[emmtee]

in reply to: Request immediate response re holistic/dietary treatment #1184806

I think Kimberly is at a conference in Chicago right now (according to facebook, anyway), and since time is of the essence, I’ll go ahead and post this link to the Treatment Options page here on the GDATF website. http://gdatf.org/about/about-graves-disease/treatment-options/ It specifically mentions that there’s no natural cure or foods that will cure this disease.

[emmtee]

in reply to: Request immediate response re holistic/dietary treatment #1184805

There are definitely some autoimmune diseases that can be improved by following special diets, but I don’t believe that Graves’ is one of them. I do recall reading something about selenium supplementation, but I think it was a study done in a community where people are deficient (not a problem in the U.S.) I’ve also read something about Vitamin D deficiencies possibly contributing to the triggering of Graves’ disease, but once you develop Graves’, supplementation doesn’t cure it. (It’s a good idea to have your D tested, in any case. They will likely test yours before your surgery. I was deficient).

I’m actually acquainted with someone who has lots of food sensitivities and was unable to take methimazole. She was seeing a nutritionist, but she still needed a thyroidectomy.

[emmtee]

in reply to: New to this…need some support from others in my shoes #1184793

My eye issues have been relatively minor and have only occurred during periods in which I was hyperthyroid. In the past, I’ve just had a little bit of eyelid retraction in my right eye, but over the summer when I was hyperthyroid my eyes were sore and tearing a lot. Sometimes I’d wake up in the middle of the night (when my symptoms were worst) and I’d have tears streaming down the left side of my face. (The right side wasn’t affected very much). In the morning, my eye or eyes would be red and my eyelids swollen. After I started adjusting to a lower dose of levothyroxine, my eye problems gradually went away.

[emmtee]

in reply to: tightness in chest normal? #1184788

You mention that your BP is on the low side. Do you have a home BP monitor? I do, and it’s good for my peace of mind. I try to take my blood pressure on a regular basis and keep a log. They say it’s best to take it at the same time each day. Also, you can take your home monitor to the doctor with you and see how it compares to the BP measurements on their unit. It’s important to position your arm correctly when taking your BP to get an accurate measurement.

I’ve never felt a “tightness” in my chest, but there are times when I feel my heart racing or pounding. I felt this in the hospital the evening of my thyroidectomy, and I had the nurse check my blood pressure. It was completely normal, so I concluded that I was just extra sensitive after my surgery.

If you don’t feel you can follow your endo’s advice, you should call back and explain. Also ask what is the soonest you can have your thyroid hormones tested again. It’s possible that your dose of methimazole is too low, but you need to give it time to start working. If you retest too soon, it could delay settling on the right dose. Looking back at my list of blood tests, I see that when I was settling on my dose, I usually had them 6 weeks apart, but once I had a test after only one month. (I had a difficult case, and it took a long time to get my dose right, but my symptoms cleared up much sooner).

You might want to look into meditation as a way to handle stress. I read a whole book about it once, and it has many health benefits.

[emmtee]

in reply to: New to this…need some support from others in my shoes #1184790

Even without a thyroid, you will still have Graves’ disease because you will still have the antibodies. The same antibodies that attack the thyroid can also affect your eyes and the skin on your shins, and this can happen even after your thyroid is removed.

The symptoms of irritability and anxiousness are due to being hyperthyroid, not the antibodies, so they should go away once your thyroid hormones are in the normal range. Any time I become hyperthyroid, those symptoms come back, but once I get on the right dosage of medication, I feel much better.

You may not ever be exactly the same person that you were before you developed Graves’, but you’ll likely feel much better after your thyroidectomy. You will have some lifestyle changes, though. You’ll be completely dependent on a little pill for the rest of your life, and it needs to be taken on an empty stomach, so most people take it as soon as they wake up. There may be times when you will need to have the dosage adjusted, and you may experience either hyperthyroid or hypothyroid symptoms until you become euthyroid again. You will need to see your endocrinologist a couple of times a year and have regular blood tests. Many people experience some weight gain after their thyroidectomy, so that’s something to be aware of. If you want to avoid it, you may have to increase your activity and watch your diet.

Don’t worry too much about your thyroidectomy. Mine was much easier and less painful than I expected. I hope you will have someone to help you with your baby for a couple of weeks after the surgery. You shouldn’t strain yourself and you’ll find that you get tired very easily.

[emmtee]

in reply to: Have you found generic Synthroid to be inconsistent? #1184781

I go to CVS, and the manufacturer of my levothyroxine is Mylan. I found the name on the back side of the label, right underneath the box where it describes the tablets, and it’s in the smallest print imaginable. I almost need a magnifying glass to read it. On the prescription paperwork, the manufacturer is listed right underneath the name of the drug in the same tiny print.

I’m pretty sure that my pharmacy hasn’t changed manufacturers in the 10 months I’ve been on it, because the appearance is exactly the same. It’s pretty distinctive – a tiny oblong pill in a shade of lilac that hasn’t changed. I know that many manufacturers (including Mylan) have different colors for the different dosages. The colors seem to be chosen to match the colors that Synthroid uses. The shape and markings are completely different, though.

[emmtee]

in reply to: Blood tests before or after taking medication? #1184749

I saw my endo yesterday, and asked her this question. Your answers were right on. My endo told me that there is a little boost of hormone right after you take your levothyroxine, so it’s better to take the medication a little late rather than right before your blood test.

My Free T4 was good – right in the middle of the normal range, and my TSH was improved, but still low.

[emmtee]

in reply to: Is it all due to graves? #1184769

I think a team approach to your medical care will be good for you, since you seem to have so many symptoms that could be caused by lots of things.

I had the same thought that Kimberly did about your thyroid tests. TSH doesn’t tell the whole story. T3 isn’t always tested, but testing Free T4 is very important. If my endo had been treating me based on my TSH alone, I would have been miserably hypothyroid for most of the last five years because my TSH always remained low even when my T4 and T3 were good.

[emmtee]

in reply to: New to Grave’s Disease/Please Help #1184764

I’m so sorry you’re going through this. I wish I could reach through the internet and give you a hug. I went a little hyperthyroid over the summer, so all the symptoms are fresh in my mind. The worst thing for me was what you seem to be experiencing – a lot of anxiety and heightened emotions. Be assured that it does get better.

Some of the best advice that I got here when I was first diagnosed was to get copies of all my blood test results. Usually, doctors will just tell you that you’re high or low, but I like seeing the actual numbers so I can understand how they compare to the lab’s normal ranges. (Various labs have different ranges). I like to make spreadsheets, so I have a spreadsheet of all my labs for the last five years. I think that having copies of all my labs helps me to feel more in control and less like a victim. Also, when I ask my endo for copies, it lets her know that I want to be an active participant in my treatment.

I like Kimberly’s idea about volunteering. I used to volunteer at an animal shelter, and it was very fulfilling.

[emmtee]

in reply to: Hyperthroid with no symptoms #1184743

You should request copies of all these blood test results from your doctor. You’re legally entitled to them (assuming you live in the U.S. – I don’t know about other countries). The results from the lab will show the normal ranges, and you really need that information in order to understand what these figures mean.

I’ve never had TPO or TSI tests, but I just googled them, and apparently they have to do with Graves’ diagnosis. (Mine was diagnosed from my uptake and scan, along with having all the classic symptoms).

It’s interesting that your TSH is so consistent. I almost wonder if “.03” is the lowest that your lab measures. Mine was consistently “<0.006" for a long time, and I finally realized that the "<" meant that the actual level could be lower, but that was the lowest that the lab could measure. Without knowing your lab’s normal ranges, we can’t really know what your test results mean, but I do notice that your T4 seems to have been lowering over the past year, and your TSH increased slightly in your last test. These are both signs of improvement. One symptom that I had that you didn’t address was anxiety and heightened emotions. Other than the scary eye issues, this was the worst symptom for me. I would cry easily or get very frustrated by relatively minor things. You sound pretty upbeat in your posts, though, so I’m guessing that this isn’t an issue for you. It sounds like your weight loss was not at all “unexplained.” Good for you!

[emmtee]

in reply to: Blood tests before or after taking medication? #1184748

Thanks! So, if I had woken up in the very early morning to use the bathroom and taken it then (as I sometimes do), it would have been okay to get my blood drawn several hours later. I think it’s good that I waited yesterday, though, because I didn’t wake up until 7:30 AM and I arrived at the lab at about 10:00.

I actually had to wait an hour and 40 minutes to have my blood drawn. By the time I got home and was able to take my levothyroxine, it was nearly noon. Then I had to wait an hour to finally eat. Next time, I think I’ll make a point of setting my alarm so I can take it in the middle of the night.

I pretty much ignore my TSH and always go by my T4. In the five years since my diagnosis, I’ve only had one normal TSH, and that was a test taken 11 days after my thyroidectomy and 4 days on levothyroxine. That was my best blood test ever – TSH and T4 right in the middle of the normal range. My next test was 5 weeks later, and my T4 was at the high end of the normal range, but my TSH had dropped low again. In my last two tests, my T4 was a little high, but my TSH was too low for the lab to measure. (They only measure as low as 0.006).

(Edited to add: I wrote this just before I read Kimberly’s post. Since this was a test done to evaluate a dosage change, I’m glad I waited to take my medication. From here on out, I’ll try to test at a consistent time – and also make an appointment at the lab so I don’t have to wait so long!)

[emmtee]

in reply to: 25 weeks pregnant – flu shot??? #1184752

I’ve heard that people with Graves’ (or maybe it was all autoimmune diseases?) should avoid the nasal vaccine, but the shot is fine. I always get a flu shot. Several years ago, I had such a bad case of the flu that I never want to risk that again.

[emmtee]

in reply to: Hyperthroid with no symptoms #1184739

I was like Kimberly – long before I was diagnosed with Graves’, I was having symptoms that I (and my doctors) had attributed to other health issues. Once I got my thyroid hormone test results, everything made sense. My symptoms had come on gradually and had been going on for so long that I didn’t realize how bad I’d been feeling until after a few weeks on anti-thyroid medication when I started feeling better.

How is your blood pressure? When I was first diagnosed with hyperthyroidism (they hadn’t labeled it “Graves’ Disease” yet) and while I was waiting to get in to see the endo they had referred me to, my GP prescribed blood pressure medicine for me. I was actually on it already, but she doubled my dose. If your doctor is worried about your having a thyroid storm, maybe it would appease him if you took a small dose of BP medication while you wait for your endo appointment.

Can you get copies of all your old labs? I get my results online now, and I can see all my old tests for the last few years. I like to enter all my results into a spreadsheet, so I can see them all on one page and identify any trends. I also have a column where I log any changes in my medication dosage.

[emmtee]

in reply to: Whether to have a thyroidectomy #1184711

I didn’t have any active eye issues immediately prior to my surgery, so I don’t know about that, but I can tell you about my recovery.

I was advised that I wouldn’t be able to drive for a few days after surgery, and since I live alone, my surgeon had me stay with a family member for the first couple of nights after I left the hospital. I was told not to lift anything heavy or do anything strenuous for two weeks. My surgeon scheduled an appointment for me two weeks after surgery and also made one for me with my endo. She also had me pick up some Tums for supplemental calcium after my surgery (in case the parathyroids were damaged or stunned) and also suggested I might want some throat lozenges or chloraseptic.

I stayed one night in the hospital and was able to eat a regular meal for dinner that night. When I was discharged, I was prescribed 600 mg ibuprofen for the pain, and they only prescribed 20 tablets. Surprisingly, I had a couple left over and I didn’t need anything stronger. I only used my chloraseptic once.

I started taking my levothyroxine a week after my surgery. I think I was supposed to go home from the hospital with a prescription, but there was a miscommunication. Since T4 lasts so long in the body, it really didn’t matter. I never felt hypo.

My voice was weak and hoarse for a couple of weeks after my surgery. I think this is pretty standard. This hoarseness is caused by the breathing tube that they use during surgery. One of the risks of thyroidectomy is damage to the nerves that affect the vocal cords, but for my surgery they used a special breathing tube that has a sensor to alert the surgeon when they are close to the nerves.

My recovery was much easier than I expected. I was actually able to do a lot, but I would get tired easily. Two days after my surgery, I went on a short walk (1 mile round trip) and I had to stop and rest at my destination, but I did okay. My surgery was the week before Thanksgiving, and I was able to prepare two dishes and eat all my favorite foods, but I got tired early and left the party after dessert.

I’m not working now, but I’m sure I could have gone back to work (in an office job) after two weeks. If I’d really been needed, I might have even been able to work part time the second week. YMMV, but I think it’s safe to assume you could start a new job after two weeks off, as long as the job wasn’t too physically taxing (like moving file boxes or standing for long periods) and you didn’t need to use your voice too much (like teaching or giving presentations). You don’t need to factor in any time to adjust to your thyroid hormone replacement. You’ll start taking it before your body uses up its stores, so the transition is pretty easy.

I’ve heard a lot of different things about when you should take your thyroid hormone. One pharmacist told my mother that she should wait two hours before eating. The Synthroid website actually says to wait 1/2 to 1 hour. I think most people wait a full hour. Also, you should wait 4 hours before taking supplements because they’re more concentrated and would have more of an affect on absorption.

What seems to work for most people is to keep their medication on their nightstand along with some water, and they take it as soon as they wake up, or even in the middle of the night if they wake up to use the bathroom. Some people set an alarm, take their medication, and go back to sleep. You can actually take it at night before you go to bed, but it’s tricky because you need to take it on an empty stomach. If you routinely eat a light dinner early in the evening, this could work.

[emmtee]

in reply to: Whether to have a thyroidectomy #1184707

I was on methimazole for four years before my TT last November, so I can answer your questions about both. I had wanted a TT when I was first diagnosed, but it didn’t work out. I finally had it done because I’d developed a very large nodule that was suspicious for cancer, but ultimately found to be benign. In any case, it was pressing on my trachea, as well as growing down past my collar bone, so it needed to be removed. The benign diagnosis meant that I didn’t need to have RAI as well.

Thyroidectomy:

I guess you could consider the scar a downside, but it’s not that noticeable any more, and I consider mine to be a reminder of how lucky I am to have been through what I have and come out the other side. I did gain 10 lbs in the early months after my surgery, but my weight stabilized and I’m confident I can lose it.

Circadian rhythms cause a lot of people to feel energetic in the morning and sluggish in the afternoon. I don’t think this would be caused by Synthroid. T4 (synthetic or natural) lasts a long time in your system. (The half-life is about a week). When my endo reduced my dose this summer, she actually gave me the option of going down to the next dose or just staying on the same dose and skipping one day a week. Either way, it was the same total micrograms per week and she said it wouldn’t matter. I opted to skip a day, and I don’t feel any different on my skip day than I do on the others.

I haven’t had my bone density checked in 10 or 15 years, but it was very good back then. I get a comprehensive metabolic panel done pretty regularly due to kidney issues, and my calcium has always been good. None of my parathyroid glands were damaged in my surgery. I do take a D3 supplement because my Vitamin D levels have been low for years.

I’m 52, and other than my scar, I think my neck looks better than before the surgery because my goiter made it look thick. Of course, my skin doesn’t have the same elasticity that it did 25 years ago, but it’s definitely not sagging where my thyroid used to be. My scar is actually about 1/8″ shorter than it was originally, so I’m pleased with how the skin has tightened up.

I’m very glad I had my thyroidectomy. If I had it to do over again, I’d do it sooner, but only if I could have it done by the same surgeon. That wasn’t actually an option, as she was only hired by the hospital last summer. The surgeon I consulted with when I was first diagnosed wouldn’t do a TT on a Graves’ patient. (That’s one reason I didn’t have my TT back then).

Medication:

When I was first diagnosed with Graves’, I had a goiter on my right side. I did notice after some time (a year maybe?) on methimazole that it got a little smaller, but it never went away. It had never been that obvious to begin with, and only my endo and I noticed the change.

My first year on methimazole was like a roller coaster. It took over a year for me to get stable. (That’s the other reason I didn’t have my TT earlier). It took three tries (two increases) to find the right dose (which was pretty high – 60 mg) and then I only had one good blood test before something shifted and I suddenly became hypothyroid at that dose. My endo lowered my dose twice, but my TSH was actually getting higher. Finally I went off the methimazole completely for about 6 weeks. At that point I was hyper again and all my symptoms came back. I started back on the methimazole at a much lower dose, and after lowering it one more time, I was pretty stable for the next few years. We actually lowered it again a couple of months before my TT.

I don’t think methimazole becomes less effective over time. Your body does go through changes, though. In the process of making your thyroid overwork, Graves’ Disease antibodies do some damage to it, so you may need less methimazole as the years go on. That’s what happened with me. Also, your antibody levels can change. I never had mine tested. My diagnosis was based on my thyroid uptake and scan and the fact that I had all the symptoms – including eye involvement.

Eye Issues:

When I was first diagnosed with Graves’, I had some eyelid retraction in my right eye. It went away completely when I became euthyroid on the methimazole. During the period when I had to go off methimazole and became hyperthyroid again, my eyelid retraction came back, but when I became euthyroid again, my eye returned to normal.

My eyes were fine until this summer. Sometimes my eye would water profusely and my eyelid would become swollen and itchy. I’d wake up in the middle of the night sometimes with tears pouring down the left side of my face. Around the same time, I had a blood test that showed I was hyperthyroid. I had some issues getting an appointment with my endo, but I finally saw her last month and she lowered my dose of levothyroxine. Over the past several weeks, I’ve noticed a big improvement in my eye. It’s pretty much normal now.

I’ve still never had my antibodies tested, but I can see a clear connection between my thyroid hormone levels and my eye symptoms. As long as I can avoid being hyperthyroid, my eyes seem to be fine.

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