Symptoms and Weight

[Dee1962]

I'm awaiting an appointment with the endocrinologist as I have recurrent thyrotoxicosis. What I'm confused about are some of the symptoms. For instance, I'm a bit overweight and am going to Slimming World, but losing very little (just a half pound a week) despite eating very healthily. As I understand it, thyrotoxicosis should be making me lose weight? I have a swollen thyroid, itching, dry eyes, palpitations, insomnia, very thirsty so consequently up and down all night, tired but on the go all the time, and terrible sweating, particularly at night. My question is, could it be the thyrotoxicosis preventing the weight loss?

[Aurealis]

You probably have an enormous appetite, hence weight gain despite thyrotoxicosis. On different occasions I have both gained and lost weight when my thyroid hormones have been too high. It’s a fallacy that hypo means weight gain and hyper weight loss, either can happen. The rest of your symptoms sound like high levels of thyroid hormone.

[Dee1962 in reply to Aurealis]

Thank you. As I'm with Slimming World, my diet is pretty good - plenty of fruit and veg, no extra fat or sugar - so I'm a bit surprised. In fact, they told me last week that I wasn't eating enough!! It's disheartening when I don't lose the weight like I should be. I'm trying to hold off the carbimazole until I've seen the consultant, which is in just under six weeks.

[Aurealis in reply to Dee1962]

Why do they feel you’re not eating enough?

[Dee1962 in reply to Aurealis]

I follow a healthy eating plan (Slimming World code for 'diet'!), and you get loads of info and recipe books, etc, and they try to tell me I'm not losing much because I'm not eating enough. Sounds weird, I know, but kind of makes sense if you read their info. I've eaten that much fruit, veg, lean meat, etc, that I feel like a compost bin! I've cut out cheese, biscuits, cake, chocolate, crisps, I don't have refined sugar at all. We're allowed between 5 and 15 'syns' a day, as well as normal meals, which is a points value given to foods, and I usually have about 8 or 9. We also have a healthy 'A' option (dairy) and a healthy 'B' (cereals, breads, etc), which you choose one of each a day, all weighed and measured out. So I'm doing everything right. Just so frustrated the weight is not shifting, only about a half pound a week.

[Aurealis in reply to Dee1962]

I could only lose weight with Slimming World by reducing SINS. But dieting is the enemy of good thyroid balance.

[Dee1962 in reply to Aurealis]

I'm allowed up to 15 per day, but mostly only manage 8 or 9.

[greygoose]

Slimming World is right when it says that if you don't eat enough, you will put on weight. You body will go into starvation mode and hang onto every calories you do eat.

Where they are wrong is to put you on a low-fat diet. Contrary to popular belief, eating fat does not make you fat. You need fat, it is essential to your health. Low/no fat diets can lead to all sorts of problems, including depression and suicidal ideas. No-fat can kill you.

On what is your diagnosis of thyrotoxicosis based? Have you ever seen your blood test results? Have you had your antibodies tested? It really is essential to know what your results are, because doctors know so little about thyroid and often misdiagnose. And they have a tendancy to use the sensationalist term 'thyrotoxicosis' for just a low TSH. You ought to know exactly what they tested, and exactly what the results were.

[Dee1962 in reply to greygoose]

Thank you. I'm afraid I didn't ask for a printout of the results. It was a blood test. I had thyrotoxicosis 10 years ago and was on block and replace for 18 months which worked well. I was then supposed to have regular blood tests - 3 monthly, 6 monthly, then annually - which they reminded me about. However, I didn't get a reminder for two years and was told it had recurred a couple of weeks ago. I'd been feeling exhausted, but hyperactive, itchy, etc. I'm seeing the endocrinologist on 24th May - I'm told I was lucky to get an appointment so soon. I may go back to my gp this week and ask about a printout. My thyroid has, I think, become more swollen in the last couple of weeks. I do remember being told last time I had it, that if it recurred I'd most likely need to have it removed, but I'll see what advice the consultant has. The medication I took before, carbimazole and thryoxine, made me feel a bit odd and I had palpitations for a while.

[greygoose in reply to Dee1962]

You should always, always ask for a print-out of your results. From what you've said about this problem, it could be either Hashi's or Grave's, and you need to know which, because doctors often don't. So, as an easy way out for them, they whip your thyroid out, and then you're hypo, no argument! And that might be OK, if they knew how to treat hypo. But, for the most part, they don't. So, it's in your interests to know exactly what is going on. If you live in the UK, it is your legal right to have a print-out of your results. They are yours.

[Dee1962 in reply to greygoose]

Thank you, yes, I'm in the UK. Grave's was mentioned last time because I had sore eyes. This time it seems just my right one, which feels like it won't open in the mornings, and then feels like I have lots of grit in it. Very sore. I've never heard of the other condition you mention.

[greygoose in reply to Dee1962]

Hashimoto's Thyroiditis. It's an autoimmune disease, like Grave's, but is basically hypo, where Grave's is hyper.

With Hashi's, the immune system is trying to kill the thyroid, causing it to dump large quantities of hormone into your blood from time to time, meaning that a blood test can show you to be hyper. For this reason, doctors sometimes confuse the two. But, with Hashi's, after being 'hyper', you can go through a euthyroid period, and then go hypo again, and at some point, the cycle will start again.

Also, doctors often test for Hashi's antibodies, thinking they're tested for Grave's.

[Dee1962 in reply to greygoose]

Oh, I see. That would make sense then, with the weight thing? I will certainly mention it when I go for my appointment.

[greygoose in reply to Dee1962]

Not sure you'd get much joy from 'mentioning' it. Just ask for a print-out of your results. And, it must be a print-out, not verbal or hand-written, because mistakes can be made, that way.

[Valarian in reply to Dee1962]

Your symptoms do sound quite hyper, but as others have suggested, the only way to be sure is to ask for a printout of your results and associated ranges. At this stage, the chances are they will only have tested TSH and FT4, but your endo should test FT3 as well, and hopefully antibodies (TSI or TRAb for Graves’).

Grittiness can be a symptom of Thyroid Eye Disease, and if there is any chance you may have this, RAI may make things worse. This leaflet contains info on symptoms and treatment. btf-thyroid.org/information.... You definitely need to mention this to the endo, but in the meantime, you could arrange an NHS eye test at a good high street optician, and tell them you may have Graves’. It might also be worth taking some over the counter hay fever tablets, perhaps at bedtime - if the grittiness is due to an allergy, the antihistamines should relieve it, but they won’t do anything for TED. If you smoke, and there is any chance you have TED, you really do need to stop.

If you’ve been in remission from Graves’ for a while, I would ask for another round of Block and replace (carbi plus thyroid supplement) before even thinking about RAI. The thing is, while some people have had good results from RAI, once you’ve had it, there is no turning back.

As for your weight, the interaction between weight and thyroid disease is a complex one. The increased metabolism of being hyper can cause significant weight loss, but most people end up putting the weight back on again. The fact that being hyper can lead to a huge appetite, which doesn’t always disappear as thyroid levels drop, doesn’t help. Also, being hyper makes most of us too tired or weak to take much exercise. Add to that the fact that if your body believes you are trying to starve it, it will try to conserve energy, and you may not lose weight as fast as you expect. The thing is, if you are hyper, your calorie needs may be higher than usual, so if you are already on a calorie-restricted diet, your body may very quickly decide you are trying to starve it. For a couple of weeks at least, it might be worth trying a really well-balanced diet, including carbs, protein and healthy fats, at or very slightly below the number of calories you you need to maintain your current weight.

[Dee1962 in reply to Valarian]

Thank you for this info, it's really helpful. I think the best thing I can do for now, is to write everything down, then I can talk to the endo about it when I go. Last time, I saw a professor, so hoping it's him again.

[Valarian in reply to Dee1962]

It’s really important to ask what treatment is being proposed, and why, and whether there are any alternatives. I’ve discovered my endo is always willing to explain things if I ask questions, but sometimes if you don’t ask, they seem to assume you don’t want to know. Take paper and pen with you (thyroid problems, whether you are hyper or hypo, play hell with short-term memory) and maybe consider taking a partner or family member as well , to help you remember what to ask, and what you are told.

[Dee1962]

Ok. Thank you, you've been really helpful.