Graves Disease?

[avi123]

Avi, would you be willing to speak with me or even message privately? The stuff I'm reading online is scaring me and it would really help to be able to communicate with someone who has been through it. particularly with Graves Disease. As you can see by what I posted, that is the stuff I'm finding and I don't have anyone with experience to ask.

Sawing..that is true. There were 3 possible reasons why I was showing hyperthryoid. One was Graves, one was nodules, and one was thyroiditis. The symptom of the hyperthyroid was the same but the causes are very different and differ in "seriousness". Thryoiditis was what I was hoping the cause would be.

Reply,

I started with a Grave's Disease in 1975 at age of 46. After taking a walk uphill I started to have heart palpitation. Luckily, my friend happened to be an Endocrinologist (Harvard graduate). After doing an X-rays (at that time) and Iodine Uptake, it turned out to be a no-cancerous traditional Grave's disease. We decided to start by me taking Propylthiouracil and see the results. We controlled the dose by me doing by-weekly blood tests (finger pricks) for white blood cells counts. The idea was to avoid the destruction of those cells. After a year I saw a great improvement. No more accelerated heart rates, and no more loss of weight or excessive sweating, etc. So, it was not necessary to continue with either radioactive Iodine intake or a surgical procedure, each, to reduce the size of Thyroid gland by destruction. While doing these procedures the idea is to remove just enough tissue that the Thyroid gland becomes EuThyroid or even overshoot a bit b/c treating Hypothyroidism is easy and safer.

In 1980 (after 5 years) I was reevaluated by a specialist and was told to stop the medicine b/c it was not needed anymore, which turned out to be correct. I came down with an OSA only in 2010.

In 1980 I went back to school to acquire an M.Sc degree in Biomedical Engineering. That helped me to also understand the Grave's disease better. IMO, those kind of Thyroid problems can be treated well these days (unless found metastasized cancerous) .

[pandatx]

Thank you so much for the info. So the medication that my Endo mentioned is Methamazole. But she also said that one of the side effects could be an extreme lowering of the white blood count. What I'm hoping is that I can take it, tolerate it, and then at some point maybe go into remission. But she said that was unlikely and kept leading to the RAI which I do not want to do. As I said, I'm getting a second opinion at the end of the month. I do not understand why my endo told me that she wanted me to make a decision in 5-7 days.

My mother had a much milder Graves years ago and treated it holistically. However, her uptake scan was nowhere near what mine is and also she wasn't having as many symptoms as me.

I thank you so much for sharing. I feel like such crap right now. It is nice to "talk" to someone on the other side of this, who didn't take permanent/extreme measures. Did you ever get any of the occular issues?

Amy

[chunkyfrog]

I wonder why they said 5-7 days; not enough time for a second opinion?
Did they say why they are pressuring you to do it NOW?

[pandatx]

no....I left a message today but haven't heard back. I have questions, you know? And I'm not going to stress on the 5-7 day thing b/c what if I hadn't been able to get in to see her until the end of the month? Like my second opinion guy? I think she's concerned b/c I already have untreated osteoporosis and this is bad for your bones. And whatever treatment will take months to stabelize. I think.

[avi123]

Amy, I have changed some of the text in my first post above. Sorry that I was annoyed by the text-book nature of some of the posts.

Frankly, I have not read most of the posts.

In my last post I forgot to add that the TSH hormone secreted by the Pituitary Gland (Hypophysis) into the blood stream should be checked if not too hi. If this gland is cancerous then it's another issue, and could explain the cause of the Hyperthyroidism.

You can see that I experienced those problems long ago and as to my memory, it can't be counted on. Besides, new therapies sure have been developed. I don't know about the ocular issue. I am seen by an ophthalmologist every 6 months.

[sawinglogz]

BUT it will cause most patients to be permanently HYPOthyroid which requires lifelong treatment with a med such as synthroid -- much safer in the long run than taking tapazole/PTU longterm.

This is why I cautioned against hasty action. To the doctor, GD is cured. ("Success!") But you're the patient, irreversibly stuck with lifelong synthetic thyroid meds.

If that's OK with you, great! But for some people, that's not a great outcome, and such concerns aren't necessarily high on the doctor's priority list. Thankfully, many doctors are good about considering the long-term quality of life and/or complication issues. But some aren't, and just see the quick and easy "answer" through the lens of their specialty. And given the high-pressure tactics from your doctor, I'd suspect the latter.

I'm glad you're getting a second opinion!

[khauser]

BUT it will cause most patients to be permanently HYPOthyroid which requires lifelong treatment with a med such as synthroid -- much safer in the long run than taking tapazole/PTU longterm.

This is why I cautioned against hasty action. To the doctor, GD is cured. ("Success!") But you're the patient, irreversibly stuck with lifelong synthetic thyroid meds.

If that's OK with you, great! But for some people, that's not a great outcome, and such concerns aren't necessarily high on the doctor's priority list. Thankfully, many doctors are good about considering the long-term quality of life and/or complication issues. But some aren't, and just see the quick and easy "answer" through the lens of their specialty. And given the high-pressure tactics from your doctor, I'd suspect the latter.

I'm glad you're getting a second opinion!

I'm not so thrilled have that 'quote' attributed to me. So to clarify, the quote shown above is from a doctor that *I* quoted in my original post...

[PreemieNrsTiffy]

Is it possible your overactive thyroid is enlarged? I read that an enlarged thyroid is common in GD and there is a definite association with goiter (usually from hypothyroid) and airway obstruction with airflow limitations.

Bonnema S J. Upper airway obstruction due to goiter: An overlooked problem!

http://www.jpgmonline.com/article.asp?i ... st=Bonnema



Is it possible your OSA is exacerbated if not completely caused by the GD? This would be a great question for your endocrinologist.

[pandatx]

khauser, I love that you were researching this because you care! Hey, I was the one that found that huge list of "Don't do RAI treatment". It scared the crap out of me and who knows how much is true and how much is inflammatory. That's part of what I have to find out. I love that you have my back and are trying to help me. I'm a big girl. I double research everything myself anyway, lol.

My hope is that I can find the least invasive option that I can tolerate. I would love to try to ride it out taking only the beta blockers and doing some holistic stuff but for some reason I'm feeling myself resisting that..which is very unlike me. When I found out I had osteoporosis I flat out refused to take the meds. I worked harder at eating cleaner and started P90X for weight training. I was able to keep my numbers stable. But for some reason I don't feel the peace of mind with this about not listening to the doctors. I guess I feel, too, like I just don't have the time I had with that. I'm leaning towards trying the meds and praying I can tolerate them and then buying myself time to see if I really need to even do anything else. Maybe try the meds and also try some holistic healing in conjunction with them. At least that's what I'm thinking today.

Nothing drastic or permanent will be decided until I at least get the second opinion. No way am I making that decision in 5-7 days.

Preemie, yes definitely enlarged. I can feel it when I swallow. And pills get caught in my throat and that never used to happen. I wondered too if this could be making the apnea worse.

I'm just one big hot mess right now, aren't I?

xoxoxo

[Pugsy]

yes definitely enlarged. I can feel it when I swallow. And pills get caught in my throat and that never used to happen. I wondered too if this could be making the apnea worse.

I was wondering this also.
I know one person who had his huge thyroid removed . I don't remember what his official diagnosis was. I just know it was enlarged.
viewtopic.php?f=1&t=74924&p=687915#p687915
He still had to use the cpap machine though but he found out that it was easier and he felt enormously better.
His main deal was extreme fatigue despite decent reports but he always had a lot of hyponeas we never could get rid of.
So we wondered if the thyroid squishing the trachea may have been some of what those hyponeas were...
We were guessing but logical guesses.
I think he was so happy to get the damn thing out and feel like a decent human again that he didn't care.

[bunnyslippers]

My Mom and cousin both have Graves. Both did radiation and take the meds and have no further issues. Mom was mid thirties when she was diagnosed, she is now 65 and just got her sleep apnea diagnosis within weeks of me.
With Graves, she was a hyperactive, not sleeping mess before she was diagnosed, I was about 10 and I couldn't keep up with all of the energy Graves caused. I think she barely slept at all. She was baking cookies at 4am quite a few times or she'd have us ride bikes 20 miles to town.
She is still energetic but not the crazy level. I can't imagine her trying to adapt to CPAP back in those days.

I'd get a second opinion and if it's the same, go for the radiation. Remember that those who are successfully treated for Graves probably aren't online talking about it because it is a non-issue for them.

I hope you are able to unravel all of your medical quandaries.