[Bobbi]

#1066644

I can give you my experience. While on PTU, and at normal levels of thyroid (i.e. euthroid), I felt horrible. From comments online, I was told that I "must" be hypo — I wasn’t. I decided that I was having a reaction to the PTU, and made the decision to have RAI. I was told in comments online that I would feel the same way or worse after RAI. I didn’t. Thank goodness. I never, ever again felt as bad as I had while euthroid on PTU. In fact, after RAI and settling into replacement hormone, I have felt terrific. So, I know from my own experience that some folks cannot take the antithyroid meds, but they can do RAI or surgery and get well again.

Some of us do not handle the meds as well as others. Replacement hormone isn’t precisely a "med." It is chemically identical to our body’s own thyroxin (T4). It is used precisely the same way as our body’s own thyroxin. The only side effect issues have to do with getting too much of it (we become hyperthyroid) or too little (we are hypothyroid). If we get the right amount of it we are euthroid. Some, extremely few folks have a reaction to the inert ingredients (things like food coloring) that turn the chemical into pill form. There are, however, manufactured products that do not contain the dyes, etc., to get around that problem.

So, you need to adjust at least one part of your thinking. It’s a semantical quibble, but it may help you. Removing your thyroid (whether via RAI or surgery) will not leave you hypothyroid for the rest of your life. You will be euthroid on the replacement hormone, not hypo, just like you were pre-Graves.

We are extremely lucky with our autoimmune disease: we can live, and live well, without the organ that our body is attacking. If you cannot do the meds, and it sounds like you may not be able to, do know that you have options that can make you well again.

Good luck,

[stephg]

#1066645

Thanks Bobbi-

Its great to hear im not the only one who felt like that! I think the problem was when I was fine for a couple of months on B&R. Well, actually I never had any reactions to ATD’s. That is why the endo wondered was there something else causing me to feel so bad?! She said that if I was going to have a reaction to them it would have happened early on (as in early 2009)The first couple of months on the block and replace I felt great. Really good! but then I guess I can only explain it as ‘hitting a wall’. Extremely fatigued, I need to set like ten alarms to get me up in the morning, and no matter how many hours I have slept I feel unrefreshed. I was (and still am) having lightheaded and dizzy spells, where I literally feel I am going to faint! I guess it is just trial and error with medication and our chosen path as we all react differently. I am probably being really selfish as I have only had this trouble for a year and others have suffered it for years! Sorry guys ” title=”Wink” />

Maybe RAI is my best option, thats what my endo thinks. ATD’s obviously just aint my thing. As the endo said definitive treatment is my best option. Thanks again for the advice Bobbi! I read a post where you said ppl who do well after RAI dont tend to return with their success stories. That makes so much sense and they just put it all behind them after that!

Thanks ” title=”Very Happy” /> x

[enough3]

#1066646

I did not feel my best on PTU. I was on it for 2 years trying for that rare remission.

I had RAI in Nov.09 and went hypo last week. I have been on replacement for almost 7days and I feel SOOOOOOOOO much better already! I’m glad I tried remission…but Boy do I feel better with RAI/replacement! I have not gained a pound and I feel "mentally" that best I have felt in four years. It was a complete success for me!

My hubby and family see a huge change already.

[stephg]

#1066647

enough3 wrote: I feel SOOOOOOOOO much better already

Jeez thats great to hear! Very encouraging. It is so mentally (not to mention physically) draining. I think I am just in the height of it all now which I am sure everyone else has gone through as the disease runs its course! Thats like what my endo said to me, she said we will try the medication because you are so young (I guess its always worth a try!) if not we will do RAI. It just feels like its never going to get better. And Im not sure about anyone else but nobody I know has ever even heard of a thyroid….ha ha….ironic when you think about how our thyroid can go out of kilter and you know ALL about it then!!

I felt so upset when I first posted here today but now theres a little (actually no…a BIG) black cloud lifted from me. To know that possibly it was just the thyroid meds that were leaving me so drained:) Thanks guys!!

[stephg]

#1018713

Hi Guys,

I posted her a couple of months back and of my questions related to block and replace (or modified B&R I think it is also known as!) and I believe it is a treatment method rarely used these days. Anyway, I was on this treatment for 3 months and I became ‘euthyroid’ but actually felt awful. My endo had blood works done which showed a low count in lymphocytes so she took me off all medication straight away. (Although she said this was not worrying) She ordered a battery of tests to be done for other autoimmune disease eg. addisons, diabetes… all these have come back as normal. Which, is good but at the same time frustrating.I have been without medication now for three weeks and am no doubt overactive. I will be seeing her again in a couple of weeks. We are then going to be discussing radiation. (which I really dont want, because this ties me to hypo for life doesnt it?)

Can anyone esle relate to this? My endo believes that when I was ‘euthyroid’ I should have felt fantastic (as I had been so sick for so long) but I had never felt worse. Its really getting me down and I am just wondering is it going to be another year of bloods with no answers?! Any advice or sharing of experience with this would be great!!
I will have a list of questions when I do see her….I just feel like each visit I have I come out none the wiser when I went in!!

Thanks:) x

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