[miyogirl]

in reply to: Seeing Endo tomorrow, 9/27/2013 #1181266

I was diagnosed around 1998 and have had my ups, downs, hyper, hypo, eye disease, weight gain, RAI, arthritis, etc etc etc…but things improved for me, it just took time and patience.

if your insurance and budget do not allow for therapy, consider going to a graves disease or autoimmune disease support group. It can be very helpful to know you are not alone. For me Graves’ disease had a HUGE impact on my mental health and it is very common. One book that was helpful for me in understanding the mental aspects was Ridha Arem’s book The Thyroid Solution, and also message boards and talking to my doctor.

Keep a really open dialogue with your doctor and family members on where you are at with your emotions and most importantly, be easy on yourself with your expectations and your healing. I know it’s hard, but it takes time.

I hope you feel better soon. Try not to get discouraged.

[miyogirl]

in reply to: Graves and Pregnancy #1181259

Wow. that’s kind of shocking. I never had reactions like that. I have been VERY lucky with some of the docs I have used, and the ones I wasn’t lucky with i stopped using.

I wish you the best in finding a great doc!!!

Oh and I went to my Endo today and she doesn’t think my dry mouth is RAI related like an ENT thought….. the search for answers is still on, so you can ignore my previous post about salivary issues related to RAI— although i still think it is important to discuss pros and cons and ALL possible side effects of any treatment option you choose.

Contact GDTF for doc recommendations and look in thyroid books for doc lists— and there is also the American Adacdemy of Endocrinology that has a listing as well i believe.

Best wishes to you!

[miyogirl]

in reply to: Salivary gland scarring- Dry mouth 13 yrs after RAI #1181189

Thanks. And my endo also said she hasn’t really seen Graves patients with salivary damage, just cancer RAI patients…. so the quest continues to find the cause……. Thanks for the info!!!!

[miyogirl]

in reply to: Graves and Pregnancy #1181257

Also if you are looking into RAI, find out all the side effects and facts and consider ALL of your options. Like i mentioned i wish I had considered surgery more. I am dealing with some salivary gland issues now which docs say is from RAI, but still learning about it. So, whatever route you choose/need research all of your options and the pros and cons of each.

[miyogirl]

in reply to: Graves and Pregnancy #1181256

Hi,
Everyone is different, but I have had two children post RAI.

After initial diagnosis about 13 years ago- First i tried Tapazole for a year but popped right out of remission. I didn’t want to do RAI because i fear/feared radiation, but I was VERY sick. At first diagnosis I was a mess, so I knew I needed to do something, and I knew I wanted kids in the future and I was scared I would keep popping out of remission. I contemplated surgery, and sometimes wish I had considered surgery more, but the docs recommended RAI. I waited quite a while before having kids after RAI (approx 5-6 years) and had been very stable blood levels-wise by the time we started trying. I didn’t purposely wait 5-6 years for any reason other than I wasn’t even dating my husband yet at the time. So it was 5-6 years for us to date, get married and have our first child.

We did not have fertility problems and conceived easily but my levels like I mentioned earlier were stable and my eye disease was in remission and everything had calmed down. There are great apps you can use to chart your fertility that can be helpful.

I was fortunate to have an AMAZING endo who guided me and my thryoid levels every step of the way (you have to adjust your med levels very carefully and consistently throughout the pregnancy) I also had more extensive ultrasounds than the avg person because they want to keep tabs on the baby. And more gestational diabetes tests as well. Be VERY honest and clear about your family planning goals, the more honest and clear you and your doctors are, the better the outcome for everyone involved.

Best wishes to you. I can’t recommend any “way” you should handle treatment options, because honestly everyone is completely different. Thyroid disease or not, nobody can predict the future as far as pregnancy goes.

My only recommendation– find a quality endocrinologist who you feel comfortable with, who you can trust, and who you can communicate effectively with. Find an OB who is comfy with either communicating with your endo, or at least an OB who has at least some knowledge of graves disease.
Best wishes to you!!!

[miyogirl]

in reply to: Salivary gland scarring- Dry mouth 13 yrs after RAI #1181187

Hi, thanks for your reply. I have checked with the dentist and an oral surgeon and both had no suggestions other than my teeth and gums and tongue look healthy. Did you think it might be a complication with an existing root canal or that i might need a root canal? I have never had a root canal, but my teeth are healthy as far as i know.

Thanks for your reply and help with this situation.

[miyogirl]

in reply to: Salivary gland scarring- Dry mouth 13 yrs after RAI #1181185

Thank you so much for the reply. I was beginning to feel a little crazy just not knowing why my tongue felt like this. When the doc suggested dry mouth and sugar free gum would help I was astonished that when I was especially dry or my tongue was especially irritated if I pop in a piece of gum my saliva flow increases and my tongue instantly feels much better. I couldn’t even tell it was dry mouth I was experiencing but when I described all my symptoms it seems I was kind of typical in my symptoms. I am so sorry you are going through this as well and thanks for taking the time to write.

M.

[miyogirl]

in reply to: Salivary gland scarring- Dry mouth 13 yrs after RAI #1181183

Thanks for the reply. Yeah i don’t see much mention online about salivary gland and duct damage from Graves’ RAI, but Mary Shomon does cover the potential for temporary or permanent salivary gland damage after RAI in her book “Living Well with Graves’ Disease and Hyperthyroidism” on page 340. My doctor also said she has seen it in other patients as well.

I plan on speaking to my Endocrinologist about it. So far have spoken to ENT who did some tests and noticed my parotid gland were not supplying a lot of saliva, resulting in my dry mouth.

One step at a time.
Thanks so much for your response.

[miyogirl]

in reply to: Recently Diagnosed with TED #1180963

I had TED and never used steroids. It was about 10-14 years ago. I wore glasses because my eyes didn’t align anymore and I had an astigmatism due to TED. My eyes were swollen and dry. During the day I constantly put drops in and at night I used ointments and slept with a mask on my eyes to help gently keep my eyelids over my eyes.

I can’t say not using steroids was the right decision, i just was not given the option– I was just told to moisturize moisturize moisturize and I sought out a qualified ophthalmologist to monitor my swelling.

I now don’t wear glasses – my TED calmed after a few years after my hyper/hypo was evened out to good levels. I still occasionally use moisture drops and ALWAYS make sure to wear quality sunglasses when out in bright sun. I feel like my eyes are more sensitive to light and air/drafts. But the swelling has gone down, and my 20/20 vision is back.

Best wishes to you and your health!!!

[miyogirl]

in reply to: How Did Everyone know there was something Critically wrong with their health? #1181097

When i couldn’t walk from my car to my work desk without almost passing out. I worked in a room full of employees and one day they arrived to work with me lying on my desk having trouble breathing. My co-workers all said “Something isn’t right get to a doctor!!!” I had been attributing it to stress and lack of sleep. Amazing what we can trick ourselves into thinking is “normal”

I was eating a ton (supersize big mac meals?!?!?) and not gaining a pound, but the anxiety, rapid heartbeat and eventually inability to walk a block without feeling like i was gonna pass out was what brought me to the doctor. When he got my bloodwork back he called me in shock and told me most people would have been in the hospital with my levels. I immediately, within hours of that phone call started my heart meds and Tapazole and the Graves’ journey began. That was over 14 years ago.

Since then I have tried Tapazole, which worked, but went in and instantly out of remission, did RAI, had TED, went severely hypo, gained a ton of weight, resolved my TED, did weight watchers, become euthyroid on synthroid (for the most part), had kids, lost the weight. For the most part for the past 8 years I have had a pretty ‘normal’ life health wise aside from some eye pain, fatigue, hair loss. Thinking of how awful I felt when first diagnosed and hyper and then severely hypo from RAI, i have felt good in comparison to the beginning of all of this.

Now having salivary gland issues (possibly from RAI??) but that’s new and still trying to figure all that out. Hope you feel good and find answers and a good doctor to help you navigate through all of this!!!

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