How to take carbimazole

[Lisa254]

I have been on decreasing carbimazole for 8 months I’m now on 10mg I was fit and healthy up until 3 months ago where I was unwell either this illness and unable to go to work. I am starting to feel better but I currently take carbimazole first thing in the morning on an empty stomach with water and then leave it 30mins to half hour before I eat. Most days I feel fine when I wake up until just after I take the tablets I feel ill for about 4-5 hours after mainly with nausea or dizziness or generally unwell feeling and spaced out. Has anyone else experienced this? I’m thinking I might change to taking the tablets just before I go to bed. Any suggestions or advise would be greatly received 😊

[Nanaedake]

You've been on carbimazole for a long time for someone with Hashimotos. What do you think about it?

[Lisa254 in reply to Nanaedake]

I’m so confused by these results as my initial diagnosis is hyper then 5 months later my antibodies were tested the tsh receptor anti bodies (which I understand elevation shows graves) is 2.2 ref range 0.0-0.4.....then my tpo anti bodies is 45 ref range -34 And my tsh is 3.61. With these results I asked the endo if I could reduce my carb he said yes by 5mg 2 months later my tsh was 2.72 ft4 18 but no other tests done I asked again to reduce carb and he said no!! Today I have now booked a private appt with an actual thyroid specialist to get a second appt but it’s not for another 10 days.

[Nanaedake in reply to Lisa254]

Yes, I agree it looks confusing.

I don't know if these guidelines would help?

japanthyroid.jp/en/guidelin...

It mentions rare cases of TSH antibodies in painless thyroiditis. I wonder if it's possible to have Hashimotos and painless thyroiditis at the same time? Or can a person have Hashimotos and Graves disease at the same time? Was your FT3 and or FT4 elevated when you were diagnosed?

Maybe the private Endo can clarify the diagnosis.

[Silver_Fairy in reply to Nanaedake]

I have both Graves and Hashimoto antibodies.

[Lisa254]

Thanks for the information ....No my ft4 was in normal range 15 ref range 12-22 on diagnosis but no result for ft3

[Nanaedake in reply to Lisa254]

It seems very poor practice to test FT4 and not FT3 as it's an elevated FT3 levels that diagnoses hyperthyroidism. Are you sure Endo or GP didn't test FT3?

The Japanese Guidelines for diagnosing hyperthyroidism, along with other clinical symptoms says the following for diagnosing Graves,

'Elevation in serum free thyroxine (FT4) and/or free triiodothyronine (FT3) level'

japanthyroid.jp/en/guidelin...

In other words you have to have elevated FT4 together with elevated FT3. Or you have to have elevated FT3. So without an FT3 result the Endo can't either diagnose or rule out Graves disease it seems.

[Lisa254 in reply to Nanaedake]

I only have t3 and t4 results written down on diagnosis which were t3 17.8 And t4 39 I think this is different to ft3 ft4? I have to get all my results on Monday anyway so I’ll check

[Nanaedake in reply to Lisa254]

I think there is total T3 and total T4 which are different from the Frees, FT3 and FT4. It'll be good to get a copy of your results and find out.

[Rmichelle]

Hi there im on carbi still after 5 months and i have hashis but originallt diagnosed with hyperthyroid and also never got my antibodies tested till october, i was on 20mgs and the 15mgs, then 10mgs and recently on 5mgs where my tsh was well above range at hypo levels and frees were going lower, my endo wanted me to stay on carbi and at 5mgs!! I titrated my dose to three quarters of the tablet and are now starting 2.5mgs as my levels need to come down, my endo agreed to this in the end but wasnt happy i had sort of made the decision myself, makes sense though, dont blame you for going private and i hope it is a knowledgeable endoc, i have seen 2 endos now who are equally as useless as one another and have to say dont know their @rse from their elbows. Good luck.😊

[Lisa254 in reply to Rmichelle]

Hi rmichelle I think with endo’s they’re alittle like gp’s but in a smaller area, they specialise In too many areas my current endo specialises in diabetes! My last decrease was me just doing it as I was fed up of feeling so ill and then a few weeks later I started feeling more myself I’m not right though and it’s affecting my life. Atm I really struggle traveling in the car as it makes me feel dizzy and I get it sometimes walking although I have never had travel sickness in my life and I have travelled a lot.

How are you now feeling on 2.5 mg? Are you back to normal feeling yourself?

[Rmichelle in reply to Lisa254]

Havent started 2.5mgs yet as i have been to birmingham today with hubby and daughter and didnt want to mess around this week with dose as every dose change comes with feeling awful fir a couple of weeks with more palps and breathy.i am starting tomorrow, i know what you mean sometimes you have to trust your own judgement and not some stranger endo. I think its also my dire ferritin levels that are not helping me also. I couldnt take the docs tablets, sio i tried my own called blueiron liquid but that gave me a rash so got gp appointment next week to try and sort that.

I know i have overdone it today but have missed doing so much with my family already and been on what i calle a half human day but i feel very exhausted and dizzy now, it will take me around 2 days to recover-feet up tomorrow and watch films and cuppas.xx

[Lisa254 in reply to Rmichelle]

Hi rmichelle I hope you managed to enjoy your day out with your family 😊 I find if I feel ok when I wake up on the day I’m texting everyone to do things it’s such an annoying illness!! I hope u don’t feel too bad with reducing ur tablets I think I had a few nights sweets and then I started to feel better the last time I reduced it, let me know how you get on X

[Rmichelle]

Hi there again i feel out of whack breathy trembly etc overdone it big time on saturday and also not rested eniugh last week.ha. yes only day one on new dose so far so hasnt kicked in yet but it will very soon, 4th dose change now, would like a dose that is going to suit!! What dose are you on now 10mgs?

[Lisa254 in reply to Rmichelle]

Urgg it’s so annoying you would think our bodies would thank us for not putting so much medication in!!... Yes I’m on 10mg but am wondering if I’m tipping into under active as I have been quite depressed this last week for the first time, I need to get my bloods checked as I haven’t since end of Nov. Have you been diagnosed with graves or just hyper?

[Rmichelle in reply to Lisa254]

I was hyper but now hypo since early december and have hashis, my endo refused to test for graves however i dont think i do. You must get bloods done, i get mine done every month, every payday its my treat!!ha. Yes i noticed early december that my tsh was creeping up anf frees lowering and useless endo wanted me to stay on 5mgs-no way wasci going to let him dictate to me and make me even more hypo so cut it down myself by a quarter of tab-i thought once you hit hypo they would change meds but no such luck-stuck on carbi.

Yes just read your reply back-when you wake up in the morning and you feel ok you get on your phone and start texting people to do things-lol yes just like me, do you find you cant plan anything as you have to say to people i will see how i feel, its a pain in the @ss isnt it. I was determined on saturday to go as my hubby and 12 yr old daughter had planned to go and i thought sod it im coming, glad i did,do you find if you overdo things it takes 2 to 3 days to recover again?

[Lisa254]

I have been diagnosed with a very mild auto immune hyperthyroidism I think my antibodies for graves are just tipped out of range but I also have antibodies for Hashi too so I have a feeling I have moved to under active but yes I must treat myself and get my blood tested this week! Oh the joys of thyroid issues!

Yes I went for brunch and a walk the other day I was on the sofa for the rest of the afternoon and the next day!...To be honest I have only felt really ill for last 3 n abit months of my 8 month diagnosis and I haven’t really been anywhere full on as I haven’t felt like it but I am trying to stick to a phase return at work and struggle to do everyday so have gone to 2 half day weeks i feel such a wimp but I’m just waked by the afternoon!

I literally can not plan anything with friends as I always have to cancel I was ment to go to Spain for xmas with the family but I couldn’t go and they didn’t go either 🙄 I’ll have to make it up to them this year!!

I’m so glad u managed to get out with r family it’s worth it even if u have a couple of sofa days... this won’t last forever it’s just a blip in our lives (that needs to do one asap!!)