[sutan351]

in reply to: I’m Post OD – Day 5…Pls Share your Comments #1065411

Thank You all for your kind words of support and encouragement. And to Shirley for sharing your personal story. Feeling much better today (Day …but still suffering from facial pain. I did go back to my Dr. on Monday and he thought my recovery was going well – which is what you want to hear. Btw I had a Bi-Lateral (3 Wall Decompression) forgot to mention that before. I am definitely glad to be on the other side of this surgery and knew the road to recovery would be a little slow. I suffered from a good deal of sinus pressure/headaches before this surgery, so I think that has been compounding my problem. The numbness is fading…a bit and I’m hopefull and ready to get to a more normal energy level.

I’m pleased with the results so far…and like others have said – my look is my ‘new normal’, but the bulging is far, far better than before. I would do it again! And as my husband reminded me…our looks change overall as we age, so this is just one more thing to contend with. I’ll be considering eyelid (upper/lower) in Sept and will keep you posted. I’m grateful for all the support and the ability to rest and recover!

Taking it Day by Day….

Sandy

[sutan351]

in reply to: OD surgery date set ! yee haw! #1066227

Thanks Ski – This site has been SO Helpful and I really appreciate your comments!!!!

I booked a surgery date today for 4/28/10 and feel ‘in my heart’ that it’s the RIGHT decision. It’s been a long road for me to come to this decision and I’m sure I’ll have lots of butterflies and doubts up until the surgery date. It’s a leap of faith in some way because I’ve read many of the posts -mostly positive, but some highlighting the risks of this surgery.

It’s been confusing to get such a variety of opinions from different Neuro Opthamologists that I’ve seen – 4 to be exact. I finally determined like any industry – some Drs. are more comfortable with this surgery and the one I picked has the expertise I desire. It does seem like the surgery has become more common. I feel comfortable with this Dr. and really appreciated all the before and after pics he showed. After seeing pics of my eyes on his computer screen, I said ‘WOW – I am definitely a Before’ pic! It made the need for the surgery even more evident.

Even my cousin (who is an Eye Surgeon – mostly cataracts) suggested I simply wear my glasses because it’s not that bad. My proptosis – by the way is in the 20+mm range! At the end of the day, we all have to make difficult decisions, weigh the pros and cons and move forward with what’s right for us. I’m putting these words in writing so I can reread them as I move closer to my surgery date to RECONFIRM MY DECISION!

Thanks again for your feedback…I’ll keep you posted and keep reading all the good feedback on OD from others. On a side note – I have been Hypo since Sept 09 after RAI in Apr 09 and FINALLY starting to feel stronger and more normal….just this week. My goal is to eat well, exercise and get in a good mental state prior to my surgery date.

[sutan351]

in reply to: OD surgery date set ! yee haw! #1066225

I really look forward to your comments – post OD. I am entering my 4th year of Graves/TED and deciding whether or not to proceed with OD. It will be for ‘cosmetic’ reasons (which isn’t truly just cosmetic in our case), not optic nerve issues. The risks are still swirling in my head, but my heart keeps telling me to proceed. This plus a daily look in the mirror. I know my eyes look better now that I’m in the ‘cold’ phase – as everyone tells me…..but there is still significant proptosis. The option of simply doing lid surgery seems like it would just take my lid over a still ‘popped out’ eye. Anyway this would be my first surgery. I do have double vision – but much less than a few years ago and it’s double I can live with. I hope OD doesn’t make it any worse.

Look forward to your post OD posts!

Sandy

[sutan351]

in reply to: Post RAI -In Range TSH – Still Feel Bad? #1066284

Thanks for all the comments and good suggestions. I’m realizing that my patience must continue and just because I hit an ‘in-range’ TSH – all is not right in my world.

I saw my endo today and basically he agreed to run test on t3 and free t3, but things my symptoms I’m now experiencing are unrelated to my thyroid. I don’t agree, but am not surprised by his response and am glad he’s still willing to run additional tests. I asked him about ‘Wilson’s Syndrome’ (a t4 to t3 conversion issue – best I can understand) and he said there is no such thing. Hmmmmm

Anyway, great idea on the symptom diary and I started today. My energy level has been better the past few days and I hope to continue on this good trend. I am going to my Gyno in a few weeks and will be asking about hormone replacements to take for a brief period to address some of my symptoms. The endo was in agreement that this may be a good temporary solution.

Has anyone had experience with hormone replacements and further interference with your thyroid?

[sutan351]

in reply to: Newly diagnosed, need to work out #1066321

gatorgirly,

I know how you feel and as you will soon find out Graves requires a great deal of patience and acceptance that some things have to give short -term. This is something that took me years to accept. I was dx in 2006 and my first endocrinologist told me to not work out – because of risk to my heart. I also had a racing heart – but not to the degree of your situation. I started Methimazole and a beta blocker and kept working out ….and found a new endocrinologist. I did pull back on my workouts and you will have to do this for your own health. BUT your situation may be more severe and I would highly recommend fallowing Drs. orders for the time being. Understand that your life could be at risk and no workout is worth that risk. In hindsight I was risking my health and may not do the same today. I have since gone from Hyper to Hypo after RAI last year and now have much more compassion for my body. I’ve gained 20 lbs since 2006 and at 5’2 that’s a lot of weight. But I’m fighting my way back and take each day eating healthy, working out and taking care of myself. Yoga is great for your body and can be a tremendous workout as well. Another plus on your side (if there is a plus in GD)…you’re only 25 and your body will bounce back much better with proper treatment. I was 44 at dx and hit early menopause as a result – not a pretty combination!

Best of luck to you and keep reading all the valuable info on this website!

Sandy

[sutan351]

in reply to: Armour Thyroid vs. Synthroid #1066770

Bobbi,

Thank-you so much for you very through and timely response. I feel better knowing T4 converts to T3 from Synthroid and hope when my TSH levels are back in normal range – the fatigue and weight gain will improve.

I have seen those discussions about Armour on/off for years and was surprised when I looked at a consumer affairs website yesterday, how many folks were devastated by the lack of availability. When you see that many having success with Armour that experienced difficulties with Synthroid – it makes your mind start to wander.

I should know better than to try to find a ‘quick fix’ this far into the waiting game of Graves. I’ll keep waiting for that normal range of TSH to better judge.

It’s also gettting used to a new norm for now. When I was Hyper (I know it was a dangerous health state) I felt SO much better than I do now ….and am just trying to get back to a healthy state.

Again, I appreciate you comments.

Sandy

[sutan351]

in reply to: How long did it take you to go hypo after ablation? #1067061

enough 3 – I went Hypo about 4 months after RAI in April of 09. I had a brief stint of Hyper so my Dr. kept me off any new meds. But by the time my blood was checked again my TSH was 84 (yes 84) but down to 12 at my next visit and now at 7 (target 2). I would check my blood every week or 2 if you have the means. I did gain weight – over 10 lbs during this time. My Dr. just increased my dosage this past visit – so I keep working out – eating clean and focused on good health. Best of Luck to You!

[sutan351]

in reply to: new to replacement – couple of questions #1066905

I had RAI in April and still trying to get into Normal Range. My TSH was as High as 84 down to 12 at my next Dr. visit and now at 7. My Dr. increased my dosage to 125 mcg and would like to get me closer to 2. I’m 47 and have been without a period for about 3 years. When taking Synthroid I do morning also – normally around 5a, since I invariably have to get up to pee – a lot during the night and early morning. I don’t have any kidney pain, but think I may have other issues there – unrelated to my thyroid ” title=”Smile” />

[sutan351]

in reply to: Eye Disease after years of Euthyroid #1075537

That is great to hear – because I am planning on having that surgery in March. I just went Hypo this past summer after years of Hyper, but have always had TED – now more diminished. But still lots of swelling and retraction of my lids. I did not realize that steroids were back in use. Wish I could have attended the conference.

[sutan351]

in reply to: Orbital decompression for ‘cosmetic’ reasons #1067483

I just returned from visiting another Surgeon Yesterday to discuss Orbital Decompression Surgery (which he still recommends). We discussed Fat Decompression (which is a fairly new surgery as an alternative), but he stills feels the Orbital Decompression is my best bet to address the proptosis. Again, I don’t have any Cornea Risk at this point but do have double vision and a great deal of puffiness. My question for this surgeon and for others here (if allowed to answer this about Drs.) is this….

What is a the average amount of Orbital Decompression Surgeries Performed by your Surgeon?

This Dr. I saw indicated he does a lot of orbital surgeries weekly and about 1 Decompression a month. This doesn’t seem like a lot, but then again this surgery would typically be done for those of us with Graves and TED (which is a smaller percentage). His method of OD (there are many methods out there…I have found) include the medial, lateral and orbital floor (which tends to cause the numbness – a common risk)

I’m looking into other specialists ( I know we can’t name Drs.) but if anyone would like to send a private e-mail I would appreciate your comments.

Thanks,
Sandy

[sutan351]

in reply to: Orbital decompression for ‘cosmetic’ reasons #1067478

It is confusing and what’s more confusing is the different ‘opinions/recommendations’ you will get from the Drs. I’m sure our experts will jump in with a response, but I wanted to share a few things. I was diagnoised in Fall of 2006 and waited out the hot/cold phases of Graves – I also have TED (which as we know takes a separate course and can continue to affect your eyes) long after your thyroid has been corrected. My issues started with Double Vision then the puffiness, dryness etc for years followed. I gathered a lot of information over the years, saw many drs and am now considering Orbital Decompression – for ‘rehabilitative’ reasons as well. To address a few of your ??? from my perspective.

1) After taking Methimazole for many years to address my Hyperthyroidism – My endocrinologist recommended RAI, since my blood levels were never stabalized. Before RAI (once when my eyes were pretty bad) I did a round of steriods with very little side effects, due to the short amount of time. I opted for RAI, because my Eye Surgeons suggesting ‘addressing my Thyroid’ BEFORE doing any surgeries for my eyes and this is somthing that is more of a problem for me. Before RAI (this past spring) I did a round of steroids before and after the RAI. Past studies have shown this helps to minimize any worsening of the eyes. Since RAI, my eyes have actually gotten better.

2) From everything I’ve read and been told, you can get your blood levels normal and your eyes can still do ‘their own thing’, but they typically (overtime) stabalize. Where that point is may not be ideal – but at that point surgical considerations are more ideal. I still have double vision, bulging eyes, dryness etc., but less extreme than in years past.

3)The puffiness/bags under my eyes (and above) is actually ‘fat’ compressed forward from the enlarged muscles. I have used cold compresses in the past and various cremes, but know it’s mostly fat. I do use an eye mask at night which helps with the dryness. The fat bulging is an issue for me, and I have been told lid surgery upper/lower will not get rid of this fat, that is why I am considering Fat Decompression Surgery and trying to get more information on this.

4) Depending on the type of surgery it can address your eye issues, but can cause complications as well. I saw one Neuro Op. that would not do the Orbital Decompression Surgery, because my cornea is not at risk – other Drs. more versed on the advancement of this surgery may proceed. But like any surgery there are risks involved and in my opinion you need to be in the hands of a very skilled surgeon with this surgery. My stopping point continues to be my double vision, as I don’t want this to worsen.

5)One option is to wait longer, continue to gather information and weigh your options before proceeding with any surgery. Time is your friend. Difficult as that may be.

6) You should get your eyes checked regularly for any cornea damage which can lead to more serious vision issues. I have very healthy corneas (surprisingly) even with all my vision issues.

Hope this helps. I actually go to another specialist tomorrow to followup from an appt. last year and talk more about OD> I’ll keep you posted with any updates. As a final FYI – post RAI as I stated my eyes are better, but I am hypothyroid (trying to get the meds rights on this side) and have gained 10 lbs – very frustrating, but trying to focus on my health not weight – eaiser said than done – for sure!

[sutan351]

in reply to: TSH at 85 Today – How quickly should this start to respond? #1067906

Thanks for your responses –

What’s interesting is I still some of my Thyroid left (based on the ultrasound) but ‘overall decreased in size’ – due to the RAI. I have been Hyper for so many years now.(since Fall of 2006)….knowing Hypo would likely be the next step, once I chose RAI. This was the logical step for me because my meds had to be continually adjusted AND my Eye Drs. kept saying treat your thyroid BEFORE we begin any Eye Surgeries. I know they are separate diseases, but they felt the eyes can change after RAI and wanted to have this run it’s course first.

As others have mentioned about their Endos – mine does not get rattled easily. Other than saying I was ‘grossly Hyphthyroid’ with a TSH Level at 86.13 (I rechecked my lab results), he basically said to start Levo at 35mcg for 1 week and increase to 75 mcg after week two and come back in 6 weeks. I hope this does the trick. I definitely feel sluggish and out of sorts. I feel for you Valerie having to work with small children at home during that time. I’m grateful for not working currently (kids are grown) and having time to focus on a wellness plan – yoga, exercise and clean eating. I’ve been during this for years and definitely think it’s helped to keep me centered during this time.

My questions for anyone that can share their insights…..

Has Levothyroxine (a generic for Synthyroid) worked for you?
Or does the type of drug make a huge difference?

With regard to Eye Surgeries – I Have TED – now in the Cold Phase and am left with Double Vision (looking up down and sideways) and Proptosis.

Has anyone had Orbital Decompression without having pressure on their Optic Nerves?
It seems my current Surgeon considers OD a MAJOR Surgery and will not do for cosmetic reasons (although my popped out eye balls are making me a little crazy after 3 years!). He feels he can get good results from Eyelid (Upper and Lower) Surgery. I have quite a bit of fat in both of these areas.

Has anyone gone forward with Eye Muscle Surgery – if you have reasonable vision looking straight ahead and near? Form what I’ve read on various posts we’re often left with permanent damage to the eyes that we have to live with. I don’t want to try to correct and mess up further.

Any inputs to the above questions are welcome and appreciated!
Sandy

[sutan351]

in reply to: RAI and Eye Surgeries…Decision Time #1071200

Thank-you Ski and Nancy for your very thoughtful and informative responses. I have been reading your responses on this site for many years and learn more each time. And there is MUCH to Learn!

As mentioned I was diagnoised in Oct, 2006 and have waited until recently to make a decision on RAI. During this time I went through the ‘Hot’ phases of TED and have since plateaued into a ‘Cold’ Phase. Although I still have prominent eyes, the thyroid stare and double vision (although less extreme than 1 yr ago) I decided to move ahead with RAI, because my neuro-opthamologist (who will be performing eye surgeries) suggested I treat my thyroid before moving forward with any eye surgeries. I also needed continued adjustments to my Methimazole throughout the past few yrs. My Eye Surgeon believes Orbital Decompression will really help – although I had another Dr. that suggested lowering my lids would be a better option than getting into the DO Surgery. It’s hard to know who to believe and you have to deciper and read a lot on information…which is why I love this site.

I did the RAI last week and only needed 10 mq with limited confinement after. I have been on Prednisone…40mg 1st week – tapering off each week. So far I don’t have any noticable side effects or worsening of my eyes. I go back to my Endo in a few weeks to check my blood levels. At this point I have no idea where I’m at on the Hyper/Hypo Range.

I’ll be sure to post back with an update and future questions.
Sandy

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