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Also, as a side note, I did try 1/4 of a 5 mcg pill of Cytomel with my Synthroid at one point when my T3 was at the lower end of normal, but I went hyperthyroid after being on it for a week. Truth is that after lowering my Synthroid from the 112 all 7 days to the 112 five days and 100 twice a week, my T3 numbers actually improved. I think it just takes time for your body to be able to convert efficiently the T4 to T3. Everything just takes time, yet we don’t want to wait because (in the mean time of waiting) we feel like crud. Sometimes we just have to wait it out and let our bodies do their thing even though it’s a tough road sometimes.
I also eat very healthy 98% of the time
and workout most days- I take care of myself- which is important.Hi!
I had my surgery 2 years ago. I’m on Synthroid only (brand name). I take 112 mcg five days a week and 100 mcg twice a week; it is a good combination for me. My TSH is at 1.2 with my free T4 in the upper range of normal and my T3 is finally getting to the upper range of normal! I feel pretty good. I haven’t gained any weight, and I am far healthier now than when I was hyperthyroid. My life is busy- I have 4 boys and I homeschool, so it’s important to me to be well and have energy for my family.
I started on Synthroid 100 mcg after surgery. Six weeks later, my TSH was 6.35 I think, so I was increased to 112 mcg. That actually worked pretty well for awhile, but I ended up having slightly hyperthyroid symptoms. My TSH ended up being 0.29. So, I lowered my 112 to 100 for two days of week and left the 112 for five of the days- that works!
It took about 4 months for me to feel well after my surgery. I had insomnia (still deal with that somewhat), some anxiety still, felt down (not depressed though)- just moody a bit, daily headaches- just a tough time getting adjusted to life without a thyroid. Plus, life still moved forward in our home with my youngest being 7 months old at the time of my surgery- but, now I can say all those symptoms are totally gone (except for the insomnia which comes and goes).I’ve found that, for the most part, my numbers do reflect my symptoms. So, going by labs for me has been fairly accurate.
I would also say that I am better off on Synthroid as opposed to methimazole. I couldn’t take methimazole because it escalated my liver enzymes quite a bit (8 times the normal amount), but I also didn’t feel great all the time on methimazole, so Synthroid is better. It isn’t perfect. It isn’t pre- Graves me, but it is good.
I work out- cardio – for 30-60 min. most days a week- so I have energy for that too.Ha! Yes, I experienced that a few times. My husband thought I just had my hair clipped back too tight, but I knew I didn’t. I thought a bug had bitten me; so, I kept feeling around for some critter in my hair where it hurt.
It went away though!
Hi!
Congratulations on moving forward! Sounds like you’re off to a pretty good start! Yes, all the ups and downs are normal and will most likely continue until your Synthroid/ levo. is the right dose. Make sure to get labs in 6 weeks or so to see how things are looking. Any sooner than that will not accurately reflect what’s happening. My dr. said it takes about 2 weeks to 2 months for the body to be depleted of its own natural stores of thyroid hormone- so you’re up and down bc of recuperating from surgery, your body adjusting to life without a thyroid, using up your thyroid hormone stores and getting used to levo. It took me about 4 months for everything to even out (one dose change after the initial dose of 100 mcg after surgery). I was increase to 112 mcg and then everything started to be better after being on that dose for 2 months.
I had to lower my dose awhile back (back to 100 mcg twice a week and 112 mcg five days a week as my TSH went to 0.29). I’m doing pretty well now. No more cruddy symptoms. For the first 4 months I had daily headaches, bad insomnia, low level depression, anxiety, night sweats, heart palpitations 2 night- probably anxiety related). It was a little rough. But, at that 4 month mark all of the above went away. Some of the symptoms crept back- so I got my labs done and sure enough, my TSH was too low. So, we adjusted my meds. those 2 days, and I felt better again.
Take it easy and give yourself time to get better- it is a journey, but you will be well. I do notice that I tend to catch every stupid cold out there since my surgery- so my doctor suggested probiotics, non GMO foods, exercise, healthy eating, and a good multi- vitamin- basically- take care of yourself!!! Good luck!
Hi Jeremy,
I had a similar situation. I was taking 5 mg of methimazole once a day, and my liver enzymes escalated to 8 times the normal range from the start of taking the medication to 7 weeks into it (I didn’t get labs earlier). I had labs done before starting methimazole, and my liver enzymes were completely normal. So, when I got the lab results back with the very high liver enzyme reading, the on call doctor told me to stop the methimazole immediately. He had me come in and get liver labs 3 days after stopping to make sure the enzymes were coming back down (which they were, but not totally back to normal at that point). My doctor also had me have an abdominal ultrasound to check my liver and make sure everything was okay (once my enzymes were back to normal). Everything was fine, and I didn’t have any irreversible damage.
So… that left me in a bit of a pickle! I couldn’t take methimazole and PTU was not recommended. Fortunately, in those 7 weeks, my thyroid levels returned to normal. So, 6 weeks later I had my thyroid removed surgically. By the grace of God I somehow managed to keep my thyroid levels stable those 6 weeks I was waiting for surgery, but I was an emotional wreck- worried silly that I would go hyperthyroid again. Actually, the week before surgery, I could feel the anxiety and heart rate creeping up again, but that could’ve been anxiety due to the surgery! At any rate, I had the surgery and am so glad that I did! In an odd way, not being able to take anti- thyroid drugs was a blessing. It forced me to make a choice and be able to move forward with my life. Finding the dose for Synthroid takes some time and patience, but I believe it is easier for our bodies to handle and also once you find that right dose, in general, it stays the same I think- more or less.
I would ask the doctor about what his suggestion is for your next step in treatment. I am really happy that I chose surgery, but I know others are happy with RAI. It is ideal to have your thyroid levels normal before either surgery or RAI, but I know people who were unable to achieve that and had surgery anyway (a personal friend). She had a thyroid storm that landed her in the hospital. They put her on betablockers and SSKI drops- she had her surgery a few weeks after she got out of the hospital from the thyroid storm. I know she wasn’t on any anti- thyroid drugs for any length of time to get her levels normal. So, although not necessarily recommended, I know it is done in certain circumstances. I am by no means telling you how to care for your body as I am not a doctor. But- just sharing my own story and that of a friend of mine. Good luck to you.
Hi!
I decided to stop by and see what’s going on on the forum! Haven’t been here in awhile. I noticed your post. I didn’t have the type of allergic reaction you had to methimazole, but I had the liver issues with it. My enzymes escalated to 8 times the normal range in just 7 weeks of being on 5 mg daily- so I had to stop taking methimazole that night (as the on call doctor told me on the phone). I was so freaked out being on no medication at all, but PTU was not recommended and methimazole was out of the question.
So… I opted for surgery. Six weeks later I was able to have my thyroid removed and have been doing pretty well since then!
It’s been a year and almost 9 months since my surgery. I’m much healthier now than I was when I was hyperthyroid. I take Synthroid- 112 mcg. five days a week and 100 mcg twice a week. That combination works great for me. Has my TSH around 1.5. At 112 mcg everyday my TSH was around 0.29- so a little too hyper. I understand the overwhelming fear/ frustration with all of this. I cried and freaked out quite a bit that first night being off methimzole; the LAST thing I wanted was to slip into hyperthyroidism again. That was the scariest time of my life I think- being hyperthyroid.In a way, even though I am dependent on Synthroid for life, I am relieved to know that I’ll never be hyperthyroid again. It’s good to know that. I have to realize too that there are many people out there dependent on daily medication to live- whether it be for diabetes, asthma or anything else.
I hope the itchiness goes away for you, but if it doesn’t, know that surgery isn’t a bad a option if there are no other options.
Hi!
You sound a lot like me. I too am on 112 mcg of Synthroid and my free T3 levels were at the lower end of normal. I wanted to add Cytomel so I was prescribed 5 mcg. I decided to just take 1/4 of a pill bc I know how I am with medicine (a little goes a long way!). After a week, hyperthyroid symptoms returned (diarrhea, anxiety, feeling shaky, everything seeming extra bright visually) so… I stopped. Kind of a bummer, but it’s okay. I’ve gotten more accustomed to life after TT as time has gone on. I’m one and 1/2 years post surgery and am on 112 mcg five days a week and 100 mcg two days a week as my recent labs showed me being slightly hyperthyroid (TSH of 0.29) Now I’m back up to 0.6. I don’t think we’re ever pre- Graves selves again, but I’m happy and I’m well. So, I can’t complain too much.
Hi Jason,
I had my surgery about a year and a half ago and haven’t had any voice issues. I too like to sing in church, but do not officially sing in the choir since I have 4 boys to care for (including a nursing toddler). My older 3 actually are altar servers now, so it’s just the little guy I have to care for during the liturgy. Anyway… for the 1st three weeks after surgery, my voice was raspy and weak, tired easily, and I felt like I was talking from the upper part of my throat. About a month after surgery, it was better, but still I got tired easily and I couldn’t sing in my normal range. It did get totally back to normal though- I can’t remember how long- maybe a few months? I can sing now as I did then without any difference at all.
I am really happy I had surgery, but everyone is different. Good luck to you, and I hope all goes well.
