Been put on Carbimazole and I’m not sure I should be?

[Laylex1990]

I have a TSH level of 0.01 Free T4 level of 25 and a raised T3 level of 8.9

That’s what my results letter says and my Endo told me I have auto immune hyperthyroidism and I’ve been given 20mg of Carbimazole daily!

I don’t feel unwell, I haven’t struggled with weight loss but my menstrual cycle hasn’t been active for 6 months!

I have read about these tablets online and I just don’t feel they’re right for me?! I’m Hoping someone can maybe explain my levels better for me? I’d love some advice! I’m worried that im going to gate weight on these tablets when I don’t need the meds?

Thank you!

[helvella Administrator]

Those numbers might set our minds working but, without reference ranges it is a guess.

Do you have the ranges? (E.g. FT4 nnn (12 - 22) )?

Can you confirm that is a Free T3 result? (Not Total T3.)

And have you been tested for Thyroid Stimulating Immunoglobulin (TSI) or Thyroid Receptor Antibodies (TRab)?

[Laylex1990 in reply to helvella]

I don’t have the ranges I’m afraid. I’ve written exactly how my letter is written out.. it doesn’t say free T3 just free T4?

When I had my blood test they took 7 viles of blood from me but these are the results I’ve been sent ? I just don’t really feel comfortable with it all..

[helvella Administrator in reply to Laylex1990]

All too often we see this sloppiness. A number simply isn't a result without a reference range! (Not your fault, to be sure.)

Many pathology laboratories have information on their websites. Maybe check yours for ranges? Otherwise, contact your endo's secretary and ask for them. Just possibly, they could be visible to your GP, and even with patient online access.

Also, are you taking any other medicines? Or supplements?

[Laylex1990 in reply to helvella]

Okay thank you, I will try and find out more info from his secretary because I can’t seem to see anything online

Do the results he’s told me not tell us anything?

I’m meant to go back in 7 weeks it’s a long while to wait isn’t it when I’m not comfortable..

I originally went to the Endo due to a referral from my GP because I haven’t had a period in so long..

[helvella Administrator in reply to Laylex1990]

A common FT4 range is 12 to 22. But some start as low as 7; others go as high as at least 25.

A Total T3 range could be 0.9 - 2.7; a Free T3 test could be 3.1 to 7.7. Without knowing which, we can't really get a feel for whether the number you report, 8.9, is just over range, or more than three times top of range.

TSH ranges are fairly common, typically something like 0.4 - 4.2. So yours is obviously very low. But that is insufficient.

[Nanaedake in reply to Laylex1990]

You need to get a copy of your antibodies results. helvella is right, you need your antibodies testing to know what's going on and you need lab ranges. High TSI or TRAB antibodies signal hyperthyroidism and high TPO & TgAb antibodies signals hypothyroidism which can also cause fluctuations in thyroid hormone such that your TSH can become very low as in your case. Without knowing which antibodies you've got it's difficult to know which condition to treat. If you have Graves dieases (hyperthyroidism) it's unlikely your low TSH and high thyroid levels would resolve without treatment but with Hashimotos, an antibodies flare-up can often resolve within a few weeks and you would then become hypothyroid again. If it were me, I would want to know which condition I was dealing with.

[helvella Administrator in reply to Nanaedake]

I'd be very unhappy at a diagnosis of Graves/autoimmune hyperthyroidism without proof. Certainly, you can be diagnosed as hyperthyroid just on thyroid hormone levels, but you cannot, rather should not, assume an autoimmune cause.

[Laylex1990 in reply to helvella]

It definitely says TSH not TSI..

I’ve got the letter in my insurance file at work, I’ll take a copy of it tomorrow and post it here tomorrow morning so you can see.

I’m reading the levels off a text I sent to my mum

Thank you all for your help so far!

[helvella Administrator in reply to Laylex1990]

Sorry - I was asking Nanaedake - who has seen her mistake and corrected it! I'll remove my comment to avoid confusion.

[Nanaedake in reply to helvella]

Oh, thanks helvella , yes spotted it no sooner had I finished typing too fast to get to Yoga! Apologies for any confusion.

[Laylex1990 in reply to Nanaedake]

The letter says I have hyperthyroidism Graves’ disease but i don’t feel hyper or anything like that!

[Valarian in reply to Laylex1990]

If they haven't tested the antibodies, I don't see how they can be sure it's Graves'. You may not be far over the range (can't be sure until we see the ranges), which may account for your lack of symptoms, although lack of periods is a fairly common sign. The Carbimazole dose also supports the view that you are unlikely to be far over.

Have you got a follow-up appointment and good tests arranged ? Most of us on Carbimazole have tests every 4-6 weeks, even if we don't see the endo every time.

A lot of weight gain on carbimazole is people putting back on the weight they lost when they were first diagnosed as hyper. The problem is, being hyper increases the appetite. At first, this doesn't matter, because you are burning off the energy with a fast metabolism, but as your thyroid levels reduce, so does your metabolism, and if you don't also watch what you are eating, you put on weight.

[MrsGraves]

Absence of menstrual cycle can be an early symptom of hyperthyroidism. Assuming your diagnosis is indeed Graves then I would guess that your T4 and T3 levels are only marginally over range as you feel well and do not have any other hyper symptoms.

What I would say though is that without medication, your T3 and 4 levels may continue to rise and you will begin to feel increasingly unwell.

A diagnosis of Graves is never good news but on the bright (ish) side, you have the benefit of being medicated before you start to feel any of the awful symptoms this disease brings with it if left uncontrolled or unmedicated. 20mcg of carbimazole should bring your levels down fairly quickly and as these levels reduce so will your dose of carbimazole. The trick here is very regular blood tests - from memory I think mine were 4 weekly to make sure I wasn’t becoming over medicated ( experiencing hypo symptoms).

But yes as others have suggested, if you are in any doubt about your diagnosis - get on to your Endo’s Secretary pronto to have this confirmed.

I wish you well.