[newbie10]

#1060701

In 2009, noticed I had a lump on right side of neck. Went to Endocrinologist found out had hyperthyroidism and lump was a goiter. Endocrinologist recommend surgery to remove right side of thyroid. Surgeon removed it and said left side looked fine so left it in. Had right side tested – no cancer. Endocrinologist was hoping that by leaving left side of thyroid in, it would slow my thyroid function down. Still was hyper, so Endo doc did more test and that is when I found out I had Graves Disease. Doctor put me on Tapazole. Remained on Tapazole for years but Endo doc said it was not good to be on Tapazole for a long period of time and recommended to have the right side of thyroid remove in 2012. I put off surgery until 2014, and remained on tapazole. in 2014, Surgeon performed a Completion Thyroidectomy. After my follow up with Surgeon, he put me on 1 daily 125 mcg tablet of Levothyroxine based on my weight. After I went back to my Endo Doctor my TSH was .13, he adjusted it to 125 mcg 1 daily for 6 days & skip taking any on 7th day. Then TSH .019, so adjusted to 88mcg 1 every day, TSH 2.54 but I wasn’t feeling well. Endo adjusted to 112 mcg 1 daily, TSH .38. Endo adjusted to 100 mcg 1 daily, TSH .35. Right now, I’m taking 100 mcg 1 tablet daily for 6 days, 7th day 50mcg. Then, I go back for blood work.

Ever since my surgery, I just don’t feel myself. I feel like a 90 year old arthritic lady. My legs and arms don’t have a lot of strength and after walking a short while my legs ache and feel so tired. I have a constant numbness in my upper left leg, tight sore muscles, a constant headache, spacey feeling, pressure in my head (feels like clogged ears but can hear ok.) fatigue (no energy), my memory is not as good as it used to be, I just feel not like myself, I feel “Off”. My anxiety has flaring up and had to get that medication adjusted. I have discussed this with my Endo Doctor and Family Doctor and have also been to a Neurologist. They tell me that until I get levothyroxine to the optimum level it can do all kind of strange things to your body.

It’s been 15 months since my surgery and to me it seems like forever since I felt myself. I’m just wondering if anybody else had similar issues like I have been feeling. That it’s not unusual:) that it’s taking so long to get my level right. I hear it from the doctors but, I want to hear from the people that actually go through it that there is light at the end of the tunnel.

Thank you

[Liz1967]

#1184210

Sounds like 88 daily was a good dose. Right now you are on 92 daily. Your TSH was good at 88. It takes at least 3 months, more likely six, to really even out. If your labs are done before you take your levothyroxine, your FT 4 will be lower. It peaks two hours after taking pill. Coffee cuts your absorption by 25%, even if taken an hour after pill. That is fine, as long as you are consistent, don’t suddenly stop or start coffee without expecting a slight change. If you are on a proton pump inhibitor, that can throw you off a bit too. I have found the TSH to be the best indicator, and I keep it between 1.5 and 2.5. Think of it like pouring water on a dry sponge. At first, a lot runs off, then it soaks in and then it suddenly overflows if you keep adding too fast and you are hyper. Give it a bit of time. I just reached my two year postop mark and I feel great. I am at 88 and have been for months now. At first, I blamed every symptom I had on Graves, ignoring the allergies and migraines, etc I had long before the thyroid issues! I had the severe eye disease which is certainly an anxiety producer. While it took some months to get adjusted, mostly my fault not being patient with the dose, I felt better immediately than I ever did on methimazole. I feel normal and if I didn’t have the eye problems, I would forget I have Graves. Hang in there. Your labs will vary slightly and this is normal, just keep the TSH below 3 and above 1 and give it some time.

[newbie10]

#1184211

Liz 1967,

Thank you for responding to my post and the encouraging words. Thank you for letting me know about getting labs done before taking levothyroxine. I never knew about that. I usually take it at 5 a.m. on weekdays before going to work, and 7 a.m. on weekends. Then, I wait 1 hr. before eating. Good point to keep in mind for future labs. I never knew when it peaks before and that coffee does that to medicine. I’m not a coffee drinker, but my mom is and she has a naturally underactive thyroid and takes the same meds. I will have to let her know. I am not on a proton pump inhibitor. Not sure what that is, but it sounds complicated.

I like your comparison to it being like pouring water on a dry sponge. That makes sense to me. Never heard it describe like that.

I tend to blame a lot of my symptoms on my thyroid. I think I do that because when I go to my family doctor or neurologist, they said wait till your thyroid levels are where they should be at because your thyroid not being at your optimum level could cause a lot of my symptoms. My Endo Doc says to me once he gets things leveled out, then if I’m still having symptoms, it’s not thyroid related. So, its very confusing and I get very frustrated. Also, it is so hard to wait the 3 months to get my blood work done. It seems like forever. I guess I’m use to having it done every 6 to 8 weeks when I was on the tapazole.

Sorry to hear about you having the severe eye disease. I’m glad after reaching your two year postop and are feeling great. It’s encouraging to me.

[Liz1967]

#1184212

Waiting is hard. Even at three months, you may have only reached the level reflected on your labs for one month as it takes 8 weeks for the labs to stabilize. Symptoms tend to lag behind labs a month or so. I found that even when my TSH was great, it may take another month, for example, for the dry skin to recover from being on the hypo side a bit. If you are a bit on the hyper side, you aren’t going to feel a great sense of calm the minute your labs hit the optimum for you. Takes a bit for things to settle but patience is hard. I did find it was easier getting it right from slightly hypo and increasing slowly than hyper and decreasing. I really think you will get there soon.

Proton pump inhibitors are things like a Prilosec and Nexium. Causes poor absorption by reducing stomach acid.

[snelsen]

#1184213

Hi newbie, I know you have felt awful for a long time. Most of what Liz has said, reflects my experience.
One (well, two) decisions I have made, and I am not saying it is “right,” and it would never be advised…
1. I don’t give much of any thought about waiting to eat or have coffee after I take my Synthroid in the morning. But I AM consistent. I do the same thing all the time. Meaning, I wait only until the coffee is made, then I am drinking it first thing in the morning.

2. I eat when I want to eat. Generally, I do not eat right away in the morning(now that I don’t have to bolt out of the house at 6am to go to work!)

My experience with other stuff.

3. The comment Liz made about taking Synthroid and labs is interesting. I read several references, and the peak effect of levothyroxine is impacted by several variables-including age, and, as she mentioned, also if you did/did not (and we should separate most supplements at least 4 hours from taking our levothyroxine. and we should separate them by at least 4 hours. I usually take whatever supplement I take later in the day at random times.

4. I have always been impatient about labs, I want them sooner rather than later. It really IS in our best interest to wait at least 8 weeks. I find this very hard to do, especially when i have decided I needed more or less hormone cause of the way I feel. I pretty much get my lab without considering much of anything except how busy the lab is. Mondays seem to be the busiest.

Although Graves’ was hard, and I was sure I was a crazy, insane person for a period of time, looking back, it was a cakewalk compared to TED..for me.

I think you are VERY CLOSE to the place and dose where you actually will be encouraged, feel good, and remind yourself of the “old you.” You really will get there. And it sure does take too long to get there. Once you are there, you might be stable for years and years. It takes way too long to get the dose just right, but it does happen. I think you are about there! Keep writing.

Here’s a reference with quite a bit of info in it, but might be worth knowing about. From the Univ of Baltimore. Re levothyroxine.

http://www.mybwmc.org/library/41/076000

[newbie10]

#1184214

Thanks for explaining how levels/labs work. I don’t believe that was ever explained to me. You make it so easy to understand.
I am so glad I posted my questions to the forum and you responded. You have given me a lot of valuable information and support. I really appreciate it.

[newbie10]

#1184215

SNelson,

Thank you for your response and encouraging words.

I have a weekly routine that works out well for taking my levothyroxine. When I first wake up at 5 a.m. I take it, then it takes about an hour until I shower and get ready for work. By the time I head downstairs for breakfast and to get my stuff ready for work, an hour has past so I can eat breakfast and then I bolt out the door at 6:20 a.m.. Boy, I’m counting down the years till I can retire

Thanks for pointing out that your age can effect the peak levels of levothyroxine and about taking Supplementals 4 hrs after taking levothyroxine. My Endo Doc & Pharmacist both told me not to take any supplementals until at least 4 hrs after. I usually take them at supper time. So that works well for me as it sounds like for you too!

Thanks for letting me know that you are also impatient about labs. I agree it is hard to wait the 12 weeks, but now after talking to Liz & you I understand better why I have to wait that long. But, I’m sure I’ll still have that twinge of impatience I’m glad I posted on the forum because I receiving such wonderful support and suggestions. I’m glad to hear that you are doing better with your Graves, but sorry to hear about your TED.

I go to get a massage once a week with someone that is a certified Myofacial Release Therapist. It helps to relieve some of my muscle tightness & aches and gets me through the week. I also go to a chiropractor. I use to go to Curves three times a week to work out but now I hardly have the energy to do much.

Sometimes it is hard to explain how you feel and why you are not up to your normal activities to someone who has never gone through what we have. They think that is all in our heads!

I still wishes I felt better sooner than later but knowing I have support and more information helps.

Thank you.

[Sara60]

#1184216

I was diagnosed with Graves over 3 years ago and also have TED symptoms. I am waiting for things to stabilize so that I can have the eye muscle surgery. I wanted to share with you some recommendations regarding the timing of medication that was helpful to me.

My endocrinologist told me that in order for the Synthroid to be most effective it must be taken on an empty stomach. I take Nexium every morning which can interfere with the Synthroid. So he told me that I should take the Synthroid at night just before bed, that way it is fully absorbed and when I get up in the morning I can go about my day without any waiting and without concern that the Nexium will interfere with the Synthroid. it is such a simple solution to the problem. I just don’t eat for two hours before I take the Synthroid.

Feel better!

[newbie10]

#1184217

Sara60,

Thank you for responding to my post. I appreciate your recommendations on when to take the medication. I have been taking my levothyroxine as soon as I wake up before I start getting ready for work that way enough time has past before I eat anything. But I’ll keep that in mind in case I ever have any issues with taking it in a.m. Right now I am getting too much of the levothyroxine so my Endo has cut it back. I don’t think I’m having a problem with fully absorbing the medication.

I hope things stabilize for you so that I can have the eye muscle surgery.

Thanks again for your response. I appreciate all the good feedback & encouraging words.

Newbie10

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