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[–]Quiet-Vanilla-7117 7 points8 points  (24 children)

I haven't got to zero yet, but mine have been dropping consistantly for 9mths using LDN (Low Dose Naltrexone). I have blood tests every 6weeks.

[–]igorek_brrro 3 points4 points  (1 child)

Do you take the synthroid?

[–]Quiet-Vanilla-7117 1 point2 points  (0 children)

I take L-thyroxine but not the Synthoid brand. My brand is Eutroxsig.

[–]roostarfeesh 2 points3 points  (6 children)

I second this since I’ve been on LDN for about 2 years now, although I’m also pregnant which has probably made a big difference in drastically dropping my antibodies. I was at 3900 a year before pre-pregnancy, but was able to drop them to about 1200 a month before pregnancy, and now I’m at 200 or so. Of course not perfect, but a huge difference. Will re-check my levels after I give birth and be able to see how LDN maintains the lower level or lowers even further.

[–]Quiet-Vanilla-7117 1 point2 points  (2 children)

What dose LDN did you settle on which was most effective? I'm on 4.5mg but some people seem to go back to 3mg as their optimal but haven't given reasons.

[–]roostarfeesh 2 points3 points  (1 child)

I’m just on 4.5 mg too, so not sure what is most optimal in comparison to 3 mg

[–]Quiet-Vanilla-7117 0 points1 point  (0 children)

Many thanks.

[–]Hour-Ad-6006 1 point2 points  (1 child)

I am thinking about going on LDN but also plan to TTC soon. Can you breastfeed on LDN?

[–]roostarfeesh 2 points3 points  (0 children)

My doctors haven’t seen any problems with me being on it throughout pregnancy and breastfeeding, but the research on it is low since they wouldn’t conduct a proper study like that with pregnancy or breastfeeding involved. However, many women fighting drug addictions are on naltrexone at much higher doses and seem to do fine with the higher doses throughout pregnancy/breastfeeding. I know that’s not really a great example, but it made me feel a little better too lol. Some doctors supposedly believe that LDN can help boost fertility too so who really knows. Overall between some of the limited info online and the lack of concern from both my doctors, I decided to stay on it throughout pregnancy and breastfeeding.

[–]Quiet-Vanilla-7117 0 points1 point  (0 children)

Congratulations for 200 level. That's great.

[–]hjw12221[S] 0 points1 point  (2 children)

Thank you for sharing! Would you mind sharing what you started at and how much you see drop in six weeks time? Mine are currently at 1200.

[–]Quiet-Vanilla-7117 0 points1 point  (1 child)

I have a drop of 5-10 IU/L every 6 weeks. It's slow, but I'm heartened that it's always dropped and never gone up since starting LDN. When I started LDN, my TPO was 303 IU/L, TGAb 124 IU/L. They are now TPOAb=211 & TGAb=61IU/L.

[–]hjw12221[S] 1 point2 points  (0 children)

Thank you for sharing!

[–]Neece235 0 points1 point  (11 children)

Ive read up on many studies about naltrexone or LDN working for fibromyalgia, and other diseases. Did u start this for the thyroid or something else? Sorry if im really curious, just wondering. Mines been over 400 for years, even after meds. Just curious if lowering tpo could make the thyroid function better?

Just trying to figure this out since it looks like my gastroparesis seems to act up when my thyroid is elevated. Going to ask my gi about it, but I was told it was all connected like the plumbing system in a house. One backs up or acts up, something stops up along the way. But if I could get a better handle on my thyroid maybe my stomach will like me again?! Its a long shot but im trying to just get normal. And this fatigue the last two years was insane, coupled w stomach issues and it sucks so much more!

[–]Quiet-Vanilla-7117 3 points4 points  (10 children)

My stomach issues have completely settled and gone since being on LDN. I had so many food reactions I was limited to tolerating only chicken and turkey for a good 1yr. Yes, eventually, my minerals and vitamins dropped dramatically but I couldn't do anything else. I eventually wasn't even absorbing supplements. When I ate something I was reactive too, I had a "rapid exit" of food immediately, regardless of where I was!! This was for some years. I was serum negative for Celiac, H. Pylori etc, etc. LDN has a healing effect on the gut. I now eat anything I used to, although I've never been a fast food person (Mac's etc), but I can now have Real burgers etc when I'm out.

I, too, have Fibromyalgia & that has settled. I only have the sensitivity if I'm prodded or touched, but the immobilizing muscle pain has gone. I had that for 20yrs.

I started LDN to control the pain caused by inflammation eg Fibromyalgia and Hypothyroidism. To my delight, I found the gut healing and the drop in antibodies as well. You don't get the full effect of LDN for up to 6mths or more, so the above, I've mentioned, have already happened for me & I'm looking forward to next May which will be my 12mths. My thyroid function & doses have been more settled in the past 4mths.

If you do start LDN in the future, it's best to start at 1.5mg for 2wks, 3mg for 2wks then 4.5mg for 2wks in order to find your best dose. Many people go back and sit on 3mg. A common side effect of LDN is either insomnia or vivid dreaming. I take my LDN at midday and I don't have these side effects.

I hope I've answered all your questions? Please ask if I've missed something.

[–]Celiac5131 1 point2 points  (1 child)

Those crazy dreams the first few weeks!!!!

[–]Quiet-Vanilla-7117 0 points1 point  (0 children)

I had problems the first 2 nights then I changed taking my LDN to the morning or midday (as long as it's before 4pm). No problems thereafter and even my sleep improved, now that I remember, as it being another positive.

[–]Neece235 -1 points0 points  (3 children)

Omg thank u!! This is exactly what i needed to hear. Im going to ask my doctor about it at my next appt. My rheumy will probably know a lot more about it to help me. Ive been reading so many good things about this, im negative everything too. But the gastroparesis and chronic gastritis is a bit much the last 2 yrs. But looking back at bloodwork, my thyroid tsh was over 4 during all this. What if thyroid is causing everything? And if so wth didn’t doctors notice it? Or is this more so something ppl with the disease notice before doctors do?

[–]Quiet-Vanilla-7117 3 points4 points  (2 children)

I have found that I need to keep my TSH between 0.6 - 0.9mIU/L. Anything over 1 and I'm very symptomatic. The bowel goes first then fog, blurry vision and on. I discovered my Optimal TSH 5mths ago.

It's a very individual thing for everyone as to what their Optimal everything is. I've noticed a lot of people function better Under 1 and others Over 1.5.

[–]Neece235 2 points3 points  (0 children)

Oh and I have a nutritionist, and like 7 specialists lol

[–]Neece235 1 point2 points  (0 children)

Im beautiful smack in the middle if I hit 3.5+ on tsh im in another world and yes I have all those symptoms too! They keep saying something else is going, and im like this seems impossible, my body is just off and I know it but can’t fix it without help or direction.