Hello,
I have Graves' disease and I'm on block and replace treatment. I have not started thyroxin yet I'm seeing my consultant next week, if my bloods are ok I will start it. I want to loose weight. Has anyone tried taking less carbimazole to help with this. I'm on 40mg a day and thought I could take it every other day!
Thanks
Your doctors should have explained things to you much better than they have. I am no expert on Graves. Others, likely with personal experience, will probably come along and add comments.
No. Don't do that.
Carbimazole lasts a fairly short time within the body. (Which is why people are often told to divide their daily dose into two or three).
If you took 40 on alternate days your thyroid hormone levels could very easily do a roller coaster and make you feel very unwell.
If you under-dose on carbimazole there are several things that could happen. First, the doctors may not see the changes they are expecting and will be unwilling to commence the replacement part of block-and-replace. Second, the thyroid hormones levels rise even further than they already have. Third, many Graves sufferers report that they have very powerful urges to eat so you might find it even more difficult to lose any weight.
My suggestion is that other than ordinary moderation of what you eat (i.e. not a full-blown calorie restricted diet - just avoiding the worst and the most), now is probably not the time to attempt to start losing weight.
The Patient Information Leaflet for Carbimazole says:
The tablets you take each day may be split into
two (morning and evening) or three (morning,
afternoon and night). Ask your pharmacist if you
are not sure.
medicines.org.uk/emc/medici...
The Summary of Product Characteristics says:
Adult:
The initial dose is in the range 20mg to 60mg, taken as two to three divided doses. The dose should be titrated against thyroid function until the patient is euthyroid in order to reduce the risk of over-treatment and resultant hypothyroidism.
Subsequent therapy may then be administered in one of two ways.
Maintenance regimen: Final dosage is usually in the range 5mg to 15mg per day, which may be taken as a single daily dose. Therapy should be continued for at least six months and up to eighteen months. Serial thyroid function monitoring is recommended, together with appropriate dosage modification in order to maintain a euthyroid state.
Blocking-replacement regimen: dosage is maintained at the initial level, i.e. 20mg to 60mg per day, and supplemental L-thyroxine, 50mcg to 150mcg per day, is administered concomitantly, in order to prevent hypothyroidism. Therapy should be continued for at least six months and up to eighteen months. Where a single dosage of less than 20mg is recommended, it is intended that carbimazole 5mg tablets should be taken.
medicines.org.uk/emc/medici...
Rod
No, do not mess with the carbimazole, you are taking risks with your wellbeing, because hyperthyroidism is a serious matter. I know because I have Graves' and I went into Thyroid Storm and nearly died.
The Levo, once you start it, will help you to lose the weight you have gained on the Carb, and if they get the balance right, hopefully you will be able to recover your health.
Thanks Rod, marram, I didn't think it was that serious, I feel much better now. I will carry on as I have been prescribed. My consultant told me to take it in the morning, shall I split the dose then?
Thank you
Have just stopped taking carbimazole but I took mine 40mcg in the morning and I was always asked if I took it all at once or split it and everyone nodded and seemed pleased when I said I took it all in one go.
I definitely wouldn't mess with Carbimazole when you are on block and replace, you are taking it to kill off your thyroid function. As Louise says once you start on levo that is the one that gets fine tuned. Speak to your consultant next week and see what they say about weight gain.
Hyper1967,
I agree with LizH - what I posted was meant to be supporting information - not advice to change.
Do, by all means, discuss with your medics the possibility of split dosing if you wish, but don't take my words as "advice". I do not have the knowledge or experience to go further than pointing some things out.
Rod
What is levo?
Levo = Levothyroxine - T4 once your thyroid has been zapped with Carbimazole and no longer produces natural thyroxine you are given man made levothyroxine to replace it and in my case I started on 50mcg daily and after regular blood tests had it increased to 75/100mcg as time went on.
there is also another way.... I did this with GP reluctantly accepting and endo feeling OK....you can reduce carb very slowly but only according to monthly blood tests.. .I went from 40mg daily to 2.5mg.... also focused on gut health - no caffeine, no wheat at all, cut down on alcohol (best if you can give up!) take supplements, have acupuncture and massage, be very careful of diet......I am very aware of body and if I get symptoms (rushing to loo, eating like no tomorrow and stressy thoughts) would take action.....
I agree with tilly83, I am on carbi only, never block and replace. You just have to match the dose of carbi to your blood test results, taking care to not go hypo along the way (although it does still happen). Monthly blood tests are advisable. Eventually you stabilise on a dose of 5mg or 2.5mg, and continue with that until the Endo feels you can come off it. I started on 15mg and I'm now stable on 5mg.
For me, and this is just my opinion based on personal experience, it means that my thyroid is still doing the work it's meant to be doing, it's just being dampened down a bit. Why shut it down completely and rely on thyroxine, rather than your own natural hormone that your thyroid is still producing?
Hampster
I just wanted to add in this published research article about hyperthyroidism treatment options:
ncbi.nlm.nih.gov/pmc/articl...
"The starting dose of [Carbi] is usually between 20 to 40 mg/day depending on the severity of the hyperthyroidism. PTU is started at between 100 to 150 mg 3 times a day with 100 mg of PTU considered equal to about 10 mg of [Carbi]. The initial high dose of the drugs can be tapered down after 4 to 8 weeks in what is referred to as the titration regimen. A maintenance dose of 5 to 20 mg of [Carbi] is achieved by about 4 to 6 months and this is continued for 12 to 18 months."
"The block–replace regimen refers to the option of maintaining the high dose of antithyroid drugs while adding levothyroxine to maintain euthyroidism. This has the advantage of fewer thyroid function tests (TFTs) but there is some evidence of a higher frequency of side effects. About 12 trials14–25 (Table 1) have examined these regimens. The relapse rates are similar at over 55% but the withdrawal due to side effects (16% versus 9%) and complication rates including rashes and agranulocytosis were higher in the block–replace regimen.26 One trial that used [Carbi] 100 mg daily led to 7 out of 17 (46%) withdrawing from the high dose arm due to side effects and 2 cases (12%) had agranulocytosis, a potentially fatal complication.17"
"Our practice is to use a titration regimen with a starting dose of [Carbi] between 20 and 40 mg/day depending on the severity of the initial thyrotoxicosis (eg, if FT4 < 30: [Carbi] 10 to 20 mg, and if FT4 > 40: [Carbi]: 40 mg, while also considering clinical factors of severity such as weight loss, cardiovascular involvement and duration of symptoms). We use betablockers for the initial 6 to 8 weeks if there are no contraindications. Thyroid functions are checked at 4 weeks (often by primary care saving a hospital visit) after initiation of [Carbi] and the dose of [Carbi] halved. Once a patient is on a maintenance dose of [Carbi], TFTs are done every 2 to 4 months and the treatment continued for 12 to 18 months depending on the response. The patients are seen 4 to 6 monthly for 1 year after completion of antithyroid therapy and subsequent annual TFTs are done in primary care."
Interestingly, this backs up what my Endo told me, which is that he's not allowed to use B&R anymore because of the higher risk of complications (obviously a decision taken by each individual health authority, rather than a blanket rule). I suspect, being highly cynical about healthcare in this country, that the reason some places are still using B&R is because you can get away with doing fewer TFTs (it always seems to come back to money in the end).
Individual symptoms are important to - I was only put on 15mg Carbi despite my T4 being over 50, I assume because I was relatively unsymptomatic. Never needed the betablockers etc.
Lots of other interesting stuff in the article.
Hampster
I am currently on 40mg carbimazole and 100mcg levo. I have Graves which was uncontrolled with carbimazole.
I have found much improvement on the block and replace but still have palpitations and hot flushes the moment I get a wee bit stressed. Last bloods done beginning of September, next bloods mid January. Must admit I would prefer something somewhere in the middle of that. However, I have said I don't want RAI, so I am considered awkward but the endo admits I am difficult to treat
Terrible constipation! 
Underactive Thyroid and Collapsing.
How long should I trial Armour before I give up on it? Palpitations just getting worse.
Feeling so sad 
