SlowDragonAdministrator

As you are coeliac are you sure you definitely have Graves?

Has it been confirmed by TSI or TRab antibodies test?

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Could you have Hashimoto's instead/as well

I guess you had TPO and TG antibodies tested too?

Presumably now you have your vitamin levels optimal? If so you are able to use more thyroid hormones.

Perhaps you need some Levothyroxine as well ....or carbimazole reduced futher

Rmichelle in reply to SlowDragon

Thanks slowdragon, no my ferritin is dire still, it has hardly risen so I'm waiting for a appt at hospital to see GI and haem, I'm hoping that when I see gp next week he will do a iron infusion suitable for Celiac's, my b12 and folate are near tops.

I have hashis it been confirmed with my antibodies being greater than 900 for tpo, and 2 ultra sound scans have confirmed this. Now this is the question about my graves?- Endo says I definitely have graves but refuses to do tsi antibodies - his words, "everybody has graves who is hyper" I have asked several times for him to do the antibodies but he won't as he says " you do not need a test you have hashis and graves- he even puts it on my appt letters!!

I do not think he will add Levo as I've tried asking for that too, I think it will be just coming down further or coming off it, I do think that I would benefit from Levo being I have hashis!! 👍🌟

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SlowDragonAdministrator in reply to Rmichelle

Sounds like he backed himself into a corner on that one.

I would definitely test for Graves via Medichecks

I expect you just have Hashimoto's

I presented with as many hyper symptoms as hypo.....but was fortunate (I now realise) 25 years ago to have very good GP.

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Rmichelle in reply to SlowDragon

I agree, I think you are right I would have to do it privately for my own peace of mind.xx as always SD thankyou for your advice.x

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Valarian

Hi there !

I came across the NICE central knowledge system a few days ago, and they definitely recommend TRAb testing, so you could try asking your endo (you don't seem to have had much luck with these !) why he isn't following guidelines. I guess they aren't compulsory, but it would still be worth asking the question.

cks.nice.org.uk/hyperthyroi...

The BTF site, referred to in the NICE article (as is ThyroidUK), lists FOUR possible causes of hyperthyroidism:

btf-thyroid.org/information...

'- Graves’ disease - the most common cause

- A toxic multinodular goitre (a goitre is an enlarged thyroid gland)

- A solitary toxic thyroid adenoma (an adenoma is a clump of cells)

- Thyroiditis (inflammation of the thyroid gland) when it is temporary and self-limiting'

...so you could ask the endo to explain how he is sure you have Graves' and not one of the other three, especially considering that autoimmune thyroiditis (ie Hashi's, which you know you've got) has a temporary period of hyperthryoidism, followed by being hypo:

btf-thyroid.org/information...

Can't help with the pituitary. Presumably TSH was rock bottom when you were hyper, so it has made some recovery.

Stopping the carbimazole might help a bit, although you're on quite a low dose. If you haven't got Graves', stopping now that you are within range shouldn't matter, and even if you do have Graves', I think you've been euthyroid for quite a few months now ?

If that doesn't work, can't see them prescribing levo while you are still wthin range.

Rmichelle in reply to Valarian

Thanks valarian I will try again asking, I have nothing to loose, I just think carbi is suppressing my ft4 maybe and maybe if I came off it they would naturally raise hopefully, I too cannot see them giving me Levi even though I do show symptoms of hypo too, I'm on a missonto try and get my health sorted, I have a few gp appts coming up which will require referrals, iron def & ectopic beats. Lol preparing my list of questions for Endo now- he will be thrilled I'm sure.😡 are you well Valarian?

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Valarian in reply to Rmichelle

I'm actually beginning to feel 'normal' again for the first time in fifteen months, thanks ...so fingers crossed ! Of course, next month's tests may show something different.

Even a low dose must have some suppressive action, as otherwise it wouldn't work for people who stay on it long term (although I think they tend to be on 2.5mg-5mg/day),

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Rmichelle in reply to Valarian

Hey great!! So what are your last months bloods like, just interested to see where your levels are at to feel good.xx

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Valarian in reply to Rmichelle

FT4 was 16 (top of the range is 22)., can't remember the FT3, and am not at home at the moment so can't check. Regardless of the range, the endo said they wanted me to be consistently below 18, so 16 is good, except that I'm still on 20mg carbimazole, so they thought it would have dropped a bit more than that. TSH was still too low, which was beginning ot worry them.

I'm actually getting through WHOLE DAYS without flopping at the end of an afternoon

Hope they let you come off the carbi, and that it does the trick. I might be tempted to take myself off it anyway, but if it turns out you do have Graves' and then relapse, it wouldn't feel such a great idea !

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Rmichelle in reply to Valarian

Great, really happy for you V, no matter about other result but I do think mine is low at 12, Endo even said this himself that free4 was abit low that's when he said reduce again.

Yes I know what you mean but at some stage I will have to come off it anyway😕. X

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Rmichelle in reply to Valarian

Ooh thankyou for the Nice Guidelines.x

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helvellaAdministrator in reply to Rmichelle

Just for clarity, the Clinical Knowledge Summaries are NOT official NICE Guidelines. They are produced entirely separately and without the same status.

They could, nonetheless, be useful.

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Valarian in reply to helvella

Agreed - but still worth asking the endo why he is doing something different !

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helvellaAdministrator in reply to Valarian

I agree - just wanted to ensure that Rmichelle doesn't call them NICE Guidelines and, by so doing, undermine her argument.

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Rmichelle in reply to helvella

Thanks hevella for the info, I will question him, as really saying that "everyone who is hyper has graves " is not really good enough.xx

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helvellaAdministrator in reply to Rmichelle

It certainly isn't acceptable.

Have a look at this document for other causes of hyperthyrodism:

thyroidmanager.org/wp-conte...

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SlowDragonAdministrator in reply to Rmichelle

If you test privately yourself, you of course don't have to say you have tested, unless result is negative for Graves.

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Rmichelle in reply to SlowDragon

I think I need to do the private testing but first I will have a good damn go at asking Endo first.x

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SlowDragonAdministrator in reply to Rmichelle

You could hint you will test, if he won't

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Rmichelle in reply to SlowDragon

I will do a big hint SD.👍

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Valarian in reply to Rmichelle

Helvella's point is quite correct - just think they are a bit less easy to brush off than random academic articles, however well-researched.

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