Graves Carbimazole Titration FT's

[cc251254]

What is the significance of FT3 increasing (within range) and FT4 remaining same (within range) over a period of 12 weeks and 2 blood tests - laymans terms please.

Thank you !

[Nashmanthu]

I was on carbimazole for twelve years.within a year my bloodtest came normal bt i was advise to take the tablets for rest of my life because i was not in normal range afterwards.its very dificult for me to sleep while on meds and fyls tired.after several years because of high heart rate i started taking beta blockers which made me gained a lots of weight and extreme tiredness bt it controls my heart rate and blood pressure.

[cc251254 in reply to Nashmanthu]

Thank you for your response.

[Lisa31SW]

I think that those results mean you might be at risk of developing a thyroid disorder has your GP or consultant not explained more details about what your levels are? Do you know what numbers your at currently? Lisa

[cc251254 in reply to Lisa31SW]

Hi Lisa,

thank you for your response. Yes, I have Graves Disease - diagnosed 2013.

[Lisa31SW in reply to cc251254]

I’m in the process of being diagnosed with possible Graves too. Is it easy is to control with Meds?

[cc251254 in reply to Lisa31SW]

Hi Lisa,

I think it would be fair to say that it depends on the severity, how long the the individual has had it, what meds are used and how well the individual responds to the meds and treatment. I was diagnosed 4 years ago and for me it's been a roller coaster of a ride and levels still haven't levelled out or I haven't found the levels at which I feel 'very good'. We are all different and some go into remission quickly after a short course of meds, others after a long course of meds and some never reach remission and stay on meds for life or choose RAI or surgery. I have chosen to remain on meds for the long haul.

Christine

[Clutter]

cc251254,

What are the FT4 and FT3 results and ranges? You could be undermedicated if either FT3 or FT4 rise high in range.

[cc251254]

Hi Clutter, here are the results of my last 3 blood tests:-

28th June - had been on 30 mgs weekly for 6 weeks (daily dose split)

TSH 3.64 (0.34 - 5.6)

FT4 13.8 (7.5 - 21.1)

FT3 4.6 (3.1 - 6.8)

27th July - had decreased over previous 4 weeks to 27.5 mgs weekly (daily dose split)

TSH 2.82

FT4 12.7

FT3 4.6

Sept 14th - had decreased over previous 7 weeks to 25 mgs weekly (daily dose split)

TSH 2.47

FT4 12.7

FT3 5.10

Thank you Clutter !

[Clutter in reply to cc251254]

cc251254,

FT3 is rising and TSH dropping because Carbimazole dose is being gradually reduced. I imagine endocrinologist wants TSH between 1-2 with FT3 <6.8.

[cc251254 in reply to Clutter]

I'm actually reducing without consent of Endo but the 5mgs daily she wants me to stay on long term gave results of TSH 3.64, FT4 13.8 and FT3 4.7.

I feel better now than I have for a long time but still room for improvement. I've read that it doesn't matter what the TSH is as it's the FT's that are the most important ?

I'm trying to get my TSH below 2 which is getting there slowly and FT's in upper third but don't understand why FT3 is going up but FT4 not moving ?

Christine

[Clutter in reply to cc251254]

cc251254,

I can't tell you why FT3 is rising but FT4 remains static. FT4 may rise when TSH is lower. As T3 is the active hormone and FT3 is good I wouldn't worry about the FT4 level.

[cc251254 in reply to Clutter]

Reducing Carbimazole by a further 2.5 mgs weekly for next 6 weeks shouldn't 'tip me over the edge' ?

[Clutter in reply to cc251254]

cc251254,

I really don't know. Can only suggest you try and see and if FT3 goes too high resume your current dose.

[cc251254 in reply to Clutter]

Thank you 😊

[XDog in reply to cc251254]

Did your Endo give you a reason for staying on 5mg even when you don't need it?

[cc251254 in reply to XDog]

Hi and thank you for your comments.

Yes, the reason the specialist wanted me to stay on 5 mg daily is because a) my levels were 'in range' (doesn't appear to matter where in range as long as in range regardless of any symptoms because the specialist is of the opinion if you're in range you shouldn't be having any symptoms and it is something other than thyroid causing them !!) and b) "5 mg daily dose is the minimum dose we provide for long-term treatment of thyrotoxicosis" - quoted from a letter she has sent my GP who has therefore now declined my requests for 6/8 weekly blood tests and doesn't approve of me continuing to titrate. The specialist has also stated in a letter that my next blood test is due in February 2018 !

I'm aware that I can buy blood tests from Blue Horizon etc but this poses more problems for me.

These GP's and specialists need to walk a mile in Graves patients shoes for a while, they would then become more understanding and sympathetic. It's been 4 years of what I can only describe as hell !

I am pleased to hear that you have 'normalised' and so quickly, long may it continue.

Best wishes

Christine

[XDog in reply to cc251254]

Looking at your test results, I'd say you have got room for manoeuvre, ie titrating your Carb downwards. But you would need to do further tests though - waiting till feb wouldn't really help much! As Clutter says, You can always take your dose back up if you see your results go to high, or if you start to see unwanted symptoms, and we know that we can have symptoms even when in range - no matter what the experts say.

I titrated my Carb down to zero, as I can see no possible reason for staying on it if my Ts are not too high. Looking at your numbers, I don't think you would be able to do that at this point, but stick with it, I hope you get there soon.

[XDog]

I've been in a similar position to you. I started on Carbimazole in January and my T levels dropped very quickly. My Dr kept me hypo for about 4 months before I decided to take over my treatment myself .My T3 was increasing slightly and my T4 was actually still decreasing as I titrated my Carbimazole dose down to zero. When I came off Carb my T3 & T4 settled at half to 2/3 range and I finally fell normal again.