Graves and TSH levels too high on Carbimazole - help!

[Coast40]

Hi, Quick question to all. I have been in Carbimazole since June since been diagnosed with Graves and overactive thyroid. They got my T4 levels down. Just had recent blood test as I am now on 5mg of carb a day and my TSH is 6.15 (above range - should be between 0.27-4,2) and T4 is 15.4 , my TSH 6 weeks ago was 5.46 so also above range and T4 was 12.9 on 10mg each day. What does it mean for the TSH to be high and how do they get it down?! Waiting for a call back from the doc.

Thanks all

[greygoose]

A high TSH means you're hypo, now. And, the only way to get it down would be to stop the carbi. Does your endo know your TSH is that high?

How were you diagnosed with Grave's? What tests did they do? Did they do the TRAB or TSI antibodies?

[Coast40 in reply to greygoose]

Hi Greygoose lovely to hear from you I am waiting for a call back from the Doc who will speak to my endo I had a antibodes test that confirmed it. All I can see its says 4U/L TSH receptor Antibody level. (shoolud be 0-2 u/l) . I feel ok. They said I need to be on Carbi until end of Dec 2019. Endo said get TSH down to 1.0 ideally! Perhaps they will give it me every other day?! - Endo did say this!

[greygoose in reply to Coast40]

OK, so that is TRAB. And it's positive. But, I think some endos get carried away - or negligent - and leave some people on carbi for much too long. Hopefully, they will reduce it to every other day.

[Coast40 in reply to greygoose]

Thanks. I have decided to ring direct to the endo Thanks so much x

[greygoose in reply to Coast40]

You're welcome.

[Valarian in reply to Coast40]

It’s not unusual to end up with thyroid levels in the hypo range with Graves’, as the disease itself may fluctuate up and down, particularly as carbimazole levels are reduced. Usually, they look at the graph of your results to decide what to do, but the Graves’ doesn’t always co-operate. How frequently have you been having tests ?

Usual theory is that you need to be on carbimazole for 12-18 months to stand the best chance of remission, so perhaps they will take you off it completely a bit sooner than next December. They could potentially reduce your dose to 2.5 mg,/day. At the moment, they will probably be more concerned to keep your thyroid levels under control than whether you are low in the range, but you shouldn’t be left below range for any length of time - that would be pretty uncomfortable for someone who had become used to being over range.

[Coast40 in reply to Valarian]

Thanks Valarian, that's helpful, does the high TSH level mean I am hypo even though my T4 is 15.4 ? (range is 12-22) I have been having tested every 6 weeks.

[Valarian in reply to Coast40]

You aren’t hypo, as your thyroid levels are within range - also, although your results appear to have been close to the bottom of the range in your previous test, this was almost certainly due to being over-medicated with Carbimazole. TSH appears to be doing its job, by giving the thyroid the ‘hurry up’ to produce more hormones, and get your thyroid levels back to where your body likes them to be. In the context of your Graves‘ disease, this all looks pretty positive.

If your thyroid levels are still rising on 5mg/day of carbimazole, your endo may keep you on the same dose for now. They might come up a bit more quickly if they reduced the Carbimazole, but keeping things under control is important - you don’t want a relapse !

The bit of the jigsaw that is obviously missing is FT3 - did they not test this ? FT3 recovery often lags behind FT4, so could still be relatively high in range. For people being treated for Graves’ they usually test TSH, FT3 and FT4 every time, at least until it’s clear that your thyroid levels are stable.

Six-weekly tests are usual at this stage. If at any point you begin to feel worse, you can always ask for the next test to be brought forward.

[Coast40 in reply to Valarian]

Thank you that's really helpful. I feel fine at the moment. I don't have my T3 level only from beginning of August and that was 5.2pmol/L . I will wait to hear from my Endo and hopefully fingers crossed things will level! It's so helpful to get information when you are waiting for the endo/doc to call....THANKS!

[Valarian in reply to Coast40]

You’re welcome. Graves’ takes off so quickly, it tends to be a bit of a shock.

[Coast40 in reply to Valarian]

Thanks, I know, a shock indeed!! x

[SlowDragon Administrator]

Ask GP to test vitamin D, folate, ferritin and B12

Low vitamins are very common with Graves and Hashimoto's

Also ask for both TPO and TG thyroid antibodies to be tested, if not been done

[Coast40 in reply to SlowDragon]

Thanks Slowdragon, I had full blood count in June and all levels were fine, but I will ask for them to be done on next test! I have an antibodies test - is there anything else I would need?

[SlowDragon Administrator in reply to Coast40]

You have had TSI antibodies tested

But have you had TPO and TG antibodies tested?

What are the actual results and ranges on vitamin tests. Often in rage is not optimal

Full blood count is only looking at iron levels