Is this Graves?

[Chi68]

Finally got my tsh receptor antibody test result today and it’s 6.9, range is <2.

Does this mean I have Graves?

[PurpleNails Administrator]

6.9 is above the <2 lab reference limit. Positive TRAb is viewed as evidence of Graves.

So yes you do have Graves.

Where your TSH, FT4 & FT3 retested to see if they have improved?

[Chi68 in reply to PurpleNails]

No, this result was from the original bloods that were taken but it’s taken 3 weeks to come back. I’ve been started on carbimazole and to get blood tested again after 6 weeks

The tpo antibodies were high so thought I had Hashimoto.

[PurpleNails Administrator in reply to Chi68]

What starting dose have you been given. Your FT4 was high but your FT3 wasn’t tested. You may not need a very high dose.

[Chi68 in reply to PurpleNails]

20mg daily

[PurpleNails Administrator in reply to Chi68]

That’s a lower starting dose. Your FT4 was high but not very high. 60mg is maximum. Higher levels often start at 40mg.

I started on 20mg, my FT4 was a only a little over range but my FT3 was nearly double. In 2 months my levels were approaching hypothyroid levels.

In 6 weeks you may be able to reduce the dose.

Carbimazole works by stopping production of new hormone. There’s no method to remove the excess. The surplus has to be used up by the body.

It totally safe to take as 1 daily dose & many do just that, but you can also consider splitting dose and taking 10mg 12 hourly.

Carbimazole works quickly, within hours. So splitting dose means better control and less of a time frame to allow hormones to begin producing again between doses.

Many doctors don’t really account for this as they look as the dose strengths which are produced and go by that.

[helvella Administrator Thyroid UK]

Together with your obviously hyperthyroid test results (posted previously) and symptoms, yes.

Have you been prescribed carbimazole or any other anti-thyroid medicine? Or just propranolol.

[Chi68 in reply to helvella]

Yes, prescribed carbimazole 20mg

[helvella Administrator Thyroid UK in reply to Chi68]

Hopefully you are splitting that dose?

Carbimazole stops your thyroid producing new thyroid hormone very quickly. But it can take weeks for the thyroid hormone already in your thyroid and blood to drop to an acceptable level.

Also, it has a short half-life. If you only take it once a day, it could let your thyroid "escape" and make some new thyroid hormone.

It is possible you will need a higher dose but that it unknown at this stage.

When that happens, you can suddenly become hypothyroid.

Please also read the Patient Information Leaflet, especially the warnings, start to finish - several times.

[Chi68 in reply to helvella]

No, haven’t been splitting the dose as it says to take 1 daily but I will half the tablets as it sounds it’s the best way to take it. There was no leaflet in the box of tablets. Was prescribed 56. The pharmacy gave me 20 tablets in a plain box and asked me to come back the next day for the remaining 36 which were also in a plain box. They are 2 different brands too.

[helvella Administrator Thyroid UK in reply to Chi68]

Pharmacies MUST supply Patient Information Leaflets if requested.

It is extremely important for medicines such as carbimazole which have strong warnings and demand that you read the PIL before you start taking this medicine!

From one of the PILs:

Read all of this leaflet carefully before you start taking this medicine because it contains

important information for you.

• Keep this leaflet. You may need to read it again.

• If you have any further questions, ask your doctor or pharmacist.

• This medicine has been prescribed for you only. Do not pass it on to others. It may harm

them, even if their signs of illness are the same as yours.

• If you get any side effects, talk to your doctor or pharmacist. This includes any possible

side effects not listed in this leaflet. See section 4.

Furthermore, they must be the PIL for the specific product dispensed. Not another make or another dosage.

It is completely unacceptable for a pharmacy to dispense carbimazole with such lack of care.

You can find online PILs for most (possibly all) makes available in the UK here:

medicines.org.uk/emc/search...

Your doctor might have helped you to split dose by prescribing 5 milligram tablets.

Please, in future, refuse to leave the counter without the right PIL for whatever you have been dispensed.

[Chi68 in reply to helvella]

I’ve just read the leaflet from the link, some scary sounding possible side effects!

I’ve not had to take any medicines before except for the contraceptive pill years ago and now the recently prescribed propranolol. I hadn’t been to my GP for 30 years until I went a few weeks ago. I didn’t know there should be a leaflet in with the tablets but I’ll make sure I get one in future. Thanks for your advice

[helvella Administrator Thyroid UK in reply to Chi68]

Many people do just fine on carbimazole.

But if you don't, it just could be serious.

I think you see why you should have got a PIL!

[PurpleNails Administrator in reply to Chi68]

Also make sure the expiry date is on the pills.

Im often given part of a Blister pack with date missing, or loose pills in bottle or jars which don’t have date. Sometimes My dose gets changed then my dose gets change back. So it’s best to know the date. And dispensing mistakes also occur.

I have a alternating dose of 5mg & 10mg so I often have different brands. But I prefer to stay on 1 brand at a time so split pills to take from which pack is out of date first.

[helvella Administrator Thyroid UK in reply to PurpleNails]

Also ask for the batch number to be written. How else to know what to do if there were a recall of certain batches? How would the MHRA know which was the defective batch if you reported an issue?

[tattybogle]

yes , high TRab (Thyroid stimulating hormone Receptor Antibodies) confirm the cause of your high fT4 /fT3 results is Graves disease. the antibodies are acting like TSH and stimulating your thyroid to produce more T4 /T3.

You might find this helpful reading thyroidpatients.ca/2020/04/... The spectrum of thyroid autoimmunity.

Some patients with Graves antibodies also have high TPOab (which i think you also have?) .

[Chi68 in reply to tattybogle]

Yes, they were over 1000

[SmallBlueThing in reply to tattybogle]

Haha, good to see "Poor Harold" (wearing a tie) on the thyroidpatients.ca page.

Talking about my eye problems with my GP I was told she couldn't request a TRab test. Do you think I was being fobbed-off? I've had several hyper-hypo swings since childhood, but only some caught by testing over the past 15 years.

[helvella Administrator Thyroid UK in reply to SmallBlueThing]

I'd certainly check your pathology laboratory handbook.

Somehow, things like "Call lab before ordering" can get converted into "Can't be requested by GP" between lab and patient.

[SmallBlueThing in reply to helvella]

Not sure I dare rock the boat

No test since August last year; never had an endocrinology referral.

[helvella Administrator Thyroid UK in reply to SmallBlueThing]

Looking doesn't, in itself, rock the boat.

[SmallBlueThing in reply to helvella]

Not sure if this is current, but it gives an idea of how GPs can cookie-cutter manage things:

endolri.org.uk/Referral/Hyp...

endolri.org.uk/referral/thy...