Any hope from your experience with Graves/TED a... - Thyroid UK

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Any hope from your experience with Graves/TED and weight gain?

Dovedale
Dovedale

I lost weight when first ill with Graves but this has stacked back on - presumably because Carbimazole slows down your metabolism and not helped by joint pain limiting exercise etc. I have also had TED for a few months and the possibility of IV steroids is looming which will increase my weight further. I am finding this all incredibly distressing and wondered if others could share any insights?

Very many thanks, Dovedale

12 Replies
oldestnewest

You need to put your blood results on here. TSH, T4, T3 and antibodies. Also any vitamin tests B12, Ferritin, Vitamins D and Folate because they are always low in people who have thyroid disease for example my Vitamin D level was 7 when I first became ill and so was my Ferritin. My stupid Consultant overdosed me on PTU and my TSH was 9 and felt extremely ill. I walked out of his clinic after he offered me counselling and I never returned and I stopped the PTU and then I slowly went into remission. I now monitor my own health because every Doctor I see knows nothing about thyroid disease. I have been suffering from Graves' for 12 years and I have a lot of knowledge about thyroid disease by joining support groups in the US and here in the UK.

Dovedale
Dovedale in reply to Lora7again

Thanks Lora7, I really appreciate your reply. I was particularly keen to hear how others had coped with the psychological impact and physically, how weight gain/loss panned out for them.

I don't have all the results you asked for but 18 months into treatment I am on 30mg Carbimazole per day with my latest results being TSH - non existent (range 0.4-4) FT3 8.4 (range 3.5-7.8) and FT4 27 (range 9-25).

Lora7again
Lora7again in reply to Dovedale

That dose needs to be increased ... here is a link

bnf.nice.org.uk/drug/carbim...

Dovedale
Dovedale in reply to Lora7again

Thank you for that link Lora7 - interesting. We have tried reducing my medication but my blood results always require an increase. 30mg feels very high to me. I have an appointment with the Endo on Tuesday - they cant go down the RAI route as I have TED. Surgery has been mentioned but never the block and replace option - maybe worth me mentioning? Thanks again. I am feeling increasingly isolated so it is fantastic to have this support.

I’ve put on two stone in two years with Graves but put in down to a long period of inactivity. (And the peri menopause)For the first six months I was that tired getting up from bed to sitting on the settee was exhausting! I aim to tackle my weight after the Christmas holidays & hopefully get off the 10mg of carbimazole I take daily.

Lora7again
Lora7again in reply to 437jd

I lay in bed for 2 years and gained a stone which I have now lost.

Dovedale
Dovedale in reply to Lora7again

I am sorry to hear you went through that.

Hi Dovedale,

I totally understand how stressful thyroid disease plus TED is. I think your weight issues will resolve when your thyroid is stable with correct medication and optimal vitamins. When you feel well again, you will be able to exercise more & feel better for this. Meanwhile don’t over do it - I stick to Pilates when I’m not able to do anything strenuous. Try to nourish your body with good food choices- cutting out gluten and limiting sugar have really helped me.

I phoned TEDct for advice recently & found them so helpful (they phoned me back with specialist details in my area & gave lots of support when I was feeling self conscious about swollen eyes).

Thinking of you,

Dovedale
Dovedale in reply to Buddy195

That is kind of you Buddy and good advice!

SlowDragon
SlowDragonAdministrator

Important to test vitamin D, folate, ferritin and B12

These are often too low

Gluten free diet helps thousands with Hashimoto's and Graves

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

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...

Dovedale
Dovedale in reply to SlowDragon

Thanks Dragon!

Yes, have moved onto gluten free bread, cereals etc but need to look at being stricter.

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