Reducing antibodies

[infomaniac]

Just come back from docs and been told yet again that you cannot reduce TPO antibodies. I am determined to prove my point so can anyone point me in the direction of something concrete, possibly written by someone in the medical profession? I am so sick and tired of being treated like a hypochondriac

[Clutter]

Infomaniac,

100% gluten-free diet may improve symptoms and reduce antibodies but it is likely to take up to a year, perhaps longer, for antibodies to drop. Some people also eschew sugar and dairy in order to reduce antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

[infomaniac in reply to Clutter]

I've been GF for about three years now, recently did the Leaky Gut diet and am still keeping off dairy, grains etc and understandably I would like to know if anything is working! This is the second GP who has looked at me condescendingly and said that GF makes no difference and I am just itching to prove a point. I am currently looking at Blue Horizon tests-it will pain me greatly having to fork out so much cash but what can I do? Furious!!

[Clutter in reply to infomaniac]

Infomaniac,

If YOU want to know whether your dietary changes have reduced your antibody levels fair enough but I would consider it a waste of money to pay for testing purely to try to prove something to your GP.

GPs are not taught nutrition at medical school so most are of the opinion that they only people adversely affected by gluten are diagnosed coeliacs.

[infomaniac in reply to Clutter]

I want to know for myself mainly. Normally things like this just fly over my head but I am so hacked off being looked at like I am some kind of imbecilic hypochondriac! If they are testing my blood anyway is it so much trouble to test my antibodies as well?!

My antibodies worry me so much as I have a friend with Hashis who has been diagnosed with MS so am keen to reduce them as much as poss.

[LindaC]

Sorry infomaniac - I've never been told my TPO antibodies... just told 'negative' and 'It makes no difference because the treatment is the same regardless' [which is ridiculous and I can't tolerate T4 alone] but I have heard that antibodies can fluctuate in any event. Sorry, I don't know enough on this; hopefully some of the wonderful people on here will let you know. Hope you get some good info - yes, I know exactly what you mean Best to you xox

[infomaniac in reply to LindaC]

I must be "lucky" then as I've been given mine a few times. They are gradually coming down (I think/hope) but I want to know that all my hard work is not in vain!

[LindaC in reply to infomaniac]

Ah I get all of mine - this one not so; 'they' just say 'Negative'... can't be A*d to argue on this one! Keep on doing what you're doing and I'm sure it will

[infomaniac in reply to LindaC]

If I was told "negative" I would just accept it Linda-you don't want to start poking a hornet's nest! (Misunderstood you earlier....brain fog!!)

[LindaC in reply to infomaniac]

I like to see #'s and ranges as a rough gauge because 'fine' to them is not always 'fine' at all - like someone's TSH is 4.9 or 9.9 and they're told it's 'NORMAL' i.e. the kind of equiv to 'Negative'. I've let it go for years now... gluten issue etc doesn't apply to me [barely eat it] BUT people need to know - on their criteria - if they have something or otherwise. Or really what is their point at all

Oh I'll be poking the hornet's nest [meaning research papers and solid reasoning!] soon re hypothyroidism: only so much a person can take.

[crabapple]

Hi Infomaniac, I will follow this post with interest. Having discovered through Blue Horizon blood test I have positive antibodies, I told my GP. She is not convinced this means autoimmune hypothyroidism. (Some time ago one of the GPs ran an autoimmune profile which came back negative, which I understand does not mean it isn't.)

I checked your profile and found this "Eh? I might not have Hashi's"

healthunlocked.com/pasoc/po...

Interesting. Did you look further?

[infomaniac in reply to crabapple]

To be honest I had forgotten about that crabapple! (Shocking memory these days ) In the beginning of my delightful thyroid journey people on here told me that because I had antibodies I had Hashimoto's so I assume that's true for you too?

[crabapple in reply to infomaniac]

No. Hypothyroidism was picked up on a blood test. I can't now remember precisely what prompted the profile to be run. The results came back negative so I was told it wasn't autoimmune. Since it would make no difference to the treatment I didn't fret.

I recently did finger-prick test (whole other story - took 3 pricks.) That came back positive for TPOab & TGab. At the GP visit she said they only test once [because] if you've got them, you've got them.

[infomaniac in reply to crabapple]

Well of course that's true (although I have read of a couple of people who have got their antibodies to a normal level-lucky things) but I don't really understand where your GP is coming from, unless your levels were under the range or something? Mine are always sky high which is why I'm so keen to get them reduced.

[crabapple in reply to infomaniac]

Second try - first lost in the ether.

Nothing "borderline" about those bunnies. Not certain but possible flare of some kind.

Whole surgery seems to be "you're in range" merchants. I'm not convinced I'm stable. (Bad pun alert ) Actually with vertigo and dizziness thrown in I'm not.

Would like a filter: this is hypo, this is adrenal, that one's Vit d...

I can dream, can't I?

[TraceyLE]

Hiya,

I am also trying to reduce my anti-thyroglobulin as the recommended range is under 115, yet mine were 427 in 2013, 599 in 2015, 1125 in Feb this year and now this week I have just had a test with Blue Horizon and they are 2278 so getting worse. I intend to go gluten free until February and then have another test to see if there is any improvement.

I took vitamin supplements for the last few years and got all my levels to normal or above normal and then stopped taking them after the Feb test this year. In the last 8 months all the levels have dropped significantly B12 from 1036 down to 345, Vit D from normal range 75 down to 45, ferritin 51.5 down to 42.8 and serum folate from 23 to 13. It was a good test/experiment and shows I need to supplement again as I have been feeling tired and listless again.

Not exactly an answer to your question but I will get back to you in February 2017 lol.

[infomaniac in reply to TraceyLE]

Good luck with that Gluten free is fine,honestly...but doing it for the first time with Christmas in the middle might be a bit tricky!!

[humanbean]

Look at sites created by Izabella Wentz. She has a website and a Facebook page. She has also written a book.

She is a Hashi's sufferer herself and has managed to either put it into remission or reduce its severity.

amazon.co.uk/Hashimotos-Thy...

The book gets good reviews. I've never read it myself - I don't have Hashi's.

[infomaniac in reply to humanbean]

Yes I've read stuff by her before. It's great to know that it Hashimoto's can be thrashed into submission

[puncturedbicycle]

Ldn and selenium are meant to be good. My antibodies are perpetually high but I've never organised antibody efforts w testing. My plan is to do another antibody test having been on sublingual ldn for at least two months to see if it has changed.

A year of gf didn't make a substantial change to my antibodies, or if I remember correctly one went up and one went down slightly. Others swear by it. My theory is that there is a genetic reason why this works for some and not for others.

[infomaniac in reply to puncturedbicycle]

To be honest it hasn't made a massive difference to mine either but being GF makes me feel better so I'm sticking with it. Will you let me know how you get on with the LDN?

[puncturedbicycle in reply to infomaniac]

Sure, of course! And feel free to pm me re ndt if I can answer any questions. I've been on it for over a year and am trying my third iteration (there are various ways to take it).

We know how corrosive powerlessness and hopelessness can be, so any positive action you can take is good! I have a friend whose rheumatologist suggested an elimination diet and it turns out when she eats wheat her RA flares. There are people who feel better being gf and that's a good thing to know. I was hoping to be one of them but it doesn't seem to do much for me either way.

Down the road I predict we'll find out there is a lot of genetic stuff behind the scenes that supports why different people react differently to dietary exclusions.

[Fruitandnutcase]

Maybe it's just a fluke but after a year being totally gluten free my antibodies have really reduced -

They started at

Anti ThyroglobA 537.9(0-115) Anti ThPeroxidA. 33.4(0- 34)

Last week they were 74.3 and <5

I've still got antibodies but I've seriously reduced them over the last year.

The main reason I get them tested is to see if the GF diet is working. I wasn't going to stick with a GF diet if it wasn't making any difference - it's made such a difference I wouldn't stop now.

I joined Coeliac U.K. and got their 'bible' - a book listing everything gluten free and where to buy it. It's well worth the money it costs to join.

Now I would rather not eat than eat anything not GF. I find it quite easy to do. I read the labels on absolutely everything, gluten can pop up in all sorts of odd places. M&S tub of dried fruit and almonds for example - - who would have thought that.

We eat out quite a lot and I don't have any problems with that. I found grabbing a quick snack especially as I eat a low carb high fat diet LCHF - I discovered I had steroid induced type2 diabetes this time last year - I've eaten my way right out of it now - but grabbing a quick snack was the most difficult thing for me because I tend not to eat bread / grains/jacket potatoes because they spiked my blood sugar.

I also gave up diet drinks and now drink only water / tea / coffee.

I think it would be well worth giving gluten free a really good try, I'm sure you won't regret it - but (I think) you have got to do it all the time, you can't be 'sort of ' gluten free, you either are or you aren't.

[Josiesmum in reply to Fruitandnutcase]

Amazing how a change of diet can halt the destruction of the thyroid. If only doctors knew this and would share this with patients and potentially prevent a whole lot of suffering.

[infomaniac in reply to Josiesmum]

If only doctors knew a lot of things about the Thyroid-our lives would be so much easier wouldn't they!

[Fruitandnutcase in reply to Josiesmum]

It's the same with Type 2 diabetes. A lot of people have reversed their T2 by Diet - low carb, high fat (LCHF) and it is known to work yet the establishment still put out that you should be eating a high carb diet. I was given the food pyramid dietary advice.

I was lucky though that when I was diagnosed I found a wonderful book called How to Reverse Your T2. Diabetes by a Dr David Cavan. I read it from cover to cover, was totally inspired, bought myself a blood testing meter, did exactly what I read in the book and three months later my HbA1c was better than it had ever been and I'm no longer T2.

When I told my diabetes specialist nurse that I had gone onto LCHF she said 'hmm, that's low GI'. She knew it wasn't but couldn't bring herself to say LCHF, never mind that it actually works.

I watched the Panorama programme the other night and again it wasn't mentioned once. They concentrated on amputations and bariatric surgery - bariatric surgery does work, but there are other ways less drastic to do it too.

Unfortunately medical thought moves very slowly. I've just realised that diabetes and thyroid all come under endocrinology so maybe I should say endocrinological thought moves very slowly. 😱

[infomaniac in reply to Fruitandnutcase]

Wow Fruitandnutcase that's fantastic. Mine started out at 1600 and have gone down a bit but nothing like yours. I'm the same as you-I would rather starve than eat gluten. It's not that hard to do really and most restaurants have GF options which is great

[Fruitandnutcase in reply to infomaniac]

Keep going, it's taken me a year to get that far. I do miss things though - I walked past a lady in a cafe a few weeks ago and it took all my strength not to crab the big fluffy sultana scone and butter off her plate and run off with it - but it's worth it when I see my low antibodies.

GF brownies are usually pretty good, it's just the idea of a big fluffy but slightly stodgy scone that I miss. 😉

[infomaniac]

I must still be doing something wrong-mine are still quite high. Well done to you though you lucky thing

[Hidden]

After 12 months gluten/dairy/soy free and taking 200mcg Selenium daily my antibodies on my last results showed a reduction. I haven't got the figures to hand sorry.

[Fruitandnutcase in reply to Hidden]

It's amazing watching them go down isn't it.

[Hidden in reply to Fruitandnutcase]

It's reassuring that they do x