Anther one who needs some advice and support!

[WestBurrafirth]

Hello everyone, I've had an overactive thyroid now for getting on for 3 years... an was diagnosed with Graves disease. My levels go up and down but in July this year were reading as though they were normalising:

T3 at 5.6 (normal range: 3.1 - 6.8), T4 was at 15 (normal range: 12-22). TSH was still abnormal at 0.09 (normal range being 0.30 - 5.00) but then the THS is always a long time to normalise

I had been taking a daily 30mg Carbimazole since the spring, so given the levels were looking good I unilaterally decided to cut this to 15mg (didn't tell my endocrinologist)

However it's now October and I've just had another blood test and am feeling fed up:

T3 at 7.2 and T4 at 20.8 and THS at 0.03

I am so fed up. It maybe that this 'spike' has been caused by being in places where I couldn't avoid eating gluten over the summer - I've stopped now again and hope that this will help bring the levels back down (my herbalist suggested that the spike could be caused by this)

I have an endocrinology appointment tomorrow and I know that the endo is going to start on about removing my thyroid which I do not want, and I've told him this several times!!! . I've tried to discuss diet with him but he doesn't want to know.

So ideas/thoughts/suggestions? Please. Best wishes to you all

[Lora7again]

Your results don't look too bad in my opinion because your T3 is only slightly over range. How do you feel? When I had my results about 6 months ago my TSH was 0.38 my T4 was 22.7 so over range and my T3 was within range. I did actually have a thyroid storm last July so I think I am improving. I have noticed when I am very stressed my levels go up and we are all going through a very stressful time at the moment. Recently I have thought my levels are going up because I have started to get symptoms of being over active and few weeks ago I did not sleep for a whole night which did concern me but things seem better now. Have you put those results on Elaine Moore's site and asked her advice? She has helped me a lot over the last 10 years and might be able to suggest something to help. I personally would not have my thyroid removed because I have seen how hard it is to get the correct treatment afterwards. Elaine Moore regrets having RAI and that is why she started her support site to help others.

Here is a link to her site

elaine-moore.com/

[WestBurrafirth in reply to Lora7again]

Thanks for this. Yes I have ben a bit stressed and not sleeping well some nights. I will try Elaine Moore. Thanks for the suggestion.

[greygoose]

I've tried to discuss diet with him but he doesn't want to know.

He doesn't know full stop. Doctors know nothing about nutrition. They don't learn about it in med school. A golden rule in life is to never, ever, take nutritional advice from a doctor.

I'm not sure that gluten could be responsible for your spike in levels. Going gluten-free can help a lot with symptoms if you're gluten-sensitive, but I really don't think it has any effect on the FT4/3, TSH or conversion, or anything like that.

[NIKEGIRL]

Hi. My thoughts were is the spike not due to cutting the carbimazole?

[WestBurrafirth in reply to NIKEGIRL]

maybe... I am now taking the 30mg dose again.. and will see what happens

[Valarian]

Your endo can’t force you to have RAI or surgery. If you refuse both and your thyroid levels remain high/unstable they will need to offer you carbimazole.

However, one of the things they will take into account when deciding whether to be supportive of long term anti thyroids, or continuing the treatment simply because you’ve refused consent to other options will be how likely they think you are to comply with your recommended medication.

That said, 30mg/day from July to October is a high dose to be taking without interim testing. Your July tests (apart from TSH) were within range, but were being supported at that point with quite a lot of anti thyroid medication.

[WestBurrafirth in reply to Valarian]

Yes I realise it's a high dose, especially as at one point I was only on 5mg. So it's gone up a fair way. I'm going to try everything to avoid surgery. Can't have the RAI as I have thyroid eye disease.