Should I reduce my carbimazole against my endo's suggestion?

[rammz]

Hi guys! This is the first time I post here but I have always been reading the amazing answers here, which has helped me a lot! I split this post into two; long post and a short post to the point!

Long post first! :-

I have been diagnosed with Hyperthyroidism (Grave's disease) on 16th March 2017. My GP told me that I should find an endo to look at my tests and decide on my medication. These were the results of the first test when I found out I was Hyper:

TSH 0.005 undetectable. (Range 0.27-4.2).

FT3 27.3 (Range 3.10-6.8)

FT4 64.9 (Range 12.00-22.00).

I also had low Vitamin D, which seems to be pretty common for hyper patients?

After a month and a half (May 5th 2017) I finally got the appointment with an endo that was recommended to me, and she decided to put me on 20mg carbimazole (10mg twice a day) and propranolol -beta blockers 20mg (10mg twice a day). I started feeling so much better after 2-3 weeks of taking these. My heart rate dropped from resting 115 to 75, significant reduction in hand tremors, heart palpitations, and have much more energy. My endo recommended no hard exercise until next appointment.

My next meeting and blood test results on June 20th 2017.

TSH <0.005 undetectable (Range 0.27 - 4.2)

FT3 0.368 (Range 0.182 - 0.462)

FT4 1.44 (Range 0.932 - 1.71)

TPO 77.06 (range 0-34)

As you can see my FT3 and FT4 are within the normal range. But my TSH is still undetectable, so the doctor kept me on the same meds with the same dosage. She also said that I can now freely exercise, which I did without any weight loss though, but at least I maintained my weight.

On July 26th 2017 my next appointment these were the results:

TSH 0.007 detectable (Range 0.27 - 4.20)

FT3 0.227 (Range 0.182-0.462)

FT4 0.934 (Range 0.932 - 1.71)

TPO 79.13 (Range 0-34)

My TSH has been detectable, and my FT3 and FT4 are still within range, but my FT4 seems like its about to hit hypo. My TPO increased a little (to be honest I am still not sure what is TPO and its role here).

My endo said that now I can drop my carbimazole to 15mg (10mg morning 5mg night) and my propranolol to 10mg( one in the morning).

I feel like 15mg is going to be too much. I am kinda feeling like im about to hit hypo, and I really don't want that especially since I finally feel great. The only downside is that I find it very hard to lose weight. I am the type that counts calories and I workout once a day for an 1.5hours (30min cardio, 1hr weight lifting). I have lost weight but it is very slow.

I have been considering dropping the carb to 10mg and maybe skipping on propranolol. I also made an appointment with another endo, just to have another opinion. But I would like to hear what you guys have to say. And how long will it take for the reduced carbimazole to take effect in my body?

I am sorry for the long post! I love you guys. Be strong!

Here is the shorter post! :-

These were the results of the first test when I found out I was Hyper:

March 16th 2017

TSH 0.005 undetectable. (Range 0.27-4.2).

FT3 27.3 (Range 3.10-6.8)

FT4 64.9 (Range 12.00-22.00).

No meds yet.

May 5th: Started carbimazole 20mg (10mg twice a day). Propranalol 20mg (10mg twice a day).

My next meeting and blood test results on June 20th 2017.

TSH <0.005 undetectable (Range 0.27 - 4.2)

FT3 0.368 (Range 0.182 - 0.462)

FT4 1.44 (Range 0.932 - 1.71)

TPO 77.06 (range 0-34)

Continued with the same dosage on meds. Started feeling a lot better here with very minor symptoms.

On July 26th 2017 my next appointment these were the results:

TSH 0.007 detectable (Range 0.27 - 4.20)

FT3 0.227 (Range 0.182-0.462)

FT4 0.934 (Range 0.932 - 1.71)

TPO 79.13 (Range 0-34)

My TSH has been detectable. Endo wants me to reduce my carbimazole to 15mg (10mg morning, 5mg night). Propranolol reduced to once in the morning (10mg).

I have been considering dropping the carb to 10mg and maybe skipping on propranolol. I also made an appointment with another endo, just to have another opinion. But I would like to hear what you guys have to say. And how long will it take for the reduced carbimazole to take effect in my body?

Thank you for reading! Be strong!

[helvella Administrator Thyroid UK]

When it comes to TSH, it is common in those who have been hyperthyroid with very low or suppressed TSH to find that it does not rise for months (or longer) after the cause has been removed. In my view, it would be wrong to base anything on continued low or suppressed TSH.

I'd rather not comment further as others who have experience will be better placed to respond.

[rammz in reply to helvella]

Thank you for the quick response! It is always good to hear people's view!

[Clutter]

Rammz,

I'd stick with 15mg for a while. If you reduce too quickly FT4 & FT3 will shoot up again.

[rammz in reply to Clutter]

why does thyroid have to be so complicated D:

[Qwerty12345]

I have graves although it's in remission and I'm no longer on treatment. I always followed the endos instructions. I went hypo around 4 weeks after starting treatment but it was picked up at the blood test and my dose was adjusted and results back in range at the next blood test. I felt very unwell prior to treatment and like you felt much better relatively quickly after starting treatment. Being hypo for a short time did not make me feel ill again. I was not aware of any hypo symptoms, maybe a bit more sleepy, but nothing unpleasant. I'm not sure what the reasoning for still being on propranolol is but I'm not a doctor. I was allowed to stop propranolol when I began to feel better. I had needed it for the 6 or so weeks between the gp appointment and the endo appointment when I began anti thyroid treatment. I stayed on it for a further 2 weeks maybe before realising I no longer needed it as I felt so much more relaxed and my heart rate was no longer racing away.

[Fruitandnutcase]

I'm in remission n too. My Graves was treated with block and replace, I took 40mcg carb for two months - I started on 20mcg but it didn't really make much difference. The 40mcg did and I ended up hypo by the time I had a blood test before seeing the endo.

I was never given beta blockers to stop my pounding heart because I am asthmatic. So on the grounds that some Graves sufferers can't take beta blockers, I imagine ( I have no medical qualifications) that you could get away without the beta blockers but that's only based on me getting better without ever having been given them.

I would never have interfered with my carbimazole, mainly because I would have been too scared to interfere with my treatment. My problem was that my blood was only checked after four weeks then I was allowed to go for another two months before I was checked again, two months was obviously too long to wait.

At that point I finally got to see my endo and was given levothyroxine and my body eventually went back to normal. I have to say I did dabble with my levo, at the beginning I needed an increase and my GP didn't want to interfere with my endo's prescribing and she gave me amitriptyline - some sort of thing that had been used as a tranquilliser in the past - it stopped my heart pounding but I didn't want to be on it so I stopped that asap. then my endo increased my levo. After that when I felt I need more levo I just put up a good argument with my GP and got it.

I was never tempted to alter my carbimazole but that was probably due to the nature of my treatment and the fact I'm a bit of a wimp and I was incredibly ill by the time my Graves was finally diagnosed. Besides, in my case the carb wasn't the part of the treatment that was being altered it was the levo, if I had been being treated by titration I may have reduced it myself, I don't know.

I'm not sure why you don't want to follow your endo's instructions or what effect you want the carb to have on your body, your results still look kind of 'Graves like' to me but again I'm not medically qualified.

Good luck with whatever choice you make.

[glo42]

Hello rammz,

All thyroid conditions are complicated but with the correct medication things can improve. I personally wouldn't change any medication without discussing this with the Endo Consultant. You are feeling a little better and your blood results are showing signs of this, I feel if you reduce or stop the tablets you will be back to square one........ is that what you really want????

Perhaps you could phone the Endo's secretary and pass on your concerns this way? Ask her to pass on your thoughts to the Consultant and phone you back with his recommendations.

Good luck..... sending you a (((hug))) right now.

[rammz in reply to glo42]

Thank you! I did get another appointment with a 2nd endo so i can hear what he has to say before i decide on what to do.

[Raventhorpe]

Hi Rammz I personally would just do the small dose decrease as endo suggests as if you try to decrease meds too quickly you will just end up seasawing between hyper and hypo. Your t4/t3 are a little on the low side now but endo has addressed that by decreasing your carbimazol abit. I would try this dose for a month and see how you feel before another decrease as if you decrease too quickly you could end up back to square one and you don't really want that to happen. Everything with the thyroid takes time and patience, don't worry about your weight for now just concentrate on getting a well as possible first then once you get to that point then you can concentrate on the weight issue. I was on and off carbimazole for 12yrs and it is a bit of a balancing act and I know it can be horrible when you put weight on, I put 4st in weight on after having RAi as I went hypo but have since lost most of that due to being optimally medicated and going on the 5/2 diet, but it's a long hard journey and I wish you well in yours.