Overactive thyroid treatment - Graves Disease - Thyroid UK

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Overactive thyroid treatment - Graves Disease

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WestBurrafirth

Having been on Carbimazole for about a year, recently been taking 15mg, my T levels have fluctuated, although at times nearly gone back to normal. The last 2 tests (September and November) have shown my T3 rise from 7.6 to 9.4 (Normal range 3.1-6.8), my T4 rise from 20.7 to 24.7 9 (normal range 12 - 24) and my TSH has stayed at 0.02 (normal level 0.30-5.00). In May when I was taking 5mg they were nearly normal but them went up again.

My last conversation (yesterday) with the endocrinologist was worrying as he said I should now take 30mg Carbimazole to stop my thyroid functioning and then I will be given Thyroxine. He also mentioned removing the thyroid as the next option (I said I had no time to have operations!). I would like to know if others have had similar experiences and some advise on how to proceed.

I also have TED and the endo said it would help with this, but that my eyes wouldn't go back to normal - i.e not looking swollen - which I was pretty depressed about although he said there were things that could be done to help with this - I don't know what these 'things' are... any ideas? Thanks

12 Replies

Hi, I’m sorry that you haven’t got any replies to your post. This happened to me recently and I just reposted the next day & got lots of replies.

I’ve currently got Hashimotos, so can’t advise on medication for overactive thyroid.

However, I do have TED and can 100% sympathise with that. Are you taking 200xselenium daily?

Using good eye drops? Have you had your vitamins checked and do you supplement to get in top of the range?

Have you seen an ophthalmologist who specialises in TED? They will know more than your Endo about treatment options. I’ve seen a couple and feel reassured by all the tests/ measurements they do. Although I’m in an active phase of TED (almost 1 year now) I’ve not yet had steroid injections to reduce swelling. I currently take diuretics (furosemide) when my eyelids very swollen.

TEDUK have lots of information on their website on treatment options and a helpline. I sent for an information pack which has quite a lot of information.

Please do post again, as I’m sure others will advise on your medication!

Hi thanks for replying. Ive had TED for about 9 months. Yes I take selenium and use eye drops and take vitamins. I eat well (no processed food or packaged meals). I see an ophthalmologist who is reassuring. The idea of eye injections is totally scary. Hadn't thought of taking diuretics. one eye is more swollen than the other, although apparently I have it fairly mild . Nevertheless they are not how I want my eyes to be!! Will look at the website you suggest. Thanks for all this. Best wishes

Hi,

We definitely seem to be in same boat TED wise- I also have it mild according to ophthalmologists, but it doesn’t seem mild to me when I look in the mirror some days! I’m having a flare at the moment, with one eye quite swollen. It’s definitely affecting my confidence. I teach & my class think I’m sporting a rock star look wearing darker glasses indoors! I’m seeing my Endo tomorrow, so hoping for some further advice. I too try to stay as healthy as I can & am mindful of what I eat. I find lutein and zeazanthin (eye complex 7 from Amazon) has helped with dryness- this was advised by Ling on this forum who is very knowledgable about TED- do look up her posts.

You can PM me if you like-it helps to know others who are experiencing similar issues!

Thanks for the advice re lutein and zeazanthin. I'll look them up. Love the idea of you looking like a rock star! I keep my glasses on most of the time as this hides the puffiness.

Hi I have Graves’ disease and I had TED.

The TED was treated with the steroid infusion for 6 weeks and after the second week my eyes improved dramatically. This was a few years ago now.

My eyes are near normal now apart from suffering from dry eye but the eye drops see to that.

I found that the TED was the worst thing, it gave my self confidence a real bashing.

I’ve had graves now for 9 years . Was on block and replace but after stopping the drugs a couple of times my symptoms returned.

I now just take carbimazole a couple of times a week.

It’s a funny old disease but if you can manage it life doesn’t have to be any different than before diagnosis. Don’t forget that for all the horror stories you read on here, there are many good experiences that probably don’t make it on here.

All the best.

Thanks, good to hear about the eyes. I wear my glasses all the time as it hides the swelling - I hate seeing then swollen. I am going to ask about the steroid infusions, now you have mentioned them. How were these administered? I am not over affected by the Graves, but would prefer not to take these drugs all the time; just a couple of times a week wouldn't be so bad. But the idea of taking 30mg carbimazole and then having thyroxine on top seems crazy!. I do get a reaction from the carbimazole of Uticaria (hives) so take antihistamine every other day. Anyway thanks for responding, Good to know there is a positive response out there

Hi it’s the same as the steroid injections mentioned, when I first heard about it I was terrified.

I had to go every Tuesday morning and be hooked up to steroid pack and it’s administered into a vein in your arm.

It all depends on how your heart rate and blood pressure reacts as to how long the infusion takes.

The only side effects I had was not being able to sleep for 24 hours and a blinding headache but it’s worth it. You can’t tell by looking at me that I had such awful eyes. Good luck

Thanks for your reply. Still, the thought of having to take intravenous steroids is not good.

So one thing I am not sure of is whether, after the block and replace regime of daily high doses of Carbimazole, and then after the thyroid stops working taking Thyroxine, do you still have to continue on the high Carbimozole doses as well?

No I just take 5mg of carbimazole twice a week. Hoping to get right down to a low dose once a week .

Hi, I was diagnosed with GD in 2007. I was on the treatment your endo is suggesting, block and replace, until 2011 which worked well for me (after a few adjustment through the first year of treatment), as the disease went into remission for almost 8 years after they withdrew slowly all medication. I also had TED but mild and it only really flared up when my levels were off. Some puffiness in one eye in particular and dryness). I was very lucky that my endo was great on all front and very attentive. She referred me to the eye clinic too as TED needs to be monitored closely by a specialist. Maybe ask for such a referral if you can.

Regarding block and replace, i think your endo is right to recommend it as it can be a good way to bring your thyroid under control with less fluctuations (it's easier to adjust thyroxin dose than carbi) and therefore more chance to manage the TED and reduce flare ups.

If that doesn't work, I wouldn't be afraid of the op either. After I relapsed at the start of this year, i was put back on carbimazole but got agranulocytosis (very rare side effects and very undesirable!). This was unexpected as i had been on the drug for years before with no ill effect at all. So the next option for me was the op. I had a full thyroidectomy in March of this year and I have no regret at all as i have been feeling SO much better. I am lucky that levothyroxine works well on me. I know that having your thyroid removed is not a decision to take likely but i think it is better to have no thyroid than one that fails you and also has (or can have) a negative effect on the TED.

Also since the op, i don't have any eye symptoms at all. Touch wood it will stay like that. I think for me the fluctuations of the T3 /T4 and anti bodies were affecting my eyes most so since the thyroid has been removed and the GD is no longer active, everything has settled very well. The op is nothing major by the way. I took 2 weeks off work but was back on my feet less than a week later and was actually feeling back to normal after 1 week. If you go that route, make sure you pick an experienced surgeon. Happy to answer any other questions if I can help. Good luck!

Thanks for your response; it's very useful to hear all this. So one thing I am confused about is whether, having taken the high doses of Carbimazole to block the thyroid, and then going on the thyroxine, did you also have to continue taking Carbimazole? I have been seeing the TED eye specialist, who is great. I too mainly only have puffiness in one eye. I can't say as much for support from the endocrinologist who I never see and only speaks to me by phone. Thanks

Hello, yes i was on both carbimazole and thyroxine. It's called block and replace treatment. The carbi blocks your overactive gland completely (the idea being to give it a rest) but you also need the right level of thyroxine to replace what's no longer produced by your thyroid. Without that replacement you would unwell with hypothyroidism. In my case i was on the block replace regimen for just over 2 years (40 mcg carbi and 100 to 125 mcg levothyrox - the levo dosages had to be adjusted often at the beginning until i found the right balance). After 2 yrs, because my blood tests were stable by then, i was put on a low dose of carbimazole alone (5mg every day at first then 5mg 3 days a week because i was slight hypo), so no thyroxine at all because the idea is to get your thyroid to produce a the hormone again, hopefully at the right level this time. Then after that year, i stopped the carbi all together. I was warned that relapses were frequent but in my case, i was lucky to be in remission for 8 years.

I hope it helps. I'm sorry you have trouble seeing your endo face to face. For me it was the opposite. A very helpful and knowledgeable endo but not good support by the eye specialist.

For the eyes my endo recommended that i eat 2-3 Brazil nuts (good quality organic preferably) a day for selenium intake. She said it's better to get it from raw food than processed supplements.

If you have any other questions, don't hesitate.

Best wishes

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