Carbimazole - recent results

[Ex111]

I missed my most recent endo appointment as the hospital had a new system with my old phone number . However , dr has adviced by letter to stay on alternating 5mg/10mg doses carbimazole .

Bloods 9/8

TSH 2.0 ( 0.27 to 4.2)

FT4 12,3 ( 10 to 20)

FT3 not tested

Have been on carb for over 18 months now . Next bloods November . Dr has requested FT3 in my next blood form . First time since diagnosis . TSI ab tested at diagnosis was 40 (0-2) .

Just wondering any thoughts on my results? I’m really hoping to reduce my dose soon . I actually feel fine , apart from bloating .

TSH has moved up since last bloods but FT4 remained the same .

Thankyou

[PurpleNails Administrator]

If you feel fine that’s what most important.

How much carbimazole are you taking?

You could reduce a fraction to see how much it rises on an adjusted dose (6 weeks).

Your FT4 is low in range so I don’t think a reduction will risk it rising too much.

[Ex111 in reply to PurpleNails]

I’m on alternating days of 5/10 mg It’s odd I feel fine . Although maybe I’m just used to feeling awful !!

I might try reducing my dose a little then .

Thanks for the reply .

[PurpleNails Administrator in reply to Ex111]

Discuss with doctor. Going down to 5mg per day - would equate to a reduction of of 20mg or 15mg per week depending on which week.

Or you could still take 10mg 2 days per week to the over all reduction is very slight.

You don’t know what your FT3 is like & that might be disproportionately high. I think you would have hypo symptoms if it was low too.

[Ex111 in reply to PurpleNails]

Hmmm . Yes I probably should contact the endo to ask if I can reduce the dose first . it’s such a shame I missed my appointment. I was super annoyed at the hospital

[PurpleNails Administrator in reply to Ex111]

Yes that must have been annoying.

I did most of my appointments by telephone, so it’s entirely possible & much easier & convenient for all.

We really ought to confirm with doctor, If only to make sure we have the right quantity of medication & they are prepared for potential changes (but I do get why you want to leave doctors out of it)

I admit I did tweak dose myself once - when the doctor insisted I increase dose (because TSH was too low). I pointed out the FT4 & FT3 were very low - but he was focused on TSH & my diabetes (which I hadn’t actually been told about).

So at that occasion - I stayed the same on same dose, knowing it would likely continue to reduce frees.

I was right & fortunately I had a retest on time and the sensible nurse specialist followed up & said your FT3 too low, & altered the dose. She knew the TSH took ages to respond (still waiting - mines now been totally suppressed for about 7 years)

Then covid happened & the endo wrote to me saying as I was “more or less stable” (exact words) I can leave TFT checks for 10 weeks. So it was only luck I was on the right dose at that stage.

Sp you do have to stay on it. I’m also on a 10 / 5mg dose. The GP Monitors me but the specialist guidance was for my FT4 to be around “15” (Mid range) & no they didn’t actually add a range.

Recently my frees have risen from 40% up to 80% & I’m now having mild symptoms.

Because it’s in range the GP marked ok. They missed that the level was too high & the difference in range making it even higher. They just said the rise was “little”.

I had them agree an increase because I know of it goes over-range they’ll want to to go back to see consultant & I’d rather not.

So doctor altered the prescription - but then didn’t add additional pills. Even the GP the asks me when I plan to have RAI. So they can read that part of the notes!

[Ex111 in reply to PurpleNails]

I really don’t want to have my thyroid out or RAI , I have the eye disease . Am hoping I can stay on meds for a lot longer .

I guess I need to trust the endo . At what point did they let your GP take over your treatment?

[PurpleNails Administrator in reply to Ex111]

After 2 years the specialist suggested I be referred back to GP for monitoring and can be referred back once ready for treatment.

She said something along the line of that she would only - keep me on her books if I was going to have treatment soon.

I refused at first and said - no I’m staying - but at the next telephone appointment I agreed, as I figured if would be easier. Firstly the result would appear online instead of having to wait & chasing up letters, appointments & results. Secondly I was hopeful I wouldn’t have to explain why I wasn’t having treatment soon.

I did have to contact practice when I was due for test but that was arranged without hassle. Otherwise I didn’t hear from them. The results were just marked satisfactory.

I have a nodule so likely to be more stable than how Graves can often be, but my neighbour who was diagnosed with Graves & TED was discharge on 5mg daily dose after she kept avoiding contact (she didn’t want RAI). The practice hasn’t contacted her to arrange blood tests. I tell her to chase it up & actually check her results but she hasn’t for well over a year now.

[Ex111 in reply to PurpleNails]

I guess I’ll wait and see. Am hopeful I can reach remission . I’ve had a good experience with the hospital , apart from this recent mess up .

Thanks for sharing your experience it’s very helpful .

[SlowDragon Administrator]

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

[Ex111 in reply to SlowDragon]

Thanks for your reply . I haven’t tested vitamins for ages and haven’t taken any vitamins / supplements for 3 months - although I have a drawer full !

I probably should do a test .

[Valarian]

If you’re feeling fine, I wouldn’t mess with the dose, especially without an FT3 result. TSH appears to be working.,

Some people will feel better when their thyroid levels are slightly below mid-range. The problem is, few people have their thyroid levels tested until they are ill (and have probably been ill for some time), so most of us dont know where our optimum levels lie.

If you start to feel very tired , or cold when everyone else is warm, i would ask for your next test to be brought forwards. If you do decide to alter your dose of carbimazole yourself, it would be best to tell the doctor, otherwise they won’t be able to make proper sense of your next set of results.

[Ex111 in reply to Valarian]

Thankyou. Yes I’m pleased my TSH has started to shift .

[asiatic]

I am on Block and Replace and do tweak the dose myself. After 6 years I am confident enough to do this guided by my symptoms but always follow up with a blood test at my GP's. So far he has been happy with the results.The fact you are now producing TSH suggests you are likely heading for remission. Pity you have no fT3 to see the full picture. I know with that TSH result I would want to experiment with lowering my Carb to 5mg. and follow up with a full TBT.

I would be on the lookout for any hypo/hyper symptoms developing. I use resting pulse rate - normally in 60's, reduces to 50's if hypo and starts climbing up and up if going hyper.

[Ex111 in reply to asiatic]

Thankyou . I don’t feel hypo at the mo . My heart rate is normal and I’m not constipated - which was the case when I was hypo . I’ll look out for symptoms and ask for an earlier blood test if need be .

The endo secretaries have been very helpful so far .

[jiankang]

I have hyper/Graves. I had one endocrinologist say the 5 mg a day carbimazole I was taking was very low, just continue. My functional GP suggested reducing which I did to 2.5 mg a day. I then went to check with another endocrinologist who said I could stop my carbimazole all together. Have stopped now since March and the latter endocrinologist says my thyroid readings are still fine. I’m not feeling any better though. Always tired and brain fogged. Trying to check other causes for my fatigue and brain fog. I live in Malaysia and it’s very easy for us to consult with endocrinologists privately. I’ve been to three different ones.

[pennyannie in reply to jiankang]

In some instances Graves can burn itself out - but we have no information on your journey so it's difficult to say much more :

elaine-moore.com

[pennyannie in reply to pennyannie]

Once triggered you will be more prone to it happening again -

Check out Graves triggers, life styles, alternative, holistic, and complementary medicine sections / articles on Elaine's website :