Just thought some people here would be interested in knowing this.
I started taking low-dose naltrexone back on 6th July (6 weeks ago). I had a blood test on the same day before taking the first dose to test my antibodies before starting LDN:
TPO: 180 (<34)
TG: 433 (<115)
Yesterday I had a second blood test to test my antibodies to see how LDN has affected them so far:
TPO: 162 (<34)
TG: 382 (<115)
Overall this is a 13% reduction in TPO and 16% reduction in TG in just 6 weeks, and I'm not even on the full dose yet (I started on 1 mg and have increased by 0.5 mg every two weeks i.e. week 1: 1 mg; week 3: 1.5 mg, week 5: 2 mg). Full dose is 4.5 mg.
I know this is still early days but I feel so encouraged by this and wanted to share.
You do know, don't you, that even if you get rid of the antibodies completely - which is highly unlikely - you will still have Hashi's. It doesn't go away. Antibodies fluctuate all the time, but the antibodies are not the disease. Sorry, if that's not what you want to hear.
Hashimoto's is an autoimmune disease mediated by those antibodies. Lowering the antibodies can only be a good thing, even if doesn't fix your immune system.
No, not mediated by those antibodies. Those antibodies just come along after an attack on the thyroid to clear up the mess. They don't cause the attacks in any way.
You can find it in many places, but on here, the best source is our own diogenes. Have a look through his posts and replies. I believe, actually, he may have written this:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
That doesn't mean that LDN can't help, though. Lowered antibodies could be a biomarker for reduced lymphocyte attack on the thyroid. There isn't enough research to know for sure, but I'm willing to try it out and see what happens.
You don't need to know anything, the person who calls you for your consultation explains everything and lets you ask whatever questions you wish to ask before they prescribe it to you. The lady I spoke to was wonderful — really patient, empathetic and knowledgeable. I would recommend exploring it if you're interested. As I also had my dose of levothyroxine increased at the same time as starting LDN it's difficult to gauge exactly what effect it's having, but I haven't experienced any side effects, it's cheap and it has lowered my antibodies. Although we don't fully understand the significance of lowered antibodies in this context, it's definitely not a bad thing. I have noticed my face is less puffy since I started taking it, but again that could be the dose increase of levothyroxine, however the woman who prescribed it to me said that I could expect to see that happen as that's a common thing people say they notice when they start taking it.
Hey, I should be getting my latest private blood test results tomorrow with my antibody titres so will post them as soon as I do! I'm up to 4mg per day now, will be at the full dose (4.5mg) on Monday.
Well I got my results, TPO has stayed the same at 162 and TG has gone up again slightly, from 382 to 412. I'm a bit disappointed but apparently your antibodies can fluctuate all the time, and the point of me trying LDN was to see what effect it had, I knew it might not work. I think I'll keep taking it and test again in 6 months, maybe I need to give it a longer timeframe.
Were you feeling unwell before LDN and has that changed since you’ve been taking it?
I know GPs and probably Endos as well tend to dismiss the antibody readings but I’ve been testing for it over the last few years - TG antibodies have been in the thousands! I have Lupus as well as hypothyroidism (probably Hashis) never seen an Endo, twice I’ve been refused a referral, I could probably go private but just can’t be messing with it at the moment.
My recent TG result is just over a thousand - down from over 4 thousand previously, don’t know why.
I started on LDN 1mg 10 days ago because I have been experiencing unbearably itchy skin for a few years now (have eczema as well) so I wanted to try LDN mainly to see if it would help reduce the inflammation.
I noticed the first morning after taking it I woke up without the really groggy head that I’d been having so I was pleased with that and the itching has lessened. (Obviously I can’t be sure it was the LDN that helped or just the fact that I had decided to do something about the problem). I will be increasing to 1.5mg and see how that goes.
I was told by the LDN prescriber to get bloods tested as I may need to reduce levothyroxine.
I sometimes think if GPS aren’t bothered by high antibody readings then maybe I shouldn’t be, but I don’t know, think as long as I’m feeling ok then I must be ok!
Anyway, hope your LDN trial works out for you after a little more time🙂
Has the LDN continued to make you feel less groggy in the mornings? I suffer from terrible heavy head a d headaches all day. I've upped my t3 but doesn't seem to be helping even the fatigue 😒
Yes, feeling so much better in the morning and brain feels clearer. It used to take a couple of hours for me to wake up properly after getting up in the morning, I was very sensitive to noise of any sort, I wouldn’t want to talk or listen (I have quite a talkative man🙄which can be draining), just wanted complete quiet, but now I’m a bit more sociable (still like some piece & quiet though😬).
I’ve had tinnitus for a few years now, or at least it’s been noticeable for a few years, I still have that but doesn’t really bother me.
I am now on 2.5ml (liquid)of LDN up from a starting dose of 1ml five weeks ago. The hand eczema seems to be slowly improving (I stopped using hydrocortisone ointment weeks ago when my skin flared up so hoping to stay off that!).
I would sometimes get hives with uncontrollable itching on my back, I haven’t experienced that since I’ve been on LDN, so fingers crossed it stays that way.
I shall increase by .5ml in another week and see how that goes and will need to do another thyroid blood test to check whether the levothyroxine needs to be reduced (I ’ve never tried t3, GP wouldn’t prescribe) slowly slowly is the way to go!
How are you dosing it, is there a protocol or upto individual?
I can sort of get up ok as I'm doing the CT3M but within an hour I have to go back to bed and sleep again!! During the day I'm pushing myself with daily task as i have young children. 😪. Is there a brand that you are taking? I know someone said it makes so much difference.
I can sympathise with your situation, exhausting enough with young children when your feeling fine!
Didn’t know about CT3M so just looked it up, sounds interesting. How long have you been doing that? Do you think that’s working for you? Doesn’t sound right that you’re so tired, are you getting support from GP?
LDN - Lots of info on here: ldnresearchtrust.org
I started with 1 ml of LDN and am very slowly increasing. The maximum is 4.5ml (think you are given liquid to start with until your find a dosage that works for you. Pills are also available).
You do need to get blood tests done to check your thyroid, may need to reduce your thyroid medication, you could always try discussing the LDN option with your GP or endocrinologist.
I've been on the CT3M for the past year or so. I've been so so much better since starting on it. Before I couldn't even get out of bed and a lifeless corpse really.
My doctors are no help at all, they've only referred me to an endocrinologist 😒
Gosh you must have been very poorly, good to know that CT3M has helped.
I have the same problem with GP’s and I’ve asked to see an endocrinologist a couple of times (after all they are the experts, supposedly) but they won’t refer me and one endo said he didn’t need to see me, I gave up asking.
Perhaps you could print out some info from the LDN website to discuss with the endocrinologist (if you see him/her in person) or ask them to check out the website, maybe they will be open minded enough to consider it as part of your treatment.
What symptoms did you find helped with LDN? I really wanted to give it go for extreme fatigue and heavy head and headaches. I didn't think it was possible getting it anywhere else apart from gp. Paul Robinson mentioned it so I'm willing to give it a go.
Zasbag, I was wondering if you are still here, taking LDN and giving it a year's chance to see all it might do for you. I started it Jan 27 took a 1.50mg tablet a.m.and pm.. got overzealous to fix my overwhelming, unsolved Hashi symptoms. Stopped 2 days- and just took .1875 1/8 of a tablet.
Side effects being off it were so bad after, it made me chance getting back on it, to alleviate what it had started.
So my understanding is that you should take LDN around 9pm because "the majority of endorphin production in our body occurs in the middle of the night." (Source: ldnresearchtrust.org/what-t.... I also take mine in liquid form. I don't think it fixes symptoms, that's what the levothyroxine/liothyronine are for. LDN may dampen the activity of the immune system and possibly slow down the damage to your thyroid. I stopped taking it for a while and then took it one day and I felt way better the next day, mind was much clearer. That's the only real effect I noticed.
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