Graves disease: I was diagnosed over 7 years ago... - Thyroid UK

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Graves disease

Shrendab
Shrendab

I was diagnosed over 7 years ago been on and off Carbizamole feeling dreadfull aches pains anxiety back on antidepresents seeing encro on Monday bloods getting done Thursday my previous bloods were tsh 2.19 antibodies 46.3 that was back in jan 2018 so are on the rise again the only difference this time is no weight loss appreciate some feed back thanks

15 Replies
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Which antibodies did you have tested?

Shrendab
Shrendab in reply to greygoose

Peroxidase on think

greygoose
greygoose in reply to Shrendab

Thyroperoxydase - TPO antibodies? That's Hashi's, not Grave's. Do you have the range?

34 I think I'm having bloods done tomorrow TSH FT4 FT3 & TB11 AS REQUESTED BY ENCROLIGIST VERY CONFUSING

Valarian
Valarian in reply to Shrendab

TSH is a hormone produced by the pituitary gland to tell your thyroid to produce more thyroid hormone when levels are low. As mentioned previously, this will usually be low in patients with active Graves’, who typically already have high levels of thyroid hormone. TSH is a standard test for anyone with thyroid issues.

FT3 and FT4 are your free thyroid hormones - like TSH, a standard test for those who are hyperthyroid . When you get your test results, your result will be shown next to a “reference range”, often shown in brackets. This shows your endo (and you) whether your thyroid levels are above, below or within range. If your Graves’ has taken off again, you would expect FT3 and FT4 to be above range or possibly high within the range. If they are below range, it may be that you are over-medicated with Carbimazole, or possibly that you are no longer hyper, or even that you have a different autoimmune condition leading you to be hypothyroid. (Unfortunately, if you have had one autoimmune condition such as Graves’, you may be susceptible to others)

I don’t know much about TBII, but as I understand it, it is a TRAb assay, which will measure antibodies associated with Graves’ Disease.

If you ask for a copy of you results and the associated ranges, someone here will be able to help you interpret them if your endo hasn’t given you enough information.

Where are you Shrendab ? Just wondering, because TSI/TRAb are more common antibody tests in the U.K.

Shrendab
Shrendab in reply to Valarian

I’m in Tyne&wear I’ve not been on Carbizamole for a year last seen encro last August all In range even though I told him I didn’t feel right and was back on antidepressants had bloods done in January thyroid peroxidase was 46.3 tsh 2.19 I’m not sure if they did the right tests will put my results up when I get them but I’ve felt like this before and my thyroid had kicked off again I’m now 66 and this has got me worn down I’ve relapsed 4 times in 8 years the only thing this time I’ve not lost weight but lots of joint pain thanks for taking the time to reply it’s like a mind field x

Valarian
Valarian in reply to Shrendab

TSH and TPO alone won’t provide the whole story, but your next set of tests will be a good start.

Apart from lack of weight loss, are your symptoms this time the same as the last three times you relapsed ? Have you felt over-heated in the past, but perhaps now feel cold, have you previously suffered from tremors ? You mention depression - so sorry all this is getting you down - but does it feel the same as last time, or was it more an anxious feeling ?

Have they ever suggested RAI or surgery ? (Not necessarily saying you should take either of these options, just interested to know whether they’ve been suggesting them or not).

Take care!

Shrendab
Shrendab in reply to Valarian

Hi its hard to say feeling hot and cold feeling more anxious than I was a month ago very tired though not sleeping well I'm not racing around like I did in the beginning though feel at times I'm talking fast lost my confidence oh and my hair is brittle if that makes sense xx

Shrendab
Shrendab in reply to Valarian

No they've never mentioned any other treatment though not sure if I would if it's back again will discuss other options can't keep doing this x

Valarian
Valarian in reply to Shrendab

Maybe your thyroid levels will turn out to be normal (in which case, what else is making you feel so rotten ?)

I know some people here have had a bad experience with RAI, and you would almost certainly end up hypo. However, if your Graves’ won’t stay in remission , I can understand why you’d at least want to consider other options.

Shrendab
Shrendab in reply to Valarian

Not that I want it to be back but at least I know what it is making me feel like this and it will settle with meds I feel like I did at the beginning I think you forget how rotten it was before diagnosis x

We’d need to see the full results and ranges to be sure, but TSH with active Graves’ would normally be well below 1. TSH (thyroid stimulating hormone) is produced by the pituitary gland to tell the thyroid to produce more thyroid hormone when levels run low. If you have active Graves’ and a hyperactive thyroid, thyroid levels are likely to be high in/ over range, so TSH levels will normally be low to non-existent.

How much Carbimazole are you taking at the moment ?

Shrendab
Shrendab in reply to Valarian

I’m not on meds since last april

Valarian
Valarian in reply to Shrendab

So at least when you get your results, you know they won’t have been affected by medication.

I really feel for you, because although RAI wouldn’t be my first choice of treatment, coming out of remission so often must be awful. Let’s hope your results will be ok .

Have you had RAI just read about some awfull outcomes but any advice would be appreciated had bloods and antibodies TB11 done today also been reading up on hashimo wonders if I could now have that just want to be well again x

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