My consultant said I had graves
I was tested every 6 weeks and reduced my carbomizal to 15 mg and my levels have been normal for 4 months so why do I still need carbimazol. I have cone off proponal beta blockers but I’m still on apixaban 5mg twice a day
I’m seeing my cardiologist next month and he said if stable with my thyroid I can come off it
I want to come off all medication
If your thyroid hormone levels (by which I mean Free T4 and Free T3, not TSH) are "normal" with 15mg of carbimazole there is a possibility that coming off the carbi will allow your thyroid hormones to rise dramatically again.
I think people on anti-thyroid drugs tend to reduce very slowly, so perhaps dropping your dose to 10mg might be a first step, but then you'd have to drop to 5mg for a while then finally zero.
Do you have copies of your blood test results since you were first diagnosed with hyperthyroidism/Graves' Disease? If you don't I would suggest that you ask for copies from your GP and/or your endocrinologist. What doctors consider to be "normal" is any result that is within the reference range.
But as patients on this forum know, someone with a Free T3 level of 3.2 is likely to feel a whole lot worse than someone with a Free T3 of 6.5 (which is more than double the 3.2). But both 3.2 and 6.5 are within the most common reference range for Free T3 which is 3.1 - 6.8. And to continue my example, the person who feels best might be someone with a Free T3 of 5.8. Optimal results aren't always at the bottom or the top of the range, or even in the middle - we are individuals who feel best at various levels. But doctors are rarely interested in finding levels of thyroid hormones that are optimal for the patient.
Edit : Don't ask a GP or an endocrinologist for copies of blood test results. Ask the receptionists at the surgery, and the endocrinologist's secretary. You are less likely to face interrogation from them about why you want them.
Thank you this really helped I will check them My endo is obsessed with blasting my thyroid and said it would never go down
I am determined to get off Meds and this Firum is amazing energy one is so knowledgable
I feel so relieved
Once my levels were in the normal range my dose of carbimazole was slowly lowered until I was on 5mg once per day.This is the dose I needed to stop my thyroid overproduction.
After many months stable the doctors then stopped this dose to see if I had gone into remission. After several months my levels rose again so carbimazole was restarted. I was given 3 chances of stopping carbimazole over 5 years and each time I stopped it my thyroid started overproducing again.
Hello Glord and welcome to the forum :
The Carbimazole is an anti thyroid drug which blocks your own thyroid hormones rising any further and given time on the drug your T3 and T4 levels will start to fall back down into range by themselves, which they have done.
The thought may well be now, to titrate down the AT drug, and see if your T3 and T4 remain stable. It is a balancing act and may need fine tuning by the endo as it takes skill and knowledge to get the level " just right " so it is important that you keep a list of your symptoms experienced so to give feedback, as there is a risk of your levels falling further down the range and you experience the equally disabling symptoms of hypothyroid.
Both hyperthyroidism and hypothyroidism are the extreme opposite ends of the same stick which is expressed by where your T3 sits in its range. Too high a level of T3 for you and you are liable to experience hyper type symptoms just as too low a level of T3 for you and you are liable to experience hypothyroidism.
When your metabolism is running too fast or too slow it is difficult for your body to function well in any area, and this includes your ability to extract your essential core strength vitamins and minerals from your food, and would suggest you keep an eye on where your ferritin, folate B12 and vitamin D sit as these need to be maintained at optimal levels to help your through this difficult first phase of the disease.
There are generally two main reasons why this episode of over active thyroid has occurred and generally a blood test is run, prior to treatment to identify which thyroid auto immune disease is prevalent.
Both Graves and Hashimoto's AI thyroid diseases start with a period of hyperactivity and the only way to tell them apart is by running a blood test to identify which antibodies are over range and positive.
For Graves Disease the unique antibodies are generally written as TSI ( thyroid stimulating ) and or TR ab ( thyroid receptor blocking ) and this is the medical evidence which should be positive / over range and what your treatment plan and medication are based on.
Hashimoto's is not treated with anti thyroid medication as the T3 and T4 levels are generally not a high as when with Graves and they drop back into range by themselves and the antibodies for Hashimoto's a TPO and TG ab - can also be found in some Graves patients.
Anti thyroid medication for Graves Disease is generally prescribed for around a 15-18 month period - the AT drug blocks the thyroid hormone production and the patient feels better and the hope is this first phase of this disease runs it course, and everything reverts back to normal.
Some people are encouraged to have RAI thyroid ablation or a thyroidectomy at the very beginning of treatment, some people are encouraged to try and find " remission " within this time period and some people are on AT medication for years which personally, I think the most sensible option.
Ultimately Graves is a life long condition, and there are people on here, who medicate themselves, if and when, as they feel the need, when their life stresses cause an immune system response and sense they feel a little uncomfortable.
Some endos introduce Block and Replace whereby your own T3 and T4 are totally blocked by the AT medication and a dose of T4 is added back into your medication so you don't fall too far into hypothyroidism.
Other endos adjust up or down the AT meds as your T3 and T4 levels fluctuate :
There is the unknown factor in this equation - which is the level of your antibodies at any given time which, if still over range and active, can still be driving up your thyroid T3 and T4 readings.
After diagnosis little attention seems to be given to the antibodies, as there is no cure and mainstream medical have no answers as to how to control, adjust, manage this component of the disease.
Your thyroid is the victim in all this and not the cause ; the cause is your immune system attacking your body - why is this happening to you now, is no doubt the question.
Graves is said to be a stress and anxiety driven AI disease and there is likely a genetic, predisposition with someone in your extended family with a thyroid disorder.
You might like to read further on Graves and I found the Elaine Moore Graves Disease Foundation website the most well rounded, most well researched of all I read. Elaine has an entire section on the antibodies, and what you can do for yourself, to help understand this poorly understood and badly treated AI disease.
I'm with Graves and post RAI thyroid ablation in 2005 - and told at my very first hospital appointment that I was to have RAI the following year as " it was better for me " than the Carbimazole, although I was well on this AT drug:
I now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicating with full spectrum thyroid hormone replacement and am much improved now I'm buying the most appropriate thyroid hormone replacement " for me " and doing my own thing.
Sorry, I've gone on a bit !!
Great post!
Thank you this has really helped me to understand
Carbimazole doesn’t work by correcting the thyroid or reducing existing thyroid levels, it works by inhibiting the production of new thyroid hormone.
Stop taking & the levels will begin to rise again, taking too much means the levels eventually fall too low, you become carbimazole induced hypothyroid. (Temporarily). Adjusting the medication with careful monitoring to ensure you stay in range very important.
So when your doctor says “normal” they hopefully mean your FT4 & FT3 are in range. Often Doctors go by TSH but this is very unreliable and can appear in range but not correlate to FT4 & FT3.
What are your results?
How was your Graves confirmed as medics tends to treat all hyper as Graves. Have you had thyroid antibody test or a scan?
Also important to test folate, ferritin, B12 and Vitaming D. These are often low if hyper and can mimic & compound symptoms.
You can obtain printouts of your blood test results practice reception (don’t ask doctor) or arrange online access for GP records, which is extremely useful. For hospital results approach department secretary.
Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist just say they are for your records. You are legally entitled to them.
I do a lot of private testing between doctor visits and once in a while I'll include an antibody test. If it's high (which it almost always is) I know if I come off AT meds everything will shoot up again. I've been on 5mg for about a year now (and on AT drugs for about 3 years straight) and have no problem staying on it for as long as I need to. There are lots of studies that show that long term use of AT drugs are safe. I am never going to have RAI or get my thyroid taken out unless it's the only thing that will work. Just my personal preference.!
I've had Graves for about 13 years, have gone in to remission twice and have been on AT drugs on and off for probably 10 of those years.
If you want to come off the drugs I would for sure check your antibodies. You can have normal thyroid levels and still have high antibodies.
Thank you
Hello,I understand completely your wanting to come off medication but my advice would be to do it slowly, if you are taking 15mg then reduce to 10, wait at least 6 weeks get some bloodtests done and if your hormones are still within normal ranges and you feel good on that range, then reduce to 5 mg and then zero. I believe that is what most endocrinologist would do and that is what I am doing. Being in normal range doesn’t not mean you are feeling good, I was in a very low normal at 15mg and feeling really bad, now I have been on 10 mg for 4 weeks and I can feel starting to feel better, which tells me my next bloodtests will probably be at a better ”normal” range. Don’t just stop taking your meds, the purpose of taking them is to get to a point where your body does not need any, and for what I have been told and advised by many knowledge people in this forum, the best way is slow so ur hormones don’t shot up again and you are in square one again!
How long have you been on medication? The studies I have read suggest a minimum of 12 months, ideally 18 months, although some people are in a tiny dose of 5 mg for longer if they have TED or their hormones are still out of the most optimal range for them. You bad wear a Fitbit or similar Tom see what your resting heart rate is, I find it a great way to see what my hormones are doing in between bloodtests and it never fails. The lower my heart rate the lower the T4 and T3. Good luck and try bronzer your GP or endo before stopping your AT!
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