Anyone here on Synthroid?

[skinimini]

Half my thyroid was removed when I was a teenager (1970's) for benign nodules. No Synthroid then. Since that time, my thyroid has been functioning just OK--thyroid hormone levels have always been just a little low. Now I have two more fairly large nodules on the remaining lobe. They were only found because my resting HR has been wacked out lately and made a visit to the cardiologist (I have some other arrythmia type issues). Biopsy was inconclusive and my internist, general surgeon, and physician husband are recommending surgery to remove the remaining lobe. I'm pretty much resigned to the fact that it'll have to come out--it's just not a good time (is it ever for surgery?)

What has been your experience on Synthroid? I've lost a lot of weight (intentionally) in the past year and I am so terrified of messing up my metabolism. Has it been difficult to regulate? Any side effects? I've read horror stories elsewhere on the internet. Internist and surgeon downplay the regulation issues, husband (gynecologist) says it can be difficult. I guess I'm just asking for your personal experience. Thanks for sharing.

[Zen]

I'm sure you'll find a lot of us are on Synthroid.

I can't imagine what the 'horror stories' might be
I don't think it's affected me negatively at all but I have so many other things wrong with me, who knows?

With a biopsy that's inconclusive I don't think I'd be so quick to start slicing. Perhaps another doctor or another biopsy?
I can't imagine that was much fun either

[maillotpois]

I can't imagine what the 'horror stories' might be

Me either. I've been on it for over 10 years with no problems at all. Any weight fluctuations have been entirely my own fault, not the fault of the drug or my thyroid problem.

[skinimini]

I guess I overstated the "horror" stories. I've just read that lots of people have had great difficulty in regulating the thyroid replacement hormone and have had other effects--huge weight gain, arrythmia issues.

Bx was not fun, only local anesthetic. All three docs, as well as the endocrinologist told me that a thyroid biopsy doesn't always give the answer--I don't even know why they do them. At any rate, it's not an emergency, so I'll take some time (and another opinion) to try to figure out the right thing to do.

[solobiker]

I have been on it since 1989. I did not have any troubles at all until some yahoo Dr adjusted my dosage and increased a lot. I didn't notice anything for a little while but slowly I was becoming anxious, nervous and soon was not able to sleep. I would be wide awake until 3-4am and would get up a 530. I was also feeling so out of control and it was making me feel depressed. I went to a different Dr who wanted to put me on meds for depression and I told her to please look at my thyroid levels first. She did not think my symptoms had anything to do with my thyroid but tested it any way. Well my results came back revealing I was taking way too much...I think I was at .2 and she has decreased it mulitlple times and now I am at .137 I feel far better, am happy again and actually sleep.

[tctrek]

I've been on Synthroid since 1997. Unfortunately, my TSH levels won't stay stabilized, so I have to be tested every 6 weeks and get a dosage change. I have prescription bottle in everything from 200 mcg to 88 mcg! I used to think it was the root cause of my weight issues, but I don't think that anymore. I also took Armour Thyroid for a couple of months a few years ago - I was convinced I would lose weight on it. Had to take it twice a day as it has a short shelf-life. My TSH jumped all over and I didn't lose weight, so I went back to Synthroid.

But I really don't have any bad stories. I'm sure it's not the meds fault that my levels go up and down all the time.

[Zen]

I used to think it was the root cause of my weight issues, but I don't think that anymore.

For me it was cake dosage causing that problem.

[tctrek]

For me it was cake dosage causing that problem.

For me it was pizza and beer.

[maillotpois]

Wine, pizza, chocolate and beer.

[ehirsch83]

I have been on Synthroid since 2003, I had a total thyroidectamy(thyroid cancer). I have to say anytime I have gained weight on synthroid has been my own fault! Giving into sweets or that extra drink with dinner.
It didn't take long for them to regulate my dosage, they slowly increased it until we found the sweet spot. And then every 3-6 months for the first few years I had blood work done to make sure it was ok. I am now on blood work once a year and the dosage is pretty stabalized.

I will also say that I do now tend to put the weight on in my middle, as if I was older then I am. But... I am also still a size 2/4 so I can't complain to much! I just need to get motivated to do crunches on a regular basis!

So I am not sure why people say these "horror"stories. It is a synthetic hormone to replace what your body is not producing. Not sure how that could be any worse then what you have at the moment!!

[skinimini]

Thanks everyone for putting me at ease about the medications. I know thyroidectomy is a fairly common surgery and most everyone does just fine and adjusts easily to the medication. I tend to get a little overwrought with big changes. I'm still on the fence about the surgery (mainly because it's surgery). At least it's not an emergency which will give me time to really think.

[ZenSojourner]

There are a lot of horror stories regarding thyroid problems and mis-, under-, and over-medication. When un- or under-medicated, weight is a huge issue for a lot of us. My mother had a complete thyroidectomy when she was young and they put her on Armour because that's all there was. She maintained her weight just fine for many years. Then when $ynthroid the "wonder drug" came out they switched her onto it and from then on her weight spiraled out of control to the point where she was in the hospital on a measured and weighed 1000 calorie a day diet, was only eating about half of it, and was gaining a pound every single day. She had to have an intestinal bypass.

I went undiagnosed for 20 years because doctors misinterpreted blood test results. In the first place my TSH levels were moderately elevated, and in the second place, TSH levels are really a measure of pituitary function, not thyroid function, and when someone has multiple symptoms of thyroid disorder (as I did) with inconclusive or even nominally "normal" TSH levels (and a family history to boot), there are other tests that should have been run and were not. I have some form of weird tertiary (its not even secondary) hypothyroid disorder that was never going to show up as a strong positive on a TSH test (though I had several weak positives which doctors were ignoring because they thought it wasn't out of range ENOUGH).

I have been on Armour thyroid for about 10 years now and when I can get it (sometimes I can't because of my financial situation and lack of insurance and access to doctors) it regulates my condition very well, but it took almost a year for things to stabilize.

Even if you need Armour as opposed to Synthroid (I do because I need both T3 and T4 because of binding issues and failures in the conversion process) you will not lose weight on it by magic. Without the Armour I gain weight uncontrollably: unless I literally go on a starvation diet I WILL gain weight.

On the proper, stabilized dosage, the weight gain stops, but I have to work harder than "normal" people to lose the weight. Figure I was running (not jogging) 2.5 miles a day and eating 1200 calories a day just to maintain at 20 pounds overweight when I was younger (and unmedicated); now if I bike 250 to 300 miles per week I can maintain at "just" 60 lbs overweight on stabilized meds. Without the meds my weight will shoot up to 100 lbs overweight on the same diet and the same level of exercise. So being properly medicated doesn't mean you'll start losing weight spontaneously, but you should stop unwarranted weight gain (by that I mean you're not downing a gallon of Mountain Dew and a family size bag of chips just for a snack) and weight loss becomes at least possible, if still difficult.

There are some people that Synthroid just won't work for, and we usually have a devil of a time finding that out because doctors have been brainwashed into thinking man-made is better than natural. Well sometimes it is better for a few people, and it's "as good" or "good enough" for a bunch more, but it doesn't work for everybody. Same is true of Armour; it doesn't work for everybody. The original poster indicated some heart problems, and that's a prime reason NOT to give Armour because of the effect too much T3 can have on heart function (though too much T4 can do the same thing for people who's T4 to T3 conversion processes are working properly).

Sometimes the doctors will "trial" us on synthroid for 6 to 8 weeks, and if there isn't immediate improvement they don't consider that possibly it's the wrong medication, the wrong dosage, or both, they'll just tell you you're imagining things. It's backwards thinking: short term treatment with this med didn't work therefore you're not sick, as opposed to this med wasn't appropriate for you, let's try an alternative treatment. Also people who are long-term untreated as I was take a lot longer to stabilize because there is so much more wrong by that point than just your thyroid hormone levels (I flunked an adrenal stimulation test and had to take a small dose of cortisol, gradually tapered off over a 3 year period).

People with Hashimoto's syndrome (google it if you're curious) have a hard time stabilizing on ANY form of thyroid meds. And Hashi's is rarely tested for unless the patient finds out about it and asks for the proper tests (patient better know what the proper tests are too because most docs don't)

So yes, there are "horror stories" out there for people who are put on synthetic thyroid hormone when it isn't appropriate for them. If you can't metabolize the drug; if you have absorption issues related to fillers; if you have binding problems or conversion problems; or if you have any other problem specifically related to levels of T3, the synthetic version isn't going to help you, no matter how thoroughly convinced people are that it's the "same thing only better". It isn't the same thing, and it isn't "better". It's just different.

Can you guess that's a sore topic for me? LOL! I SUFFERED for over 20 years while doctors told me there was nothing wrong with me when there clearly was (I spent 12 years of that AVOIDING doctors because I was tired of being blamed for my health problems). Still tingles a bit. LOL!

[Triskeliongirl]

I have hashimotos and have been on thyroid replacement for many years. I could not lose weight until I found the correct dosage, and for me I needed combo therapy, I take both T4 and T3. But with a knowledgable endocrinologist monitoring you its not that hard. For me, I would only gain weight if I were being under-treated, which for me meant not getting enough T3. When my endo replaced some of my T4 with T3 everything fell into place.

I cannot imagine living without my medication so I don't think you need to be afraid. You will only feel better.

To clarify the previous post, I agree that many of us need combo therapy, and that while armour is one way to get both T4 and T3, you should know that you can also take synthetic versions of both T4 and T3 (the T4 I take is called synthroid and the T3 is called cytomel). What is nice about the synthetics, is that you can titrate the dosages of each hormone separately, and end up with very consistent dosing.

[tctrek]

I should mention that after 12 years of hypothyroidism and taking Synthroid, I started riding a bike and taking spinning classes to lose weight and gain fitness. I was 60 pounds overweight and miserable. My TSH was 43 and I was taking Synthroid!!! That was 2 years ago. Since then I have lost 40 pounds. My weight loss has slowed down, but my fitness level is going up and I am losing inches.

And.. here's the cool part.. my TSH levels are improving. My Synthroid dosage has reduced from 200 mcg, to 150 mch, to 137, 125, 100.. and now I am on 88 mcg! Although, the doctor can't explain it, I am convinced that my increased fitness levels are somehow responsible for this improvement.

I also had high cholesterol and triglycerides and now have perfectly normal levels without any medication. I also had high blood pressure requiring 3 different meds and am now down to one mild dosage of pb meds.

I'm a firm believer that eating fresh foods and getting lots of exercise can turn around health problems. Keep on riding!!

[Triskeliongirl]

FYI, you do expect your absolute snythyroid dosage to go down as you lose weight, not because of increased fitness, but becasue dosage is really per unit of body weight. My dosage also went down as I lost weight, but only proportional to my weight loss (although it sounds like yours went down more than that).