Discussions that mention synthroid

Thyroid Disorders board


Hi Meep,
Let me start with saying that I was referred over to this message board by someone on another message board which mostly deals with Graves' Disease. The member that referred me here (because there are many posts regarding thyroid cancer here) also told me that you are very knowledgeable.

I'll try to make this short and to the point. July 28, 2003 I had a near-total thyroidectomy. Dx: papillary carcinoma. I had a multi-nodular thyroid preop. Only one nodule was malignant. The malignant nodule was less than 1 cm and the doctors decided that since I am <50 and in good health (I was at that time), I would be at no higher rist for recurrence if I didn't have RAI, thus I was started on synthroid 100 mcg/day. Took that dose x 4 wks. TSH increased from 1.563 one day postop to 2.792. Free T4 was not checked one day postop, but after 4 wks. of 100 mcg, free T4 was 1.24. Unfortunately, free T3 has not been checked. My preop TSH was 1.965 on June 25. My synthroid dose was increased to 150 mcg/day on 8-22-03.

Last week I saw an endo for the first time. TSH was 0.06 and free T4 1.30. Nope, no free T3. The TSH is exactly where he wants it for thyroid suppression sion. Since I didn't have RAI, he wants what thyroid tissue remains extremely suppressed so as not to function at all in order to prevent recurrence.

So what's wrong you might ask? Well, I feel absolutely horrible. I am so exhausted, lack of concentration, and so on. I saw my PCP today (scheduled as a routine follow-up) and talked to her about how I am feeling. She ordered cbc and metabolic profile. I asked her if she ever orders free T3. Yes she does, and she went on and on about when she would order such, and that I am really not presenting with the typical hypo symptoms. Well, I asked if she would order it anyway and she did, but somewhat reluctantly. I should be able to check the results tomorrow. I also talked with her a little about cytomel. She seemed pretty reluctant to talk much about that. She told me that she has other patients come in telling her she's ordering the wrong blood tests and talking about armour and cytomel. I'm surprised she actually did order the free T3 and I don't think she would ever consider Rx armour or cytomel. She actually kind of acted a little tiffed at my request for the free T3. She didn't order the TSH and free T4 again since it was done just last week. I was afraid I'd be pushing my luck to ask for those again.

BTW, I should mention to you that I was completely asymptomatic preop. One nodule was discovered during routine physical. I was then sent to sonogram, referred to ENT, and scheduled for surgery mainly due to the fact that the sono revealed 3 solid masses 6 mm, 1.5 cm, and 3.6 cm. Therefore, the papillary carcinoma is actually an incidental finding.

I apologize for the length of this post. Maybe you can give some suggestions as to where to go from here. I just want to start feeling better (bet you've never heard that one before). Thanks meep for any input you can send my way.




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Pat
near-total thyroidectomy 7-28-03
Dx: papillary carcinoma
Well, I am blushing from the kind words. I would like to see all your results in one place to be able to make a better guess as to what is the matter, here. Once you get the Free T3, let me know and we'll dig into this. Hang in there! :)

Know that youa re not alone whn you say that you feel awful on Synthroid, adn that there may be something better for you out there. It might mean changing doctors, though, so be ready if you have to.

Post back when you get that Free T3 result.
Sorry it's getting so late. Didn't have a chance to get to the computer earlier as my dh was busy on it doing his fantasy football thing.

Anyway, Meep, here is the free T3 result from yesterday's lab work: 3.4 with a reference range of 2.3 - 4.2. (I would have never guessed it) One week earlier the TSH was 0.06 and the free T4 was 1.3. Tell me what you think. As far as I can tell, all lab values are pretty much where they're wanting them to be to keep my remaining thyroid suppressed.

I was talking with a doctor I worked with part time today about it just a little bit. He is a dermatologist, but also he is a doctor of internal medicine. He was very sympathetic it seemed. He realizes like I said that everything is great, on paper that is. He did feel that since they have me in a slightly hyperthyroid state with synthroid, that that could also be contributing to my fatigue. The two doctors I've seen recently (endo and PCP)are pretty much saying that a lot of how I'm feeling is still due to recovering from the surgery. So, I'm like well "who knows"? All I know is how hard it is to get up out of bed in the morning and get going on my day, and then how exhausted I feel from mid-day to the end of the day.

I did recently add folic acid 400 mcg and Selenium 200 mcg to my other vitamins. Maybe after a few weeks I will start to feel some effect. Does it take some time for a person to start to feel the "benefits" of thyroid replacement? The other meds and supplements I take are: a multivitamin/day, vitamin C 500 mg 2/day, vitamin E 400 IU/day, calcium 600 mg 2/day (I wait at least 4 hours to take calcium after taking synthroid), synthroid 150 mcg/day, and now just today stopped wellbutrin 150 mg 2/day and started on effexor 37.5 mg/day x 7 days, then 75 mg/day x 3 more weeks at which time I return to my PCP. If I can drag myself in there that is.

Well, I don't know what more to say tonight, as it is getting pretty late again, and I'm scheduled to work again tomorrow. I'll be so glad when tomorrow comes to an end. I'll be off until Monday. I hope to hear from anyone who has any input. Thanks. Hope you all have a great day tomorrow.


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Pat
near-total thyroidectomy 7-28-03
Dx: papillary carcinoma
It seems that your Free t4 is a bit on the low end of the normal range and your t3 is on the higher end. Your TSH is probably where it needs to be, I had a total thyroidectomy (due to cancer) and my endo wants mine TSH at or under 0.1. I'm not sure what all this means, but I'm sure someone on the board can help you (meep has helped me).

I am kind of going through the same thing you are...and I am somewhat coming to the conclusion that maybe Synthroid isn't for me. I was fine for 3 years and then all of a sudden I started going downhill, for no apparent reason. What is frustrating is the doctors insisting on synthroid and the whole "lets give it some time, and see where your levels are in 6-8 weeks." All in the meantime you are feeling terrible for 6-8 weeks.

May I ask why you are taking so much Calcium and Vitamin C, outside of your multi-vitamin? It might be possible that some of the other medications/vitamins are effecting your condition.
The calcium I take for a couple of different reasons. One is my age and being in the peri-menopaus stage, plus I don't eat a lot of dairy and feel I need the extra calcium to prevent future bone loss. Also, the ENT surgeon who did the thyroidectomy told me to take 600 mg twice a day, which I already had been doing for some time prior to my surgery. What's more, the endo told me that on the high dose of synthroid and the suppression of the thyroid, I am at higher risk for osteoporosis. The vitamin C I take basically because I'm a big fan of vitamin C to help ward off the common cold and such. Also, vitamin C enhances absorption of natural iron. I have a genetic blood disorder called beta thallassemia trait. The only issues are that I always tend to be anemic (sometimes more than other times) and I cannot take iron supplements. My hgb yesterday was 11.8 which for me is quite normal and I'm sure is not the cause of my fatigue. When first diagnosed with the thallassemia trait, my hgb was 8.5 and stayed there after one month of 325 mg ferrous sulfate twice a day (didn't know about the blood disorder then). A hematologist told me my hgb would never be normal, probably never above 10. He also said I would waste my money on vitamins. Guess I proved him wrong.

Anyway, bobv, thanks for the interest. As I said, all input is welcomed. I'm beginning to feel that this may be as good as it gets. I sure hope not. I would like to tell some of the docs "well, why don't you go have your thyroid removed, take thyroid (synthetic) replacement, then let me know how you're feeling in a few months".

I'm starting to feel like I may have missed something. The last three doctors I've seen have each asked me if I'm back to work yet. I went back to work 9 days post-op. My surgery was July 28, nearly 3 months ago. The ENT told me to expect 1 week down time from work. I wish I had taken at least 2 weeks if not 3. Oh, well, can't go back and change it now.

Also, I forgot to mention in my last post that the reason my PCP changed me from wellbutrin to effexor is for hot flashes. I'm wondering if anyone out there in the land of message boards has experience with effexor and also have thyroid issues. The paper that came with the starter pack she gave me lists conditions that effexor can make worse and thyroid problems is on the list. So I'd really like to hear from others taking effexor with either a dx of hypo, hyper, status post thyroidectomy/thyroid cancer. You get the gist.

Whew, now it's really late, for me anyway. Got to go. Goodnight to all. I'll check back tomorrow.


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Pat
near-total thyroidectomy 7-28-03
Dx: papillary carcinoma
Bobv18, I made it without a thyroid for just a little over 3 years on synthroid and then it didn't work anymore. I wonder if the 3 years is as long as your liver can conver T4 before it quits? Hmmmmm. IWL
Hi Meep,
Ok now, here's the scoop, to the best of my recollection. I always take my synthroid as soon as I get up in the morning and then an hour later I take effexor and 1 vitamin C 500 mg. The earliest I eat anything after taking the synthroid is 2 hours. Prior to yesterday (the 22nd) I was taking 1 wellbutrin 150 mg instead of the effexor, but doc switched me to the effexor and stopped the welbutrin. Ok, stay with me. Then I always wait at least 4 hours and take 1 calcium 600 mg. When I was taking wellbutrin I took my second dose at that time. After my evening meal I take my multivitamin, vitamin E 400 IU, vitamin C 500 mg, calcium 600 mg, folic acid 400 mcg, and selenium 200 mcg. I have only been taking the folic acid and selenium about a week now. All the others have been pretty long term. Just decided the folic acid and selenium might help. As far as what time I actually take the synthroid depends upon my work schedule. If I'm working that day, I get up at 5:30 and that's when I take it, therefore I don't take the calcium for about another 7 hours later. If I don't work, I'm usually up around 8:00 and take the synthroid then. I know I should take the synthroid at the same time every day, but don't want to set an alarm just to get up and take it on my days off, and don't want to wait and take it at 8:00 on the days I am up early. But for sure I always wait at least the 4 hours between synthroid and calcium. Initially I hadn't been told this, only told to take synthroid on an empty stomach. So for a while I was taking 1 calcium about an hour after synthroid. I've converted to the 4 hour time span for the past 5 weeks, maybe longer.

So, do I have you totally confused yet? Well, here's the info on the days the lab was drawn. On 10-14-03 I took my synthroid 150 mcg at 8:00 am. The lab report shows the collection time as 2:49 pm. I'm pretty sure I didn't take my calcium that day until after the doctor's appointment, so all I had taken was the synthroid and wellbutrin. The lab values were hTSH 0.06 and Free T4 1.30.

Then on 10-21-03 I took my synthroid around 9:10 am and wellbutrin 1 hour later. I then took 1 calcium and 1 wellbutrin at 1:10 right before leaving to my doctor's appointment since it had been 4 hours. That lab report doesn't show a collection time, but I would estimate that it was around 2:30 - 2:45 pm. Now the TSH and the Free T4 were not ordered that day, only the Free T3 with a result of 3.4.

The other tests ordered that day were CBC and chemistry. Most of those values were WNL except for my hgb, which is always < normal due to thallassemia trait. It was ll.8, which basically is normal for me. The other 2 CBC components that correlate with the hgb were slightly low too and RBC were slightly high, which is the norm with a lower than normal hgb.

The one other test that had an abnormal value was my BUN. It was low at 6 with a reference range of 7 - 18. Could have been caused by not eating much protein lately, or possibly having drank lots of fluids according to my lab and diagnostic tests book from nursing school.

So, anyway, my doctor hasn't contacted me at all yet with the results. She may not. Don't think she would tell me to do anything different anyway.

Meep, let me know if you have any ideas or suggestions. I'm thinking about checking out some of the internal medicine doctors in this area. My PCP is a family practice, and I really think I need to be seeing at the minimum an internal med doc. The endo in nearby city said I don't need to come back to see him. He'll just work with my PCP on synthroid dosing. I could go back, but I know he wouldn't budge on armour or cytomel. The armour web site has a feature to help locate a physician who Rx's armour. I just now checked it again, but the link is down. I checked it about a week ago, and it listed several doctors in the area, not quite local, but within an hours drive of here.

Another thing that kind of has me in a quandry is the fact that my doctors chose not to treat me with RAI. I have researched some and have found some statements that say statistically when a papillary carcinoma is <1 cm (mine was 6 mm) and the patient is <50 yrs. old and in good health (I'm 47 without any other major health issues) there is no greater risk of recurrence with or without RAI, but there is a need for continuous monitoring for recurrence. I guess what has me a little uneasy though is that I think every contact I've had through message boards of others who have had thyroid cancer have said that they had thyroidectomy and either already had RAI or scheduled to. What's your feeling on this?

Well, I've managed to turn this into a pretty long post. Hope I haven't made you regret you ever replied the first time. If you've got some ideas and/or suggestions, I'm listening. Oh, and thanks again for all your interest and kind words. Later......


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Pat
near-total thyroidectomy 7-28-03
Dx: papillary carcinoma
Pat, thanks for all the details. You are doing the right things, so that's great. And don't worry, details are GOOD. Without all the details, how can you see the big picture, right?

Anyhow, my guess is that you could lower your Synthroid just a hair and might feel better, but before you do that, give the Selenium a little more time to work. IF you really need the Selenium, your body will start using your Synthroisd more efficiently, and you'll feel a little better before long just from that.