[JEH]

in reply to: Hyperthyroidism/Graves Disease #1183169

So glad you found this forum. It has been quite helpful for me. There is a string of posts going by several years by AzGravesGuy that details virtually day by day his experience with RAI. If you can find it, you might benefit from his “diary.”

I was diagnosed in 1998 and chose to treat with meds rather than RAI. Subsequently I went off all meds in 2006. However, have never been able to get relief from weight gain and heat sensitivity. Went back to my original endo a few months ago and he started me back on Synthroid (38.5 mcg), a very low does to avoid kicking the hyper back up again. After six weeks there was no change in my free T4, so recently he kicked it up to 75 mcg and we will check the free T4 in another 4-6 weeks.

The point I’m making is that apparently it takes what it takes for the meds to have an impact. I know it’s hard to be patient when you feel like hell. However, treating Graves is more art than science and it takes what it takes. The good news is it’s not fatal as long as your bp and heart rate remain in the normal range so your heart and circulatory system are protected (beta blocker time).

Good luck and hang in there.

[JEH]

in reply to: Frustrated & looking for answers #1183097

I was first diagnosed in my 50’s in 1998. For a variety of reasons, my doc and I decided on anti-thyroid meds, which have been fairly successful for me. Your story demonstrates why treatment of Graves is more an art than a science. It’s not the gland that is at fault, it is your immune system, which I don’t believe the medical community has figured out how to control. Therefore, I don’t believe you can count on any regime for Graves being all that stable and reliable.

I track my progress or lack thereof with my bp and heart rate. If those are stable, I am happy. That means my circulatory system is safe for the moment. For me there have always been nagging other symptoms like weight gain, heat sensitivity and constipation. I buy larger clothes, run around nearly naked and use fiber caps to help.

I’m not trying to be flippant. Right now my doc has me on a low dose Synthroid because over the years I have slipped into a hypo state. It seems to be helping my other symptoms but I will know more when my labs are read again in the next week or so. I can’t comment on the RAI because I am not a medical professional. I chose not to do it because I didn’t want to risk my eyes. (You should talk to your endo about your risk before agreeing to take that on.) What I can tell you is that my doc is a nazi when it comes to brand name drugs. During the nearly 8 years I was on anti-thyroid medication, he insisted that I use Tapazole rather than the generic you are asking about. He and I both believe there is value in the branded drug that is missing in the generic. (I have tested it myself with Lipitor and the lipid #’s are different with the BN drug vs the generic.)

I don’t believe Graves is anything to self-diagnose or self-dose. The risk to your heart is too great. Keep working with a doc that you feel confident with and best of luck to you.

[JEH]

in reply to: Hi I`m a newbie and would really appreciate some advice. #1182987

I was diagnosed with graves in 1998 and chose the thyroid meds route for a variety of reasons. I’m in the US and on Medicare which allows for pretty much whatever testing the doc decides I need. Although I was able to go off all my meds in 2006, I still have nagging symptoms although my bp and heart rate have remained normal. Most notably I have gained weight slowly since I began treatment in ’98 and still suffer from heat sensitivity. I recently went back on T4, although my TSH was within normal range, and I believe things are actually improving for me just since going back on a small dose of T4 (37.5 mcg).

That having been said, I think treating Graves is much more an art than a science. Our glands cannot function normally when under assault from our immune system, and even when they are removed, supplying hormone artificially does not match what our bodies were created to do. I have learned to be grateful for normal vital signs and minimal other symptoms, and the fact that I was able to keep my gland. Ours is an inflammatory condition and the inflammation is the culprit, not the gland. It is our immune system “attacking” our gland that is causing the problem, but if the meds don’t work for you, then there isn’t much of an alternative other than destroying the gland. Best of luck to you.

[JEH]

in reply to: First time posting #1183019

An added piece of information about lab results for T4. My recent labs had a T4 value of .8 (normal range being ~.08-2.0). My doc described me as being in a T4 “hole.” What I discovered was that age contributes to how the doc reads the T4 #. Healthy young adults should aim for their T4 to be in the upper range of normal. Elderly folks, which I am, need to be in the middle of the normal range, hence the reference to my being in a T4 hole by my doc. He now has me on a low dosage (37.5 mcg) Snythroid, to be retested in 6 wks. BTW, I have had Graves since 1998 but had been off medication since 2006. I had fallen in a hypo state with the low T4, gaining weight and experiencing nearly daily palpitations and heat intolerance. The palpitations have reduced significantly since starting the small dose of hormone and I am hopeful we can alleviate the other symptoms as well.

Welcome to this forum. It has great information.

[JEH]

in reply to: Well, here goes! #1173710

After only sleeping 4 hrs last night, I finally got up around 6 am and logged on. I read through the entire 25 pgs of your journey. I was diagnosed in 1998 and mine has been a lot less wild than yours. But I still suffer (like not sleeping last night). I was off meds for nearly 8 yrs and vital signs were stable, but weight gain, heat intolerance and sleep disturbance finally sent me back to doc earlier this month. I am hypo now and on low dose T4. Labs in 6 wks to see how this is all going.

My doc is in San Francisco and has been doing thyroids for over 40 yrs. He detected TED in me on my first visit in 1998 and advised against RAI in favor of meds. However, he said if he had Graves he would find the best thyroid cancer surgeon he could and have every bit of thyroid tissue excised. From reading your story, it sounds to me like he’s right about what is the best treatment for this condition. Congratulations.

[JEH]

in reply to: swingin from hyper to hypo! #1182932

I am decades older than you and was diagnosed with Graves in 1998. I went on anti-thyroid meds and hormone supplements that year and kept to that regimen for at least 7 yrs. I noticed almost immediately upon treatment that a substantial change happened that felt like I could be flipping over into hypo, but my doc told me to stay the course, which I did.

A new doc took me off all the meds in about 2006, and the most dangerous symptoms remained in normal range. However, I have been steadily gaining weight over the years since I began treatment and so recently I decided to return to the first doc to see what he thinks may be going on. I was middle-aged when diagnosed but now am considered elderly. So the levels of T3/T4 that I show in testing now are interpreted differently than they would have been in 1998. So I am back on a small dose of T4 in the hopes that I can dig myself out of the T4 hole I am in and perhaps lose some of this extra weight.

The point is that I doubt it is all that unusual to flip back and forth between hypo and hyper as long as your vital signs stay within normal range. I have a sister with Hashimoto’s (hypo) and she has flipped to hyper at least once. I would just get a good bp monitor so you can keep track of your bp and heart rate. I understand those to be the critical points to keep track of between doc visits. Any extremes in those readings can damage your heart over time, as I understand it, and should be reported to your doc immediately.

[JEH]

in reply to: Is there always weight gain after TT? RAI? #1182705

So I went off all my thyroid meds in 2006 at the recommendation of new endo. Heart rate and BP remained normal. No noticeable weight gain other than what had happened since GD diagnosis. Still suffer mainly from thickened waistline, heat sensitivity, mild constipation, moderate mental confusion, etc. but stopping the meds didn’t seem to make much of a difference with those symptoms. However, it has been 10 yrs since I’ve had comprehensive labs done. My endo watches me via yearly TSH. I will be in San Francisco next month and hope to get an appointment with my original endo there who did much more extensive lab workup when I was treating with him. I’ll post what happens with all that after I meet with him, if I’m able to get an appointment after all this time.

PS Do you guys all have to read your posts over to be sure they make sense? I do. Guess it’s part of the mental confusion (or else my fingers have a mind of their own).

[JEH]

in reply to: Is there always weight gain after TT? RAI? #1182703

Thank you so much Shirley. I thought TT meant thyroid treatment verses radiation or surgery. Opps. Although my endo did say if it were him he would do TT, he was great about helping me through ADT. In fact he recommended ADT due to the beginning of opthalmapthy in my right eye. He felt that radiation could cause thyroid storm which would make the eye situation worse. Really glad I followed his advice.

[JEH]

in reply to: Dual Diagnosis #1182824

I remember hearing all of my life about my paternal grandmother (who was a centenarian when she passed in 1989) having a goiter. No one ever said any more about it and obviously she had a long life even with it. But that’s probably where my GD came from. The autoimmune business comes from my mother’s family: Addisons, RA, etc. I guess it’s pretty much a mystery how all of that fits together. The good news is that it’s less of a mystery how we live with GD and protect our health. So glad there is as much knowledge as there is today about living with CD. And you guys are all a part of that knowledge base. Keep posting.

[JEH]

in reply to: Eye Floaters #1066314

I developed both floaters and peripheral light flashes several years ago. (I was diagnosed with GD in 1998 and went into remission with TT in 2006 so I don’t think there’s any connection between my floaters and dropping the meds.) The optho told me he has floaters too and said they are nothing to worry about, just the consequences of vitreous humor. They come and go for me at this point.

[JEH]

in reply to: Is there always weight gain after TT? RAI? #1182700

I am 71 and was diagnosed at 55. I am 5’9″ and weighed 148 at the time my weight loss occurred (10# in 3 months). After TT began in 1998 I immediately went up over 150 and am now near 170, even with normal activity and earting habits. I have not taken TT since 2006, but the weight gain happened even when I was on TT. When I complained the doc told me to eat a low carb diet. Since I am also bulimic, diets don’t work and set me up for binging and purging, so that suggestion was not helpful. One thing I am clear about is that I retain water since TT. I can’t even wear my wedding ring any more except occasionally when my fingers aren’t swollen. At my age my weight also shifts into my trunk from my extremities so my size 10 waist bands are too tight most of the time. I live in south FL in the winter and a mediterranean climate in the summer, so I am mostly in temps over 80F, which cause discomfort and water retention. But that was also the case when I was on TT. Going off TT hasn’t really changed much. People still refer to me as thin, even though I haven’t weighed this much since active bulimia in the 1970’s. I would just like to be back around 150 but I doubt that’s ever going to happen.

[JEH]

in reply to: Why is TSH more important then Free T3/T4? #1182642

I would get a second opinion. My Graves doc in San Francisco has been doing thyroids for 40 years. He was called in from Bethesda to consult when George HW and Barbara Bush both developed Graves when they were in the White House. He does not consider TSH to be that important in the scheme of things, relying much more on other blood work, including free T3, T4, etc. I’m should you can find someone in your area who might have a similar philosophy. Or you can contact Nathan Becker MD in SF for a referral, 415-681-0695.

[JEH]

in reply to: Dual Diagnosis #1182821

Bulletin 34 can be found here:

http://www.gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

Follow the progression of the web address above to find other patient education bulletins.

[JEH]

in reply to: Dual Diagnosis #1182820

Bulletin 343 can be found here:

http://www.gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

See the full web address above to find other patient education bulletins.

[Author]

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