TSH>100 and still on methimazole
Posted , 6 users are following.
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!
0 likes, 24 replies
clare61301 nt14
Posted
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
nt14 clare61301
Posted
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?
Eileen69894 nt14
Posted
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 ❤️.
nt14 Eileen69894
Posted
Hi Eileen, your numbers look so much like mine!
My doctor told me to stop methimazole and come back for lab work in a week. My first 3 days without methimazole were tough, I felt so fatigued and anxious.
My doctor suspects I might have Hashimoto’s and not Graves. She said people with Hashimoto have that spike in their tsh when first diagnosed and the reading of my lab in the beginning could’ve mislead the diagnosis.
So now we just have to monitor my tsh and see where it is at and based on that they can give me a proper diagnosis.
Thank you for sharing your story, just talking with someone who knows the struggle makes a difference in someone else’s battle!
linda187 Eileen69894
Posted
From what I have seen, both with research into naturopathic treatment methods and people who have posted to this Board, the kind of extremes in TSH of high and low occur when a person has Hashimoto's or Graves and Hashimoto's. It is possible to have both. The Graves antibodies attack theTSH receptors in the pituitary gland and the Hashimoto antibodies attack the thyroid gland directly. Hashimoto's is too sensitive to Methimazole and causes this back and forth in lab tests. I only have Graves and on 10 mg of Methimazole though my Free T3 and T4 normalized immediately in mid range, my TSH remained at less than 0.001 for two years until I added supplements to my treatment which then caused my TSH to rise into the normal range but not the extremely hypo range that you are reporting. I am now off medication and supplements and my thyroid test results have remained normal and stable since April and my antibodies were non-detectable when I stopped everything.
faisal95788 linda187
Posted
Hey , Can you let me know that what is method to determine that one's hyperthyroidism falls in category of Hashimoto's or Graves or both .As my doc didn't told me that categories .As in my case they have delayed treatment with radioactive iodine as they told me that i have high blood pressure and radioactive iodine is not good for hypertension issues and on the other hand nobody can't take carbimazole for more than a year as it starts affecting bones and other organs of body in degradation perspective .
linda187 faisal95788
Posted
Autoantibody testing is what determines the cause. For Graves disease the test is either TBII or TRAb. For Hashimoto's it is TGAb. Also the anti-TPO which measures inflammation level is usually quite high in Hashimoto's. I have taken Methimazole for more than a year albeit not on a higher dose than 10 mg. First two years (2007 to 2009) 10 mg, then after I added supplements, was decreased gradually all the time depending on my lab test results. This April, 2018 (that's 11 years) I stopped the Methimazole (dose 2.5 mg every other day) and supplements and my labs have been normal since April.