with the symptom flares it seems to cause.

Prior to the LDN I have also been transferring over from levothyroxine ( T4 mono therapy) for my Hashimoto’s / low thyroid function - to a T3 /T4 combination.

Mainly because Horowitz in his last book writes that many of his patients also have Hashimoto’s - and most will not get better until they get their thyroid hormones ( Free T3 and free T4 in the optimum ranges). This is no trivial thing as each person is different and there are almost as many conflicting opinions on thyroid disease as there are on Lyme disease! it also takes a while.

However, this has been going rather well – and I do think I have felt the benefit in terms of energy and function during the day. in addition, it gives me some added assurance my thyroid hormones are in the right place, it’s another potential barrier out of the mix and since they are essential to proper immune functioning – I will have a better chance to fight off whatever infections I may have.

The odd thing is - after years of pretty stable thyroid tests and my antibodies dropping back down into the normal range for people without Hashimoto’s disease for the last 3 years. my last thyroid panel was unexpectedly different.

TSH was about 5x higher than the last 2 tests at 2.17iu (the previous 2 tests within the last month were 0.32 and 0.08) and free T3 and Free T4 were both a bit low.

This is odd as thyroid hormones dose have not changed for 3 months - and these last 3 readings are all in the last month or so - so not sooner than 2 months past the last dose change.

One thought I had is could the LDN be somehow messing with the results

I have read in the LDN literature that hashimoto’s can suddenly right itself during LDN treatment and that frequent testing is recommended for this reason – but my results seem to indicate that it could in fact be going the other way……

Bit of a long shot – but has anyone else has experience with LDN and hashimoto’s and odd results?

Astroman - thanks for your input - and for wading through my rather lengthy account - but both antibodies in all the recent tests are still in the normal range been this way for the last 3 years.. thats why i am kind of doubtful of an auto-immune flare

but i have heard from some people that the damage to the thyroid gland is not caused by antibodies at all - in hashi - but that they are simply some kind of marker for auto-immune activity rather than the actual destructive mechanism - but have yet to validate that from any scientific sources. just the view of someone on a thyroid forum elsewhere

BTW - i haven't come across anything from authoritative sources on LDN saying it is a bad idea in Hashimotos - far from it - auto-immune conditions including hashi are squarely where it is targetted by integrative health professionals. ( plenty in the standard western conventional medical fraternity who disapprove of anything off label use though) ....any sources you can point me to on that risk/counterindication for LDN and hashi?

thanks, Astroman - the source that said the thyroid damage is not caused by the anti-thyroid tissue antibodies in Hashimoto's was just a veteran member of a thyroid disease support forum - much like this one - but did not provide the source for their remarks. so i don't know what they were inferring the actual mechanism is.

i would be interested in doing some more reading into LDN and Hashimotos if you can point me towards where you found the info on LDN making it difficult to manage

my hashi was diagnosed first in 2015 - but there was a lab test outside the normal range (around 6IU i think) for TSH a few years before that that was never mentioned to me at the time or followed up by the PCP with a second test as they should - I only found out about it when i requested all my medical records years later while trying to figure out the reasons for my illness 2015 onwards)

my thyroid antibodies dropped to near zero after about 18months on levo and all the anti-inflammatory buhner herbs and have stayed pretty much at zero to 10 range since mid 2016 - very slight raise of one of them in the last test but still well inside the "normal range".

I am self-treating and self-testing as getting either Lyme or hashi treated properly in the UK is nigh on impossible

OK I got you Astroman

I think the guy was just pointing out that the antibodies are not the physical mechanism that attacks the gland tissue - not that antibodies are not present in hashi

this link says

"In Hashimoto's thyroiditis, large amounts of damaged immune cells invade the thyroid. These immune cells are called lymphocytes; this is where Hashimoto's other name—chronic lymphocytic thyroiditis—is derived from."

https://www.endocrineweb.com/conditions/hashimotos-thyroiditis/causes-hashimotos-thyroiditis#

which is i guess what the guy was pointing to - i didn't know that .....

I will do a bit more reading on the topic of LDN and Hashi and see if I can find out what's likely to be going on
will retest in a few weeks also I think - just to be on the safe side

thanks again for your input

Post Edited (Garzie) : 1/31/2021 2:35:03 PM (GMT-7)

This is true wrt antibodies, i believe.

If I remember correctly, in hashimoto's the antibody is just a marker. Its the T-cells which actually do the damage i believe, but at some point during the process an antibody is produced that we use as a marker. But this idea goes hand-in-hand with everything we've been learning about the immune system recently. The old model where every process was either humoral (bcell) or cellmediated (t-cell) is incorrect. There's b and t-cell involvement in almost every process. B-cells present antigens to t-cells, t-helper cells signal b-cells and release cytokines for them.

the only thing I have come across so far that could be described as a negative effect of LDN in those with Hashimoto's - is whereas you titrate up the LDN dose - your body can suddenly become better at converting T4 to T3 or better at using T3 ( due to the inflammation-reducing effects of LDN)

i can see how this could be construed as a negative effect as it can be seen to destabilize a medication routine that has taken some time to establish - but in fact, its what you want to happen so your body responds more normally to thyroid hormones

in any case, it's not really what is happening in my case - as in my case my TSH has suddenly gone high - rather than low as you would expect - if the LDN were increasing my sensitivity to thyroid hormones

also, my disrupted sleep and pain symptoms seem to point to more inflammation or some other imbalance - rather than signs of lowering inflammation

will keep looking for references to hashimotos flares from LDN but so far no luck

Have you looked at the LDN website - it mentions Hashimotos.

This website is what I stumbled across many years ago before I knew I had Lyme disease.
(7 years ago?)
My Dr agreed to writing a script for the LDN to be compounded for low dose.

https://lowdosenaltrexone.org/index.htm#cautionary_warnings

Girlie said...
Have you looked at the LDN website - it mentions Hashimotos.

This website is what I stumbled across many years ago before I knew I had Lyme disease.
(7 years ago?)
My Dr agreed to writing a script for the LDN to be compounded for low dose.

https://lowdosenaltrexone.org/index.htm#cautionary_warnings

thansk Girlie

yes that's the kind of advice regarding Hashi's and LDN i am aware of - same on that site as the other main one - the Low Dose Naltrexone Reserch Trust site

And thats also the approach i have been following - v slow and gradual dosing - testing thyroid frequently - i actually started at 0.5mg rather than 1.5 and i am increasing only by 0.25mg at each step now - so super slow.

the issue is i seem to be getting the opposite response - instead of a rapid normalizing ( increase in endogenous) of thyroid Hormones and a need to reduce medication as a result of normalizing immune action ( reduction in Autoimmunity - i am getting a reduction in thyroid hormones - and an apparent need to increase thyroid hormones ( mechanism unknown ) hence the concern.

of course, it could just be a rogue test result from the lab - but i have been in touch with them and they are a UKAS accredited lab - which means they are subject to blind 3rd party verification testing - something none of the Lyme labs or other commercial labs do and they have no explanation for what might have happened.

maybe in the phase where the adverse effects of LDN hit me - right after a dose change - then something in the body is messed up and hormones affected - who knows - think i will just have to retest in a few weeks

appreciate all your thoughts ..