[cathycnm]

#1069201

Krystal – Chances are that we are hypo for life – that is without replacement. Some very small percentage of people have a little thyroid that survives and they do not need replacement. However, it is my understanding that they would actually prefer to knock it out all the way, as there is less risk of cancer. I would have to look this up again to be totally sure but I am fairly comfortable that I did read that in one of my sources (about the cancer). So once we are stable on replacement, I think we can live pretty normal healthy lives. Serious eye disease is, fortunately, not common. I think we do have more eye symptoms – and, yes, eye problems can come on later but most of the time it is close to the same time we are diagnosed with hyper thyroid issues. I hope this helps. I am on vacation in at my daughter’s and don’t have my reference books.

[Hopeful23]

#1019098

I am confused as to how Gd is going to play a part into all this?

I mean I know I will always have Graves but how does it work now that I don’t have a thyroid. I mean besides the obvious? I know ill always have the disease and the anti-bodies but im not sure how it will effect me from a medical stand point? I know it can effect my eyes at any point, right? So, i am just getting treated for my hypo now and always? Can hypo ever go into remission or is this always going to be a part of me? My friend says her mom was treated for hypo for a very long time but isn’t on synthroid or anything anymore and I kind of got confused. I don’t know. Im just confused. Lol, sorry if this is a stupid question. I have my endo appt in August but I just thought I would ask now and see if I could get some kind of information that way I could refer any other questions to my endo that branch from what ever I learn/ hear from here….

Thanks

Krystal

[Bobbi]

#1069202

The main thing that the Graves antibodies are known to do is attach to the thyroid cells and stimulate over-production of thyroid hormone. This over-production of thyroid is what makes us ill. Once that is under control, we regain our health (except in those rarer cases where the excessive levels of thyroid hormone have gone on too long and triggered other problems, like heart disease, etc.). Therefore, since your thyroid has been removed, and you have gone hypothyroid, the main issue you face going forward is keeping your thyroid hormone levels within the normal zone via replacement. You must be checked periodically to make sure that whatever dose you are on is at the correct level. Odds are, your replacement dose will remain fairly constant, BUT….(Isn’t there always a "but?") If any thyroid cells are left in your body, there can be fluctuations in thyroid function, either up or down, over the years, and these fluctuations might necessitate a change in your replacement dose. The goal of both RAI and thyroidectomy is to remove enough thyroid tissue so that these fluctuations will be minor. But occasionally they can cause a change in your replacement dose. I had my RAI 12 1/2 years ago, and I have had some fluctuations — but none of them made me ill again.

Wishing you good health,

[Hopeful23]

#1069203

Okay, Thank you both so very much.

My dose was 14.6 and I went hypo in less than two months so Im hoping I have NO THYROID LEFT WHAT SO EVER. I am currently on Synthroid and I sure hope they find my DOSE. I hear a lot of people say they have not found my correct dose yet and Im like ohh, is this what I have to look forward to. I sure hope not and if it is I hope its not too bad or deblitation.

[vintagegreen]

#1069204

hopeful,
are you in the normal range with the synthroid? have the doctors found you your normal and optimum dose, the magic one that makes you feel great again? that is one of my biggest fears in going hypo, fighting to be normal again….not just in the labs…. keep us updated!

i love reading your updates and hope i can eventually make a decision and be at peace with it like you are,
A

i hate to use all these "normal" references because we know what normal is for us ……

[Hopeful23]

#1069205

vintage,
I have been on synthroid for almost two weeks now and I started feeling better on day 4. I am on 75mcg as a starting dose. I dont get bloodwork until the last week in August. I don’t know if 75 will be ‘MY DOSE’ however as of right now its doing well for me. I am not hugging or banging into walls like i was. I do have anxiety still but I had anxiety before all this so thats expected I guess. I am 100% HAPPY with my RAI decision. I had ZERO side effects. I didn’t have the swollen/soar throat or salivary glades. I didn’t have an upset stomach. I wasn’t STUCK in my room for any amount of time and it worked in 2 months. I am feeling more like me everyday. I still get tired but its not like its all day. It will be towards 12’midnight and ill be like dang im really tired all the sudden and ill go to bed and wake up and start my day fresh and with my lil pill. Not to mention I didn’t have the surgery side effects (ie. infection, scar, etc) now, some people that is their least concern when its cancer, or such a big goiter they are choking on it all day. Its really just whats right for you and your specific case. I had a goiter that I chocked on but it wasnt taking over my throat to where it was putting me or my body at an emergency state. I am glad my updates are helping you with any uncertainity that you may have. Please keep in mind everyone is different and I am very sensitive to emotions/medications/life so when I was feeling awful it may not have been awful to you. LOL…

[bradybunch6x1]

#1069206

I believe that almost everything I saw here is so right on, but also thought I could add a bit to it. There is always the chance of TED(mine did not come until years later after RAI). I also suffer from pretibial myxedema long after my thyroid was ablated. As far as fluctuations in medications, I have had to have it upped, but not alot mostly during pregnancies. During times not being pregnant, it has pretty much stayed the same. I have always ended up needing to stay on the higher dose after the pregnancy, which is not like most. Just be aware that the TED and myxedema can happen after an ablation(Not commen though). We also can end up with ostioperosis(I think I spelled that wrong), so bone density testing would be good to get when you start to get older. Other than those few things, I myself think it is pretty much all covered. I don’t want to scare you, but remember most of the things I have mentioned are not of what the doctors will call normal. Then again I am not normal…LOL
Valarie

[Author]

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