Need some advise regarding Carbimazole, Graves disease

[Garbbo]

Hello there. I’m new to this site. I’m 34 years old Lithuanian female living in London. 2016 March I came to know I have problems with my Thyroid. My T4 and T3 were normal, but TSH was just as little as 0.01. I was not prescribed any medications until 2017 November. It says Thyrotoxicosis likely Graves on my letter from the Endocrinologist. I’ve been put on 20mg carbimazole daily.

My blood results 31 Oct:

Free T4 28.4 (9.0- 23.0)

TSH 0.01 (0.30- 4.20)

Free T3 11.7 (2.5- 5.7)

My blood results 20 December :

Free T4 15.2 (9.0- 23.0)

TSH 0.01 (0.30- 4.20)

Free T3 4.2 (2.5- 5.7)

I have asked my GP for B12, Ferritin, vitamin D and it remains normal. My liver test was not great, but after taking Milk Thistle daily is improving fantastic.

So I asked my GP if I still have to stay on 20mg daily? And she replied I have to wait for my appointment with Endo which is in the end of February (2 more months to wait). I’m scared to be over medicated and end up being hypo!!!! Seems that she has no clue about this disease, but at least she’s doing all my blood test on my request.

So it’s been two months I’m on 20mg Carbimazole and seems that my T4 and T3 are back to normal, but not TSH sadly :/

SOS! I need some help from experienced people!! Any advice or recommendations will be much appreciated! I was thinking to start taking half of my 20mg Carbimazole daily... I asked to repeat my Thyroid blood test just because I felt better (not saying Im back to normal, I know it’s still long way to go, but at least I started to sleep at nights and my heart is not racing that badly anymore).

Thank you!

[greygoose]

Were your antibodies tested before your diagnosis? If not, I would ask her to test those, if I were you. Grave's antibodies are TSH or TRAB. It's my personal opinion that you should not have been put on carbimazole without having those tested, first. As you said, she doesn't seem to know a lot about thyroid.

It really doesn't matter about your TSH. It's the FT3 that is important, and yours is now down to mid-range. If she is keeping you on carbi until your TSH rises, then you could have a long wait.

[Garbbo in reply to greygoose]

Thanks for your reply! Yes, they were tested a while ago in hospital.

ANTI TSH 26.9A

[greygoose in reply to Garbbo]

Well, that's a relief! So often doctor just see a low TSH and assume that it's Grave's without testing. Your doctors appear to have done the right thing.

Even so, don't worry about the TSH. When you have Grave's, it may rise and it may not, but it doesn't mean much. It doesn't have to be in their rediculous range. It's the FT3 that is important.

[Garbbo in reply to greygoose]

do you think my dosage of 20mg carbimazole is not too high? Thanks for your time in advance

[greygoose in reply to Garbbo]

Given that your Frees have come down a lot, you could probably do with a reduction in dose. But, I'm certainly no expert!

[Garbbo in reply to greygoose]

That’s what I thought as well, but my appointment with endocrinologist is just in the end of Feb...and my Gp told she can’t help me with my dose :/ I have to wait for doctors opinion...

[greygoose in reply to Garbbo]

Oh well, there's a good side and a bad side to that. You don't want a GP that meddles, but...

[Hennerton in reply to Garbbo]

When I had Graves, my blood tests were done weekly by my GPs and they called the endocrinology department at my local hospital to ask for advice on my dose of Carbimazole. You are right to want an answer before the end of Feb and will probably be hypo by then.

Definitely ask your GP to seek advice and not leave you like this. Carbimazole is a powerful drug and not to be treated lightly as your GP is doing.

[Garbbo in reply to Hennerton]

Thanks for sharing your experience with me! I might change my GP, as I feel like I know more about Graves than she does and my health matters to me.

[Hennerton in reply to Garbbo]

When I was diagnosed in 2005 tnere was an NHS ruling that made it obligatory for a Graves patient to be referred to an endocrinologist within two weeks of disgnosis. Most GPs know very little about Graves. Definitely push your current or new GP for an urgent referral. Getting the dose right is difficult and can only be done by proper monitoring. Basically you are your own doctor nowadays on this one and must keep on top of it until the correct dose has been established.

[Lisa254 in reply to Garbbo]

Hi Garbbo I was similar to you ...I have been on carb for 7months and my thyroid results have been normal range for 6 months out of the 7 when I reduced my carb I went from 20 to 15 and now I have been on 10 for 5 months I just called the hospital and asked to speak to the endo dept and my endo called me back and told me not to decrease !!! but it maybe worth u calling the hospital as u still have a little wait until your next appt

[Valarian]

Hi Garbbo

I’ve got Graves’.

Your thyroid levels have come down pretty quickly on a medium dose of carbi - quite often for Graves’ cases, the endo needs to increase the dose to 40mg or more.

Assuming you do have Graves’, now that your thyroid levels are within range, there are two treatment options. For the first one , block and replace, they will maintain a high dose of carbi throughout treatment, but add in some levo to make sure you don’t go below range. For the second, titration, they will reduce your dose gradually, aiming to keep your thyroid levels within range. Both have similar outcomes , endos tend to prefer one or the other. As you’re already on quite a moderate dose, they may go for titration in your case .

To stand the best chance of remission, you will probably need to remain on carbi for twelve to eighteen months. Block and replace is at the shorter end of the timescale, but obviously, you’d be taking two drugs rather than one.

As Greygoose says, your TSH isn’t really that important at the moment, it will take a while to bounce back anyway. Your result is pretty usual if you are /have recently been hyper.

It’s unlikely you will end up truly hypo at the moment if you do have Graves’ - you will simply be overmedicated, and reducing the carbi will resolve the problem. Getting the dose right can be a bit hit and miss. If your next results are still on the way down, you could ask her to contact the endo to checkthe dosage.

[Garbbo in reply to Valarian]

Thank you for your help! Everything is very well explained.