Over active thyroid

[WestBurrafirth]

Am feeling very fed up. Having worked hard to get my levels down to normal I was down to only 5mg Carbimazole and hoping to stop them altogether, however having just had a blood test my levels have now gone back up and I've been told to increase dosage to 20mg. Looking back at the last month the only thing I have done differently is to be lax about not having any gluten in my diet. I am wondering if this is the reason for this increase. I am now going to go back to my strict regime. Any thoughts for anyone?

[Greekchick]

Hi West,

Have you been particularly stressed or doing any extra physical exercise etc? Or just normal routine? That can cause your thyroid to produce more thyroxine and you will have poorer blood work results and also more symptoms. Hope this is helpful and sending you good thoughts today!

[WestBurrafirth in reply to Greekchick]

Yes stressed more than normal. But haven't done any mire exercise than usual... in fact probably a bit less. Thanks for your thoughts. Trying to feel more calm!

[Greekchick in reply to WestBurrafirth]

That’s good! Stress is the number one trigger for Graves and lifestyle change is essential for disease management. Wishing you well!

[ling]

When were you diagnosed?

What is your TRAb and/or TSI level?

[WestBurrafirth in reply to ling]

Not sure what these are. Have other blood test results. I was diagnosed as over active about 8months ago

[Valarian in reply to WestBurrafirth]

TRAb and TSI are tests for antibodies. You should have had one or the other of these tested to confirm whether you have Graves' (which is what they appear to have been treating you for) or something else.

[ling in reply to WestBurrafirth]

Graves antibodies levels.

As Valarian has explained, they confirm if you have Graves.

TRAb levels are an indication of disease activity.

Knowing your Graves antibodies levels, will help to tell if your condition is stabilising

[WestBurrafirth in reply to ling]

I'm going to ask my doctor and endocrinologist why these haven't been tested and request that they are. I've only had T3 ,T4, THS test results. I've had tests for serum thyroglobulin but it says n/a on the results.

I've had a full blood count test 2 months ago which mostly came back normal, although I think some of the levels were a little low.

And I've also had blood tests for liver function as the serum alkaline phosphatase level was 'abnormally' high -143 IU/L (30-130), but the last recent test showed it as normal. Sigh! Got to have another tomorrow.

Definitely going back to being GF and seeing if this helps. And I am taking supplements to encourage good gut bacteria, and drinking herbal teas to keep histamine at bay. I so want to get the carbimazole dose back down to 5mg.. and even stop having to take it!

Thanks for all your suggestions, information, encouragement.

[ling in reply to WestBurrafirth]

serum thyroglobulin - any idea what n/a means? Not applicable cos u don't have it? Or they do not do this test?

Btw, besides TED, hives and dizziness, do you have any other symptoms?

[WestBurrafirth in reply to ling]

n/a means not applicable, so I assume they didn't tested it. But I am going to check.

Other symptoms: feeling over heated sometimes; my brain feels a bit fuzzy at times; Have lost weight, I don't sleep particularly well - but that's been the case for the last 10 years. tiredness sometimes - having said that I am pretty active, so I don't give in!

[ling in reply to WestBurrafirth]

More important is to get TRAb tested to confirm the Graves.

serum thyroglobulin, I think that's for Hashimoto's. Though if you are testing for Hashis, TPO would be a more relevant test

[Greekchick in reply to ling]

Hi ling,

My endo says this is also used to test for thyroid cancer markers as well. Hope you’re well today. 🤗

[ling in reply to WestBurrafirth]

Regarding the various symptoms, they could be from Graves.

Re weight loss. You want to watch this one. It means the Graves is active. You want to dial back on physical activity till the condition is stabilised.

You might want to note, as you say "I am pretty active, so I don't give in!". This sounds pretty much like Graves. Cos when you're hyper, your energy levels are ok or even great, and that makes you think you are alright. Which is not the case as your blood test results attest.

And with weight loss, carrying on with the same level of physical activity, accelerates the weight loss. If continuous, people around you will soon also be able to see you are thinner.

[WestBurrafirth in reply to ling]

I've always been an active person so difficult to stop being one. I've lost about about 5lbs (2.27k). Physical activity can also help develop muscles so that can increase weight. Mostly I do yoga (good for being calm), and pilates, zumba when I can get to the classes, and the occasional swim. And then walking. But I'm also active in my studio - spend much of the day standing and walking about in front of canvases painting. Maybe I'll eat more!

This is such a good website . Reading about other people and getting and giving advice is wonderful!

Thank you

[ling in reply to WestBurrafirth]

Sorry, please do not misunderstand, I do not mean to preach at you.

When Graves is active, your metabolism does not function in the normal way.

Developing muscles will not happen till the disease is under control.

Eating more has no effect for weight gain. Food just seems to disappear down some hole. U can eat a ton and not put on any weight.

Instead, you could end up hurting your digestive system through the large amounts of food u are consuming, which shows up later as gastric or other types of digestive issues.

To have your carbimazole increased from 5 to 20mg, would indicate you are currently quite hyper.

Give your body a break to heal.

Help the carbimazole help you to get better.

I have been there with this weight loss thing in 2017. My energy levels were great and I didn't even realise I had lost a fair bit of weight till a colleague asked if I was alright.

When the attack is severe, and instead of taking a step back, u continue to push against the high hormone levels, the weight loss can progress rapidly and one could lose weight through the muscle down to the bone. It can be quite frightening.

[Valarian]

Fruitandnutcase is convinced going GF worked for her.

However, thryoid levels going up again can just be one of those things with an autoimmune disease like Graves'.

In over two years on carbimazole, I've never yet managed to get my carbimazole dose down to 5mg. (ok, maybe I should try the GF route...)

[SlowDragon Administrator in reply to Valarian]

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

[WestBurrafirth in reply to SlowDragon]

So when you went GF did it have a positive affect?

[SlowDragon Administrator in reply to WestBurrafirth]

Yes, astonishingly so. More on my profile

[WestBurrafirth in reply to SlowDragon]

Just read your profile - wow! You have certainly been through it! Compared to what you've had to deal with I feel I should be grateful for what I have. Thank you for putting it all up there.

Interested in the magnesium bit. May get the book.

[SlowDragon Administrator in reply to WestBurrafirth]

With Hashimoto’s and Graves, I just wish NHS medics would

A) always do blood test for coeliac

B) suggest trial of gluten free diet even if coeliac test is negative

C) test vitamin levels regularly

Hashimoto’s - about 88% benefit from gluten free diet

Not sure if it’s as high with Graves

[WestBurrafirth in reply to SlowDragon]

So just had a reply from my endo... he says:

'Thyroglobulin level is not normally done to monitor for Graves, rather, it’s a marker used for monitoring of treatment for thyroid cancer. This is not done for patient with Grave’s and perhaps why it was reported as NA as it has been rightfully rejected by the lab. Regarding TRAbs level, evidence thus far does not suggest monitoring this as it is not yet known how strongly does the level correlate to disease.

Regarding the change in thyroid hormones level. Graves’ disease has the tendency to fluctuate a little. The way it works can be rather random and hence the need to keep monitoring things even if it sounds relatively stable a few months’ ago. I don’t think this is related to you going gluten free. The link between coeliac and Graves’ is more related to (?) they are both autoimmune disease and we do know that having one autoimmune disease can increase the risk to other autoimmune disease due to genetic factors.

So comments? Clearly he is not accepting link between gluten and Graves disease. I think we have to do our own trials. In my experience there is little interest or knowledge in diet from doctors who don't have it as a significant part of their training.

[SlowDragon Administrator in reply to WestBurrafirth]

Indepth link about TG antibodies

healthline.com/health/antit...

Gluten intolerance and autoimmune thyroid diseases - both Hashimoto's and Graves

[SlowDragon Administrator]

Very important to regularly retest vitamin levels

What vitamin supplements do you currently take?

[WestBurrafirth in reply to SlowDragon]

Daily I take:

Vit D 25μg;

Selinium 10mg - 1 or 2 tabs;

Optibac and Acidophilus twice a day;

I have a tincture made up for my by a herbalist twice a day;

Glucosamine & chondroitin (have just run out of this and need to get more).

I was taking a mulitvit that included zinc but have run out of this as well.

Plus the Carbimazole!

Just had a full blood count test today and am awaiting results. Decided I need to email the Edocrinologist re TRAb levels

[SlowDragon Administrator in reply to WestBurrafirth]

Are you on strictly gluten free diet?

Recommended to get vitamin D, folate, B12 and ferritin regularly retested. Privately if endocrinologist doesn't do them all

[WestBurrafirth in reply to SlowDragon]

They seem to test some things quite regularly - monthly for T3 T4 THS; the test I had yesterday was a full blood count which I think will include these things you've mentioned. I was dong well on no gluten, then for the last month this has slid as I've been away. Now going back to strict gluten free diet. Thanks for your advice

[Valarian in reply to WestBurrafirth]

If you are hyper, they usually test for TSH, FT3 and FT4 every 4-6 weeks until your results are stable within range, and then perhaps every 8-12 weeks or so until it's clear that you are in remission (ie they stop your antithyroids and discharge you back to your GP).

It seems that antibodies (TSI or TRAb) are typically (but not always) measured on first diagnosis, and again before discontinuing carbimazole. I think you can get TRAb tested privately (not sure if it can be done via fingerprick test).

[WestBurrafirth in reply to Valarian]

I've written to my endo about this. Thanks

[helvella Administrator Thyroid UK in reply to WestBurrafirth]

Selinium 10mg - 1 or 2 tabs;

I very much hope this is a mistake! But just in case it isn't...

The usual daily selenium requirement is quoted around 70 to 80 micrograms a day.

A toxic dose is often quoted as 800 micrograms.

10 mg (milligrams) is 10,000 micrograms. 125 times our daily requirement. And about 12 times a toxic dose.

[WestBurrafirth]

Oops - sorry to alarm you - it should have read 200mcg which is 0.2mg. I've looked up the daily dose and it says 'Adults and children 14 and upwards - 400 micrograms/day' and on another website it says '200 mcg (micrograms) is the most frequently used dose in studies that obtained beneficial results'... and goes on to say that 200 -300 mcg is okay.

[helvella Administrator Thyroid UK in reply to WestBurrafirth]

I wouldn't take 400 micrograms a day. A few years ago, it was common to see 400 micrograms recommended and it was, probably, the most common tablet dosage. Since then, 200 microgram tablets have become more common, and 100 microgram tablets and, possibly directly aimed at the official daily dose, 83 microgram gels.

Long term, I'd keep the dose down.

Bear in mind that you will already be getting some selenium in your diet even if that is less than you need.