[Rosetoes]

#1059509

Anyone that can give me some insight, I would appreciate it. I am 56′ no family history of Thyroid disorder. I was diagnosed with Graves 16 months ago. I opted for a conservative approach with Methimzole and Inderal. I stopped the Inderal a couple of months in and have been on 10 mg of methimzole, then increased to 15 mg per day. 2 months ago my labs indicated that I was slightly Hyper so my Endo increased my dosage to 20mg per day. My labs yesterday showed mild Hypo with T3 95, T4 0.7 and TSH 4.68. Now she has reduced my Methimzole back to 15 mg per day. I have been quite tired and really constipated. This is really a downer for me and now I’m concerned about taking methimzole for awhile till this hypo calms down. I have headaches and palpitations like I did when I was hyper, been though my heart rate is 65 bpm.

Has anyone experienced this and if so how did it turn out for you. This is becoming very scary for me. I’m not liking how I feel and it doesn’t seem that I can get this under control unless I am being unrealistic in how long it takes to feel normal.

[beach45]

#1175247

Rosetoes,

I can relate; I was 51 when I went on Methimazole and for 23 months to see if doctors could get me into remission. Unfortunately it did not work out as even with dosage changes of 2.5 mg up or down, I either was going too hypothyroid or too hyperthyroid again.

I had the same symptoms as you and was very drug induced hypothyroid in Winter 2011 on 20 mg of Methimazole which I was taking for 3 months. I fought to not go on 30 mg as I was already gaining weight on this medication and I gained total 20 lbs. Then to get off the up and down Methimazole roller coaster I decided on RAI as my endocrinologist said all this up and down for me was not good for my body; I know others though who do quite well for years on a lower dosage of Methimazole to maintain normal levels or went into remission; for me, if I had to do it over again as my Graves was pretty severe prior to medication and I was the one who decided to try the Methimazole for months as my doctors advised against it only because of my circumstances, I would have just gone for the RAI immediately back in August 2010. I gained about 10 lbs after RAI and still trying to lose that and hopefully in time will lose all that weight I gained on Methimazole.

So from what you explain, yes this is all very normal and I insisted on more frequent blood work after I went severely drug induced hypothyroid in Winter 2011. It was so bad I could hardly keep my eyes open at times I was so tired and fat (still am) and sluggish and confused. A person has to be their own health care advocate and I am sorry yet in my Graves journey I found even certain endocrinologists are not very good at working with the patient with this disease as I found this is not a one size fits all kind of ordeal. I check to see if they specialize also in thyroid and not just diabetes! Most important is take care of yourself best you can and good communication with your doctor(s) and you know your body better than they do. You should hear some of my conversations with my doctor(s) as I have learned with this disease to put up with nothing. And if you cannot get through to your doctor to meet your needs, then you may need to move on until you find one who will work with you. Of course too unfortunately symptoms may linger even when numbers are changing I have found and there is a lot of patience involved with this disease as I have also experienced. I found there are no quick miracles or fixes yet it can get better!

I will say though with effort, it does slowly get better. The fears I had before are no longer there and things have got better in some way now post RAI. Yet for me, I hated the Methimazole up and down rollercoaster, yet that was me and not everyone has this experience as I hope others share. I only talk through 2-1/2 years of experience talking and working with many different doctors (4 endos included) and researching medical journals and many thyroid disease books and listening to others here as also I had to be careful not to listen to a lot of hearsay too on some other sites. It can get much better; this can be very normal what you are experiencing and just follow this as carefully as you can communicating with your doctors;I have an excel spreadsheet starting from August 2010 through now 6 months post RAI of all my blood work results and the dates and my physical symptoms and I give this to all my doctors as I know for myself where I feel best at what levels even if “within the ranges!”….Good luck! …. beach

[Kimberly]

#1175248

Hello – I have been on methimazole for 5+ years, and my doctor has had me split pills and/or alternate doses in order to keep me in the “normal” range. If you have another big swing with your next set of labs, this would certainly be worth discussing with your doctor. For example, at one point, I was taking 7.5 mg/day 4 days a week and 5 mg/day on the in between days.

Not all docs are in favor of this approach, but I’m glad that my doc is OK with it, as I tend to be very sensitive to small changes in dosage.

Take care!

[Rosetoes]

#1175249

Thank you both for your post. I am trying so hard not to go the RAI route. Im hoping to get this under control so I won’t have to take meds for the rest of my life. This may become an option, but for now, I not ready.

I am going to have another blood test in 5 weeks to see if the lower dosage takes me out of the hypo state. I find it interesting that your dosages are so low and that keeps your labs normal. Well I’m back to 15mg per day now and hopefully this will work for me.

Again, thanks for your input, it really helps.

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