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First let me say that this site has been an amazing tool for the quest for information and knowledge in dealing with this disease! Kudos to all the facilitators who keep this wonderful BB going!
I wonder if anyone can provide some advice. My diagnosis came as the result of a thyroid storm which hospitalized me. After no sucess trying to control things with Tapazole (totally unsuccessful – wild swings- boy I mean wild in my thyroid levels) we finally went for the RAI. I am glad I did the RAI, the wild swings were more then even my doctors could take, they were totally stumped. I had the RAI in April 2001 and in May 2001 I was already hypo (which my doctor was totally shocked). I saw her 5 weeks post RAI and she told me it would be a while before I went hypo. I called her a week later feeling horrible and begged her to do a test. My TSH was already 42, the tests a week before had my TSH in normal range. Is that wierd?
Anyhow my question, I have had my dosage adjusted 4 times since May. It is now the beginning of August. Last adjustment was 2 weeks ago. Over the last week I have been feeling worse then ever with depression, fatigue, etc. My eyes are getting worse as well. I know my levels are not horrible. The last blood test has my TSH at 13. How is it that your levels can get a bit closer to normal and I feel worse emotionally? I felt really good in that period when I was on my way to hypo after the RAI. Is there something that my body is now missing with my thyroid function contininuing to die off? (And Synthroid can not replace) Is there something to this whole T3 thing needing to be replaced as well?
My gosh this is one frustrating disease. I want to get my thyroid stable so I can get my eye surgeries done. They won’t operate until I have had 3 months of stable levels. Awkkkkkkkkkkk!
Okay more then one question, sorry.
ThanksYour story sounds familiar: I have felt completely OK at demonstrably hypo levels, and “off” at normal ones. Go figure. That is not to say, however, that I haven’t also felt wonderful at these same, normal levels. I truly do not know what is going on, myself, all the time.
Having dose changes, I’ve found, all by themselves seems to create a sense of “not right” for a while. But that could just be me. The important thing seems to be for us to wait the appropriate amount of time between blood work — toughing it out — so that when we go back, our endos have a better picture of where we really are vis-a-vis TSH and thyroid hormone levels. Our pituitary levels (the TSH) often lag significantly behind actual levels of thyroid hormone registering in the blood.
As far as T3 supplementation is concerned, there is not a whole lot of reasonable research available to us at this point in time to know whether or not it works well, and safely. Most of what we think about it comes from anecdotal evidence (i.e., “I gave it to this patient, and she improved”), rather than from serious double-blind random research studies. Generally speaking, I personally think the best thing to do — based on what we actually know, rather than on what we can guess or logically try to deduce — is try the T4 route long enough to be stable for a significant period of time at normal levels of thyroid hormone. The large majority of people seem to do well this way. There are individuals, though, who continue to have trouble, and that is the time for the serious discussion with the endo about whether or not to supplement with T3, continuing to recognize that it’s still an “experimental” form of treatment.
As for what else your body could be missing. Being hyperthyroid seriously depletes the body in a lot of ways. It takes time for the body to heal. We need consistently good nutrition, exercise, and possibly even vitamin/mineral supplementation to help us get well faster. You should make sure you are eating right. When your doctor tells you it is safe to exercise again, you should set aside time every day to do to that, starting out slowly and methodically, to rebuild muscle mass that was lost while you were hyperthyroid. And talk with your doctor (NOT with a health supplement store employee) about whether you should be taking calcium, and other vitamin/mineral supplements.
I hope you are feeling better soon,
Bobbi — NGDF Asst. Online FacilitatorBobbi
Thanks so much for your reply. Question for you. I noticed in another post that you commented that you went hypo pretty soon after RAI. Do you mind sharing how soon and how hypo, if you remember? I am curious to know your experience in trying to reach normal thyroid levels after you went hypo as well. I understand everyone’s experience is unique and our bodies will do what they will. Just curious.In your reply you also commented that we need to tough it out in between medicine changes. My endo is having me wait about 2-3 months in between medicine changes. I try to tough it out and can’t make it that long in between checks. I have to “beg and beg” to go back in and get my blookwork done. Doc tells me I am fine over the phone, I get my labs back and the doc calls to tell me things are way off, and doc says no wonder you feel terrible. How do we know it’s time to call the doc and when it is time to ‘tough’ it out?
I like to try and tough it out but so far my body seems to SCREAM at me when things are off. Although I must comment the only guess I have as to what normal might feel like is when I was on my way to hypo after RAI. I felt really good then. Since I went hypo 6 weeks after RAI, I have had some ups and downs, but without a doubt this is the worst. I have not had any lab with normal levels since RAI so I am not expecting to feel great. I just can’t understand why it feels so much worse right now.
You mentioned that our endo needs to have enough time in between checks and adjustments to get a good understanding what is going on. How long is appropriate? For instance right now I feel just terrible. My medicine was last changed on 7/17. Is it enough time in between adjustments for more bloodwork or is it common for medicine changes to really start havoc about 3 weeks after the adjustment. I don’t have an appointment until end of September.
Oh also you mentioned nutrition and exercise. I read that some time ago you posted something about foods that can affect our thyroid. Could you repost. I can’t find it. Thanks.
Thanks for sharing your knowledge and experience.
Hi –
I’m just trying to make a decision about whether to do RAI or not, and frankly don’t want to go through what you have. I did ask my doctor if I do the RAI, how would we work it so I didn’t go too far hypo before starting the supplements and how would we make adjustments. She said that she would do a check at 6 weeks post RAI unless I was already feeling lousy before that. After the initial check she said we would test every two weeks and make adjustments until I was not only within “normal” lab limits, but also feeling well.
I know I go out on a limb here, but you might want to think about changing Endo’s and seeing if you can get one that is more responsive to your needs. I would hate to be forced to wait so long for treatment and then find the doctor saying “no wonder you feel so lousy.”
Good luck and keep in touch.
SarahC
If I were to have a choice, I would have had “them” cut out my thyroid gland instead of RAI. I was told when I went in that I would only need to get the RAI treatment once for sure because I had an unusually small thyroid gland. After a year, I had to get the RAI again because It went hyper again. Over the past 5 years, I have been dealing with thyroid storms which make it difficult to say the least to regulate my meds.
I’m not saying that is what to expect to happen to you but there is no doubt that if you get your gland removed, it will eliminate the chance of these thyroid storms and a lot of unexplainable side effects that you get when your gland is still partially alive. I would at least get three opinions before you do anything.
Good luck fellow warrior,Dave P.
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