I’ve been recently diagnosed with Graves’ disease by an endocrinologist. He says my levels are low to mild. I’ve been prescribed Neomercazole which is the same as Carbimazole (I think) I start with 2 pills (5mg x 2) per day for 10 days and then 1 pill (5mg) per day for 3 months. Reassess after that.
I’m someone who loves alternative and natural solutions but I’ve been told I need to take this medicine to stop the condition in its tracks. I eat healthy, take supplement and gluten free. Going to start the GAPS diet in January. Hope that will help too. My question is at a low dose how does it feel to take this medicine? Will I feel funny and are side effects common at a low dose? I’ve read up on the side effects of the medication and it is quite scary. I’d love to know how other people have felt and experienced the medicine? Thank you!
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lisaglow
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Did your endo ensure you have Graves by testing TSI or Trab antibodies.
Many doctors & don’t and assume you have Graves by high FT4 & FT3, or worse by looking at low TSH. It’s not uncommon to see Graves levels reach 3x the norm & start of 40mg of carbimazole.
Sometimes hyper is transient. Graves is continuous, when levels are over range continuously it should be treated.
It’s important to bring level down to a safe range and can be dangerous to have them very high and or high long term.
There isn’t a natural way to reduce levels and antithyroid doesn’t remove what’s already circulating it reduces what the thyroid makes. So it slowly lowers levels.
Obtain test results & lab ranges.
For full test you need TSH, FT4, FT3. TPO & TG antibodies (TRab & TSI) if graves suspected. Important to test folate, ferritin, B12 & Vitamin D.
Gluten issues common with autoimmune thyroid issues. Test for coeliac, will show allergy but not intolerance. Even If negative worth trialling strictly gluten free diet.
Many say cartinine acetyl & L forms is a good supplement to take along side antithyroid (can reduce FT3) I found it helpful but the affect seemed to wear off after 6 months.
Pleas put country in profile, assume you are not UK.
Thank you for your reply. Yes doctor did full test for antibodies. I did add country to my profile I’m not sure why it isn’t showing I’ll look into it.
I was started on carbimazole and I felt better quicker than expected but about 2 weeks in, I developed really bad itchy red hives covering my arms. The doctor wasn’t sure if the hives were due to the drug or changing thyroid levels but I was changed to the second choice drug for graves (ptu) and I definitely had no side effects for that. I just continued to feel better. Good luck.
Graves is an auto immune disease and quite why your immune system has decided to turn and attack your body, rather than defend it - is the 64 million $ question.
There is no cure for Graves but it is considered life threatening if not medicated as Graves tends to attack the thyroid and eyes which obviously, need to be protected and preserved.
The Anti Thyroid drugs - such as Carbimazole / Propylthiouracil ( PTU ) - Neomercazole - simply semi-block your T3 and T4 thyroid hormones rising higher and higher as this can put undue pressure on your heart and cause much more serious complications and slowly your T3 and T4 will fall back down into range and hopefully your symptoms relieved.
All the AT drug does is put you into a holding position - much like an aeroplane waiting to land - while we wait for immune system response to calm down.
There are 2 auto immune diseases that attack the thyroid and eyes and in order to know which you have the antibodies unique Graves are generally written as :-
a TRab - a thyroid receptor blocking antibody or a TSI a thyroid stimulating antibody :
In the UK we generally stay on the AT drug for around 15-18 months and have regular blood tests and the AT drug titrated down as our T3 and T4 levels lower and the hope is this is just a blip and your thyroid goes back into normal rhythm without the need for the AT drug at the end of this process.
When the thyroid is under attack from your immune system it can cause both hyperthyroid and hypothyroid symptoms - and when metabolism is running too fast as in hyper - or too slow as in hypo - the body struggles to extract key nutrients through food.
Non optimal levels of core strength vitamins and minerals can unnecessarily pull your health down further - so suggest you also ask for your ferritin, folate, B.12 and vitamin D to be run and we can explain where these need to be maintained to support you through this period of ill health.
We do now have some research you may find of interest :-
I found the most well rounded of all the research I did is that of Elaine Moore who has this AI disease and started researching when she felt no better having gone down the conventional mainstream medical route around 25 years ago - elaine-moore.com - and there are sections on holistic and more alternative treatment options you may like to consider.
P.S. If you arrange to get copies of all your blood tests and ranges at diagnosis and share these - forum members can explain these to you so you have a better understanding of what is going on -
Graves is a poorly understood and badly treated AI disease and the more you know and understand the better placed you will be going forward.
I also have Graves - I was diagnosed in some years ago.
I was put on carbimazole 10mg every day - yes they helped the condition, I felt less anxious and tired, not so fuzzy headed and the hand tremors stopped. I didn’t ache so much and wasn’t stiff. My palpitations really improved. My weight stayed relatively static. I was on the prescription for 18months. I was seen in Encrinology about every 3 months so was monitored.
After 18 months on prescription they took me off to see if the condition had been aided by the tablets. I went back after 3 months and then 6 months .. I was found to be in thyroid storm area ! I didn’t feel right .. so back on the carbimazole and advised to have the either a thyroidectomy or take Radio Active Iodine orally. I opted for the non surgical RAI. Not sure I would do that now though and in reflection the surgery may have been a better option for me - it’s a choice to make if offered.
I am now hypothyroid due to the over treatment with RadioActive iodine. Graves was hyper and the RAI turned me to be hypothyroid. However, of course I would go hypo if I had the thyroidectomy.
It’s a long journey but one which you will navigate - general gps do not know much in this disease the Encrinologists or certainly mine was excellent..
hope this helps - speak to the encrinologist and get as much info as you can.
I am on 10mg daily and still battling with the side effects of the medication, near on 6 months in, weight gain, feeling sick, headaches, depression, tingling fingers, puffy face and eyes - it doesn't sit well with me at all but they won't do anything else as the quality of my life is not something they are concerned with - Endo is a diabetes specialist and phones me once every six months at best and GP told me that T4 at 17 was still high in his opinion and would like to pull it down to Hypo levels. I am sure you'll have a better experience though as many do.
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