Is there an optimal maintenance level for T4 when you are being treated for Graves with Carbimazole? My T3 is never measured.

I have been discussing my May blood tests with my Endo's secretary. My T4 has been hovering between 13 and 14 for the past couple of months, which I feel might be a bit on the low side. I feel generally well except for leg fatigue (particularly my calf muscles) and a bit of backache. I'm having my June bloods done at the end of the week, and have booked in to see the Endo next week. Should I be discussing a reduction in my Carbimazole (I'm only on 5mg at the moment). Interestingly, my T4 has dropped since I started on regular B12 jabs at the beginning of May, i.e. my thyroid is probably functioning better on its own now I'm getting enough B12, hence the Carbimazole is more potent?

[greenginger]

Hi I am on 5mg carbimazole and know that if you are classed as within range they do not do T3.

My T4 always hovers around 12 and that is too low but I cannot get it to improve even though my TSH has risen.

Do keep me informed how you get on.

[Hidden in reply to greenginger]

Sorry, I have replied below, but so dopey forgot to press the reply to this button!

[Hidden]

Thanks for replying greenginger. Not feeling so great today, pretty tired and headachy, fed up with it all actually. I'll be interested to see what this weeks bloods are like, maybe I have dropped again. I think I'll see if the Endo will measure T3 next time, I go privately so I can't see any reason for him to object. Might see if he'll reduce me to 2.5mg, or just stop altogether for a while. Want to just feel normal again.

[greenginger in reply to Hidden]

Do not stop or you will become really ill. Do get your T3 done but what is your TSH level?

How long have you been on carbimazole and how long have you been diagnosed?

[Hidden in reply to greenginger]

Sorry, I've done it again! Pushed the wrong button...

[Hidden]

I was diagnosed last July 2012 in a routine medical, never really had any bad symptoms had no idea I was ill. Would have thought I was hypo if anything as I had put on at least a stone and was really tired. T4 was 37 and TSH 0.01, TPOab 524.8. Assumed Graves because of the antibodies, and had an uptake scan which confirmed this. Started 15mg carbi in August 2012. Bloods have gone like this:

Oct/12 T4 16, TSH suppressed (carbi reduced to 10mg)

Nov/12 T4 23.3, TSH suppressed

Jan/13 T4 16, TSH suppressed

Feb/13 T4 9, TSH 0.24

* Was really hypo here, a basket case. Lots of symptoms. Endo wrote me to reduce my dose to 5mg but I didn't receive the letter for 10 days so stayed overmedicated for a bit. Went to see him and we decided to try stopping for 2 weeks to allow my T4 to recover, then recommence on 5mg.

Mar/13 T4 15.8, TSH 0.79 (no carbi)

* Had these bloods done at the hospital as went to A&E so ill. Had been off the carbi for 1 week. Went back on 5mg after this episode. It was at this time that I started pushing for B12/folate deficiency diagnosis. Long story but had been treated for this in 2006 but never offered maintenance jabs. My B12 was low normal (around 300) and my folate had dropped off the bottom of the range. All my symptoms pointed to this.

April/13 T4 13.6, TSH 0.74 (5mg carbi)

*My Endo arranged the MMA test for me which showed I was B12 deficient at tissue level. Thyroid results remained "normal".

May/13

*Started B12 jabs and folate, which profoundly improved how I've been feeling. Have at times felt almost normal.

May/13 T4 13 something, TSH can't remember

* Just asked for these over the phone yesterday, but didn't write them down, so of course can't quite remember. I'm having my June bloods on Friday and I'm sort of expecting the T4 to have dropped given that the way I feel has dipped a bit. The Endo did say in a previous letter that if I went hypo on 5mg then he would recommend stopping meds, but honestly I don't know why I should be made to go hypo for this decision! My TSH has been in the normal range since March. Anyway I'm seeing him next week.

Sorry for the long essay, it's actually done me good to see it all written down in one place!

H x

[greenginger in reply to Hidden]

It is good to see it all written down. I would say that 12 months is too short a time to come off it altogether but I think 2.5mg seems sensible.

I think you have had better treatment than me. In 2 years I have had to wait months between appointments and had no uptake scan and still waiting for my antibodies test! My B12 and iron levels always low but nothing done for them.

seems I ill have to get my pushy head on and start demanding better treatment.

Thanks for your info it has made me think what I need to demand. Hope you get your reduction and improve. Keep me posted.

[Hidden in reply to greenginger]

Sad to say the only reason I have so much feedback and contact with my Endo is because I see him privately. And actually, I only really "woke up" to the fact that I was ill, and really needed to pay attention to it, when I went hypo. Since then I've been a pain in the butt! I am particularly obsessed with B12 (most of my posts are about this) but I can't help it. B12 deficiency is depressingly all over this forum, everyone is low "normal" unless they're self supplementing.

I would definitely recommend getting pushy but staying polite and civil. I have found my Endo really interested in my case and keen to see if the B12 would help, he's going to be getting a lot of feedback and a handful of articles when I see him next week. I strongly believe that thyroid patients need their nutritional deficiencies corrected at the start of treatment to get the best out of their medication. And that means being in the top half of the range at least, not low normal. Wish I'd figured this out sooner.

If you need any links about B12 or folate let me know, what are your levels now, do you supplement? I still need to ask for ferritin and vit D tests as I don't know where I am with these.

H x

[greenginger in reply to Hidden]

Hi I have supplemented with sublingual B12 in the past and it made no difference long term. Also taken iron tablets and vitamin D and ditto.

I have just had full blood tests done last Wednesday and I am awaiting the results. I will no doubt still be anaemic, still low in vitamin D and the GP and endo will do nothing.

I have been polite ( too polite ) with NHS endos and to no gain. If this continues much longer I may well go private. I wish I had at the start ( 2 years ago).

I also eat well/healthy and always have.

I also put on weight whilst hyper and people always gasp with horror but it is very common.