[JEH]

in reply to: Carb Intolerance #1180951

I have just had labs returned a month ago with seriously ramped up glucose. I was diagnosed with Graves in 1998 and have been on and off meds since. Went back on synthroid last August and a few months later the glucose numbers starting going up rapidly. I have read that excess thyroid hormone can cause excess glucose in the blood but don’t know if that has anything to do with me.

I have started down-sizing the carbs and uping the protein/fat and I notice that I don’t have to eat as often and my low blood sugar episodes, which I have struggled with for decades, have virtually disappeared. I will be seeing three different docs over the next couple of months and we’ll see what they have to say.

I believe there is a relationship since both diabetes and thyroid disease are metabolic but I would agree that whatever the relationship is it is complicated. I am not about to try to figure that out. I got a glucose meter and will spot check my values from time to time. I hope to be able to reverse this situation with lifestyle changes before it becomes irreverseable, hoping I can stay off meds.

Would love any insight.

Jane

[JEH]

in reply to: orbital decompression surgery #1182251

Laura, this past May I clocked a reading of 126 mg/dL for glucose. I understand that’s the upper limit of pre diabetes and most likely the lowest limit for type 2. I am astounded. I’m 5’9″ and probably weigh 165, not substantially overweight by any means. I also exercise regularly and take few meds, basically a statin and my synthroid. I have read, however, that excess thyroid hormone can cause elevated blood glucose and my numbers started climbing a few months after I reintroduced synthroid at the suggestion of my doc. I would be interested in hearing about your diabetes journey in tandem with Graves.

Thanks.

Jane

[JEH]

in reply to: Peripheral neuropathy and leg cramps #1182845

Thanks, Kimberly. I haven’t been back to the forum for awhile. I had an A1C at 6.0 in May and have been working hard to find a doc to help me with this. I finally got an appt with my primary for 7/14 and an endo here in my new location around the end of September. I will see my original endo in early August for my regular thyroid appt several hundred miles from where I live now. Between the three of them I hope to get some help–the last thing I need are complications from blood sugar problems although I hear that it is not that unusual to have the two conditions in tandem since they are both metabolic at some level.

Some of the literature I have read talks about excess thyroid hormone causing excess glucose. I started in on Synthroid again last August and almost immediately my glucose readings starting increasing. At this point I don’t know if there’s a connection or if it’s a simple coincidence.

Getting old is not for sissies.

Jane

[JEH]

in reply to: TED – treatments? #1183847

My doc advised me in 1998 that there was an outside chance that irradiating my glad could result in thyroid storm that would release a load of hormone that could exacerbate my TED. I chose instead to go with Tapazole and my eyes are essentially fine all these years later. If I were you, I would check this information out with all available resources before going the radiation route.

Jane

[JEH]

in reply to: Methimazole trigger Graves eye? #1183420

I don’t know if this helps but my endo has been very insistent that I use the branded ATD, Tapazole, rather than the generic methimazole. He has never said why but he diagnosed me with early optholmopathy when I first started treating with him in 1998. He recommended the Tapazole as the best treatment to minimize the eye problems.

I continued with the Tapazole until 2006 when I went into Graves remission and stopped all drugs. Last summer I started T4 supplementation again because the doc considered that I had become hypo.

I am sorry to hear your eyes are getting worse. Hopefully it is early enough in the inflammatory process to reverse it.

Jane

[JEH]

in reply to: How Did Everyone know there was something Critically wrong with their health? #1181128

I didn’t see anything in your post about how old you are, but I was in my 50’s when I was finally diagnosed. I had been unusually fatigued and finally decided to see a doc. A family history (a sister with Hashimotos) was the biggest clue that it could be thyroid and a blood test confirmed that it was Graves.

I had been having a variety of symptoms for several years before I was diagnosed but never put it all together. I was also infertile with seriously painful and irregular menstruation since age 12, and had a “heart murmur” when I was born in 1942. I believe my thyroid had been malfunctioning since birth, the heart murmur actually being palpitations.

The most worrisome of my symptoms was that both my bp and heart rate were seriously elevated. I was also normally a very high-energy person and the lack of energy was unusual and debilitating. I was running my own business and needed to be able to work consistently.

You story is pretty horrible. It makes my experience pale in comparison. I hope the ATD treatment works for you. It has worked well for me.

Jane

[JEH]

in reply to: ** If you have ever gone into remission, please come in ** #1182649

I was originally diagnosed in 1998 and was put on Tapazole along with supplemental T3 and T4. I don’t remember the dosages as it was so long ago. I stayed on that until around 2006 when I started treating with a new doc who suggested we try stopping all the meds to see where the gland was. I agreed and there was no discernable change to my health by stopping everything. However, from the beginning all my symptoms had not been eliminated, only the most damaging ones. I was fairly comfortable without any meds, even though I carried a bit more weight, was slightly constipated, and quite heat intolerant. Last year, at the urging of my husband, I went back to see my original doc. He diagnosed me as being hypo from the lack of meds and prescribed Synthroid at 75 mcg/day. I have been taking that since August 2014 and I believe there has been some improvement in those few remaining symptoms so I will stay on that dosage indefinitely.

Each person is so different that I doubt any one of us can be of much real help to you, but I certainly understand that hearing our stories can make a difference. I wish you the best of luck with your thyroid journey.

Jane

[JEH]

in reply to: Third relapse #1183499

I was diagnosed with Graves in 1998 and the doc noticed that I was already showing signs of the eye problem. For that reason he recommended against RAI. I went on ATD for 7 years and then into remission (no drugs). Earlier this year my husband asked me to go back to the doc to see if I could get help with my heat intolerance. (It’s slightly inconvenient for him to have me so hot and uncomfortable all the time when he’s feeling normal.) The doc diagnosed me as now hypo–even with the heat intolerance–and put me on a low dose of T4 so as not to trigger the Graves back active again. I’m not sure if it has had much effect but I will continue to take it. My eyes are fine. If I were you I would see if I couldn’t find a way to adapt to the ATD and avoid the RAI if possible. However only you can know what you are able to tolerate.

Good luck

Jane

[JEH]

in reply to: GI Issues #1183449

I was diagnosed with Graves in 1998 and almost immediately after I started ATD I began to gain weight and became seriously constipated, both symptoms of hypo. The doc told me to go on a low carb diet and eat more fiber. Very helpful (sarcasm intended)

My experience has been that I continue to have both hypo and hyper symptoms interchangeably even when my labs are normal as they are now, although the symptoms are minor when compared to how it was when I was first diagnosed. In 1998 my bp was over the top, my heart rate was 180 bpm, and the eye problem had already started. So now I only pay attention to my eyes, bp and heart rate. The rest I have accepted and adapted to. I think I would drive myself crazy if I tried to get back to the way things were before my diagnosis. After 17 yrs I have learned to accept that I have a chronic condition and to be glad it’s not fatal.

Good luck to you.

Jane

[JEH]

in reply to: GI Issues #1183448

I was diagnosed with Graves in 1998 and almost immediately after I started ATD I began to gain weight and became seriously constipated, both symptoms of hypo. The doc told me to go on a low carb diet and eat more fiber. Very helpful (sarcasm intended)

My experience has been that I continue to have both hypo and hyper symptoms interchangeably even when my labs are normal as they are now, although the symptoms are minor when compared to how it was when I was first diagnosed. In 1998 my bp was over the top, my heart rate was 180 bpm, and the eye problem had already started. So now I only pay attention to my eyes, bp and heart rate. The rest I have accepted and adapted to. I think I would drive myself crazy if I tried to get back to the way things were before my diagnosis. After 17 yrs I have learned to accept that I have a chronic condition and to be glad it’s not fatal.

Good luck to you.

Jane

[JEH]

in reply to: Is ATD a temporary method to treat Graves? #1181673

I achieved remission in 2006 after having used ATD since 1999. Then in 2014 my husband asked if I would go back to the doc because of the heat intolerance that continued for me. It created minor problems for us and he hoped the doc would have some suggestions. I had also put on some weight that I was hoping I could find a way to shed. The doc diagnosed me as now being hypo–strange with the heat intolerance–and put me back on T4 in August, starting very slowly and gradually so as not to throw me into a Graves relapse. I am stable now at 75 mcg daily and there may be some slight improvement in my weight and heat intolerance, but I don’t feel it is significant. I will continue with the T4 however for now.

My take is that we are all so different and the docs do the best they can with what they know, measure, etc. The most important thing is to protect your eyes and your heart by keeping the inflammation, bp and heart rate down.

Best of luck to you.

Jane

[JEH]

in reply to: Feeling fairly hopeless #1183287

I apologize for not visiting this site more often. I have a disabled spouse and it takes a lot of my free time. I was fortunate that Graves hit me after I had retired from the workplace and was running a business out of my home. I was able to manage my own schedule.

The workplace question is tricky in my opinion. I worked in HR in a hi-tech company for 9 years. Although I could feel sympathy for the health challenges of others, there were plenty, especially in management, who did not. My advice is to keep things as close to the vest as you can. Your health is no one’s business but yours. That’s why we have to deal with Hippa now. Your workplace cannot discriminate against you on the basis of your health, but that doesn’t mean you might not get the opportunities you might get otherwise if they think investing in your future is iffy. Productivity bars are really high these days. Use your sick days sparingly. Check out options for medical leave, paid or unpaid, so you are prepared for whatever comes.

The best of luck and use this forum. We will always sympathize.

Jane

[JEH]

in reply to: any help please! #1183298

I used ATD for 7 years, beginning in 1998. When a new doc and I decided to stop the ATD in 2005 we actually stopped everything, including thyroid supplementation. My TSH stayed within range and heart rate and bp stayed where they should be. There were still some low-level symptoms but nothing I couldn’t manage. At the urging of my spouse I returned to my original doc last summer. He determined that my T4 was too low and I have been on T4 supplementation since that time. It is now where he wants it to be so I imagine I will continue with the T4 indefinitely. Clearly I didn’t revert back to hyper when I went off ATD. I was actually hypo when I returned to the doc this past summer after being off ATD for 8 years. This stuff is really hard to compare with others. I think the docs even have a tough time understanding it all which is why they are such by-the-numbers guys. I have found this forum’s greatest benefit is to talk among ourselves about what’s happening to us. The healthy folks in our lives can’t relate. I so value all of you who post here.

Jane

[JEH]

in reply to: any help please! #1183297

I used ATD for 7 years, beginning in 1998. When a new doc and I decided to stop the ATD in 2005 we actually stopped everything, including thyroid supplementation. My TSH stayed within range and heart rate and bp stayed where they should be. There were still some low-level symptoms but nothing I couldn’t manage. At the urging of my spouse I returned to my original doc last summer. He determined that my T4 was too low and I have been on T4 supplementation since that time. It is now where he wants it to be so I imagine I will continue with the T4 indefinitely. Clearly I didn’t revert back to hyper when I went off ATD. I was actually hypo when I returned to the doc this past summer after being off ATD for 8 years. This stuff is really hard to compare with others. I think the docs even have a tough time understanding it all which is why they are such by-the-numbers guys. I have found this forum’s greatest benefit is to talk among ourselves about what’s happening to us. The healthy folks in our lives can’t relate. I so value all of you who post here.

Jane

[JEH]

in reply to: About Hyperthyroidisim #1183216

Are you aware that heart palpitations are a typical symptom of Graves Disease? I’m not doctor, but I think some people get atrial fib and heart palpitations mixed up. That’s why it’s a good idea to discuss this topic with your doc. I am in my 70’s and was told I had been born with a heart murmur. I wasn’t diagnosed with Graves until I was in my late 50’s but heart palpitations were a constant part of my life at the time I was diagnosed. The doc I have been treating with since then told me that it was his opinion that I had had thyroid disease my whole life but it wasn’t until I went through menopause that the symptoms raised to a clinical level. That makes sense based on what my mother was told when I was born. I imagine the heart murmur was actually Graves palpitations.

Jane

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