[joelynn]

#1019088

I am writing this out of cincinnati, ohio. my endo just told me that my thyroid scan showed graves disease, i am so new to this. i know my options and am adverse to radiation therapy. has anyone here da=ealt with medication therapy only? how does it work? i have also read that aspartame is a leadong cause of this disease.

[ewmb]

#1069115

Hi,
Welcome to this board. There are many people here who have used antithryoids for a long time to keep things under control. I tried that and was in a sort of remission for about a year when it all came back. I had RAI about three months ago. There are many good posts here about the three choices for treatment. Look for other posts about I’m new, just diagnosed etc.. The facilitators can answer lots of questions from their experience. Glad that you found the board.

ewmb

[jlw]

#1069116

I have been on methimazole for a year now. I started out at 30mg and have been on 5mgs for about four months. As of right now, my levels are stable and I am on three month intervals for level checks. If all stays normal range, then I will be taken off meds in March. What I have come to learn is that normal range levels does not necessarily mean feeling better.

For me, I thought about all options and decided to try the meds first. I figure that I will need to be on meds either way, with or without a thyroid, so why not try to reach remission first. That is not to say that I haven’t thought about radiation or surgery because there are many days I just want to be done with all of this. It’s such a strange and complicated disease.
What I know is that you will know what is the best choice for you. There are pros and cons to all of the choices. Take the time to figure what decision you can live with the best. ; )

[joelynn]

#1069117

Thank you so much for your response! Whay you said about normal ranges not necessarily meaning feeling better really stood out. Do you think you wil stay with meds or do radiation? Im feeling like meds might be the right choice for me because my disease isnt too progressed, it was caught early on by a routine physical by my family doctor. My worst symptoms are heat intolerance, tremors, heart palpatations and irregularities with my female stuff. What type of side effects do you experience while on meds, if you dont mind me asking.

[joelynn]

#1069118

ewmb wrote:Hi,
Welcome to this board. There are many people here who have used antithryoids for a long time to keep things under control. I tried that and was in a sort of remission for about a year when it all came back. I had RAI about three months ago. There are many good posts here about the three choices for treatment. Look for other posts about I’m new, just diagnosed etc.. The facilitators can answer lots of questions from their experience. Glad that you found the board.

ewmb

Thank you for your swift reply! Are you happy with the results of the RAI? Would you have done it right away?

[ewmb]

#1069119

Hi again,
I am happy so far with choosing RAI. I am not hypo yet but hope I am headed that way. I actually had my tsh go down to almost nothing about 10 weeks out of RAI. My endo said he has seen this before and that I should eventually go the other way. I actually wanted RAI upfront but was talked into medication. My dad has Graves and had RAI with no complications so that’s what I wanted. I was actually a lot sicker than my dad. My mom has Hasimotos so I knew that starting replacement hormone is not that big a deal in the long run. My main problem with the meds is even when I was in "normal" range I felt bad. I went hypo on the meds too and that wasn’t very fun. The past two and half years haven’t been good. I think it was obvious a few months into the meds that they weren’t for me but I had made a commitment to them. I stopped them about a year after starting them and was hoping for remission since my levels were pretty good then. It took nine more months to go hyper again. I had to go through a really rough time waiting for my levels to be hyper enough for the nuclear medicine doctors to feel comfortable treating me with RAI. I wish I had held my ground when I was first sick.

ewmb

[hyperm]

#1069120

Hi Welcome!!

You will receive a great deal of info and importantly so much support from what has grown to be a family on this forum. We are all here for you good days and bad.

Firstly, GD is an autoimmune disease so it lies dormant and it can take a trigger to set it off for me it was pregnancy others don’t know why it takes off. There are some great explanations in the archives so don’t want to repeat all that and bore you! The way I have been led to believe and through experience it doesn’t matter how early on they catch your condition it can progress in many ways. It took a year for me to be diagnosed 1st time around mostly due to a neglectful GP and my having "typical woman syndrome" that i just thought well this is how you feel when you are a mum I was on treatment for over 2 years – both carbimazole and then a combination called blocking treatment – which I felt awful on. I went on to PTU when I fell pregnant the first time around after diagnosis. While pregnant with my youngest my levels stabilised (as they mostly do during pregnancy) and I came off all meds. However, afterwards I became very ill and it took 8 months for my bloods to be stabilised to be able to have the op- even before the op my bloods started to go off again – which was confirmation for me that the ATD’s could no longer control my condition. Now inplace of being hyper I am now hypo- a condition I feel more personally happy with after all the events which took place post-partum. It doesn’t mean I am cured but it has settled alot of symptoms from hyper state which were becoming unbearable.

I do believe some people on here have reached remission – mamabear- who has a wealth of knowledge. I sadly never reached that stage.

It really is a numbers game and trying to find the correct dose of medication for you that may keep you stable for a short while and then for no apparent reason can go off again. To be honest the thought of surgery or RAI 4 years ago brought me out in cold sweats and I was petrified. Now I wish after my diagnosis I had just had the op or RAI. RAI option appears to be offered very early on at diagnosis in the USA unlike in the UK it isn’t really mentioned unless levels are struggling to be maintained.

You will find you will receive alot of replies from people with different experiences and it is through them that you may find your choice easier to make.

With regards to aspartame being the main cause for this condition – its not something I believe myself but then again I haven’t read too much into that side of it.

HTH

In the meantime take lots of care and lean on us thats we are all here for!

xx

[Ski]

#1069121

Just a quick comment about aspartame ~ there is no scientific proof of any connection, though the internet is rife with statements of causal links. It’s possible that misuse of aspartame serves to weaken the body and help trigger the disease, but the potential for Graves’ (or any autoimmune disease) is genetic and has nothing to do with aspartame.

[LaurelM]

#1069122

Hi,
I was able to acheive remission on ATDs and have been happy with the result. I was pretty emotionally loopy and didn’t have the most clear thought processes when I was diagnosed. The ATDs gave me time to thouroughly learn about the disease and treatment options. Since I tolerated the ATDs fairly well, I was fine just staying on them. I would consider trying them again if I come out of remission (even as a long term option). I am also more comfortable now with the other options surgical thyroidectomy or RAI. As long as there are no other medical reasons why you would have to choose one over the other, then it really is a very personal choice and you should go with what feels right to you.

There have been some very good discussions on long term ATD use, RAI, and thyroidectomies here on the board. It is OK to take some time to do plenty of research before you make any decisions as long as you have started treatment on ATDs.

Laurel

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