[adenure]

in reply to: unsure #1174084

Hi,

Welcome I was diagnosed with Graves after my 4th baby was born. I felt fine the first 2 months of his life, and then things went bad pretty quickly! My endo did antibody bloodwork and a radioactive uptake scan to confirm that it was Graves (instead of postpartum thyroiditis). If you’re breastfeeding, and you do the uptake scan, you will have to wean temporarily (the number of days depends on the radioactive material used for the scan).

I would suggest trying ATD’s (anti-thyroid drugs) like methimazole or PTU to start as you’ll be able to continue breastfeeding (if you are nursing) on those medications as long as they don’t exceed 20 mg. daily (methimazole) or I believe 250 mg PTU (not sure on that one though). Plus, you will hopefully get your numbers leveled out (thyroid levels) and you will have time to think about whether you want to continue on ATD’s, choose RAI or surgery. If you choose RAI, you would have to wean your baby completely and not be able to nurse again. But, if you’re not nursing, that’s not too much of a concern.

It’s good to have a choice in treatments because no one treatment or medicine is right for everyone. I would ask for antibody testing though (blood work) to have a more certain diagnosis of Graves vs. postpartum. The uptake scan is the only 100% guarantee for diagnosis, but antibody testing is 95% accurate as my endo told me.

[adenure]

in reply to: Confused – Post RAI on Synthroid Normal Experiences? #1174086

Hi!

I think we’re in the same boat wondering about Armour/ Nature throid. For me it’s not weight, but headaches.

As far as a starting dose, it seems like 75 is low. From what I understand the starting dose tends to be determined be weight- 1.7 mcg of Synthroid per kg. of body weight. I was started at 100 mcg. then moved up to 112 mcg 4 weeks ago. This seems to be the right dose for me as my TSH went from 6.35 to .79 after the 112 mcg. increase after 2 weeks. I am 5′ 4″ and weigh about 118 lbs.

I’m 38, so I don’t know too much about menopause, but do you think that could be contributing to the weight issues? I’ve heard T3 (cytomel/ natural) can help with weight loss (anecdotal web stories), but I don’t know- I guess it might.

If you try Armour or Naturethroid, let me know- I’d love to hear your experience if you end up wanting to or being able to do it.

[adenure]

in reply to: What would you do? #1174074

Thanks- I’m just worried about possibly screwing up all that is going right on Synthroid just to see if I can get rid of headaches which aren’t terrible… but, a nuisance none the less. I don’t know what to do. My endo did say I’d need more testing bc the natural stuff varies more. I’m so sensitive to meds. I worry about heart palpitations and stuff like that- I asked him about that as far as getting the direct T3; he said dosed properly, it wouldn’t be an issue. I don’t know; I guess it’s my call. Just wish I knew what to do.

[adenure]

in reply to: Switching from methimazole to PTU..back at square 1 #1174042

Hi!

I’ve heard that PTU can cause muscle cramps/ spasms (like methimazole can cause hives). I had liver issues with methimazole, so I had to stop it as well. PTU wasn’t recommended to me bc of it being likely to have issues with PTU (liver wise) if one had them with methimazole. You can see on my siggy below that I opted for surgery. I have to tell you that I’m now 2 plus months post surgery and am starting to feel pretty darn good again! My Synthroid was upped to 112 mcg in the last 3 weeks, and I’m feeling better. Not perfect yet, but much, much better. If PTU ends up being the cause of your muscle cramps, I would suggest entertaining RAI or surgery. It feels good to be myself again (or close to it) and know that I don’t have to worry about being hyper anymore. Good luck!

[adenure]

in reply to: Chronic joint pain #1174023

Hi!

Have you had your thyroid labs run lately? Do you still feel this way when your numbers are in range? I know that joint pain and fatigue are symptoms of hypothyroidism. When you get your labs done, do you get your free T3 done? If your hormone levels are in the upper part of the normal range, I’m not sure what it could be. Maybe trying a different thyroid replacement? Are you on generic Synthroid or brand name? Sometimes the fillers in generics can effect absorption. Having been on replacement hormone for the last 10 years though, you probably know all of this! Taking the meds. on an empty stomach, waiting to eat an hour, avoiding calcium, iron, soy and high fiber foods after taking your medication. I don’t know- I wish I could be of more help, but maybe having your labs run again if they haven’t been recently would be a good starting point. It’s normal I think for us to think any time we feel badly, that it must be thyroid/ hormone related, but it may not be. I hope you’re able to find out what the source is. Are you taking Advil or a lot of pain relief for the muscle aches? Maybe the ulcers are caused by the Advil? One of my friend’s mom got ulcers from taking Advil daily.

[adenure]

in reply to: Migraines #1174014

Hi,

I think it could be fluctuating hormones. When I was hyper and now (as I am getting closer to the right dose of Synthroid after my thyroidectomy), I’ve experienced headaches. They’re not migraines, but they are a nuisance. Of course, it could be something else entirely, so I think getting your thyroid labs done (if you haven’t recently) would be a good thing to do. Also, maybe just a basic run of different blood work to check other things as well.- maybe a vitamin deficiency or something. I would start with the labs though.

[adenure]

in reply to: Is surgery not an option if I can’t take Methimazole or PTU? #1173991

Hi!!!

Yes, you sound very much like me! I was diagnosed with Graves after my 4th baby and took 5 mg. daily of methimazole for 7 weeks. My labs showed elevated liver enzymes 8 times the normal amount, however, the methimazole did get my thyroid hormones stable (euthyroid). Thanks be to God, they stayed stable the 6 weeks I waited to have surgery. I had a total thyroidectomy 2 months ago. My surgery went smoothly with no complications. I am on Synthroid now and yes, I am still breastfeeding my now 9 month old.

Like you, my endo. really wanted me to do RAI because he felt it was less invasive, safer, not as many factors to consider. He tried to convince me on 3 different occasions, but he DID support me in my choice for surgery even though he didn’t recommend it. That is very important. You mentioned your hormone levels are normal right now. I would ask your endo. to have your labs tested weekly until your surgery (if you decide to go that route). I had my labs done weekly up until the last week before my surgery when I started taking the potassium iodine (SSKI) drops to prep. Those drops alter hormone levels, so a lab at that point wouldn’t make sense. Again, I was off ATD’s for 6 weeks leading up to surgery and just had weekly labs to make sure I stayed euthyroid. I was not on methimazole or PTU during surgery or for the 6 weeks leading up to it.

I know Shirley didn’t wean her baby while taking SSKI drops, but my pediatrician did want me to temporarily wean my baby for the 7 days I took the SSKI drops. I pumped and dumped those 7 days and it was tough, but well worth it. I kept my supply up and was able to nurse after surgery and am still going strong there. SSKI drops shrink the thyroid, draw blood away from it and also help with hormone levels if taken for a short period of time (up to 2 weeks) otherwise the drops can make hyperthyroidism worse. As far as PTU, my endo. wasn’t opposed to entirely, but he didn’t recommend it, and I wasn’t comfortable waiting to see if I went hyper and then hoping PTU would work and not damage my liver, so I opted for surgery.

I understand your desire to keep breastfeeding too. As I told my husband and my mom, I want to have some positive hormones running through my system through all of this! — along with all the other positives for nursing. Of course, if for some medical reason, surgery is not a possibility, being a healthy mom is #1, even if it means weaning your baby. I know that we moms will fight tooth and nail to nurse when it means so much to us. I get it. If I had started to go hyper before my surgery date, I probably would have taken the PTU with the hopes of it balancing me out and then going in for surgery.

If you do go for surgery, please, please, make sure you find a surgeon who is really, really good and does a lot of thyroidectomies. I was very confident in my surgeon and very fortunate, but I know that problems can happen and it is a delicate part of the body.

[adenure]

in reply to: medication question #1173984

Hi!

I think (from talking with my endo) that it seems like doctors look at how much medicine is taken weekly as opposed to daily. I had a TT 2 months ago. I was started on 100 mcg. Synthroid. My endo. upped my meds. to 112 mcg. 2 weeks ago. He told me I could get a new prescription or take 100 mcg. Mon- Sat. and 200 mcg. on Sun. (Yikes! That sounded like too much at once to me, so I opted for the new prescription). But, I guess skipping a day or 2 is okay then? I don’t know for sure, but my endo also said that if 112 mcg. seemed to be too much, he would have me alternate 100 mcg. and 112 mcg. every other day. So, I guess what I’m saying is that you can change the dose from day to day. Not sure about going without completely…, maybe you could ask your endo. about alternating doses? Good luck! Congratulation on your baby!

[adenure]

in reply to: My Story – Graves and Life #1173964

Hi again,

I too think it’s time to get you well! If you take care of yourself, you will be able to take care of others, especially your children and family. I’m not saying that you aren’t taking care of them right now, but I know how it is to be hyper and try to take care of your family- near impossible. I know your children are older, but they still need their mom. YOU need to be well for YOU and for your family.

All of your feelings, fears, and worries are completely normal because Graves causes all of it! It is not you, it is the Graves which is either creating or at the very least, exacerbating your worries and fears about taking ATD’s or the RAI and everything else buzzing through your mind. I get it because I was there not long ago. I understand your concerns with RAI; I had the same worries. I chose surgery, but I did start with methimazole. Yes, as you can see by my signature, my liver enzymes shot up 8 times the normal amount, but I stopped the meds, everything went back to normal, and I am completely fine. As a side note, it is very unlikely to happen to you (1% of those who take ATD’s have this problem) and it can be monitored with a simple blood test. Caught early (mine was caught 7 weeks in), it reverses itself.

The betablockers are helpful, but they are just a band-aid to help us until we get treatment for our hyperthyroidism. Please reconsider accepting treatment for your Graves- primarily with ATD’s to start to get your levels balanced and under control and to help rid you of the symptoms you listed. Take the ATD’s. That will help you regain control over your body, physically, mentally, and emotionally. Then, you will be able to choose what path of treatment you want to do- whether it be to continue on ATD’s, RAI or surgery. Please don’t let this disease take over anymore of your life and the gifts you have to offer to those around you.

[adenure]

in reply to: Post RAI 8 yrs on Synthroid #1173737

Hi,

I’m 2 months post TT now and am on Synthroid (brand) only. I started at 100 mcg and was upped to 112 mcg. 2 weeks ago. I feel pretty good so far. I work out and have enough energy to take care of my boys and homeschool and do what we usually do for the most part. I’m not feeling 100% yet, but I feel pretty good. I too wondered about Naturethroid; if you take it, please let me know how it goes for you. I figure, in the end, getting our free T3 tested will be part of solving the problem. From what I understand, most people feel best with the free’s in the upper 75% range of normal. I know my free T4 is there, but haven’t had my free T3 tested. My total was just below the mid-line 6 weeks post TT. I don’t know. I guess it’s a life long journey of seeing how we feel and getting labs done. Having an endo that communicates well and works with us is important too. Well, here’s to health and energy!

[adenure]

in reply to: My Story – Graves and Life #1173959

Hi!!!

Big hug to you! I started to read, but have not finished yet. I will finish your story and respond because we are all worth listening to and we all need support . You deserve and need support (even if it be via cyberspace!). So, once my day settles down, I want to fully read your story. You are not alone in this life. Stay strong & talk to you soon!

Alexis

[adenure]

in reply to: anyone have abnormal liver enzymes with methimazole? #1173931

Hi!

Yes, I had liver problems with methimazole- I was on 5 mg. daily for 7 weeks. When I had my thyroid levels tested (which ended up being normal after treatment), my liver enzymes were 8 times the normal amount. I had a baseline before taking methimazole, and they were in range then. I was told to stop taking methimazole right away. My liver enzymes were tested 3 days later to make sure they were coming down (which they were). I had them tested again about a month later and they were normal. My dr. also ordered an abdominal ultrasound to make sure everything was okay. Fortunately, everything is fine.

I managed to stay euthyroid for 6 weeks and had my surgery to remove all of my thyroid 8 weeks ago. I am on Synthroid now and doing pretty well. My TSH came down from 6.35 (6 weeks post surgery) to .79 just last week after 1 dose adjustment. My free T4 is in the upper range of normal and I feel pretty good for the most part. I get some headaches, but I think that may be due to life with 4 little boys and homeschooling the older 3 and the youngest being 9 months old! I am grateful I was able to get a thyroidectomy bc I will never have to experience being hyper again. It depends on the person what treatment plan is the best. I tried methimazole and it just didn’t work for me bc of the liver issues. I can honestly say I feel better in many ways euthyroid after surgery than I did on methimazole, but then again, maybe the liver enzymes contributed to the off feeling while I was on the meds.

I didn’t have any symptoms of elevated enzymes like fever, sore throat, yellow skin, dark urine. It was just discovered on a liver panel. I asked for the lab as I am very sensitive to medicine. Glad I asked! My TSH dropping from 6.35 to .79 in 2 weeks with just a 12 mcg. change in dosing of Synthroid shows that too. I have some medicine allergies too, so if you are sensitive to medication in general and even if not, I would ask for the liver panel when you start ATD’s. Good luck!

Alexis

[adenure]

in reply to: Is it really Grave’s Disease? #1173830

Hi Kes!

I’m a homeschooling mom as well! I have 4 boys (almost 9 y.o., 7 y.o., 5 y.o. & an 8 month old baby I was diagnosed with Graves after my 4th was born. My endo. did antibody testing and also did an uptake scan to confirm Graves instead of postpartum thyroiditis. I was on methimazole as well (5 mg daily); my hormone levels evened out after 7 weeks, but the drug raised my liver enzymes 8 times the normal amount, so I had to stop methimazole. Six weeks later I had a total thyroidectomy. That was 8 weeks ago. Now I’m on Synthroid and working towards getting that dose right. I had a nodule, but it turned out to be benign.

I did not have exhaustion or any issues with how I felt on methimazole except the liver issues. But, I remember how miserable I was when I was hyperthyroid and could not function either. I attempted to finish our school year the best I could with a lot of help from my in laws until my hormone levels balanced out, but it was very scary and I didn’t know what was going to happen. I had terrible anxiety, panic, insomnia, shaky feeling, tremors, heart palpitations- you just can’t care for your family when you don’t feel well!!! You know that though! It is frustrating when the doctors think your symptoms have nothing to do with your hormones. My doctors believed my hyper symptoms were bc of Graves once I was diagnosed, but at first they thought I had a panic disorder or postpartum depression. I kept saying, no I didn’t. But, no one really believes us until they see for themselves that our numbers are off.

Right now, I feel much better than I did before surgery, but it still isn’t easy as I’m still not quite right with the Synthroid dose. Like with methimazole, I have to wait 6 weeks after a dose change to check my numbers, so yeah- lots of patience… fortunately, I don’t feel too badly- mostly tired more easily and get headaches, but it’s okay. We started school last Monday, so we’re on our 2nd week. I do pretty well, but I’m not 100% yet.

Do you have ranges for your lab numbers? If your T4 & T3 are lower (lower end of the range) your symptoms would make sense- feeling tired, weight gain, brain fog. I would really ask for antibody testing to check for Graves and Hashimotos/ Hashitoxicosis (which can have one swinging between hyper and hypo symptoms). It is good to know for sure on this and antibody testing is helpful. Some say a scan isn’t as necessary. If your endo. doesn’t want to test for antibodies, I would find someone who will- it will help get a grip on what is going on.

Alexis

[adenure]

in reply to: new to forum…thyroidectomy pre-op tomorow #1173836

Hey Twin!

Heehee- your story is much like mine. I was diagnosed with Graves after my 4th baby was born; he is now 8 months old. I had all the symptoms- weight loss (13 lbs in a month), tremors (although not too bad), shakiness, insomnia, anxiety, panic, fear- not good! I started methimazole 5 mg. a day for 7 weeks. It got my thyroid stable, but elevated my liver enzymes 8 times the normal amount. So, I had to stop my ATD! My endo. wanted me to do RAI as he felt it was a “no brainer”, safer, less invasive. It didn’t sit well with me though, plus I wanted to continue breastfeeding and be with my family. I also didn’t want to wait for my thyroid to die, I just wanted it done. I guess that is my personality!

So, fortunately for me, my thyroid levels stayed euthyroid the 6 weeks I waited for surgery. I had my labs done every week to be sure. I had my thyroidectomy 8 weeks ago and am very grateful I did. I had a super surgeon and have recovered very well from surgery. I am on the Synthroid dosing mystery path right now. But, that’s okay- better than the hyper path any day! I started 100 mcg 2nd day after surgery. Had labs done 6 weeks later- TSH was 6.35 (free T4 & T3 were in range though) so, I was upped to 112 mcg. 2 weeks ago. I still am not 100% me- I’m not going to lie, it’s not easy. I still feel a little “woozy” floaty/ off feeling sometimes, my sleep isn’t great, but not as bad by any stretch when I was hyper. My heart rate is in the 60s again. I’ve actually started working out a little again- biking, swimming, walking. All the panic, anxiety, tremors, shakiness are all gone- I’d say about 99%. I still worry sometimes, but I honestly think it’s from not feeling 100% yet and wondering when that will come. But, from what I hear, it will come eventually- just takes patience until the replacement hormone is dosed properly.

So, congratulations to you for making a decision to get well and going for your pre-op!!! A great step in the right direction. Things will get better, but it takes time, time, time, and so much patience. Not easy.

It sounds like you have a great surgeon; that is #1!!! I flew all the way to CT from CA to have a surgeon that my mom has worked with do my surgery. She knows him well and I just felt comfortable going with someone she knew and has worked with. He did a great job. I, like you, worried about being able to read to my boys again (we also homeschool); my big worries were my voice, breathing, and swallowing! I can do all 3 just like before- yay! My voice was weak for 3 weeks and tired easily, but it’s fine now. I only took Advil for pain. When you take your first sips and food, take your time to coordinate; I didn’t and almost choked the 1st time 😮

As far as surgery prep, I took SSKI potassium iodine drops for 7 days to shrink my thyroid and draw blood away from it (I did have to temporarily wean my baby for that time- lots of pumping and dumping!!!). After surgery, I took Tums 1000 mg 4 times a day the 1st week, 3 times a day the 2nd week and twice a day the 3rd week as a precaution for the inflamed parathyroids. My calcium levels are fine now; fortunately, my parathyroid were not damaged. My surgeon did a subcuticular stitch- about 2 and 3/4 inches. If you have any other questions, I’d be happy to help as much as I can.

Alexis

I never tried PTU as methimazole was considered the “safer” of the 2 drugs as far as the liver goes. My endo. was okay with my trying it if I wanted to, but didn’t recommend it. I wasn’t about to wait around until I went hyper again to find out if PTU was safe for me or not. One source says it’s a 50/50 chance if one raises the liver enzymes, the other will as well.

[adenure]

in reply to: Synthroid Dosage – After Radioactive Iodine Albation #1173775

Hi,

My story doesn’t quite fit along the lines of your question. I had a thyroidectomy 8 weeks ago and am on 112 mcg. of Synthroid- trying to get the dose right, doing labs every 6 weeks.

I have read though that people who have had a thyroidectomy due to cancer are often given enough hormone replacement to keep their TSH pretty low- almost around 0- to avoid having any cancer grow back. I think it’s referred to as TSH suppression. I am not a doctor and am in no way suggesting you keep your TSH that low, but I just remember reading about it quite a bit. So, I suppose that there are people out there who have their TSH suppressed very low for medical reasons through out their lives. Maybe it’s something to ask your doctor about? Just a thought. If it is a risk for osteoporosis or heart problems though, I wouldn’t risk it.

Alexis

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