[mifis]

#1018748

I was diagnosed in April 2009 with Graves disease after suddenly losing weight, awful insomnia and having massive headaches at night that were relieved by standing and an extremely rapid heart rate with breathlessness. It took a couple of months to see an endocrinologist (one offered me an appointment in September!) and when I eventually did, he prescribed methimazole at 40mg/day. My own research led me to believe this was a potentially dangerous dosage and I didn’t take it, instead I made changes to my diet (excluded wheat, dairy, caffiene) and was feeling marginally better (was also taking propranolol). I then started to experience severe edema in my legs, couldn’t even see my ankle bones and I only weighed 120 at this point, or less (stand 5′ 6"). I saw then endo again and my numbers have improved slightly but not sufficiently, so I negotiated with him to take 30mg/day. I started the meds and after a week or so, started to feel much better, much calmer, the edema in my legs started to retreat. This only lasted another week or so, then I put on 16 lbs in about 3 weeks and felt incredibly cold and sluggish and realized I had gone hypo. I reduced the meds to 20mg/day and had to wait for an appointment with the endo. When I saw him, he told me to go off the meds altogether and have blood work in 4 weeks. After the blood work I got a letter from him telling me I had started to go hyper again and to go back on the meds at 5 mg/day. My hair started falling out at the rate of a tblspn/day each morning in the shower, which was pretty depressing.

I am still on the 5 mg/day dose of the meds (have been for about 2 months altogether), although I am feeling pretty sluggish and wonder if I might have gone hypo again. I see him in 2 weeks, get the blood drawn again next week. My biggest issue apart from all the above, is that my left eye has started to protrude somewhat and is feeling rather uncomfortable and at times blurry. In general my eyesight has deteriorated, I have started to need reading glasses, although at 47 that’s not unusual. My long vision is perfect apparently. my eyes are uncomfortable though, particularly the left. Hair is not falling out anymore, thank heavens! I am feeling very heavy, have never weighed this much before and generally down in spirits. Is this kind of normal too? Have other people had this experience of being flipped from hyper to hypo and on and off the meds? It seems pretty extreme.

[mamabear]

#1066862

I have not had the up’s and down’s you have had while on a drug. There are others that can give much better advice than I can. I just wanted to say welcome and I am sorry you are feeling yucky. I wanted you to know that this group of us are here for you and ask away with questions!

[genuinruby]

#1066863

Some of us have the extra specialness to carry the antibodies for Graves and Hashimoto’s. It is a rollercoaster ride. Like you I was first diagnosed with Graves, with the usual scans aand lab tests. But found that taking the Methimazol I went to Hypo very quickly. I would go off the medication (after consulting with my doctor, of course) and within a weeks time I felt wonderful. Only to start the cycle all over again. Research the medical term – Hashitoxicosis for a little more information. Most importantly, hang in there.

Ruby in Reno

[Blessings]

#1066864

Hi. You should think about talking with a neuro-opthalmologist about your eye(s). It could be the onset of thyroid eye disease. Best wishes.

[Bobbi]

#1066865

Hi, Mifis, and welcome to our board.

It is very important that you find a doctor you can actually see if things start going wonky on you. If you have a primary care physician, they can do blood tests (in other words, you wouldn’t have to wait for the endo appointment) to see if there is any reason for current concern. It is important to stay on top of things, but trust me, we cannot tell, all by ourselves, how big or small a dose of a medication we need to be on. Because we know our own bodies we can tell that something is wrong, so we sometimes need to nag. But the judgment call about medication dosages needs to be left up to a doctor we trust, a doctor who pays attention. If you do not trust your endo, or your endo does not pay attention, please find another one. With Graves, we are in for the long haul, and we need a doctor we can work with and trust.

One thing you need to know is that weight loss, when we are hyperthyroid, is not "good" weight loss because a good percentage of it comes from loss of muscle. We especially lose from the larger muscles in the legs, arms and chest. Muscle burns more calories than other tissues in the body, even when they are not "working"/i.e. exercising. So losing muscle means that we can not eat as much as we normally would withough gaining weight. When we get to normal levels of thyroid hormone (and possibly this works even at hypo levels of thyroid hormone), the muscle starts to slowly return. This appears to us as weight gain, even if we are not gaining weight because we are eating too much. The returning muscle is "good" weight gain, because it is going to raise your metabolism, allowing you to eat more. To make a complex story short and simple, you cannot tell by the scales alone whether or not any weight you lose or gain is good weight until you have been stabilized AT normal levels of thyroid hormone for MONTHS. Also, once the muscle returns, it is not strong, healthy muscle unless we work at strengthening it. But you must, at this point, wait until your doctor tells you that it is safe to exercise, because exercising while going through what you are experiencing can be dangerous in many ways. (Remember the heart, too, is a muscle essentially, and it is adversely impacted as well.)

As mentioned to you before, it might be a good idea for you to consult with an opthamologist. If you are developing the eye disease, an endo is not the doctor who treats it, and treating the thyroid imbalance does not treat Thyroid Eye Disease (TED). Many of us develop "some" symptoms of the eye disease, and getting some symptoms does not mean that the disease will become bad. But we need to work with an opthamologist when we do have overt eye symptoms. In the meantime, if your eyes are uncomfortable, try using artificial tears. Thyroid disease can affect the quality of our tears, making them less of a lubricant for the eyes than they used to be. Our eyes dry our, and become vulnerable to corneal abrasions unless we use artificial tear drops. (Not the eye drops designed for allergies or "getting red out.")

I hope this information helps,

[Kimberly]

#1066866

mifis wrote: I am feeling very heavy, have never weighed this much before and generally down in spirits. Is this kind of normal too?

Hello – If you do a search on this site for “weight”, you will see that your concern is shared by many patients. This is a complex issue. Although re-gaining weight lost while hyperthyroid is a good thing, some of us find ourselves carrying EXTRA weight once our thyroid levels have stabilized.

Many doctors will tell us that we “just can’t eat like we did when we were hyper.” But I heard a couple of comments at this year’s GDF conference that indicate our metabolism might not be the same from what it was BEFORE we were hyper.

During a panel discussion, I asked a question about weight gain and treatment for hyperthyroidism. One of the doctors on the panel indicated that it’s possible there might be a “resetting” of one’s metabolism following thyroid issues. Also, we had an interesting presentation from a nutritionist during one of the breakout sessions. She utilizes Metabolic Testing to check the Resting Metabolic Rate (RMR) of her clients. This is the amount of calories that our bodies consume at rest to keep our heart, lungs, etc. working. She provided one example of an actual client who had been treated with RAI and stabilized on a dose of thyroid hormone replacement. There is a "standard" calculation based on weight, height, and activity level that many people use to determine RMR. However, the nutritionist found that this woman’s RMR was actually about 150 calories a day *less* than the standard. The nutritionist’s comment for patients trying to lose weight was, “you have to track EVERY calorie” – because our margin for error is so thin. (Personally, I track Weight Watchers POINTS, which is not as precise in terms of calories, but still a good tracking mechanism).

Although this was just one individual, I believe this is not an isolated case. Personally, I find that I gain weight much more quickly now, and it’s harder to get off. NOT impossible – just more challenging. I’m currently down almost 5 pounds from my high weight last October

Hopefully, you can find your "sweet spot" with the meds and get out of this hyper/hypo yo-yo cycle. That will certainly help. But the weight comes off sloooooowly, and we have to be super patient with ourselves. We also need to follow our doctor’s advice in terms of when we can start incorporating exercise back into our daily routine.

Also, as Bobbi said, it’s important to find an endo you are comfortable with…and one who will order blook work and work in an appointment for you if you just don’t FEEL right in between regular appointments. Adjusting the meds is part science, but it’s also part trial-and-error.

Best of luck!

[leepromise]

#1066867

My name is Lisa, and i was just diagnosed with graves disease about 3 months ago, and before i was diagnosed I didnt know what was wrong with me.I started swaeting at night, bad heart palpitations, my hands were shakey, I couldnt remember minor things.It took me a while before i went to the doctors I’m 46 so I thought it was maybe the start of menopause. But I took my mom for her checkup at our family’s doctors office mind you I haven’t seen him in a while, so he says to me he notices that my neck was very swollen,so i had my blood drawn and my numbers were so high I went to see my endo and she sent me for the uptake scan and she confirmed it is graves disease. Normal #s for the scan is 30 mines was 80. I had my RAI treatment a few weeks ago feeling fine my throat is shrinking just waiting to go for my b/w she said once i go into that transistion of going hypo i will be taking synthroid. has anybody taken it before and what are the side effects. hang in there.

[Bobbi]

#1066868

Hi, Lisa:

Lots of us here have had our thyroids removed, and are on replacement hormone like synthroid. I have been on it for 12 years. The replacement hormone IS thyroid hormone. It is chemically identical to our body’s own thyroxin (T4). As a result, our bodies are designed to utilize it. The only side effect issues come from taking too much of it (we become hyperthyroid again), or taking too little (we become hypothyroid).

[Author]

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