Hi all, I was diagnosed with GD in May 2018 and my tsh levels were 0.001
After 5 months of gradually increasing methimazole (from 5 mg to 25 mg) my tsh went from 35 and now is over 100. My tsh number and symptoms say that I’m hypothyroid. My doc hasn’t changed my medication but told me to increase the methimazole dosage. My hair started falling out in clumps and I have no energy to do anything, depression and anxiety became my two best friends.
My GP said to go see a specialist and my appointment is not until 2 weeks. I wanna know if it’s ok that I’m still taking methimazole since my tsh over 100 and my T4 is low. Has anyone went from hyperthyroidism to hypothyroidism and what medication were you prescribed?
Thanks in advance!
In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.
In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.
In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.
In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.
In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.
In m of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.y opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern
In m of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.y opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern
In my opinion you should not be on Methimazole if your TSH is 5 or over. I have seen this pattern of hyper to hypo in patients who have Hashimoto's thyroiditis. Some patients who have Graves disease also have Hashimoto's as well and they do better treating their disease with about 3,000 mg of Regular L-Carnitine and adjusting the dosage downward as their labs improve.
so are you suggesting that I stop taking methimazole until I see an endo? if i stop taking it now will i have any side effects?
hey ,i'm on same medicine neomercazole 10 mg/day .I have started with 15 mg/day when my tsh was 0.001 .After a year ,my tsh reported at 5 and doc reduced dosage to 10 mg/day .Because tsh if more than 6 is categorized as hypothyroidism .I wonder why your doc is continuing and increasing dosage .You should see another doc immediately as disturbance in hormones is linked to critical body functions like heart rythm,fatigue,hair fall,appetite . In the long term i have asked my doc ,what to do further ,whether to continue medicine or not ,she said that i have been given radioactive iodine to cut this medicine .However i'm not considering this and just continuing medicine .
Sorry my last response hiccuped 5 times. You need to discuss this with your doc. But not only should you discontinue the Methimazole but you need to add thyroid hormone replacement if your labs are correct. I would ask him to repeat the tests and if the same results definitely ask him about stopping Methimazole and starting thyroid hormone replacement, If you find after doing this that you again go hyper, then I would check antibodies for Hashimoto's and if positive for that, if you go hyper again take 3,000 mg of Regular L-Carnitine instead of the Methimazole, I usually see your pattern in Hashimoto's. You may have Graves as well but if you have Hashi's, both the Methimazole and the thyroid hormone replacement will be too strong but the Carnitine will regulate it better. Discuss all this with your doctor. Most docs do not know this about Hashimoto's but I have seen this pattern in patients on this Board. They don't know about L-Carnitine either but I was fortunate to come across a research article on this. It was done in Italy around 2001.
Sorry my last response hiccuped 5 times. You need to discuss this with your doc. But not only should you discontinue the Methimazole but you need to add thyroid hormone replacement if your labs are correct. I would ask him to repeat the tests and if the same results definitely ask him about stopping Methimazole and starting thyroid hormone replacement, If you find after doing this that you again go hyper, then I would check antibodies for Hashimoto's and if positive for that, if you go hyper again take 3,000 mg of Regular L-Carnitine instead of the Methimazole, I usually see your pattern in Hashimoto's. You may have Graves as well but if you have Hashi's, both the Methimazole and the thyroid hormone replacement will be too strong but the Carnitine will regulate it better. Discuss all this with your doctor. Most docs do not know this about Hashimoto's but I have seen this pattern in patients on this Board. They don't know about L-Carnitine either but I was fortunate to come across a research article on this. It was done in Italy around 2001.
Hi, I also have GD and suffered a thyrotoxic storm in May this year. I am now on a programme of block and replace. I started on 40mcg of Carbimazole and once my levels came down I was then prescribed 100mcg Levothyroxine. This worked well for a couple of months but then I started to feel tired and lethargic and generally unwell again. Blood tests then showed I had become hypothyroid. My dosage was then increased to 125mcg of Levothyroxine alongside the 40mcg of Carbimazole. I am now stable and blood tests are all in the normal range and have been for a couple of months now.
I stop medication in May and they will then see if I have another thyrotoxic storm. Tests have shown that my genetic testing is high with a high antibody reading. If everything goes haywire again they plan to remove my thyroid, which I understand is not without complications. Clare
To clarify, did you have radioactive iodine treatment?
No .Still not .Doc just indicated future remedy .I have to visit Doc in next week after getting fresh reports of tsh and t4 .After getting my results ,doc will prescribe future course of treatement .
However iodine treatement has one big con ,it can cause birth problems in babies born from iodine treated patients .
I went to see another doctor today to get a second opinion and she said to stop methimazole immediately and come back in a week for blood work to see where my tsh and t4 will be at. I’m still going to take propranolol for 1 more week, gradually lowering the dosage and then cutting it off completely as my heart rate is at 55 bpm constantly.
I don’t know why she increased it either, it made me miserable for quite sometime. I went to see another doctor and she said to stop methimazole and come back in a week for lab work. Rai and thyroid removal should be last resort imo, I hope you don’t have to go thru that. Good luck!
Hi Clare, Thank you for sharing your story. Were you hyperthyroid first and then became hypothyroid? I was wondering what exactly happens when you experience thyrotoxic storm?
Hi! I went from .01 to 130 TSH. It was horrible! I'm so sorry you are going through this. At first when I was diagnosed with Graves and they put me on Methimazole nothing happened. He kept raising the amount and I stubbornly stayed at .01. Then all of a sudden I spiked to 125. My endo first cut my methimazole in half, and when my numbers continued to climb he took me off it completely. Then my numbers swung back down to .01. At that point we slowly added Methimazole back in and I've been bouncing around between .4 and 4.7. But at least that is better than 0.01 to 130.
I was first diagnosed with Hashimotos and then years later with Graves. There is debate among medical professionals regarding whether you can have both, or whether you have had Graves the whole time, and the Hashimotos antibodies are a false positive. They say that you can have Graves and Hashi antibodies and still have Graves. But you can't have Hashi with Graves antibodies, if that makes sense. Anyways, you should start to feel better within about 10 days as your numbers fall, it'll be about 6 weeks before it's completely out of your system though. You might end up swinging like I did, but hopefully not. I'm not much into alternative medicine, but I found acupuncture helped me with the symptoms (like anxiety and depression and just overall feeling like I was in hell) while I went through the swings. Hang in there. You'll feel better as your numbers stop dropping <3.