Still no change, 18 days into a gluten free diet.

[Runningcath55]

I have very high antibodies and TSH, 966 and over 10 and on the advice of Grey, who replied to my first post, I have been on a gluten free diet for last 3 weeks. Also I've increased my NDT dose to 3 grains from 2 and have done no exercise. Still not lost an ounce. Getting pretty fed up with all this. Blood tests are expensive, so can't have every couple of weeks. Going to stock up on the recommended vitamins and see if that helps. Right now wishing I was Hyper!!! I think my metabolism has just stopped working altogether.

[MULLIONAIRE]

Hi,

Would not give up yet on the gluten free diet. It took many months before it made any difference to me. Not worth having tests as you will eventually discover by exclusion if it is the problem. A couple of times tried to reintroduce wheat and gluten back into my diet, quickly get severe muscle pain and stomach problems. My endocrinologist wants me to have a biopsy as it is the only way to correctly identify whether you are coeliac. However, I cannot face the problems of being so unwell eating wheat and gluten before the test.

Losing weight is a problem, but I now go to Slimming World, great food easily adapts to wheat and gluten free and I have lost two stone in weight.

Good luck, with it all.

[helenbones]

I think they reckon it takes up to 2 years for the gut to heal from damage by gluten (6mths for children) so really think that 18 days is not really long enough. If there has been damage this will affect your body's ability to take up nutrients.

Do keep up with it longer and keep strictly gluten free - even just a little can irritate the gut at this stage.

Do wish you luck as it can feel like a long road for both getting thyroid levels right and soothing the system from gluten damage, but is worth it in the end.x

[Jodypody]

Going gluten free will help your symptoms but it's not necessarily the gateway to weight loss depending on what you replace gluten with. Eat too much of anything and you won't shift weight. It's possible to lose weight despite being hypothyroid. It's flippin hard work even when you're not.

[faith63 in reply to Jodypody]

Jody..if you don't have an issue with Gluten, stopping doesn't do anything. I lost weight doing nothing, once my dose of t3 was good.

[Jodypody in reply to faith63]

You've responded to the wrong person.

[Ruthi]

You need patience - lots of it. It was probably six months before I really felt the benefit of going gluten free. Its not just a question of 'remove the gluten and feel better as soon as it is out of your system'. It can take a long time for the antibodies to reduce, and even longer for the gut to heal.

As for weightloss, that is a very hard one. In addition to your thyroid status, there is the whole business of cortisol and/or insulin levels, and the body's tendency to try to hold on to excess weight. I have found it has taken a year or more before I was able to start losing weight, and then it took several goes to find a regime that worked for me. If you have stopped gaining, then things are going well. Give yourself a rest, and start dieting a few months down the line.

Personally I have found the Adrenal Reset Diet is better than Slimming World, which tends to concentrate on ways to cheat - lots of processed food and synthetic ingredients which are not a good way to go in the long run.

[greygoose]

Cath, I think you misunderstood my 'advice'. I actually said "Going gluten and/or dairy-free helps some people. It doesn't help everyone." And I suggested you should try it for at least three months. 18 days isn't going to do much.

And I suggested walking and swimming rather that going to the gym because your T3 is low and going to the gym uses up your T3, but you're not going to raise your T3 in 18 days just by stopping going to the gym. It's going to take a lot longer than that.

And nobody suggested you get tests every two weeks! That is just lunacy. It takes at least six weeks for a dose to become fully active. And you increased by one whole grain? It might have been better to go up in half grains.

What recommended vitamins are you talking about? We usually suggest people get tested before starting suppléments - vit D, vit B12, folate, iron and ferritin. Because if you start supplementing before you get tested, you'll skew the results.

I'm afraid you're going to have to be more patient. It sometimes takes months - even years - to get sorted. Nothing happens rapidly in the thyroid world.

[Runningcath55 in reply to greygoose]

Hi Grey

[greygoose in reply to Runningcath55]

Hi Cath

[Runningcath55 in reply to greygoose]

Hi Grey,

Patience is not one of my virtues!! I realize that it will take a while to see any results, but seeing as I have been trying to lose the 30 pounds I have gained over the past few years, my patience is running thin. I was 'dieting' like crazy until advice from this forum told me that there was no point.

On a positive note, I haven't actually gained any weight in the past few months. I increased my NDT by 1/2 a grain for 17 days, and now have gone up by another 1/2. Will stay on this (3 grains) for another 3 weeks.

My comment about the blood tests is that I have no idea whether what I am doing is helping or hindering.

Bought a bunch of the vitamins recommended from this forum, so have started them too.

No change in energy levels, but was thinking a bit of gentle jogging? 20 mins a few times a week? I am a teacher, so am on the go all day long. Used to do crossfit, but giving that a break. Just feel so lazy!

Just want my metabolism to have a kick start!!!!!

Thanks for all the advice.

[greygoose in reply to Runningcath55]

You cannot 'kick start' (god, I hate that expression!) your metabolism with jogging! It just doesn't work that way. You're not lazy, you're sick. And you have to do what's best to combate the illness. Patience has to be cultivated if you want to get well. And you are not going to lose weight with low T3 no matter what you do. This isn't me being nasty, this is fact. It's the low T3 that is causing low metabolism and jogging for 20 mins a few times a week is going to lower your T3 and that will lower your metabolism even further.

There's no point in having blood tests every few weeks because the effect the dose increase is having won't show up in the bloods for about six weeks after the increase, so not only would you be wasting your money, you would be giving yourself a false idea of how you are progressing. It's just common sense.

You have to learn to read your body, know how you feel and when you feel better and when you feel worse. You cannot self-treat if you Don't know your body. It will tell you what it wants, if you learn to listen to it. There was a time when blood tests didn't exist and people had to grope in the dark to find what was good and what was bad by listening to their bodies.

So what vitamins have you seen recommended on this forum? On this forum we recommend people get tested before supplementing so that you Don't over-dose on certain things like D3 and selenium, and that you take enough to cover your deficiency. How can you judge how much to take if you Don't get tested? (Yes, I am well aware that I'm contradicting myself there. But you need a base line. I wouldn't suggest someone start taking thyroid hormone replacement without an initial test, either.) If you start supplementing before you get tested, you will skew the results and be no better off. Do you know what you're doing with the vitamins? What to take with what and what works with what?

These are the basics of recovery, but if you Don't respect them, you will be shooting yourself in the foot.

[win_4ever]

i also have got fed up and now am self medicating. I stopped taking levo and researched web for vits and minerals that boost thyroid I am taking natural vit E with selenium pills, slow release vit C,vit B complex with B12 also dessicated beef liver pills for iron and protein powder and sea greens which I sprinkle on my food for iodine and now started on lactobacillus acidophilus pills to cleanse my colon and replace bad bacteria into healthy bacteria in my gut,which is where the thyroid,so I have read online is activated,which means your intestines need to be healthy.I am waiting delivery of NDT, so cannot comment on that until tried. But coming off levo and supplementing has made me feel so much better in myself in that I dont get fog brain now and my stomach seems to be getting smaller after two weeks of this. I am 75 YEARS old so I know that doctors wont treat me with T3. I will update with any progress or not later on, I just hope I dont need to go back on levo.

[Hidden]

Hi win4ever, just wanted to ask do you have hashimotos thyroiditis ? I think you are great with all you are doing for yourself. I am amazed at 75 just how pro active you are. Well done. I hope I can be as good as you.

Take care

ps I am on nature throid, it's well better than Levo any day. I'd never go back.

[locky8]

Hi, I was told earlier this year that my antibodies tested positive. I'm still not sure what this means but I too have cut wheat and gluten from my diet. But there is also another thing that could be sabotaging your weight loss and that's sugar. In January this year I joined Kick Start Fat loss. A weight loss group that's more of a way of life than a diet. Since January I've lost 3 1/2 stone and I never would have thought it possible. I feel a lot better than I have in years. I'm also now on t3 and go to bed earlier than I used too and I believe all of these things contributes to how I feel. I still have odd days where I feel a bit rubbish but on the whole I feel so much better. If there isn't a kick start franchise near you,Google Rachel Holmes. She's also on Facebook and Twitter. Her eating advice has changed my life. The basic science of how it works is this, your liver is your fat burning organ and if you let it it will burn fat 24/7 but if you eat toxins like sugar alcohol and processed food your liver has to get rid of those first. That's when your body absorbes the fat as there's no way to get rid of it as your liver is too busy. If you cut out the toxins and sugar your body is one big fat burning machine. I eat lots of veg, good quality meat, salads and even cakes that use other flours than wheat and more natural sugars like honey and agave syrup. For instance in a 99 calorie low fat yoghurt there is 12.9g of sugar and in a full fat natural yogurt there's 3.6g As I said its a way of life now and really worth it. Rachel quite often does 7 and 14 day free trials so it's worth a go as you have nothing to lose ( except weight!)and everything to gain. I was 14 stone 7 in January and I'm now 11 stone( hopefully less as it's weigh in day tomorrow). Wishing you all the best of luck and hope this helps you as much as me. 😃

[Inna]

This may be relevant for you, in case you have not read it yet thepaleomom.com/autoimmunit...

[faith63]

Going Gluten Free doesn't help if Gluten is not an issue for you. I found out thru testing, that i can't eat dairy, oats, coconut or walnuts..my son is both gluten and dairy. Going GF had not helped me one bit. You don't have to get blood tests. Go by symptom relief. If there is none on ndt at 4 grs, or you have hyper and hypo symptoms together, you may need t3 only. That being said, for me, i have symptoms of illness do to having this autoimmune disease. Vitamins, raised my labs to normal, but didn't change my symptoms, unfortunately.

[Eddie83]

Getting well after going GF is a long-term process. Don't be impatient.

After I went GF, I had TPO antibody tests every 6 months. It took 18 months for my antibodies to fall back to zero. BTW, did you have TPO and TG antibody tests at the time you went GF? If you don't have antibody tests just as you go GF, then you have no way of seeing if your antibodies trend downward after gluten is gone. That is important, because gluten is not the only pollutant which can cause autoimmunity; it's really important to know if gluten did the trick, or if you should look elsewhere.

But antibodies are the tip of the damage iceberg. After I went GF, it took close to 10 years to mend all the problems (nutritional deficiencies and esp. hypoproteinemia caused by enteropathy, inability to convert even small amounts of T4, adrenal fatigue/arrhythmia, ad nauseam) I had collected. Maybe it won't take you that long, but your recovery is likely to be over a period of years, not days.

[faith63 in reply to Eddie83]

eddie..going gluten free doesn't help if you are good with gluten.

[Eddie83 in reply to faith63]

Exactly. That is why I suggested to Runningcath55 that she should know her antibodies before going off gluten. If gluten isn't the problem, her antibodies will not decrease, and she will have to look elsewhere for other foods or pollutants that are causing the antibody problem.

[faith63 in reply to Eddie83]

I didn't read every comment well enough, i guess. I WISH Gluten was my problem and i could feel better, but not my luck.

[Runningcath55 in reply to Eddie83]

My antibodies were 966 when normal is 0 - 35!!! that is why I am trying a gluten free diet. Was just wondering when I might see any improvements, but from all the advice and comments, I guess I will have to be patient.

I just need to lose weight, and get my energy and brain back!!!! So hard to know if things are changing though. I've felt like this for so long, it is the new normal.

[Hidden]

I have been on a gluten free diet for over a year now and my gut is only just now feeling settled. It can take a while for the gut to heal and for me it was a very gradual process.

[Castlepoint]

Hi I have been gluten free for a year and a half. It has taken at least a year for my body to feel better - don't forget you could have had years where your body could have been struggling with gluten. People say to me that I look loads better even though I struggle with Hashi's. I have been tested & negative but I would never go back now for anything. The benefits for me a too numerous in every aspect, bloating,pain,allergies to food etc etc be patient & you could see benefits

Castlepoint

[Hidden]

I think it has taken ten years for my gut to heal since going gluten free - in that I now notice that if I make a misake and eat a food with it in now I no longer get immediate painful bloating. Not that I'm thinking I'm cured, or will ever risk eating gluten again. It isn't a weight loss diet though. It removed the brain fog, but while on it my weight has gone up and my antibodies have risen. 18 days - far, far too early as everyone says. Maybe try eating a biscuit after eight weeks and see if you have any reactions. They won't necessarily be immediate.

My friend who had what seemed almost to be a different kind of hypothyroidism to the insidious, creeping kind - sudden onset after a bout of viral infection caught abroad - iron levels fine, no hair loss, high energy levels previously - took levo for a year until her TSH was right down, then did the fashionable two day fast diet and is looking great.

On thinking hard she remembered that as a teenager she used to react to milk, so she cut that out - but still eats gluten. We maybe all have slightly different triggers playing into hypothyroidism. I like the liver suggestions above.