[npatterson]

#1067904

WOW! 85 is really high for us. Mine was 49 one time, and the change in my medicine brought it back into line in about a month. It got that high because "Doctor Patterson" thought she still had some thyroid tissue, and stopped her medicine for a month. My "real" doctor just rolled his eyes!! Obviously I had no thyroid left. Good luck!

Take care,

[sutan351]

#1018932

Hi All –

I thanked my Dr. today for confirming what I felt the last 2 months. After being Hyperthyroid and having Thyroid Eye Disease the last 3 years I finally opted for RAI in April. At my last endo appt (7/29/09)- I was slipping back into a Hyper state with a TSH of .01 from .33 (All after RAI), so he held off on any medicine. Well today (9/29/09) – 2 months later my TSH had shot up to 85 (NOT .85). Needless to say my Endo said I was grossly hypothyroid and is starting me on Synthroid – which is almost a relief. I had gained 11 lbs since my last appt and knew I was experiencing a greater level of fatique which has now been validated.

My question for this group. Has anyone experienced this high level of TSH in such a short period of time? And how quickly did your body start to respond after starting on Synthroid?

Thanks for any insight!

Sandy

[bradybunch6x1]

#1067905

I ended up with a TSH of 89 after I had RAI. At that time I was told to have my levels checked every two weeks after starting on meds until my thyroid was brought back into a normal range. For me that actually came down in about two months. I can’t imagine how you can even think at this time, I remember when I got so hypo back then, I couldn’t even remember when I was signing my name were I was at in it, and would have to stop to think what came next in my name. The doctors told me they were shocked I even managed to get out of bed to go to work every morning, much less take care of my two children. Good Luck getting those numbers back to normal.
Valarie

[sutan351]

#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

[Ski]

#1067907

The type of replacement hormone you choose isn’t as important as taking it correctly and consistently, testing under similar circumstances (same time of day, same status ~ having eaten or not is irrelevant except that it should be similar circumstances each time, same with having taken your replacement pill for the day), and sticking with the initial brand you choose. They can all get your levels back to normal.

Many patients have had decompression surgery, once in the cold phase, without having an endangered optic nerve. It is a medical necessity when you need to get the eyes back into position in order to protect the cornea.

Muscle surgery is pretty common after decompression, as is lid surgery. Done correctly and in the right order (decompression first, muscles second if necessary, lids last if necessary), these surgeries have a very high success rate. It’s delicate, getting the eyes into the precise position that looks right and makes you see correctly. It’s worth going for all the surgeries you and your doctor decide are necessary in order to achieve that. It may be that you don’t need to make a decision about muscle surgery until after decompression, and the same goes for lid surgery. See how things "settle," then make a decision about what to do next.

I hope that helps!

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