I'm on t3 and t4. The doc I used to see suggested I wait until my antibodies were lower before trying ndt. They have got better (there has been a bit of fluctuation but they're better than they were when I was first diagnosed) but still were too high when last tested (tpo was around 300 and tgab was 40 or 60). Being on enough meds hasn't really shifted them, nor has a gf diet.
I don't know if I ever asked why antibodies and ndt are meant to be mutually exclusive, but I thought it was something to do with ndt being too like the natural human thyroid hormone and going the way of the hormones produced by the human thyroid, so I think the danger is meant to be that when you swap over to ndt you can become hypo (please don't quote me, I'm not a doctor, etc).
So my question is: are there people here who are succeeding on ndt with high antibodies, aka is the antibody theory a load of hooey? I'd like to give it a go, but not if I'm going to go hypo, get ill, etc and have to go back on synthetics anyway.
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puncturedbicycle
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I have very high antibodies and have gone for NDT as I still feel it has better feedback. The STTM site and book suggests that it works best, as long as you raise it high enough. I am also looking into LDN for the antibodies themselves.
If I'm honest, I think this is why I'm a little sceptical of the STTM site, because it seems so utterly gung-ho in favour of one thing. Perhaps I mistake even-handedness for accuracy - ?
I follow the LDN research site but I'm confused about the benefits of it. I know it lowers antibodies but I guess I'm unclear what the benefits are of that.
I don't really feel confident doing a pick and mix on this stuff and what I want more than anything else is a doctor I can afford who will give me a guiding hand.
I think maybe the gung ho is because it's American, and it's a bit more 'forward' than we are used to in the UK. But it makes sense to me that a more natural product would be better than synthetic, but of course it's personal choice. LDN as I understand it, improves your own immune system, thereby reducing antibodies. So although you still have the damage that has been done, you should be able to reduce further damage.
HarryE, Janie Bowthorpe is from Texas, which is a mindset of it's own. Kind of like Thyroid with a capital "T"! I can't think of a parallel to compare in the UK except maybe like the Scots being an independent group and outspoken at times? Like many she started out on Synthroid and when it stopped working was not given another choice. She did not appreciate all the needless pain and suffering she had to endure. She is very pro NDT but none the less there is a lot of good info on her site. PR
Sorry HarryE, I just meant that the site seems in favour of ndt to the exclusion of everything else. I don't disbelieve that ndt is a very great thing, but I guess I just think it's one option among a spectrum of meds.
For myself, I'm also very wary of treating anything like a sure thing. I'm really worried that I'll try ndt and it won't work for me, so I want to know what my best options are.
I have never been convinced of the antibodies argument.
To have that effect, at least some of the protein from the desiccated thyroid would have to pass into the bloodstream. If some protein from desiccated thyroid can get through the gut wall, then so too could, for example, biltong or any other dessicated animal product - couldn't it? For that matter, why not any meat?
If the suggestion were that any and all animal products could stimulate some antibodies, I'd bow down and say "I don't know". As it is rather specific to thyroid tissue, I simply find it difficult to believe.
Some people do have antibodies to thyroid hormones themselves (yes, T4 or T3!), but the antibodies that are tested are virtually always Thyroid Peroxidase and Thyroglobulin antibodies. Very, very few are tested for T4 or T3 antibodies. And from what little I have read, there is absolutely no difference between synthetic and animal-source thyroid hormones in this regard.
Hi Rod, do you know what that test is? I eliminated many hypo symptoms and successfully lowered my antibodies from 600 to 337 to 150 over the course of a year going gluten and cross reactor free. TSH from 9.3 to 6.7, FT4 from 11 to 12. I then started NDT and 12 weeks in my TPO have spiked back up to 485. TSH 0.02, FT4 13.9. My sore throat returned soon after starting WP Thyroid so I suspected I was having an autoimmune response. A couple of other hypo symptoms returned too. I was never on levo (diagnosed subclinical last year) and whilst the NDT got rid of my afternoon slump on day one, I now have returning eczema and itching (not as chronic as before) a persistent sore throat and my eyes are stuck closed in the morning. All banished pre NDT. I'm on 2 grains. I don't know whether to raise higher (getting retested as labs refused to do the FT3) or call it quits but I would like to know if I have antibodies to T4 and T3. If that is the case, what are the options?! Thanks
There has been little written about these things. The only thing I could grab immediately is below - hopefully that will open the door to further research. The whole chapter is worth looking at - though exceedingly tough going.
[I]Antibodies to a variety of other thyroid cell components are also occasionally present in AITD, including antibodies that react with thyroxine or triiodothyronine (63). The insulin-like growth factor receptor has also emerged as a possible autoantigen involved in ophthalmopathy, with antibodies being detected in patients with this complication, and this receptor co-localizes with the TSH-R on both fibroblasts and thyrocytes (64).[/I]
As far as I can tell, not using NDT with Hashimotos goes back to Dr. Broda O Barnes and a statement he made in response to a question in the 1970s. He was asked about Hashimotos and said that we didn't have much in the US but there was some in the UK and suggested treating with a combination of syn T4 + T3 instead of NDT. Dr. Mark Starr followed in his footsteps with a similar suggestion. Many people on STTM with Hashimotos have used NDT with good results. Recently I found a short video by Dr. Alan Christianson ND who uses NDT with Hashimotos with good success and he mentions a study showing good results. I have not been able to find the study yet. This is the link.
Remember the second rule, 'There is no one size fits all' or 'your mileage may vary'. Whichever route you choose testing your ABs occasionally is probably a good idea. LDN has been useful for many but it still is not widely accepted by allopathic medicine. Again, 'your mileage may vary'. It sounds like you haven't found all the triggers yet. Good luck, PR
Sure, I totally agree with you, which is why I wondered if it was worth giving it a go despite what the doc said. I'm just trying to avoid getting more ill than I am already.
When you say I still haven't found the triggers, I'm not sure what you mean. Could you please clarify?
puncturedbicycle, forgive me if I repeat what you already know. Starting a few years ago with Dr. Kharrazian and others, they pointed out that Hashimotos is an autoimmune problem and what was needed was to find out what was causing the immune system to react, i.e. triggers, and find a way to reduce the response. Gluten and dairy are two of the most well known triggers but there are many others. Dr. Wentz (PharmD) has, I think, the best overall list of the various things to consider in her book and on her website.
Izabellas book is good....I too have raised TPO at 900.
Dr Alexander Haskell in his book - Hope for Hashimotos - mentions that he has stopped using Armour. He says that when that glandular is swallowed - the pig thyroid cells are broken apart by stomach enzymes - both the enzyme TPO and the protein thyroglobulin are released. If and when this enzyme and protein are absorbed through the small intestine - the immune system will be triggered since with Hashi's the anti-bodies are primed and on the lookout for either one of these or both......''
I think the jury is still out and like you I am still pondering what to do to reduce mine. They haven't reduced since diagnosis in 2005. I do however have Crohns and am assuming that has an effect. Feeling good though - so it's all a mystery.....
Thank you Marz. That is really interesting. I am only beginning to get my head around the finer points of antibodies. Interesting though that you feel so well on Armour despite ABs. If I felt well on something I think I'd need compelling evidence to make me want to change it.
I am curious to hear Rod's take on your comment above.
My primary goal was to reduce ABs so my doc would let me try Armour but I'm in two minds about generally worrying about reducing antibodies. I see why it seems sensible to reduce inflammation, but I don't know with certainty how concerned to be about thyroid antibodies if you're being medicated for thyroid problems anyway. I've tried lots of things to reduce mine - gf diet, selenium, thyroid support etc - but of course in general no one really knows how long you have to do these things before they work, and no one is going to have their antibodies tested every three weeks to chart their progress. My doc wanted mine tested along with all my other tests so I was able to keep an eye on them and while they aren't as high as they were, they got to a certain point and don't want to budge.
Sorry PB - am not on Armour. I am a T3 only gal I too am GF - take selenium - Thyroid Support and everything else I have learnt from others !
My feeling of wellness is probably relative - in as I much as I have felt pretty rotten for most of my life - enjoying this phase - and long may it last Did not realise I was feeling rotten - as it was normal to me !!
Here's to the anti-bodies - perhaps we should try celebrating them - and then they would be so embarrassed they will go away.....
All well and good, maybe they do cross the gut wall, but then so too will lots of the other substances from the cells and follicles of desiccated thyroid. So we should expect to see numerous antibodies to these other substances as well. After all, if the protein enzymes in our own guts allow those substances to get through, there is no telling what else might get through.
Not saying I know either way, I don't - but I do find it very difficult to believe that the TPO and thyroglobulin are selectively absorbed.
(And we need to remember that the importance of TPO and thyroglobulin is that they are pretty much unique to the thyroid. Hence antibody tests for the antibodies to them are highly specific to thyroid disorders. The untold numbers of other antibodies are simply ignored.)
What do we take in when we have our bacon sandwiches (with Gluten free bread, of course!)? The contents of every pig cell in the bacon could be contributing to substances absorbed and still "recognisable" to the immune system. Does that mean we have to avoid all all animal products (except those such as fats which we might be able to purify to a very high degree)?
Rod, the one theory I heard that seems plausible is that gluten breaks down into gliadin which is similar in molecular shape to the thyroid hormones. If that gets out through the gut walls it can cause a reaction and start the immune training and attack. The points you make, as usual, seem perfectly valid to me. I think at this point, like so many aspects of the thyroid world, we just don't really have a complete picture or accurate science. The fact that many on STTM, and Dr. Christianson's patients, have used NDT with Hashimotos and gotten good results would seem to indicate an obvious flaw in the argument against NDT. Another statement Dr. Christianson made in another video was that he got a few patients that had had their dose raised too quickly on NDT. Unfortunately he did not describe what 'too quickly' was exactly. As we have discussed before, conflicting views abound in the thyroid world. PR
PS I was listening to a presentation about autoimmune diseases a few days ago and the doctor said it takes an average of 7 years from the time they can see changes in the ABs until a patient gets a clinical diagnosis. Autoimmune diseases are on a rapid increase just as many other chronic conditions. All this in just the last 40 years or so yet no answers from the science world.
Thanks you for your post Rod. As PR4NOW says there is the gliadin which mimics thyroid hormones. Datis Kharrazian mentions in his book - Why Isn't my Brain Working - about the gluten molecules crossing the blood/brain barrier....and causing inflammation. I agree with your point of view - about selective absorption - tis all a mystery to me....I just try to learn from others.....but the understanding follows slowly and with gaps
I feel that the antibody stories have been very poorly told from the scientific point of view - we end up with versions which simply do not explain the issues. I am not in the least sure that antibodies are important except as a marker of lymphocytic attack. And, maybe, gliadin passing through the gut wall. Thyroid Manager doesn't seem to suggest the antibodies do anything in terms of causing thyroid disease.
In some conditions antibodies can shoot up in hours - and drop pretty quickly as well. Do we know anything about the very short term (hours or days) variation in antibody levels? If we don't then what can we say about two tests which are well separated (months or years)?
I recently posted a question about antibodies reacting to ndt with a good but inconclusive answer here. Was just googling for more info and was brought to this thread! Back to the mothership, ha! I wanted to say theres a portion of our immune system inside our gut called GALT, and I was wondering if that was delivering antibodies to the ground up TPO in ndt because in spite of how incredible I'm feeling now that I've switched, my antibody reduction has slowed considerably. I'll read up on the author that talked about it before, thanks for that tip. I also wanted to relate my own results in response to the comment that antibodies take years to reduce. Mine went from 2000 to 600 in around 6 months. I was on T4, T3, suppressed tsh down to around .26 but feeling terrible (in retrospect, lack of vitamins and couldnt convert t4 and too little dose of t3). Gluten free. With nothing to react to, they came down pretty quickly on me, which means its possible for at least some of us :}
What did you do in the end? I got rid of my depression, weight gain, inflammation, hair loss, chronic eczema, sore throat, painfully stuck morning eyes (don't know medical term for what was happening there! Sjorn's?), improved memory all 2 months into a gluten and cross reactor free diet. I had been diagnosed Hashi and subclinical hypo. I reduced my antibodies from 600 to 150, TSH 9.3 to 6.7 and FT4 from 11 to 12. FT3 of 4.8 was not retested by the lab (which refused!). 12 months in, my foot pain, which I had had for 3 yrs solid disappeared. With lowered antibodies and improved symptoms and vitamin/mineral levels I started WP Thyroid. Day 1 my afternoon slump disappeared and I could raise my arms without an immediate ache BUT my sore throat returned, then my stuck eyes (not gloopy, just stuck so tight that if I wake up with a start and open them the pain is UNBEARABLE because it feels as if I have torn at my cornea) and my eczema reared its head (not as chronic as before). Tests after 12 weeks confirmed my TPO at 484 (TG fell from 13 to 5), TSH 0.02, FT4 13.9, lab again refused FT3 so GP has reordered. I feel so deflated. TH17 is clearly playing up. Do I start LDN and hope I am not intolerant due to a MTHFR mutation? Such complications! Or ditch NDT for levo and T3? Do I have an autoimmune response to T4/T3 in the NDT? Do I need to raise higher (am on 2 grains) to lower antibodies? I don't know. Antibodies are a marker for the inflammation in your body, so whilst they are not always directly responsible for the destruction of the thyroid gland, it's what they unleash that is an issue, i.,e TH17 over activity and inflammation. I FELT better with lower antibodies, I KNEW they were up because of my symptoms, so yes I think it is important to monitor them and be aware of your symptoms hashimotoshealing.com/under...
I was on Levo for 18 years. I changed to NDT because I wanted to see whether I might feel better than I did on Levo (was still having hair loss, and slight brain fog). I felt terrible on NDT. My thyroid became swollen and sore, I had no energy whatsoever, and I had to stop working with the amount of brain fog I experienced. I didn't understand why, so I started reading all I could. What made most sense to me was that my immune system saw the ndt as the same "invader" as it did my thyroid gland, and made antibodies to destroy it, hence the flareup of my thyroid gland and feeling so unwell. I don't know if I am right or not. I am still trying to figure it out.
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