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in reply to: Share your Success Story! #1186293
Hi All!
I haven’t posted in a long time but I just wanted to say that after many years on methimazole, I have been in remission for 2 or 3 years now.
My Trabs is negative, though I still have a fair amount of antibodies in my bloodstream.in reply to: METHIMAZOLE long term?? #1185905Hi Conky,
I have been on methimazole long term. I was diagnosed in 2013 and in 2019 my trabs was finally negative though I still had anti thyroid antibodies.
So my doctor was weaning off the methimazole. Last year I started to forget taking the pills and since I was feeling alright I just went off them.
I just had bloodwork done 2 days ago and that included the Trabs and the antibody count so let’s see what comes up.
My endo said that sometimes you can go hypo after a long period of treatment.Good Luck!
in reply to: Graves and glucose #1185898Hi Kimberly,
When I was first diagnosed with hyperthyroidism my fasting glucose was a bit on the high side and the doctor told me it was probably due to an overworking thyroid.
When we were adjusting doseages I went hypo for a while and that sent my cholesterol out of whack.
I hope you are lucky and things get back to normal once you have satbilized again.in reply to: New to this and need advice!! #1185750Hi Kelly,
It took a long time for me to get to the right MMI doseage. At one point I had to be checked once a month, I was very reactive to minor changes of the doseage. So hang on in there.
I was diagnosed becaus my heart was racing and I kept loosing weight, so my PCP asked for a TSH, FT4 and T3 plus anitibody check. Then he referred me to an endo and the endo had me have a TRABS test and a nuclear medicine exam and all that confirmed I had Graves disease.
And now, after 5 years, I seem to be in remission and am tapering off the MMI.
So there is hope at the end of the tunnel.in reply to: Share your Success Story! #1183880I didn’t believe it would happen to me as when I was diagnosed i had a huge TRABS value (around 50) but 5 years after I started taking mmi my TRABS is now negative!
So we are tapering off the mmi. My endo told me it was very rare to get remission with such low doseages of MMI (I was taking 2.5mg from monday to sunday).
Funny thing is I went to see her because I have been feeling terrible, with exhaustion and joint and muscle pain, but all my values were normal range. So she prescribed a more complete bloodwork.
I am still fatigued, though, but hopeful.in reply to: side effects from uptake test #1185235Hello Bubbles 1,
I hope you are a bit better now. I also had a very enlarged thyroid, and my endo did not want me to do the RAI partly because of that. After 2 or 3 years of tapazole, I am finally satble, but I know there are little canhces to achieve remission. My thyroid and my nodules are getting smaller, though.
About the liver enzymes, I test them every three months because the tapazole may affect your liver so i hope you have checked in with your doctor.Good luck!
Virginia
in reply to: On ATD two years-plus? #1183788Hi all,
after more than 2 years of roller coaster, I seem to have stabilized. We have started slightly decreasing the doseage and I managed to go around 3-4 months before going to see my endo.
I had already noticed thath my thyroid was softer and smaller and this was confirmed by the scan I had monday. The goiter is indeed slightly smaller, albet a few millimeters.
So I am actually glad I did not go the surgery route and waited it out.And for all of you who are still suffering, there is hope!
in reply to: Is it normal to alternate dosage like this? #1184504Hi,
Not sure if it counts as alernating doseages, but 2.5 mg per day was too much for me, i would go hypo. So now I am taking 2,5 mg mmi Monday to Friday and nothing at weekends.
So maybe it is not that strange.Hi,
It was also very hard to find my sweet sopt, I would go hypo on 5 mg a day, then we decreased it to 2.5 mg a day and I was hyper. So now I am taking 2.5 mg from monday to sfriday and resting on weekeds.
I am also very sensitive to dose change, just increasing 5 mg per week would cause a dramatic change on my thyroid levels.
but finally, after almost 3 years, I have been stable for the last six months or so, my goiter is smaller and not as hard as it used to be.
I was hesitant on having a thiroidectomy because i was afraid of losing my singing voice but I think I would have done it otherwise (Iodine was not an option for me, I had almost all the contra indications). From others’experiences in this forum, having no thyroid seems to be much more manageable.in reply to: Vitamin and mineral supplements? #1184372My endo gave me supplements when I was first diagnosed, as I had lost a lot of weight but I later realised (afetr my endo had told me to chek other meds for lithium, as it tends to increase thyroid activity), that the vitamins I was taking had Iodine at 60% DDR. So I stopped the supplementation after checking with her.
I am taking selenium for my eyes (prescribed by my endo), because they were itchy and prickly. And it my case there seems to be a distinct correlation between selenium intake and decreasing internal eye pressure (thoguh I am fully aware this is purely anecdotal).
And she tests me every few months for calcium and B12 levels. Don’t remenber the viatmiin D though.
Anyway, these days I just take the selenium which comes with vitamin C and vitamin E. I am even afraid to take vitamins for my hair just in case it has some strange interference with MMI.in reply to: On ATD two years-plus? #1183764Just wanted to post an update:
I started to slowly decrease my mmi doseage at the end of november and I got my new labs yesterday: I’m still in the nomral range! Not totally a success story, but still encouraging. Plus my goiter seems a bit smaller (or could it be because I regained some weight?). Anyway, it is used to be really hard, and now if I palpate it I feel it is softer.
Yay!in reply to: Terrified of Graves #1184141Welcome PhysChic!
As others said, I think your anxiety is partly due to your hormones being out of whack. But after a few weeks on methimazole that should get better.
Actually, in my case, I was so relieved it was Grves, I thought I had a really serious heart problem and a friend of mine had recently died of a heart attack.
And since I was taking propanolol as a betablocker, that really helped with the anxiety.
One of the toughest things still, 2 years after diagnosis, is to accept I have to pace myself.
As for the side effects of methimazole, I get labs every 3 months to check for liver failure or decreased platelet counts and so far so good. And my stepmother has been on methimazole for 17 years with no side effect. I heve a fine needle aspiration every year to check my nodules (this time the doctor who was doing the scan tod me immediatly the nodules did not look cancerous so that was a relief). Still buliding up courage to have a thiroidectomy as RAI is not recommended in my case.
This forum helped me a lot, made me feel less lonely when I had moments of despair.
Good luck on your journey!in reply to: On ATD two years-plus? #1183760sandys1953 wrote:I have been on Methimazoline for over a week now and was told I should start feeling better within that week. But its been quite the opposite. I feel more nauseous, my heart rate is a little faster at times and I am quite tired still. I cant sleep at night and my muscles constantly ache. I know I may be expecting too much too soon, but the doctor did say I should see changes within the first week. I see my cardiologist tomorrow for my second EKG to make sure the Multaq and Methimazoline doesn’t interact.Anybody’s thoughts?
Sandy
Hi Sandy, in my experience, it takes around 4 weeks to really feel a difference. My endo always asks me to wait 4 weeks before I have a blood test after a dose change. And I do notice a marked difference in symptoms after 4 weeks.
Also, maybe you are not at the right doseage yet…
Hang on in there!
This disease has certainly taught me to be patient…Virginia
in reply to: On ATD two years-plus? #1183749bigad wrote:Thanks Kimberly/Flora! My Doc is fine with just an AM dose, but I was just curious if anyone split the daily dose between AM/PM (e.g. 1.25 mg in morning and 1.25 mg in evening) and if they felt a difference.Hi James,
When I was first diagnosed, I was started on 15mg a day then 10mg per day. My endo told me to take the 10mg in one dose in the AM. At that point I had no idea what the normal doseage was and it seemed a bit strange to me to take 2 pills at the same time. Besides, the leaflet said we should take one in the AM and one at night, so I tried that for a while and felt actually much worse, energywise at least.
Then I realised 10 mg is quite a small doseage so I stopped worrying.Virginia
in reply to: Success with diet changes? #1183969Just wanted to snelsen’s post, I asked my endo and apart from the seaweed, she aso told me to avoid seafood like shrimp, mussels, crayfish, lobster… but I am allowed to have fish 4 times a week.
Apart from that, she had no special recommendation.Virginia
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