Graciebee ... seeking some further advice about cutting back on carbimazole.

Hi, guys just had an update and some further advice required.

I just had my blood tests results back... I definitely have graves disease.

I have been feeling more tired and a bit depressed for no reason recently and so thought my levels may be getting too low.

The results for my T3 and T4 were:

T4: 5.5 (range 2.6 - 5.7)

T3: 10.5 (range 9-19)

So obviously my T3 is getting low and I was wondering if this is what is giving me the symptoms?

I currently take 30mg of carbimazole but my GP advised me to cut back to 20mg... is this enough? I don't want my levels to keep falling! I have an endo appointment on 23rd October, so will be decided then whether to stop or not but my GP doesn't want me to stop yet.

Thanks

xx

Reply

[Marz]

How do you know it's Graves ?

[Hidden in reply to Marz]

antibodies, ultrasound scan, and radioactive tracer all indicate graves x

[Marz in reply to Hidden]

Do you know which anti-bodies were tested ?

[SlowDragon Administrator]

I think you have FT3 and FT4 wrongly labelled ?

FT3 is 5.5

FT4 is 10.5

Very important to test vitamin D, folate, ferritin and B12 too

Add results and ranges if you have them

[Valarian in reply to SlowDragon]

That would make more sense - FT3 typically remains high as FT4 comes down, and although it's within range, it's right at the top. My endo told me they actually set the target range for adjusting Carbimazole a couple of points below the reference range anyway, to leave some headroom for fluctuation.

[SlowDragon Administrator in reply to Valarian]

Are you on strictly gluten free diet?

Helps many with Graves

[Hidden in reply to SlowDragon]

Hello Dragon, yes apologies i wrote them the wrong way around!

[Valarian]

Unfortunately feeling tired goes with the territory, and it can be difficult to judge the state of your thyroid levels from this alone.

Reducing to 20mg seems a reasonable first step, as if you do have Graves', the last thing you want is for your thyroid levels to take off again. If you start feeling cold when others are not (the opposite from the typical hyper thing of opening all the windows and turning down the heating when everyone else is reaching for warm sweaters), then maybe ask for your blood test to be brougt forward a bit. I have a heart rate monitor on my watch, and although I'm sure it's not terribly accurate, I've found that the general trend of my resting heart rate gives a good clue as to my thyroid levels.

My endo told me that aftter being hyper for a while, coming back down to planet earth, and living life at normal speed can sometimes feel a bit flat at first. I certainly found this to be the case. I also found that after the first couple of months, I began to feel much better - some of the worst symptoms, eg the tremors, and the worst of the muscle problems, began to disappear, but because this meant I could do more things, it made me more conscious of the longer-term symptoms, eg tiredness, which I found frustrating.

[Hidden in reply to Valarian]

Hi Valarian, thank you for your advice it is very helpful. If I was on less than 20mg may that not be enough to keep the graves at bay? I don't want my graves to take off again, I am just conscious of not letting it get too low as it's so frustrating to be exhausted, especially as I have a physical job! I'm just worried about what happens from here... !

I do wear a heart rate monitor and my heart rate is starting to sit lower and lower below my 'normal' rate just a couple of bpm here and there so that would make sense. For me even when I was hyper I was totally exhausted, I'm just bored of being more tired than other people seemingly!!! Yes, I should be grateful I don't have the muscle fatigue like I did... and no other symptoms. I tend to just notice the tiredness and mood fluctuations really.

Thanks x