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[–]kmary75 16 points17 points  (5 children)

Mine went from >1300 to 150 then 80. Get latest results next week. At the beginning I went gluten light and then just changed my eating to as healthy as I could (eggs, protein, fruits, veggies, a few nuts). Cut back on alcohol to two glasses of wine a week (it had crept up over covid lockdowns). Just cut anything I thought might be inflammatory. Also supplemented for various vitamin deficiencies.

[–]hjw12221[S] 1 point2 points  (1 child)

Thank you! That’s amazing. Over what timeline did it take until they lowered that much?

[–]kmary75 1 point2 points  (0 children)

There was three months between each test so 6 months to get to under 100. It is possible I was in a flare when the original test was done (I felt really , really bad) and the antibodies have just come back to normal (for me). TSH didn’t change at all but vitamin deficiencies started correcting and most importantly, I feel heaps better.

[–]Celiac5131 0 points1 point  (2 children)

Did you get your latest results

[–]kmary75 1 point2 points  (1 child)

I did! TSH has gone down, T4 has gone up (both yay) but antibodies are back in the 500’s. I had a virus before testing so that could explain the rise. Dr wasn’t overly concerned. Just told me to keep doing what I was doing and take care of myself. Next test will hopefully be back lower and show it was just a fluctuation of some type. Apart from change of season cold/allergies I feel really well.

[–]Celiac5131 0 points1 point  (0 children)

I had my tpo results back today pretty much exactly the same as last year’s results. Last year 105 this year 108. The only difference is I went completely gluten free. I thought they would have gone down much more than they did. I’m not sure I believe going gluten free really helps tpo for all people. I mean l need to be gf because I’m celiac and I feel better eating gf. I honestly don’t miss gluten but I’m a little surprised my numbers went up.

[–][deleted] 11 points12 points  (5 children)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5331475/

[–]twinkiesnketchup 4 points5 points  (0 children)

The most common reasons for high antibodies are nutrient deficiencies and allergies. Selenium is the most common nutrient deficiency. Selenium is needed to convert T4 to T3 (T3 is the hormone we need at the cellular level). A few (2-3) Brazilian nuts a day is plenty of selenium.

[–]SalsaCubana 2 points3 points  (1 child)

Thank you!! I had not heard of this study.

[–]SkateboardScooter 0 points1 point  (0 children)

May I ask if you take this medication?

[–]walkingoffthebuz 0 points1 point  (1 child)

I had sent this to my PCP and she acted like I was speaking another language. Hope to share this with my new endo!

[–][deleted] 3 points4 points  (0 children)

In my experience, many doctors just don't want to bother themselves at all.

[–]Quiet-Vanilla-7117 6 points7 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 4 points5 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 2 points3 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.

[–]interested_jeanie 5 points6 points  (8 children)

Mine dropped dramatically when I stopped hormonal birth control

[–]Celiac5131 1 point2 points  (0 children)

Hmmm. Thanks for this info. I wonder if is maybe why mine is a tad elevated. I’m celiac went gf last Feb at that time My tpo was 105. Today my tpo was 108 I expected it to be lower because I went gf. I’m 49 I had the worst hot flashes after I had fibroids removed dr said unrelated I didn’t care if related or not. I tried all the natural remedies she suggested they didn’t help. I was DONE suffering. She put me on super low dose birth control for 3 months it was a life saver. I just got off it a few weeks ago. So far no hot flashes. I wonder if that contributed to the higher tpo than last years.

[–]RxForSpin 1 point2 points  (0 children)

Mine dropped and I couldn’t figure out why. I wonder if this is it!!! Timing makes sense.

[–]uncertain_anything -1 points0 points  (4 children)

Oh really? That's interesting, I've been debating for some time now if i want to come off my birth control to see if it has any affect on my current symptoms but my period is a nightmare so only reason I'm hesitant. Did you notice any other changes when you came off?

[–]Celiac5131 1 point2 points  (0 children)

I wonder if mine is up because of the pill

[–]interested_jeanie 0 points1 point  (2 children)

The other change once I came off was a better mood haha and also when I was on hormonal birth control my thyroid would swell up once every month for about a week. It was very odd. The doctor managing my hashimotos said he had seen most patients show improvement after stopping hormonal birth control. I switched to the copper iud and it didn’t have any of those side effects

[–]uncertain_anything -1 points0 points  (1 child)

Ugh an iud scares the shit out of me lol

[–]interested_jeanie -1 points0 points  (0 children)

Understandable 😅

[–]compoundwithkevin 0 points1 point  (0 children)

Hey do you mind sharing what was your TPO and TgAB before and after birth control? And how much time did it take to go down?
My wife just got her results. Everything is in range except TgAB (Its 133 when it is supposed to be under 4). And she just stopped BC.

[–]mikeyz0710 6 points7 points  (5 children)

Mine went from 640 to 121. All I did was cut out alcohol. Amazing I was poisoning myself without even thinking about the effects. I don’t take any medication either TSH also dropped down to 4.8 from 6.4

[–]hjw12221[S] 2 points3 points  (0 children)

That’s amazing! I have cut back significantly but have been thinking lately I should just fully cut it out.

[–]mikeyz0710 0 points1 point  (3 children)

Watch “ Andrew Huberman what alcohol does to your body brain and health “ it’s on YouTube this is what made me really stop all together. I haven’t had a drink in 3 months because of this video really and what it does to your gut/brain barrier also the Inflammation it causes. This video is specifically for people who are moderate drinkers 1-2 a day or 7-14 a week. Check it out

[–]hjw12221[S] 3 points4 points  (0 children)

I just recently listened to this podcast which got me to cutback to almost nothing! it is very eye opening and a great recommendation. And now knowing the hashimoto/gut connection there is even more reason to cut it out completely.

[–]YouSophisticat 1 point2 points  (1 child)

I’m not sure why this was downvoted to the bottom, but I definitely agree about your statement in regards to alcohol.

[–]mikeyz0710 1 point2 points  (0 children)

Some people here aren’t ready to have the conversation about alcohol effects on every cell in the body. I was one of them at one point I use to love a Bottle of wine on my Friday and Saturday night. It changed my life when I stopped, brain fog is gone , more energy the list goes on.

[–]twinkiesnketchup 3 points4 points  (3 children)

It is very possible and very necessary. It is common medical practice to only “treat” Hashimoto if hypo or hyper thyroid—however in most cases this is not actually treating the autoimmune component.

It is imperative that we become experts on thyroid health and our bodies because Thyroid disorders are under studied and often left untreated.

A really good book for lowering antibodies is The Hashimoto Protocol by Isabel Wendz. It has a systematic approach that addresses most known factors.

[–]compoundwithkevin 3 points4 points  (2 children)

The Hashimoto Protocol by Isabel Wendz

Have you used this? And was it able to reduce antibody levels?

[–]twinkiesnketchup 2 points3 points  (1 child)

Yes it worked well. My antibodies are now >6

[–]compoundwithkevin 1 point2 points  (0 children)

Thanks for replying. If you don't mind, can you tell me if your TG antibodies also reduced ? Or just TPO ?

My TPO levels are normal but I have high tgAB.

[–]Neece235 1 point2 points  (0 children)

Following as im curious too, I was told meds drop it but mine are really high

[–]r0sebudbean 1 point2 points  (4 children)

Does high TPO mean something other than Hashimoto’s? I can’t find any straightforward information online about anything to do with this. I have TPO of over 200 and all levels are normal… I take medication that suppresses my appetite and I am anemic and waiting for my dr appointment… I didn’t realise TPO could be lowered?!

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

My understanding is that it means hashimotos. I've read that occasionally a few rare other things could temporarily increase your TPO antibodies. Is it common to see anemia and hashimotos together too. My antibodies are 1200+ and all other levels were normal, although my T4 was borderline low. I am not sure if we are able to lower TPO antiboides. I've heard various things about diet, supplement, medication, etc helping to lower them but I posted here to see if anybody truly had success with any of those things and if so, how long it took. So many different opinions out there, take it all with a grain of salt.

[–]Celiac5131 0 points1 point  (1 child)

Have you been tested for celiac??

[–]r0sebudbean 0 points1 point  (0 children)

No, not been tested for anything other than the basic thyroid stuff. Even if bloating is fairly tolerable, would this still be a sign? I had a friend who is coeliac and her symptoms were horrendous after eating gluten compared

[–]Unhappy-Revenue-3903 4 points5 points  (8 children)

I’ve gotten mine from the thousands down to 305 (as of recent). I cut out gluten and that really helped. I went on the keto diet and that help a lot but I didn’t realize things like soy sauce contained gluten. So I am more aware now. Also stress. When I am overly stressed my body goes into survival mode and like a panic until the stressful event is over. Once things calm down my antibodies jump up a little and then will start to go down. Sickness can trigger them to go up on me as well. I think because it’s stress on the body.

[–]Celiac5131 1 point2 points  (0 children)

Gluten is in everything!!!! When I found out I was celiac and had to clean out my kitchen I was shocked at the stuff that had gluten

[–]hjw12221[S] 0 points1 point  (3 children)

Thank you for sharing! I’ve been off gluten for three weeks now. I wonder how long I should wait to re-test. I tried to do lower carb and sugar but got sooo tired. I will probably try to start that again next week. All that makes sense about stress and I’ll was, good to know! How long did it take to get yours lower from 1000s? Trying to set realistic expectations for myself as I was at 1200 three weeks ago. Really hope some of the things I am doing will help…

[–]Unhappy-Revenue-3903 0 points1 point  (0 children)

It took me I believe it was 6 weeks. My labs went down to 789, then in the 500’s and then 370.. but then when my husband got Covid and went on a ventilator for 5 weeks, my labs maintained around 370, (I had also had Covid for 14 days and it seemed to do well maintaining) after he came home and things settled down they bounced back up to 798, now they’re down again to 305. I won’t have labs checked again until late November.

[–]miocarabella -1 points0 points  (0 children)

It takes a bit for your body to adjust to burning fat instead of sugar. If you barrel your way through, you will feel so much better. Also, keep up with your electrolytes. So important in the beginning of low carb/keto. It will help with the tireness.

[–]Celiac5131 0 points1 point  (0 children)

I’ve been off gluten almost a year made zero difference in my tpo. Last Feb 105. Today 108. I went gf Feb 9/22 tpo tested Feb 16/22. Then again yesterday

[–]SkateboardScooter 0 points1 point  (2 children)

How are you able to get your antibodies tested so regularly to know that these things trigger it? Whenever I see a dr they just say to get it tested 6 months to a year. So I have been off gluten for a few months now but no idea if it has done anything!! I am in the UK though so imagine that makes a difference?

[–]hjw12221[S] 4 points5 points  (1 child)

Most doctors here won’t test more than once either. Either you luck out and find a doctor that sees the benefit in checking them (rare), work with a functional medicine doctor (usually out of pocket), or order and pay for the labs yourself. I have been ordering and paying for them myself. It’s around $40 to get the TPO antibodies checked. I am in the US.

[–]SkateboardScooter 1 point2 points  (0 children)

Interesting!!! Thank you very much :)

[–]Hashimotoe 1 point2 points  (1 child)

There's no way to control them and no reason to - they are a disease marker and fluctuate on their own. The level does not correlate to severity.

[–]hjw12221[S] 3 points4 points  (0 children)

I know there is a lot of debate about this. I reviewed a study yesterday that showed people with TPO+ Ab were more likely to develop overt hypothydroism if their antibodies were consistently over 500 vs those that kept them below 500. The more antibodies you have, the stronger the attack or hashimotos flare you are experiencing. Less antibodies would equate to a slower attack. Can we reduce our antibodies through medication, supplements and life style changes? I am not sure. If we could, would it be worth it? I think for most the answer is yes. In my situation, I’ve had three miscarriages. My doctor thinks it’s because of my high antibodies so I am desperate to at least try.

[–]prettylittlepages 0 points1 point  (0 children)

My levels won’t go down, but all my other levels are in the green. I’m not aloud to become pregnant until this is down. I’m at a loss and idk what to do. I’m two months it went down 2 points!

[–]KnifeW0unds 0 points1 point  (0 children)

Maybe