[elf]

#1072857

There are 3 or so companies that make thyroid supplement, they have different brand names: Synthroid, Levoxyl, Levothroid, Unithroid – they are NOT generic, they are brand names. There is a generic, too : levothyroxine sodium. When you switch between brand names, or switch to generic, a dosage adjustment may be needed. A 100 mcg pill of one company doesn’t equal ot the amount of thyroid hormone in the 100 mcg pill of another company.

Lower energy, feeling getting worse, and falling hair – indicate that something is not right with the amount of your supplement.

[janetvj]

#1072858

I am in a very similar situation. I had blood tests and a hormone test in June 2007 at age 52 (as part of a routine physical) and my thyroid was functioning normally, and I was found to be post menopausal. In September 2007 I suddenly developed symptoms – sudden weight loss (which I didn’t mind at all), heart palpitations, shortness of breath, jittery, anxiety, tremors, rapid pulse, sleep difficulties, clammy skin, and terrible fatigue after the least bit of activity (taking a shower in the morning literally wiped me out). After a lot of tests, a blood test showed I was severely hyperthyroid, and the radioactive iodine uptake test confirmed Graves Disease. I have no family history. I had been (and still am) under a great deal of stress at work, and I think this and the hormonal changes led to my developing the disease. I was immediately put on a beta-blocker (tenorman) and after a complete physical, I was put on tapazole to "cool me down" as the endocrinologist describes it. I have stayed on the tenorman as I was already on meds for hypertension, and replaced what I had been taking with this. For a while, I felt pretty good, but my weight began creeping up almost immediately, and I now weigh over 40 pounds over my normal adult weight. My doctor has been scaling back the dosage, but nevertheless I have no energy, and no stamina. Although my levels are within the "normal" range, I am feeling very hypo. I see my doctor again this month, and plan to again discuss adjusting the dosage. He wants me to stay on the meds at least 18 to 24 months before easing off. I really do not want to have the RAI, so I am working with him to see if we can get me into remission. I am also retiring on May 1st, which I believe will greatly increase my chances of being able to heal. I think the mind-body connection cannot be ignored, and the stress of my job has really gotten to me.

So far, I have been lucky in that I have not experienced the hair loss or the eye problems, other than a little dryness.

Good luck to you, and keep us posted on your progress.

[ejcrn]

#1019613

I’m female and diagnosed with GD at age 54, roughly one year into menopause. According to all I’ve read, this is an unusual age to develop GD, especially with no prior symptoms nor family history of thyroid disorders. I was diagnosed 6/08 and my symptoms (cardiac, muscular, mental status) were quite severe. I’ve always been active and healthy and fairly sharp mentally. I received radioactive iodine 8/21/08, and became hypo fairly quickly and my physician started me on Synthroid early Nov. I stopped the beta blocker/diuretic I was on, and had also been on significant beta blocker therapy throughout the day when my heart and muscles would start going crazy. (I had one episode in the grocery store that nearly caused a 911 call…how embarrassing!) Anyhow, I started on Synthroid, then after 3 months, that was switched to a generic. I’m allowed to walk for exercise and at the last visit the doc wanted me to start some arm exercises with light weights. It almost seems like I’m slowly feeling worse instead of better. I can’t walk far without getting short of breath now. My mental status is more sluggish. I don’t believe I’m depressed, but I definitely don’t have much ambition. I’m scheduled for some labs next week, with a physician follow-up the week after. Some questions I have to anyone reading this are: 1) am I expecting to feel better too soon? 2) has anyone else had an initial diagnosis at this age? 3) does the age and status at diagnosis, such as menopausal, have an effect on recovery time? 4) has anybody had experience with T3 supplement to improve the level of wellness/recovery? 5) I’ve been hoarse with a sore throat since shoveling snow two months ago, which, of course, required excessive activity and breathing heavily in cold weather. Have seen the doctor once for this, and he felt it was a lot of sinus drainage causing the throat irritation, treated me with Allegra D, which I just finished, and there’s no change. Has anybody had any experience with this? Any suggestions? 6) Do many experience such significant hair loss that it requires wearing a wig? Shortly after I started the Synthroid, my hair literally came out by the handful in the shower. I looked up telogen effluvium per Dr.’s suggestion to help me understand, but even he was astonished at the severity of the hair loss. The loss has slowed, and I have some new fuzzies growing in. Does anyone have any suggestions on hair health? If this is a new problem for anyone, I got a lot of support by calling the local American Cancer Society to see who they recommended for help with my hair/wigs.

Well, I guess that’s quite a platter full for my first entry. I’m glad I found this site. It has helped to read some of the other questions and responses. Thank you in advance for any advice.

Oh, I’m not proofing this for spelling or typo errors…. ” title=”Smile” />

Jane

[Path]

#1072859

I was 10 years post menopausal when I developed Graves – what a surprise! I gained weight, had insomnia, fatigue and lost muscle mass and strength (jelly legs and arms) while hyper. I’ve been on tapazol for about 6 weeks now and am feeling better – more energy, less trouble sleeping, no more palpitations – but from everything I’ve read on this forum, recovery of strength takes months and gradual, slow return to exercise is important – not to overdo trying to hurry the process. I’ve also come to understand that every case is different and can vary widely. Reading the forums and doing searches on this site has been very helpful for me and hopefully for you ,too.

[lupinelady]

#1072860

Hi! I am also post menopausal- for a couple of years. I have always been healthy and active. This past fall I began having serious symptoms. By January 2009 I had lost 25 pounds, had racing heart and shortness of breath and was so tired. I finally went to the doctor. Doctor identified enlarged thyroid. After blood work, two ultrasounds, aspiration of nodule, and RAI Uptake test I was diagnosed with Grave’s Disease, which doctors suspected. I also have eye problems. The Endocrinologist wants to remove my thyroid because of atypical cells in nodule.
I am presently on Propranolol, Methimazole, Vitamin D, and a B Complex. I am trying to work with a Functional Medecine practice that includes MDs, a Naturopath as well as other practitioners. I would rather try to use a combination of medecine and natural for a period of time before deciding on thyroidectomy. If anyone has thoughts about this approach I’d appreciate feedback. My heart goes out to all suffering from this!

[DianneW]

#1072861

It’s not unusual to have an onset of Graves’ at times of hormonal change, such as after the birth of a baby, or at puberty or menopause, though it’s true that the disease develops more frequently in women in their 20’s-40’s. It’s not known why this is. Still, the disease can begin for the first time at any age. The first six months to a year, while hormone adjustments are occurring rather frequently, can be difficult for patients, and in my experience it’s the changes in levels that causes problems. Once you are on a stable dose of replacement hormone for six months to a year and longer, you’ll have a good chance to hear. Hair loss for me was always related to dose changes. It could be that hair loss in your case is a double whammy with loss of estrogen and the thyroid hormone changes. When your thyroid hormones stabilize you’ll have only one issue to deal with.

For me, taking biodentical female hormones (those that are put in a creme at a compounding pharmacy, and which are chemically identical to a woman’s own hormones) helped my hair loss and other issues, but that’s a completely different subject.

Ask your doctor to keep you on the same brand of thyroid replacement hormone. If you’re on a generic then you can’t be sure you’re on a pill made by the same company from one month to another, and it’s been shown that pills from different companies are not bio-equivalent. In other words, a 100 mcg pill from one company doesn’t produce the same TSH as a 100 mcg pill from another company. If you take the same brand name you are fairly well assured of bio-equivalence. If your doctor changes the brand of replacement hormone you’re on then you need to have another TSH test.

The current thinking in the medical world is that patients don’t need a T3 supplement if they’re on an adequate dose of thyroid replacement. I suggest that this early in your recovery especially, that probably is not going to be of help to you anyway. You may still have some thyroid function and be producing some T3 of your own. More likely you don’t feel well because your body has been through some major changes and you haven’t had time to recover. My first year following RAI was really awful, but I assure you I eventually got well. Eventually I did need to go on supplemental T3 and it helped me, but in the early days my problems were caused from fluctuations of levels and a failure of my doctor to prescribe a high enough dose of T4, not lack of T3. When your levels have been stabilized for a year or so, if you still don’t feel well, ask your endo to check your Free T3 levels. If they’re not in the normal range (mine weren’t), and your Free T4 can’t be raised, then he might be convinced to try supplementing with T3 on a trial basis to see if you feel better.

I don’t know if the age at diagnosis affects the recovery time, but since we take longer to rebound from everything as we get older, that idea almost makes sense. Ask your doctor what his experience is with older patients and let us know what he says.

I went on after my recovery to become quite active again, learning rock climbing, kayaking, and even (the year I turned 50) riding my bicycle over a major mountain pass. My diagnosis had been delayed for several years (in my early 40’s) because I’d passed off all my symptoms (fatigue, joint pain, etc.) to aging, and going to doctors wasn’t something I often did. So I want to encourage you that you will be well again, in spite of how you’re feeling now.

[DianneW]

#1072862

Hi lupinelady,

Your approach sounds wonderful. I’m only concerned about what you say are the atypical cells in your nodule. I’m sure you’ve discussed in depth the possibilities and risks if you choose not to remove the nodule. Have you discussed creative alternatives that might suit you better?

[ejcrn]

#1072863

Wow, thanks to you all for sharing your experiences, offering advice, and educating me. I wish I had found the energy to visit this site months ago, but I was too busy just managing to get by with day to day activities. Not that I’m feeling stronger, it’s great to really focus on what I can do to keep making myself feeling better. Hmmm….maybe I’ll go look for another wig! ” title=”Smile” />

Do any of you suffer from chronic hoarseness? I just can’t seem to kick that. Heck, I’m not even sure what my normal voice sounds like any more.

Besides walking, I also started a yoga class three weeks ago. I had never done any yoga and am stiff as a board with muscles weak as a kitten, especially after the wasting of my muscles while waiting for treatment. It’s not easy, but I feel it has already made a difference. And I just modify the position when my strength runs out. Since the cardiac involvement is minimal, I don’t sense any stress there like I do if I try to walk too fast or too far.

I started a new job 5 weeks ago and have to admit I was a little concerned I could handle it in case of an emergency. I’m an occupational health nurse, working as a company nurse. We had an emergency this week, and there was the response to the area of the injured employee, and after a First Responder was there to help, I had to run back to my office and run back. And the exciting thing for me is that I was able to do that without my heart going crazy! I was afraid with the adrenaline rush of the emergency, and then the physical activities involved, it would be too much stress on this whipped body. But I guess I’m getting stronger than I thought. How cool…. ” title=”Smile” /> I’m pretty worthless in the evenings, because the steady, busy day takes a lot out of me. However, it feels good to be able to do that, so I’ll take my sluggish evenings. And other than one potty break last night, I slept for 10 hours! Love, love LOVE Saturday mornings! ” title=”Smile” />

My Dr’s appt. is Tuesday, and I’m anxious to see what my labs are. I’m actually feeling better than I was a week ago, but then, we’ve had some spring like days, the sun is shining and the birds are singing. And, as we all know, I’ll feel this way until the next fluctuation from whatever cause. Bummer. At least I know each of the bad stretches also have an end. I just have to remind myself over and over at times.

[DianneW]

#1072864

Hi again ejcrn,

You might be surprised, and find that those good days are occurring more and more frequently, until one of these days you find you’ve gone an entire day without even remembering that you even have Graves’ Disease! It sounds to me like you’re doing all the right things and are well on your way.

All the best,

[Author]

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