Hi all,
I'm finally getting round to ordering a testing kit for vitamins and FT3. I had a big heart to heart with my parents this morning and realising how much this diagnosis/symptoms is getting me down and how much I just want my life back .
My question today is, is it worth getting a food intolerance test to find out if I need to remove dairy, soya etc? I am already gluten free from having Celiac disease. Is this a good way to find out?
Thank you as always for your amazing help and time,
It's advised that we Hypos avoid soy in all it's forms (except perhaps fermented soy). So I'd exclude soy anyway. The NHS tells us:
nhs.uk/medicines/levothyrox...
Is there any food or drink I need to avoid?
soya in food and supplements may stop levothyroxine working properly. If you regularly eat soya or take soya supplements your doctor might need to do extra blood tests to make sure you're getting enough levothyroxine.
Why not just experiment with excluding dairy rather than go to the expense of testing? Excluding it, noting any changes, then reintroducing to see if again there are any changes, will tell you if you need to exclude dairy completely.
I think I just feel that there are so many variables that it would be hard to know what his causing the improvement (if there is one). I have just started levo 50mg, so if I just exclude dairy and soy now, how will I know if any improvements are from eliminating the food, or from the levo?
I'm sure this won't come as a surprise but I specifically asked my GP if there were any dietary changes I would need to make and she emphatically told me 'no' with an aloof shrug of the shoulders, "it's an auto-immune response,.so....no" (duh). So I just feel like I'm not going to get any support from that direction.
Also, I read that it might not be all dairy, so surely you would have to give one thing up at a time, milk/cheese/yogurt/eggs? This is going to take a while. I know I keep reading that healing is going to take a while, and I do know I can't bypass that, but if a test would give me a head start then I think I might be willing to pay for that.
I'm just not quite clear on whether it is a food intolerance causing people with Hashis to be unable to consume these foods, so whether it would show up on a test?
Holiday74
I have just started levo 50mg, so if I just exclude dairy and soy now, how will I know if any improvements are from eliminating the food, or from the levo?
In that case don't stop dairy at the moment. Do exclude soy though because it is very likely to affect absorption of your Levo. You should be retested 6 weeks after starting Levo so see what your levels are like then but do be sure to test as we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
healthunlocked.com/thyroidu...
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw (if taking NDT or T3 then last dose should be 8-12 hours before blood draw). Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
Also, I read that it might not be all dairy, so surely you would have to give one thing up at a time, milk/cheese/yogurt/eggs?
No, when looking into food intolerances like this you'd exclude them all then reintroduce one at a time and note if that makes any difference. If all is well you'd continue with that one then reintroduce another item, etc. But I would put this on the back burner for now, get settled on Levo first.
Thank you, that helps a lot. I have a blood test booked for the end of the month, when I will have been on the levo 8 weeks, as per GP's instructions. I have just discovered all the gluten free products I get on prescription (I'm in Wales) contain soy, so that throws a spanner in the works!
There's no test for soy. The soy effect is the same for everyone, as far as I know. What happens is that it workd on a cellular level by stopping the hormone getting into the cell. So, you can have good levels in your blood, but still be hypo. If you have a normal, healthy, working thyroid, it will make more hormone to compensate - up to a point. But, it can't work that way if you are dependant on exogenous hormone. Besides, soy has so many other downsides, it's really not worth it.
Eggs are not dairy. They do not contain lactose, or any of the other constituents of cows milk that affect people. Eggs are a good source of nutrients, so unless you react badly when you eat them - like my daughter does - it would be a shame to exclude them. And, even she can tolerate them when used in cooking, for a cake, or something. She just can't eat them boiled, fried or scrambled, etc.
You're right, not all dairy - i.e. products made with milk - are created equal. One doctor I say, who takes a special interest in that sort of thing, told me that liquid milk and yoghurt are the worst. You should be OK with cheese, cream and butter. But, rather than trying each form, you could narrow it down by deviding dairy products in into those two groups, and eliminating each in turn, to see the effects. Even if you are only on 50 mcg levo, I think the absence of a reaction to dairy would be difficult to miss. So, give it a try - what have you got to lose? 
Thank you for your help greygoose, I really do appreciate it, as I really feel like I'm lost in the maze here. I have just checked and all the gluten free products I get on prescription (I'm in Wales) contain soy. Is it this kind of soy I have to exclude or things like tamari? Or both?
I don't even understand the science of why we may have to exclude dairy. What's the link with Hashis?
I think the absence of a reaction to dairy would be difficult to miss.
I don't even know what to look for, I just feel like I'm my body is a scramble of aches, pains and brain fog, so where do I begin finding the thread of dairy intolerance? Sorry, I'm not directing these questions at you specifically! It sounds like I'm grilling you and I don't mean to come across like that, I'm just so confused by it all, I feel like I've landed in the middle of the book and trying to retrace the steps back to the beginning.
Is it this kind of soy I have to exclude or things like tamari? Or both?
That's a good question. Wish I had the answer! I used to believe that it was just unfermented soy that was the problem. But, then I read somewhere that the fermentation process made the bad bits of soy even worse! However, now I really think about it, they didn't specify what sort of problems with soy they were talking about. So, maybe it's ability to block thyroid hormones wasn't one of them.
All I can suggest is that you start by avoiding unfermented soy, things like soy protein, soy flour, soy oil, etc. I know how hard that is in the UK! I live in France and soy flour isn't autmatically added to everything as it is in the UK. But, it's cheap, that's why it's used in so many thing.
Do you consume a lot of fermented soy?
I don't even understand the science of why we may have to exclude dairy. What's the link with Hashis?
I'm not convinced there is one. It's just that it causes symptoms in a lot of people - like gluten. But, avoiding dairy and gluten won't cure or treat your Hashi's, it might just make youf feel better in yourself, eliminate certain symptoms caused by the dairy or the gluten. I think it's just that having Hashi's makes you more sensitive to these things. But, it doesn't affect everyone. I tried both dairy and gluten-free diets, and neither of them made me feel any better - I do have Hashi's. And, I didn't feel any worse when I started eating them again. So, it's worth a try at cutting them out, see if it helps.
I just feel like I'm my body is a scramble of aches, pains and brain fog, so where do I begin finding the thread of dairy intolerance?
I think it will be made obvious by its absence. If you see what I mean. Like banging your head against a wall, it's lovely when you stop! But, don't over-think it. Just do it and see what happens.
Don't worry, I don't feel in the least bit grilled. I'm used to being asked these sort of questions, and answer when I can. And, if I don't know, I'll just say so. But, it's perfectly normal to feel lost and helpless in the beginning, and have a ton of questions to ask. I still have questions I've never found the answers to, even after 20+ years of trying. There's so much that just isn't known about this disease. But, what answers there are, you'll find on here. The Hive Mind contains so much more information, experience and knowledge that any one doctor could ever have. Especially as they don't make the effort to learn!
Hi Holiday,
I just wanted to share my experience here.
As soon as I got my diagnosis I went gluten free. 1 year later I wasn't sure if I could feel any benefit or not so I reintroduced it. I didn't feel any better or worse for doing so.
I am just past the 2 year anniversary of my diagnosis and have only just felt able to overhaul my diet. I've been on the AIP diet for a week and I am feeling the benefits already.
Giving up gluten immediately only made me more stressed and miserable. I was so exhausted that it was just another headspace consuming chore.
Like Seaside Susie, I would encourage you to take one step at a time. Give it a few months to get up to a decent dose of levo and go from there.
Remember; just because a good percentage of hashis do better without dairy doesn't mean you're one of them.
Thank you so much for sharing your experience Witchinghour, it's such a relief to know I'm not alone 🙂
I was so exhausted that it was just another headspace consuming chore
This is exactly how I feel, I'm reading and asking questions and getting so overwhelmed with it all I'm having to step away again.
I know I need to be a bit gentler with myself, time to start putting that into action I think!
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