[mellyo]

#1059557

Hi. I am 39 and have had Graves for 14 years. When I first got this disease, I had RAI and was on a relatively stable dose of Synthroid all these years. I’ve never felt great – mostly I’ve had lingering fatigue and low stamina. This year, due to stress, my levels have been crazy. Earlier this year I was hypo and so we increased my meds 3 different times, the last time threw me into hyper and I was really sick for a while. We are now working on decreasing the dose and I’m feeling better, but I’m not feeling good. Is there a chance that I can feel good with this disease or am I really going to need to learn how to function and live life with complete body aches, fatigue and low stamina? If so, how soon after my levels normalize will this occur, I’m still not at the right dose, but I think very close. I’m also still dealing with major anxiety from all the hormone fluctuations. Any thoughts or advice is appreciated.

[Kimberly]

#1175720

Hello and welcome! We are all fellow patients here, not docs…and Graves’ seems to affect each person a little differently, so it’s really difficult to predict what will happen going forward. We had one doc at our Boston conference note that he had never seen two Graves’ cases exactly alike – even in identical twins!

Some patients get treated, move on, and basically forget that they had Graves’, while for others, it’s more challenging to get levels regulated.

Since you are feeling better now, hopefully, you are on the right path! One other issue to consider might be keeping a very detailed symptom log and then see if you can match up how you are feeling with your recent set of labs. The “normal” range is fairly wide for thyroid function testing, and some patients find that they feel their best at a certain spot in the range.

Also, it might be helpful to take this symptom log to your general practitioner to see if he/she can pinpoint any other issues that might be causing your symptoms. You *deserve* to feel well again, so please be persistent until you can get to the bottom of this puzzle.

Take care!

[vanillasky]

#1175721

Hi! and welcome to the forum.

I was 39 when my thyroid went “off.” Now I’m 54 and diagnosed 2 months ago with Graves’ so who knows how long it’s been evolving. I haven’t felt well for all these years. They thought I had Hashimotos because it was hypo but only after a “spill” and hyper usually undetactable TSH or 0.01 was it. I have wasted away to 89 pounds in the past. Then go hyp0 and gain it all back and fight the scale.

So I honestly don’t know what to tell you except you have come to the right place because we are all in the same boat. I have learned a lot here and mostly, that I am not alone.

Karen

[Khadijah]

#1175722

Personally, if I get to the point where there is too much adjusting of medication that it interferes with my well being and I have done RAI I will take the next step and do the surgery. I guess once you have the surgery and hypo you can have dosing issues with the synthroid but from my understanding it is not so drastic? Also, it is possible to have had your thyroid grow back after RAI or may need a second round?

I don’t think you should accept this as your fate. I would fight until you are in a good place. That is why this is such a supportive site we are all fighting in our own way. I changed my view from surgery to Meds and I am giving the Meds a chance for now and I am having good results. But, I am open to whatever it takes to be in a good place. This graves sucks when you are in a bad place.

[Kimberly]

#1175723

Khadijah wrote:

Also, it is possible to have had your thyroid grow back after RAI or may need a second round?

@Khadijah – It’s rare, although it is possible for thyroid tissue to regenerate after RAI, especially if the patient is *not* given a “fully ablative dose” — meaning a large enough dose to destroy all remaining thyroid function.

The more common scenario is that the body sometimes needs different doses of medication as time goes on, so adjustments may be needed to keep the patient’s levels in the “normal” range.

By the way, I saw your other post…SO happy to hear that you are in a much better place now. Thank you for sharing, as this really gives hope to all of our members here!

[Khadijah]

#1175724

Thanks Kimberly! Yeah, who knew. I must have sounded possessed half the time. I sometimes have to pinch myself that the methmizole actually worked. I have to check my blood soon so hopefully there is no toxicity or hypo.

[Kimberly]

#1175725

@Khadijah – Here’s hoping that you get good news after the next set of labs! It’s really amazing to see many posters here go through a real transformation once they select a treatment option and end up getting levels stabilized!

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