One zillion questions related to nutritional science and thyroid function....

Good news, I’m happy to announce that we now have a wonderful programme confirmed for our November British Thyroid Foundation patient information event in London:

2^nd November 2013: Nutritional science and thyroid function - We will have two speakers from the Department of Nutritional Sciences, University of Surrey: 

• Dr Sarah Bath will give a talk on: Thyroid function, iodine and goitrogens
• Professor Margaret Rayman will give a talk on: Selenium and thyroid autoimmune disease.

Full details are on the BTF website.

I am very happy indeed to have managed to get these speakers. The topic is one that comes up time and again at our meetings – many thyroid patients, me included, are really crying out for reliable information on how nutritional factors might influence our wellbeing.

my supplement drawer, sigh

My own experience has been that making dietary changes has been exceptionally helpful in relieving symptoms which I had assumed were thyroid related. And I take various supplements, but I’m never entirely sure which, if any, are really helping me. I'm quite embarrassed about my monthly expenditure on supplements actually. But what's a girl to do??

While there are lots of opinions and many people who can talk from personal experience about what may have worked well for them, or for other people they may know, I never know who to believe or what it’s sensible to act on. Often, just a little bit of probing will uncover that nutritional advice being merrily doled out may not have a scientific basis. Mind you that doesn’t necessarily mean it definitely won’t work.  

My experience with going gluten free proves, to my mind, that just because science doesn’t understand everything, that doesn’t mean that trying something leftfield may not sometimes be effective. I’ve spoken to enough people who have had experiences of being very unwell who seem now to be radiantly healthy, and attribute their recoveries largely to dietary changes, to know that those people are doing something right!

Oh but the thyroid is a funny old thing and so interlinked with so many other things. I want hard facts. I want to hear from proven experts. I won’t just believe what I’m told just because someone else is sufficiently confident about their own opinion or personal experience that they will tell me it’s the truth for me too. I know that if I do the wrong thing it can have profound and sometimes very slow to materialise unfortunate outcomes. I have a zillion burning questions and I want a proper scientist to answer them. I know we won’t have time to cover everything that I and the rest of the London Group want to know. But I am looking forward to learning as much as I can from our two very eminent and generous speakers, who are kindly giving up their Saturdays to come and talk to us about what they know.

Here are some of the questions I'm hoping we may get answers to:

•  Do we need to be careful not to eat too many goitregens? Are some worse than others?
•  I became more hypothyroid after I replaced dairy with soya for a period of months, might that have been a factor?
• Although I tested negative for celiac (while eating gluten) I feel much better since mainly cutting gluten and other fast burning carbs from my diet –  can you explain why that might be?
• I take 200 iu selenium every day, is that a good idea? what is a sensible dose and should my levels be monitored?
• Many individuals with borderline thyroid blood results, who are not prescribed thyroxine, consider taking iodine but we are told this could make them unwell, what advice would you give?
• I seem very sensitive to sugar but I’m not diabetic, is there an autoimmune connection?
• What moves are there to integrate nutritional science into the NHS  treatment of hard to treat thyroid patients?
• How big an issue might food intolerances be in relation to autoimmune conditions in general?
• How can we as patients help ourselves?

What questions would you add to the list?  We’ve got plenty of time before the meeting. This is a good opportunity to build a comprehensive list of what we’re all longing to know..... The likelihood is we will have at least one follow up talk nutrition after this initial one as it's such a big topic, although I've no idea who will be the best person to get, it's taken over a year to find Professor Rayman and Dr Bath. But by hook or by crook we will learn as much as we can, so that we can help ourselves to feel as well as possible!

Please post your thoughts below.

I'm also fascinated to hear from you if you have had an interesting (good or bad) nutrition related experience...

With love and light.

"Eat yourself fitter" a surprising tale of dietary adjustment

I've mentioned a few times of late how changing my diet has seemed to make a big difference to how well I've been the last few months.

But I haven't told you the whole story have I? Well here it is.

Before we start, I'd also like to share a charming little tune you may like to listen to while you read, "Eat Yourself Fitter", by punk heroes of my youth, The Fall. Okay, the soundtrack is entirely optional and may not be to everyone's taste (pardon the pun), but here's the full unexpurgated tale of what I am almost confident enough to call my recovery....

gluten free and #healthyyum breakfast

I first heard about how going gluten free can be worthwhile for some people with thyroid problems quite early on in my illness, late 2009 when I was so unwell I was desperate for a solution and spent a lot of time online trying to make sense of all the conflicting information out there. I heard about Gluten Free (or #GF) from several different sources, many of which seemed highly unreliable and in the end I kind of wrote it off as unlikely to make a difference and not worth trying.

How I wish I hadn't done that back then.

What I read was that good health is dependent on good gut function and low thyroid hormones will impact gut health which in turn also then makes it difficult for our bodies to use (natural OR medically prescribed) thyroid hormones effectively. Some people don't get on with gluten, for a complex and not fully understood raft of reasons. They may find going gluten free makes them feel a lot better and even if you have a blood test that says you are NOT intolerant to gluten you may find that you actually ARE and that it is worth giving it a try.

But I also read that giving up gluten was really difficult and there is no proof that it is worth doing.

Bizarrely my first ever appointment with an endocrinologist included her mentioning, in passing really, that it might be worth me trying to go gluten free, but she was also willing to prescribe me T3 medicine and I was  focused on that first and foremost. How wrong I now think I was. And I wish she had made more of a big deal about the idea and actually encouraged me to give going gluten free a try.

I started taking T3 meds alongside my thyroxine (T4 meds) in July 2010. Six months later I also started taking Vitamin D supplements after a blood test showed I was deficient. Both of those things appeared to make me feel better than I had done before, but the benefit of the T3 seemed to tail off after a while, even though the dose was increased. My weight slowly continued to increase (by more than 20 pounds over the course of two years, I got quite porky) and I still felt tired and a bit vacant a lot of the time.

Subsequently, at several of the patient information events I have since held for The British Thyroid Foundation in London, we have had several endocrinologists reiterate what that first one said to me - that trialing a gluten free diet seems to help a lot of thyroid patients and is worth trying if all else seems to be failing. Why, oh why did I not heed this advice sooner? The answer is that it was never really emphasised, no-one credible ever seemed very serious about it.

Early in 2012 I got a bug. A really horrible cough that wouldn't go. It lasted for weeks. My doctor tried me on antibiotics and steroids, she gave me an asthma inhaler which I was using, at one point, more than ten times a day, she also said she thought it might be partially allergy related and gave me antihistamines and a high strength nasal spray. I had to keep going back to the doctors, I was really quite worried, nothing seemed to shift this wheezy cough.

Then a random conversation with a pharmacists assistant changed my life.*

The pharmacy operated an allergy clinic. I knew this, I hadn't been. I had had enough of people telling me they knew just what would cure all my symptoms and all I had to do was pay for the benefit of their expertise or witch doctor medicine. When you're visibly poorly this happens a lot and I've become very cynical about promises of miracle cures, especially when there's a price tag attached.  One day I'll write about my experiences of alternative  medicine and you will howl with laughter (or cry real tears) at my past gullibility.

But this girl had nothing to gain. She just worked in the shop, she wasn't on commission. She'd seen me several times over the preceding weeks, picking up different medicines for my cough and expressing frustration that it still hadn't shifted.  I mentioned to her the doctor thought there was an allergy component to the illness and she told me how the allergy clinic at the pharmacy had helped her. Basically she'd been diagnosed with a load of food intolerances by the pharmacist, after years of terrible health, and now she feels radiantly healthy and she recommended I book an appointment. £20. Cheap.

I saw the guy the next day. He said lots of people with unexplained symptoms have food intolerances, usually either to wheat or dairy. He said he recommends avoiding first one then the other potential irritant for two weeks each and after a month of noting symptoms and food intake we would probably know if I was one of those people.

Blimey, it was miraculous. In the first two weeks I ate no wheat. My cough went, my itchy eyes cleared up, I had more energy. I decided that wheat definitely wasn't good for me and I cut it out from then on. Whenever I forgot and ate a bit I would get itchy eyes and feel rotten. It was totally straightforward.

In the second two weeks I also cut out dairy. I didn't notice much difference. I don't eat a lot of dairy anyway. It seems dairy is not really an issue for  me. Everyone is different. At the end of my first wheat free month I'd lost seven pounds. Just like that.

I was delighted. As well as the symptom reduction I was thrilled about the weight loss, which continued at the same rate, slowly and comfortably, in the following weeks. A couple of months later I decided to go one step further and do a couple of weeks of a very low carb diet to see if I could shift a bit more weight. I am very vain and the weight loss was a great incentive. After another month I'd dropped another seven pounds and I realised that I'd accidentally gone gluten free.

Since then I've continued with a gluten free diet which is also pretty low in fast burning carbs. I've lost all the weight I'd gained. I look and feel MUCH better. I don't have itchy eyes or brain fog anymore.

I've read that when you have a food intolerance you can eat a little bit of what you're intolerant to once you've avoided it for 3 months or more. So once in a blue moon now I'll eat a bit of nice bread or flapjack if I'm out and it's being offered. I'm  not rigid about the low carb thing, I'll have roast potatoes with my roast dinner at the weekend, if we go out for dinner I'll have a pudding and eat whatever else turns up on my plate.

I don't eat commercial "gluten free"  food substitutes like gluten free bread or pasta because I know that they are just other kinds of fast burning carbs that I may not actually be intolerant to but will not be good for me.

I think I probably have more low level food intolerances yet to be identified, my skin is still not perfect, I still get a bit phlegmy some days. But basically I'm back to being slim and looking healthy. My digestion is pretty normal. My energy is much better. I'm a hundred times clearer headed. I'm continuing to pay attention to how I feel after I've eaten different things and I hope in time to work out what else might be affecting me adversely to a greater or lesser extent so that I can improve my health even more.  I'm trying to find an expert in the field of thyroid and nutrition to come and talk to our group.

On the whole  I am now a poster girl for going gluten free and low carb. I know it doesn't work for everyone but if you are one of those people who's thyroid blood tests appear to be "normal" yet you still feel unwell I think this is something well worth your while trying. And remember, don't fill up on artificial commercially produced high carb "gluten free" alternatives as they are likely to keep you feeling unwell. Go for natural healthy food that won't play havoc with your blood sugar.

Great sources of more information that I have found useful include the books Wheat Belly and the South Beach Diet.   

There are lots of great websites and groups for swapping healthy eating inspiration online. Since first writing this post I've now set up a #healthyum page on this blog to share some of my own invented recipes and highlight some of my favourite sources of further healthy eating related information and support. Let me know if you have other specific information sources you'd like me to add to the page.

*By the way, there's another great track by The Fall called Mr Pharmacist..... rock on.

with smiles

Lorraine