[SallyB62]

in reply to: My meds decided to stop working #1181611

Make sure your endocrinologist and eye doctor specialize in Graves disease and TED. This can make a difference in your treatment and outcomes.

The other posts are right. After med changes, it can take a while for your body to adjust. Went through it myself. It sure is frustrating to get a med change, then wait a few weeks for the body to settle down, and the doctor to tell if you are near the “sweet spot.”

Keep after your doctors, even if it means retesting eyes and all.

Hope this helps.

[SallyB62]

in reply to: Thyrotoxic Myopathy #1181514

During my super-hyper stage and after thyroidectomy, my endo’s tested my muscle strength and told me I had diminished strength. Went from about 150 to 135 lb. But, they never officially did neuromuscular testing or explained the seriousness of diminished muscle strength; or, that increasing exercise might hurt / compromise my muscles further.

After being on same synthroid dose for about 1 year, I still have not recovered muscle strength. What do doctors generally recommend for this? Are there good ‘trigger’ questions I can ask to prompt them into action or good advice?

[SallyB62]

in reply to: Thyroidectomy scheduled #1179969

Megan, I am absolutely floored by your response. You have summed up the full range of Grave’s that I wish docs, family, and patients would understand. At 51, I am still trying to express this to people. . . Get them to understand. Just because the thyroid is gone, Graves disease is never gone. We live with it, adjust to it, hopefully successfully meld it in our lives.

I wish you the best in finding out about yourself, what is Graves, what is not, the tapestry of your life.

Thank you.

[SallyB62]

in reply to: Worried thyroid removal will ruin my singing #1181585

Do you have thyroid antibodies? If so, ask doc about precautions if even considering RAI.

For my thyroidectomy, the surgeon used a special instrument that has sensors to determine the vocal nerve paths. He uses this during all thyroidectomies to reduce the possibility of nerve damage. It did not add that much in cost in relation to the total TT cost. I am not a singer, but peace of mind was priceless.

I am a Grave’s disease patient, not a doctor. Just relaying my own experience.

Hope this helps.

[SallyB62]

in reply to: Anyone on Methimazole and experience hair loss? #1181626

I had the same problem when my Grave’s went super-hyper (2010), when on methimazole (2010-2011), and at every thyroid hormone level adjustment post thyroidectomy surgery (2011-2012). Even now, after being on the same synthroid dose for about 1 year, I still go through ‘phases’ of hair loss. My doc says that I might just be very sensitive to thyroid hormone levels. Oh, well. . . .

I know that this is not a lot of advice. But, hope it helps.

[SallyB62]

in reply to: Combination Therapy T3/T4 #1181649

The other posts pretty much sum up what I would say. One extra thing. . . My endo said that anytime there is a change in thyroid meds (up or down), I could experience hair loss for a few months. I am like you in that my body wants to ‘drama’ react to meds, so my hair loss lasted about 6 – 12 months.

Hope this helps.

[SallyB62]

in reply to: Levothyroxine side effects? #1181656

I hope all is well and your doc’s figured out what is going on. Wow, you are very dedicated to take your med at 2 a.m.! Do post back and let us know how things are going.

I agree with the other posts on asking your endo about synthroid. I have been on synthroid since the start (03/2011). I consulted my endo, when the pharmacy was out of synthroid and wanted to give me a generic. The endo said that if I switched to generic, then I would have to start the blood draw series all over. Apparently, everyone’s body reacts differently to every brand of thyroid med, because of different excipient and thyroid hormone sources.

In fact, the endo said that I would have to stick with one brand of generic and insist on it at the pharmacy. Apparently, many pharmacies just fill the script with whatever generic brand is on the shelf.

Also, did you ever get the thyroid antibody tests? It took a very long time for my antibodies to subside. So, I had many of those thyroid side effects for a very long time, even after the antibodies were “negligible.”

Hope this helps. Keep after your docs until they help with your symptoms or refer you to other specialists.

[SallyB62]

in reply to: brain recovery time? #1175570

This subject resonates with me, too. All these symptoms are so familiar. I didn’t know they were related to my GD.

[SallyB62]

in reply to: missed levoxyl dose #1174525

As a fellow patient, I can only share with you my experience. Since my thyroidectomy in 03/2011, I have missed a few doses. No ill effects. You would think that I would get the hang of it already. I’ve been telling my friends that it is a good thing I was not blessed with diabetes where exact dose timing is life critical. I was also told not to double up doses for a missed dose. Hope all is well. Let us know what your doc says.

[SallyB62]

in reply to: * From Graves’ to permanent HypOthyroidism * #1174481

Be very careful! I had a General Practitioner give the same advice in 2003. He didn’t believe in thyroidectomies and that my thyroid would “just eventually burn itself out.” He was very convincing. . . convincing enough that I ignored the Endo’s advice to have a thyroidectomy.

Long-story-short, years of perplexing physical problems, eventual TED, sky high antibodies, tachycardia, near thyroid storm, etc.

Is your GP basing the dosage advice on your thyroid hormone levels or just general principle? Did your Endo explain to you (and did you understand) the reason for the dosage adjustment? Did it make sense after they showed you the test results and explained? Have you been tested for the Grave’s and Hashimoto’s antibodies? (I’d insist on this one)

Also, you can go in and out of remission after Methimazole treatments, or even after no treatment. Very frustrating, I know.

The best advice I can give is what you appear to be doing. Do your homework. Write it all down, print out articles, and take written questions to the doctor appointments. Have hardcopies of your test results so doctors can’t tap-dance around and confuse things.

I’m not a doctor. I’m just a fellow thyroid compadre.

Hope all goes well in your treatments.

[SallyB62]

in reply to: Week 3 of Methimazole–update #1174491

I remember when I was on Methimazole and going through thyroid hormone leveling out, unpredictable palpitations, eye stuff, and all the rest. Don’t miss that one bit.

Has eye doctor said you have eyelid retraction or other TED? Restasis helped me somewhat after using it for a few weeks, along with the eye gel at night, and other eye drops during the day. Have you tried the gel at night plus eye patches / covers?

I would highly recommend seeing an eye doctor that specializes in Thyroid eye problems. This would have saved me a few years of frustration. Have you been tested for the antibodies that contribute to TED? My extremely high levels explained my TED symptoms, and helped my doctor steer me away from RAI.

I’m not a doctor, and can only relate how my personal journey might coincide wity yours. So, this is not medical advice, just a thyroid disease compadre sharing.

Hope all works out well.

[SallyB62]

in reply to: Hair loss #1170404

I experienced a lot of hair loss, too. At almost 1 year post thyroidectomy, I do not notice as much scalp through my hairline. My part is not as wide.

[SallyB62]

in reply to: Please help choosing a right eye doctor. #1170397

Sorry to hear of your plight with TED. I went through that blurry / double vision for a loooong time too. Has your endocrinologist or other doctors had antibody testing done to see if your levels are getting worse? My antibodies were off the chart and blurry vision was getting really bad, so I had to get my thyroid taken out. Doctor said that as long as the thyroid was in my body and stimulating my immune response, my eyes would only get worse.

I’m not a doctor, and not trying to say that this is what is going on with you. But, I encourage you to do lots of homework on TED and discuss with both your endocrinologist and an ophthalmologist who specializes in endocrine eye disorders.

I hope things get better for you.

[SallyB62]

in reply to: looking for answers #1170098

I am a fellow patient, not a doctor; but, with the eyelid retraction, could you but your endocrinologist to order the antibody tests before your next appointment? That way, if the antibodies are high, your doctor will have more information at your next appointment.

[SallyB62]

in reply to: Graves Disease – Synthroid Dosage – Alternative Day Amounts #1169623

My doctor has mentioned skipping one to three doses per month, since going down to the next level may be too large a jump.

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