[swhited]

#1060642

Hi,

Haven’t posted in awhile, but have been reading others posts to see if anyone is experiencing he frustration. Yes, I guess we all are.
Diagnosed finally in Sept 2014 after many years of saying something’s wrong and no one thinking thyroid. I had an uptake if 137% after 24 hours and barely no TSH and free t3 and t4 at triple the upper levels of normal. Went on Methimazole at high does to bring things under control. Had RAI in January 2015. Seemed like positive results in February, and started very low dose of Synthroid. By the following month I had shot back up into very hyper territory again. Struggled throughout April and May to get levels back to a normal place. I was on the highest dose of methimazole, but then my WBC count bottomed out. My endo really doesn’t recommend a thyride tony, but with the way things were so out of control she thought I should see a surgeon. I did. In the beginning of May. Surgery scheduled for beginning of June, then for some reason I became extremely hypothyroid about 2 weeks before the surgery, so it was cancelled. My TSH was 37.35 and my t3 was 2.79 and t4 was .4. Maybe those aren’t horrible numbers I’m not really sure, but I know that t4 is slightly low but the tsh is high. So off the methimazole again. At the same time though the Antibodies that indicate Graves flew way ups to the 700-800 range. Not sure what that meant. So slowly this last couple of weeks the three numbers tsh, T3 and T4 have normalized without any medication, slough I have had to remain on beta blockers for a still racing heart and palpitations. So now I am suppose to wait two more weeks and do the blood work again, still holding off any thyroid meds, which makes sense. But I wonder, could this mean the RAI did decide to work although the endo and he surgeon said that would be pretty abnormal after 5-6 months. They said they don’t ususally see that happen especially with someone who had a very low dose of RAI. Could this be a temporary remission? Are we just delaying the inevitable? Which is really what I am thinking.
I’m really frustrated. I’m tired, I’m sick of taking medication to control the racing heart, etc. I would like to be able to exercise a little again. I’m sick of the sleeplessness and then being ridiculously exhausted. My joints ache, my digestive system is a mess. The anxiety when the numbers are in. The hyper range, the hair loss, the brain fog, etc.
I know I should just try to forget about it all and live my life, which seems like it has been on permanent hold for so long. I find I have lost all joy and seem to exist from one blood test to the next, which really are more of a letdown than anything because there is no resolution in sight. I seem to have lost all coping skills and fortitude.
Some of you have been on this journey for so much longer. I feel bad saying I’m just so done when I know many of you have weathered this for far longer and with more severity than I. I just hope to find some sort of resolution soon.

[Kimberly]

#1183849

Hello – Sorry to hear you are dealing with all of this! The stats that I’ve seen say that RAI takes anywhere from 6-18 weeks to work, so I don’t think it would be *extremely* unusual to see the RAI take effect at the 5-month mark. Hopefully, the next set of bloodwork will help shed some light on what is going on.

We have members here who have been success stories with surgery (hopefully, they will chime in), but obviously, *all* of the three treatment options have risks. The biggest issue would be to have access to a high-volume surgeon, either in your local community or by travelling out of town. You can’t completely eliminate the risks from surgery, but you can reduce them significantly by using a surgeon who does a LOT of these procedures. And you don’t get to change your mind once you move forward with surgery – so definitely make sure you understand all the risks and benefits.

Wishing you all the best!

[AzGravesGuy]

#1183850

After my TT last year…even my worst day is a MILLION times better than my best day before surgery.

Have you had an ultrasound or an uptake scan done since the RAI? If it was not ablative or if you developed nodules afterward like I did, it could be giving you the inconsistent levels.

Surgery changed me the same day, the very same day I felt different and better. Yes, there are risks to consider but at some point they are worth it.

When you live day in and day out tortured internally….at some point you snap. Everyone on this board has experienced that moment. I was afraid of surgery. For years it was not even on the table as an option. Then I had that moment…no looking back. Not one regret.

Surgery isn’t an instant fix, but it gives you a clear baseline to work with for replacement regulation. Plus…it stops the madness, the war raging inside your body really fast.

Don’t start training and lose a lot of weight without getting your levels checked along the way. (Lesson learned! Lol)

Don’t lose hope.
Don’t apologize for posting how you feel. You will feel better and when you do, post then too!

Do ask more questions of your surgeon and your dr team.
Do consider more opinions from TT posts here on the forum. Everyone has a different post surgical experience and my personal experience may not be typical.
Do feel empowered against your Graves’. You can fight back.

[flora]

#1183851

Hi swhited,
I’m so sorry, too, for the way things are going for you at the moment – we are so lucky to have this forum to turn to, aren’t we? I’m still on ATD, but I know what it feels like to be almost in “suspended animation” from blood draw to blood draw, as the search for the perfect dose continues, and with all those annoying physical and emotional symptoms, too. As hard as it is most days, I try to work in some “action and distraction” (I read that here on the forum, I think) – walk our dog, drop in to the neighbourhood coffee shop especially on rainy days, watch DVD’s of old sitcoms (Frasier, Cheers, Newhart, English comedies), get out into the garden and pretend I know what I’m doing . That tunnel seems pretty long I know, but I’m pinning my hopes on what everybody here says – we’ll get there! Soldiering on, Warriors – one way or another, we’ll all tame the GD beast!
All the best,
flora

[gatorgirly]

#1183852

It took a full six months for RAI to work for me. My TSH skyrocketed when it did finally work, but it was a welcome relief to know it wasn’t all for nothing. Be patient, and maybe it will finally kick in for you soon! If not, just know that there’s no reason why you can’t do it again with a higher dose, or you could always consider a thyroidectomy.

[swhited]

#1183853

Thank you Kimberly, AZ Graves Guy, flora, and gator girly.
Yes Flora you’re exactly correct- we are lucky to have this forum. I appreciate each of your thoughts and responses. Kimberly, I have read a lot of posts and took your advice. The surgeon I am seeing is the highest volume surgeon in the Chicago area. He comes highly recommended, so if my numbers go into hyper territory I feel really comfortable with him. Flora, I’m trying your action and distraction method, and on days I just can’t I will have to just be okay with that. I hope you also find your good point too sooner rather than later. Gator girly I was wondering if you remember what your dose of RAI was? Was it low, high? Did it take 2 doses? Did you also have a lot of up and down before and after RAI? Have you been able to find a stable level now?

[Author]

Posts