I went to see my endo hoping by now he would tell me to reduce my dosage to 5mg. And eventually stop it completely. My investigation result seems to me within range. I wonder why I should continue this medication...
I should have asked this when I was sitting there in docs office feeling like somebody fed me something sour but I was just too depressed to hear him say I should continue my current dosage and expect at least about two years to be on medication.
But why though? I am sorry but I just don't understand how this works and however much I try to research on this my questions never end.
I've asked this question before but I want a further clarification if anyone could help:
What if I just stop the medication? What happens if I avoid taking it for maybe a week? Does hyperthyroidism get worse than it was, do I get withdrawal symptoms?
I am sorry but I just didn't want to hear I've got to be on medication when I feel like I'm generally fine.
Did your dose get reduced in May? Your numbers were hypo then, a reduction would explain the improvement in June. What dose are you on now? You’ve only been diagnosed since March, that’s no time at all. It is absolutely standard to stay on a low dose for at least 18 months, more if needed. This is a marathon, not a sprint. If you stop your medication whilst antibodies are still positive you are highly likely to relapse and be right back to square one. I would say you’re not far off reducing to 5mg, see what next months results are like.
Agree with Coconutty, treating Graves is a marathon not a sprint. I was treated with block and replace and I was told that my hospital treated ‘with B&R and that that was the fast way’ and that it would take a year and it did, it took exactly a year.
So that says to me that treating by titration which is how you are being treated, will take a lot more than a year - your endo says two years. So starting treatment in March is not much time at all.
If you are feeling well why do you want to stop taking your medicines anyway? Taking them is why you are feeling well.
Just very anti synthetic drugs of any sort..I've always been a herbal nut. I do understand in the current situation there isn't much of a choice, but the idea of taking meds just makes me very depressed.
I do feel better physically, than I did before. But mentally not so.
i think mentally iit takes a while with Graves.. I see where you’re u are coming from but I’d probably give it a bit longer.
I went totally gluten free about five years ago, after I was in remission - I developed inflammatory arthritis- yet another autoimmune condition to add to my collection - I had read on here that it benefited a lot of hypo patients and whether it’s a coincidence or not my thyroid antibodies have come right down to almost nothing so it might be worth giving that a try. I don’t know if they would have reduced anyway without being GF but I certainly won”r go back to eating gluten. It also reduced my CRP. Wonder if that might hurry things along for you.
Thanks..that's a lot of reading though and I'm not very good at concentrating on anything lately. I guess I should be sleeping but I can't sleep. Will try to give it a try hehe
One major important reason to continue with the carbimazole is to keep the Graves under good control. This reason is something that all dumb doctors never tell u upfront, because if they do, a lot more of those with Graves, will understand how important their carbimazole therapy is, be it for 18-24 months or continuous.
Uncontrolled Graves, over time, can lead to an array of serious heart problems from arrhythmias to heart failure, and Type 1 diabetes, thyroid eye disease, etc. These conditions, once developed, go on to become separate independent health conditions that need to be managed, on top of the Graves. As a whole, they end up putting one in a poorer state of health and increasing one's risk of mortality.
It is a good thing your Graves responded quickly to the carbimazole. But it's still very early days yet from diagnosis in early March and your initial levels were relatively high. Carbimazole needs time to work. Your levels are still fluctuating a fair bit.
Your TraB antibodies level is high but not excessively so. Being on carbimazole will help bring it down. TraB is an indication of Graves disease activity.
Use this time on carbimazole to fix your body and put it in a stronger condition to deal with the Graves. Boost your immune system. Learn to manage stressors. Reduce stress. Stay hydrated. Eat a balanced diet. Get sufficient rest. Supplements may help.
All this will be important in the near future if u are trying for remission. Being in good condition will increase your likelihood of staying in remission. 50-70% who try for remission, relapse.
I wish you well, and hope this information will be useful in helping u on the course to recovery.
Thank you so much that is so very helpful. This is the third doc so consulted and finally settled with but none have given me even that much information.
If you could help, I've got one more question I havnt got a solid answer to; I've got the impression that staying on this medication will bring on hypothyroidism eventually. And that includes gaining weight, metabolism slowing down, further depression etc. I wonder if that is so in every case of this medication? And is there a way to avoid that?
I think you just have to be tested regularly. I was tested after four weeks on 20mcg carbimazole and there was basically no change so my endo - who I hadn’t seen - contacted me by letter telling me to increase my carb to 40mcg a day until I saw here in another two months time. I didn’t have another blood test until the week before my appointment and I was quite hypo by then. Once I started on my levothyroxine the hypo stopped.
The moral of that is to be tested fairly frequently so that you don’t become hypo. You feel different to how you do when you are hypo but you still don’t feel good.
I wasn’t depressed and my short tempered ness disappeared but I went back through my pre Graves weight - I had read in Dr Toft’s little book ‘Understanding Your Thyroid’ that I would and I thought ‘no chance’ but I did.
I think you need to eat well, I ate lots of oily fish, chicken, green vegetables - well I aimed for a rainbow of vegetables, nuts and seeds and some fruit, I totally cut out sweets, junk food and fizzy drinks.
As advised by my pharmacist when I started on carbimazole I always took high strength slow release 1000mcg vitamin C with the carbimazole.
I do my own home fingerprick blood testing and keep my vitamin D and B12, folates and ferritin up near the top of their ranges although I didn’t have to do anything to keep the folates up and my ferritin is above the limit and as I said before I went totally gluten free after I went into remission because of other autoimmune conditions. All sounds a bit control freak but I think I felt so out of control with the Graves that doing what I did at least felt like I was able to do something.
I kept up with my gym twice a week and Pilates once a week although at a greatly reduced level back then but it was a way of saying ‘stuff you ‘ to Graves and I gradually got back to cycling and long distance walking again.
I’d say if you keep on top of your blood tests and make sure you aren’t going hypo then you needn’t become hypo although saying that my TSH is creeping up a little bit (still mid range ) but it’s taken seven years so far - I am wondering if my thyroid will eventually burn out in which case I’ll be back wanting a top up with levo
I guess the way most doctors are trained is severely wanting.
A couple of things to highlight before addressing your very smart and important question; the brain fog when under stress is awful : (
Other important and very real dangers of uncontrolled Graves is 1)thyroid storm, when a bunch of thyroid hormones are dumped into your blood stream by the malfunctioning thyroid resulting in potentially fatal symptoms, 2)severe quick weight loss down to your muscles which wears down your body and puts you at risk of osteoporosis.
And do not overdo physical activities. When having Graves, the stress from physical activities is the same as mental stress. They will trigger Graves symptoms.
I'm happy u found the info useful. It was gained over the last few years and corroborated against my own disease course, and the experiences of others shared on this site.
The answer to your question as mentioned by Fruitandnutcase is regular testing. There is a standard protocol doctors must follow upon administering carbimazole.
I see from your notes, u were tested first in March, then May and June. That is good. The initial testings are usually within a shorter time frame because of the high/higher starting carbimazole dose, which is then usually titrated downwards as hormone levels come within range.
U can see why the frequent testing at this stage is so important. Here is the crux of your question. The frequent testing will catch the point before u tip into a hypothyroid state as it will allow your carbimazole to be titrated to a level that keeps you within normal range.
However, should u go under, u could start experiencing hypo symptoms like palpitations for eg. as your heart rate is slowed down. Different people experience different hypo symptoms, so u should watch out for anomalies and if anything feels odd, have a blood test done before the next appointed date so your carbimazole can be tweaked.
Your worry about weight gain, slowing metabolism, depression, these take time to happen. And in this instance, it is unlikely, given that you are doing regular monitoring and you will not be hypo for a long period.
What were your carbimazole doses from the beginning to the current 7.5mg?
Carbimazole therapy, going forward, the goal is to get your levels stabilised within range, then have you remain on the lowest possible dose that keeps you in range. When stable, testing will lengthen to 3-6 month intervals depending on the individual.
At 18-24 months, the doctor will probably suggest that you try for remission. At that point, remember to get your TraB tested. If it's still not in range or perhaps at the high end of the range, it would not be a good idea to stop the carbimazole to try for remission. Chances of relapse will be high. Consider instead, carrying on perhaps for another 6 months on carbimazole and then retesting.
Also take into consideration your symptoms. Blood levels can be in range but you may not feel well or could be experiencing a variety of symptoms over the course of the disease, which may indicate it may not be a good idea to stop the carbimazole. There is no set time frame for stopping carbimazole.
Different people experience Graves differently because we come to it with different body conditions.
Your long post is exactly what I have been searching for. Thank you so much, that makes sticking to regularly popping the meds seem productive and so much easier.
I actually was started on methimazole 20g. That brought on a severe rash . I had no idea it was associated with the medicine so delayed going for consultation. Later on in the next doc visit after a month of that, it was changed to carbimazole (with levocetrizine for 10 days) and reduced to 10mg. And again after a month further reduced to 7.5mg which I am on now.
I was careless with taking meds because I didn't understand and didn't see the point. Thank you so much, this would help me prioritize bieng more careful on sticking to due medication
Not really sure what the initial trigger was. But it was discovered about 5 months post pregnancy. Although it's not pregnancy related, I was going through some dark depression during those days.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
5mg carbimazole too much & 2.5mg too little 
Lab Results, taking Naturethroid-Comments Please
Graves and TSH levels too high on Carbimazole - help!
Primary hyperparathyroidism? T3,D3, too high? Disappointing Endo visit
Graves - regaining fitness and long term carbimazole 
