Foggity fog, damn creeping fog.....

I have been quiet on here again, did you notice? I didn't! Ha ha. No really, I didn't notice what was happening to me. I was slowly getting a bit hypothyroid again the last few months. It crept up on me. Slowly like a snake. it wound it's way around me and squeezed and I didn't notice I was fading away.....

This illness is nuts. Seriously. I think I've cracked it then it's like I've fallen through another trap door and there's a whole new set of lessons to be learned, assumptions to be adjusted, new stuff to be taken on board. And I just pick myself up and carry on.

So, to update you all...... Remember I told you I had my meds reduced in September last year? After going gluten free I was feeling so much better. I'd been able to come off T3 meds and was taking thyroxine only and feeling good and then became concerned I was actually becoming over active so was actually able to reduce the thyroxine dose slightly. And I was SO PLEASED!! It was like, hurrah, hallelujah I am on the mend. I have cracked this thing.

Well I carried on feeling pretty good for a few months. Over Christmas I abandoned my gluten free diet and I felt a bit rubbish again but I was relaxed about that. I just though, hey ho, festive season is here, I shall eat what I like and put on a couple of pounds and then go back on the straight and narrow afterwards and it will be fine.

cakes and mulled wine at Christmas

Then after Christmas we had a death in the family and I had to go overseas for the funeral and obviously while I was there I just ate whatever came my way because I wasn't going to be fussing about my diet when my family were grieving. And we all got into comfort eating a bit. Why not, right? Hard times call for desperate measures. Cake and chocolate is good medicine sometimes.

I got home towards the end of Jan and I just put the fact that I felt brainfoggy and tired down to the poor diet over a few weeks and I assumed it would sort itself out as I got back on track with eating well again.

It was mid March before I realised that something was wrong. I had been tired for weeks. It was getting worse not better. I was becoming forgetful and a bit clumsy. I would be walking up the hill to our house and feel like gravity was pulling me back down it. Ooh, err, better get my thyroid checked.

I'd had it checked before my trip abroad. It, (my TSH, I won't bore you with my other numbers), was 1.7. Up from 0.9 the previous September. Up from the very suppressed 0.01 or thereabouts it had been for the previous 18 months. I thought 1.7 was a pretty good number. If I felt good at 1.7 then  hurrah. My endocrinologist reckons being between 1 and 2 is probably optimal and that makes sense to me. I'd been too suppressed when I was taking T3 and it looked like it was slowly adjusting to a more sensible level.

But in March it had jumped to 3.4. And I felt awful. So now my dose has been ever so slightly increased again. And I am slowly starting to feel better. Phewwew.  Hopefully it won't take long before I am properly back on track.

Lessons learned:

1. Meds adjustments can take a long time to reveal their full effect on the body. That's why it makes sense not to make lots of changes in a short space of time. We  need time to adjust. 
2. Small adjustments can make a big difference. I was taking alternate doses of 100 and 125 micrograms back in September and we dropped down to 100mcg every day. That was, in hindsight too big a drop for me. My endocrinologist has now suggested I take 100mcg 5 days a week and 125 at the weekend. I am hearing more and more about people on very finely balanced doses. We really need thyroxine to be available in smaller doses.  (this is something the BTF is talking to drug companies about and can hopefully influence) 
3. I need to listen to my body more and take action more quickly if I think I might be going hypo. My husband actually said to me in January he thought I might be getting ill again, but I poo pooed  him. I was so focussed on a positive view of the situation "I'm fine, I'm fine, I know what's going on here, I just need to eat less cake/ get over this lingering virus"  (oh fool me, there probably never was a virus, hypothyroidism was creeping up on me again). So as well as listening to my body more I also need to listen to my nearest and dearest who knows me so well and is so sensitive to what's going on with me. I hate going to the doctor because I don't want to be seen as a sickly person. But I am a sickly person and I need to pay attention and go for help when it's neccessary as help is at hand and I am going to be fine now. I know it. :) 

Hey ho, that's what's been going on with me. What's been happening in your world? Send me some #thyroidlife love please. I feel like I need it! 

#Hope :) 

"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