[tajkoont]

in reply to: Orbital Decompression #1185046

Thank you! I appreciate your help.

[tajkoont]

in reply to: Orbital Decompression #1185044

Kimberly,

After going through and understanding all of the billing for my orbital decompression – I don’t think I can afford an out of network physician that doesn’t bill even for out of network. Is there a resource to find another great surgeon? I am seriously bummed…

Any help would be appreciated.

Thanks – Tania Osborn

[tajkoont]

in reply to: Orbital Decompression #1185043

Hi there – I am in the same boat as you. I have not scheduled as I am also waiting for more information about the outpatient center/anesthesiologist as I could have to pay two deductibles (in network and out of network). Please, please please let me know if you get any additional information.

Also – very curious to know how your surgery goes. Would love to discuss your experience.

[tajkoont]

in reply to: Going off methimazole expectations #1185493

Kimberly – could you explain more about the TSI and TRAb? I am still struggling with feeling “normal”.

Was taken off methimazole in September. By December I didn’t have any TSH detectable (T3 was 3.6 and T4 was 1.5) so he put me back on 5 mg of methimazole. When I went back early March he said my TSH was in range (1.02) but I am still having symptoms. He did not test my T3 or T4. To treat my symptoms he has me back on propranolol (which makes me crazy). My heartrate was elevated and I had a tremor. In addition, I am waking in the middle of the night sweating with my HR really scary high. This rollercoaster is really hard. My next blood test isn’t until end of April which he did order the TSH, T3 and T4.

Is this normal to still feel this was after being taken off meds and then put back on? I was feeling really good prior to be taken off.

Thank you for all of your support. I literally do not know anyone who has this disease and am thankful that I can turn to the GDATF with questions and support.

[tajkoont]

in reply to: Orbital Decompression #1185038

Hi all – I am getting ready to schedule the orbital decompression and I am scared to death – almost scared enough to not schedule it. I have never been put under before – very very scared. I am a bit hyper right now, which could be contributing to the anxiety. Was taken off methimazole briefly. Next blood test revealed no detectable TSH so I am adjusting to being back on it.

Any words of encouragement would be appreciated.

[tajkoont]

in reply to: Going off methimazole expectations #1185491

Also – was there certain things that helped or made things worse? I am really hoping to go into remission. He would not say the “R” word just yet.

[tajkoont]

in reply to: Orbital Decompression #1185034

Kimberly – How long have you been off of the methimazole? I am assuming you are in remission?

[tajkoont]

in reply to: Orbital Decompression #1185033

Thank you both. Dr. Douglas is great. I just skyped with him. He told me ultimately I will need to have the surgery. The urgency will depend on an eye pressure test. I have had high eye pressure since December. I will get another one done with an OTC to check my optic nerve and go from there. His voice was so calming that I really think the flight is worth it to CA.

I had the fast heartbeat and the palpitations for several years before being diagnosed. I only have issues now when I have PMS. Otherwise, my heart stays calm. Even with the PMS it is nothing like when I had the Graves acting up. The propranolol was wonderful to help calm all of that down. I guess going through the heart stuff for a few years just makes me nervous.

I still have my thyroid. I am on a low dose of methimolzole. Heading toward a remission – fingers crossed.

Sincerely thank you for your support. I do not know anyone other then the people on this board that can relate to this disease.

[tajkoont]

in reply to: Orbital Decompression #1185030

I wanted to update you. I have a consultation with Dr. Douglas tomorrow at 4:00. I also got to read my CT scan. It said that I had prominent fatty tissue but it was not compromising my optic nerve. Hopefully, if that is the case I can put the surgery off until next year. I feel like the constant eye change has settled down quiet a bit in the past 6-8 weeks.

I had to find pics of myself from before disease and after. How depressing! I have aged so much from this. Not sure if it is the eye changes or the weight gain from the methimazole. Luckily, I feel good.

Did you have any fear of your heart freaking out during surgery? I am sure my fear is stemming from the disease and all of the skipping beats etc from that. I have never had any surgery before and I am scared to death of having some heart freak out. My heart has done some really weird things – looking back I am sure it was the Graves setting in.

[tajkoont]

in reply to: Are You Interested in a Support Group Meeting in Austin, TX? #1184982

I really would love to attend a support group. I am in Indiana. I think my husband would as well. He needs spousal support.

Is there anything in the Midwest? I would travel as well if enough people could go. Sorry, I just saw this post.

[tajkoont]

in reply to: On Week 12 and very discouraged #1184495

That is very helpful. I am anxious to talk to the dr today. I am feeling very hyper – woke up STARVING! It is amazing how being off the meds for one week has returned nearly all symptoms. Hoping that the new dose of 10 mg will be enough and I can be on the road to recovery.

Again – I appreciate any and all encouragement. I do not personally know a single person with this ridiculous disease. Therefore, I am feeling very alone in this battle. Sometimes I think that people don’t believe this is real. It is so uncommon and not understood. Looking forward to feeling better soon!

[tajkoont]

in reply to: On Week 12 and very discouraged #1184493

I got my blood tests back and my TSH is 15 times what is supposed to be. This explains the weight. I am off the methimazole for 1 week then restart at a lower dose (10 mg). I am on day 6 of no meds and am experiencing terrible body aches and mood swings. (My poor husband!)

This is so frustrating. Hoping the yo-yo stops soon. How often do you all get blood work done? He has me going every 6 weeks.

[tajkoont]

in reply to: On Week 12 and very discouraged #1184491

Thank you both for your thoughts. Had new blood work today. Go back for results on 18th. My eyes are crossing early morning and late evening. I think being tired is what the trigger may be.

I will continue to look for a neuro ophthalmologist. I will most likely have to drive an hour to find one but I definitely don’t want this to get worse. I would say mine is moderate but not severe.

Thank you again.

[tajkoont]

in reply to: On Week 12 and very discouraged #1184488

Thank you both. I did lose a lot of weight before being diagnosed. Since being on the meds I have gained 10 pounds over my normal weight. I’m short, so that is a lot on me. To manage my aches and pains I have been running in my pool. That has helped a lot. It seems like I am starting to slowly lose weight.

I have went to 2 ophthalmologist. Both really didnt know what to do. I have put a call in to a ped strabismus dr that my daughter goes to. I was hoping he could give me a name of someone who could help treat/evaluate my eyes. My eyes are different every day. Not sure what causes them to be worse some days.

The last two days have been good days. I feel mentally charged and in a much better mood. Just last Sunday I was crying for no reason and barely had the energy to get out of bed. It’s really hard to explain these mood swings.

I get new blood work every 6 weeks. I’m pretty sure I’m swinging to hypo. I guess I just need to adjust to the new me. I’m trying to not be so hard on myself with weight/moods. I’m just so busy with work and kids and I think I need more sleep. I’ve thought about going on fmla until this levels out. I’m just afraid it could get worse.
Thanks for the advice!

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